So. Mom's got Alzheimer's. Now what?

[Flaxbee]

She's already in an assisted living facility (degenerative, undiagnosable pain, must have 24/7 care), receives state aid (her illness wiped us out years ago), etc., etc... no assets to deal with, only the heartache associated with the disease and watching one's parent slip away. I have several sisters to help, good family support systems, etc., and have read a lot about the disease in the last few weeks since the diagnosis, but, does anyone have any insight/information/experiences they want to share? Anything I should know/expect/not-be-surprised-at that they don't tell you in the literature?

[Champ]

1. I don't know

My grandma was recently diagnosed with Alzheimer's as well.

[Nicholas D Wolfwood]

2. I'm terribly sorry to hear this

And I wish you nothing but the best. I wish I had the information you are looking for, but I am sure another DUer will be kind enough to lend a hand in this matter. :grouphug:

[boobooday]

3. I have been reading a lot of neuropsychology lately

One very sad thing that happens to people with Alzheimer's is they lose their ability to narrate -- that is, psychologists are finding how important a kind of narrative cognition is in creating a sense of self. So in a way, they lose their stories and they lose themselves. This is why they forget people and places they have known, and become kind of fragmented.

I'm sorry about your mom's diagnosis. I worked in a nursing home for a while and know how hard it is for families. Now would definitely be the time to take a tape recorder to your mom and just get her to tell as many stories as she can remember.

This loss of "narrativity" also happens to people who have Korsakov (not sure if I'm spelling it right) syndrome. This is what Sam Seder from AirAmerica thinks that Bush suffers from. It is a consequence of long-term alcoholism. If you think about it, Bush has a hard time with narrative. He can quip all day, but he can't string together a story with any kind of coherence. Korsakov's results in people who have been described as "scooped-out" or seemingly without a soul.

http://www.wgoeshome.com

[trof]

4. Alzheimer's drugs: Real benefits despite limitations

From www.MayoClinic.com
Special to CNN.com


Although researchers are developing therapies designed to stop or possibly prevent the progression of Alzheimer's disease, no such therapy is available yet. Instead, current treatments focus on stabilizing the symptoms, improving well-being and easing caregiver burden.

One such treatment option is a class of drugs called cholinesterase (ko-lin-ES-tur-ays) inhibitors, which help improve cognitive function — memory, language, critical thinking, reading and writing. Ronald Petersen, M.D., a neurologist at Mayo Clinic, Rochester, Minn., says that although these drugs are useful, people should be cautious with their expectations. "Cholinesterase inhibitors are not cures," says Dr. Petersen, "but they can provide symptomatic help for some patients, which can improve their quality of life."

When Alzheimer's disease has progressed beyond the moderate stage, cholinesterase inhibitors may lose their effectiveness, although some recent data indicate that they may continue to have some value. They have not, however, been approved for the late stage of the disease. Only one drug — memantine (Namenda), recently approved by the Food and Drug Administration (FDA) — is specifically indicated for moderate to severe Alzheimer's disease. Memantine seems to slow the loss of daily living skills, such as dressing and going to the bathroom.

[welshTerrier2]

5. http://www.alzheimers.org/

sorry to hear your news ...

our healthcare system is totally broken ... we do a horrible job taking care of the elderly and those with diseases like Alzheimers ...

checkout this website and considering contacting them for more info and guidance ...

hope this helps ...

[ewagner]

6. 14 years experience with this.

First, I am sorry to hear the news. I can't reduce the pain of the diagnosis, but maybe I can offer the benefit of my experiences.

If your Mom is already in assisted living and already on State Assistance, a lot of the really hard work is over.

I can, however, offer a few suggestions:

First, get the "Living Will", Medical power-of-attorney and legal power-of-attorney paperwork in order. In some states the documents have to be separate documents.

Next, understand that there is very little that can be done and the disease will take it's course. There isn't (or at least wasn't) a magic bullet to reverse or even prevent the progress of the illness.

When my Mother-in-law was first beginning to slip in the memory department, we explained things over, and over, and over to her and, of course, it never sunk in. We realized that it was totally fruitless to try and correct her so we just "played along" with her perceptions and made sure that she was safe and well-cared for. The people from the Family Assistance Center at the local hospital called this "validation therapy". In other words, if we were constantly correcting Mom, she felt the momentary shame of not remembering or being chastised by her children which was a depressing and in some cases argument generating exercise. When we just "played along" she was happy and cheerful.

She's been in the nursing facility for 12 years. She was able to live alone for about a year after the diagnosis and then in a CBRF (Community Based Residential Facility) for a year after that. The nursing home came rather quickly.

She is now just a zombie. She doesn't walk, talk and her eyes don't make contact anymore. Physically, she is as healthy as a horse.

If you need anybody to talk to please feel free to PM me.

[The empressof all]

7. been there

My mother in law passed away around Christmas. We never got to the point of really needing to force the assisted living. She was extremely resistant to this anyway. I think for us the most frustrating experience was her combativeness. She had an incident of hitting a care giver. It's good to prepare yourself for the hostility. Getting all the powers of attorney both medical and financial in place needs to be your first step. The facility she lives in can help point you to a support group-It helps.

Good Luck and let us know how it's going.

