for those in Florida, part 2

Someone anonymous took exception to Patty's earlier post. I am allowing her the chance to rebutt the anonymous comments.
I understand that she lives in Florida and therefore this might not seem to impact us in New England or elsewhere. But if someone in Florida comes up with a vaccine, a cure, a real treatment that stops this disease in its tracks, it benefits all of us who are living with loved ones in the hell-halls of Alzheimer's and it will prevent others from having to follow us down this road. (Sorry about the mixed metaphor.)
So here is Patty's response to Anonymous' response:

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Bert,

Thanks for giving me the opportunity to respond to this post on your blog. Sorry to bring the discussion here, and if you want to end it after my post, I understand completely.

There are two issues I’d like to discuss.

I, more than most, take issue with the notion of “blind funding”. Pouring our tax dollars into useless pork is indeed something that should be forbidden. When your father is peeing in the planters at the mall because he has no sense of who or where he is, some of us might consider places like the Byrd a necessity, not something that should be dismantled or threatened every year by the legislature. There are NO perfect institutes and we can rant and rave about how bad things are and how we’re all getting ripped off, but when the rubber hits the road, you’re going to pray someone is in a lab somewhere working towards curing Alzheimer’s disease. There is no issue with the science coming out of the Byrd. There is no question as to their ability to generate grant money - they are the only federally designated Alzheimer’s Disease Research Center in the state.

But perhaps “Anonymous” takes issue with the behind-the-scenes politics that built the Byrd in the first place.

I've heard that Johnnie Byrd was a contentious, tyrannical politician. I don’t think there is any argument about that, is there? Many have said it’s the name that causes the inflammation of discussion about the Byrd. My solution to that is auction off the name - one letter at a time - and let the people angered over the way the Byrd was railroaded through the legislature purchase the removal of each letter. If hatred could have a price, each letter of Johnnie Byrd’s name could generate a whopping amount of money to support Alzheimer’s research. By the time it’s finished, there would be enough money collected to fund the Byrd for years.

• The anonymous comments left by people on the mentioned articles are very interesting. Thank you for providing the links. I agree that money spent on lobbyists seems a waste, and PR firms have always made me scratch my head - why do we pay companies to do what advocates are supposed to do? Perhaps the answer can be found by asking the millions of people who sit on their couches, quarterbacking the right and wrong way of doing things without ever getting off their butts to be heard. And while I understand the fear an employee might have by speaking out against their boss, hiding behind anonymous posts seems even worse.

Complaining anonymously is a start, I guess. It offers the cloak of anonymity to be used as protection. But if real change is ever to occur, and if real problems are ever going to be solved, it will take real human beings, stepping forward out of anonymity, to address them.

We are all afraid of losing the roof over our heads, keeping our careers on track, and keeping our kids fed. None of us want to risk losing what we’ve got. But that doesn’t release us from our duty to speak the truth and change things that need changing, especially in the publicly-funded institutions in which our best and brightest scientists work.

Til that happens, I support this institute, its research and its responsibility to push Alzheimer's research forward in the state of Florida.

Meanwhile, anybody want to start the bidding on the letter “J”?

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137: photo of isolation

I took this with my cell phone yesterday and I think it captures my father's isolation perfectly. His speech is almost totally gone. He just looks at you and half-smiles in response to most questions and comments.

for those in Florida...Start Fighting by Writing

A message from The Unforgettable Fund:

Start Fighting by Writing, Florida.

If you are in your 40's or older, and your parents are in their 80's, there is a 50% chance your mother or father will have Alzheimer's disease. Many get the disease younger, and some even get it in their 60's and 70's. But the majority will succumb some time in their 80’s. Because there is no prevention, every single one of our aging parents are at tremendous risk.

Caring for a loved one with Alzheimer’s is overwhelming. Emotionally, how strong will you be when your mother can't remember you're her child? Physically, how strong will you be when your father raises his fist to strike you believing you to be an intruder? Financially, how strong will you be when the bills for their care start to arrive?

Take it from one who's been there - we are NOT prepared to deal with this disease. In my eleven years of caring for my father, I never met a person who said, "Alzheimer's disease? Piece of cake." Instead, it's the telling of horror stories few are willing to talk about publicly. Or the sharing of sacrifices made to keep our loved ones in their own homes. Or the dilemma of post traumatic stress that swamps surviving spouses. For our parents' sake, for our sake, and that of our children, we can’t forget without a fight.

