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.....

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

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

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?



 

  

Letter to my cousin

Following with a few minor modifications is an email I wrote to one of my cousins this morning.
   
    Hi, want to keep you updated even when some of the news is disheartening.  My mom is literally getting worse by the day.  I was not prepared for that rapidity.  I've never heard of it before.  Every doctor or nurse I tell this to has no explanation, except sometimes this is the way it is.  Just at her birthday 8 months ago she was at the table, wearing her crown,enjoying the meal,company & presents.  Yesterday she started spitting out her pills all of a sudden, seemingly out of nowhere, although she did begin to have trouble getting some of them down last week.  I guess starting this morning I crush them & disguise their taste in food.  Last night I called the pharmacist & found I can crush all but one of her pills.  I will need to call the doctor for a substitute.  Her food has been getting softer & softer.  My brother brought her a root beer float yesterday.  I'm making her shakes & smoothies although she can eat small bites of chicken that the caregiver made in my toaster oven.  We are feeding her most of the time, tho we left a bowl of ice cream in front of her, went to do something else & found her feeding herself! She keeps her eyes closed most of the time.  She is not walking or standing anymore,but only because her fear outweighs her strength/abilities.  Last night she said good night to me as her "sweet darling girl", but had been mad at me most of the day because I would not leave her alone to just vegetate.  I made cookies yesterday in effort to get her to move her arms and hands to feed herself.   It did not work although she enjoyed the cookie when I put pieces in her mouth. The tests in the hospital indicated no strokes.  I realize she has dementia,but some of these symptoms happening so fast make me wonder if some of it is psychiatric.  I'm pretty sure my Great Grandmother deteriorated not only from "senility" as it was called in those days but from a broken heart after my Great Grandfather died.  My mom has at times in her life been "high strung", but she has not been the same since her sister, then my father and then my sister died.  Some of her eccentric behavior in the past decade or so I now see as the beginnings of the current problems.

Sorry to burden you with this, but thought you would like to know.

Love & Hugs, Pam

Boss In Training

Care giving for my mom has been a continuous learning experience.  I cherish every moment we have & everything I'm able to help her with.  She says " I don't want to be a burden to you." I tell her she is not a burden.  It is my honor to be able to help her now.

One thing I did not bargain on was being someone's boss.  I did everything here by myself until I couldn't do it anymore then I hired some caregivers to help me. I have made mistakes.  I mentioned at least one of them in a previous post "I have to leave at three o'clock".  I have made friends with some of the caregivers.  Not recommended.  There needs to be some respect for each other's roles & mutual recognition of the employer/employee relationship which is negated if you become "friends".  I waited too long to replace two caregivers who were not working out.  I kept thinking I would awaken one day & the two of them would suddenly discover all on their own that their performance was lacking. I had too much faith in being "lucky" rather than in directing their work.  On the other hand, I did post a short list of things to do each day on my mom's bathroom mirror.  I appear to have been the only one who read it.  There was one employee who thought she was directing my work.  I let that drag on way too long.  She thought it was appropriate work place behavior to roll her eyes, leave the room in a huff & then give me the silent treatment. Her explanation for this adolescent behavior was that I must not trust her if I kept "interfering".  What can I say to that? Thank you very much for your help & good luck in the future.

One employee pushed me to cut out a list of 10 questions to ask a home care agency about how they select their caregivers. The irony is that she is the one who caused the most problems.  Someday when I write my book, I will go into details, but the problems included fraud, alcoholism & possible theft of some of my mom's anti anxiety medications.

I resolve: I will stop making friends with the caregivers, I will keep our medications under lock & key,  I will not make them take a breathalyzer test before coming in the front door, but on the other hand maybe I should.

Annoying People

I should be able to get some peace & quiet in my own home, don't you think? No!!! Lately, the most peace & quiet I get is sitting in waiting rooms of various doctors.  The annoying people are at home.

I have prima donna caregivers (not all of them, but enough to matter).  They come here & take over & offer opinions on everything.  I have long since given up the notion that there is any chance of consistency when it comes to working with my mother.  I don't sit quietly & let this happen.  I try to tell them, but get responses like "Oh, I know how to get people out of bed" before I get more than a few words out.  Anything more direct from me is met with either stony silence or an argument.

There is a never ending parade of not quite, but close to  really judgemental people marching though our home.  They are irritating is various degrees.  I confess that there are actually a couple that I look forward to seeing.  However, twice this morning I was asked "What is the matter with you?".  The answer is swirling in my head "Maybe you are gnawing at my last nerve".  I was also told "You look tired".  Thanks a lot for pointing out how bad I look.  I could have gotten up earlier than 5:00 AM & taken time to put some makeup on so I wouldn't look tired.  I was also told "You seem agitated today".  Yes I am, because you annoy me & I have to pretend that you don't.

I also deal with annoying phone calls.  Those "Microsoft Windows" scammers keep calling.  I think up ridiculous things to tell them such as "I don't have a computer".  Would you believe that the guy at the other end of the line actually shouted at me "You are a liar, you are a liar, you are a liar..." until I hung up.  He was more annoyed with me than I was with him. Maybe there is some justice.