no magic cure
Today I took Ray to the neurologist, he is the best known in our area and has been on Ray's case since the 1990 stroke so knows his history. We see him every six months as he hold a watching brief as do several other specialists. This way if Ray goes to hospital I can ask for them to be contacted about anything in their area of expertise. It is comforting to know that he will do that if asked.
As usual we had the preliminary questions, I always supply some initial information like when Ray had the last fall and list any changes I have noticed in Ray since the last visit. I try to word it all so Ray doeesn't feel embarrassed and so does the neuro, we don't talk about BMs etc, he just asks me have I increased my wash days or something similar. Ray seems oblivious to most of the conversation, instead he studies the posters on the walls.
Today I asked the specialist if he was doing any new drug trials, he said he was including being excited about a study that looks as if it could produce a medication of the future for prevention of some issues with dementia. I hadn't heard anything about this new medication but it is trial only so I guess if the trials are successful we will hear when? ten years down the track?. There is also talk of a vaccine to be used on close family members where families have histories of dementia. This will maybe prevent some family members who are at high risk from getting the disease. Wow, what a breakthrough that would be! But that too is in the early stages. The doctor added: "Sadly, nothing for Ray in the present trials."
After ten years post stroke and three years since the diagnosis of dementia I am still searching for that magic bullet, the one that will reverse the stroke damage and let the old Ray shine through once more. I don't think I am being selfish when I wish life was so different for us, I think I am just yearning for another go at the nomal life, the good life of retirement adventure we used to dream was ahead of us. Silly in one way as even if there was a "cure" found today, five or so years of safety trials etc would make it too late for Ray. But still I wish and dream and google all possibe breakthroughs, new med descriptions etc, hoping to find a chemical solution.
One piece of good news, on the advice of a friend I sent out an email to 20 or so people on my list asking them to write, or email or phone so Ray would have some contact with them. He is not good on the phone but he does love to get a call. The email said in part:
I am writing this because a friend asked me what I miss most and I said "contact with friends" and she suggested I just contact my friends and express a need, for an email, a phone call, whatever seems appropriate. So this is it, my call for support. So just email, phone or visit, whatever it is you usually do.
Because of the dementia plus his other physical problems Ray doesn't have the ability to process thought the way he used to. For instance he tells our 9 year old grandson Christopher the same story over and over about how he used to live behind Spencer school and if he missed a days school the teacher would come up at lunchtime to find out if he was sick. It is always the same story and I know Christopher must get tired of listening to it but he never says more than: "Yes Pa." at the end of the story. Ray does enjoy the phone call and speaking to his grandson Christopher, he enjoys it very much.
If you speak to Ray on the phone he will ask how you are, how the family is, how your wife is - whether you have one or not. He will listen if you tell him a story and usually make the right comments, then he will say: "I'll hand you over to Sue now." I am just so pleased when people ring him. It keeps him in the loop - and we all need that."
Well, we got three phone calls tonight. I talked to the callers, Ray talked to them, Ray even managed ten minutes on one of the calls. Our son Trevor said: "Looks like you got a month's worth of calls in one night Dad." and Ray laughed and said: "Yes, it does." that is the first time I have seen him laugh in genuine pleasure for some time.
I guess my point is that it actually doesn't take a lot to make life worthwile, a phone call will do it. So maybe we need to reach out to others more often, particularly friends whose circumstances, like ours, are less than they would have hoped for.
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