Saturday, April 10, 2010

TRANSITIONS, DECISIONS AND BUREAUCRACY

"These last couple of weeks have been difficult ones. My mother's eldest sister, quickly approaching 93 years old, had a serious decline in both mental and physical ability. Long a widow and without children, Theresa depends on my sister and me. Until recently she has been amazing.

Barely four-and-a-half feet tall, Theresa has always been a dynamo. She hasn't had an easy life but she has been blessed with longevity and good health. Born at the end of World War I, the first child of young Italian immigrants, her birth mother died when Theresa was two years old. A couple of years later my grandfather remarried and there were six additional siblings. She has out-lived her husband, three of her younger siblings, nearly all of her friends and survived breast cancer. She has always handled adversity with admirable grace and dignity.



Decision time has arrived.

Theresa can no longer live on her own.  This has become obvious.  For her own safety and regardless of her desire to remain independent, we must intervene on her behalf.  Just as I demanded she give up driving after she had an auto accident in her mid-eighties, now I am charged with the task of arranging for her care.  Home care or nursing home?  Those are the choices.  Both are expensive.  Both have their appeal and detractors.  Where do you even begin?  

Because of her declining health I chose to begin with the physician.  I arranged for an appointment and a consultation.  Having been through a similar situation with another of my mother's sisters, I know that there is a Medicare provision for a period of nursing home stay following an approved three-day minimum hospital stay for a qualifying condition.  This Medicare benefit is up to a maximum of 110 days.  That is enough time to make plans, figure out finances and place her home on the market for sale.  

After an unnecessary [for me] lecture on caring for the elderly from the unpleasant doctor, he suggested I take Theresa directly to the emergency room where she could have tests and get necessary treatment after which he would check-in on her and determine a course of action.

This is where the bureaucracy begins....


Upon arrival at the local hospital emergency room, my aunt is met by the ever-competent and usually pleasant staff of nurses, physician's assistants and physicians.  This is familiar territory for me having taken my mother and her siblings here too many times over the past several years.  Everyone looks familiar to me.  Some of them ask me how my mother is doing.  They quickly begin testing, poking, prodding, ex-raying my aunt.  I begin answering questions, filling out forms, offering documents and signing, signing and signing.  I am well aware that I will be answering these same questions many more times over the course of the next few days.  It seems that information is never passed along with the patient.  It's like being in a phone chain with the local cable-TV provider and being asked repeatedly for your phone number.

After several hours of stabilizing her blood pressure, blood sugar and hydration, Theresa's ever-charming physician has arrived to review her condition and chat with us.  

"Fasten your seat belts.  It's going to be a bumpy night."
bette davis [all about eve]

"You know she can't take care of herself" he begins with the obvious. "I'm going to try to admit her but there's not enough wrong with her, the tests aren't bad and she's not going to qualify for that Medicare thing". We're having this conversation while she is receiving three different IV's and her blood pressure is near stroke numbers.  At this point I'm fairly certain mine will be too.

Theresa finally gets admitted to the hospital.  I can have a night of rest [from this obligation] knowing that she is being taken care of.  At promptly eight the next morning the hospital case worker called me.  Theresa is being discharged and she's not qualified for the nursing home.  "Oh, and she can't be left alone" I'm reminded.

"Now what" I ask aloud to the phone after the case worker has already hung up on her end.  I begin calling someone I know at one of the local facilities.    "Let me see what I can do" I"m told.  That hope held out for about an hour until I get a call saying nothing can be done except Theresa can go into the nursing home as a private pay from day one which requires two months payment in advance, roughly $24 thousand dollars.  Not a chance I'm forking over that kind of money with no notice on a Friday if at all.

Hours pass with no contact from anyone regarding Theresa.  Meanwhile I'm trying to come up with any solution.  This is a real problem now.  I certainly can't take on full charge of my aunt since I am already more than busy taking full-time care of my own mother.

Half past three arrives and my sister and I head to the hospital, still no good plan in place.  I'm thinking that I might just plain refuse to take her home.  "What are they going to do?  Put her in a cab to get herself home?  I doubt they want to risk that liability.  "Damn it, why haven't I heard from anyone?"

When we get to my aunt she is sitting in her chair with her hardly-touched lunch in front of her.  She looks terrible and she is still connected to at least three IV's.  "Oh, she's doing great" the nurse reports.  "Really?" I ask wondering if she simply means "she's 93, breathing and talking [a little]".  Then the nurse, who is really very nice and sympathetic, continues to tell us that they had to give Theresa "some insulin" and she's not walking on her own and "she's been vomiting a couple of times".

