New here! Caring for loved one... - Alzheimer's Disease & Dementia Message Board

LeighAnn6 · 11-10-2008, 04:32 PM

Hello, everyone. I'm relieved to have found an active forum where I can get a little advice and support once in a while!

My husband's 85 year old grandmother with Alzheimer's has come to live with us. I am 37, have 6 children that I homeschool and I never thought I'd be in a position (at this point) to add in a very disabled grandparent! Quite simply, her funds for the assisted living facility ran out and there isn't enough to get her into another place now. She is from WV and we moved her up here to Cleveland with us last week.

I believe she is near or in stage 6. I've been amazed at the wide cognitive abilities and lack thereof with this disease! One day she will joke and carry on a short conversation...today, since her dr. appointment this morning she has been almost completely uncommunicative and exhausted. In her chair all day. We have a home health aide come in M-F to help in the mornings and will be attempting adult day care 2x a week to see how that goes. Between homeschooling my children and everything else, I don't feel that I can give her the kinds of social activities that might be helpful.

Anyhow, I just wanted to say hello and introduce myself! Can I ask a first question? This will sound so negative, but because she's not *my* flesh and blood I can be a little bit more practical and detached: At what point would you all say that the benefit of dementia meds becomes, well, negligible or unnecessary? She is completely incontinent and does not do much unassisted or without direction, including eat, dress herself or any other self-care, etc.

On a day like today when I can't seem to get her to take her pills, separately or crushed and mixed in with food, I wonder how much longer it will be worth it to try? I'm doing my best to be a loving and responsible caregiver, and I worry that on the occasional days when I can't get a dose in that it's having an adverse effect. Any opinions on this? She is diabetic, also, but I'm only talking about the dementia meds, NOT those that are for her other health concerns. Thanks!

Martha H · 11-10-2008, 04:41 PM

I was told that Aricept and Namenda may work for a few months at the beginning of Dementia, but not even at midstage. Some find that they do help at a middle stage, 3 to 4. Certainly not at stage 6 if that is where grandma is.

I am glad you can be 'detached.' By all means get her into a day care program. She may get little out of it except a chage of scene. But you will benefit from a little grandma-less time.

However, I doubt if they will change her diapers.

In my opnion a nursing home is the answer, and there are ways to get a poor person into Medicaid. Getting an elder lawyer to help is key.

My most recent posting before this one mentions that subject.

Good luck! Stay detached; if you get emotionally involved it can ruin your life. Stage 6 is getting close to end of life. Perhaps at the end Hospice will come to your house to help her. Get your husband, who is her grandson after all, to do a lot of the work! It is not only possible for a woman to do it ... there are a couple of men on this Board who are wonderful caregivers.

Love,

Martha

jagsmu · 11-10-2008, 06:22 PM

I can not answer any of your questions, I am not in the same country, but if you do a search on this board there are many here who have faced simular problems... oh by the way a big welcome to this site , for us caregivers it is the only place where we can let our hair down, cry, whine,complain,support and many other things including the odd laugh......

Gabriel · 11-10-2008, 10:02 PM

Drag up a chair and stay a while LeighAnn. There is a great group of caring people here that are all going through similar situations. They have been my sanity savers!!

There is nothing wrong with a healthy detachment. It will give you a different prespective and probably help you make more rational decisions. I agree with Martha on the Namenda and Aricept. The latest research says that Aricept is more effective in the early stages of the disease while Namenda does show some effectiveness in the mid to late stages.... but there is no research that shows that either are effective for more than a year. If you do a web search on namenda effectiveness or aricept effectiveness you will see the fuzzy conclusions. Since each patient deteriorates at a different rate it is difficult to tell if any individual is progressing slower. They use statistical averages that may or may not reflect what is happening for any one patient. If you read deep enough you also find out that only about 75% are helped at all. Then you have to consider the possible side effects. So it depenends on how long she has been on the medication. If it has been years then it's probably not doing her much good at all.

In my opinion... that is the only hope the medical community can give for this disease that is basically a death sentence with no hope. Desperate for anything that gives hope.... we cling to these two meds as if they are going to create a miracle that the research doesn't support. So give her the other meds first!!!

I am glad you have some help coming in. With all you have to do you will need it. Don't hesitate to grab all the help you can get.... including from hubby.

It is not surprising that after a trip to the doctor's office she was less communicative and exhausted. Anything out of the routine will do that. After a short trip out of the facility Dad will nap off and on for a couple of days. Mom who was the energizer bunny tires after a few hours. Changes are also confusing for them. Mom tends to shut down when she is in overload from the confusions. I have also noticed that Mom and Dad both have good days and not so good day and then those really bad days. So be prepared for anything!!

The one word of advice. If her behavior changes suddenly have her tested for a urinary tract infection. For whatever reason UTI's can cause dramatic behavior changes in the elderly.

Here's your first towel. We use them to wring, to hang on to, to cry into, to pop those that need it, and many other uses. The towels the the most useful thing you can have on an inter galactic trip.... to planet Alzheimer

Welcome to the board LeighAnn

Love, deb

DrewsG · 11-11-2008, 09:32 AM

Welcome LeighAnn, My goodness you do have your hands full. Even at your young age its going to be a rollercoaster ride that will exhaust you. I'm sorry to be negative but truthfull. I just had my Mom here for two days and I'm physically and mentally exhausted. Mom has dementia and its just like a light switch going on and off constantly from the moment she wakes up until she goes to bed. She is in depends and sometimes doesn't realise she needs to go to the potty. Then we have a big mess all over everywhere. This happens when I least expect it. It upsets her so bad that she goes into a zombie like zone. She can't deal with the embarassment of the whole thing. I keep disposable gloves handy. Even in the car I have a complete outfit for her, gloves for me and of course depends.
She is currently in Assisted Living. She loves her apartment. It takes all three daughters and the staff to care for Mom. We are not sure how long this is going to last. It will soon be two years
We tried the drugs for Alz. with Mom and they just made her worse. Changed her personality from sweet to just plain mean!! We give her Zyprexa and lexapro. Minimal doses for both drugs. For her it has worked very well. She saw things and people that were not there, her anxiety was at a high level. This stopped when we gave her the drug.
Every patient is different. Its a trial and error thing.
Come here often with any question or just to connect with someone who understands how you are feeling. Its my lifeline. I don't know what I would do without these wonderful, caring people.
Love ,Chris