Welcome to our little family! I just saw your posts on another thread and thought, hmmmmmm, don't recognize THAT name!
If you feel comfortable telling us where you live, let us know on the "Where are you from" thread. It's been fun, seeing how many different places we all live.
I am so sorry your husband is in the later stages. Wish you had found us earlier. Please let us know if there's anything we can do to help.
Thanks! My husband was diagnosed 8 years ago, at age 60. When I first started looking for help, I was shocked at how little help there actually was. The website is a great resource, but I don't think it was even in existance then. I had to make my way through the system (if you could dignify it with that name) pretty much on my own. The worst part - I still have to work, so my husband spent much longer than he should have at home alone - I couldn't afford to pay for help, but I made to much money to qualify for aid. Catch-22!
The Alzheimer Spouse has just celebrated its first anniversary. Isn't it amazing what Joan has done, in such a short time?
It must have been so terribly hard, even trying to get a diagnosis, that long ago -- EOAD was practically unheard-of back then, wasn't it? And there would have been so little financial support, EOAD patients don't seem to "fit" into most Government categories.
Come to think of it, how DID you get a diagnosis? I visit another AD site from time to time, and see posts from people asking for help, sure that their LOs have AD but unable to find a doctor who will "commit" to what is really going on.
beenthere, welcome to our group! I'm so sorry for what you are going through now. All of us know it is coming, and don't want our loved ones to have to face it. Like you, I have to work and also make too much money for aid. I would appreciate your advice on when you did stop leaving him home alone. You said that you waited too long. May I ask what the event was that determined getting help either in-home or NH? My DH is doing okay at home so far, and I go home at lunch and fix lunch and eat with him. I'm playing it by ear right now.
We had a good doc at Kaiser who knew a lot about Alzheimer's - had done some research - the very first Alzheimer's patient recorded was 40, as I'm sure you know.
When I went to work, I'd leave food out and eventually he couldn't even feed himself with that. I would turn the gas to the kitchen range off underneath the stove. I had a phone with photo-buttons so he could call me at work and I'd dash home when he got himself in some kind of trouble. He was never a wanderer thank goodness!
It just got more and more tenuous. Luckily, my name came up on the waiting list for respite grant from Redwood Caregiver Resource Center here in Sonoma County of $300 a month for a year. At that time, some of my wonderful women friends sent out a letter to everyone we know and set up a "caregiving account" for us. Our wonderful friends and family donated about $800 a month all together and I used that to pay a friend to stay with him. For about seven months, I was able to care for him that way until he assulted his caregiver when she was trying to help him go to the toilet and he pooped all over the floor. They took him 911 to Kaiser, where they sedated him and kept him. I kept tellling the social worker at Kaiser - "I can't take him home!" She got Hospice involved and they found a place for him eventually.
It broke my heart, but as I said elsewhere, the gift is that I can love him again, now that I don't have to care for him.
Sorry I seem to have missed this thread... though a bit late I too would like to welcome you beenthere. You have been through a great deal and I am sure we can learn from your experiences. Keep posting, Nikki
I am blessed to have a very supportive community. That said, there are folks,quite a few, who disappeared from our lives entirely. I used to be so angry about this, but I kind of made my peace with it. Some people are just fearful - of AD, of their own feelings, of who knows. And it's their loss really.
The comment that just drove me insane was "I'd rather just remember him the way he was." (Well, isn't that nice for you! It's all about what YOU'D RATHER.) So many people said this to me - including family.
Oh, yeah. Went through that with my first husband's family, the insensitive, self-centered ... excuse me. Getting riled. :-)
Actually, when my father was dying, my sister wanted to bring her brood of kids for one last visit. Daddy didn't think he could handle the stress, and asked me to stop her. I told her not to come, that I thought she and her children would rather remember him as he was, and she accepted my advice. And I do think it was kinder to them. But, of course, that was MY decision, not hers! She'd have been here in a heartbeat if I'd told her he needed her, or that I did.