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.