Do the Right Thing
A few days ago, someone said they found “ the blog you used to do”. Used to? Ouch!
One of my Twitter friends told me this morning that I should start blogging again. Two prompts in less than a week. I guess I should try then. I get myself in a corner sometimes when I think I
have to write the Great American Novel every time. I become stuck. How about if I just jot down some thoughts as a restart?
I am so depressed about the path our country is taking or should I say the path #45 is leading us down. We are shooting people st the border who are just standing still. We are ripping children out of the arms of their mothers & then “losing” them. We lie to our enemies & friends alike. We withdraw from agreements. Our word cannot be trusted. We are being “led” by a narcissistic liar, maybe even a sociopath. We argue among ourselves about his relative value and how to wrestle this country’s fate away from him. Spineless Conservatives do not speak up. ( Conservatives with a spine are my new best friends on Twitter) We threaten nuclear war. These techniques may work to make a real estate deal in NYC ( despite the many bankruptcies) but it’s no way to run a country. Don’t get me started on the mob ties, nepotism, & self enrichment going on. Why does Scott Pruitt still have a job? Why does that woman who mocked Senator McCain still have a job? Why do any of them still have a job?
On the positive front, I don’t have cancer anymore, thank G-d. My mother still has dementia but we are doing ok in our new apartment. I get to go places now away from home because I have more reliable help. They aren’t here 24 hrs a day, but I don’t need them that much. My mom qualified for Arizona Medicaid. They pay for 30 hrs/week. We pay for 18. Money is still tight but more do able. I’ve started gardening & feeding the birds again. My mom enjoys the fruits of this labor as do I.
Someone ran into my next door neighbor’s patio. I’m sorry about that but the gentleman who lives there was not hurt nor were his doggies. His outdoor furniture & potted plants are almost a total loss though. I worry about a lot of things, it never occurred to me to worry about a car driving onto my patio! Add that to the list!
My rent is being raised $58 as of September 1. :(
My mom hasn’t been in the hospital since December which is good.
Our kitties are fine & healthy.
Most of my neighbors are really nice!
I can look up from where I sit now & see the Catalina mountains.
Living in an apartment building can be worrisome. Someone in the building sent their cockroaches to visit me. It was a huge ordeal, but I think they are gone now. I have to be on guard though.
Two of my doctors have “deserted” me by daring to move to another state! I’ve met one of the replacements & I liked him very much except when he told me that because of my gene mutation I have to have a very yucky test every single year! Ok. I don’t like it, but it’s better than cancer.
It is hot here but we have air conditioning thank G-d!
Wish me luck finding a less expensive caregiver for the weekends. It could free up the budget a bit.
Audrey Hepburn once said something like “everything is better with 💄 (lipstick)”. I’ll go put some on now.
I’m writing this on my I Phone cause my laptop is just a giant headache. Forgive any typos.
Signed, Pam
Sunday, May 27, 2018
Sunday, December 3, 2017
And People Wonder Why I am Anxious
I drive a 16 year old car, but it is very cool, I think. Boys who carry my groceries to the car think it is cool anyway. It is a Pontiac Grand Am. I really want to keep it forever & it is a low mileage around town& occasionally to Phoenix car. It does take some attention but nothing like the other day. I knew I had some kind of oil leak & kept adding oil, but then the oil pressure light came on so I pulled into a nearby Jiffy Lube. They added oil, but it came squirting out as fast as they could put it in. They told me it wasn’t safe to drive to the repair shop so I called AAA for a tow. It took about an hour to get there. I told him I was going with the car so the tow truck driver said I could wait in the cab of his truck. I climbed up there & was keeping myself busy w/ my phone, but it did seem to be taking a long time to get the car on the truck. The driver appeared at the open window of the truck & said the winch failed & my car was DROPPED! The front fender was damaged. He told me not to worry, they would fix it, but he had to call his boss to come down & help him fix the winch. The boss was downtown so it took him another hour to get there. In the mean time I found out that when my car was dropped, it hit ANOTHER car in the parking lot. Oy Vey! The driver and his boss thanked me for not freaking out & staying calm. They didn’t know I was frozen with panic &/or just numb. They wanted to know whether I wanted the dents & scratches fixed first or the oil situation. I picked the oil to be first. I have the tow truck boss’s name. I’m to call him this week& arrange to get the front end repaired.
The oil problem turned out to be an “oil pressure sensor?”. It was relatively inexpensive thank G-d. There was also a small part on the shift handle that kept falling off & I had to look for it repeatedly on the floor before I could shift from reverse to drive. It made people in parking lots pretty angry waiting for me. They probably thought I was just spaced out. Since they don’t make Pontiacs any more there were only 4 of those little knobs left in the US, one of which was on the shelf at my repair shop so I grabbed that up too.
My problem is that these things happen to me all of the time, not the luck of having the one part right there, but the unlucky fact of having my car fall off a tow truck. I’m constantly waiting for some catastrophe to happen. I’m much better than I used to be, and I am at heart an optimist which seems contradictory but that’s me.
The oil problem turned out to be an “oil pressure sensor?”. It was relatively inexpensive thank G-d. There was also a small part on the shift handle that kept falling off & I had to look for it repeatedly on the floor before I could shift from reverse to drive. It made people in parking lots pretty angry waiting for me. They probably thought I was just spaced out. Since they don’t make Pontiacs any more there were only 4 of those little knobs left in the US, one of which was on the shelf at my repair shop so I grabbed that up too.
My problem is that these things happen to me all of the time, not the luck of having the one part right there, but the unlucky fact of having my car fall off a tow truck. I’m constantly waiting for some catastrophe to happen. I’m much better than I used to be, and I am at heart an optimist which seems contradictory but that’s me.
Tuesday, February 21, 2017
An Open Letter to the 45th President of the United States
Dear Mr. President
Written with love, concern, and a big dose of hopefulness.
I am not a fan of yours. More than that I dislike you. I will not list the reasons I dislike you because 1) I want you to finish reading the letter and 2) telling you why I don't like you is not the purpose of this letter.The purpose is to give you some unasked for advice.
I just saw part of your visit to the African-American History Museum on MSNBC. I think your interviewer for the segment I saw was Craig Melvin. He let you off a little easy, probably in hopes that he won't have to read his name in your tweets for the next 48 hours, but I digress.... He asked you a generic question about the meaning of the museum and your visit. You began talking about immigration, how we want good people in our country, how the museum is getting "tremendous" numbers, and that the museum is about 'Love'. The museum has nothing to do with immigration unless you consider people being hunted, chained, brought to these shores against their will & forced into slavery for hundreds of years as representative of immigration. This was an opportunity for you to talk about the horror of slavery & how we as a country are still recovering from it's evil. You could also have shone the light on the fact that slavery & forced marriages of children are still a fact of life in many parts of our world. I don't understand why when you don't know what else to say, you revert to numbers & the adjectives "tremendous" "huge" "fantastic" etc....... The number of visitors to the museum is certainly important, but you need to find a different vocabulary. As soon as people hear those words from you they just start laughing & tune you out.
Please stop speaking off the cuff especially in staged events like the museum visit this morning. Inevitably you end up stepping on the message you want to convey. Please hire a speech writer even for such brief comments. Commit to sticking to the script a few times & see how much better life can be when you are not continuously pi**ing people off.
Please banish Steve & Stephen. They are evil influences on you & our country. While you are at it, release Ms. Conway to seek another job. Find some people who say "no" to you. Your instincts and above named people are bad for you & our country. You have no experience governing. Please hire some people with experience who are willing to stand up to you. This will not suddenly turn you into my kind of President, but it will make the world a safer place.
Please make a visit to the Holocaust Museum and say the words "Jews" & "Holocaust" in the same sentence.
Please give the people of Palm Beach a weekend off & save the United States the $10 million it apparently costs every time you go there. Try Camp David.
Please hire a therapist to talk to. You are a complex man with an obvious need to always win, bully, exaggerate (and worse-lie) and be the center of attention. You seem to have a short attention span. You are impulsive. I think about these things when I go to sleep at night. I worry the world won't be here in the morning because of your impulsiveness.
Please get your news from your staff. Read their reports. Don't get half baked stories about Sweden from Fox News.
Give up the idea that your son in law can make peace in the middle east. Yes he seems quite bright & he is Jewish, but this is not the experience needed for this task.
It is obvious that I did not vote for you. However, you won. You are the President. Stop talking about Hillary Clinton. The race is over. I will point out that you won in part due to gerrymandered districts which gave you the necessary electoral votes.
Decide if your wife or your daughter is the First Lady. Your daughter seems like a lovely woman with a lot of sense and smarts, but she's not your wife.
Stop pretending you are not getting richer every day from influence peddling. We all know you are.
Your pessimism & bleak forecast are demoralizing. Please tap into some optimism you must have hidden somewhere.
Ah well, I could go on & on. I haven't even touched on the unqualified and destructive Cabinet appointees you have named. Possibly there will be a follow up post.
I don't like you or your policies, but I pray for your success. If you are successful, then our country will be successful. I wish the GOP had prayed for President Obama like I'm praying for you.
Sincerely, Pam
Written with love, concern, and a big dose of hopefulness.
I am not a fan of yours. More than that I dislike you. I will not list the reasons I dislike you because 1) I want you to finish reading the letter and 2) telling you why I don't like you is not the purpose of this letter.The purpose is to give you some unasked for advice.
I just saw part of your visit to the African-American History Museum on MSNBC. I think your interviewer for the segment I saw was Craig Melvin. He let you off a little easy, probably in hopes that he won't have to read his name in your tweets for the next 48 hours, but I digress.... He asked you a generic question about the meaning of the museum and your visit. You began talking about immigration, how we want good people in our country, how the museum is getting "tremendous" numbers, and that the museum is about 'Love'. The museum has nothing to do with immigration unless you consider people being hunted, chained, brought to these shores against their will & forced into slavery for hundreds of years as representative of immigration. This was an opportunity for you to talk about the horror of slavery & how we as a country are still recovering from it's evil. You could also have shone the light on the fact that slavery & forced marriages of children are still a fact of life in many parts of our world. I don't understand why when you don't know what else to say, you revert to numbers & the adjectives "tremendous" "huge" "fantastic" etc....... The number of visitors to the museum is certainly important, but you need to find a different vocabulary. As soon as people hear those words from you they just start laughing & tune you out.
Please stop speaking off the cuff especially in staged events like the museum visit this morning. Inevitably you end up stepping on the message you want to convey. Please hire a speech writer even for such brief comments. Commit to sticking to the script a few times & see how much better life can be when you are not continuously pi**ing people off.
Please banish Steve & Stephen. They are evil influences on you & our country. While you are at it, release Ms. Conway to seek another job. Find some people who say "no" to you. Your instincts and above named people are bad for you & our country. You have no experience governing. Please hire some people with experience who are willing to stand up to you. This will not suddenly turn you into my kind of President, but it will make the world a safer place.
Please make a visit to the Holocaust Museum and say the words "Jews" & "Holocaust" in the same sentence.
Please give the people of Palm Beach a weekend off & save the United States the $10 million it apparently costs every time you go there. Try Camp David.
Please hire a therapist to talk to. You are a complex man with an obvious need to always win, bully, exaggerate (and worse-lie) and be the center of attention. You seem to have a short attention span. You are impulsive. I think about these things when I go to sleep at night. I worry the world won't be here in the morning because of your impulsiveness.
Please get your news from your staff. Read their reports. Don't get half baked stories about Sweden from Fox News.
Give up the idea that your son in law can make peace in the middle east. Yes he seems quite bright & he is Jewish, but this is not the experience needed for this task.
It is obvious that I did not vote for you. However, you won. You are the President. Stop talking about Hillary Clinton. The race is over. I will point out that you won in part due to gerrymandered districts which gave you the necessary electoral votes.
Decide if your wife or your daughter is the First Lady. Your daughter seems like a lovely woman with a lot of sense and smarts, but she's not your wife.
Stop pretending you are not getting richer every day from influence peddling. We all know you are.
Your pessimism & bleak forecast are demoralizing. Please tap into some optimism you must have hidden somewhere.
Ah well, I could go on & on. I haven't even touched on the unqualified and destructive Cabinet appointees you have named. Possibly there will be a follow up post.
I don't like you or your policies, but I pray for your success. If you are successful, then our country will be successful. I wish the GOP had prayed for President Obama like I'm praying for you.
Sincerely, Pam
Sunday, December 4, 2016
Things To Do
* Either have an eye job or go to Hawaii. To do both would be too greedy? maybe not. Maybe have the eye job & then go to Hawaii. Then everyone will think my suddenly youthful appearance is from the vacation
*SELL THIS HOUSE
* Try convincing people to STOP using the chains on the ceiling fans! That's what the remote control &/or wall switch is for. I'm sick of guessing why the lights don't come on when I press the button on the remote. I swear I'm going to climb up on the table & cut the chains off. That'll teach them.
*Find the cure for Dementia
* Stop letting people upset me, just ignore them. I have this overwhelming urge though to engage anyone who irritates me.
*Somehow skip the next 4 years without anyone getting any older. (You know why)
*As alternative to last entry: A bolt of lightening strikes DJT & he isn't hurt at all, Instead he will suddenly become smart & compassionate ( and truthful).
* become a computer genius so that everything is not such a challenge.
*Lose 20 lbs overnight
*go zip lining
* overcome my deficits at learning a foreign language & parking a car.
* have dinner with Ina Garten, Martha Stewart, the notorious RBG, Jane Goodall, Elizabeth Warren, Gloria Steinem, Al Franken, Cory Booker, Rachel Maddow , Jaques Pepin, Ana Navaro, Armistead Maupin, David Sedaris, Joy Reid, Charlie Sykes, Charlie Kaufman, Mel Brooks and the entire staff of the New Yorker magazine.
* add names to above list as they occur to me. I will be so embarrassed about the people I forgot the first time.
*come to terms with the fact that I no longer have my finger on the pulse of pop culture.
