XP: Alzheimer's

sweetpea0911

I have posted once or twice vaguely referencing the fact that my grandfather has Alzheimer's and dementia, and that I am one of two full-time caregivers for him (my uncle is the other).  Several people had commented before that they have had experience with these patients and I was hoping maybe to glean some information off anyone who has  it.

We took him to the doctor this morning, and the doctor suggested putted him on Aricept to help improve his memory function.  We're trying to do some research on the drug ourselves, but there are many mixed reviews from doctors on whether or not it's actually beneficial and very few testimonials from actual users or users' families.  

Has anyone had any experience with this drug, good or bad?  It's pretty expensive with my grandfather's limited medical coverage, but we're willing to make it work if it will actually do some good.  Thanks in advance!  

(Posting this over on E, as well as my club board, to see if I can reach other people)

staceytaylor0704

I'm no help with this subject, just wanted to say thats really sweet that you take care of him. I don't think I could handle that.

SarahPLiz

I don't have any experience with that drug, but I do have Alzheimers and dementia on both sides of my family (FI drew the black bean there). If you ever need support, let me know. 

Wrkn925

I have no advice to offer on that subject.  My grandfather didn't show signs of dementia until the last couple of months of his life, and I think that had more to do with infection, lack of sleep and basic confusion from being in a hospital for months at a time.

I just wanted to say, I cared for my grandfather in his last year of life.  I was not a primary caretaker, I was a releif person for his adult children.  I would stay overnight in the hospial with him, because he was kinda losing it and would pull IVs and caths out.  It was hard, and I know what you are doing is difficult.  But, I look back on those hard, hard nights of being up at wee hours, and still cherish them.  They were difficult, but I'm glad I helped.  I'm glad I was there for him when he needed me. 

This got more morbid than I intended, sorry.  I just want you to know you are an amazing person for putting such a high priority on your grandfather.  I'm sure he and the rest of your family appreciate your help.

I must reccommend, if he takes a lot of energy, that you seek out additional help so you don't get run down.  We split the duties between about four people, and we were all exahusted at a few points, I can't imagine doing it with two.

Edited

sweetpea0911

Thanks ladies.  It's not easy, but I love him very much - we were born on the same day of the week, same day/month, 54 years apart, and we've always had kind of a special connection.  I sometimes wish we could break up the caregiving a bit more, but my father (the only sibling) doesn't want anything to do with it, and my sister is a full-time college student, so its just my uncle and I (my parents are divorced).  It's okay, though, we'll make it through. Thanks for the support, girls.

britt2112

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_snarky-brides_xp-alzheimers?plckFindPostKey=Cat:Wedding BoardsForum:17Discussion:d04fa127-b250-4391-ac55-a7f0d9da0dc0Post:2300df55-fb0e-4d4e-a888-befe92f23c31">XP: Alzheimer's</a>:
[QUOTE]I have posted once or twice vaguely referencing the fact that my grandfather has Alzheimer's and dementia, and that I am one of two full-time caregivers for him (my uncle is the other).  Several people had commented before that they have had experience with these patients and I was hoping maybe to glean some information off anyone who has  it. We took him to the doctor this morning, and the doctor suggested putted him on Aricept to help improve his memory function.  We're trying to do some research on the drug ourselves, but there are many mixed reviews from doctors on whether or not it's actually beneficial and very few testimonials from actual users or users' families.   Has anyone had any experience with this drug, good or bad?  It's pretty expensive with my grandfather's limited medical coverage, but we're willing to make it work if it will actually do some good.  Thanks in advance!   (Posting this over on E, as well as my club board, to see if I can reach other people)
Posted by sweetpea0911[/QUOTE]

Sweetpea,

First, you have all the respect in the world from me for being a primary caretaker of your grandfather. On to Aricept. Aricept should be used cautiously in patients with a history of asthma or COPD, so if your GF has these disorders he should probably not use this medication. Also Aricept is to be used in conjunction with another medication called Namenda. These medications do not cure Alzheimer's but are to be used to slow the progression of Alzheimer's. There is no cure for Alzheimer's at this time. Supportive care is all that can be done at this time. I'm not trying to sound harsh, just want to show you the best information I can.

I can't remember his name or the name of the show at this time but one of the football coaches from a college down south, maybe Georgia or Alabama, had a wife that had Alzheimer's and this documentary showed how the family cared for her and different things that they did. It was really interesting to watch how they handled this situation. I will try to remember the name of the show and get back to you.

