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
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