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.

Author: Gill

I read books and review them. Books are my escape. I have always loved books. I write a blog, I get involved where and when I can in things I feel that are important. I also have Alzheimer's Disease but it does not define who I am. I am in the early stages so you may not notice. So, I will tell you how it is.

16 thoughts on “Dementia: – Warning; an honest reflection of my thoughts about end of life”

  1. My mom was physically and mentally abusive to me as an only child with a single mother. She was an alcoholic. We struggled through the years together as well as apart. When she was in hospice (facility to care for her until she died) we exchanged final words before she died. She said “I don’t know what I would have done without you.” I said the same thing to her. That was our peace making. She died a couple of hours later. I was with her when she died. She was on medications to keep her relaxed and pain free. Her death was so peaceful. The nurses told us that she was dying (a few hours before she died). I saw no change in expression when she died. I didn’t even realize she was dead until the nurse started disconnecting her oxygen. She had a peaceful death. I hope I have the same.

    Liked by 1 person

  2. Mary Smith is right.
    All we can do is listen.

    I think it a very fine thing that you are able to articulate how you are feeling at this time (what with your Mother near the end of her life). And I feel glad to be able to listen and be supportive across the miles.

    Good to hear that your Dad understands how you feel, as I think it very hard for others to understand ICI (Invisible chronic illness). Even harder to comprehend that the person they knew all their life is slowly disappearing. There’s no crutch or cast or cane, just a vague sense of things not being 100% to the observer (if they’re being honest with themselves). Family members who are not realistic are doing you a disservice in not recognising your reality.

    Feel free to share your thoughts while you can. I’m sure it must be comforting.

    Liked by 1 person

  3. Writing, as you continue to do on your blog, can be a panacea for you emotions. You are doing well, and I appreciate that you’ve opened your life to us. Your talk about death doesn’t bother me at all; I’ve experienced it with others, can’t be avoided. While standing vigil at my father’s bedside, he didn’t pass until everyone had left the room for a break. The nurse said that sometimes the person who is dying wants to spare their loved ones from witnessing the last breath. That was definitely the case where my father was concerned. Bless you.

    Liked by 1 person

    1. My mother said previously that she didn’t want to ‘go’ without my Dad, and he is convinced now that she is trying to hang on for him – although he isn’t ready to go yet! We laugh about it because she was and is very stubborn. This will now be her fourth day without food or drink, and it will be her body breaking down and not her desire to ‘sleep’ that takes her we believe. Ever feisty till the end.

      Liked by 1 person

  4. My thoughts and prayers are with you. I know this is a terribly rough time. When I was a caregiver to mom (who was in a nursing home in one city) and dad (in a veterans home that was 3 hours drive away from mom) I was also in a failing marriage, working, and trying to raise two children. I was with my dad when he drew his last breath but mom decided to check out without me being there. I hated seeing them go but I knew they were no longer in pain or suffering. Still it’s hard for us left behind.

    Liked by 1 person

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