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
Tuesday, February 21, 2017
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?
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