*Go see Broadway musical HAMILTON
*ride on one of those sail boats that have hammocks that hang over the water.
*find a time machine & tell myself to major in art history, not Speech Pathology
*Actually, find a time machine & tell myself a lot of things not to do!
*Become as funny as Andy Borowitz and Calvin Trillian
*Open a Kosher Dairy restaurant & serve things like cauliflower soup and pasta putanesca. I wouldn't have to work hard, it could be like a restaurant on TV where the owner just stays front of house & talks to patrons.
*get blocked on Twitter by DJT
*I don't want to own a gun, I just want to go to a shooting range & get a lesson. Strange coming from a pacifist.
*Actually go to a Yoga, Tai Chi, meditation class & stop talking about it.
*not kill an orchid
*be known as that cool old lady with the strangely youthful eyes whose place is fun to hang out at.
*SELL THIS HOUSE
* Try convincing people to STOP using the chains on the ceiling fans! That's what the remote control &/or wall switch is for. I'm sick of guessing why the lights don't come on when I press the button on the remote. I swear I'm going to climb up on the table & cut the chains off. That'll teach them.
*Find the cure for Dementia
* Stop letting people upset me, just ignore them. I have this overwhelming urge though to engage anyone who irritates me.
*Somehow skip the next 4 years without anyone getting any older. (You know why)
*As alternative to last entry: A bolt of lightening strikes DJT & he isn't hurt at all, Instead he will suddenly become smart & compassionate ( and truthful).
* become a computer genius so that everything is not such a challenge.
*Lose 20 lbs overnight
*go zip lining
* overcome my deficits at learning a foreign language & parking a car.
* have dinner with Ina Garten, Martha Stewart, the notorious RBG, Jane Goodall, Elizabeth Warren, Gloria Steinem, Al Franken, Cory Booker, Rachel Maddow , Jaques Pepin, Ana Navaro, Armistead Maupin, David Sedaris, Joy Reid, Charlie Sykes, Charlie Kaufman, Mel Brooks and the entire staff of the New Yorker magazine.
* add names to above list as they occur to me. I will be so embarrassed about the people I forgot the first time.
*come to terms with the fact that I no longer have my finger on the pulse of pop culture.
*Go see Broadway musical HAMILTON
*ride on one of those sail boats that have hammocks that hang over the water.
*find a time machine & tell myself to major in art history, not Speech Pathology
*Actually, find a time machine & tell myself a lot of things not to do!
*Become as funny as Andy Borowitz and Calvin Trillian
*Open a Kosher Dairy restaurant & serve things like cauliflower soup and pasta putanesca. I wouldn't have to work hard, it could be like a restaurant on TV where the owner just stays front of house & talks to patrons.
*get blocked on Twitter by DJT
*I don't want to own a gun, I just want to go to a shooting range & get a lesson. Strange coming from a pacifist.
*Actually go to a Yoga, Tai Chi, meditation class & stop talking about it.
*not kill an orchid
*be known as that cool old lady with the strangely youthful eyes whose place is fun to hang out at.
Thursday, December 1, 2016
Good Behavior
There is a new TV show called Good Behavior on USA Network. I love the show. The joke is that the protagonist is on parole from prison because of good behavior, but she practices lots of bad behavior on the outside including hooking up with a paid hitman & blowing off her required visits with her parole officer Christian. Christian is also paying for some previous bad behavior as at one time he was a University Professor, but is now a parole officer due to some "hanky panky" with one of his students.
I don't know what this has to do with me, but I enjoy the concept that perhaps we are always paying for previous bad behavior by trying to do good.
I by no means believe that I have earned the load I am carrying around with me now. It's just the way it is. I've been in the right place at the right/wrong time. Did I show enough good behavior in the past to prove I'm up to these challenges? Are these stressors really here to help me learn a lesson? I want to yell " OK already, I get it, let me live in peace."
I don't have the discipline to write every day, even tho I want to. I have made promise after promise to no avail. Thus my first blog post since March, I think. Yesterday I was talking to a case manager from Pima Council on Aging (my 3rd or 4th in less than 2 years) I don't fire or drive them away, there is just a huge turnover. I keep holding on by my finger nails until I have to tell the whole story to a new person. If they are supportive & tell me what a lot I have faced & how well I have handled it, I have a stress induced pity party. Ironically, these phases are sometimes when I get the most done. ( I really want to climb into bed & pull the covers over my head which I'll admit I do at times).
The case manager was here yesterday to review services my mom is eligible for. Currently, we get 8 hours of respite care a week & financial assistance with her bathroom needs. In the last 2 years and 3 mos, we have spent approximately $98,000 on caregiving services & other necessities such home owners insurance, property taxes, household repairs,prescription co pays, food, electricity, car insurance, etc, etc......
We are not wasting money. We have a 15 year old car, have taken no vacations or purchased much clothing & certainly no lottery tickets. The landscaper keeps the yard looking nice. I couldn't do that. The pest control guy helps keep scorpions out of our house, I figured out the other day that this house costs approx. $12,000/year just to sit here with no people living in it. We are selling the house & moving to a 2 bedroom apartment. My mom doesn't like it & I'm afraid it is speeding along the advance of her dementia. We had a month long garage sale. I have sold almost everything of any worth at the garage sale, ebay & craig's list. We have been living on these proceeds for the last 3 months. I think I have to stay in the house until it sells, but I'm sorely tempted to figure out how we could move now & get it over with.
I've been reading The Minimalists on Face Book. I love the concept. My mother & father had so much stuff in this house that it took a full 3 months to get it out of here (either selling or donating). They were not hoarders by any means, but they were collectors. I've had to face that things are not the people who passed them on to you. The people are in your heart forever, the stuff is just that, stuff. It wasn't just my parents stuff we disposed of. I sold keepsakes I didn't think I would ever part with. I recycled my old year books. Sold all of the games & almost all of the furniture. As all of this stuff left the house, I felt so much lighter. I felt as though I had been carrying the weight of it around on my back because I knew someday I would have to figure out what to do with it. Don't worry, we still have at least 18 photo albums that need to be digitalized some day. My mom's chief caregiver thinks that what I want to keep will not fit into an apartment. We shall see.
For those who do not know this is a summary of the last 13 years: My father is diagnosed with a brain tumor& dies within a year, A month later, my sister is diagnosed with colo-rectal cancer & spends much of the 22 months before she died being cared for by me. Meanwhile, my mother's health declines, breaks her arm, is in constant back pain, & is hospitalized about 5 times. In 2013 I am diagnosed with colo rectal cancer, have radiation, chemo, surgery, more chemo, more surgery as well as breaking my arm & my ankle, getting kidney stones, heart arrythmia, & a few other things. I realize this isn't all about me. These things happened to my dad, sister, mom. I was just there to help them. Who mostly took care of me? my friends & family helped a little, but in the end it was me & my mom's caregivers who took care of me. Sometimes I was paying 2 caregivers at once. I have never seen money disappear so fast in my life! Don't want to give anyone the impression I need a bake sale, just your willing readership!
I don't know what this has to do with me, but I enjoy the concept that perhaps we are always paying for previous bad behavior by trying to do good.
I by no means believe that I have earned the load I am carrying around with me now. It's just the way it is. I've been in the right place at the right/wrong time. Did I show enough good behavior in the past to prove I'm up to these challenges? Are these stressors really here to help me learn a lesson? I want to yell " OK already, I get it, let me live in peace."
I don't have the discipline to write every day, even tho I want to. I have made promise after promise to no avail. Thus my first blog post since March, I think. Yesterday I was talking to a case manager from Pima Council on Aging (my 3rd or 4th in less than 2 years) I don't fire or drive them away, there is just a huge turnover. I keep holding on by my finger nails until I have to tell the whole story to a new person. If they are supportive & tell me what a lot I have faced & how well I have handled it, I have a stress induced pity party. Ironically, these phases are sometimes when I get the most done. ( I really want to climb into bed & pull the covers over my head which I'll admit I do at times).
The case manager was here yesterday to review services my mom is eligible for. Currently, we get 8 hours of respite care a week & financial assistance with her bathroom needs. In the last 2 years and 3 mos, we have spent approximately $98,000 on caregiving services & other necessities such home owners insurance, property taxes, household repairs,prescription co pays, food, electricity, car insurance, etc, etc......
We are not wasting money. We have a 15 year old car, have taken no vacations or purchased much clothing & certainly no lottery tickets. The landscaper keeps the yard looking nice. I couldn't do that. The pest control guy helps keep scorpions out of our house, I figured out the other day that this house costs approx. $12,000/year just to sit here with no people living in it. We are selling the house & moving to a 2 bedroom apartment. My mom doesn't like it & I'm afraid it is speeding along the advance of her dementia. We had a month long garage sale. I have sold almost everything of any worth at the garage sale, ebay & craig's list. We have been living on these proceeds for the last 3 months. I think I have to stay in the house until it sells, but I'm sorely tempted to figure out how we could move now & get it over with.
I've been reading The Minimalists on Face Book. I love the concept. My mother & father had so much stuff in this house that it took a full 3 months to get it out of here (either selling or donating). They were not hoarders by any means, but they were collectors. I've had to face that things are not the people who passed them on to you. The people are in your heart forever, the stuff is just that, stuff. It wasn't just my parents stuff we disposed of. I sold keepsakes I didn't think I would ever part with. I recycled my old year books. Sold all of the games & almost all of the furniture. As all of this stuff left the house, I felt so much lighter. I felt as though I had been carrying the weight of it around on my back because I knew someday I would have to figure out what to do with it. Don't worry, we still have at least 18 photo albums that need to be digitalized some day. My mom's chief caregiver thinks that what I want to keep will not fit into an apartment. We shall see.
For those who do not know this is a summary of the last 13 years: My father is diagnosed with a brain tumor& dies within a year, A month later, my sister is diagnosed with colo-rectal cancer & spends much of the 22 months before she died being cared for by me. Meanwhile, my mother's health declines, breaks her arm, is in constant back pain, & is hospitalized about 5 times. In 2013 I am diagnosed with colo rectal cancer, have radiation, chemo, surgery, more chemo, more surgery as well as breaking my arm & my ankle, getting kidney stones, heart arrythmia, & a few other things. I realize this isn't all about me. These things happened to my dad, sister, mom. I was just there to help them. Who mostly took care of me? my friends & family helped a little, but in the end it was me & my mom's caregivers who took care of me. Sometimes I was paying 2 caregivers at once. I have never seen money disappear so fast in my life! Don't want to give anyone the impression I need a bake sale, just your willing readership!
Monday, March 28, 2016
There's no one in the place except you & me
The post title is either the title or a lyric from a Frank Sinatra song that is swirling around in my head. It is 5:30 am and my mom has hardly slept. These nights are happening more often. I'm going to have to call the doctor to ask her if we should increase my mom's meds or hire someone to keep her comfortable at night. Comfortable means getting her drinks or pain medicine and reassuring her that she is safe. She sees things that are threatening such as strange men,groups of people having a party & 5 minutes ago she became very frightened because there is a bear in the room. I try to reassure her that we are alone, that this is her house, the doors are locked, that she must have had a bad dream or that the things she sees are in her brain. I have to be careful with how I talk about the last thing though. She is very aware that things are going wrong with her thinking. She says see is "cracking up" "going nuts" or that she needs a psychiatrist. She is scared of sleep cause she's afraid of not waking up so she talks & talks to herself trying to keep herself awake. When she panics she calls my name until I wake up & go to her room. Thank goodness for the 3 hour nap I had yesterday while a caregiver was here because nether my mom nor I had much sleep tonight.
Both of us need more sleep for the obvious & not so obvious reasons. One of my doctors ( how many do I have now? 10 I think) said a person needs 4 consecutive hours of sleep out of the goal of 7-8 hours a night. The 4 hours is to restore many brain functions & to burn fat. I haven't had more than 3 or 3 1/2 hours of uninterrupted sleep in a long time. Another doctor said " a sleepy brain is a hungry brain" consequently the 10 extra pounds that I have carried around the last few months.
I wish the support groups I tried were more helpful. I'd rather stay at home and nap. Oh and the talking stick annoyed me as well as the many rules. If I want to be bossed around, again I'd rather be at home being told what to do & how to do it by my mom.
I have proof read this but as sleepy as I am I probably made errors. Please understand.
I couldn't find my humor button for this post. Usually I try to channel my heroine Nora Ephron but not tonight.
Yawn.....
Sunday, October 11, 2015
A Jewish Perspective on Illness and "End of Life""
I am calling this "A Jewish Perspective" because it is mine. I can't speak for anyone else except I do know a lot of fellow Jews who agree with me.
I have blogged about being my mother's care giver, so you've probably read the background information that my mom is 89 (Thank G-d!) and in failing health. I've documented struggles communicating with her many nurses. I've grown so weary of explaining the same thing over & over & over again. I tell them I want a happy, optimistic atmosphere around us, whether in our home or hospital room. I retell the story of how my mom tore up her "advance directives" more than 10 years ago in her attorney's office. My father, of blessed memory, had just died. She said she didn't want her advance directives in place anymore. She said they took all hope away from the family & that if she was ever in that shape she wouldn't know the difference anyway. She wanted her healthcare power of attorney ( at that time my brother, now it is me) to do what s/he wanted or thought was best. I will add that at that time she was perfectly competent to make this decision.
A few weeks ago, a nurse insisted upon pursuing this subject over my objections because she was convinced my mom was having "mini strokes" which might lead to a "major stroke" from which she would not return. I explained my belief system as well as telling that advance directive story yet again. I emphasized that no matter what happens, this is her home for the rest of her life. I am committed to being her caregiver for as long as is needed. I told the nurse firmly that I thought we had already covered this subject and that my goals & ways of doing things reflect my religious belief. I told her I understood what damage a major stroke could cause. (by the way, my mom has not been having mini strokes. Further testing has revealed that she has been having trouble with her heart. Medication changes have been made. Some drugs contributing to the problem have been discontinued. So much for nurses diagnosing strokes.) The nurse said "I just wanted to make sure you didn't have your head in the sand". Who cares? Facing "reality" is over rated in my book. Why do nurses think that if they just hit you in the face with the facts, that you will change your mind & start agreeing with them? For the record, I know the reality of this situation, I choose not to talk about it.
