Dementia: Witnessing release is a comfort

blue_irises_by_naglets-d2yie11I am watching my Mum slowly succumb to her dementia daily, but it feels like I am seeing it from the inside.  I don’t know how to describe this so you can understand.  I am invisible in a room full of people, Gill has dementia so do we include her or not?  Am I the only one who is experiencing this feeling of when this is my turn, because you may not get dementia.

My Mother’s name was Iris, and like the flower she was a very complex person.

It was Sunday 14th June, our family had somehow managed not to avoid each other and all visited my mother together.  So, my Dad, my Brother and Sister-in-law, Sister and Brother-in-law, nieces and my daughter were in my Mothers room at the nursing home.  The rift in the family growing wider and wider with my sister and her family on one side fighting some bizarre war in her head with us all, and everyone else at ease with each other on the other side.  My Dad torn in two in the middle  My Mum lying between us, her breathing ragged but looking peaceful as she is in her final hours.  She does not seem aware that anyone is with her, but I believe she can hear us all and knows that for the first time in years we are all in the same room together.  We spent the day chatting about our memories, listening to some music, and talking generally amongst ourselves.  My mother may not have appeared conscious enough to join in, but it felt like it was normal family get together with people chatting and laughing and I am sure she was with us.

We had the call later that evening to say she had passed peacefully away at 10.34 pm.  I believe she had waited until we were all together.

I cherish having visited her every day the weeks at the end.  My daughter and I played her favourite hymns on her iPhone and watched her tears.  We played her favourite music and sang along (out of tune but no matter it was fun).

She was no longer able to swallow, so she had no food for weeks, and finally she could no longer have liquids.  Every day the nurse and doctor would say “it won’t be long now, she may pass tonight”, and the next day there she would be defiantly showing she was not ready to go.  Fourteen days she continued without any liquid, and everyone was amazed by her stubbornness, and strength of character to fight to stay with us.

One of the nurses sat down with me and explained how they knew she was not in any pain, at the end I don’t think she was, before I am still not sure.  Her death was natural without any pain relief so I am sure she was aware of her last day with us all.  Yes, I can now see that perhaps it is easier for us to want her to be given pain relief just in case, but then it could have changed her perception of her final hours.  So have I been wrong?    No; my view now is that a small amount of morphine ‘as and when’ may have been better when the sores were painful.  But, then at the end when she had no pain = nothing.

The carers thought she was lucky they said, most people never have visitors.

I designed and created the Order of Service on my laptop, and my brother had it printed up.    We found a poem that my mother had cut out and stuck in her book and I read that at her funeral.  We had no flowers apart from a single spray that lay across the coffin from the family; blue irises and white – roses, chrysanthemums and others.  Instead of flowers my Dad wanted donations to ALZHEIMER’S RESEARCH UK if people wished.   Thank you Dad x

She is gone

You can shed tears that she is gone
Or you can smile because she has lived
You can close your eyes and pray that she will come back
Or you can open your eyes and see all that she has left

Your heart can be empty because you can’t see her
Or you can be full of the love that you shared

You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday

You can remember her and only that she is gone
Or you can cherish her memory and let it live on
You can cry and close your mind, be empty and turn your back
Or you can do what she would want: smile, open your eyes, love and go on.

Written: 1981 David Harkins 1959 -Silloth, Cumbria, UK

(This is also the poem that the Queen chose to be read at her mother, the Queen Mother’s funeral which is why my Mum loved it as she was a staunch royalist)

I am glad I had time to make my peace with my Mum, I am glad I had time to sit with her, talk to her and be back in my family.  I am glad I witnessed the end of her dementia, it has left me feeling comforted with my own dementia.

A new chapter with my family now begins.  I need to visit my Dad on a more frequent basis to support him, and do my part in taking care of him to stop my sister from mentally ‘abusing’ him.    This scares me because staying strong and being capable takes more effort than I think people realise.  Still, it’s what we do isn’t it?

Dementia: – Warning; an honest reflection of my thoughts about end of life

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I am sharing my thoughts about being with my mother who has had Vascular Dementia for a while and is in the final stages of life, but at the end of her 80’s she has had a reasonably long life.  Some of what I am writing may upset some people, just saying so that you can choose not to read on if you wish.

Yesterday, the family sat around my mother’s bedside in the nursing home.  Each day we are waking up to wait for the phone call to say she may have peacefully passed away but she is defying everyone by staying with us.   This is the third day without any food or drink, however she is not in any pain and looks so peaceful.   Yesterday morning she opened her eyes and looked at my Dad.

