Saturday, September 15, 2007

135 hospice?

Always there are problems and more problems. Nursing homes don't want my dad because he's in restraints. Because he's not eating. If he was home, he would be eating and not confined, but he can't come home because he is too violent.
Today he was asleep. The aide said he was up all night. That's not unusual. He woke and recognized me, said hi. The aide, nurse and doctor all said as long as the dog is "controlled" he can be brought to my dad's room to visit. So that is good...he is a little dog, easy to hold, but a barker. Hopefully he won't bark when my mom brings him.
He was back in 4 point restraints, with IVs in both arms, still on a drip due to his insufficient ingestion of food and fluid. My mom said yesterday he was out of bed, in the chair, had taken his medicine and eaten, wasn't tied up. Today he had some toast and took his medicine, but I'm not sure why he was tied up again.

I am going to digress here, to something I was going to write about yesterday but never got the chance to.
My dad wants to die. He said so again, last Saturday, when he realized he wasn't going to be able to come home again. He has said so many times: I'll kill myself. Just shoot me. Just kill me. He is aware of his condition in a way people believe Alzheimer's patients are not. I have written about his list of things he knows he can't do anymore.
So it comes down to a moral dilemma. My dad wants to die. He stopped eating. He said, very clearly, "Kill me."
But what do I do? I go there and make him eat. I make him take his pills. Because I am a coward, I guess. Because saying, "yes, my dad is unhappy and he wants to die and I agree," is one thing, but doing it is another. Just like when he was bleeding to death from the cut artery, I stopped the bleeding and we called 911, and the other time I did direct pressure and brought him to the hospital (this same one, actually) rather than let him bleed to death. Helped him without thinking "maybe it would be better to stand back and do nothing."
And now, apparently, the time has come to shit or get off the pot, to use one of Aunt Bert's expressions.

While my mom, my husband and I were there today, a doctor came in. (Her tag said "hospitaler" or something weird like that, but she said "Dr" in front of her name, a long Middle-eastern one.) She tried to wake up my dad to talk to him, but he was pretty sound asleep. I told her of my concern over his tongue, and she said she'd have an oral anti-fungal applied even though she didn't see any signs of a mouth yeast infection, and that that treatment would keep his mouth wet.
She was concerned that he only ate half a piece of toast and some juice for breakfast, along with his pills. She told my mom she wanted to put in a feeding tube. My mom and I both said no. My husband, who doesn't think he has a say in my dad's care, feels that he'll get better once he adjusts to his situation and will start eating again.
My dad doesn't need a feeding tube. Someone patient can get food into him. I can get food into him. Not a lot, but enough to keep him going until we know what's going to happen. Feeding tubes are gross. He can't communicate well as it is; what's going to happen when he has a tube down his throat? He'd totally flip, and once those tubes are in, it's a court order to remove them.
So the doctor jumps ahead, way prematurely in my opinion, and says she wants to stop the glucose drip. She is aware of my father's death wish. She says she'll stop the glucose drip and we can take him home to die and hospice will come in.
First off, everyone has said he can't go home. Second, once he's home, guess what? He'll eat. And regain some of himself. And beat the hell out of my mom again.
I said no, don't stop the drip. Give him time.
The doctor said that we are prolonging the inevitable, that we are torturing him, and we should let him go, that we could send him to the hospice facility in Branford (? I think), that he'd be dead in a week or so.
I felt very pressured and uncomfortable by the whole situation and totally of two minds. The logical mind that says dad is miserable living like this, I would be miserable living like this, anyone would be, and why prolong it. (This is coming from someone whose cat was diagnosed with lung cancer in April and who hasn't put the cat to sleep yet. Although if you saw the cat, you'd understand why.)
The non-logical (emotional) mind says that unless he is beating up my mom, he is more or less content. He loves his dog and cat, likes to sit outside and look at the birds and butterflies and flowers. In that respect, he is not so different from my cancer-cat, who has slowed down, but still eats and purrs and interacts with us and is in no obvious pain. My cat is not living his life to 100% but he's not suffering either, and so I let him live.
My dad has begun to suffer, and it's a direct result of being in the hospital, which is of course is a direct result of his actions last week, hurting my mom and then the doctor and security guards. If he could go home...but he can't. If he could be in a different environment, where he could walk around and see his dog and cat and not be tied up, he wouldn't be suffering. But we can't get him to that place. And whose fault is that? Who do I blame? Those who told my mom to call 911 and have him transported when he hurt her next? Those who promised he would be treated kindly, evaluated professionally and put into a dementia ward (none of which happened)? My mom and I for believing those people?
One local nursing home with an Alzheimer's/Dementia ward sent my mom admission paperwork. $298 a day for Alzheimer's care, about $20 less for geriatric only. Every month there costs more than I make in a year at my current job. And of course, we don't know if they take him when he's not really eating, when he's not been properly evaluated by a trained Alzheimer's psychologist/psychiatrist.

