Tuesday a rep from social services came to evaluate Mike so we can go "straight Medicaid". If it goes through, we will then be able to switch to Hospice, BUT because of the program Mike's on, he can only dis-enroll at the end of a month. Since today is the end of July, we will now have to wait until the end of August. I will be praying that Mike stays healthy, especially during that time, so he won't have to go to the hospital.
Last night I had a wonderful dinner out, courtesy of a fellow spouse of someone with EOAD. Through the organization LIAF (Long Island Alzheimer's Foundation) and the local JCC this gentlemen, Pat Moffit, has offered to take spouses of EOAD out once a month as a type of support group/night out treat. He wrote a book about his experience with his wife titled, Ice Cream in the Cupboard. With the profits from that book, he is doing wonderful things for the Alzheimer community. He is giving back to both the above organizations and he is footing the bills for our dinners. Our hope is that we make it a monthly commitment. Last night there were 11 of us and we ate at a wonderful Italian restaurant in Roslyn. The experiences we shared were all very similar. We talked about getting the diagnosis and what our lives have been like since then. Of course, I was the youngest and it still takes me off guard when I hear that collective gasp when I tell people Mike's age at diagnosis. Most other spouses were in the early 50's when diagnosed - still too young to be dealing with this disease. Some spouses were still at home, others had to be placed in nursing homes. Whatever the situation is, it's heartwrenching. If an outsider saw us though, they never would have known what we were dealing with on a personal level, what we were all going home to. We looked like a group of friends having a delightful night out, laughing and enjoying the moment.
The only way I was able to go out last night was because of Courtney and Brandon. Mary leaves at 7 and Mike gets into bed right after that. Courtney and Brandon (with a little help from my brother) got Mike into bed all by themselves. They assured me that they would be OK and made sure I went out, even though I realized that we wouldn't have Nathan with us to help. Of course I sang their praises all night. I am very blessed.
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