Hi all, I hope you do not mind me asking this question. Sorry for thel ong post! My mother had MS , progressive from age 25 until age 68. She was a warrior! the home care,the hospital care, the respite and eventually nursing home care - all never really had an understanding of the diversity of care needed for MS as so many different, varied and changeable symptoms for the diagnosed and family, freinds to get their head around to try to help, understand and show the care needed without intruding on your personal space/zones too. They all tryed to feed her when she had lost the abillity to swallow - as a family we became the nurses advisors- crazy. Theres a lot of adaptions to take on with MS… My question is - what would help you? what kind of care is preferred? there is not one Nursing/Respite centre dedicated to MS only in the UK as far as I can find , I would love to change this one day and I am only just reaching out to see what I could do to possibly change things. Winsford, Cheshire the services where limited, no specialist nurse/care and we had to take Mum 30 miles away to see the consultant. Citys may be different? Not everyone has that luxury of family/freinds to help nor the money to buy equipment to help - why cant there be more available standard care to everyone no matter their budget. Im asking you what would you like to see /or place to go to for respite or even to live one day so you get the best care you need ? Mums room was just a small room, pleasant but basic - we would have liked to have stayed over - a place that felt more like your living room to all relax in rather than visiting a hospital scenario as she was in the home for 2 years.
Hello Jo.
You pose a difficult question. My main advice is to get what you can. Help with moving and keeping clean is the most important. I’ve had a long life of work and I’m quite happy to sit and do nothing. I prefer to live alone and have carers come in. Best wishes to you and your mum.
H Jo, I`ve just had a 6 night stay in a local hospice. The care is second to none. There isn’t a place solely for people with MS anywhere! There used to be, but it cost £1k a week to go there! Sadly they closed down. I have been looking for places to stay, but there are only nursing homes which take MSers. They are mainly for elderly people. Bouds x
I am sorry about your mum she was my age 68. so she had PPMS for 43 years?
I have varied needs, but still try to manage with basic care. I live in sheltered now i am having to move as the flat is too small as i have graduated to wheelchair more for getting out to the top of the building as it has a massive slope to get to my scooter. i could do with it in the flat but there is simply no room.
I think sheltered actually for MSERS IS FINE. Sheltered with live in care worker manager there are many about still. We are changing to indpendant plus which means no care worker on site but we bring our own in. I think having MS its better to try and keep independant. I would like respite but i found several hotels who cater for disabled and i find stroke and MS have similar things going on so it is ok for me to think about that.
In our place we have a room for family so they can come and stay a few nights with residents if they have too.
Occupational therapist can come and assess us now and help with aids. the best thing for disabled is a wet room, hand rails, care lines, and chairs you can get up out of, adapted wheelchair spaces and scooter place. my kitchen is so tiny i would never get a wheelchair in there.
there are a lot of care workers about who can deal with MS. I think like steve said he just gets on with it with a mix of things.
I have a cleaner, and somene who does my bed and also a lady who washes and irons my clothing. my daughter washes my hair we bought a mobile salon basin thing which is ace. I want to feel NORMAL for us long as i can. I feel normal lol just got so much pain now and feel frustrated as i worked all my life went all over the world, and now i am too tired to do much.
I also taught myself how to cook safely and easily without efforf.
I believe the trick is to be as normal as you can, and stay mobile as long as you can.
we do have some great support where i live in gloucester so i cant grumble over that.
If i had money i would build a proper sheltered accommodation for disabled with MS or any other disease.
we went to look at one to buy last week. well really it was built about 20 years ago fab inside accommodation really big and would have been fantastic for me. BUT STEPS all outside, and inside steps too. NO RAMP OUTSIDE no way of getting to the front door without steps, i mean what the hell was that all about lol. STUPID.
yes if i won the lottery i would commision proper places for us with a gym, yoga, water therapy, and meditation rooms lol.
oh and a pet corner to stroke cats and dogs and chickens lol.
we have a lounge its way too hot so thats another thing that would have to go lol. no HEAT just subtle no wonder why older people get sick its a germ magnet living here. I am running a film matinee on saturday Downton abbey, as i know a lot of the older people wouldnt have seen it on the cinema, and we are having popcorn and icecream as well.
I just think we need to be treated NORMALLY.
I do think there is normal standard care out there perhaps like you said it depends where you live? thank you for thinking about our needs and taking time to ask and try to help us.
OH yes there should be someone on hand who can help with forms, and applications too. x
Hi JoBee, I’m not sure what would be the best option as we are all so different and so is our MS. My personal priority has always been to get and be prepared as best as I can, when I was first diagnosed I made the decision to try to remain as independent as I could, I saved up and still do and started to get things altered at home, first a wet room, what a joy when later I ended up in my wheelchair , so too were other things ,stairlift, car adaptations etc . Guess you have to look at what your own priorities are and go from there. My home for a good few years possibly seemed unnecessarily adapted, but now 14 years on I use everything and thankfully had the foresight to plan ahead. Having MS can be expensive and although we are lucky in UK that we can access help there’s often a long wait time which is why I started early . I hope to be able to remain in my own home .
Hi JoBee
I’d also like to thank you for your interest and hope to change our options. Like your family I live far from any resources and would have had an awful commute to see my Neuro, but after diagnosis I asked to be referred to someone nearer home and was sent to an excellent one closer to home who specializes in ms, has the nurse working closely with him, and did more than “yes, you have ms, your type is not treatable, see you in a year”. He sees me every 6 months and if a problem arises, on the next Tuesday at clinic. He immediately referred me to an OT and Neuro physio and the ms nurse was present at my first visit with every pamphlet, referral or phone number I could possibly need. I think that’s what’s important.
I’ve since met 2 people in my area still under the first consultant, who have no access to a nurse or any other service and hadn’t even been seen since diagnosis which inn one case was over 8 years before. That, I thought was disgraceful. I told them about my request for transfer and current support and they’ve both changed their whole outlook on their future.
Like the others I’d like to stay in my own home. I’ve moved from an old unsuitable house to a modern one which my parents lived in and had adapted for my dad. Between myself, my family and friends and a lady I employ once a week I manage quite well.
I used to be envious of those who lived near these facilities with pools, hyperbaric chambers etc but realistically I don’t know if I’d use it. I too want to feel normal. I think your idea of respite homes is a good one, but just having the knowledge of what is available and where, and the basic referrals to the best resources in your area is more important, though I can’t think of a way to get that information out. I wouldn’t feel half as content as I do now had i not been regretted to my current medical team.
Reading back, I don’t know if I’ve answered your question, and what the solution is, but thanks again for your consideration.
Cath
Wonder where Jobee is?
\Boudsx