Radio 1 Newsbeat have today done a feature on dementia. It was a hard listen. A young lady called Hayley described her father’s rapid decline into Pick’s Disease and how his whole personality has changed and how she struggles to love him as he is no longer the same man.
I was in the car with Mabel tonight as I tried to listen to Hayley’s heart-felt and honest words. Mabel then opened the car door at the traffic lights and I was brought back to earth pretty damn sharpish.
I did hear enough though, enough to inspire me to write in to Newsbeat and ask them to pass on my best wishes to Hayley and her family.
I then arrived home to an email from my wonderful father. Now, I usually just share his words without a forward of any kind, but tonight, inspired by Hayley’s story and her mum’s strength, I feel I should add a few words…
My dad is, without doubt the kindest man you could ever hope to meet. He gives so much of himself and expects little in return. He has always been slightly odd, a bit of an eccentric, but his whole family were the same. Beautifully old fashioned with strong morals and a slightly bizarre sense of humour.
He has loved my mother since he was 17. His life, 4 years ago was ravaged by the early signs of vascular dementia and throughout every stage in this hellish journey, he has always put my mother first. Always. And, he has conducted himself at every stage and with every care professional and every person we have encountered on this journey, with the utmost dignity, kindness and sincerity.
Here are his latest thoughts…..
By My Dad
Having a quiet day at home waiting for the plumber to arrive to fix one of the toilets (which doesn’t flush) when my phone rings. It is the care home and I immediately think Jane is unwell (more than usual), but no, the nurse wants an update on her continuing care. “Have you a funeral plan in place? Just for the record of course!”
She continues, “Oh, there is nothing to worry about but we’d like to know who to contact if,” blank space left. “We usually use…….” (and here she mentions a firm in town).
Oh boy! I have to sit down and give this some thought.
“We would love her to be here for months or years to come,” the nurse continues, “but it would be wise to have these things sorted out.”
I interrupt her gently to say I will go through matters tomorrow as it’s best to do things like this one to one in person.
I saw Jane at the Christmas fair a few days ago. There was a lot going on with various ladies selling this and that and a raffle (I didn’t win anything) and relatives and staff galore. She was sleeping in her room unaware of the entertainment (a local band), a grotto for the children and the arts and craft stalls. She seemed settled and no worse or better than the previous time I had visited.
Well you could knock me down with a feather ! It had not crossed my mind that I might get a phone call in the middle of the night to say that Mrs T was perhaps knocking on St. Peter’s gate and nothing was in place to deal with the “arrangements” that would be needing to be done fairly promptly!
My head is in a bit of a whirl going over possibilities regarding this sad occasion which will come around far too soon for her. I, however, must have the courage to formally put to paper my and the family’s decisions about her final journey. Oh dear it sounds awful doesn’t it? I know that she will not be embalmed, wrapped in bandages and all her worldly possessions (including food and drink) collected and then to sail down the Nile to join the Pharaohs in that famous valley that we visited on our holiday in Egypt not too many years ago. Is there an afterlife ? I wonder. I’ll ask Ra next time I see him shining brightly in the sky.
No – I should not be silly or morose. Jane, although terribly missed and loved by all who knew her, will be treated reverently and amidst the tears and painful hearts we will be proud to have been part of her extraordinary life and be blessed by her genuine care for all others.
It is quite right that they should know what arrangements have been put in place now.
As Sarah’s bloggo readers will know, her life has no real meaning now and perhaps it might be a blessing in a way if Jane does “slip away peacefully” sometime in the not too distant future. I know it will be very hard for all the family but it is equally distressing now as the agony continues.
Darkness has now descended upon the house and I hope this little story has not shrouded your evening.
Love to all x
I too am waiting for “that” phone call about my mum. Her care home regularly review her notes and check that the arrangements previously made for when her time comes are still valid. I send you my love and support, it is the most appalling disease.
Oh Alison, it really is. Thank you for your words. Sending love and support back xxx
LikeLiked by 1 person
Thank you, Alison. I hope you are coping through this awful experience. Sending lots of love and strength to you xxx
LikeLiked by 1 person
My thoughts are with you Sarah and your dad. I know how hard this will be, but I am sure that you will all pull together and support each other as we did. Xxx
Oh Zena, thank you so much. Our thoughts are with you all too at this terribly difficult time. Sending loads of love to you all xxx
A few things I know about that phone call: first, you never expect it, even when you should, and second, every time the care home calls, you suddenly can only expect the worst. My mother had a terminal illness and yet when I got that call, I thought, “Really? TODAY?”
I for one am not saddened by your post, instead I find it exceptionally comforting to know that others are having the same feelings, and writing about them for the rest of us to read. My dad lingers on with the disease, living life to the absolute minimum, and as much as I don’t want the end to come, I also really do. Tough position to be in. Thank you so much for sharing.
LikeLiked by 1 person
Thank you, my lovely friend. xxx
Thank you for sharing this, I feel less guilty about the same feelings about my Mum. She sleeps most of the time now and as you say, much as I don’t want her life to end, I really do. It is no life and I’m so relieved that she is totally unaware of her situation. Sending love and support to you xxxx
LikeLiked by 1 person
I watched Hayley’s video yesterday in tears and I read your blog too in tears.You are both wonderfully brave ladies and your thoughts are comforting to me as I too go through losing my mum to Dementia. No guide book through the journey but your words really do help others, it is truly heartbreaking in a family. All my best wishes to you.
Oh Juliet, I am so sorry you are also going through this terrible thing with your mum. There is no guide book and no one prepares you for the different stages and all people with dementia present differently, so it is incredibly difficult! I started my blog because I couldn’t find examples of what vascular dementia was and what we could expect. I wanted to find out how other families were coping, but struggled to find real stories I could relate to. I hope my blog does help, even if just a little. Best wishes to you and your family. Keep strong and cry when you need to…..sometimes it’s the only thing to do xxx
Lots of love xx