Saturday, June 19, 2010

A Conversation with The Alzheimer's Association

About two days after my last post, I called the Alzheimer’s Association and had a wonderfully informative talk with an advisor from their 24 / 7 hotline. What a great resource! The numbers for those who might need them are:

24/7 Helpline
Contact us for information, referral and support.
tel: 1.800.272.3900
tdd: 1.866.403.3073

I spoke about the dilemma I was facing with my mother – her confusion about where she was going was when it was time to go back to the rest home.

The advisor said that taking her to my house so frequently could in fact be contributing to the confusion because, as we know, Alzheimer sufferers do best when their surroundings stay consistent. However, she was surprised that Mom wasn’t new to the rest home, that it had been 6 months since she first arrived, and hence, enough time to get acclimated to her surroundings, as much as one can with the disease.

Be that as it may, she had three suggestions:

1) Keep mom at the home 6 out of 7 days.

2) When I visit during those 6 days, I must make the visits meaningful, i.e., do something specific with her like play cards, join in on an activity, go for a walk, take her shopping, etc.

3) Take her ‘home’ just one day out of the week.

It has been 10 days and I have not been able to stick to the 6 out of 7 days, but I have done better, taking her here only three times instead of five. I have also made the visits at the home more lively. However, I am finding that mom can do less than I thought. We tried playing cards, and though she used to play every single week, she could not remember how to play gin rummy or any of the poker games.

Our walk to the park where I took Frances was lovely. We watched a young man exercise his Australian Cattle Dog. He had his dog perform many tricks for my mother and she was delighted.

We had a spa day where I took her for a manicure and pedicure. She went through her diaper onto her pants. I had to ask for a towel so that she would not further wet the customer chair. And though she has had a manicure several times, she thought this was her very first. That’s a benefit to the disease. You relive the things you love for the first time over and over again.

But, I have gotten two calls from her this week, convinced it was I this time who needed to be picked up from school. And though she was speaking with me, she was also speaking of me, “Lisa, who is picking up…who’s picking Lisa up from school?”

Again I used Josie and again it worked.

There is no question her Alzheimer’s is progressing. And I’ll get better at trying the suggestions made by the Alzheimer’s Association. It is just difficult not taking my mother to the place she feels most safe and most comfortable. I also find that she can become more delusional when she stays longer periods at the home.

Damned if I do and damned if I don't. There seems to be no right and no wrong to this disease.


  1. So very frustrating for you. Follow your heart but temper it with your head. Or maybe it should be 'follow your head and temper with your heart' I think it does call for a bit of both. I've added your blog address to the lis of blogs I follow on my blog. Hope it brings you some new readers.

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  3. Lisa, I think you did a very smart thing in calling the Alzheimer Society. I found that, out of all the resources at our disposal for my father, it was the single best source of useful advice and comfort. My husband and I attended a monthly support group for five and a half years, from the time of diagnosis until one last visit after he died six months ago. Not every single piece of advice was suitable for every single situation, but in general they have the advantage of years of experience with thousands of caregivers just like us. Good luck and best wishes for you and your mom.

  4. Hi Lisa,
    Found your blog via another. Always looking for others who understand. My father had early onset AD and passed away last year in May. I was his caregiver for 6 years.
    I too experienced something similar with trying to find things to do with him. He was great at Blackjack and was able to still play even with moderate AD. When those became frustrating for him I went to simpler games like Jenga or those puzzles that have very few pieces.
    I also found this article helpful when talking with my dad and trying not to get frustrated myself.

  5. Peaches, thank you for visiting and commenting. I never even thought about bringing along games that are simpler! Makes perfect sense! I have some children's games in my closet for my nieces. Perhaps I could bring those along. THANK YOU! The article was fantastic! I always play along with what my mother is saying but what a great idea to take it a step further and make it something we can do (like the man who made a list of what not to do in the house with the woman). Thank you so very very much!

    May I ask if your dad lived with you for the six years? I struggle with having my mother come back here so I can care for her 24/7.

  6. This disease is so awful and I know you are going through a trying time. My prayers are with you.

  7. Thought I had replied the other day...guess I hit the wrong button. Yes, my father lived with me for 6 years...well minus 5 months. He had a heart attack on New Years 08-09 and that made him decline fast. So for 5 months he was in the hospital and a nursing home. I just posted on Joe's site about that decision. I didnt want to make it but I had to. If you did decide to have her home I would first see if she would qualify for a visiting nurse...either through medicare/medicaid or Hospice. When they live with you, you can get consummed by it. I learned the hard way and wish I had some relief once in a while. Also adult daycares are good too, here those are usually through Parks and Rec or County Human Services.