Christmas on the boat 2012

Christmas Day – 25th December 2012

Didn’t get dressed on Christmas Day.  It was lovely having my daughter C with us..even if she just spent most of her time on her phone/twitter or kindle reading!!

I spent most of the day cooking and washing up, just a normal Christmas really.   I feel a need to try and enjoy every moment but in a quiet way.   I love being away from everyone and the hustle  and bustle of towns and cars.  I love the quietness of being on a boat, listening to the rain on the metal roof, feeling the boat bob up and down when the wind is strong.  Hearing the birds, the ducks arguing.  The canada geese with their damaged ‘angel wings’, forever stuck in marina, starting to exert their dominance.

I really wasn’t interested in presents, for me it was having my daughter with me.  The run up to Christmas was fairly traumatic with hospital appointments and the fear of the diagnosis to come.  I did not trawl round the shops for little gifts, finding those special little gifts that Mum’s find for their children.  I fear C was a little disappointed, but got what she asked for and even though knitting needles and a bag is not the most exciting it is a lasting present..and of course I will pay for some wool to start her off.

26th December 2012

 – Boxing day

We got dressed….and headed off into the rain to Bakewell in the Derbyshire Peaks.   C’s feet froze and we walked round looking for some thermal socks for her.  There were a lot of people despite the weather.  We sat in a coffee shop and I took pictures of C..I had told her I wanted to start a ‘Memory Book’ before I could no longer remember who anyone was.  I know it was a hard thing to say because it brings home the reality of what is wrong with me for her.   I lie in bed at night and it breaks my heart that time is limited for me being ‘with’ the ones I love.

Am I noticing my memory and other difficulties more because I know it will get worse?  My hearing is not quite right now.  I am unable to process more than one sound at a time.  Don’t bother speaking to me when I am listening to the radio, tv, or music because I can’t get what you are saying.

27th December 2012

We had to get up before the crack of dawn to take C to Birmingham Coach Station because she did not book her return ticket early enough for anywhere closer!!

I miss her when I am not near her.  Living in the city her life is fast paced, friends, a good social life, and life full of interest.  It feels sometimes we are worlds apart, but she has always liked the culture of London Life rather than the quiet country life I prefer.

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 text..technology 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 pain..so 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 believe..no..don’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.

Christmas eve..reflecting on my diagnosis

Well, I have had two scans of my head.  One revealed that my frontal lobe is smaller than it should be..the second that my brain shows abnormalities…….diagnosis…..Alzheimer’s.

The worst diagnosis ever..the very thing I feared.  I was hoping for just attention deficit..nothing more.

SHIT….

Turns out every time my mother hit my head (most days) it damaged my brain.  She has vascular dementia and is away with the fairies now.  No point in being angry of what she did to me, and my life that I could have had.   Time to just live each day as if its my last, live each day and hope I remember it.

Happy Christmas!

What did I learn last week?

On Friday, I had an appointment with Jill the life coach.  Work thinks it may get us all more productive to have sessions with a life coach.  She is good and it has been very useful.  For instance the first time we met I established that what I would like to work towards is to finish work in light of my poor memory.  This time I actually worked out more about how my memory loss is affecting me and my work.  When I talk I come across as very eloquent in my speech and it is hard for anyone to see at that moment in time that I may not remember the conversation.

When Jill asked me where I was at right now, I talked about seeing Elaine in Swadlincote for my feet, Dr Dulke in Leicester for my ‘head’ (he is the psychologist) and I have an appointment for my pains in Derby.  I said I felt if I was all over the place, which echoed where my appointments are.  I need to draw it all together to begin to feel whole/in control/have some direction where my life is going.

What she asked, could I do to that?   Make that phone call to find out where the report is, the next appointment from the memory clinic and from the psychologist.

So what have I forgotten this week?

Every day I forget to phone my Dad, I mean to do it but forget.  By the time the I remember it is too late in the day.  I do that a lot, I know I have to do something but can’t remember to do it.   Everyone says, ‘I do that’, and yes they may do, but not day after day.

Lets see what next week brings.

Hello world!

Here I am, 59 and have a problem with my memory.  I have trouble remembering things.  I have been thinking about what this means, right now, today and for tomorrow.  What are the implications of forgetting conversations you had a day, or an hour ago.

We create our memories as we live day to day, lovely memories of our husbands, wives, children, friends and pets.  But, what if we forget things on a daily basis and remain aware that we are doing just that without the knowledge of what we are forgetting?    I don’t know why or what is happening and may feel less uneasy when I have more information.

Right now I will record some memories through writing and photographs for myself and my family.