Every person has their own definition of "extraordinary measures", at least they should. I have an idea of how I will act in the future as regards my mom's care, but there are no hard & fast rules. I will respond to each situation as it comes up. At hospitals, I hear the tone that is used when talking about my mom's "full code" status (in other words I want everything done). The tone is one of disdain & disbelief that I would want that for my 89 year old mother. I have worked in hospitals & nursing homes. I know that as soon as some one is designated a DNR (do not resuscitate) most staff just don't try as hard. I don't trust them not to get casual about routine care, treatment of infections, medication adjustments, etc if she is a DNR. I would probably put a stop to resuscitation pretty fast if I were there, but I refuse to let that get in her medical records because of my lack of trust that people will continue to give my mom the best care she deserves.
I don't believe in hospice. I realize that is not the popular view. I don't care, I don't want it. People are in disbelief when I tell them this. They try to talk me into agreeing with them. They extol its virtues. Some people bring it up with me over & over again. I have to say twice is my limit. If there is a third or fourth time, I do not respond well. I hate confrontation & drama but I will not be bullied. Don't misunderstand, my mom is a looooong way from needing hospice, even if I believed in it. In the same vein, someone else trying to ascertain my goals for the future (she was well trained & the most compassionate & accepting person who has talked to me about these subjects) brought up the "fact" based on "research" that it does not hurt to starve to death. I am not buying this, I never have & I doubt I ever will. As I said, I have worked in nursing homes & I've seen this first hand. Thank G-d my mom still has a good (though picky) appetite & has no problem chewing or swallowing.
I think it is funny that the people who are telling me that I have my head in the sand are the same people telling me my mom should be eating low salt, low fat, multi grain & low sugar foods. We do encourage all of those things, but when my mom wants ice cream, she gets ice cream. If she doesn't like the multi grain bread, I get her white bread. On one hand I feel they are all pushing her into her grave (G-d forbid), but they want her to be eating a healthy diet when she gets there. (grim humor, but that's me)
One other anecdote, my mom has expressed to me over & over that she does not want to die & that the thought of it makes her afraid. I told a nurse & she was astounded because as she said "your mom seems so religious". I thought "Huh?" I asked someone about this later. How can being religious mean you are not afraid of death? I think is must be a belief of other faiths. I am not sure.
I welcome comments, but please focus on your life experience or beliefs & don't try to talk me into or out of anything. I am tired of the battle & as I said I won't be bullied.
My mom is the third family member I have given care to. First there was my dad. I didn't do much more for him than keep track of his medicines, drive him to appointments, hire professional caregivers ( & fired 2), test blood sugar/ blood pressure, etc. Then I took care of my sister of blessed memory. I did almost everything my sister needed. I learned how to set the pumps & give her TPN & pain medication IV's. I gave her those shots in her belly to avoid blood clots, I drove back & forth to Phoenix before she moved down here to our home. Her illness was a special journey with a sister I loved more than you could imagine. We had always been close, but that experience brought us even closer. My sister remained optimistic of recovery till the end. We never talked about death. I didn't want to but would have if my sister gave me signals that she wanted to, but she did not. The day before she died she asked me if we could go to Phoenix the next day to visit her pets. I said yes. While she was sick I spent a lot of time on the computer next to her bed reading Chabad.org looking for solace & support. I found an article that had a profound effect upon me. It prompted me to write the following:
Life Plan
The Jewish point of view is that life & death are events controlled by G-d. Every soul that is brought into this world serves a very special purpose; as such each individual is indispensable. The soul’s mission may take a full lifetime in a body to complete, or perhaps just a few days. Life is precious and our wishes for Rebecca reflect this philosophy. We pray that the mission for her soul will take a full lifetime to complete.
We FIRMLY believe that a positive outlook can lead to positive outcomes. Therefore, we ask that everyone who is caring for Rebecca look inside themselves to create a happy & positive environment. With G-d’s help, you will become a partner in a very special outcome. It is unacceptable to us to just watch Rebecca die, as some doctors in Scottsdale suggested at the first of May. We feel strongly that G-d does not give doctors permission to state that there is NO hope. There is always hope & one must always try to help to the utmost of their ability. As a family, we have been fighting for Rebecca’s health. We feel strongly that the possibility exists that the diagnosis might not be so bad, or perhaps, G-d might make a miracle happen. (These past several months have been precious & valued. Rebecca & the rest of the family are convinced that miracles have happened to allow us this time). We do not accept her prognosis not out of denial, but out of conviction. Although we worry (a lot), we feel it is necessary to create our own reality with our thoughts, attitudes, words & actions.
There is a Yiddish saying “Tracht gut vet zein gut (think good & it will be good). We are doing as much as we can to effect a change spiritually in hope that it can change things physically. Thank you for respecting our wishes that only positive things be said in Rebecca’s presence.
The Siegel family
(Personalized with permission of the author of “Yerachmiel”, a memoir available at Chabad.org)
Written 9-7-2006
I have blogged about being my mother's care giver, so you've probably read the background information that my mom is 89 (Thank G-d!) and in failing health. I've documented struggles communicating with her many nurses. I've grown so weary of explaining the same thing over & over & over again. I tell them I want a happy, optimistic atmosphere around us, whether in our home or hospital room. I retell the story of how my mom tore up her "advance directives" more than 10 years ago in her attorney's office. My father, of blessed memory, had just died. She said she didn't want her advance directives in place anymore. She said they took all hope away from the family & that if she was ever in that shape she wouldn't know the difference anyway. She wanted her healthcare power of attorney ( at that time my brother, now it is me) to do what s/he wanted or thought was best. I will add that at that time she was perfectly competent to make this decision.
A few weeks ago, a nurse insisted upon pursuing this subject over my objections because she was convinced my mom was having "mini strokes" which might lead to a "major stroke" from which she would not return. I explained my belief system as well as telling that advance directive story yet again. I emphasized that no matter what happens, this is her home for the rest of her life. I am committed to being her caregiver for as long as is needed. I told the nurse firmly that I thought we had already covered this subject and that my goals & ways of doing things reflect my religious belief. I told her I understood what damage a major stroke could cause. (by the way, my mom has not been having mini strokes. Further testing has revealed that she has been having trouble with her heart. Medication changes have been made. Some drugs contributing to the problem have been discontinued. So much for nurses diagnosing strokes.) The nurse said "I just wanted to make sure you didn't have your head in the sand". Who cares? Facing "reality" is over rated in my book. Why do nurses think that if they just hit you in the face with the facts, that you will change your mind & start agreeing with them? For the record, I know the reality of this situation, I choose not to talk about it.
Every person has their own definition of "extraordinary measures", at least they should. I have an idea of how I will act in the future as regards my mom's care, but there are no hard & fast rules. I will respond to each situation as it comes up. At hospitals, I hear the tone that is used when talking about my mom's "full code" status (in other words I want everything done). The tone is one of disdain & disbelief that I would want that for my 89 year old mother. I have worked in hospitals & nursing homes. I know that as soon as some one is designated a DNR (do not resuscitate) most staff just don't try as hard. I don't trust them not to get casual about routine care, treatment of infections, medication adjustments, etc if she is a DNR. I would probably put a stop to resuscitation pretty fast if I were there, but I refuse to let that get in her medical records because of my lack of trust that people will continue to give my mom the best care she deserves.
I don't believe in hospice. I realize that is not the popular view. I don't care, I don't want it. People are in disbelief when I tell them this. They try to talk me into agreeing with them. They extol its virtues. Some people bring it up with me over & over again. I have to say twice is my limit. If there is a third or fourth time, I do not respond well. I hate confrontation & drama but I will not be bullied. Don't misunderstand, my mom is a looooong way from needing hospice, even if I believed in it. In the same vein, someone else trying to ascertain my goals for the future (she was well trained & the most compassionate & accepting person who has talked to me about these subjects) brought up the "fact" based on "research" that it does not hurt to starve to death. I am not buying this, I never have & I doubt I ever will. As I said, I have worked in nursing homes & I've seen this first hand. Thank G-d my mom still has a good (though picky) appetite & has no problem chewing or swallowing.
I think it is funny that the people who are telling me that I have my head in the sand are the same people telling me my mom should be eating low salt, low fat, multi grain & low sugar foods. We do encourage all of those things, but when my mom wants ice cream, she gets ice cream. If she doesn't like the multi grain bread, I get her white bread. On one hand I feel they are all pushing her into her grave (G-d forbid), but they want her to be eating a healthy diet when she gets there. (grim humor, but that's me)
One other anecdote, my mom has expressed to me over & over that she does not want to die & that the thought of it makes her afraid. I told a nurse & she was astounded because as she said "your mom seems so religious". I thought "Huh?" I asked someone about this later. How can being religious mean you are not afraid of death? I think is must be a belief of other faiths. I am not sure.
I welcome comments, but please focus on your life experience or beliefs & don't try to talk me into or out of anything. I am tired of the battle & as I said I won't be bullied.
Life Plan
The Jewish point of view is that life & death are events controlled by G-d. Every soul that is brought into this world serves a very special purpose; as such each individual is indispensable. The soul’s mission may take a full lifetime in a body to complete, or perhaps just a few days. Life is precious and our wishes for Rebecca reflect this philosophy. We pray that the mission for her soul will take a full lifetime to complete.
We FIRMLY believe that a positive outlook can lead to positive outcomes. Therefore, we ask that everyone who is caring for Rebecca look inside themselves to create a happy & positive environment. With G-d’s help, you will become a partner in a very special outcome. It is unacceptable to us to just watch Rebecca die, as some doctors in Scottsdale suggested at the first of May. We feel strongly that G-d does not give doctors permission to state that there is NO hope. There is always hope & one must always try to help to the utmost of their ability. As a family, we have been fighting for Rebecca’s health. We feel strongly that the possibility exists that the diagnosis might not be so bad, or perhaps, G-d might make a miracle happen. (These past several months have been precious & valued. Rebecca & the rest of the family are convinced that miracles have happened to allow us this time). We do not accept her prognosis not out of denial, but out of conviction. Although we worry (a lot), we feel it is necessary to create our own reality with our thoughts, attitudes, words & actions.
There is a Yiddish saying “Tracht gut vet zein gut (think good & it will be good). We are doing as much as we can to effect a change spiritually in hope that it can change things physically. Thank you for respecting our wishes that only positive things be said in Rebecca’s presence.
The Siegel family
(Personalized with permission of the author of “Yerachmiel”, a memoir available at Chabad.org)
Written 9-7-2006
Saturday, September 19, 2015
A LETTER TO MY FAVORITE NEPHEW ON HIS BAR MITZVAH
Dear Samuel, oh alright I'll try to use your grown up name, Dear Sam,
Ok, you are my only nephew, but you are still my favorite! This morning was your Bar Mitzvah. I was so happy to be there & I was proud of all of the hard work you put into studying. You did a wonderful job.
Your father's Bar Mitzvah was in Springfield, Illinois. He also did a good job. He wore a tie I picked out for him. I remember lots of people & eating salmon. (sound familiar?) There was a famous person there. The Governor came! His name was Otto Kerner (look him up, but NOT on Wikipedia!) He was a friend of your Grandfather Siegel. Thankfully, your grandfather wasn't too friendly with the Governor, cause like a lot of Illinois politicians, he eventually was tried, convicted & sent to prison for something involving bribes.
Another Bar Mitzvah that stands out in my memory was our cousin Steven. He also did a good job & the party was fun. There was also a famous person at that simcha. An author named Herman Wouk attended. You can look him up too. I was very impressed to meet him, but as I admitted in a previous blog post, I was a little tipsy when I met him. There is a funny story about an exchange between Aunt Patricia & Uncle Stanley before the party started. Uncle Stanley wanted to move Mr Wouk's books to a more prominent location in the house, but that would mean they would need to be on the same shelves as the Torah books. Aunt Patricia said he was a great author, but she didn't think he could compete with Hashem. I think the books stayed where they were. Herman Wouk did NOT go to jail. Recently, B"H, he celebrated his 100th birthday by publishing another book "Sailor and Fiddler: Reflections of a 100-Year-Old Author".
I think the famous people at your Bar Mitzvah today were your Great Grandfather Lewis- Eliezer- Siegel(who you are named after), the previous Lubavitcher Rebbe & his successor The Rebbe Menachem Mendel Schneerson. In the 1940's, Grandpa donated money to Chabad. He would bring the donations in person when he was in Crown Heights. We really didn't know this story until Rabbi Shemtov's father was visiting in Tucson & met your Grandfather Siegel. It turned out the Rabbi's father recognized the Siegel name & asked if our family was from Lancaster, Pennsylvania. He remembered Grandpa Siegel! I don't believe in coincidences. This was all meant to be. Your Great Grandfather contributed to the very organization that educated Rabbi Shemtov, who in turn educated you. You are a product of the generations that came before.
I remember the day you were born. Your parents were generous enough to allow your large extended family to wait right outside the operating room and then into the recovery area. We were taking turns holding & kissing you & your sister when you were less than an hour old. I leaned down to kiss your mother. I whispered "Thank you" in her ear. I think she said "you're welcome".
When you & your sister were named, I was awed at the meanings of your names. Your Grandfather Siegel pointed out that your names mean G-d was asked & G-d answered. I consider you and your sister to be miracles who bring great happiness to our family.