And I have a fight with you, Florida legislature. Why in the world would you allocate $15 million dollars a year to Alzheimer’s research, build the Byrd Center, the largest free-standing Alzheimer’s research center in the nation, fill its labs with leading scientists, set up state-wide collaborations with other Alzheimer’s labs, and then yank $10 million away from it? I understand the need to care for our elderly through outreach programs. Trust me, I understand tightening the belt. But what you’re doing is strangling the only hope there is for defeating Alzheimer’s disease – scientific research. Let my family’s experience stand as a warning – our current population of 80-year-olds are the first wave of an epidemic of Alzheimer’s that will crash into every living room throughout our state if we don’t do everything we can to stop it. Research can and will stop it, without that hope we are in for a nightmare. Heed the warning, listen to your constituents, and protect this research. As the only fighting chance we have, honor your elders and treat this research with the respect it deserves. Get your hands off it.

Be alarmed, voting citizens of Florida. For this kind of political axing to occur, your representative doesn’t understand this disease, or how its playing out in our homes across the state. We can teach them. Please share your story here - patty@theunforgettablefund.com - and I will see to it that every single one of your letters gets to the Governor of Florida. Tell everyone you know, everyone with an aging loved one in Florida, to start fighting by writing.

Please include your contact information. And send this request to as many people as you can.

Start writing, it’s time these stories got told.

Patty McNally Doherty
patty@theunforgettablefund.com

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Please do NOT post your stories here, please post them on Patti's blog or email her using the above link. If you want to cross-post, that's fine, just you've done so.

136 "just go"

My dad is, as of Sunday afternoon, in a very nice home about 20 miles away. They have both a locked/dementia wing and a regular wing. They have him in their regular wing as the locked wing has no beds. He is in a room with 3 beds although only 2 are occupied. A previous resident left behind a nice TV and a fan for future residents to use. The whole place looks like a hotel, so that's what we told him: you are going to stay in a hotel for a while.
My mom, husband and I went up on Saturday to tour the place before we gave approval to move him there. The Director of Admissions gave us a tour. She knew most of the residents' names. The staff seemed busy, but didn't ignore anyone. I saw an aide park a man near the nursing station and say "Mr ___ has to go to the bathroom" and before the nurse could finish paging anyone, someone came to take him.
Out back is a large fenced in yard and patio area with a gas grill. We can bring the dog and cat. We can take my father out for short trips.
The locked ward is a mirror image of the other ward. A glass-walled office faces the doors. Residents congregate there like fish waiting to be fed, poking at the door and peering through the windows into the hall beyond. We had an interview with someone in that room, and one old lady kept knocking on the window and saying she had to leave but she'd lost her key. Another man is high functioning enough that he watches the staff enter the code through the door's window and then uses it on the inside keypad and lets everyone out! So they have to keep changing the code every time he figures it out. He tried to bully us into letting him out. He followed us saying "hurry up, hurry up" and then was coming right through the doors behind us.
Yesterday my mom and I visited my dad there. Because they don't know him yet, they had his bed all the way to the floor, in case he rolled out. They still have the stupid catheter in him but the nurse assigned to him said the staff doctor would be having it removed soon. He was asleep. My mom woke him up and he looked right at her, waved his hand in dismissal and said "Just go." Nice. I shook his hand but he wouldn't talk to me. He went right back to sleep. He seemed still zonked out from all the tranquilizers from the hospital.
His nurse, who I will call Sarah (that's not her name but close enough), told us he didn't eat breakfast, but he ate lunch on his own. She brought him to the bathroom and he went. (They don't have him in diapers anymore.) Sarah seemed to like him and said she is the best nurse there and she would take good care of him. She has a lovely lilting accent, almost Jamaican in cadence, which is very nice to listen to.
We had an interview with the social worker, who asked some pertinent questions and some stupid ones. I have no idea why the hospital had him down as Catholic (he never went to church once in my life) but he kept circling back to that and asking about his faith, how often he goes to church, did he want to see a priest, etc. I kept saying "no" but I'm not sure that got through. At the hospital a priest kept coming to see him and would leave the religious channel on his TV even though we asked that he not come and definitely not change the channel.
But he also asked about what kind of things he likes to do and liked to do, what he watches on TV, how much time he spent alone versus with family, etc.
It's unfortunate that the place is so far away. If I go from work, I'm halfway there, but from home it's almost 20 miles. My mom can go at random times but I'll have to be more regimented, coming straight from work a few days a week. If he continues to be not responsive or won't talk to me I'll go less often. But right now my goal is 3x a week. I am thinking about looking into training my older Ragdoll kitten to be a therapy cat and bringing him on weekends. He is even more of a love-cat than my Zen-Zen was. True to his breed, he is completely floppy when picked up. He purrs constantly and is very mellow. For more on him, go to my pets blog.

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.

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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.

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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.

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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.