raeanna74

I have mentioned my Uncle before on here. His Alzheimers has worsened until he is now in the last stages.

He repeated attempts to eat items that are not food and will continue to try to eat them despite a bad flavor. He gets combatative when he becomes fixated on doing something. He will pick at sores on himself, he will put his coat on to go to church at 2 am. When his 5', 95lb wife attempts to stop him he will grab her and sometimes leave bruises on her. She is grieved that she can't safely care for him any longer but she has realized the need for long term full time care.

Here's the saddening part. EVERY last nursing home and long term care facility that she's contacted either is not equipped to handle Stage 7 Alzheimers patients or routinely "handles" them by medicating them beyond any ability to function at all. I wasn't aware that this was common practice for Alzheimers patients. I can see the risks to the patient are great if they are still walking (which they commonly are able up to the last days) and if they aren't supervised 24/7.

She is now making the heartbreaking decision of sending her husband of over 55 years to a room in a nursing home where they will drug him to the point of being able to even stand. Which is one of the few things he is able to do yet. He has completely lost the ability to speak. He doesn't recognize his wife anymore. He is lost to his love ones now.

I was shocked that this was the only care offered to Alzheimer's patients.

Please keep her in your thoughts.

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veruca

oh Raeanna..I am so sorry..that must be horrible to be dealing with.

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pig

that's awful - how else can you handle severe alzheimer's cases without the severe medication? my greatgrandfather eventually succumbed to alzheimer's, i believe...but then again he was something like 102 years old. i hope y'all can find peace with the decision you have to make, whatever it is.

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0energy0

My grandmother had Alzheimer's. My family placed her in a nursing home, but ever single day, my mother would visit her, clean her, and take care over her more than the nurse's aids. My grandmother could not speak nor move that much in her bed. She was tube-fed for many years. She would have bruises sometimes on her legs, which we did not know where they came from. (i think its the treatment by the nurses.)

If you do decide to place in a nursing home, make sure you check out the place. I did not like the nursing home my grandmother was in, also i disliked the people that worked there. She died 3 years ago in the nursing home while the family was away on vacation. And i do still think the nurses did something wrong to cause this.

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ShaniFaye

Raenna...I can totally comiserate, my grandfather was the exact same way, and my grandmother couldnt bring herself to put him somewhere that he would be medicated 24/7 so she continued to care for him, to the point of no sleep and lots of bruises.

He was 75 and that stage only lasted about 3 months, and when he went to the hospital for the last time he was there 4 days (with a living will for no hyrdation, nutrition) before he died. All they did was give him tylenol and keep his lips moist.

I know its not easy.....I will definately keep your family in my prayers

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c172g

Sounds like my father. He died two years ago from Alzheimers and was in a care home for a total of about five months. My dad was diagnosed with it about three years before he died, and up until the day he went into a home permanently was on a steady decline but was always manageable.

We have a special "Alzheimer's" ward here in northern Michigan. That sounds good, but what the ward is really for is people that are diagnosed with it and are immediately put into the ward. Most of these people were walking, talking, and functioning, albeit on a slightly different plane than the one that you & I operate on.

When we put dad into the ward he was able to walk, but was a little tippy. Also had problems recognizing people, but would go into fits of rage (although at 78 he was pretty harmless when he took a swing at you). When we admitted him, he was far beyond anyone else in the ward of 40 or so. It seemed the ward was for people who were alone that needed care without a spouse to help out.

After dad slipped three or four times in the ward and whacked his head, it was pretty much add drugs to keep him calm & in place.

It's a sad thing to see. On one hand, dad was fine about 60% of the time but you cannot allow someone to go swinging & screaming at their spouse. My mom had to lock her bedroom door at night. On the other hand, you realize that while your father/mother/grandparent is in a different world most of the time, if they didn't administer drugs constantly you might actually be able to have a normal conversation with them...but when would that be?

My family dealt with this together, and one of the books mom had showed a picture of a person in a boat (the Alzheimer's patient) floating away toward a sunset, with his back to his family standing on the shore. It's sad to think of it that way but that is 100% the way Alzheimer's goes. You see small glimmers of light but it fades fast.

Eventually, dad got pneumonia, the doctors told us a feeding tube was the only way to get him nourishment, and gave us the option of simply saying no. Within ten seconds of hearing that, our family 100% agreed that dad would not want the feeding tube & we did the same thing mentioned above. Seven days later he finally passed away. I don't mean to bring everyone down with this story, as I know I'm not the only one to lose a parent, but it was the best thing that could happen. My dad would have preferred someone leave him out in the woods on a cold night instead of going into a nursing home...

I don't envy the place you are in, but I do have a slight "appreciation" of Alzheimers compared to other forms of death. Sounds strange, but I had three years to let my dad know how much I loved him & appreciated everything he did for me.

Not everyone gets that chance.

Demeter

My Grandfather passed from Alzheimers too. Its an awful, awful disease. Raeanna, I hope another alternative surfaces for your family.

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BigBen

I am sorry to hear stories like the ones posted.

Sometimes medicine and science only go so far. There is nothing to say except I feel your (collective) pain, and hope that we can find a cure / treatment for this painful disease.

By painful, I mean the pain of the family and social unit. I don't think the person is in pain.

I'm so sorry.

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Astrocloud

I would suggest that you get good legal advice for his care as well. Depending on where you live... LTC can cost upwards of 600 a day. Medicare has got your back though so (again, depending on where you live) look into the laws governing the care of an adult LTC patient.

liquidlight

Reading this breaks my heart, especially when they're making such strides with treatment for diseases like Alzheimer's.

