This is my first post. I don’t know where to turn at the minute. My mum has suffered from MS for almost 40 years now. She has had relapsing/remitting MS, but I feel this has now progressed to the next stages. For the last 15 years, there has been little change in comparison to the earlier years of her diagnoses. Her GP said he thought her MS had ‘burnt itself out’ (his expression). My mum started with what we thought was a relapse a few months ago. She had difficulty with walking the short distances to the toilet & other rooms in the house.To explain, she was unable to walk unaided before the ‘relapse’. She required full support with both arms by myself or my dad.We would walk backwards supporting both her arms while she slowly walked forwards (kind of like a slow dance). When the new changes started, she was really struggling to do this and felt a lot more weakness in her upper body too. Her GP put her on a course of steroids, then a second one. They made no difference. We plodded along as things were, then approx 2 weeks ago everything took a big downturn.
She is now unable to bear weight at all, never mind walk. My dad struggles to get her off her chair and into a wheelchair to go to the toilet or to bed. She is leaning so badly to one side that she is basically bent double sideways off the edge of any chair she sits in. We are trying to prop her up with pillows, but she simply leans over the top of them and ends up even more uncomfortable. She doesn’t have the strength to straighten herself. We are looking into buying her an adapted chair with full supportive side wings, but there is a lead time of at least 4 weeks to get one. My dad is also helping her to eat and drink as she cannot tilt a glass fully up to drink as her head just keeps leaning forwards. She is also struggling with eating as she drops her food and her tremors are much worse than before. Her speech is now very difficult to understand. She has had a slight slur at times when she is tired in the past, but now it is constant and it is very difficult to make out what she is saying. She has been getting very confused, has no memory of recent events and unable to answer very simple questions. She doesn’t feel she is confused at all though. She also struggles to put across what she wants to say and cannot form the sentence a lot of the time. An example of the cognitive problems is when I asked her if she wanted some paracetemol for her headache, she said no, then struggled to say what she wanted. It turned out she wanted paracetemol. She also told me she spoke to the doctor on the phone for over 20 minutes, yet when I asked what he said, she was unable to tell me anything they spoke about. My dad then told me she had been on the phone for no more than 3 minutes. She has had a couple of instances of hallucinations also which she believes are true. All this has happened within the last 2 weeks! I have insisted my dad call the docs tomorrow to get them out to see her. My parents both tend to be ‘head in the sand’ type of people who don’t want to think about the issue of things worsening and don’t prepare for anything. When I try to raise the issue, my mum just gets upset about me suggesting she is going to get worse and need additional help that we cannot provide. Its like she thinks im being cruel.
To give some understanding, my dad suffers from Fibro, Arthritis, COPD & Diverticulitis. He is nowhere near strong or well enough to be taking this on, but feels its his responsibilty and refuses to see help for it. I try to ask him what will happen when he is unable anymore? When he collapses due to his health problems? I am an only child and I suffer from Fibro & ME (my fibro is significantly worse then my dads) and I know I don’t have the health or strength to do what my dad is now doing. In fact my husband is my carer and we have a young son. I have to spend a lot of my time in bed or can’t leave the house due to pain & exhaustion. I don’t know how to proceed. I can’t force my dad to seek help (which he says he doesn’t want or need, even though when I phoned today he was laid out on the sofa in pain). I worry about what will happen when they turn to me and I can’t physically do what’s needed to be done. I have told them this and they both say they know I can’t be a carer due to my health, but still, no help or additional care is being sought.
I suppose really Im looking for some advice about whether how my mum has progressed so suddenly is normal and what help could be available for them. I have read about NHS continuing care, but given my dad says he doesn’t want anyone coming into the house as they’d only be in the way, Im at a loss for what to do.
My first thought is whether your mum has an undiagnosed UTI? Has she had her urine tested? That can lead to quite serious cognitive problems as well as a physical decline.
So I’d urge you to make sure this has been tested for.
Regardless of this, it does sound as though your parents need some help. But you can’t force it on them. They have to choose it, or have it chosen for the, by circumstance if things deteriorate any more.
If, as you say, they have the doctor coming out tomorrow, then maybe there will be more of a sense of where things are going for them.
I assume that your mum wouldn’t allow a Local Authority ‘needs assessment’ for her and that your father wouldn’t allow a ‘carer’s assessment’ for him? Both of them are entitled to this, regardless of how much or little money they have, as you doubtless already know. I think a priority is getting them to permit this and starting the ball rolling. If they’ll have none of it, think about who you could recruit to your cause. A trusted family member or friend of your parents? Your husband? Their GP? It is perhaps worth an informal ‘no names’ phone chat with Adult Social Services yourself - they must deal with this sort of thing all the time and might have some suggestions about how to coax old heads out of the sand. Failing that, quite honestly, you probably have to wait for a crisis. Crises, alas, are often nature’s little way of blasting through immovable objections. They’re better avoided, obviously, but you know that already. If you can’t persuade your parents, then you might have to resign yourself to waiting for circumstances to take things out of your hands and theirs. If that has to happen (and I hope it doesn’t) it won’t be your fault! Good luck. Alison
Thanks so much for the replies. Indeed a crisis did happen. My dad wrecked his back and had to call an ambulance for my mum 4 days ago. She’s now in hospital, totally confused and not understanding why she’s there regardless of how many times I’ve told her. My dad is at home unable to do anything as he can’t get out of bed, but they won’t admit him to hospital. Right now I’m running between pillar to post and I’m sick myself. I’m up with my mum every day, trying to sort her out and then checking on my dad and basically forcing him to eat. I have to see my mums neurologist tomorrow to find out exactly what’s happening. She can’t tell me anything herself about tests or anything they’ve done as half the time she doesn’t even know she’s in hospital. The nurses, on the 1 occasion I got to speak to them told me the neurologist would tell me everything that’s happening. They havent told me she has a UTI and there’s nothing in her notes about it. Hopefully the neurologist will be able to tell me more tomorrow.
I just wish they’d listened to me months ago and not left me in this position. I’ve a young child to look after too and no siblings, neither has my mum and my dads family aren’t close so aren’t interested in helping. I’m in so much pain with my Fibro and exhausted with my M.E. I just hope the assessment for her care that they do offers the help she needs.
Hang on in there. And, above all, don’t - just don’t - let them discharge your mother before her needs have been assessed and a domicilary care package is agreed and in place. If this means sending someone from the LA out to assess her home environment - and it probably will - make sure you’re there for that visit: they probably won’t get the full picture from your dad.
If your mum is in an acute hospital, they might want to move her to a cottage hospital or even a nursing- or residential care home while the care package is sorted out because these things aren’t terribly joined-up and can take a while. Never mind: it will give your dad a chance to recover his health. It is also your chance to have some grown-up discussions with him about how he can best do what any good chap wants to do, which is to do his best for his wife, and getting him to see that this doesn’t and cannot mean he has to do everything himself. He’s going to be buckling at the knees, and could probably use some help with accepting that fact without feeling he has failed in some way. He might even need permission to let go, a bit. You could be a great help with reassuring him as he wrestles with these big changes.
The thing for you to keep in the back of your mind always is a clear objective of using this unfortunate crisis to make some positive change happen and to resist any pressure to let things slide back to the mess they were in before. Call in all the help you need, make all the fuss you need to. This is an opportunity to set things on a better and more sustainable footing: don’t let it pass you by. Good luck.