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 The book says I should be telling the doctor everything that is going on, so I tell him that Elbert was very withdrawn all winter.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.
6 comments:
I cannot even begin to understand what you are going through but do know what it is like to be home with three young children, sick or not, every day and their needs. You are often in my thoughts and prayers. I imagine just based on what little I have read and do know that life must sometimes be so hard for you. Thank you for sharing your experiences here. I am so glad that you have others to help you through this! God be with you always.
Thank you. I do find it rough going but it is also filled with blessings and we do laugh some at silly things that happen. That helps to keep us sane.
My sympathy goes out to you and Elbert. Alzheimer's is a devastating disease. Your posts about Albert and Alzheimer's are touching and informative. They also bring back memories of what my Mom and Dad went through before Mom passed away in 2000. Dad was in his early 80's and Mom in her late 70's when the deterioration from Alzheimer's began to be really noticeable. Dad was her primary care giver for a good while, but with further deterioration, it was clear he needed help and she resisted any mention of assisted living. Dad obtained daytime help 5 days a week with Mom's care and housework, which eased the burden on him. Later, this care became around the clock. Mom had brief moments of recognition even late in the progression of the disease. The Christmas before she died, I was steadying her as she walked from the table to the couch in the den, and asked, "Do you want to dance?" She got a twinkle in her eye and twisted her hips back and forth a few times. She would also point to Dad and say "that's my husband over there". Dad lived another 4 years after Mom died. He was still mentally sharp a few days before he died and said he just wanted to be with Mom. You already have great insight into this disease and its impact on both the patient and caregiver. I recognize that I am reading about the situation 5 years ago and today may be much different, but my only advice is to take care of you, find a little help and make some time for yourself.
And thanks for commenting on my post.
Thanks, Lepidoptera and Lew for the comments. It is a tough disease and it lasts so long. Hard to watch the one you love just disappear. I am hoping that eventually I will catch up to the current time. Been doing Alzheimers care a long time, blogging a short while.
Hi latane,I feel your sadness and confusion with the interminable onset of this disease.You must have a great faith to keep you focused for so long looking after Elbert.I like the way you are telling the story going back over time. I wonder has anyone else thought of keeping a diary in this way.I am sure your experiences will be of help to someone in the same position.
Peggy
This is so good, Mom! So very well-thought-out and with such important points. And all the emotions of each phase. Just wonderfully done.
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