Samuel, you are your own young man. You know your mind. I hope this remains a life long trait. This makes you strong. (I do hope you realize this is a super power. Please use for good, not evil. Just kidding, wanted you to laugh in case I am being too sentimental.)You are a sweet, kind boy with a loving disposition. I hope that doesn't spoil your reputation with your friends! I won't reflect on your entire life to this point, I don't want to embarrass you any more than I have already. However, I do remember you helping your sister stay out of trouble with the water fountain we used to have, when you offered her food from your plate, your extreme excitement at getting the little electric car, the fun you had moving dirt & rocks around the yard with a just your size tractor, how you pretended to be your Grandfather & made snoring noises, how you could talk & talk about how to fix things around the house, how during your fireman phase I made you very happy at Chanukkah with a roll of yellow "Do not cross" tape. I remember more happy times when you and your sister helped me make challah or clean for Passover. You have loved cleaning things since you could walk. I don't know if you are still interested in cleaning, I'll ask your mother:) Earlier this year, we had to replace our refrigerator. I was happy to get a new one, but will miss the old one especially because there were cracks in the bottom of it where you used to stand to reach the top shelf. One of my most precious memories is Simchas Torah when your Grandfather Siegel was still with us & 3 generations of Siegels were called to the Torah at one time, you, your dad & your grandfather.
I was not prepared to cry like a baby today at shul, but you did such a good job & I was thinking of these good memories & my sadness that some very important people are no longer with us.
I know we'll have lots of fun times in the future. I can't wait to see what they are.
Love, Tante Pam
Ok, you are my only nephew, but you are still my favorite! This morning was your Bar Mitzvah. I was so happy to be there & I was proud of all of the hard work you put into studying. You did a wonderful job.
Your father's Bar Mitzvah was in Springfield, Illinois. He also did a good job. He wore a tie I picked out for him. I remember lots of people & eating salmon. (sound familiar?) There was a famous person there. The Governor came! His name was Otto Kerner (look him up, but NOT on Wikipedia!) He was a friend of your Grandfather Siegel. Thankfully, your grandfather wasn't too friendly with the Governor, cause like a lot of Illinois politicians, he eventually was tried, convicted & sent to prison for something involving bribes.
Another Bar Mitzvah that stands out in my memory was our cousin Steven. He also did a good job & the party was fun. There was also a famous person at that simcha. An author named Herman Wouk attended. You can look him up too. I was very impressed to meet him, but as I admitted in a previous blog post, I was a little tipsy when I met him. There is a funny story about an exchange between Aunt Patricia & Uncle Stanley before the party started. Uncle Stanley wanted to move Mr Wouk's books to a more prominent location in the house, but that would mean they would need to be on the same shelves as the Torah books. Aunt Patricia said he was a great author, but she didn't think he could compete with Hashem. I think the books stayed where they were. Herman Wouk did NOT go to jail. Recently, B"H, he celebrated his 100th birthday by publishing another book "Sailor and Fiddler: Reflections of a 100-Year-Old Author".
I think the famous people at your Bar Mitzvah today were your Great Grandfather Lewis- Eliezer- Siegel(who you are named after), the previous Lubavitcher Rebbe & his successor The Rebbe Menachem Mendel Schneerson. In the 1940's, Grandpa donated money to Chabad. He would bring the donations in person when he was in Crown Heights. We really didn't know this story until Rabbi Shemtov's father was visiting in Tucson & met your Grandfather Siegel. It turned out the Rabbi's father recognized the Siegel name & asked if our family was from Lancaster, Pennsylvania. He remembered Grandpa Siegel! I don't believe in coincidences. This was all meant to be. Your Great Grandfather contributed to the very organization that educated Rabbi Shemtov, who in turn educated you. You are a product of the generations that came before.
I remember the day you were born. Your parents were generous enough to allow your large extended family to wait right outside the operating room and then into the recovery area. We were taking turns holding & kissing you & your sister when you were less than an hour old. I leaned down to kiss your mother. I whispered "Thank you" in her ear. I think she said "you're welcome".
When you & your sister were named, I was awed at the meanings of your names. Your Grandfather Siegel pointed out that your names mean G-d was asked & G-d answered. I consider you and your sister to be miracles who bring great happiness to our family.
Samuel, you are your own young man. You know your mind. I hope this remains a life long trait. This makes you strong. (I do hope you realize this is a super power. Please use for good, not evil. Just kidding, wanted you to laugh in case I am being too sentimental.)You are a sweet, kind boy with a loving disposition. I hope that doesn't spoil your reputation with your friends! I won't reflect on your entire life to this point, I don't want to embarrass you any more than I have already. However, I do remember you helping your sister stay out of trouble with the water fountain we used to have, when you offered her food from your plate, your extreme excitement at getting the little electric car, the fun you had moving dirt & rocks around the yard with a just your size tractor, how you pretended to be your Grandfather & made snoring noises, how you could talk & talk about how to fix things around the house, how during your fireman phase I made you very happy at Chanukkah with a roll of yellow "Do not cross" tape. I remember more happy times when you and your sister helped me make challah or clean for Passover. You have loved cleaning things since you could walk. I don't know if you are still interested in cleaning, I'll ask your mother:) Earlier this year, we had to replace our refrigerator. I was happy to get a new one, but will miss the old one especially because there were cracks in the bottom of it where you used to stand to reach the top shelf. One of my most precious memories is Simchas Torah when your Grandfather Siegel was still with us & 3 generations of Siegels were called to the Torah at one time, you, your dad & your grandfather.
I was not prepared to cry like a baby today at shul, but you did such a good job & I was thinking of these good memories & my sadness that some very important people are no longer with us.
I know we'll have lots of fun times in the future. I can't wait to see what they are.
Love, Tante Pam
Wednesday, September 9, 2015
Some People are Just Crazy
This is a follow up to a previous blog post We Don't Live In Oregon: Caregiving Part Umpteen and a Half. Events yesterday were too weird to believe. I went to see my Internist for a routine checkup. She works in the same clinic as the provider who "fired" my mom as a patient because they could not meet "family expectations". This was my second visit to the clinic since my mom was "termed". (I've been told that is a preferred word to "fired") Both times I prepared myself for running into my mom's former provider. I would keep a blank expression on my face & look past her if the situation arose. It had occurred to me to switch doctors, but I really like the one I have. I think she likes me. We are a good fit. She's been nothing but supportive through all the cancer saga. I didn't want to give that up just so I would never have to run into the other provider. The fly in the ointment is that my mom's former provider is the owner of the practice. My doctor is her employee.
Yesterday I was called back from the waiting room for my appointment. My vitals were taken & I was shown into an exam room. I should have known something was up as that is not the usual routine there. (Usually I would be shown back to the waiting room & called back to the exam room when the doctor was ready.) I waited a few minutes in the exam room, there was a knock at the door & the Nurse Practitioner who was my mom's former PCP walked into the room & proceeded to literally yell at me for about 60 seconds about how she had heard from 3 separate people that I had been saying "disparaging" things about her. She never took a breath. She said "it must stop" & if it didn't that I "would no longer be welcome at the practice". She then turned around & left the room. I was completely blindsided. I thought my privacy had been invaded. I wanted to flee immediately. I wish I could say I wanted to follow her down the hall doing my own shouting but I'm not that person. I started pacing the room, I opened the door, I didn't want any more surprises. My doctor came in. She knew what was going to happen before hand, but was not in the position to interfere. We had a frank discussion. I was quite agitated. I said I had been afraid of conflict (tho not to this degree) , but I didn't want to change doctors. She said she would understand if I did & she could give me some names. Then we went on to have a normal appointment. She wants me to see yet another specialist. This will be about my 10th doctor. I made a follow up appointment for 3 months & got the hell out of there.
I went home & almost asked the caregiver who was with my mom for one of her cigarettes. (I haven't smoked in about 2 and 1/2 years.) Instead I ate two bowls of ice cream. Yeah getting fat is really going to show her!
I've thought about this since last evening & have come to some decisions. I guess I do have to change doctors. My psyche simply can take no more stress. I could not picture myself ever walking into that place again. I'll wait on the referral to the nephrologist, then call my doctor & ask for recommendations for a new provider. I will miss her, but I see no other option. I did some googling to find how to lodge a formal complaint with the State. I had considered this before, but thought things would just calm down. I want peace & happiness & feelings of positivity in our lives & our home. However, after yesterday I concluded that people need to be protected from such unprofessional behavior.
I have no idea who these 3 people are who the nurse practitioner says I have been saying disparaging things about her to. One of them may be my former employee who I "termed"(after late night inebriated phone calls, missing pills & lies including continuing to present herself as a CNA more than a year after her certification had expired.) The two of them are friends.I said very little about the matter to that person. I am too busy to be obsessed with spreading gossip. This brings me to my final thought on the subject. How would she thinks she knows that I have been saying disparaging things about her if she wasn't talking about confidential patient information at inappropriate times & places?
Yesterday I was called back from the waiting room for my appointment. My vitals were taken & I was shown into an exam room. I should have known something was up as that is not the usual routine there. (Usually I would be shown back to the waiting room & called back to the exam room when the doctor was ready.) I waited a few minutes in the exam room, there was a knock at the door & the Nurse Practitioner who was my mom's former PCP walked into the room & proceeded to literally yell at me for about 60 seconds about how she had heard from 3 separate people that I had been saying "disparaging" things about her. She never took a breath. She said "it must stop" & if it didn't that I "would no longer be welcome at the practice". She then turned around & left the room. I was completely blindsided. I thought my privacy had been invaded. I wanted to flee immediately. I wish I could say I wanted to follow her down the hall doing my own shouting but I'm not that person. I started pacing the room, I opened the door, I didn't want any more surprises. My doctor came in. She knew what was going to happen before hand, but was not in the position to interfere. We had a frank discussion. I was quite agitated. I said I had been afraid of conflict (tho not to this degree) , but I didn't want to change doctors. She said she would understand if I did & she could give me some names. Then we went on to have a normal appointment. She wants me to see yet another specialist. This will be about my 10th doctor. I made a follow up appointment for 3 months & got the hell out of there.
I went home & almost asked the caregiver who was with my mom for one of her cigarettes. (I haven't smoked in about 2 and 1/2 years.) Instead I ate two bowls of ice cream. Yeah getting fat is really going to show her!
I've thought about this since last evening & have come to some decisions. I guess I do have to change doctors. My psyche simply can take no more stress. I could not picture myself ever walking into that place again. I'll wait on the referral to the nephrologist, then call my doctor & ask for recommendations for a new provider. I will miss her, but I see no other option. I did some googling to find how to lodge a formal complaint with the State. I had considered this before, but thought things would just calm down. I want peace & happiness & feelings of positivity in our lives & our home. However, after yesterday I concluded that people need to be protected from such unprofessional behavior.
I have no idea who these 3 people are who the nurse practitioner says I have been saying disparaging things about her to. One of them may be my former employee who I "termed"(after late night inebriated phone calls, missing pills & lies including continuing to present herself as a CNA more than a year after her certification had expired.) The two of them are friends.I said very little about the matter to that person. I am too busy to be obsessed with spreading gossip. This brings me to my final thought on the subject. How would she thinks she knows that I have been saying disparaging things about her if she wasn't talking about confidential patient information at inappropriate times & places?
Friday, August 28, 2015
Letter to my cousin
Following with a few minor modifications is an email I wrote to one of my cousins this morning.
Hi, want to keep you updated even when some of the news is disheartening. My mom is literally getting worse by the day. I was not prepared for that rapidity. I've never heard of it before. Every doctor or nurse I tell this to has no explanation, except sometimes this is the way it is. Just at her birthday 8 months ago she was at the table, wearing her crown,enjoying the meal,company & presents. Yesterday she started spitting out her pills all of a sudden, seemingly out of nowhere, although she did begin to have trouble getting some of them down last week. I guess starting this morning I crush them & disguise their taste in food. Last night I called the pharmacist & found I can crush all but one of her pills. I will need to call the doctor for a substitute. Her food has been getting softer & softer. My brother brought her a root beer float yesterday. I'm making her shakes & smoothies although she can eat small bites of chicken that the caregiver made in my toaster oven. We are feeding her most of the time, tho we left a bowl of ice cream in front of her, went to do something else & found her feeding herself! She keeps her eyes closed most of the time. She is not walking or standing anymore,but only because her fear outweighs her strength/abilities. Last night she said good night to me as her "sweet darling girl", but had been mad at me most of the day because I would not leave her alone to just vegetate. I made cookies yesterday in effort to get her to move her arms and hands to feed herself. It did not work although she enjoyed the cookie when I put pieces in her mouth. The tests in the hospital indicated no strokes. I realize she has dementia,but some of these symptoms happening so fast make me wonder if some of it is psychiatric. I'm pretty sure my Great Grandmother deteriorated not only from "senility" as it was called in those days but from a broken heart after my Great Grandfather died. My mom has at times in her life been "high strung", but she has not been the same since her sister, then my father and then my sister died. Some of her eccentric behavior in the past decade or so I now see as the beginnings of the current problems.
Sorry to burden you with this, but thought you would like to know.
Love & Hugs, Pam
Hi, want to keep you updated even when some of the news is disheartening. My mom is literally getting worse by the day. I was not prepared for that rapidity. I've never heard of it before. Every doctor or nurse I tell this to has no explanation, except sometimes this is the way it is. Just at her birthday 8 months ago she was at the table, wearing her crown,enjoying the meal,company & presents. Yesterday she started spitting out her pills all of a sudden, seemingly out of nowhere, although she did begin to have trouble getting some of them down last week. I guess starting this morning I crush them & disguise their taste in food. Last night I called the pharmacist & found I can crush all but one of her pills. I will need to call the doctor for a substitute. Her food has been getting softer & softer. My brother brought her a root beer float yesterday. I'm making her shakes & smoothies although she can eat small bites of chicken that the caregiver made in my toaster oven. We are feeding her most of the time, tho we left a bowl of ice cream in front of her, went to do something else & found her feeding herself! She keeps her eyes closed most of the time. She is not walking or standing anymore,but only because her fear outweighs her strength/abilities. Last night she said good night to me as her "sweet darling girl", but had been mad at me most of the day because I would not leave her alone to just vegetate. I made cookies yesterday in effort to get her to move her arms and hands to feed herself. It did not work although she enjoyed the cookie when I put pieces in her mouth. The tests in the hospital indicated no strokes. I realize she has dementia,but some of these symptoms happening so fast make me wonder if some of it is psychiatric. I'm pretty sure my Great Grandmother deteriorated not only from "senility" as it was called in those days but from a broken heart after my Great Grandfather died. My mom has at times in her life been "high strung", but she has not been the same since her sister, then my father and then my sister died. Some of her eccentric behavior in the past decade or so I now see as the beginnings of the current problems.
