Hi everyone
My mum was diagnosed with MS when I was 3 (46 years ago). She is now 69 and in the past 15-20 years she has moved from relapsing-remitting MS to Primary Progressive MS.
She has 2 carer visits 4 times a day, which are only for toileting/washing.
My dad is her main carer but he is not well himself. He just had an operation for a bleed on his brain and is still trying to do things he is not able to do. I visit every couple of days but I have fibromyalgia and ME so struggle with my health myself.
My dad will not make phone calls or deal with social workers, OTs or health professionals. I do that. I’ve also had to get him to call emergency out of hours doctors multiple times as he just seems to leave my mum when she clearly needs hospitalisation.
I am currently waiting on an ambulance to take her to hospital. She’s had a bad flu and currently is not eating and barely drinking. She is on antibiotics for a UTI (which I had to get as my dad didn’t think it was anything bad).
I now can’t understand a word she is saying. She does struggle with speech and I am one of the few people who can understand her, but now it is just grunts. She can’t communicate with me and is very confused. She’s had 4 hospitalisations in 4 months and the demerium has never properly left her.
I feel at the end of my tether. She needs to be in a residential home for safety and care but as she doesn’t want to go in, my dad won’t agree to it. My problem is that he is not coping at all. I have spoken to our social worker, who says they are adults and can’t be forced.
I honestly feel like I am constantly waiting on the news that she’s gone. I can’t be there 24/7, but every time I go to visit, it seems things are worse. There is always something new.
I honestly don’t know if she’ll get through this hospitalisation. It’s like slowly watching someone die right in front of your face and not being able to do anything.
I’m an only child (as is my mum). so I don’t have anyone to talk to about this.
We don’t have an MS nurse. Can anybody recommend any company/place who offer more support?
It’s a hard job, sitting on the sidelines when you can’t fix it. I do think the social worker’s right, though: an adult with capacity to make decisions is as entitled to make bad ones as you or I are. The bar for incapacity is - quite rightly - set high, as it should be in a free country.
I think the only thing for you to do is to help where you can and be a cheerful and supportive presence in their lives. I appreciate that this might require you to grit your teeth and bite your lip at times. I think that adult children can underestimate what a help they are just by being there. I feel sure that your loving presence brightens their day and lightens their load even though life is a struggle.
Thanks so much for your reply. I hope they can feel my love and support. It just feels like we spend so much time fire-fighting, the normal parts of life gets left by the wayside.
Hi Lisa,
It sounds like you are going through a lot of pain and frustration over this. You’re doing what you can - but you can’t be held responsible for things you can’t fix. The things you can, and do, offer sound really valuable.
Unfortunately I don’t have a magic solution, either. But reading your post, I did wonder whether you might at some point give Samaritans a call. I say this because I used to volunteer with them. I think sometimes it can help people to have somewhere to just “vent” - just talk things through, with a complete stranger, in confidence. It does take some courage to ring (and a bit of persistence), but if things really get too much for you it might just help.
You’re providing support… you need support, too.
That’s really tough. I can’t think of any magic answer but I’m wondering if her current hospitalisation is an opportunity for you to have a discussion with hospital about your perception that she isn’t safe at home - for the reasons you have outlined and see what they say.
Also have another discussion with the Social services dept/ social worker and get them to recommend what to do - given everything you have outlined. Perhaps point out that she is seriously at risk health wise ( maybe put it all in writing).
There are various organisations that provide help in the home. Some years ago we used Helping Hands for my Dad. Not cheap but I think we got some assistance from the local authority