For anyone who is facing the shock of a diagnosis of early-onset Alzheimers disease (AD) -- I found these actions to be extremely helpful to combat the overwhelming pain and grief of the diagnosis of any deadly disease or condition:
1. I threw myself into research about dementia, not just AD, as for 4 years my husband Mike's diagnosis was "Dementia of an unknown type." Last May 2011, his Mayo doctors changed the diagnosis to "70% AD, 30% fronto-temporal dementia."
By looking at the many different dementias, it made it easier for me to understand some of his behaviors, as the dementia diagnosis so often is dependent on the parts of the brain that appear affected. Limiting my research to only AD would have made some of Mike's actions more upsetting and confusing.
Combined with this, I follow news about memory loss as well as AD. If a new treatment seems promising and logical, I check with his neurologist and with Mike and then try it if both agree. I don't know if any of these vitamins, minerals, foods, and/or exercise programs have really helped, but he became ill at age 48, 5 years ago, and is still able to stay at home by himself while I'm at work and his doctors are impressed with his abilities.
The research and active involvement in his treatment gives me a purpose and a feeling, true or not, that I am helping -- and not helpless.
2. It took me three years before I finally sought counseling. I only saw her -- a wonderful person who was trained in grief counseling -- for a few months, but she helped me to work through the anger and grief of losing my husband of 30 years as well as my life and our hopes and dreams. It was also very helpful to vent my frustrations and learn to cope with my guilt over getting frustrated with Mike.
3. This suggestion is one I advise, but have never followed. NOW, while the disease is in its earlier stages, create a support group around you. Friends, family, church, etc. I have seen others in the same type of situation find an enormous amount of help -- spiritual, emotional, and physical -- through their church. I have seen friends and family members leave us as they are uncomfortable with Mike's illness. But finding the right church (synagogue, prayer group, etc.) can be one of the most important things you do right now as part of your planning for the future. The "brand" of faith may not be as important as finding a group that actively provides help and support for their members in need.
Keep looking for help and answers -- I had heard the same advice I've included over and over again and ignored it, but there will come a time when some suggestion will resonate with you and provide solace or help when you most need it.
Best wishes to you and your husband --