Hello. I’m Tom and I’m my 86-year old dad’s carer. He lives in north east Cumbria and has prostate cancer and dementia. For 6 months I’ve been living with him most of the time, traveling home to Surrey every now and again, but moved in full time last weekend. My wife, who’s still working (unlike me), will travel up for a week each month and work from here so that we remember what each other looks like I’m here to learn, share and be part of the community. Thanks in advance!
welcome to the forum. That is a very selfless thing to do.
My advice to you is get all the help you can! Caring is tough especially for someone with dementia.
Put in place plans to keep you sane - hobby time, time for a walk, swim or bike ride if you leave your Dad for short periods.
Hello and welcome Tom! It’s wonderful what you are doing and that your wife is so supportive.
Is your Dad well enough to go to a dementia support group with you up there? My Mum enjoyed going once a week and meeting people like her and I could chat to other carers and we had coffee and cake, It was just a nice informal meet up.
Thanks so much, Penny. I’d love it if I could get him out to a group like that. Once maybe twice a week he might let me take him to the village cafe (a lovely lady there always serves him his green tea in a porcelain pot - makes his day) but mostly he won’t move from his armchair.
So true, Melly. I’m fortunate to have the dogs with me - it allows me time to clear my head - and I enjoy being a trustee (via Zoom) at three amazing charities. Thanks again.
You have to persevere Tom as long as you can. There will be a time when your Dad is too poorly to go out so try and get him out as often as you can. As long as he’s well wrapped up he will be fine! Does he use a wheelchair? I bought a very lightweight Mum for my Mum and it was invaluable. My Mum had a healthy appetite so I used to bribe her with a trip to a teashop (like you) or we would go in the car, buy fish and chips and sit on the clifftops and eat them watching the sea. I have friends who say their parents won’t leave the house and they just sit there until the end staring at 4 walls so you may need to turn it round and say “I must get some fresh air, it’s not good for us being cooped up in here.” Let us know how you get on but a dementia group might be a good start.
It is tough and I would guess you are feeling somewhat isolated. I agree that the Dementia Group would be a good start and you would meet other carers. I find having a telephone befriender helpful as I cannot get to Carers meetings locally. They have usually been Carers themselves and understand the frustrations and it can be a safe place to vent when necessary.
Do you enjoy reading Tom? I have to say starting my Book Club 7 years ago has helped me keep my sanity. You do need to concentrate on your needs and hobbies too. Dementia is a horrible illness and progressive. Can your father be left alone for short periods?
Thanks Helena. I’m very focused on keeping myself well and have a kitbag full of things I do and places I go. Self-care is important for everybody - we can’t give to others if we ourselves are running on empty.
No, not isolated. I get great support and engage with a lovely group of people through Dementia Carers Count’s online sessions. They’ve been invaluable. I’m really pleased that you’ve found something that’s been invaluable to you too.
In my area there are a few care agencies and similar organisations. I recommend making notes in order to help to simplify things. You can certainly find a care company or support network quite easily these days, try looking them up on the internet. You might also contact a few to see if they are accepting new clients by phone or via email. I have a entire folder of care provider information which was useful when I was researching care options. If possible try to vet the care provider in question throughly. Read old inspection reports, and get a paper copy of the current brochure. Insist on doing interviews. I always interview potential new carers to find out more details, analyse their skills and understand their personality. Be prepared for problems. Focus on what is important.
Hi thara - I’m wondering if you pasted your comment into the wrong conversation as I’m not looking for a care agency.
its good you have the dogs with you and a perfect reason to get out of the house for awhile.
You sound busy with your trustee roles too. Thank goodness for technology that means you can participate from your Dad’s.
Tom Can I recommend a brilliant book about a son whose Mum had dementia. It is heart warming, sad, funny and charts their journey through dementia. He writes really well and his journey was much like mine.
I had a spare copy or you could have had it but I posted it to my cousin in Scotland as my Aunt now has dementia.
The Little Girl in the Radiator by Martin Slevin. The library most likely has a copy.
This is a lovely book and is just as Penny describes.
Thanks Penny. Have you read Wendy Mitchell’s books? Sally Magnusson’s ‘Where memories go’ and Eileen Murray’s ‘Caring for Nigel’ are lined up on my Kindle but I’ve just added a sample of Martin Slevin’s book too. Thanks.
@Melly1 Thanks so much for your kind comment last night.
Thanks, yes I have read the Sally Magnusson book but not the other one. I have read several more but can’t remember the titles. For me though, the best one by far is The Little Girl in the Radiator.
I think it was the humour in M Slevin’s book that appealed to me. Even when Mum was really poorly we were able to have a laugh about something we remembered together. Other things she did or said when her dementia was bad still make me smile. She went through a stage of planning how she was going to “escape” through her first floor bedroom window bearing in mind she was 96 and could hardly walk. I think in her mind she was trying to get away from being old and having dementia because she actually loved the staff and her room and was mostly very happy.
It’s beautiful to hear how much the book helped. Truly wonderful. And the compassionate power of humour should, as you’ve shown, never be underestimated. Thank you for sharing your story.
The whole telephone befriender thing sounds really great. I’d like to try that, both to have a befriender or to be a befriender for someone else to rant and vent to me.
I love hearing other people’s caring journeys/stories. I helps me to feel like I’m not alone and like there are others going through the same/similar things
welcome to the forums. I am Jeromiah and I’m a carer for my mum.
I’m sorry to hear your dad has dementia and cancer. I hope you 2 still get along well and have a laugh.
Although my mum doesn’t have it, she often forgets things and says the funniest things especially when she gets distracted and forgets a word or inserts a word in an unrelated topic!
We always have a good laugh over that.
Sometimes she worries about getting dementia.
She sometimes thinks I’m getting it because my memory isn’t always so great either.
I’ve heard that to prevent getting it you should keep your brain active by doing brain training exercises and puzzles and trying to remember lots of info like phone numbers or names. whatever it may be!
I’m not sure it really works but it’s something that I’ve heard