Now I want to take some time to address some comments that have been left by you who are reading this.
  • Suing the hospital: the elder care lawyer said it wasn't worth it. So it's not happening. But I am still taking lots of notes.
  • PCP: I did call my father's PCP. He is also my doctor, my mom's doctor, my husband's doctor, my grandmother's doctor. I was shocked at the apathy of the woman who took my call, who has known everyone in my family for many years. She said the doctor no longer goes to any hospital and has no privileges anywhere. I said that I needed help, that my dad wasn't getting his medicine, and she replied that we had to talk to whatever doctor he was assigned at the hospital. She was barely listening; I know she wasn't taking notes and I am doubtful if any record of my call made it into my father's chart or into the doctor's ears.
  • Alzheimer's foundation: I did call them, the same day I called the PCP. The woman I spoke to was very nice, but she really couldn't help much.
  • Veteran's: My dad was in the military but he dropped out for health reasons. He wasn't in long enough to qualify for anything, by some ridiculous number like a week or two.
  • Masons: Not sure why one person directed me to "attack the masons". My dad is not a mason. He is not in a Masonic hospital. He was going to go into one, but right now they won't take him.
  • Calling the media: I'm physically unattractive and putting me on TV would not be a wise move. What I look like would detract from what I have to say.


Anonymous said...

Bert, I don't know what to say to any of this, but I wanted you to know I'm thinking about you.

Wishing I had some words of wisdom,


Gail Rae said...

I'm the one who said ATTACK THE MASONS and, you're right, I was thinking that your dad is a Mason. Thus, I understand your confusion over me saying that and your reluctance to do so.
I am, though, fairly astonished that the Masonic is barely more than a stop gap and a difficult one to employ, at that. Doesn't make sense to me, whether the person is or is not a Mason. It sounds as though it is part of the system wide problem (meaning the entire system that is in place, at this time, to handle the demented in time of crisis, which would include the Masonic but that would only be a small part of it).
Thank you, again, for continuing to journal about this. I am keeping the DS readers updated, as well. I am also riveted. And, as I'm sure are others, I am helpless to know what to advise. I'd like to be able to wave a magic wand and improve everything immediately for your father, your family, and everyone caught in these situations. I'm sure everyone who is reading along has the same desire. Would that the desire wasn't necessary.

Patty McNally Doherty said...


There was a valuable piece of advice given to me long ago and it's made all the difference in the world to me. Someone said, "What other people think about you is none of your business." What matters is what I think about me. There are many reporters dealing with the same tragedy you're in. It isn't a them vs us scenario. Unfortunately, their job is to report the news, not BE the news. They can't write or report on themselves. They need the experience of others.

And as far as looks are concerned - have you SEEN photos of Golda Meir, Margaret Thatcher, Richard Nixon? Come on.

