Jacqui’s collection reveals many frustrations about post-diagnosis systems, education and support

Well, as you know I had a bad reaction to the Donepezil and its very tiring to have to go to my GP, then they said stop it all together. Then to the memory clinic, and they say “well, why don’t you go back to [inaudible]?”, and I said “no my GP says stop it all together”.
By now I am quite depressed, very irritable with all the chemical reactions going on in my body.
My GP knows that I have a high sensitivity to drugs, and he knows me better. Yet the memory clinic try to tell me to tell my Doctor, and he is saying “no”.
Why can’t everybody work together for my good?
I have a very good mental health specialist because I have, well the problems I can remember; I suffered with depression and anxiety. Then I phoned her up and she was able to calm me down, point me in the right direction, confirm to me that I was doing the right thing for me and not to let other people push me to do things that aren’t right for me.
But I wanted to go back and see her again, if I felt lost. But now I have to keep ringing and being referred back to her. I have to go and see the Doctor, and wait two weeks for an appointment. Then I have to go and get a referral back to her, which will take about a year to get to see her again.
I just don’t understand why everybody can’t just work together, talk to each other. Everybody has access to my notes, find out what works for me and not to tell me what they think should work for me. And everybody work together for my good.
I told you I would be going to a post diagnostic course at my local memory clinic, I was quite nervous to go, but my friends and I went last week. It was a basic introduction – saying your name, and the nurse telling you what your name means and asking you if you liked it. So that wasn’t too bad.
They did a bit of telling you what dementia was, but then, we know that – we’ve got it.
Anyway, I went back again this week. The lady that takes it, her presentation skills are not the finest. It was a bit difficult really. And then, they read the slides from the computer. They won’t give you a copy yet because you can only get a copy at the end of the meeting. So that hinders you from writing your own notes on the notes that they give you. It would be helpful if you could just write something as they speak on the notes, but no, they wont give it to you.
Anyway, then I was really upset because on the last slide – there was a picture of Arnold Schwarzenegger, with all his muscles and no shirt on. Well, not all of us appreciated that. And I definitely said I didn’t. The staff said “oh right, we better take it off” and I said “yes, you better”. I mean do they not realise that its the short term memory that goes, but the long term memory is there. And if you have been abused, then that will still be there – as if it is today. So looking at a naked man, can really start some, well, trigger some really unpleasant memories for some people, like myself. I wasn’t very happy. And I was disappointed because I thought they would know better than that.
So now I am in two minds, do I go to the course again? Because next week they will talk about nutrition. Well, I have done all of that many times before. But I am told it will be nutrition for dementia. Well, what is the difference? Anyway, we will see what happens and what I feel like doing next week.
Yesterday, my key worker came for a review, and I had been sending her quite a few emails about different things. So she came to discuss with me. One of the things that I said was; it is quite a big gap from going to the GP, being diagnosed and then you’re kind of just left for months and I would like to have been given a pack of information when I was diagnosed. So she said “that is very interesting, they don’t do that at the memory clinic but I will have to put one together”.
So I have been looking at ther Alzheimer’s publication catelogue and also I have an A4 box file with all my own sheets that I have got from the Alzheirmers association. So now my project is to put together an information pack and take it to the memory clinic, and say “this is what I would like to have been given when I was diagnosed”. So that is a project I am going to be working on.
I am responding to Agnes’ post about self management, it is in connection within the project that [inaudible] is doing. Agnes has asked if we would just contact dementia diaries and report on how the self management has been and do we understand it.
Well not really, I suppose for me self management was when I went to chronic fatigue services and I went on a six week course. We had different subjects and they shared with us things that we could do to manage the chronic fatigue. I suppose to me, that is what self management means.
In connection with dementia, it is really quite a grey area because you get diagnosed and then you do get medicaiton, and then youare left on your own to find out what information there is. You dont get an information pack or anything when you are diagnosed. So to answer the question “can I self manage, and if I do who helps me?” At the moment there is a in two minds course I am going on at the memory clinic, and I suppose after that you’ll be expected to self manage. And who supports you? I would suspect it is your key worker, or friends.
I just want to share with you out of the dancing with dementia book or something like that, on page 135, she says “if you become more emotional and less cognitive, it is the way you talk to us and not what you will say that we will remember, we know the feelings but don’t know the plot. Your smile, your laugh and your touch are just what we will connect with. Just love us as we are. We are still here, in emotion and in spirit. If only you could find us”. I think that’s ever so good. It connects for me to when I was having the side effects of the Donepezil , and I spoke to my mental health specialist and just hearing her voice I connected to her – with that I felt the warmth and acceptance and above all I felt her empathy for me.
I knew that feeling when I looked in to her eyes, and all my pain would go away and I knew she was there for me. And that is what its all about, knowing that you are there for us, not what you can tell us to do or how to live our lives but just how to connect and have empathy and be there for us.