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.