Being I have never known (personally) a person with Alzheimer’s, this is an eye opener.
I thank each of you who comment -
If you should come for dinner (I hope:), he probably could fake his way through the night. As long as there is nothing “to do”, he can basically make it. May get a bit quiet or he could be the life of the dinner, telling stories past and generally being very humorous. We love it when he clutches his tummy laughing so hard at something.
The problem comes in when a “to do” or “go get” comes up. It’s pretty wild to look at a vibrant, otherwise healthy 66 year old man, who can’t find our bedroom without prompt. Dr. C explained it and I forget (!) but if you tell him to make the bed, he can’t. If he does it from past experience, he does a fair job.
Found a sheaf of computer printouts from notes he made to staff. Years ago, he researched, then set up his company on computer. I read thru them and kept them “just because”. Now he doesn’t touch his computer but I bought him a new c. desk when I bought mine in 2003.
So new desk and computer sit silently by mine – maybe I was waiting for a miracle. Maybe that’s why I bought a laptop this year – it is kind of difficult to see his sitting there. I rarely go to the room now.
Most people we interact with do not believe the extent of the problem. It’s kind of like, “Well, sometimes I do —–too.” Dr. C said you certainly don’t need to convince.
Most people comment, “He seems OK to me.” I find that so offensive. If a person had cancer, early stage diagnosis, would they doubt and say he/she looks OK? Hopefully not.
I’ve decided to get tough in my response to their’s. When I hear that, I will invite them to spend a day with us. Actually, only one of W’s siblings supports or acknowledges a disease. It’s so serious a denial or whatever, that I won’t let the others take him out shopping. Last time out, he was left to sit on a chair at the mall while they phoned me. I asked to say hi to him and she said, “Oh, he’s too far away to call.” So I had her find him and call me back – he could just as easily been gone – in the winter.
Sadly his mother says, “It’s old age.” Personally, I didn’t feel 58 was old age but perhaps she know better than Dr. C.
This post may seem as if I am angry – I’m not. I just have never put in writing or told people many of these points.
Must thank you for reading and understanding. It’s been great meeting new friends and the support is real.
6 Comments
Boy, I don’t think anyone fully gets it unless they’ve walked in your shoes. My aunt has A. and her son, a doctor, denied it forever. He saw all the signs and just chose not to believe the reality. So, who knows where everyone is coming from, and we don’t have a clue often what is insensitive and what is kind. What do you need to hear from people? What are the right things to say that make you feel better? Not that others could take it all away, though we wished we could, what would be helpful? This could be a great place to educate others like sensitivity training or something. Lots of hugs and love, annie
Would you mind taking a few moments to think back and write about some of your favorite family traditions and memories with the boys that you and W. did? I would love to read about them, and am hosting a meme called “it’s a family tradition” Come over and and see a few of my own and consider sharing some of your favorites. Here’s the link: http://annieseyes.blogspot.com/2007/10/its-family-tradition.html Love, annie
In my mother’s family and generation, every single sibling, except for the youngest (so far) has developed Alzheimer’s. Looking back, I can see that Mom started showing the first (mild) signs in her early 70s. We didn’t know anything about Alzheimer’s then, since she was the oldest sibling, so didn’t know what it meant when she had to tape memory joggers to her computer screen in order to continue with the work she had been doing for some time.
She had been the only female, only over-30 member of a local computer club just a few years before, easily keeping up with the teen-age geeks. Suddenly she couldn’t remember what F1 was for.
Now, having done some reading on the topic, I realize that I and my brothers have a high risk of developing Alzheimer’s, as well. And I’m 65. So I have made some simple preparations, deciding which of my kids will have access to my bank accounts, make final decisions about my living arrangements, etc., when (if) the time comes. Something in order to avoid the mistakes that were made with Mom and my aunt. Insurance, as it were.
Whenever I mention this to certain of my family members, they immediately pooh-pooh it; “That’s too pessimistic; you’ll be fine; you’re smart.” As if Mom wasn’t.
“… he probably could fake his way through the night. As long as there is nothing “to do”, he can basically make it.”
And that’s what people see. They don’t notice that he doesn’t know where the towel rod is.
We can’t understand unless we live it and love the person that suffers.
I’m sorry that so many don’t understand.
Wow, 58. That is so young. My heart aches for you and for W. My mother didn’t have Alzheimer’s, but when she was losing it toward the end of her life, I surely didn’t want to see it.
People look at photos of Ella, and they say, “She looks so healthy.” And she has had pretty good health this first year, even though that comes with doing chest percussions twice a day and enzymes every time that she eats. Who knows what it will be like when she is ill. The daily routine takes its toll.
Sorry, I didn’t mean to hijack your post.
58 is unbelievably young! As for the family and others…it’s sad and frustrating, but like the old saying goes “you can’t truly care until you’ve been there”. I was stunned at the mall incident! He sounded so good on the phone when we spoke — I wish I could have known both of you way back when…but I sure am glad that I know you now! It is good to share things here with us — we believe you, and we care. Hugs!
Annie – you wondered what one needs to hear- nothing – just your comments as usual. I just find it diff. when they say he “looks OK”!You folks on my blog respond so much more positively that many of his fam and friends.maybe it is denial.
Wanderin Weeta – you’re so wise. Pooh-pooh is dangerous.
Laura – Bloggers understand – thanks:)
Beverly – your comments about Ella are a perfect example. No one knows all the hard work behind the scenes (percussions) – same idea – appears healthy. She is beautiful!
Trish-
thanks – he was totally comfortable!