Hi everyone. My husband has SPMS, diagnosed in 2004 as RRMS and now over the years has progressed even with good medication. Up to now we have managed quite well, me as the main caregiver but recently I have noticed that I am getting very frustrated and angry with him. I no longer think of him as my husband, only a patient who is becoming increasingly difficult to manage. He has incontinence problems as well as having very weak legs so he has to go around the flat in his manual wheelchair now. Sometimes he finds it difficult to transfer, from the toilet to the wheelchair or the bed to the wheelchair. He falls down a lot and since I cannot lift him I have to all 999 each time.
I need a break from caring duties but I cannot leave him alone in the flat more than a few hours. He does not really want other carers to come regularly. My health is suffering as well and all I want is a break and to be able to get away for a few days to relax. I do not have any family or friends nearby who could take over.
I’m so sorry to hear that you’re struggling like this, I’ll just jot some random thoughts that you might find helpful. It might be worth giving the ms society helpline a ring as well as they might be able to put you in touch with somebody locally if you are not sure where to turn.
I wear an alarm around my neck, which connects via the phone line/ broadband to a team who can phone for help for me. They do a quick assessment and if it’s just to be picked up off the floor they send a couple of people around and they are normally here within half an hour to 45 minutes.
They have this wonderful inflatable chair sort of thing that they slide underneath me while it’s all flat, and then they press the button and it’s inflates and within seconds I’m sat upright and they can then help me get back into my wheelchair. I think it’s called care line, and it’s arranged via my local authority and cost me about £4 a week paid via monthly direct debit. If it’s a bit more serious and I’ve hurt myself they can arrange ambulances or firemen and the ones here in Cardiff link in with st John’s ambulance so the problems with emergency ambulances and delays aren’t an issue. Now that I am almost permanently in my wheelchair I very rarely fall, but when I moved around using sticks or holding onto walls they were an absolute godsend.
You need to speak to social services for advice about having some care for your husband and for yourself. I know from talking to my carers that they often do what they call a sitting call, and generally it’s where the carer stays with the disabled person for three or four hours keeping them company and keeping them safe while the partner can go out and not have to worry for a few hours. They can go shopping they can go to visit friends they can go for coffee for lunch or any number of things, what you do with your time isn’t important to them, what is important is that you get a break.
I get carers visiting four times a day. They get me up, sorted out my lunch and my evening meal, and put me to bed. They look after all of my toileting needs. I have a hoist, supplied by the occupational therapist from social services, and my carers use it to get me up and down in and out of bed and onto the toilet. The occupational therapist is bloody good, and any equipment that I need they can order for me. They are the experts in making sure that I can be as independent as possible for as long as possible by assessing me to see what equipment Will make a difference. If you need to grab bars or handrails they can assess where they need to go and can arrange installation of them.
Social services can arrange respite for you. Options that they look at include temporarily arranging accommodation in a care Home environment, or increasing the care requirements for your husband for a period of time so that you can go away safe in the knowledge that he will be looked after.
The different devolved governments have got different rules about how much you do or don’t contribute towards the costs of care. In Wales, for example, I only pay the first £100 per week towards my care and I get 21.5 hours every week. As I’m single nobody needs respite, but I get two hours extra three times a week where I can do whatever I want to with the carers help. I use it for batch cooking, dog walking, popping to the barbers I know that some of the other clients Will have a three hour session and they can go on the train to the nearest town to do some sightseeing or to go to the seaside for fish and chips.
Make sure that you’re getting all of the benefits that you’re entitled to. He will be eligible for PIP, and it’s there because it’s recognised that being disabled has a financial impact, and the PIP is there for exactly that. It isn’t means tested and if you get the higher award (which it sounds like he should be eligible for) it’s £600 or so every four weeks and you can trade some of it in for a motability vehicle or Power chair.
I’d also suggest getting in touch with his MS team. They should have access to occupational therapists who have an in-depth knowledge of MS, and to neurophysiotherapists who can do some phenomenal work to improve walking ability and balance. I have a thing called standing frame, provided by the NHS, that helps me stand upright in a good position because it eases spasming in my feet and legs, maintains bone density in the legs, and helps stretch my back and shoulders.
There really is a lot of help out there, and you need to start shouting for it. One of the things that my social worker first said to me was that what they needed to understand what kind of life did I want to be leading, and that the care plan they would come up with would aim to meet all of those goals where they were social, medical, mental health, and my ex-husband also had a care plan that the same social worker completed to make sure that his needs were met as well. Adult social care is in a pickle at the moment so I doubt they’re gonna make it easy for you to get all of this help so you really need to put your feet down and get demanding if you’re not getting anywhere quickly.
I really hope that’s helpful for you. I have no doubt that plenty of other people Will also put their ideas down, and never forget these forums are used by people who really understand so if you just need to have a meltdown to get it off your chest this can be a really useful place to do it. Sometimes just saying what a bloody struggle is can be like taking a weight off your shoulders so go for it!
Fingers crossed that it all goes easily, if you find you getting stuck I usually find the three best places to go are my MS nurse, my GP, and the ms society either by ringing the helpline or by reaching out to my local group in Cardiff.
Many thanks for all your tips!