It's a very small comfort, but there is an indirect way that all of us can help:

http://folding.stanford.edu

Folding@Home is a distributed.net application that analyses protein models for scientists at Stanford University that are hoping to determine the cause of malformed proteins that cause diseases like CJD and Alzheimer's. I run it on my computer at home in the hopes that soon people won't have to suffer through what you're going through Raeanna.

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raeanna74

Thanks all of you for your encouragement. He's been struggling with this for 6 years from when we first discovered it. Technically he is not a blood relative but they have been so close to our family for so many years that we've considered them family and called them Aunt and Uncle. They attend all our family gatherings and we see them often and he will sorely be missed. One of his last congitive moments was at our Thanksgiving dinner at our house this past year. Everyone was here and his words were "I'm thankful for my wonderful wife." I recorded it in an album along with other notes to bring out next Thanksgiving. I know next year will be bitter sweet but it was good for everyone to have a moment like that to remember him by since some of them won't really have any contact with him now until he passes away. As for medicating him - one positive point is that his mind is already gone. He has completely stopped talking or really communicating besides pointing if he wants something that he's fixated on. Medicating him will not prevent him from doing anything at this point besides hurting himself or anyone else. I am, in a sense, relieved for my Aunt because I've seen it pull her down health-wise and emotionally. It will be a big burden off her shoulders and perhaps she can enjoy some more of her own life. She has already dedicated more than 10 years total to caring for her mother, who died of Alzheimers only about 8 years ago and then caring for her husband for so long.

Thank you. They have already realized the cost of the medications and care. They've gotten a lot of help and are not in trouble financially.
My mother is fairly well versed in a lot of the legal things regarding in home care, long term care, medical insurance and such. She and my Aunt (who is in her mid 70's) just went to the lawyers a couple weeks ago to name my Mom as executor of Uncle and Aunt's estate. Some time ago they already drew up their living wills so those things are in place. Their two children won't be much involved. One has already gone over some legal things with my Mom and the other disappeared 2 years ago and hasn't been heard from since.

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uncle_el

sounds like you're a pretty reasonable person.

most nursing homes/personal care homes are understaffed. if i had all the money in the world and was running one, i would have at most 3 patients to every nurse. the few nursing homes i've been to had a ratio of around 6 or 7 patients to every nurse, maybe more. it doesn't sound like a lot, but when most every patient needs most everything done for him/her, it can quickly become draining, both physically and emotionally.

while it isn't necessarily the best care someone can get, using medications to sedate someone so they are not a threat to themselves, others, and will be compliant with whatever needs to be done is the way things are right now.

elderly persons are affected differently, sometimes more strongly, by many medications. for instance, benadryl may help our nose stop running... but in an elderly person, it may cause urinary retention, blurred vision, and confusion... if the person's already confused because of their alzheimer's dementia, a simple medication like that can exacerbate the confusion!


while healthcare professionals know what to do, and how to handle someone with alzheimer's, in practice many times it is a different thing, simply because there are so many patients, and so much to do.

i know that's really not a solution, but it's just an attempt at trying to explain why.

just the opinion of one medical student...



i wish your family the best.

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raeanna74

Well here's an update on our situation.

A bed has opened in the special care unit of the nursing home in our town. Uncle has deteriorated to the point that he is no longer able to walk, talk or eat. He's barely able to move anymore at all and cannot hold eye contact either. He is in stage 7 Alzheimers (there are only 7 stages). He is beyond the care they would be able to give in the Alzheimers care section of the nursing home now.

Aunt has gone to the nursing home today and to social services as well. EVERYTHING including the insurances, social services help, medicare, and nursing home are set up. He will be moving in this coming Thursday.

This is such a relief on Aunt and she feels as though, with everything coming together all at once that this is what is meant to be. It helps her not feel so negative about the decision. Plus lately he's become so difficult to care for that Aunt has been feeling very negative and frustrated about caring for him. It will allow her the freedom back again and yet she can still visit him at any time and so close to home. He will be in a nursing home that is barely more than a 15 minute walk from her home.

Thank you to those of you who have kept them and us in your thoughts. It is a sad thing to see Uncle and yet it's a relief to know that he will be in a safe place, close to home, and cared for much easier than Aunt has been physically able to do. I hope she will be able to regain some of her health and strength as the last few months have been particularly grueling for her and our family as well.

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"Always learn the rules so that you can break them properly." Dalai Lama
My Karma just ran over your Dogma.

maleficent

That's wonderful that it's worked out so well... Continued thoughts and prayers for your family.

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Hash_Browns

reanna I'm glad to hear that things are going a better route for everyone involved. I hope they are both able to find peace with the happenings going on. I also think it's wonderful that your Aunt has such a great person to be able to lean on in these times. I will keep you and yours in my thoughts

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analog

On a different note... going back to your original post... it's a horrible disease, and there's not much they can do once 7 sets in.

Even if he's still able to walk, he's a danger to himself because he could suddenly stop walking at any time. Also, he is a danger to himself because, as you said, he eats things that arent food and picks at his sores... unfortunately, sometimes the only way to help is to make them safer, calmer. Albeit drug-induced calm, but it's better than living out your remaining time being in pain because you hurt yourself, and not knowing why or how not to do it again...

I'm glad everything is coming together, though. Now you can start to remember him as he was as a person, not having to concentrate so hard on how he is currently.

Cynthetiq

damn... my best friends MIL is in dementia... while it's not exactly the same the "feelings" of the family members are about the same...

my thoughts are with you. good luck!

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Craven Morehead

What a terrible disease. Such a toll on the family. My thoughts are with you.

Not too far from where I live is a nursing home that specializes in Alzheimers care. The visitor's parking lot is nearly always empty. That's really sad to see whenever I drive by.