FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!
PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.
Tuesday, February 25, 2014
As Gregory's Alzheimer's progressed I spent a lot of energy not worrying about the future, trying to not worry about the future, trying to not worry about not being able to not worry about the future, and of course ... worrying about the future.
I did a pretty good job of not worrying and living in the here and now but boy, in looking back, it was really worthless and a waste of energy worrying about the future because now that the future is the present, it isn't at all like I imagined it would be and in some ways not as bad!
First of all living in one's imagination is always worse than living in reality, no matter how bad reality may be. The imagination fires the unknown, the extremes, and at times the creative vs the real pain and suffering that might be (might have been or is.)
Gregory declined so rapidly during the month of December and January that the future was on us before I knew it. His anger and violence - here. His incontinence - here. His not sleeping at night - here. His not knowing who I am - here. His not being able to eat by himself - here. His not being able to dress or undress himself - here.
Almost overnight all the difficult signs of Alzheimer's that I had been trying not to worry about were here - worrying or not. The small amount of worrying that I did, didn't help, the future was here anyway. Prepare for the future? Yes. Ask questions about the future? Yes. Learn about what the future might bring? Yes, as long as it doesn't depress you too much. But worry - WASTE OF ENERGY.
It will get a lot worse too, but I am not worrying about that because Gregory is being well taken care of at The Lieberman Center. Will it be difficult for me to watch him get worse and worse? Of course. Will I cry when I think of how much I miss what he used to be and what we used to be together? Of course. But worry? No more.
Because I was able to take care of myself, be alert, educate myself, avoid too much worry, avoid too much depression, etc I have been able, proactively, to provide a situation for Gregory in which he will receive the best possible care for the rest of his life.
It feels good to have no worries. For sure I know they will not help. But I can continue to love this man and provide for him as needed, and visit almost every day as long as it makes a difference to him (and to me.)
When I got the call that he had fallen on his knees on the first night at Lieberman I didn't worry. When I got the call that he had fallen out of bed, cut a two inch gash in his head and given himself a shiner, and was on his way to the emergency room; I didn't worry. A week later, when I got the call that he was again on his way to ER, this time having suffered a Grand Mal Seizure, I didn't worry.
I regrouped, got dressed and met him at the ER, held his hand and cooed "I know" over and over. Loved him even more. Felt bad that he was hurting. Wished that I could make it all go away ... but guess what ... I was OK and I didn't worry about the moment (he was being well taken care of,) I didn't worry about the future (I accept that it will continue to get worse,) and I didnt' worry about how I would take care of him (I now had a team of dozens and dozens of people helping me make the best possible decisions for Gregory.)
I only had to be strong for him and myself, make sure that the hospital staff clearly understood that Gregory and I are not afraid of death, had discussed that, and wanted NO heroics, NO chest pounding, etc. I always ended by making sure they knew, "If he is dying, hold his hand ... NOTHING MORE."
In the end, what is there to worry about? When you have seen death approach and leave with your parents, with your friends, as it slowly but surely takes away the person you most love in the world, and when you accept that eventually death will come to get you ... fear looses its edge. Nothing to worry about. Be happy!