Hello from a grey East Sussex.
I think one of the worst things for those of us wit a chronic disease is to witness the fall of a close relative to something really nasty. Because I was very limited in how I could support my poor mum, I felt very frustrated. It still picks away at me now. Here are some of my thoughts if you wish to read them.
Happy Mondays. Steve
Killing me Steve. Just killing me…
Your descriptive writing is poignant and full of imagery. When your first collection of writings is published I shall be first in line to purchase.
My husband’s younger sister aged 56, (my age), has Downs Syndrome and has been in a Sheltered Housing Community for most of her life. There are justifiable reasons for this, and why she didn’t remain in her family home after the age of eleven. We moved from the UK many years ago now, and he stopped phoning her a long time ago. As time passed she had no idea who it was that she was taking to. No idea who he was. His beloved little sister wasn’t there anymore. Just this week, we got the news that dementia is tightening it’s grip on her. She no longer feels comfortable going out, either with her care team or to social occasions, preferring instead to stay in her room, alone. The Home thinks it might be a nice idea to “bring the world to her” and have asked him and his other sister to send some photos and memories, to make a scrap book. It might “jog her memory”. So sad. It was a very grey coloured weekend here. I’m sure they mean well, but we see it as a precursor of what is perhaps, soon to follow. It is indeed a terrible darkness, as you so eloquently described it.
Now, have you read the book Ethel and Ernest by Raymond Briggs? You will be familiar with his work, The Snowman, I’m sure. I read this many years ago and found it just beautiful. Written in cartoon book style, like The Snowman it resonated with me and moved me to tears. I recommend it to you.
Thank you.
Steve, i loved your blog it was lovely to share your memories, all the years of growing up and the love from a remarkable woman. Sadly we often don’t appreciate it at the time that is until we have children of our own. My Nana had Alzheimer disease, sadly when she was really ill she didn’t know any of us and i always feel so guilty for not visiting her at the home but by that time i had babies of my own and it was too stressful and too sad to deal with, my mum and dad often saw her and my oldest sister has fond memories of taking her out in her wheelchair but by that stage she was back to being a little child herself. She died about 12 years ago. One day when the time comes for us to meet again I want to tell her how much I love her and what a good Nana she was.
Michelle x
My family have been along the same path. It is so very sad. You have the physical being if the loved person but they themselves are no longer there. Sometimes they can become aggressive and say/do horrible this gs. You just have to keep in mind it is not them but the disease causing the behaviour. It is a truly distressing situation for all the family. Sending you big hugs Steve. Wherever she is, she knows you again and loves you so very much. Anne x
An emotional read, thank you for sharing.
Sonia x
Oh Steve, such a powerful blog, special memories that you hold close, but also terribly sad, as Alzheimer’s is truly a horrible illness, both for the patient, but especially for family.
Thanks for allowing us into your thoughts.
Pam x