“Hello my lovely”, he said.  “What have you got to say to me today?  He is stroking her head and face.  “Is there anything you want to tell me today?” he asks?  “I expect you want to tell me you love me.  I know you can’t talk so just blink if you want to say you love me”  he says gently.  My mother blinks, he tells her he loves her.  I quietly cry to see such a touching scene between them.

After a while, my Dad falls asleep in the chair next to her, at 93 he finds it hard to stay awake for long periods without ‘naps’.   My sister reads her book and I start to read mine, music is playing low in the background; Doris Day, Harry Secombe, Vera Lynn.  It seems like the first time we have just sat there in silence with her.  My brother and sister-in-law will join us in a while.

I watch my mother breathing shallowly, the pulse on the side of her neck beating steadily.  I think about my awful childhood and she was so nice to outsiders but so abusive to myself.  It seems a million years ago and in a very distant part of my life now thankfully.  I made my peace with my Mum when I was able to visit her alone a few weeks together which was needed for both of us I think.

I look at her now and know that at some point my dementia will mean that I shall no longer be able to communicate, or understand what is happening around me.  It makes me feel sad when I am sitting with my family and having these thoughts alone, but then it is not appropriate at all for me to talk to them about how I am feeling.   When I hear the carers and nurses talking about ‘how it is for people with dementia’ I want to tell them not to talk like that.  I want to say, people with dementia are not THEY, they are me, maybe you at some point.  Of course these feelings are ridiculous because nobody can identify with the person lying in the bed at the end of their life with dementia, can they?

My Dad is reluctant to let my Mum go at the same time as dreading it.  We are sitting around her bed and I know that we are willing her to pass peacefully away with us there, and not torment us in the waiting to start grieving.  Does that sound terrible?  A fierce woman, a strong woman, a woman with a will of iron, never afraid to say what she thought.  Never wanted to be overlooked.

The home she is in, is full of lovely caring nurses and carers, most of whom are Eastern European.  They treat my Mum with such love not just kindness.  They tell her they love her, and she has recognised and appreciated that.   My daughter will be the person who will be making sure that I am cared for the same, and I hope that she is diligent in her monitoring of how I am.  Not that I don’t think she will be, but I hope she isn’t too busy to do so.

I have been functioning fine, I have been cleaning, cooking, washing, ironing and taking care of my Dad, but when it comes to organising and making decisions I struggle and leave that to my brother.   I am no longer able to cope with the stress of family difficulties between each other like I used to.  My sister treats me if my dementia is worse, my brother treats me as if I am fine (which is better I guess), and my Dad is probably the only one who understands how I am now and does not expect too much from me.  My daughter thankfully, continues to check on me daily to make sure I am fine as she understands how it all affects me.  But all this is not about me, this time is for family and my Mother.  I just happening to be having my own difficult time of it with a broken marriage, moving to a new area, and coming to terms with my Mother dying.

Thank you my friends for listening to me.

Dementia: Out of the mouths of babes..

I have just watched the most beautiful piece of film I have ever seen.  I can guarantee that you will have never seen dementia viewed in this way before.

How do you be with someone with dementia?  How do you communicate?   Children are the sweetest gift ever given to anyone and in this film young people talk about their grandparents who have dementia and how they deal with it.  If it doesn’t bring a tear to your eye then I will be amazed!

Produced by the BBC (British Broadcasting Corporation) for CBBC (the first ‘C’ standing for ‘Childrens’) this is a programme that is on air for children’s viewing times.   I feel that this should be shown so that all adults can learn from children how to help their loved ones with dementia.  Click on the link below to watch it.

My Life – Series 6: 3. Mr Alzheimer’s and Me

Josh, Ella and Hope all have one thing in common – they have a grandparent with dementia. It isn’t easy having to be ‘the grown-up’ when their grandparents get forgetful. But all three of them are determined to help them as much as they can. They all have their different ways of coping, which they want to share with other kids going through the same thing, and have recorded personal moments with their grandparents on their own cameras. Josh is determined to help his grandad remember and secretly gathers mementos for a memory box. Ella decides to organize a sponsored walk to help raise money for research into the causes of dementia. Hope’s granny gives dementia a character – Mr Alzheimer’s – to help Hope come to terms with it all.

29 mins long.

