Dementia and my Mother

I entered the ward and looked around the four beds searching for my mother.  I saw an old white haired lady lying in a bed moving her head and shouting out incoherently and was momentarily horrified to see that this may be my mother.   I turned around for reassurance from my Dad and husband but somehow I was alone, they had stopped by the nurses station to check it was alright to come in.  Retreating I then followed my Dad back in seeing which of the old women he would go to, the silent ones or the person I believed was my mother, I was not wrong.

My mother has vascular dementia and had been in hospital a week following a deterioration in her physical health, however I could clearly see that her mental health had declined also.

‘Hello, hello’ she is shouting trying to get anyones attention.   ‘Iris’ my Dad says, and she recognises him immediately.  I sit the other side of the bed and tell her I am Gill her daughter.   She looks vacantly at me and then at my Dad who tells her again that I have come to visit her.  ‘Our Gill’, she says with some recognition.

This woman is not the woman I last saw, she had dementia then, but still looked like herself, now she was shrunken, her dead eyes darting everywhere but not on me.  Her hair not combed in the way she like it.  In her hands she holds a small soft toy; a reindeer which the nurses have given her to hold.   She feels safer holding someones hand which she grips with a vice like grip surprising for someone seemingly so frail.

My feelings are so mixed up, this is the woman who damaged my brain punishing me with a ‘smack’ to my head with daily regularity or more.  She forgot she did not like me once she developed dementia and now she is towards the end of her life.  She refuses to have her false teeth in and is incoherent but continues to talk, nobody understanding all the words.  I watch my Father sitting with his hand gripped by her, his head tilted trying to hear with his hearing aid what she is saying.  He fails and just says ‘I’m here Iris, Okay’, then he falls asleep.  Lymphatic Leukaemia makes him tired, the stress of seeing my mother like this makes him weary.

I am listening hard trying to make out vague words as if they are important, as if they are the words I will remember when she has died because this is the first time I have heard her speak face to face in over a year.

She has a pacemaker and a chest infection, her kidneys are not working properly.  Her dementia seems to have got more of a grip on her and she is on oxygen.

I sit.  I touch her.  I have not touched my mother in my life before like this.  I stroke her hand but feel unattached to her.  She looks at me with dull eyes and I don’t know whether she is seeing me or not, or what she thinks if she does see me.  It is too late to talk to her of what she did to me, of how we are, or what she feels about me.  Although somehow I don’t think I ever would.

The nurses come and talk to her, they are kind, they are sensitive, they do not know her like I know her.  But her viciousness has gone…..I see her trying to speak, shouting at the nurse standing at the end of the bed, she is kicking her feet; up and down; I want your attention but don’t know the words to say it – She wants to go home.  That is all that she is interested in, going home.

She knows me and then when the nurses ask who I am she says she doesn’t know who I am.  My father explains that she never sees me very often.  I now have feelings of guilt, but I could not bring myself to visit someone regularly who hates me so vehemently.  I have kept in contact by phone which has maintained my mental safety having spent three years in counselling to overcome the damage she did.

I am sitting there, I am gentle with her, she does not deserve this, but I need this to be like a daughter that has always been part of a loving family.

My Dad on the Sunday we are leaving is ‘off’ with me, I am not sure why.  Maybe this is the old way that they both treated me.  My husband comes down and joins us, there is a conversation which is not conducive to me being a great person.  I ignore it because I know silence is the most powerful tool.  Then I am asked a sexist question so I make it very clear what I think; ‘us women are stupid aren’t we’ I say.  Nothing more, I have made my point that I was listening and that conversation is over.  The subject is changed.

This house is where I grew up being put down emotionally and psychologically.  You are useless, you are stupid, you are a whore.  I was thirteen when my mother told me I was whore.  What is that I thought, I had no idea then.   I left home to escape, to grow into someone who could believe in themselves.  It took me forty years and three years of counselling to get there.

