Wednesday, February 19, 2014


From highs to lows in a few hours of FTD

This ought to be short....but I have a lot on my mind. Too much.
I have been busy doing the right things today. I so want to make sure that Bill gets the best treatment.....perhaps I should begin by looking at the way I sometimes treat him.
Anyway, I talked to another person from the FTD society today.
She thinks I should discuss things fully with the GP - and I will. Sorry, doctor, there is rather a lot on the agenda.
She also thinks I should push for a second opinion with maybe somebody better qualified than the doctor who we saw, who is a psychiatrist.
She asked what the official diagnosis is - the one in the letter from the consultant. There has been no letter to either us or the GP. I am told it will come - but probably hasn't been typed up yet.
She thinks I should push to have Bill seen by a neurologist in London....and push I will.
This afternoon I went to a meeting of a carers' group. It was interesting and informative - so much information to learn about and doors to break down to get things done
By chance I sat next to somebody I vaguely knew and we do share mutual friends. These friends have suggested I talk to to my companion at the group.
I also talked to her AD husband. He was diagnosed at least 4 years ago......we had quite a chat - a proper conversation. He even claimed to remember my father!
I don't care if he made that bit up; it just helped conversation to flow a bit.
I have no conversation with Bill and he doesn't know how to help himself to chat with people.
I shall insist that next month Bill comes with me and he can spend time with the other people affected by dementia and see how he makes out without me. They have their own group meeting in the next room.
So I came home feeling informed, but frustrated.
Why is it so difficult to be with Bill and so easy to be with Jim?
I know- 2 different dementias. each progressing at their own pace.
I arrived home to- well, you know! A powerful performance of what Bill does best. Noise.
It was a relief when the time came for another appointment. I had my Vitamin B12 injection this evening at gone 8 o'clock, It was only a month late!
I asked the receptionist if the lovely Irish woman doctor was on holiday, I don't see her name on the list of doctors with appointments available I so wanted her to help sort out all the medical muddles I feel I am bogged down in. That is not to be - she will retire at the end of next week. She deserves it for sure.
We now have an appointment with the new GP - the one who arranged for Bill to be seen about his hernia. He is younger and maybe hoping to make a name for himself - I hope he is up for a challenge!
I felt restless whilst I was out - I could hear myself muttering away.
I came home and completely lost it - anger spilled out of me. I banged furniture in rage!
Then felt so sorry and so guilty.
If Bill's legs stopped working I wouldn't ask him to get up and dance. But a brain not working is different - my husband, my friend, is not there. And I can't demand that my lifetime companion come back to me.