Anyone out there caregiving for a spouse with early onset Alzheimer's?

I've thought about you off and on all day, wendala128. I wish I could drive over and give you a real hug, but the best I can do is this virtual one.

My husband was 78 when he was diagnosed, so I do not have experience with early-onset. In addition to dealing with dementia you have the heartbreak of unexpected end of work life and the end to many of your life dream's. I am so, so sorry that you and your husband are experiencing this! Hugs to you both!

In the course of my caregiving I met a man who had early onset Lewy Body Dementia (which is what my husband had) and his wife, and saw some of the challenges they went through.

Based on my experiences as the well spouse and on observations of that younger couple I can offer some suggestions:

1) Learn as much as you can about your husband's disease. The young wife could not believe that her husband wasn't faking some things just for attention, etc. She would have been much less stressed (I think) if she had known better what to expect. I know that helped me enormously.

2) Seek out and apply for all the financial and other help you might possibly be eligible for. Once your husband is on disability (which I hope goes smoothly) he will be eligible for Medicaid. In some states that is automatic and in others you have to apply for it separately. Find out and do what you have to do to get it. I found it very helpful to talk to the needs assessment worker from our county Social Services. She knew about not only county programs but all kinds of other resources. She put me in touch with a volunteer respite program, for example. This process is full of red tape and frustration. If there are parts of it you can delegate, do it! Or get other help to free you up to work on the endless paperwork. If some kind soul asks "Is there anything I can do to help," say "could you bring over a simple dinner tomorrow? I'm so busy with applying for various programs I can't spend time in the kitchen." Or "Could you come over and watch movies with Hubby, so I can get some paperwork done." The paper work does eventually decrease, but the first year is tough.

3) Don't isolate yourself. (This one is hard!) Find a support group for caregivers, and even better find one for caregivers of early-onset dementia if you can. Also continue to do at least some activities you did before the diagnosis. For me that was a book discussion group. I could read the books at home and then have someone stay with my husband for the meetings. Don't totally give up your own activities. There has to be one sane adult in your household!

4) Accept that some behaviors are not within the control of a person with dementia. My mantra became "This is not Hubby speaking. This is the disease." Do not tolerate abuse, but try not to be judgmental about things he can't help.

5) Life isn't over for you. Your marriage isn't over. But it has sure taken a whole new path. Do whatever activities you can together, as long as you can do them. And you may be surprised at how well your husband retains old memories. My mother can still play a mean game of cribbage, even though she can't remember that she ate breakfast an hour ago. Short term memory leaves before long term. Take advantage of the long term memory! Continue to see friends, but now it might work better to have them over instead of meeting in a crowded noisy restaurant. Continue to go to ballgames or concerts or whatever you enjoy doing together. (I learned to always get aisle seats, in case of a need to depart suddenly.) Eventually you'll be able to do less and less, so take advantage of all the opportunities you can, in the early stages.

6) Enhance and extend the pleasure of activities by taking pictures. Even a simple picnic or drive to see fall leaves can be enjoyed multiple times if you look at pictures of it together.

7) Be gentle with yourself. You will not be a perfect caregiver, 'cause that ain't possible. Do you best. When you have a bad day come here and vent. Then wipe the slate clean and start over tomorrow.

8.) Keep all three of your daughters informed of what is going on. Don't try to protect them. They can cope better if they have the truth.

I really, really wish that no spouse had to deal with their loved one developing dementia at any age, but especially young. I am sorry that you are in this situation. I won't kid you that it isn't hell some days, but there are some special rewards, too.

Hang in there!

One other thing ... I think it is a huge mistake to promise someone with dementia that "I will never put you in a nursing home." There are just too many variables totally out of our control. In some cases it will be necessary to use a professional setting to get the best care. Don't limit your options.

I told my husband frequently, "I will do everything I can to keep you living at home with me as long as I can. I always will want the best care for you. If it happens that you have to live someplace special to get the best care, I promise that I will never abandon you. I will be with you often. I will advocate for you. I will see that you get the best care possible." When he was in a good frame of mind and pretty "with it," we sometimes talked about this promise more specifically.

Promise you'll never abandon your husband. But don't make promises about exactly how you'll provide the best care possible for him.

(As it turned out, my husband was able to stay at home until the end, dying in his own bedroom holding my hand. But I didn't promise that, because it really wasn't within my power to control.)