Do not smile with pity in your eyes

Do not smile at me with pity in your eyes
because then I see an empty heart
Do not write with sadness in your tone
I can still feel every word you write
Or speak in a way that simplifies your voice
in case somehow I have lost my intelligence

When you think of me look at who I am
not who I was when we bounced against each other
Remember the times we had being creative
laughing and talking till all hours
Tthrowing our dreams in the air hoping
to catch them when they floated close enough

Listen when I speak to you because I am still here
I can still feel the same when you discuss a thought
I can still laugh and throw ideas your way
You may see a few cracks but don’t dwell on them
enjoy what I still have and am inside
Understand what I have to say is important
worth a serious listen and response
as you would anyone else in conversation

Think of me with the love of the friendship
we have embraced before, secrets we shared
happy days, the troubled times we put to rest
Now bring that to our communication
A knowing smile, words special to just us
Remember my personality and understand me
Its still lurking in me waiting to peek out
and surprise you.

How do you reach someone who appears a shell?

Speak to me with music that I listened to
being collected on my iPod ready for use,
Speak to me with photographs that I have taken
perhaps seemingly random but
those decaying buildings held sway for me once.
Read to me: poetry, a crime novel, no romance please
George Elliot; my favourite classical author

Know me, that I am not a stereotype
When touch is important, know that I HATE it
Unless I have a manicure or pedicure
Know me in dyspraxia and dementia

Brush my hair I love that feeling
Give me my 18” of personal space
know me that I needed that once

Know me that I love all things alternative
and that my sense of humour may be dark

It matters not
that you may not see these things in me
But know that is what shaped
my personality to the person I became
And to each of you, dear friends
I showed you a side that remained yours alone

So
Do not smile with pity in your eyes
Let me see instead, love, understanding
or a wonderful wickedness of a life enjoyed

“I feel like something at the bottom of a woman’s handbag”

Saturday – 28th June 2014 – Alzheimer’s Meeting

I was invited to a meeting to form a pilot scheme for younger people with Alzheimer’s and Dementia. It was quite a way to drive and we got to a place which was in fact in a building in a Chemical Company which supports the charity Alzheimer’s Organisation; their conservatory which is on the side of a very nice cafe/restaurant.

There were workers from the Alzheimer’s Organisation from three different surrounding areas in county and I got to talk to two of them. The are all enthusiastic and clearly caring people.  People arrived gradually until there was a good roomful of people living with dementia and their partners and carers. I initially talked to two of the staff full of enthusiasm and I passed a couple of flyers for Dementia Mentors website which they said they would look at. As others arrived they seemed to know each other I think from another group they attend. The conservatory had tables and chairs set out in a cafe setting and people came in and sat randomly around the room or in groups of friends. Because of how we were all sitting facing some with our backs towards others it was not conducive to chatting and getting to know anyone you didn’t know, which for us was everybody. No sooner everyone had arrived, we were told to split up into three groups and talk about what sort of group we wanted. The friends stayed where they were, others gravitated towards the far side of the room and hubby and I were asked if we would join the table behind us with just two people on because the guy had mobility problems. The guy I shall call Sid clearly had mid stage dementia and did not speak or appear to have awareness of what was going on. His partner on the other hand did not stop talking. We had a worker with us who was going to facilitate this discussion between the four of us.   (All names have been changed to protect peoples identity).

Phil the worker was enthusiastic and started throwing some ideas about for us to talk about and ‘Sally’, Sid’s partner started to talk about what she wanted from the group. I don’t want to see leaflets on tables, she said, I don’t want to hear anything about dementia, I want a social group where we can go out and enjoy ourselves. Right, that is perfectly clear. I am tired, she explained, of everyone talking about dementia, I want somewhere where that is not about illness at all.  (Actually Sally, I think you need a support group for carers and some respite care for Sid, I thought at the time).

I had up until this point given some ideas, discussing a newsletter, learning new things in their new life with dementia, such as photography, cooking, creative writing mini courses, days out doing group photography, walking etc. The more Sally talked the more puzzled I began feeling. Hang on, I thought we were here to talk about a group for people with dementia, at least that is what the conversation I had with the ALZ worker I had met after being diagnosed who said there was no support groups suitable for me. I could not assume that Sally was Sid’s carer and I had to know, so I asked her if she had dementia? No, she answered, I am with Sid. I had this sudden realisation that no-one had asked Sid what he wanted, so I asked him. With his progressive dementia he couldn’t really give an answer, he goes to another day care place and does a lot of memory activities with them, and seem to be confused about where he was as he was talking. He sat not speaking having difficulty holding his mug of tea, Sally telling him to put it on the table before he spilt it down himself. I could see my hubby watching and wondered what he was thinking. Sid did not appear to want to put the mug down, or do as he was being told. Sally was off again saying the things she wanted to do, and I spoke to Sid. ‘Only people with people who have dementia can understand what its like to live with it’ I said to him, and he nodded in agreement. I asked him about the day care he goes to and he tried to talk to me about it. He then said, probably the most important thing that was said in that room “I feel like I am something at the bottom of a woman’s handbag”. Do you mean being here I asked him pointing around, ‘No’ he answered. Ahh you mean all the time I put back to him understanding how he was feeling.