Now I was sitting at the bedside of my Mother, her gripping my hand telling me and all the nurses she loved them.  The pain cuts like a knife.  I have never heard her use the word ‘love’, apart from telling me nobody would ever love me.  Her words feel as empty now as they have always been.

Back at my fathers house ( my old home)  I washed, cleaned, ironed, and tried to make things better before I left to go home.  As we are leaving my Dad says to me ‘I can’t see that she is ever coming back to this house because I can’t look after her’.  There is a sadness when he says this, adding if she ever comes out of hospital.

Family is extraordinarily painful when we have alway been fractured.

 

 

 

Today is another great day

Hubby was sorting out some memory sticks from a cupboard and handed me a pile of mine that I had forgotten I had and on one is some of my photographs that are missing!  I had forgotten I had put some on there so am pleased to have them back. Yay!

Dementia Mentors

Yesterday we had an online meeting for the Dementia Mentors project that I have become involved with www.dementiamentors.com .  This is a site for people WITH Alzheimer’s and Dementia throughout the world, MADE BY people with dementia and Alzheimers.  It is to support people who have been newly diagnosed and show them that we LIVE WELL with these things not suffer from them.

Only people with Dementia and Alzheimer’s knows what it is like to have them so rather than reading a leaflet this site is to reassure the recently diagnosed that we understand and can show that life is just as fulfilling and positive by offering an online meeting with a mentor who really understands.

I did not realise how little there is out in the wide world for younger people with Alzheimer’s and Dementia who still have high cognitive functioning.  Most of the groups and support available is for older and more advanced stages.

Memory Cafe

The last time I saw my Consultant she introduced me to Aileen from the Alzheimer’s Association and we chatted about what support there was available for me which was appropriate, she said she would look into it and get in touch with me.  Today I had a phone call from her to say that she was looking at a pilot scheme for Younger Early onset Dementia/Alzheimer’s people to start a Memory Cafe in the Derbyshire Area.  Brilliant!  I am looking forward to this first meeting to see what it should be like, what do we want out of it.  I do love to get involved in something worthwhile, it gets me fired up with a purpose.

Today is always another day..

 

 

 

 

Disaster on the software/hardware front!

It struck after getting a new computer.  The question was how to transfer photos and documents from my Asus to my new Macbook Pro – yes a luxury that I already love.  I have most of my photos backed up on a Toshiba external drive and needed to format my drive to be FAT or whatever, so copied the files back to my Asus…………….but instead of adding them it didn’t.  Did it overwrite the files? No and I have no idea quite what it has done.  My original files are there, well most of them but my ‘story’ I have been writing (70,000 words so far) has gone, the only copy left is from October 2013 😦

I am mortified, both my writing and my photos have gone, so much for having kept them safe on an external drive.  All my wedding photos but  thank goodness Mr Hsg has got as many as I had.  Apart from the pieces I have posted on here, with my memory problem I will never be able to rewrite what I have lost.  I thought it was safe keeping it on an external drive but no, I should have printed them all out, you can never beat paper copies.

There is no point in being upset, I have to try and continue using what is left.  I have a file with photos that I had include in my writing so can guess what I was writing about and start again.  I will never remember anything I have written without them.

Onwards and upwards.

 

21/03/2014 – Tests to check my eyes

I was summoned to the Treatment Centre to check my eyes.  I had the usual visual field, GDX and another test and all the results were good.  Fabulous! That’s what I always want to hear.  The consultant asked me questions and finally said, I have never heard of the symptoms you are describing, he mused.  Do I look smaller one side to you; no I answered it is usually when I am reading that it occurs, although my perceptions of buildings and road are weird.  I find it fascinating I laughed, and he agreed.  This sounds like a problem with perception and your brain he concluded saying he would write to my Doctor for a referral back to my head consultant, although it would probably be just for notification only.  What an interesting Alzheimer’s Journey this is turning out to be!