Last night I had just a flash of how sad and lonely I really am. I was able to swallow it as I fell asleep knowing today I would feel better and I do. We had been watching "The Secret Life of Bees" (DVD) which is quite a powerful movie dealing with childhood, parents, trauma, racial tensions in the 60's, life, love, and death. Apparently the movie affected Gregory quite a bit but it didn't show until he had a "meltdown" when asked, "Why didn't you take my water?" It is his job to fill the water glasses we use in the TV room and put them by our side tables for bedtime. He had refilled his but left mine behind. It was just a question. He got all upset, flustered, couldn't express himself and for some reason blamed me and waved me away.
I took it personally when it was really the big "A" speaking. None-the-less I took it personally. I finished closing up the house and sat, for a while, in the dark living room. I felt myself shutdown as I realized that in spite of our wonderful family, friends, and acquaintances; I feel so alone. Alone as in the end, when you die, you must do it alone. The best I could do was feel numb.
More and more, my conversations, mundane or intellectual, are with myself. Most of the time I keep my observational comments to myself because Gregory will not understand, will have missed the item my observation was based on, will reply in relation to what he was thinking not what I was observing, or I will have to repeat because he wasn't focused and ready to listen. Again ... and again.
I continue to take the risk of having conversations and asking him questions. I still ask him for help, to do something for me. Very often it backfires and I have to explain again, remind when he forgets to follow through, correct his misunderstanding, give step by step directions, or take over myself.
Very often after my reminding or correcting he will reply, "I knew that." When I try step by step directions, he is aware enough that he waits for the rest of the information but when given, gets confused and cannot follow more than one step at a time. When I have to take over, no matter how nicely I do it, it is awkward for both of us.
The alternative is to ask, say, and expect nothing and I cannot believe that is good for Gregory's self confidence. But I have to remind myself that if I believe this is good for him and continue to hold expectations, no matter how minimal, I must also be ready for and risk his meltdown and/or my shutdown.
I think that I have created a fantasy world in which I feel like I am in a relationship that resembles normal. Every now and then the vail parts and I get a glimpse of reality. It looks much like Hell. I hate to be so hard but I think I might be right about this, dear.
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.
Saturday, December 18, 2010
Just a Flash
Labels:
Abilities,
Alzheimer's Disease,
Change,
Choice,
Cognitive Skills,
Communication,
Confusion,
Difficulties,
Dignity,
Expectations,
Grief,
Language,
Loss,
Sadness
Subscribe to:
Post Comments (Atom)
I wish there were some magic dust or complex incantation I might use to ease all this pain and sadness. It hurts me to hear you hurting. (I know, I know....it's not all the time.) I love you. I love Greg.
ReplyDeleteFairy dust? The pain is part of being alive, hopefully one can keep it under control and experience joy as well.
ReplyDeleteLord, make me an instrument of your peace.
ReplyDeleteWhere there is hatred, let me sow love.
Where there is injury, pardon.
Where there is doubt, faith.
Where there is despair, hope.
Where there is darkness, light.
Where there is sadness, joy.
O Divine Master,
Grant that I may not so much seek to be consoled, as to console;
To be understood, as to understand;
To be loved, as to love.
For it is in giving that we receive.
It is in pardoning that we are pardoned,
and it is in dying that we are born to Eternal Life.
The Lord's Prayer. How could I have forgotten.
ReplyDelete