Sorry to burden you with this, but thought you would like to know.
Love & Hugs, Pam
Saturday, July 18, 2015
Boss In Training
Care giving for my mom has been a continuous learning experience. I cherish every moment we have & everything I'm able to help her with. She says " I don't want to be a burden to you." I tell her she is not a burden. It is my honor to be able to help her now.
One thing I did not bargain on was being someone's boss. I did everything here by myself until I couldn't do it anymore then I hired some caregivers to help me. I have made mistakes. I mentioned at least one of them in a previous post "I have to leave at three o'clock". I have made friends with some of the caregivers. Not recommended. There needs to be some respect for each other's roles & mutual recognition of the employer/employee relationship which is negated if you become "friends". I waited too long to replace two caregivers who were not working out. I kept thinking I would awaken one day & the two of them would suddenly discover all on their own that their performance was lacking. I had too much faith in being "lucky" rather than in directing their work. On the other hand, I did post a short list of things to do each day on my mom's bathroom mirror. I appear to have been the only one who read it. There was one employee who thought she was directing my work. I let that drag on way too long. She thought it was appropriate work place behavior to roll her eyes, leave the room in a huff & then give me the silent treatment. Her explanation for this adolescent behavior was that I must not trust her if I kept "interfering". What can I say to that? Thank you very much for your help & good luck in the future.
One employee pushed me to cut out a list of 10 questions to ask a home care agency about how they select their caregivers. The irony is that she is the one who caused the most problems. Someday when I write my book, I will go into details, but the problems included fraud, alcoholism & possible theft of some of my mom's anti anxiety medications.
I resolve: I will stop making friends with the caregivers, I will keep our medications under lock & key, I will not make them take a breathalyzer test before coming in the front door, but on the other hand maybe I should.
One thing I did not bargain on was being someone's boss. I did everything here by myself until I couldn't do it anymore then I hired some caregivers to help me. I have made mistakes. I mentioned at least one of them in a previous post "I have to leave at three o'clock". I have made friends with some of the caregivers. Not recommended. There needs to be some respect for each other's roles & mutual recognition of the employer/employee relationship which is negated if you become "friends". I waited too long to replace two caregivers who were not working out. I kept thinking I would awaken one day & the two of them would suddenly discover all on their own that their performance was lacking. I had too much faith in being "lucky" rather than in directing their work. On the other hand, I did post a short list of things to do each day on my mom's bathroom mirror. I appear to have been the only one who read it. There was one employee who thought she was directing my work. I let that drag on way too long. She thought it was appropriate work place behavior to roll her eyes, leave the room in a huff & then give me the silent treatment. Her explanation for this adolescent behavior was that I must not trust her if I kept "interfering". What can I say to that? Thank you very much for your help & good luck in the future.
One employee pushed me to cut out a list of 10 questions to ask a home care agency about how they select their caregivers. The irony is that she is the one who caused the most problems. Someday when I write my book, I will go into details, but the problems included fraud, alcoholism & possible theft of some of my mom's anti anxiety medications.
I resolve: I will stop making friends with the caregivers, I will keep our medications under lock & key, I will not make them take a breathalyzer test before coming in the front door, but on the other hand maybe I should.
Tuesday, July 14, 2015
Annoying People
I should be able to get some peace & quiet in my own home, don't you think? No!!! Lately, the most peace & quiet I get is sitting in waiting rooms of various doctors. The annoying people are at home.
I have prima donna caregivers (not all of them, but enough to matter). They come here & take over & offer opinions on everything. I have long since given up the notion that there is any chance of consistency when it comes to working with my mother. I don't sit quietly & let this happen. I try to tell them, but get responses like "Oh, I know how to get people out of bed" before I get more than a few words out. Anything more direct from me is met with either stony silence or an argument.
There is a never ending parade of not quite, but close to really judgemental people marching though our home. They are irritating is various degrees. I confess that there are actually a couple that I look forward to seeing. However, twice this morning I was asked "What is the matter with you?". The answer is swirling in my head "Maybe you are gnawing at my last nerve". I was also told "You look tired". Thanks a lot for pointing out how bad I look. I could have gotten up earlier than 5:00 AM & taken time to put some makeup on so I wouldn't look tired. I was also told "You seem agitated today". Yes I am, because you annoy me & I have to pretend that you don't.
I also deal with annoying phone calls. Those "Microsoft Windows" scammers keep calling. I think up ridiculous things to tell them such as "I don't have a computer". Would you believe that the guy at the other end of the line actually shouted at me "You are a liar, you are a liar, you are a liar..." until I hung up. He was more annoyed with me than I was with him. Maybe there is some justice.
I have prima donna caregivers (not all of them, but enough to matter). They come here & take over & offer opinions on everything. I have long since given up the notion that there is any chance of consistency when it comes to working with my mother. I don't sit quietly & let this happen. I try to tell them, but get responses like "Oh, I know how to get people out of bed" before I get more than a few words out. Anything more direct from me is met with either stony silence or an argument.
There is a never ending parade of not quite, but close to really judgemental people marching though our home. They are irritating is various degrees. I confess that there are actually a couple that I look forward to seeing. However, twice this morning I was asked "What is the matter with you?". The answer is swirling in my head "Maybe you are gnawing at my last nerve". I was also told "You look tired". Thanks a lot for pointing out how bad I look. I could have gotten up earlier than 5:00 AM & taken time to put some makeup on so I wouldn't look tired. I was also told "You seem agitated today". Yes I am, because you annoy me & I have to pretend that you don't.
I also deal with annoying phone calls. Those "Microsoft Windows" scammers keep calling. I think up ridiculous things to tell them such as "I don't have a computer". Would you believe that the guy at the other end of the line actually shouted at me "You are a liar, you are a liar, you are a liar..." until I hung up. He was more annoyed with me than I was with him. Maybe there is some justice.
Thursday, June 18, 2015
I need to leave at three o'clock
I will not even try to re tell the events of the last 3 days in chronological order. Suffice it to say that on Monday afternoon I could not help my mom out of bed.She did not have the strength or focus of attention that she had earlier in the day. I don't know what,if anything happened. It could be something physical or something to do with dementia. I can often talk her out of these "spells". It didn't work Monday. I called an agency & they were able to send someone who had been to our house before. She couldn't come for about two hours, so I sat in my mom's room talking to & trying to reassure my mom. She was, as she would put it, in a "tizzy". She wanted to go to the bathroom. She was thirsty. I tried getting her to drink a little from a straw, but since she was laying down, it only led to choking. By the time, we got her out of bed when the home health aide arrived, she had been in bed 5 hours. Her back simply can't take that. We got her to the bathroom, cleaned up & in her "sleeping" chair. (recliner). Then I gave her dinner. It was 9 pm.
So I've hired a bunch of extra help. I keep hoping things will get back to "normal". This is going to cost a fortune. I was hoping that any major expense could be put off until August, but I'll just have to be frugal in other ways.
Yesterday a coordinator of one of the programs that is helping us called to see how things were going. I gave her the update. In the course of the conversation something came up that prompted her to warn me not to make friends with the home health aides. I laughed & said she was the hundredth person to tell me that. However,....... three hours later I was exchanging intimate details of our lives with the newest aide. I like her, I really like her. I will never learn.
Then there is the "respite" aide. She is supposed to be here Tuesday & Thursday from 1:00 to 5:00. It took over 2 months to find someone who would come to my side of town. She began with us on May 26. Today was the fourth time she has asked to leave early. What part of "respite" does she not understand? She's not just coming here so I can take a nap. I have appointments. I have places to go & hopefully people to see. (Then I wouldn't need to make friends with the aides, I could see some actual friends.) If I do choose to use the time she is here to take a nap, that's ok too. Trouble is my mom is needing assist of two people for all transfers since Monday. Right now I'm praying she doesn't say she needs to get up for anything for another 25 minutes when the respite aide arrives.
Oh don't let me forget the nurse from hell who rode in here on Tuesday. She was an RN from the doctor's office. I didn't understand why she was coming. We have home health. I was talking to the home health nurse when this other nurse range the doorbell. Since the home health nurse didn't understand why the other nurse was there I handed the new nurse the phone & let the two of them talk. It sounded like dueling nurses having a turf war. After she hung up the phone she began giving orders & asking no questions. She seemed totally confused about my mom's case. She thought the person she talked to on the phone was the physical therapist. She gave a bunch of orders on how to care for my mom's skin that contradicted every other piece of advice I'd ever been given. Nurses often have their favorite product or technique, but it all boils down to keep it moist & keep the pressure off. This woman said to use soap & water which anybody knows is drying. She was wrong about what Medicare would pay for. She said my mom's wounds were not bad enough for home health. Bulls**t! They have been paying for it on and off for 5 years. This woman had painted on eye brows arched half way to her hair line. She was leathery from the sun & she was sweating. It would be putting it mildly to say I took instant dislike to her. I called a contact I have at the doctors office & voiced my displeasure. It wasn't just me who was upset, it was my mom. She said not to ever let her in the house again. Today the administrator from the medical practice called me to apologize. She was very eloquent & sounded sincere. She said the nurse in question was being "called into the office" on Monday. I didn't want this to turn into a big ruckus because I don't want my reputation to be one of "unreasonable expectations". I don't want my mom termed by another doctor because of me, but the woman had my mom on the bed half naked to look at a few wounds on her derriere. My mom is modest. I covered her with the blanket & said we could uncover what we needed to. I think of myself as pretty meek & mild. I only speak up some times. I don't see myself as difficult to work with. Maybe I am though, maybe I am....
The cherry on the sundae? Early this morning my mom said she didn't know who she was or where she was. She asked what my name was. My heart sank further than I thought it was capable of sinking. Fortunately, after breakfast she knew who she was & who I was.
So I've hired a bunch of extra help. I keep hoping things will get back to "normal". This is going to cost a fortune. I was hoping that any major expense could be put off until August, but I'll just have to be frugal in other ways.
Yesterday a coordinator of one of the programs that is helping us called to see how things were going. I gave her the update. In the course of the conversation something came up that prompted her to warn me not to make friends with the home health aides. I laughed & said she was the hundredth person to tell me that. However,....... three hours later I was exchanging intimate details of our lives with the newest aide. I like her, I really like her. I will never learn.
Then there is the "respite" aide. She is supposed to be here Tuesday & Thursday from 1:00 to 5:00. It took over 2 months to find someone who would come to my side of town. She began with us on May 26. Today was the fourth time she has asked to leave early. What part of "respite" does she not understand? She's not just coming here so I can take a nap. I have appointments. I have places to go & hopefully people to see. (Then I wouldn't need to make friends with the aides, I could see some actual friends.) If I do choose to use the time she is here to take a nap, that's ok too. Trouble is my mom is needing assist of two people for all transfers since Monday. Right now I'm praying she doesn't say she needs to get up for anything for another 25 minutes when the respite aide arrives.
Oh don't let me forget the nurse from hell who rode in here on Tuesday. She was an RN from the doctor's office. I didn't understand why she was coming. We have home health. I was talking to the home health nurse when this other nurse range the doorbell. Since the home health nurse didn't understand why the other nurse was there I handed the new nurse the phone & let the two of them talk. It sounded like dueling nurses having a turf war. After she hung up the phone she began giving orders & asking no questions. She seemed totally confused about my mom's case. She thought the person she talked to on the phone was the physical therapist. She gave a bunch of orders on how to care for my mom's skin that contradicted every other piece of advice I'd ever been given. Nurses often have their favorite product or technique, but it all boils down to keep it moist & keep the pressure off. This woman said to use soap & water which anybody knows is drying. She was wrong about what Medicare would pay for. She said my mom's wounds were not bad enough for home health. Bulls**t! They have been paying for it on and off for 5 years. This woman had painted on eye brows arched half way to her hair line. She was leathery from the sun & she was sweating. It would be putting it mildly to say I took instant dislike to her. I called a contact I have at the doctors office & voiced my displeasure. It wasn't just me who was upset, it was my mom. She said not to ever let her in the house again. Today the administrator from the medical practice called me to apologize. She was very eloquent & sounded sincere. She said the nurse in question was being "called into the office" on Monday. I didn't want this to turn into a big ruckus because I don't want my reputation to be one of "unreasonable expectations". I don't want my mom termed by another doctor because of me, but the woman had my mom on the bed half naked to look at a few wounds on her derriere. My mom is modest. I covered her with the blanket & said we could uncover what we needed to. I think of myself as pretty meek & mild. I only speak up some times. I don't see myself as difficult to work with. Maybe I am though, maybe I am....
The cherry on the sundae? Early this morning my mom said she didn't know who she was or where she was. She asked what my name was. My heart sank further than I thought it was capable of sinking. Fortunately, after breakfast she knew who she was & who I was.
Monday, June 1, 2015
Reborn from an MRI tube.
This morning I had to have yet another MRI. This one was to get a better look at a lump on my back which most likely has nothing to do with my cancer. I consider the cancer eradicated from my body. This lump was diagnosed with one of the most painful procedures I've ever had. The Pathologist sticks a needle right into it to withdraw fluid. This is a lump that is on,in, around or some where near a NERVE. He told me that it is most likely benign and he could tell me more after it is removed. He said he could tell me more then & there but he would have to stick the needle in 6 more times & neither of us was for that option. I had already nearly broken the fingers of the nurse who volunteered to hold my hand. It was hard to withstand that pain AND not move. He looked at the fluid right away & came back to give me the diagnosis of Shwarnomma. Isn't that a middle eastern food eaten in a pita pocket? He had to write it down for me. BTW, the reason they couldn't anesthetize the area is that administering the anesthesia would hurt as much as withdrawing the fluid.