<strong>Edit: </strong>His name is Frank Broyles, he was the AD for Arkansas and I think I must have seen him on an episode of Oprah or Dr. Phil or something like that. Anyways, he and his family are amazing!! They have a book out called Coach Broyle's Playbook for Alzheimer's Caregiver's. Check it out if you can, I think it would be very helpful!!

Hope this has helped! Good luck with your grandfather and don't forget to take time for yourself as well. You will be much more of an asset to your family if you are pampering yourself some too!!

This is not to be construed as medical advice. This is just simply my opinion.

fairbanksgrrrl

I'm a co-caretaker with my H for his dad who suffers from probable Alzheimer's.  He tried Aricept for about 2 months, but decided to discontinue because of the side effects.  I don't remember what they were (this was a couple years ago) but he found them intolerable. And since we had never seen a real benefit, there was no reason to continue.  Since then, he also tried Exelon in the patch.  Fewer side effects, but we hadn't noticed a difference in memory function either, so he decided to stop taking it.  We've had luck with other treatments that are more specific to his lifestyle and health history. You can PM me if you want to know more. 

I know how hard this can be, believe me.  Good on you for doing it.  It's not an easy life.

Wrkn925

..And the newbs save the day with valuable information.   This is nice.  Hi.

LauraT25

My grandmother was too far gone when Aricept came into the dicussion, but at least 8 of the other people in her assisted care facility were on it, and I spoke with the families quite often.   As you said, it was a mixed bag.  Two of them said that they saw marked increases in memory function, some of them thought that the degeneration had at least slowed, and others said they saw no improvement and stopped it, or stopped because of side effects.  I think it was about half that stopped it.

If your doctor is suggesting it, it seems like he's a candidate, and I think it might be worth a try.  It's unfortunate that the cost is an issue - you might want to contact the company that makes it, since they sometimes offer assistance.  I can understand why you might not want to go through the trouble, though, since many people experience side effects and/or no improvement.

Wrkn925

Oh, what Laura said about contacting the company.

We needed a really strong antibiotic that could really help my grandfather, but it was like $2k a week. The doctor contacted the manufacturer and told them this, and they gave it to us. 

sweetpea0911

Thank you so much ladies.  I've added those medications to my list of things to research.  We're supposed to go back to the doctor next week to talk more about the medications, so we're hoping to have a clearer idea by then.  I'm also going to try and hunt down some info about lowering the cost with the manufacturer.

Again, thanks for everything, I really appreciate it.

K&J64

Sweetpea,

First, hats off to you and your uncle for caring for your grandfather, it's not easy. My grandmother has Alzheimer's/dementia and is now living in nursing home but my mother cared for her for over 10 years at home, until it became too much and a detriment to my mom's own well being to care for her any longer. I don't know if my Grandma has specifically ever been on this drug, it may be too new given what stage she is now in for it to have been appropriate. I do know she was on some medication that was supposed to slow down the memory loss and I didn't really seem to help to be honest. She didn't have any bad side effects, maybe just some drowsiness.

For the most part it's important to discuss the benefits and risks with your grandfather's neurologist. If he's not seeing a neurologist yet you should look into it, they're really the most qualified doctors to be treating an Alzheimer's patient. Medications often just need a trail period to see how the individual will react. A good doctor will only recommend putting him on a medication because they feel the benefits outweigh the risks, but do your research and bring a list of questions you may have that relate to any medications they suggest.

I don't know how far along your grandfather is, but if he's in the early stages, keep him social. Have him attend senior day care or a club where he can interact with others. Have him play mind games to keep those neurons firing. As for you, try not to get frustrated, it's so hard to watch someone you love slip away from Alzheimer's, just do your best to care for him. Good luck, he's so lucky to have a wonderful granddaughter like you!

rxjen

I think that the side effects associated with Aricept are worse than the actual good that this drug does. Exelon is a very good choice but you will have to discuss what is the best course of therapy for your grandfather with the MD

I found a 30  Day Free Voucher on their website, you may want to read the terms since some Pharmaceutical Voucher Claims reject either because they do not accept Part D patients or because the patients do not have an HMO or PPO....HTH

http://www.altsampling.com/Aricept_1068083/Documents/WebDOCAWC993654720LVAWC547encr.pdf

sister2groom

Yeah with medications being so specific so specific for certain people I would talk to one or more doctors on the subject because medications depend so much on individual body chemistry.

But I just also wanted to say I'm so sorry you have to deal with, one of my best friend's mom's had Alzeheimer's so I've seen how tough it can be. I'm so happy for your grandfather that he has such an amazing granddaughter in you. I'll be praying you find some good support for you and your family. Your sister may not be able to be a caregiver, but she may be able to be available for some late-night phone calls of support.