Hi all. My name is Ian, I am 58 and have been caring for my wife for 30 years. She has very advanced MS and has not been able to engage in conversation for a number of years. It can get a bit lonely so thought I would try a forum. Is anyone else in a similar position ? Ian
Definitely similar but not quite the same: my wife also has fairly advanced MS (unable to weight-bear now), she has no trouble talking, it’s just that what comes out is usually nonsense, she has a bad habit of basing an answer on an assumption, (which is usually wrong), it does tend to make conversation very trying and eventually pointless.
She definitely has major cognitive problems, some conversations are akin to those on the space missions with a ten second delay in the response, one thing I noticed even when she could still walk, she couldn’t walk and talk at the same time.
Yes,it can get lonely for everyone,you will get fantastic supporters in here,don’t be frightened to ask.we know how you feel. Ian
Hi Ian. I am a carer for my elderly mum. I sometimes get lonely too, especially with all the restrictions at the moment due to the virus.
My mum is 90 and has severe arthritis in her hip and is housebound.
Are you able to have some time to yourself?
Hi Ayjay - I recognise those symptoms
HI Ian thanks for the support
Hi Karen. I can get restbite now and again but to be honest I don’t know what to do with myself - how daft is that!
Ian, I think that’s quite normal, as the body is adjusting to peace and quiet, in fact doing nothing can have a certain “novelty” to it! Try to be very aware of your body, so many people say “get up do this, do that” when in fact all you need is peace and rest. So many people just haven’t got a clue about being a carer.
I went on holiday last year with a friend who is a very experienced children’s social worker, we met at a hotel for single travellers, so she has never been home or met my son. She told me that what I said about my life was a real eye opener, she had absolutely no idea of the sort of things I was left to deal with, and the battles to get what my son needed as was entitled to.
Hello Ian, welcome to the forum,
You’ve come to the right place to meet other people in a similar situation to yourself.
We run weekly online meet ups for cares to chat informally over a cup of tea and take a short break. You can join in as little or as much as you’re comfortable with. Details are here:
We’ve had great feedback on these sessions with carers saying how helpful they’ve found them, do join us if you’d like to