The MRI today was the next step. Thursday I see a doctor to go over the MRI, & then I'm guessing I go see a surgeon. If this thing only hurt when someone touches it, I'd say leave it alone, but it's begun to hurt all on its own, so sometimes it burns, other times it feels like I'm being stabbed. They've given me special medicine for nerve pain, but it leaves me unimpressed.
This is all a preface to this mornngs MRI. I'm not going to retell the waiting around beforehand part. I'm going to quote from my journal that I was furiously writing in to try to stave off my anxiety, because I hate MRI's.
"I swear this is the first time I have taken oxycodone for anything other than pain. (I also took xanax.) I just need all the help I can get to get through this. Heart still racing. When will I calm down? Thinking & writing about it probably wrong thing to do- making it worse. Need to meditate- if I knew how- ready to jump out of my skin -not just claustrophobia-scared that this is cancer or that I need another operation or that I'll be a paraplegic - nearly a quadraplegic. Nuts, now I'm crying. It wouldn't be a medical appointment without crying. At least I don't get hysterical or sob anymore.
Stop
Take a breath
Options/choose
Proceed to act
Options-can try hard to calm down, can just grin & bear it, can flee,can hope that med start working soon, can sit here & just worry myself sick...
Proceed to act-breathing, I may have to stop writing. I think it's making it worse. Remember, with only 1 exception that I can remember these people are NICE. That 1 person ...wasn't bad,just said I had cancer before I was sure I had it, remember crying then. Plus I hate to get Iv's"
At this point they came to get me, changing into gowns,getting IV (she got it on the first try!) & finally going in to MRI room. I was situated on table & given instructions. I told them I wanted Diana Krall or Norah Jones to listen to, then they slid the table back & started the concrete mixer. ( that's what the MRI sounds like to me if you throw in a jackhammer & a foghorn). I kept my eyes closed cause I didn't want to be reminded I was in a confined space. I think this is when the meds started working. The tech kept telling me what would happen next & telling me I was doing a good job. At what I had no idea. Then they stopped, rolled me out of the tube & injected the dye for the next part of the test. I asked them to change the musc to reggae. They rolled me back in the tube &this is when the meds really started working or I had a spiritual experience. I don't know. I started thinking about my maternal grandparents & how nurturing they were to me. I felt them both hugging me. I kept still, but started to cry again. Then the test was over & they rolled me out of the tube. Tech gave me kleenex to blow my nose. I asked her why she kept telling me I was doing a good job. She said it was because I held still. I didn't know that was such a great accomplishment.
I ended up being "under the influence" for several hours. Next time I'll stick to xanax. I told this story to someone who said it sounded like I was being reborn coming out of that tube. Hmm...
The MRI today was the next step. Thursday I see a doctor to go over the MRI, & then I'm guessing I go see a surgeon. If this thing only hurt when someone touches it, I'd say leave it alone, but it's begun to hurt all on its own, so sometimes it burns, other times it feels like I'm being stabbed. They've given me special medicine for nerve pain, but it leaves me unimpressed.
This is all a preface to this mornngs MRI. I'm not going to retell the waiting around beforehand part. I'm going to quote from my journal that I was furiously writing in to try to stave off my anxiety, because I hate MRI's.
"I swear this is the first time I have taken oxycodone for anything other than pain. (I also took xanax.) I just need all the help I can get to get through this. Heart still racing. When will I calm down? Thinking & writing about it probably wrong thing to do- making it worse. Need to meditate- if I knew how- ready to jump out of my skin -not just claustrophobia-scared that this is cancer or that I need another operation or that I'll be a paraplegic - nearly a quadraplegic. Nuts, now I'm crying. It wouldn't be a medical appointment without crying. At least I don't get hysterical or sob anymore.
Stop
Take a breath
Options/choose
Proceed to act
Options-can try hard to calm down, can just grin & bear it, can flee,can hope that med start working soon, can sit here & just worry myself sick...
Proceed to act-breathing, I may have to stop writing. I think it's making it worse. Remember, with only 1 exception that I can remember these people are NICE. That 1 person ...wasn't bad,just said I had cancer before I was sure I had it, remember crying then. Plus I hate to get Iv's"
At this point they came to get me, changing into gowns,getting IV (she got it on the first try!) & finally going in to MRI room. I was situated on table & given instructions. I told them I wanted Diana Krall or Norah Jones to listen to, then they slid the table back & started the concrete mixer. ( that's what the MRI sounds like to me if you throw in a jackhammer & a foghorn). I kept my eyes closed cause I didn't want to be reminded I was in a confined space. I think this is when the meds started working. The tech kept telling me what would happen next & telling me I was doing a good job. At what I had no idea. Then they stopped, rolled me out of the tube & injected the dye for the next part of the test. I asked them to change the musc to reggae. They rolled me back in the tube &this is when the meds really started working or I had a spiritual experience. I don't know. I started thinking about my maternal grandparents & how nurturing they were to me. I felt them both hugging me. I kept still, but started to cry again. Then the test was over & they rolled me out of the tube. Tech gave me kleenex to blow my nose. I asked her why she kept telling me I was doing a good job. She said it was because I held still. I didn't know that was such a great accomplishment.
I ended up being "under the influence" for several hours. Next time I'll stick to xanax. I told this story to someone who said it sounded like I was being reborn coming out of that tube. Hmm...
Saturday, May 9, 2015
Reflections
I'm really happy about all of the positive feedback I've received from my family about the "Outlaws" post. There are other stories I'd like to share, including from my maternal side of the family but I need a little time to decompress from the emotions I put into that post. One of my cousins wonders if several of us could somehow put our memories together. That would be a fun project, but how to do it? I read my post & the many facebook comments about the post aloud to my mom this afternoon. She enjoyed remembering & the nice compliments about how cool, thoughtful & funny my cousins think she is. She will absolutely never forget the Waldorf episode when the cousins locked themselves in a room with open windows. Do any hotel rooms actually have windows that open these days? I think the windows were open at the Waldorf that day cause we were feeding pigeons on the little ledge outside the window. I'm surprised they weren't flying around inside the room. Next time I write family memories I have to include the week my family stayed at the Beverly Hills Hotel. We were there for David's medical school graduation. My dad would never have paid for that expensive a hotel but we were compted for some reason. I wish some of my cousins had been there to enjoy a fairy tale stay at the Hotel California. My other most fun memory of being in a famous establishment was when we went to the Russian Tea Room when we were in NYC for Laura's wedding.
On a completely different subject yesterday I went to a gym.
I've actually never been to a real gym before. I've done aerobics classes ( the reason I can't stand Hall & Oates to this day). I've tried yoga a few different times. I went for a while to a "rehab" gym in the '90's after a lot of Physical Therapy on a previous back issue. Just before I found out I should not be climbing hills cause of some spinal problems ( compression fractures, a healing fracure in my sacrum & a pinched nerve) I was attempting to try getting in shape by walking my street which is a steep hill. I was making it twice around our looping street in about 30 min but with every step uphill I could feel my back.The PT's I'm seeing now said it would be OK to do the treadmill if it was flat & the recumbent bike. I was really sweating. Sometimes I get somewhat compulsive & I may have gotten carried away. I also got down on a mat & tried some of my PT exercises. While I'm still in PT, I'll probably only be able to get there once a week, but I'm so glad I got started. Besides the sweat my biggest challenge was figuring out the dashboards on both pieces of equipment. My writing idol, Nora Ephron said that every time she got into shape, something broke. Having had the following in the last 2 1/2 years I can relate: broken arm, rectal cancer, radiation therapy, 2 kinds of chemotherapy, 3surgeries, a kidney stone, a heart problem. Oh, I forgot the broken ankle.
I just realized something strange. I have a full plate of stress inducing realities right now but I may be happier than any day except when I gave birth. WHY? I am making my way through it. I survived 2 years of hellish cancer treatment all the while taking care of my mother. I wasn't always graceful. I cried in doctors offices all over Tucson. I had to deal with a one incompetent doctor who was trying to dictate what my surgeon should do with me & my first therapist lasted one session. She thought I was feeling sorry for myself. She needs to go work in a drug treatment program. I was not a candidate for tough love in the middle of my cancer treatment.
On a completely different subject yesterday I went to a gym.
I've actually never been to a real gym before. I've done aerobics classes ( the reason I can't stand Hall & Oates to this day). I've tried yoga a few different times. I went for a while to a "rehab" gym in the '90's after a lot of Physical Therapy on a previous back issue. Just before I found out I should not be climbing hills cause of some spinal problems ( compression fractures, a healing fracure in my sacrum & a pinched nerve) I was attempting to try getting in shape by walking my street which is a steep hill. I was making it twice around our looping street in about 30 min but with every step uphill I could feel my back.The PT's I'm seeing now said it would be OK to do the treadmill if it was flat & the recumbent bike. I was really sweating. Sometimes I get somewhat compulsive & I may have gotten carried away. I also got down on a mat & tried some of my PT exercises. While I'm still in PT, I'll probably only be able to get there once a week, but I'm so glad I got started. Besides the sweat my biggest challenge was figuring out the dashboards on both pieces of equipment. My writing idol, Nora Ephron said that every time she got into shape, something broke. Having had the following in the last 2 1/2 years I can relate: broken arm, rectal cancer, radiation therapy, 2 kinds of chemotherapy, 3surgeries, a kidney stone, a heart problem. Oh, I forgot the broken ankle.
I just realized something strange. I have a full plate of stress inducing realities right now but I may be happier than any day except when I gave birth. WHY? I am making my way through it. I survived 2 years of hellish cancer treatment all the while taking care of my mother. I wasn't always graceful. I cried in doctors offices all over Tucson. I had to deal with a one incompetent doctor who was trying to dictate what my surgeon should do with me & my first therapist lasted one session. She thought I was feeling sorry for myself. She needs to go work in a drug treatment program. I was not a candidate for tough love in the middle of my cancer treatment.
Thursday, April 30, 2015
The Outlaws
When I was a very small girl,I became acquainted with the term "outlaws". My Uncle Artie coined the term to refer to the men & women who married into the Siegel family. He told my mom that they weren't inlaws, but outlaws. The Siegel family was large so there were lots of outlaws &cousins. My Siegel grandfather &his brother married my Siegel grandmother &her sister( a lot like twins marrying twins) so all of us were proficient at figuring out who was a first,second,once removed etc cousin. Unfortunately I never had the pleasure of knowing my Siegel grandmother as she died suddenly at a tragically young age. My grandfather remarried. Her name was Fan. She was an outlaw I guess but I knew very little about her. I assume she is the one who oversaw the huge spreads of food when the family gathered in their house at 205 Church Street. There were tables laden with everyone's favorite foods. Along with the various varieties of fish,bagels & salads there was always some Rice Krispies for my sister.
We used to have family reunions while my grandfather was still alive. They were held in a park in Lancaster,Pennsylvania around the time of my grandfather's birthday in June. They were large gatherings with many active children running around. I remember barbecues but I don't remember anyone in the family who could do that. It must have been catered. Some of the cousins have talked in recent years about resurrecting the reunion, that would be much fun. Some of my cousins I have not seen in 10 years. This is my fault I know for living in Arizona and not Massachusettes,NewYok,New Jersey, Maryland Pennsylvania or Virginia.
Unclet Artie as I said coined the term outlaw, so he will be the first I talk about. He was so funny,loving and he genuinely liked other people especially children. He always had something funny to say. He never lost his Brooklyn accent so the jokes always sounded funnier because of his delivery. He danced with all of the little girls at weddings& Bar Mitzvahs. He let us put our feet on top of his shoes while we danced. He had a nickname for me. I was "Pammy from Miami". ( I wasn't but it rhymed & it was funny so I loved it). Uncle Artie worked at the Pentagon. We always wanted him to tell us what he did there. Some of us were convinced he was a secret agent of some kind. When he explained what he did it never made any sense. I was sure he was under orders not to tell anyone about his top secret job. I still don't know what he did Maybe someday his kids will tell me.
At least one of the outlaws came with a partner & that would be Aunt Maureen. Aunt Maureen was beautiful (inside and out) & vivacious. To make her entrance into our family even more exciting, she brought her parents with her. I apologize that my memories of her dad are fuzzy, but I think he was the pet wrangler in that family. Àunt Maureen's mother was a force of nature. She too was beautiful. Her name was Aunt Reggie. She was exotic (at least to me). She had a British accent. She taught us how to get the best suntans (while it was still OK to get suntans). The secret was to mix iodine & baby oil, slather yourself up & then sit with a reflector aimed at your face. Both Aunt Maureen & Aunt Reggie were born to be married. They were also never say die matchmakers. They were always dressed impeccably( they also offered fashion advice). I remember Aunt Maureen &Uncle Charles stopping by our house in Illinois on their way back from their honeymoon. They were a lesson in newlywed romance. You could see the love in the air. If any of my cousins have a picture of their wedding party, I was a flower girl. I had to stand still for the longest time during the ceremony & I was gently reprimanded by my mother afterwards because I had been sliding my foot back & forth. I have a bracelet that was a gift to me for being in the wedding that I still treasure & wear. I'm pretty sure it was before Uncle Charles & Aunt Maureen's wedding that the infamous "locked door freak out"of my mom occurred at-- I think it was the Waldorf in NYC. We had connecting rooms. One of us cousins locked the connecting door leaving a bunch of us kids alone in an upper story room with wide open windows. I dont know how we got out, but no one fell out the window. I was honored to be present when Aunt Maureen remarried after being widowed, it was a beautiful wedding in her Japanese garden. I'm so glad Morris Tischler made her happy.
