Thank you to everyone for their loving thoughts and wishes. Understandably blog writing hasn’t been on my agenda recently, but I wanted to update you all a little on progress (or lack of it!) …
After 48 hours of very little response, dad suddenly woke up on the Friday afternoon, 12th December, had a look around and exclaimed “What are you all doing here?!“
I’d love to say twelve days later he’s now much better, walking around and is coming home.
Sadly that’s far from the truth.
He’s been very up and down. The care he’s received has been mostly good, the communication processes painstakingly poor. We were told over a week ago that he’s MFFD – the acronym for ‘medically fit for discharge’. I think that really means ‘there’s not a lot we can do for him medically, time to leave the hospital’.
He’s been in the ‘Patient flow system’ for discharge for ten days now, and we’ve yet to speak with a hospital Social Worker or anyone who deals with the process of organising the best place for dad to go ‘home’ to. Sadly he won’t be coming home, his dementia has worsened and he can now hardly stand, never mind walk, after being mostly bedridden for two weeks.
The leaflets all profess that the discharge process is magnificent, with a multi-disciplinary team meeting to all agree what will be best outcome. That will be marvellous if it ever happens.
We’ve discovered that he also most likely has Parkinson’s disease, in addition to vascular dementia and Alzheimer’s. The Parkinson’s seems to be making his body extremely stiff and uncoordinated. It’s so heartbreaking to watch him fading away, bit by bit, to a shadow of the man he was. I know lots of people reading this have gone through similar experiences.
Every now and again there’s a little snippet of joy. When he chuckles at something, or we get a small smile, or he says something that makes sense.
The other night he asked me where I was going to when I left. Then he asked who would be looking after me. I said Barry would. “That’s good.” he said. My hear melted.
He asked last evening what “the programme” is and seemed fine to hear that I’d be going home with mum as she was tired, and he’d be staying where he was for now. He’s not distressed, and the nurses and Health Care Assistants are amazingly compassionate in his new ward since last Monday.
Today, Xmas Eve, mum and I are visiting a potential residential care home that may be ‘good enough’ for dad. Not perfect, I know it’s unrealistic to expect anyone to achieve my high standards! I have the care home checklist and I’ve read through it a number of times. I’m not sure if you’re supposed to go through each one and tick it off, or try and memorise it and fill it in retrospectively? I guess we’ll do our best and see how it feels.
It’s at times like this you suspect having a lot of money may have distinct advantages. You get so much more choice and importantly control. Having said that, I recently heard from someone that they knew an elderly person whose spouse left them a large sum of money in the will, and they went into a care home that cost £35,000 per year. It looked absolutely spotless, but the care given was far from adequate.
It’s a bit of a minefield …
The Xmas period
Four years ago, at 0200hrs on Xmas Day in New Zealand, Barry and I received an emergency telephone call from his mother and she was rushed to hospital. We didn’t expect her to survive. But survive she did! And some. For another three and a half years bless her. Admittedly she suffered a lot in between, but also had some very happy times.
Dad’s prognosis isn’t so hot. Bloody dementia!
This year I’d organised for the four of us, Barry, me and mum and dad, to go to our local eatery for Xmas Day lunch. There’ll be just the three of us now, so we’ll enjoy a meal and soak up some happy family atmosphere, then go and sit with dad who’s unlikely to care or know what day it is.
It’ll be a very sombre and subdued Xmas. To be honest though it’s only one day, and Barry and I don’t really ‘do’ Xmas anyway.
On a lighter note, we’ve organised to catch up with Barry’s family in New Zealand and Australia this evening, so that’ll help us feel a little more festive! He’s been busy organising all sorts of new shelving and things on the boat while I’ve been otherwise engaged, but for the next couple of nights he’ll be staying on land.
And on Boxing day, if all’s calm, we’re going to Lichfield to my older sister’s house where hopefully we’ll catch up with my two daughters, son-in-law, and grandsons.
My heart goes out to anyone experiencing a similar challenge at the moment, and especially to those who have recently lost someone dear to them. Death for all of us is inevitable, I just want my dad to have a ‘good’ death when the time comes, with as little suffering as possible. I guess it’s what we all wish for ourselves and our loved ones.
One day at a time dad, one day at a time <3
14 thoughts on “A rather subdued Xmas”
My heart goes out to you, I know how difficult it is to watch Alzheimer’s take over your loved ones. You are doing such a good job. I understand how powerless you feel, but just by being there, caring and suporting your Mum and Dad you are doing everything you can for them and won’t have any regrets. Look after yourself as well, thinking of you love Al x
Hi Al, it’s heartening to know others understand the challenges in this maze! I’m conscious of the need to find ways to care for my self too so I can be strong for them, thank you for reminding me <3
Sorry to hear about your lovely dad give big hugs to your mum and everyone for me Hun and you take care too Hun xxx
Thank you Karen, will do xx
thinking and praying for you all xx sending our love and hugs xx
Thank you Maggie, I’m very grateful for your prayers. Hope you all have a very merry xmas xx
Sandra and Barry – you guys have a very special place in our lives. Have as good a Christmas as you can. Andy
You too Andy and Helen. It won’t be the best Xmas for any of us this year. Love to you both xx
You are doing a wonderful job, Sandra. I know you take comfort from the small but good things that are occurring with your dad. You will look back on this time later as something you can be proud of helping him and your mum through. Have a peaceful day. Warm wishes, Marilyn
Thanks Marilyn. At the moment I just feel powerless to do much. But I understand what you’re saying. x
Just remember that you are doing a huge amount that helps – being supportive, looking after your mum and your dad, finding a decent nursing home. You just cannot control what is happening to your dad’s health and the hardest thing to handle is that feeling of powerlessness, isn’t it?
Have a gentle peaceful day with your mum – I am sure you’ll do lots of reminiscing with her and that will be such a healing reassuring time. Mx
Thank you Marilyn very wise words xx
My Dad had Parkinson’s and vascular dementia too Sandra so I know how heartbreaking it is to see a strong intelligent man fade away and I hope he finds a peaceful passing.Best wishes to you both xx
Thank you Sandra. Hope you and Bob have a wonderful xmas.x