We are in the 'in-between' stage now. I see some normalcy and I really expect us to be like we were but then I get thrown for a loop when the normal Elbert disappears and this stranger comes in the place of him. This is a difficult time. I wonder how many times I've said that very thing or at least thought it. How many times will I say it in the future?
Elbert's birthday, his 73rd, was on a Sunday in Feb. I drove into church as I do all the time now. Afterwards we went to the Nauticus Maritime Center. Elbert growled and grumbled. 'It's cold' he'd mutter so I offered to take him home. He didn't want to do that either so we stuck it out and he seemed to relax and enjoy himself. The USS Winsconsin was docked alongside as part of the museum so we went aboard. His feet just seems to fit that deck and he walked all over every inch, examining every port hole, every gun. He even took a turn at the wheel. He announced on our way home that he'd had a great birthday.
This disease is such an unknown to me, to the family. As things progress and get out of control more and more frequently I am slipping into depression. Every day brings a new episode of some sort. I try so hard to stay calm and I know he can not help how he is but it's hard to not lose my temper. And, sometimes I do. I guess I am entitled.I try to educate myself about what we are going through, what lies ahead. I read some of 'The 36 Hour Day' by Mace and Rabins.
Then I read 'Alzheimers Early Stages' by Dr. Kuhn. I think that book should be required reading for anyone caring for an Alzheimer's patient. It's that good. The book says I should be telling the doctor everything that is going on, so I tell him that Elbert was very withdrawn all winter. He increased the Reminyl that Elbert was already taking. Sometimes the doctor will give Elbert a mini-memory test when we go for a checkup. When asked who the president is, Elbert says' Oh, it's that fellow who's been in there a long time'. That is really no answer at all. When asked what year it is, he said 1993. It's 2003. At least he got the 3 right.Elbert's slipping backward in tiem, forgetting the present. How long will it be before he forgets me and our long time together. I feel very sad.
Just when I think things are going badly there comes a ray of light. The confusion in his brain loosens enough for us to have some normal days. Perhaps that's God's way of keeping us focused on the wonderful parts of our lives and not lose our way in the bad.
It was s customary evening in late June (2003). I am at the computer when Elbert walks up behind me and puts his hands on my shoulders. I tilt my head back and he says 'I just wanted you to know how much I appreicate you'. How sweet that he does, in all his fog, know that I am struggling to keep us going, that it is so hard for me. I treasure the moment over and over again.
I wanted to talk, about us and where we are at this uncture of time. For once he sits down with me. We have the finest conversation. He's aware of his 'forgetfulness' and the problems it causes. I asked him if he worried about his disease. He answered much as he had when we first found out. 'There's nothing that can be done' then he paused and as he continued I could hear a big hopeful question as he added 'Is there?'.
I asked him if he ever got depressed.
'I try not to. It is useless to get depressed about something you can't change, but I guess I do'.
The man I knew, happy always, forever comfortable with whatever fell his way was not thrust into a situation he could not control, find any happiness with. Yet, he had a calmness about him and I knew that he knew that God was taking care of him.
I crawled into bed that night with such a peace but that was the last 'heart to heart' talk that we ever had.
.........................TIP.......................
1. Educate yourself. Read everything you can both in print and online to know all you can about Alzheimers. It helps tremendously to know the facts and be prepared.
2. Treasure each precious 'normal' moment. They will get harder and harder to come by.