Unfortunately, Uncle Peter is a far away memory, but certain things are imprinted in my brain. He was kind, warm & soft-spoken. I remember loving him so much it hurt. He & my Aunt Anne brought me a native American doll from Oklahoma. Uncle Peter was a physician with, I'm not sure what it was called then, but something along the lines of "Indian health Services". Maybe one of the Ball children can let me know what it was called. He left us much too soon.
If Aunt Maureen came with a partner, then Patricia came with a whole posse. Patricia married my youngest Uncle, so she is only about 10 years older than me. She felt too young to be an Aunt& really wanted to just be called Patricia, but I could never do that. These days skipping the "Aunt" has been easier. She was (and is) beautiful & sophisticated. I looked up to her. She brought along her parents, sister, a few cousins& the most glamorous aunts ever. They were all gorgeous & very well put together. The Siegel family definitely needed their infusion of (I hate the word, but...) CLASS. Patricia & Uncle Stanley took me along to an outstanding cultural experience(Mikhaiĺ Baryshnikov). Sorry to report that no matter how impressed and excited I was, I could barely stay awake due to some late night teen shenanigans the previous night. I don't even remember what the shenanigans had been. By the way Patricia heard of Ravi Shankar before I did.
Aunt Selma was mysterious to me. First of all she never seemed to age. I had a couple of firsts at her house. One of those things was caviar. Oh my goodness, I've been addicted ever since. Aunt Selma also offered fashion advice. I was slow to find my style. I think I needed all the advice I could get. I remember show tunes always being on the stereo. I've been addicted to those ever since also.
I have one last Siegel outlaw & that was my Uncle Myer Nathan. He was a quiet sweet man. Maybe he wasn't always quiet. Maybe it was just when he was surrounded by Siegels. He had a lot of extra family responsibilities due to my Aunt's poor health. From my vantage point he did a fantastic job. I know his children loved him very much.
I had one outlaw on my mother's side of the family. Uncle Bob was a character, not a laugh out loud character, but just very unique. He was an entomologist & taught at St Lawrence University. He had no patience with us kids who were afraid of "bugs". He had a very distinctive voice. I can still hear it. I wish I could see his reaction to a local business here in Tucson "Uncle Bob's Popcorn".
I know some of these memories may be &probably are romanticized a little. Unless I made an outright mistake I ask my cousins to let me keep my fantasies. I also know that everything wasn't always "hunky dory". I know not everyone always got along, but I also know everyone loved one another. I left out someone's 2nd marriage cause it didn't work out & I figure that's not my busines to write about .
Thanks got to Uncle Artie for the outlaws joke. It stuck in my mind all of these years &gave me the idea for this post.
Addendum: My cousin Ellen messaged me on Facebook this morning. She said she liked this post &Å•eminded me that Aunt Reggie's husband's name was David Hayman. She also said it was OK to talk about her stepfather Ralph Klein. Yes, for a while at least my aunt's name was Anne Klein. Ellen told me that Pat(Patricia) used to refer to "Ralph Klein time" as opposed to Siegel time. Ralph liked to stick to the schedule like my dad did. They were prompt/ready to leave at the time they said they were leaving. The Siegels had famously long goodbyes which always put us behind scedule. Thank you Ellen.
We used to have family reunions while my grandfather was still alive. They were held in a park in Lancaster,Pennsylvania around the time of my grandfather's birthday in June. They were large gatherings with many active children running around. I remember barbecues but I don't remember anyone in the family who could do that. It must have been catered. Some of the cousins have talked in recent years about resurrecting the reunion, that would be much fun. Some of my cousins I have not seen in 10 years. This is my fault I know for living in Arizona and not Massachusettes,NewYok,New Jersey, Maryland Pennsylvania or Virginia.
Unclet Artie as I said coined the term outlaw, so he will be the first I talk about. He was so funny,loving and he genuinely liked other people especially children. He always had something funny to say. He never lost his Brooklyn accent so the jokes always sounded funnier because of his delivery. He danced with all of the little girls at weddings& Bar Mitzvahs. He let us put our feet on top of his shoes while we danced. He had a nickname for me. I was "Pammy from Miami". ( I wasn't but it rhymed & it was funny so I loved it). Uncle Artie worked at the Pentagon. We always wanted him to tell us what he did there. Some of us were convinced he was a secret agent of some kind. When he explained what he did it never made any sense. I was sure he was under orders not to tell anyone about his top secret job. I still don't know what he did Maybe someday his kids will tell me.
At least one of the outlaws came with a partner & that would be Aunt Maureen. Aunt Maureen was beautiful (inside and out) & vivacious. To make her entrance into our family even more exciting, she brought her parents with her. I apologize that my memories of her dad are fuzzy, but I think he was the pet wrangler in that family. Àunt Maureen's mother was a force of nature. She too was beautiful. Her name was Aunt Reggie. She was exotic (at least to me). She had a British accent. She taught us how to get the best suntans (while it was still OK to get suntans). The secret was to mix iodine & baby oil, slather yourself up & then sit with a reflector aimed at your face. Both Aunt Maureen & Aunt Reggie were born to be married. They were also never say die matchmakers. They were always dressed impeccably( they also offered fashion advice). I remember Aunt Maureen &Uncle Charles stopping by our house in Illinois on their way back from their honeymoon. They were a lesson in newlywed romance. You could see the love in the air. If any of my cousins have a picture of their wedding party, I was a flower girl. I had to stand still for the longest time during the ceremony & I was gently reprimanded by my mother afterwards because I had been sliding my foot back & forth. I have a bracelet that was a gift to me for being in the wedding that I still treasure & wear. I'm pretty sure it was before Uncle Charles & Aunt Maureen's wedding that the infamous "locked door freak out"of my mom occurred at-- I think it was the Waldorf in NYC. We had connecting rooms. One of us cousins locked the connecting door leaving a bunch of us kids alone in an upper story room with wide open windows. I dont know how we got out, but no one fell out the window. I was honored to be present when Aunt Maureen remarried after being widowed, it was a beautiful wedding in her Japanese garden. I'm so glad Morris Tischler made her happy.
Unfortunately, Uncle Peter is a far away memory, but certain things are imprinted in my brain. He was kind, warm & soft-spoken. I remember loving him so much it hurt. He & my Aunt Anne brought me a native American doll from Oklahoma. Uncle Peter was a physician with, I'm not sure what it was called then, but something along the lines of "Indian health Services". Maybe one of the Ball children can let me know what it was called. He left us much too soon.
If Aunt Maureen came with a partner, then Patricia came with a whole posse. Patricia married my youngest Uncle, so she is only about 10 years older than me. She felt too young to be an Aunt& really wanted to just be called Patricia, but I could never do that. These days skipping the "Aunt" has been easier. She was (and is) beautiful & sophisticated. I looked up to her. She brought along her parents, sister, a few cousins& the most glamorous aunts ever. They were all gorgeous & very well put together. The Siegel family definitely needed their infusion of (I hate the word, but...) CLASS. Patricia & Uncle Stanley took me along to an outstanding cultural experience(Mikhaiĺ Baryshnikov). Sorry to report that no matter how impressed and excited I was, I could barely stay awake due to some late night teen shenanigans the previous night. I don't even remember what the shenanigans had been. By the way Patricia heard of Ravi Shankar before I did.
Aunt Selma was mysterious to me. First of all she never seemed to age. I had a couple of firsts at her house. One of those things was caviar. Oh my goodness, I've been addicted ever since. Aunt Selma also offered fashion advice. I was slow to find my style. I think I needed all the advice I could get. I remember show tunes always being on the stereo. I've been addicted to those ever since also.
I have one last Siegel outlaw & that was my Uncle Myer Nathan. He was a quiet sweet man. Maybe he wasn't always quiet. Maybe it was just when he was surrounded by Siegels. He had a lot of extra family responsibilities due to my Aunt's poor health. From my vantage point he did a fantastic job. I know his children loved him very much.
I had one outlaw on my mother's side of the family. Uncle Bob was a character, not a laugh out loud character, but just very unique. He was an entomologist & taught at St Lawrence University. He had no patience with us kids who were afraid of "bugs". He had a very distinctive voice. I can still hear it. I wish I could see his reaction to a local business here in Tucson "Uncle Bob's Popcorn".
I know some of these memories may be &probably are romanticized a little. Unless I made an outright mistake I ask my cousins to let me keep my fantasies. I also know that everything wasn't always "hunky dory". I know not everyone always got along, but I also know everyone loved one another. I left out someone's 2nd marriage cause it didn't work out & I figure that's not my busines to write about .
Thanks got to Uncle Artie for the outlaws joke. It stuck in my mind all of these years &gave me the idea for this post.
Addendum: My cousin Ellen messaged me on Facebook this morning. She said she liked this post &Å•eminded me that Aunt Reggie's husband's name was David Hayman. She also said it was OK to talk about her stepfather Ralph Klein. Yes, for a while at least my aunt's name was Anne Klein. Ellen told me that Pat(Patricia) used to refer to "Ralph Klein time" as opposed to Siegel time. Ralph liked to stick to the schedule like my dad did. They were prompt/ready to leave at the time they said they were leaving. The Siegels had famously long goodbyes which always put us behind scedule. Thank you Ellen.
Tuesday, April 28, 2015
WE DON'T LIVE IN OREGON (caregiving part umpteen and a half)
Interesting to read my last post again. The interim has been almost chaotic. My mother has had an infection that required her to be admitted to the hospital for IV antibiotics . She then went to rehab for 2 weeks to try to regain her strength. She is now home and healthy though not yet back to her strength and abilities she had before this infection started. Looking back I realize this had probably been going on for at least 6-8 weeks. She is now receiving home heath. There are therapists, nurses & aides coming & going. I am grateful for the help. It won't last forever, but I will try to make the most of it now.
The day my mom went to the hospital was Friday April 3. Her condition deteriorated throughout the day. I was in touch with her Primary Care Provider who was less than helpful. I've blogged before how dismissively they have responded to my concerns, suggestions &questions. I had had it with the symbolic condescending pats on the head they gave me. However I thought we had finally come to an agreement to respect one another's voice. WRONG . I was trying to prepare for the first Passover Seder that night while monitoring & helping my mom. Thank goodness for the wonderful Charlotte who was here to help for part of the day. I won't detail the phone calls back & forth with the PCP at this time , but the gist of the message I got was that I was overreacting. She almost , but not quite told me to give her 2 aspirin & call her in the morning. Just before the third cup of wine at the Seder I called the home health nurse for advice. She told me to take her to the emergency room. The rest of the family agreed & I called an ambulance. The severity of what was wrong assured me we had done the right thing. The PCP called me the next day to see how my mom was. I told her she was in the hospital. She seemed genuinely shocked, but of course offered no apologies. (I think lawyers must teach a class to them titled " Never Aologize").
The reason I am blogging on this subject is that this is instead of an angry letter to the PCP. I don't have to worry about saying it just right, I can just express myself without endless drafts of a letter I would probably never send. I was ready to fire the PCP, I just hadn't made a final decision. On the 15th I received a letter from the PCP firing my MOTHER as a patient. I was angry but not entirely surprised. Frankly what made me the angriest was that she had kicked us to the curb before I had a chance to do it to her. What can I say? One of my least attractive traits is that I don't forgive or forget.
Her letter to me looked like it had been written by an attorney. (I really have nothing against attorneys, but realize this is my second snarky remark about them). It said they were giving us thirty days notice because they could not meet the family's expectations. Damn straight! This was the most honest thing she ever said. My expectations include listening to me as much as I listened to them. I expect that they respect my religious / spiritual beliefs. I expect that my mother be treated no matter her age. I expect infections to be carefully treated. I expect not to be subjected to hockum about weird diet fads & their proselytizing about Oregon's assisted suicide law. My mother has been seeing this PCP & her nurse for about six years. The first time the nurse came to our house she said my mom was on her"way out". I expect them to respect my requests that we not talk about death in our house. My mom wants to live. She has said it over & over & may she live for a long time to come. I expect them to know that a medication should be discontinued because of certain lab results. I expect an honest recounting of recent health problems my mother has had. (A hospitalization 3 years ago was a result of my mom's sodium getting to a dangerously low level while under the PCP's watch. The PCP continually refers to that hospitalization as being because my mom was constipated-She was but that's not why she was admitted to the hospital). Why did I put up with this nonsense ? My mom liked her & I thought by being vigilant I could keep the PCP & her nurse on top of things. All I did was irritate them.
I'm not considering it now but if I ever do decide to sue them, it may be for religious discrimination as much as malpractice. Jews just don't talk about death especially in front of the patient. They questioned me frequently about my Healthcare power of attorney & advance directives. I told them repeatedly that the I WAS my mom's POA,presented proof & more than once explained to them my mom tore up her advance directives over 10 years ago after she saw the effect they had on us as a family during my dad's final illness. They didn't seem to understand the difference between a power of attorney & advance directives. We didn't fit the cookie cutter mold of their expectations.
I would be less than honest if I did not mention that I made a huge mistake with these providers by letting professional/personal boundaries disappear because for a while I thought they were our friends. When you are greeted with a hug, sometimes your good sense goes out the window. I won't cross that line again.
By the way, I had a new excellent doctor for my mom within 48 hours. When I talked to their intake person, I was open what had happened with the previous provider. I expressed my philosophy & was assured that it was their philosophy too.
One last jab at this (I almost said crackpot but that would be wrong wouldn't it?) woman is that I think the attorneys didn't tell her to never leave an angry, incoherent voicemail. I'm never erasing it.
The day my mom went to the hospital was Friday April 3. Her condition deteriorated throughout the day. I was in touch with her Primary Care Provider who was less than helpful. I've blogged before how dismissively they have responded to my concerns, suggestions &questions. I had had it with the symbolic condescending pats on the head they gave me. However I thought we had finally come to an agreement to respect one another's voice. WRONG . I was trying to prepare for the first Passover Seder that night while monitoring & helping my mom. Thank goodness for the wonderful Charlotte who was here to help for part of the day. I won't detail the phone calls back & forth with the PCP at this time , but the gist of the message I got was that I was overreacting. She almost , but not quite told me to give her 2 aspirin & call her in the morning. Just before the third cup of wine at the Seder I called the home health nurse for advice. She told me to take her to the emergency room. The rest of the family agreed & I called an ambulance. The severity of what was wrong assured me we had done the right thing. The PCP called me the next day to see how my mom was. I told her she was in the hospital. She seemed genuinely shocked, but of course offered no apologies. (I think lawyers must teach a class to them titled " Never Aologize").