While none of us are comfortable with the idea of our personal lives being grist for the mill, without mainstream media reporting on situations such as your dads, my dad, our dads, we leave it to the wanderers of the internet to stumble upon our blogs and engage.

Many elderly don't have computers, they can't access our information networks. They are alone, on their own and have NO idea what's coming.

I encourage you to talk with the media because your story illustrates the cliff Alzheimer's pushes us over.

Push back. The institutions you're dealing with, at least, will know they're in the spotlight of public opinion.

But Bert, whatever you decide to do or not do, will be right for you. I believe with all my heart you are doing more than your share by journaling these events. You are a brave woman.

Your writing brings back memories. All bad.

My hearts with you,

e said...

I continue to be appalled at how our healthcare system is failing the demented...

Patty is right. Like you, I would be hesitant to engage the media and the hospital PR department, but it is a great suggestion and I do think it would be your best shot. I understand the "unattractive" comment and hope that I will be able to get past that when it gets to that point with my mom... Would your mom be able to articulate what she would need to if the press focused primarily on her?

To echo Patty's well-written comment, whatever you do will be right for you.

Marilyn said...

Many years ago I had a friend with a mother with AD who had become a danger to herself in many ways. She needed placement and my friend started making the usual calls getting turned down from everyone for various reasons. Finally she contacted the head honcho at a facility that she thought was the best of what was available and explained her mother's condition and stated that she needed to be placed. She also stated - very calmly- that her mother was 90 years old, had worked all her life and contributed to the community during her entire adult life, had paid taxes etc and that now she needed help and she couldn't get it. My friend then stated - calmly - that she wanted an evaluation done and her mother admitted to their facility within 7 days or she was going to contact all of the local TV stations, radio stations, talk shows, newspapers and anyone else who would listen and let them know about the situation. She thanked him for his time and hung up. She followed it with a certified letter that said everything she had covered on the phone. Within 2 days she had a call to bring her mother in for an evaluation. In days she had her placed in a safe enviornment. What's the worst thing that could happen?

Angela said...

My Dad has advanced Alzheimer's. Thank you for sharing your story. I am still keeping mine to myself. Reading about your Dad has helped me a lot. I will continue to pray for you and you r family.

Marvel said...

Sorry to have missed this latest development with your father.

My first question is what were your father's wishes before he was diagnosed with AD? Did he sign a living will or other medical directive? If he did, get a copy to the hospital before some well-meaning doctor puts him on a feeding tube or other artificial support. Did he discuss what his wishes would be if (fill in the blank)? Ask your mother and husband, he may have spoken to them without your knowledge. This should be your guideline.

AD patients are very emotional and can be dramatic. Their social sensors are gone and everything comes out in it's raw form. For example, Grandma will tell us, "Maybe I'll just die and then you'll be happy!" This remark is in response to anything she doesn't like, such as no ice cream. So his "kill me", "I want to die" comments right now, make sense because he is lost, confused and unhappy. Like you said, at home he eats, enjoys sitting in the yard and he's content to have is wife and pets around.

Some of my personal observations:

I am APPALLED at the apathy of your father's PCP's office. This has me speechless.

Has anyone done your father's "evaluation"? What happened to that?

Did you contact a social worker, through Adult Protection Services? They should have one attached to the hospital too, most likely in the billing department. A social worker can do much of the paperwork/research for your family.

Please make a fuss by submitting all your complaints in writing all the way to the Governor! People need to be made aware of these situations because we are all vunerable. Also, the hospital, doctors, and medical community can't be educated without strong motivators.

As for the media shyness, who says YOU have to be on camera? Contact the newspapers, they could use old photos of your father. Have your mother, husband and/or friends give on camera interviews. You can be quoted. Like other's have said, this may be the only way to get your father into a suitable placement instead of the hospice.

Finally, if your family decides to go the hospice route, check to see if they will allow your father to get hospice care at home.

Much love,

Anonymous said...

Thank you for sharing your story.