Today’s post is more of an editorial. Hope you don’t mind. I need to get it off my chest.
Earlier this week, I attended the funeral of a gentleman who had been diagnosed with Younger Onset Alzheimer’s at age 52. He was 62 when he died unexpectedly last week. I knew he and his family well. He was smart, handsome, loving, funny and a great family man. I had heard their frustrations and challenges over the years. I watched as the disease progressed and the family’s stress increased. I advised as they considered tough decisions. I hurt as I watched their pain. The good news is that this man was spared the final indignities that often come with the end stages of Alzheimer’s. His family was also spared the tough decision of the move to long term care. A blessing, many said. But the ten years of decline, the ten years of stress, grief, losing him before they really lost him, was a tough ten years and has taken its toll.
Lately, information about a dementia village has been making the rounds of Facebook. I had read about this village before. This innovative spot is located in Finland, I believe. It is an enclosed “village” with apartments, and even shops where those with a dementia can live safely and in somewhat “normal” surroundings. The tall walls around them, with locked gates, keep them from the dangers of the outside world. Trained staff are on hand and actually live with the residents. It is an expensive yet innovative solution to “what to do” with the millions who have a dementia.
My first thought was ” We need more of these villages!” Then, somewhere in the deep, dark, recesses of my mind, the thought occurred to me…”leper colonies”. I know, that is BAD! Forgive me! But here is the thing – right now most of the efforts seem to be, “Let’s put them somewhere safe”. Yes, safe is good, it is necessary. and we want “where” we “put” them to be nice, lovely, safe, as normal as possible. But we are “putting them” elsewhere – away from the rest of us. Hidden from public view.
Also this week, actor Seth Rogan testified before the Senate Appropriations Subcommittee on Labor, Health, and Human Services. Seth spoke about his mother-in-law who has Younger Onset Alzheimer’s. Before I share a bit of what Seth said, let me share this. It is common for only a portion of the members of a committee to attend said committee meetings. In this case, there were two, yes TWO Senators present at Seth’s testimony. Two. Is this a statement about the interest and importance of the topic?
Anyway, with humor and frankness, Seth shared what his wife and he have seen and experienced as his mother-in-law has progressed in her disease. He said that their experience had caused ” me, a lazy, self-involved, man child…” to actually do something about this horrific disease. He pointed out what we have heard before, that of the top ten causes of death, Alzheimer’s is the ONLY one with no way to prevent, cure or effectively treat the disease. He spoke about the lack of hope and the shame associated with the disease. He shared that he and his wife want folks to know they are not alone as they face this challenge. (part of the reason for THIS blog and the website, http://www.sandwichcaring.com!) He stated, “People need more help.”
And then he got to the real point. He said , “We whisper Alzheimer’s because our government whispers. And while a whisper is better than silence, we should be yelling and screaming until we get the funding and the research needed. ”
Bottom line, we need to cure it. I can’t add to that. I can’t say it better. All I can do is yell and scream. Will you?