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?