The reason I am blogging on this subject is that this is instead of an angry letter to the PCP. I don't have to worry about saying it just right, I can just express myself without endless drafts of a letter I would probably never send. I was ready to fire the PCP, I just hadn't made a final decision. On the 15th I received a letter from the PCP firing my MOTHER as a patient. I was angry but not entirely surprised. Frankly what made me the angriest was that she had kicked us to the curb before I had a chance to do it to her. What can I say? One of my least attractive traits is that I don't forgive or forget.
Her letter to me looked like it had been written by an attorney. (I really have nothing against attorneys, but realize this is my second snarky remark about them). It said they were giving us thirty days notice because they could not meet the family's expectations. Damn straight! This was the most honest thing she ever said. My expectations include listening to me as much as I listened to them. I expect that they respect my religious / spiritual beliefs. I expect that my mother be treated no matter her age. I expect infections to be carefully treated. I expect not to be subjected to hockum about weird diet fads & their proselytizing about Oregon's assisted suicide law. My mother has been seeing this PCP & her nurse for about six years. The first time the nurse came to our house she said my mom was on her"way out". I expect them to respect my requests that we not talk about death in our house. My mom wants to live. She has said it over & over & may she live for a long time to come. I expect them to know that a medication should be discontinued because of certain lab results. I expect an honest recounting of recent health problems my mother has had. (A hospitalization 3 years ago was a result of my mom's sodium getting to a dangerously low level while under the PCP's watch. The PCP continually refers to that hospitalization as being because my mom was constipated-She was but that's not why she was admitted to the hospital). Why did I put up with this nonsense ? My mom liked her & I thought by being vigilant I could keep the PCP & her nurse on top of things. All I did was irritate them.
I'm not considering it now but if I ever do decide to sue them, it may be for religious discrimination as much as malpractice. Jews just don't talk about death especially in front of the patient. They questioned me frequently about my Healthcare power of attorney & advance directives. I told them repeatedly that the I WAS my mom's POA,presented proof & more than once explained to them my mom tore up her advance directives over 10 years ago after she saw the effect they had on us as a family during my dad's final illness. They didn't seem to understand the difference between a power of attorney & advance directives. We didn't fit the cookie cutter mold of their expectations.
I would be less than honest if I did not mention that I made a huge mistake with these providers by letting professional/personal boundaries disappear because for a while I thought they were our friends. When you are greeted with a hug, sometimes your good sense goes out the window. I won't cross that line again.
By the way, I had a new excellent doctor for my mom within 48 hours. When I talked to their intake person, I was open what had happened with the previous provider. I expressed my philosophy & was assured that it was their philosophy too.
One last jab at this (I almost said crackpot but that would be wrong wouldn't it?) woman is that I think the attorneys didn't tell her to never leave an angry, incoherent voicemail. I'm never erasing it.
Tuesday, March 10, 2015
Who's the Boss? Caregiving Part Umpteen
Someone I trust (even tho I haven't seen her in a couple of years) told me "They work for you, not the other way around" (referring to doctors, nurses, home health aides, etc, etc....). People have been telling me this for the last eleven years when I first helped my mom coordinate care for my father (of blessed memory). First we cared for my him, then for my sister (of blessed memory) & now I am caring for my mom. I am sometimes a slow learner, but this particular lesson (that I am in charge, not all of the holders of the jobs mentioned above) has been imprinted on my brain finally, I hope. I am stronger & more capable of standing up for what I believe my mom needs. I realize I'm not an expert in their fields & will of course listen to them, but I am the boss, I am my mom's advocate. I will fight for her right to be as independent as she can for as long as she can be. I am tired of being "patted on the head" & mocked as some kind of obsessive- refusing to face reality- daughter. They need to recognize OUR reality, OUR goals & OUR beliefs. I think I might write it up & make it required reading for anyone coming into our home to help us.
Last night, I called the old friend mentioned in this post's first sentence & asked for free professional advice. She offered some suggestions within her practice guidelines(friend or not, a professional cannot offer advice without actually seeing the problem). I called her because my mom was going to have to wait 2 weeks for this kind of official appointment. The PCP wanted to wait until some other test results came in. I understand the theory of this. It's good medicine, although my suspicious nature told me it was being denied because they thought I was not facing "reality" &/or expecting too much. There is also need to suss out problems of cognition vs problems of strength. I don't want my mom getting weaker because I expect too little of her, on the other hand I don't want to endanger her because I am expecting too much of her. I won't go into detail in this post about the problem, but it involves the bathroom. I said that if we could not get help for 2 weeks, then the bathroom was going to be completely unsafe & dysfunctional in the interim. The nurse said, in that case, she would come look at the problem today. I appreciated that but it wasn't good enough. I cannot describe how dangerous & upsetting the situation is/was. I called my friend & told her the problem. We talked a long time. She said she agreed with the PCP about waiting for the test results but understood my frustration. She offered a suggestion. I immediately put it into effect & guess what? It works!!!!! No more crying or arguing from either my mom or me. Also, a lot less stress. I wish I had insisted on this type of consult several weeks ago. Instead I was left on my own & the PCP/Nurse suggestions. This lead to a wasted $110 fix that didn't work. You of course cannot return used bathroom items.
I am so happy right now that every trip to the bathroom does not need to be feared by either my mom or me!
Last night, I called the old friend mentioned in this post's first sentence & asked for free professional advice. She offered some suggestions within her practice guidelines(friend or not, a professional cannot offer advice without actually seeing the problem). I called her because my mom was going to have to wait 2 weeks for this kind of official appointment. The PCP wanted to wait until some other test results came in. I understand the theory of this. It's good medicine, although my suspicious nature told me it was being denied because they thought I was not facing "reality" &/or expecting too much. There is also need to suss out problems of cognition vs problems of strength. I don't want my mom getting weaker because I expect too little of her, on the other hand I don't want to endanger her because I am expecting too much of her. I won't go into detail in this post about the problem, but it involves the bathroom. I said that if we could not get help for 2 weeks, then the bathroom was going to be completely unsafe & dysfunctional in the interim. The nurse said, in that case, she would come look at the problem today. I appreciated that but it wasn't good enough. I cannot describe how dangerous & upsetting the situation is/was. I called my friend & told her the problem. We talked a long time. She said she agreed with the PCP about waiting for the test results but understood my frustration. She offered a suggestion. I immediately put it into effect & guess what? It works!!!!! No more crying or arguing from either my mom or me. Also, a lot less stress. I wish I had insisted on this type of consult several weeks ago. Instead I was left on my own & the PCP/Nurse suggestions. This lead to a wasted $110 fix that didn't work. You of course cannot return used bathroom items.
I am so happy right now that every trip to the bathroom does not need to be feared by either my mom or me!
Saturday, March 7, 2015
Potpourri
Several things are going on...
My mother's strength & ability to stay focused in reality are declining rapidly. I have written about my mother before. (The D word, Lost in Translation, & A Cup of Tea) I feel like I am betraying her by writing about how she is doing. It's private, but I need to write. It is my way of trying to make sense of the incomprehensible. Let's just say that I remember my great grandmother in her final years. She "saw" & "heard" things that were not there. She was not always cooperative. She didn't communicate much. She needed help from my grandmother in the bathroom. She was strong though. She walked around the house without a problem. My mom is having trouble even getting around with the walker. We have the wheelchair easily available now, because some times she needs it. She is capable of far more than she attempts. "I can't" is her favorite expression. If I walk away, she can do more than if I stand there & tell her she can do it. It's hard to decide though. I don't want her in danger, but sometimes if she says "I'm going to fall" it sounds to me more like a threat than a prediction. When I think about what I used to worry about with her, I would give anything to go back to those problems rather than the ones we have today. Will the current problems sometime in the future look "easy" or "mild"? I have been alone with my mom for almost 48 hours, save for an hour when the nurse practitioner came to see her yesterday. I have some relief coming in the morning for a few hours. What I look forward to the most is conversing. When I am away from home or if I'm able to talk on the phone after my mom is in bed, I chat & chat & chat..... I strike up conversations with almost everyone I see. Now I sound like I am whining. This is happening to my mother, not to me. I have so much to be grateful for. I need to count my blessings.
I am finding it hard to interject any humor, even my dark, sarcastic humor into this. I titled this post Potpourri because I intended to discuss other things that are going on. Thursday night the world lost a lovely inspirational woman at the tender age of about 57. I only knew her for a year but will never forget her serene demeanor in the face of an awful illness. Someday I hope to find what it takes to be at peace with a bad situation even while fighting against it. Tomorrow morning I am going to a group meeting where I met this lovely lady. The mood will be sad. Unbelievably, the set topic of the presentation & discussion will be friendship which has been planned for a long time.
We should all just breathe.......& try to be present for ourselves & one another.
My mother's strength & ability to stay focused in reality are declining rapidly. I have written about my mother before. (The D word, Lost in Translation, & A Cup of Tea) I feel like I am betraying her by writing about how she is doing. It's private, but I need to write. It is my way of trying to make sense of the incomprehensible. Let's just say that I remember my great grandmother in her final years. She "saw" & "heard" things that were not there. She was not always cooperative. She didn't communicate much. She needed help from my grandmother in the bathroom. She was strong though. She walked around the house without a problem. My mom is having trouble even getting around with the walker. We have the wheelchair easily available now, because some times she needs it. She is capable of far more than she attempts. "I can't" is her favorite expression. If I walk away, she can do more than if I stand there & tell her she can do it. It's hard to decide though. I don't want her in danger, but sometimes if she says "I'm going to fall" it sounds to me more like a threat than a prediction. When I think about what I used to worry about with her, I would give anything to go back to those problems rather than the ones we have today. Will the current problems sometime in the future look "easy" or "mild"? I have been alone with my mom for almost 48 hours, save for an hour when the nurse practitioner came to see her yesterday. I have some relief coming in the morning for a few hours. What I look forward to the most is conversing. When I am away from home or if I'm able to talk on the phone after my mom is in bed, I chat & chat & chat..... I strike up conversations with almost everyone I see. Now I sound like I am whining. This is happening to my mother, not to me. I have so much to be grateful for. I need to count my blessings.
I am finding it hard to interject any humor, even my dark, sarcastic humor into this. I titled this post Potpourri because I intended to discuss other things that are going on. Thursday night the world lost a lovely inspirational woman at the tender age of about 57. I only knew her for a year but will never forget her serene demeanor in the face of an awful illness. Someday I hope to find what it takes to be at peace with a bad situation even while fighting against it. Tomorrow morning I am going to a group meeting where I met this lovely lady. The mood will be sad. Unbelievably, the set topic of the presentation & discussion will be friendship which has been planned for a long time.
We should all just breathe.......& try to be present for ourselves & one another.
Thursday, January 1, 2015
A Cup of Tea (Trakht Gut Vet Zein Gut)
My mom has a nurse who has been coming to see her here at home for about the past 5 years. I like her very much, but she has one habit that has bothered me. Many health care professionals feel the need to force the patient & family to "face reality". It's gotten to the point with this one nurse that I irritate her by interrupting her little speeches. She tried again the other day. She wanted to talk to me alone before we went in my mom's room. I thought "uh oh". We sat down, she leaned forward, looked me in the eye & said "Pam, you know your mother is a very old woman...". I waited for her to take a short pause before I interrupted her again & said "Just because I don't want to talk about it doesn't mean I don't know it". I went on to use about 3 metaphors such as "I may appear to have my head in the sand but I don't. I just don't want to talk about it"..I think she finally understood!!!! We shook hands. My mom hasn't been out of the house for 2 1/2 years. The only place I want my mom to go is to the emergency room if an emergency happens. We are not going to go to any specialist's offices. S/he would just want to order a bunch of tests which would mean more trips out which would drive my mom crazy & wear her out. The nurse practitioner & RN will continue to see my mom here at home & try to manage her care & medications. We are lucky that there is a lab that comes to the house so that my mom's blood can be tested every few weeks to see if her medications or diet need to be adjusted. In other words, just because my mom is a "very old woman" does not mean we don't want vigilant care. Infections will get treated, fluid imbalances will be addressed & things that can be fixed or improved will be. This nurse wasn't suggesting we ignore my mom, but the message I was getting from her was that she thought I was living in "la la land". (Even if I wasn't facing "reality" I still don't understand this need from medical professionals to beat you over the head with it). I believe in the old Yiddish expression "Think good & it will be good" "Trakht gut vet zein gut". Our home will remain a place to talk about what is going right, what is good, what is optimistic. Words & attitudes affect one's surroundings.
The very day after the nurse visited, I went out for one of my doctor's appointments. My mom was home with our most excellent caregiver Charlotte. When I left it was cloudy & ready to drizzle. When I got home, it was 40 degrees F & pouring rain. Charlotte had a cup of tea waiting for me because my mom had ASKED her to make it as I would be cold when I came home. My mom had told her to be sure not to make black tea, because I'm not allowed to drink that. She is correct. I am not allowed to drink black tea. Pretty good for a "very old woman" !
The very day after the nurse visited, I went out for one of my doctor's appointments. My mom was home with our most excellent caregiver Charlotte. When I left it was cloudy & ready to drizzle. When I got home, it was 40 degrees F & pouring rain. Charlotte had a cup of tea waiting for me because my mom had ASKED her to make it as I would be cold when I came home. My mom had told her to be sure not to make black tea, because I'm not allowed to drink that. She is correct. I am not allowed to drink black tea. Pretty good for a "very old woman" !
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