I had a call from the Research Nurse regarding the Brain for Dementia Study that I expressed an interest in. It is to do with the progression of the disease, with a yearly 2 hour meeting with testing on my cognitive abilities, and donation of my brain and spinal cord on death. She will send me the details about the study and will pass my name on to the Research Group at Manchester which is the area that I come under now.
This is good news because I finally feel like I am taking some control over my choices regardless of whether I will remember that I am in this study; it is me who has asked for this.
The past couple of days I wish I could retreat into a shell. Withdraw right up inside and hide away from the outside world. I dreamt that I was feeling depressed, and have wondered if I dreamt it or have I thought about it.. I do get confused with my thoughts sometimes, thoughts, feelings, ideas, reality, they seem to run into each other in a swirl.
I do a lot of my thinking when I wake up early. I lay in bed and go over my past seeing if I can make out any clues to the beginning to my brain cells dying.
Professor L asked me if I had been dropped on my head as a baby. It is a strange question seeing as it is not something that anyone would know without some investigation within their family. “I was hit round the head regularly” I replied…he then explained that it is probable that it damaged my brain leading to an under-developed frontal lobe.
I remember one time sitting half way up the stairs, that’s how far I escaped from my mothers hand. I remember the pain in my head, I think she had a shoe or a wooden brush or something that she was hitting me with. That must have one of those times that was damaging…. I used to dread coming home from school knowing that she would be angry and give me a (rather heavy handed) ‘clip’ round the ear. I was not allowed to run away, I had to stand and be hit. Then she would throw the accusation of “Now look what you have done, you have hurt my hand”. Somehow I thought that most kids were hit, although I realised that I had it worse than some. During the summer holidays I spent from early morning till tea time outside, rain or shine. When there were no friends about to play with I would go down the bottom of our 40′ garden and crawl into the middle of the raspberry patch with a book. I was hidden and safe. Other times I would stay in the bedroom and read, thus began a life long love of books. I would escape inside my head into the world of words. My favourite book, which I still have today is ‘Old Peters Russian Tales’ by Arthur Ransome. I read the stories over and over and over. The Silver Saucer and the Transparent Apple, Frost, The Hut in the Forest, Baba Yaga..Sadko…. I wanted to go to Russia, I wanted to see the lands, the forests, the beautiful buildings. I liked that Grandfather loved his ‘little pigeons’, I wanted to feel that warmth.
I was intelligent but unable to learn things at school. I simply couldn’t concentrate or remember anything. I grew up with a passion for science, but I ended up knowing a little of everything but as they say, Jack of all trades but Master of None. I have struggled to retain anything in my life.
There were signs that all was not right with my brain as a child I think. I had a craving for vinegar when I was little, when laying the table I would drink it out of the bottle. Then my mother caught me and told me that it would dry my blood which scared me and I stopped. My sister even now will laugh at that fact I constantly wet myself when I was young. I never felt hungry and spent hours at the table crying, my mother shouting that I could not leave until I ate something. She told me that when I was a baby they took me to doctors because I would never eat, all I would do was cry, but they did not know why. I always wondered why she disliked me so much, and after I left home at 19 I spent 4 years in counselling coming to terms with the psychological damage she did me. Now, once she developed dementia she stopped being awful to me..she simply forgot she didn’t like me!!
I have realised over time that my brain works slightly different from others, for instance, I often have music playing in my head, I wake up with a song as if I were listening to it. Some of the songs seem to come from nowhere and wonder why a particular song is ‘playing’. There are some songs/music that I am unable to listen to…it makes me feel angry, want to scream and hold my hands tight over my ears to block it out. Jazz does that to me. It upsets the harmony in my brain, it feels sharp and spikey. However there is some music which feels..right, gives my brain some peace, or lifts my mood, gives me a feeling of lightness and excitement. I heard K’naan on the facebook page of Pip Wilson (check out his website)..who I have met several times and who is truly devoted to working with the youth, and who believes that everyone is a Beautiful human Person. This song Just Take a Minute’ just feels right inside my head. It creeps through the chaos of my thoughts and calmed and lifts at the same time.
I have always hated filling in forms, I get ‘bored’ after the first page. I fail to read the instructions, and then cannot remember them when I do. I get tied up in the semantics so that I don’t understand what exactly it is asking me to do.
I have to fill in a form to make an appeal, it was bad enough filling in the first 61 page monster. That took me 4 weeks, this one has to be done today. Why is everything so difficult?
Gave up and phoned instead…that was just as bad, I hate explaining myself, I get tied up with what’s in my head and what’s (not) coming out of my mouth! I have a sheet of paper in front of me to read from that I wrote earlier, so why can’t I scan down and read it. I forget things I should say, and say things that are not remotely helpful.
I tried to blog this yesterday but the blooming tinternet wifi dongle had no signal. So much for a daily blog…
I lay in bed this morning thinking about forums and talking to ‘she who prods me in the face with a paw and meows loudly 1cm away from my face’. I must explain, I am unable to get out of bed first because I am furthest in under the gunwale, and Mr Hs has to get out of bed so that I can get up. I am awake early, he likes to lie in. Piewacket black cat chivvies me along every day to get up as early as possible and fill her’s and Dozy’s bowls.
Forums– forums to support those with Alzheimers/Dementia and their carers..I know, I know..it seems crazy to think that sufferers should have the where-with-all to join in sensibly…well, let me tell you I and some others still have some live brain cells left and will continue to use them for as long as possible. Anyway, I digress. Support I thought, that would be helpful, and yes they are lovely lovely people, but reading the threads are TERRIFYING for a sufferer as it is full of carers sharing their stories and sadness of their loved ones whose brain cells have died. Bloody hell, I thought, here I am wishing to get the absolute most out of being compos mentis, only to read how I am going to make my loved ones suffer when I am not. It feels like the things that I want to talk about, cannot be spoken about and needs to be hidden from the carers….It is too raw, and too honest to be openly spoken about.
Living Will – I was unable to find any threads about those who wish to have a living will. I want one, hell’s bells in no way do I want my family to remember me with such sadness, and trauma of having to care for me. I have talked it over to Mr Hs and when the time is right, when I am no longer me, should I become ill, pneumonia or such like, no way do I want any treatment. No resuscitation, no treatment end of..
And now to go get food, because the fridge is empty and Mr Hs will need feeding today.
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