New Year’s Eve

Mr Hsg is still full of cold and is clearly not up doing much.  Sitting reading, I suddenly realised it was New Year’s Eve, and that it is Monday!

I have so much to do…write to DVLA and inform them of my diagnosis, Professor L says that he will tell them that I am ok to drive still.  These are things that you don’t think of initially that could be affected.   Then, I have to phone the Occupational Health Assessor and let her know my diagnosis and explain that Prof L says he will sign me off to retire early.  It is all so alien, these procedures, what to do next, who to tell.  I have yet to tell my work colleagues, somehow I am finding this difficult.   I keep thinking about work and the emails, and conversations I had with my seniors/bosses about my memory problems and my fears of forgetting important things, and them totally ignoring me!   Let’s just say they have little skill in the ‘human’ resources and disabilities at work and the law.  Having been off work since early September, work is beginning to fade away for me now.  I miss some of my work colleagues, they are lovely people, I miss working with the young people, but others can do my job equally as well.  No one is indispensable in life. I believe all we can ever hope for in our life’s journey is to bring something good to others on the way.   As Maya Angelou said:

” I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you feel

I love how these are put together!   Touching tributes to our closest loved ones, on the Pier at Clevedon, near Bristol.

Spoke to my Dad

Today I spoke to my Dad.  I couldn’t bring myself to talk to him over Christmas, I didn’t want to talk about anything to do with losing my mind.

Today I told him I Alzheimer’s, he was shocked, and started talking about the sadness of caring for my mother who has vascular dementia, brought on by mini strokes.  I wanted to say – stop it I don’t want to hear how awful it is to care for someone with dementia. He said “she lays the table with the wrong knives and forks and that is sad, it is the little things that upset me”.

 It makes me feel so guilty that Mr Hsg will have to deal with things like this.  I don’t want him to be tired because it is hard work, I don’t want him to wish he had never married me.  The guilt I feel is heavy.

It is easy to say, that he married me because he loves me, he didn’t sign up to be a carer of someone who will lose their mind.

I keep waiting for someone to say, sorry we got it wrong…maybe I dreamt it and will wake up and it will be different.

I think I need this short, private, silent, time to rage and despair inside, whilst I quietly accept it on the outside.   Soon it will no longer be new news to me, and will be “as it is”.

So..moving on to that time…


Leading up to Christmas

Yesterday my daughter C came to stay on the boat.  She phoned me the night before and we booked the train.  Then in the morning she phoned to say she couldn’t pick the tickets up because she needed my bank card!…..I had tried to transfer the money to her using online banking doing it on my phone, it was a real hassle but the transfer couldn’t be done before the 24th!

So I booked a bus ticket and she received the ticket by eh!

We went round Lichfield and went to the Cathedral to see what time the Carol Service was. We got back to the boat, I was knackered, and in pain.   Fibromyalgia  strikes at any time and I was in real although we were going the carol service was at 6.30pm I could not get out of the chair.

Today, it has rained all day.  We have sat and chilled out, watched Christmas films on tv, Its a Wonderful Life, the horror Spiderhole – which was not good.  I have cooked 3 different dinners, 1. Vegetarian for C, 2. Lactose/potato free for me and 3. Anything goes for Mrs Hsgreen.

I sent Viv my sister an email, knowing that she hates emails and computers etc..telling her of my diagnosis  of Alzheimer’s.

I am thinking a lot today of what it means and how long I have before I am not me anymore.  I lie in bed at night and can’t’t want to believe it.  I want to die before I am a burden because my mind has gone.

I think about Professor L saying that we need to think about our wills and to organise power of attorney.   Bloody hell I thought, that is serious stuff…

My daughter C, took the information with seemingly acceptance as if it was an every day thing.   Your mother has Alzheimer’s, Oh really, Yes, Oh dear, not to worry then….Later she said she was trying to take it in.

My husband does not say a lot, but I am guessing he thinks more.  We have only been married 18 months and this is not what either of us had in mind.

I want to apologise to him, “I am so sorry, I did not know, I would not have put myself on you had I known”.   I want to tell him not to allow me to live if I need treatment and my Alzheimer’s is advanced.  Once ‘me’ has gone, I don’t want to live anymore.

Oh how to say these things.