[MadHound]

8. I'm sorry to hear of your pain, my grandmother also had the big A

And it is a painful ordeal to go through. Most Alzheimer's patients start losing short term and most recent long term memories first, and as the disease progresses, the memory loss goes further back. My grams would go out for a drive with us, and could accurately tell us who lived in which house. The trouble was that her list was twenty years out of date.

Get yourself a good support group, you will need it. While the ALF will take care of your mom's physical needs, it is going to be up to you and your family to deal with the emotional needs. Your mother is going to go through depression, extreme anger, child like states at various times due to her having to deal with the frustrations and difficulty of living life with diminishing memory capacity. You in turn are going to have to turn to others to deal with your own emotional difficulties. It hits you hard, very hard the first time your loved one doesn't recognize you. It also would help if you got into a formal Alzheimer's support group, either online or in the real world. There occurs a great exchange of information and caring in these groups that is invaluable.

Become informed. There are many many new treatments for Alheimer's that can temporarily halt or reverse the devastation of the disease.
Also, while your Mom is still lucid and able to make decisions for herself, have that talk with her NOW. You know the one I mean, that serious talk about when to die, what measures to take, etc. Put it all on paper, make it official. Do it now while you still can, for next week it might be too late.

Good luck and Blessings upon you and yours. You are on the edge of Hell, about to go through it, but you will come out on the otherside never fear. Pace yourself, know the limits of your soul in this matter. It will do your mother no good if you are a basket case too. I will be keeping you in my thoughts and prayers.

[ewagner]

10. Good advice Madhound

And I'm glad you mentioned the point about short term memory suffering first. A health care worker described the process of memory loss as like the onion peels: the most recent suffers first.

It's good for families with relatives to remember this because it makes the process so much easier.

[asjr]

9. Same thing with my mom--

We had to sell her house, use up her savings before she could get on Medicaid. She lived with me for a while and when I realized I had to have help I moved, lock stock and barrel to Florida where my sister lived so we could both look after her. She had surgery which aggravated her Alzheimers' and we had to put her in a nursing home. I have since learned 4 other members of her family have it and I live in fear either my sister or myself will get it. You have my sympathy because it is a real ordeal.

[nclib]

11. My mom died this past March.

There are only a few bits of info I can offer.

Be aware of urinary tract infections. When my mom started wearing diapers she had several uti's. She was in pain and couldn't communicate it.

Play music for her. The last few months of my mom's life she was like a zombie except when I played music. I would take in her favorite Cd's and it was just amazing the change in her when the music started. She would actually try to communicate with me. I would sit with her and hold her hand and we would just stare at each other and smile.

And touch. Don't forget to touch her. Hold her hand, stroke her face, rub her shoulders. Touch means so much.

[brook]

12. You've gotten some fine advice here.

I did a couple of years caregiving for an Alzheimer patient in her own home. I have a number of clients now who are in early stages.

All I would add to what's already been said is that no two cases are identical, but it seems to me that there are real 'stages' - i.e., at some point there might be hostility, but it passes. Sundowning is another transient trait. Wandering off seems to last until they physically can't manage it.

I also found that it's not good to underestimate what they do process & understand.

Sometimes I'd sing and dance with this lady - often she could fill in the lyrics I couldn't.
Somebody gave her a manicure which upset her. She'd never been the type to wear polish and was all smiles when I took it off. She'd also get me to 'pluck' her chin hairs. The day her kids took her to 'see' the nursing home they secretly had arranged for - she came home full of fear, begging me not to let them "do that" - she couldn't articulate the details - and they denied it when I asked them. Yet a few weeks later, they sent her off. She had been 'shutting down' in the meantime - and died within 10 days of her admission.

I'm sorry this is so long - and I don't mean that you have to second guess everything - just listen to your instincts. The hardest thing will be losing her piece by piece - and for that you need lots of love & support - some of which I know you'll find right here on DU.

I'll be sending you thoughts of strength & serenity.

[Flaxbee]

13. Thanks, everyone...

I had to make a mad dash to FedEx and came back to lots of good information and very kind emotional support. I truly appreciate it. I'm going to look into a few support groups here and find some for my sisters, if they're willing to go. I live almost clear across the country from my mom, but I just paid a visit to her (one of those hurry-up ones so I could get in a visit while she still remembered me ... she could recognize me for years to come, but I didn't want to let any time pass lest she "lose" her kids soon) but one of my sisters lives in the same town and she has really bourne the brunt of this...

[soleft]

14. My cousin takes care of my Aunt who's had it several years now

It's really much harder on my cousin than it is for my Aunt, who seems to be always in a happy state and sings all the time. Just don't don't leave any food around her that you have an intention of eating because she'll gobble it up.

The hardest thing is that my Aunt is incontinent - she goes to a day care facility while my cousin is at work - I actually think work is the only rest that my cousin gets. And apparently they weren't giving her enough to drink in order to avoid having to change her so often, and she got dehydrated and a kidney infection and ended up in the hospital this past weekend.

So I guess the point is you always have to be on top of caregivers, because I'm sure the majority are great and trying their best, but sometimes they can really drop the ball. When my Mom was in a rehab place after a bad fall we constantly had to checking to make sure everything was being done that was supposed to be done.

I wish you a lot of good fortune, strength and courage as you deal with this.