A story from The Idaho Statesmen. Cindy Jacklich, an Alzheimer’s sufferer, visited a number of businesses to raise money for the Alzheimer’s Association. She details the eventual realization that she was having problems and what it’s like to go out in public and deal with people who don’t understand the situation.
Had to take a blogging break. Between family reunions, work and vacations I’ve been a little drained.
My father has started going to a life enrichment center program for dementia sufferers. It was a battle because he’s still so aware and he’s humiliated. Despite the pretense of him being a volunteer to help the people in the program, I think that he still sometimes realizes that it’s really baby-sitting him. He has a lot of fun when he goes. It’s still hard though to know that we’ve reached that stage and that the next logical phase is more full time help.
Still, it at least takes some worry off of my mother.
It’s amazing what triggers tears now. Sometimes it’s obvious-I cry a lot when dementia and Alzheimer’s is discussed. For example, watching the season finale of This American Life, I sobbed. They profiled men named John Smith, all at different stages of their lives. The one that got to me was a man in his 30s. He had a young child, but at the same time was having to deal with his aging mother who was ill and had dementia. One scene had him in the hospital room with her, discussing her funeral. She told him that he didn’t have to speak if he didn’t want to; he could just pass a statement to the preacher. His voice sounded strained as he tried to express his love for her. It was hard to watch and set me off. I’ve often thought about my father’s funeral. As much as I don’t want him to die, I want this struggle he’s dealing with to be over. And I don’t think I can speak at his funeral. I choke up at the thought of him dying and his funeral even now.
Sometimes though, odd things set me off. Watching the Tony Awards open with the “Circle of Life” from The Lion King made me cry. I wasn’t sure if it was the place I am in life (trying to figure out my path and where i fit) or if it’s just the general tears that well up at odd times. It’s happened ever since Dad’s diagnosis. My therapist tells me that I’m grieving for my father and his changing condition. I’d like to know why the grief expresses itself with the Lion King though.
Great article from the AP about earlier diagnosis of Alzheimer’s allowing patients to become lobbyists for their cause. I encourage more people in the early stages to make their voices heard. There is a stigma attached with Alzheimer’s-the second that someone finds out you have it you’re treated, as they mention in the article, like you’re stupid. Even with my dad, I sometimes find myself talking to him as if he’s a child instead of a 62 year old man with a Ph.D. Most everyone in our family, if they do talk directly to him, talk to him this way.
I look forward to hearing more from these people as it’s the only way that we can better our understanding of what’s happening to them.
The hardest part of not feeling like a normal 25 year old is the feelings that arise when watching shows about “normal” young women. Today’s show was the What Not To Wear: Wedding Belles special. It’s hard to watch things about marriage for me. Not because I don’t want to get married; I do. But the dream that I had as a girl isn’t going to fit what the reality of life with Dad’s Alzheimer’s. I never wanted a traditional wedding–I don’t believe in “God”–but I always have wanted my father to walk me down the aisle. Frankly, I don’t think that’s going to be possible.
So marriage discussions often make me upset. I’m want to be married-I’m in love with my boyfriend and hope he’ll stay around. He passed the test of staying with my Dad by himself for hours. I’ve cried in front of him though I do hold a lot back. I’m working with a therapist on my many issues to try and improve our relationship. I think most problems we do have are related to my bouts of depression and inability to always share what’s happening in my head–big part of marriage. It’s easier to write my thoughts down than to actually say them aloud.
So even though I want to be married, rationally I know I should fix myself first. And I don’t want to pressure anyone into doing something before they’re ready, just because of my Dad.
I want to be normal. I want to not have to deal with this. I want to be able to be the carefree girls on the television. But it’s too late for that. I’m trying to remind myself that most things won’t happen the way you want. Isn’t that what being an adult is all about? Realizing that life isn’t perfect, life isn’t a fairy tale?
Alzheimer’s Association is doing a new fundraiser that looks really interesting. It’s called Quash. It’s a scavenger hunt being held during June in three cities: Philadelphia, San Diego and Indianapolis. It looks like a lot of fun and a great way to raise money. Only wish I lived in one of those cities. Hopefully they’ll expand their offerings.
An interesting article about caregiving and training. It stresses that despite the findings that a bit of training can ease caregiver stress, finding time for training is often a problem. Another problem is location-if you’re living away from where training is easy to reach, it’s that much harder to get what’s needed.
A caregiver to a woman diagnosed in her 40s is speaking out about their experience. There are a lot of cracks in the health care system, especially when it comes to this disease. It’s great to have so many younger people stepping forward and to have coverage of it.
The Washington Post featured a story on Chuck Johnson, who is one of the people that testified in Congress with Sandra Day O’Connor. He has familial early-onset Alzheimer’s. What i found remarkable about Mr. Johnson was the last paragraph of the story.
He once thought he would turn to suicide when the balance of his existence finally tipped. Now he is not so sure. In conclusion to his testimony this morning, he plans to tell the Senate committee that he wants to be “an Alzheimer’s survivor.” He thinks saying that can make a difference.
He also believes:
“I could be in too big a hurry to get to the end and miss grandkids or a medical breakthrough. . . . Right now, I have a good life, even with the bad days.”
I’m sure some of us who have dealt with the disease think about what would happen if we develop the disease ourselves. I’ve often said that if I am diagnosed with AD, I’ll kill myself when it starts getting bad. Mr. Johnson seems to have the more positive outlook and I think his experience is very valuable. It’s great that he’s being given a forum to share it.
StoryCorps is an great initiative that helps families and friends record their stories. The idea behind is to record a story. Sometimes it’s a revelation, sometimes it’s just reminiscing. They have a special initiative, the memory loss initiative. It’s specially created for those with dementia and they have a few examples on their website. It sounds like a great project, one I’d love to be a part of. But I think the idea of actually confronting this on tape is a little too much for me. At least for now. Probably by the time I’m ready, it’ll be too late.