Back in 2002/3 one of the hardest things for me to do every morning was to leave for work. Mike was still aware and able to get around. The kids would leave for school and I for work and it broke my heart that Mike was at home all day to "think". My dad visited every day to keep him company, but could never stay the whole day. My mom and Walter would come and go and we would do all we could to not leave him alone for that long.
I had gone to LIAF (Long Island Alzheimer's Foudation) and they told me about a day program at the JCC in East Hills. I decided to take Mike there to have a look. Needless to say I was taken back by the size and appearance of the facility. They not only have day programs for various adults and special needs children, but they have a huge gym and various after school activities for children. The place was light and airy and Mike and I both decided we'd try it.
I applied for and was approved for Mike to use public transportation on the mini-MTA buses. The JCC had a gentlemen who vounteered with them that lived near us, so he offered to come to our house in the morning and then go with Mike on the bus. After a few short sessions, Mike was becomming resistant to going and we had a really hard time getting him on the bus. That experience was not pleasant as I'm sure these drivers have ABSOLUTELY NO TRAINING in AD. The problem was that this day program was geared more toward the older adult - people 65 and older. They listened to Lawrence Welk and watched old movies. The TV was usually very loud as most participants were hard of hearing. Mike would become restless from the loud noises, so this was a problem. He also looked around and saw all older people and I'm sure he felt that he just did not fit in. The director of the program became "intrigued" my our unsual situation. She also knew that when they were audited, they could not let Mike's file be seen because the State would not give them money for anyone attending under the age of 65. Imagine that??!!!
This woman has made it her mission to develop a day program for people with any form of dementia aged 65 and YOUNGER. She has worked tirelessly in bringing her program "Let's Do Lunch" to a national level. Brandon had to do a report for a special project for school and he did it on her program. When I saw all the participants playing basketball, word games and listening to the Beatles, I became teary eyed. I so wished this program was around when Mike was first diagnosed. What has made me feel better is the fact that it was Mike who INSPIRED this program. It was through his unique problem that this idea came about, and with one AMAZING woman who never gave up.
JCC and AFA are having a conference in NYC on 4/11 to kick off national attention for the Let's Do Lunch program. I plan on being there in honor of Mike to celebrate how far they've come.
Thank you Connie for all your hard work. You are truly an angel.
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