Sounds to me like she's perfectly ready to be discharged.  All I have to do is get her home, have IV's set up, learn to monitor her blood sugar and administer "some insulin".  Oh, and don't forget the vomiting!

After ninety minutes the case worker arrives to chat with us.  I express my apprehension and I think I made some sort of joke about sending Theresa to the SPCA "because if they can't find a home for her they euthanize."  Note to patient advocates:  "case workers" do not have a sense of humor and get nervous when you mention the term "euthanize".

"We would never just send a patient home without a plan" explains the CW.  "Theresa is here for the weekend but after that you have to have a plan.  Oh, and she's still not going to meet the Medicare criteria".  I explain that I'm thrilled that she will be safe for the weekend but we are still faced with the problem of what to do.  "Monday is a long time away" she explains "considering your aunt is 93 and all".  I'm told that there will be another case review on Monday and maybe "we'll be lucky and Theresa's health will have declined enough for her to qualify for care".

This is the pathetic state of our current health care system.  How can anyone say that overhaul was not needed?  We're reduced to praying that a 93 year old woman gets sicker in order to get help.

We visited Theresa this afternoon.  She's comfortable although she's not eating.  Today's nurse was very curt but did inform us that they had taken more ex-rays and an ultrasound of Theresa's abdomen since she's still vomiting.  

"Hey, maybe we'll get lucky!" I'm horrified to have repeated. 

Theresa is thoroughly ready to go to a nursing home.  I discussed her situation with her today and explained that if she goes home she will have to have a lot of care and that it would only be in the interim while other arrangements are made.  "I don't want to go home" she declared.  "At least at the nursing home there will be company and things to do I'll have a nice room".  There's the Theresa we all admire.  Ever the optimist.  Ever the pragmatist.  One more challenge that she will face with grace.  She also has the comfort of knowing that we are doing what is best for her and that we are here for her whatever life brings.

I hope we come to an easy solution on Monday but we will do whatever we must to keep her safe and comfortable to best of our ability.

"We're all stumbling towards the light with varying degrees of grace at any given moment."  
bo lozoff


5 comments:

  1. Cheryl DeLaVallierreApril 10, 2010 at 4:14 PM

    Christopher, you certainly have had your hands full. I am praying for you all. It's not easy "working" as a caregiver and it is "work", mentally, physically, and emotionally. I was thinking of something before I even finished reading the blog and then you mentioned it yourself, "what if you just refused to bring her home"??? But then I wondered if you were her power of attorney, and thought probably yes, and that they would come at you hard to conform to the suggestions they were offering, which from what I read weren't any help. :) It does sound like a nursing home maybe the way to go, especially since your Aunt wants to go, and if she has the money they you may have no other choice, as you said, YOU CAN NOT take on anymore than you already are!!! I hope it works out on Monday, please let us know the outcome. It's a terrible thing when you think "if only they would find something", because unfortunately that is the only way to get help. As I said, not easy being a caregiver. Hang in there, pamper yourself even if for just a few minutes and come to fb to vent if you need to. Your friends and I are listening!!!!!! xoxo

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  2. This really sucks.
    and some day, we'll all be in the same situation.
    scary.

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  3. Christopher, I feel your pain. The system never ceases to amaze me, and not in a good way. My mom is still in "short term rehab", which means that medicare is still paying at least partially, since we've passed the 20 day mark. I am grateful she is still considered short-term, although I know she will never go home. At times I feel they are just warehousing her until she becomes private pay. I'm so glad your aunt still has her spirit; it's so sad when that goes, as in my mother's case. Good luck as you navigate this mess. You have many people sending you good thoughts and prayers. Your aunt is lucky to have you as her advocate.

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  4. God help you all. We will be praying for a reasonable (read miraculous apparently )result fro the hospital staff. My father used to sing a song "Remember while you are young that the day to you will come when you'll be old...." Guess the medical world needs to learn the lyrics and take them to heart.

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  5. Chris, I can understand exactly where you are and how exhausting this process is. First and foremost is your Aunt's well being. I am praying for all of you. Been there myself, arguing with therapists, breaking down in front of nursing home social workers and nurses, etc. etc. Not a pleasant situation to be in. Your Aunt is very fortunate to have you in her corner fighting this battle for her, as you are to have her wonderful personality and spirit surrounding you.
    Thoughts and prayers go out to you!!!!!!!
    Joan Fiore

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