The more I listened to Phil and Sally talking, and hearing the animated voices around the room the more I realised my expectations were far too high and I was not enjoying the experience.

The discussion was over, time was up and it was time to go! Before I left I briefly spoke to a worker and said that I thought it was going to be about people living with dementia wanted, and was a little disappointed to hear so many carers saying what they wanted. “I guess it is about both” was the answer.

Okay, how this meeting made me feel:

  • Angry
  • Silenced
  • Invisible
  • Like being treated like a ‘patient’
  • Cheated
  • UPSET

I thought this was going to be about what we, the people with dementia wanted out of a group for support and social activities that we could do with others, and that includes partners and carers who understand that sometimes we say the wrong thing, behave in a way that may not be quite right.  It is right the partners should be there, but let all those who live with dementia, have their own voice, their own control, and their own place to keep their minds active, not something that is organised by everyone else.

How many websites, groups, and advise site both professional and amateur are there for carers. How many forums are for carers?  Many.  Why is this, it is because what do you think when you hear someone has dementia?  You think of an elderly person towards the end stage of the disease, not always knowing who family is, someone who has lost the understanding of what is happening around them, someone who may be shouting out and being difficult and finding it hard to communicate.

Well that is at the end stage, not the beginning, how do you know that you do not already have some kind of Alzheimer’s in the making? Give it a few years and when you know something is ‘not quite right’, something simple such as your visual perception not working right, not keeping up with work, you will be wondering whats wrong. If.. if that happens and you are in your 40’s, 50’s and 60’s you will want people to treat you as they would want treating themselves, not to talk as if you no longer have a voice or part to play in the control over your own life.   Memory Loss is not loss of intelligence, get it?

I just want to finish saying:

I AM NOT INVISIBLE, I AM INTELLIGENT, I CAN STILL TALK TO YOU, UNDERSTAND YOU AND HAVE A DISCUSSION ABOUT WHAT IS GOING ON IN THE WORLD.

Please don’t think that by helping our husbands or partners that it equates to giving support to me.

Thank you for listening if you got to the end of this.

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.

 

 

 

A proud Mum!

A couple of days ago my daughter phoned me from London and told me she would be walking with some of her work colleague’s at Sainsburys Supermarket for Sport Relief http://www.sportrelief.com/.  She had recently expressed her dismay at the way some people are taking a “selfie without make-up” for breast cancer, saying what good will that do without donations to go with them.  She decided that she wanted to do ‘something’ rather than just give a simple donation and joined in the 12 mile walk to raise donations.  Now this is a person who has clinically flat feet, and who lately has complained of intense pain in her feet through wearing rubbish shoes as she tells it.  Working only 20 hours per week she does not have extra cash to buy good shoes for her feet, but here she is walking to raise money for others.

She got up at 5am to get ready for work at 6am, worked until 9am and then joined the walking team to start at 10am.  Their aim was to walk carrying buckets, to each main supermarket store collecting donations on the way.  After 8 miles the area manager surprised them all by joining them for the remainder of the way, and as she put it he could have sent an email to wish them well, but chose to walk instead.  She text me a couple of times with her progress saying her feet hurt but was enjoying it.  After taking a detour they finished the walk having completed 16 miles, in a pub for a drink paid for by the area manager.

When she was home she phoned me sounding exhausted, it was brilliant, she said, we were all buzzing, we must have collected about £200 plus our own sponsorship donations.  I hurt all over, I have enormous blisters, but I want to do it again, she told me.   I want to start doing things for charity, I want to run the marathon, it feels so good although I know that sound selfish!  There is nothing wrong in feeling good helping others.  She needed to eat, bathe and sleep next.  A hot bath would have been good but the landlady had the taps removed to save money leaving only a shower, it would have to do I told her.

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There is a matching one on the other foot – ouch!
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Claire is the one with the orange bag in the front 🙂

Right now I am the proudest mother ever not just because of her achievement but her wish to help others.