Alzheimer's Disease Support Group

My wife and best friend was diagnosed with Early onset Alzheimer's 3 months ago. For the past 3 years I had suspected that she may have it. She hasnt driven for 2 years, her own choice but now enforced.

It is so sad to see the things she was so capable of disapear one by one and to see the loss and anger in her lovelly eyes. She is only 57 and we had planned so much.

For me I feal loss of my best friend, wife and lover, of working, and of financial security. At times I feel angry at what life has dealt us. I feel sad when she says we'll get through this, when I know the eventual outcome and the rocky road to get there. I read your stories and feel humbled and hope that I am upto the task ahead.

Hello and welcome to our group. I love the name that you have chosen for here, "rememberme." These were words that I would so often say to my husband as I cared for him day in and day out. I'm so sorry to hear that your wife has Alzheimer's and at such a young age. It is so hard to have a loved one be diagnosed with AD but even so much more the hurt when that loved one is your spouse as well as your best friend. I often said myself that AD was taking my husband away from me a little bit at a time, day by day and I too have felt the anger and the hurt because of the loss of what could have been. You have joined a group of people who understand and care. Feel free to talk to us, vent, cry, or whatever. We are here for you...........LYW

Rememberme, Yes, you are up to the job ahead because your love will carry you through. But you must take it one day at a time because this disease is full of surprises and it is a waste of time and energy trying to see ahead. We have all been through it and some of us have come out the other side and are surprised at how we did so. Love finds a way.

Tony

Thank you for your message it is comforting to know that their are people that understand and share their knowledge and love.

Hello RM. It's a sad moment for all of us when someone writes in and says their relative has developed Alzheimer's. At such an early age, it is doubly distressing. The most important thing I can say to you is, except in terms of setting up tentative plans, do not keep looking down the long road ahead of you. It is so important to experience every moment you have together now. Get up every day and seize the moments of that day so you have many memories to cherish in the future. We don't often think of it, but living in the moment is not something most humans do very well. When we do, it provides some of the most exquisite experiences in our lives. Any time you want to talk or ask questions, we are here for you. Welcome to our group. ANW

Things have been up and down, I work a couple of days a month, helps with the money and helps keep me sane. It is really hard tho as Dee struggles when I am not there. I organise some activities which she likes and goes to each week, twice a week. It is difficult for me to do anything though as she is so suspicious of what I might be doing.

She can still do many things, I keep a watchful eye to make sure she is safe. The short time she spends alone seems so long to her and distresses her. It makes me feel bad.

RM, it is indeed a frustrating time and the suspicions are particularly hard to take when you are doing your best. Just remember it is the disease and nothing personal. I am glad she can do some things for herself. That is a help. Try and keep the spirits up as that is essential if you are to keep going.

Tony

Hi RM. It's so important to keep some outside activity for yourself if for no other reason than it helps you cope longer and more adequately. Our first inclination as our patient needs more help is to curtail our own activities to help our patient more. That is a downhill slide, because we get so worn out we can hardly cope at all. Getting your wife some activities of her own certainly helps. Try to engage others to be with her so you can go out and have at least some of your own time for as long as possible. In the long run it is better for both of you, but you have to make that decision because her decision will invariably be that she wants you there with her now. It's hard for many of us to get back in that "because I know what is best" mode, especially with another adult, but with AD it is necessary.

The paranoia is a common component of AD. I think that in some way it springs from memory loss. Memory loss makes your wife unsure of herself, therefore she requires more help from you. At some level she knows that she is no longer independent and that she is not meeting some of your needs adequately. That makes her even more unsure. That leads to paranoia because she knows if she loses you, she will be alone and unable to cope. In other words the paranoia is a survival mechanism though it doesn't work very well. Don't let the paranoia keep you from other contacts with people though, because that too keeps you sane. What a juggling match! Keep talking to us RM. ANW

Hello rememberme. Thanks for the update. It is good that you have something that you can do to get away for a while ever now and again. It is very important to have some time away. I'm wondering if there might be someone you could get to sit with Dee when you are away, someone who could just keep her company? Another option might be if there is a daycare in your area for adults. Keep in touch as we care and this is a good place to vent,etc.

Blessings,

LYW

I went to my first Alzheimers carers support group today. I was so good to talk and hear of other peoples ways of dealing with things. Its such an up and down journey. My lovely wife was fearful of me going and even the day before was upset at the prospect. She thought that some other woman would wisk me away. Eventually I convinced her I needed to go so that it would help us both.

After we went to see our new born grandson and then joined a bird watching group in the evening. So the day went from despair to laughter.

Its been difficult this week as I was offered a very well paid job, unfortunately it would mean beening away for 12 hours a day some days, it would set us right financially but I have no other family member to help with the role of care giver so am unable to take the job. I feel so selfish that I wanted this job, my heart tells me one thing and my head is confused.

Post edited by: rememberme, at: 09/09/2010 06:00 AM