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Help, advice, what do I do

Hi, I’ve just registered on this site however I have been reading posts on it for years. I’ll introduce myself as a part time carer for my mother who has the worst (in my opinion anyway) form of this horrible disease. She’s had it 30 years and has just slowly got worse and worse. She’s now 79 blind, hardly hears anything and is now unable to stand, walk or basically do anything. She’s just had a catheter fitted which she loves through the night but hates through the day, she says it’s uncomfortable sitting with it. My dad has her 24/7 and seems to cope ok, other than lifting her isn’t doing his hernia much good. We asked about getting carers in to help wash her couple of times a week but they looked at the house and said there was no way they could move a hoist about enough and that was that, so sponge down on a chair it is, which isn’t ideal considering she can’t wipe her own bottom or stand to let us do it and half the time doesn’t even know she’s done anything (sorry hope I’ve not offended anyone but no point in dressing the truth up). Other than to have a moan and try and make myself feel better what do I want from posting this. Someone to wave a magic wand and make it all go away would be great, but guess that’s not going to happen. Advice on how to cope, how much worse will this get and how much longer will it go on for, how do I drive home knowing she’s miserable and walk into my own house and try to forget about it and live my life. Doctors all say she won’t die of ms but die with it, guess infection or something will get in and do it’s worst. Doctors and ms nurses are all lovely people who tell you what you want to hear to get you out of their room and enable them to tick a piece of paper to say they’re providing a wonderful service, but for the patient the whole system is useless and done her no good what’s so ever. I was determined to keep this short, whoops failed at that, sorry.

hi lucyannie

you could try Direct Payments which would enable your mum to employ someone to care for your dad.

Boudica (poll) knows all about these and is the best person to advise you on how to get them.

it is a miserable existence for your mum at the moment.

has she claimed everything she is entitled to?

perhaps this is something you could look into.

what you need to do first is make sure that your own health doesn’t suffer.

then once your mum has claimed what she is entitled to, consider a wet room which will make washing a lot easier.

good luck to you and your parents

carole x

Thanks for that Carole, yeh we’ve checked mum is getting the right benefits. My brother and I tried to get them to move house years ago but oh no they’d manage where they are and I think they think they are managing. My dad manages to turn a blind eye to the state they’re in and mum just doesn’t know. I just hate seeing her so miserable.

Hi I was so sorry to read your post. I can relate in a number of ways, particularly when you said how do I cope and do I drive home knowing she is miserable.

It is so hard to see people you love suffer. Life can be blooming’ cruel. Regards coping I think you do because there is no other choice. My mum has ms and to be honest she isn’t coping very well and neither am I but we are coping that’s the important thing just a bit badly. maybe you are coping… in your own way

Being miserable, well I have now accepted that I will never really be truly happy while mum is living ’ in her nightmare’ as she calls it but there are moments when I am happy and also it does help put into perspective what us it important in life. I always carry around a bit of sadness now. But I try to make mum happy with little things taking her little things to tempt her to eat calling around to see her when not expecting me etc.

I also selfishly have days where I do not contact her or visit when I know one of my sisters or niece is going and push the whole ms thing as far away as possible. Could this maybe work for you… do you have family members supporting you?

As far as how long and where will ms go next… no one can answer that. Personally, I think take one day at a time and don’t think ahead. Deal with here and now. It’s helped me to do things like at the moment my mum is really low and I’m setting her tiny challenges each week. Maybe taking some kind of action might help. Could you not tackle housing or care issue surely the local authority have a duty of care.? I know my mum has a social worker for that reason.

Look after yourself

I have only one suggestion: do your homework, so you have a plan when a crisis happens. Experience has taught me that you need, among other things: a thorough understanding of your parents’ finances; and good knowledge of what is available in your area in terms of sheltered accommodation/residential care/ short term convalescent care when someone needs nursing back to health after a hospital stay. Visit the Homes, meet the staff, get to know which are OK and which are to be avoided like the pest. No minute of preparation on these matters is wasted: when suddenly your dad has to go into hospital for a couple of weeks (God forbid, but these things do happen), you won’t have time to start the process from scratch. If you have done all this already, then great. If not, I think it should be a priority.

It usually does take a crisis to get things moving, I’m afraid. Quite honestly, there’s no use beating your head against a brick wall, trying to persuade old people to make a move before they have to, if they are not so inclined. But you can get some plans lined up.

Alison

Thank you Carole, Manc Lass and Alison for the support and pieces of great advice. Suppose I just needed to know I’m not alone in this and other families are in the same boat. I always knew that but reading actual people’s stories seems to make it more real.

Thanks again everyone.

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Hi, can I add a couple of ideas which I had to get in place for my self and my hubby?

I dont have MS, but was wrongly diagnosed with it for nearly 10 years.

I have a similarly disabling condition.

I have been unable to stand , walk or weight bear for several years.

Re the catheter…I had the urethral type some years ago, for 5 months. It was the most misery making thing of all my problems. It was uncomfortable, smelly and I hated it. So I swapped to a supra pubic catheter. Oh it is a million times better. But it does involve a small surgical procedure. The tube goes through the lower abdomen and into the bladder.

It is so comfortable, I forget I have it sometimes. As a wheelchair user, it is easier to conceal under my clothes and it sits inside a cloth bag, which hangs from my wheelchair arm.

I need hoisting for every transfer. I did have a floor hoist for some weeks and ugh…it was horrendous! Even my strong husband had difficulty pushing it. he had to move out of our bedroom, as the hoist took up so much floor space.

So we applied for a council grant and got 2 ceiling hoists put in. One in the lounge and one in the bedroom and my hubby moved back in! I also have a hospital type profiling bed, which makes sitting up easy.

I have a carer who comes in most days and we have become close friends over the last 6 years.

I am in the middle of sorting out a care agency for the few extra hours.

I pay for this with Direct Payments…an allowance from Social Services.

Life is difficult but still enjoyable and worthwhile.

I hope some of my ideas will be of help your dear mum.

pollsx

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ps have you thought about maybe having a respite break for your dad?

pollsx

Thanks Pollsx, it’s good to hear someone else found the catheter uncomfortable and smelly. Dad goes away for odd weekends to get a break and my husband and I move in for the weekend. Mums one that doesn’t like to make a fuss so I’ll try and get her to moan to the nurse about catheter and suggest the better one you have. Thanks for all your advice.

You and your mum are very welcome hun.

pollsx