Managing carer's responsibilities with PMR
Posted , 13 users are following.
Just in case there are others who are in a similar situation, I wonder if anyone has ever found help or even sympathy for the terrible dilema of having a condition that others do not recognise, have no understanding of
and little sympathy for?
Apart from Doctors, unless other people know about PMR and its limitations we are very much alone.
I have the awful responsibility of caring for my husband who has had Primary Progressive Multiple Sclerosis for ten years now. He gets worse every week and now has meltdowns at every opportunity. I only have to speak about needing something or asking him not to do something because he is no longer capable and breaks so many things, a full anger fit and shouting meltdown will occur. It is really upsetting I am feeling absolutely drained and despondant. I work from home mostly so I can care for him but he makes this very difficult. Without the work I could not pay the rent or bills even though we have a small subsidy....Sorry to moan and be miserable but there is no one else who seems to care or understand....even my own children have no idea how awful this situation is.I have recently been put in touch with a 'buddie' group who will find him a friend which may give me an afternoon a month of relief... however even that would be marvelous!.
5 likes, 57 replies
tina-uk_cwall christine_fay
Posted
i run 2 holiday cottages in Cornwall and last Saturday I received a phone call from the agency requesting additional information as a gentleman wanted to book our barn from the Monday for 5 days. The agent told me that his wife was in a wheelchair and would I be happy accepting guests in wheelchairs. I explained that of course I was but although the barn was all on 1 level, nothing in the barn was compliant with the disability disablement act. She called him back and the next thing we knew they and their 2 dogs arrived on Monday.
he explained to me that his wife had MS and also a Stoke some years previous and so she was unable to do anything for herself. I cannot tell you just how much admiration I had for them both. His whole life revolved around her and her care and he did this without any additional help and infact the only time he had to himself was when she was still asleep in bed. But even then, this time was taken up walking the 2 dogs and getting everything for that day prepared. I want down to the barn each day to see if there was anything I could do but often there was not other than simply talk with them both which I know they enjoyed. It was a true joy having them both as guests. As far as I'm aware the gentleman suffered from no health worries but I could see just how exhausting his day was, so I cannot even begin to imagine caring for a partner who is as ill as your husband whilst also suffering from a painful and fatiguing condition as PMR.
Your husbands melt downs as you discribe them I assume are an unfortunate side effect of his illness or drugs or both which must make it even worse for you knowing that his behaviour is of no fault of his own. And, it really is a terrible shame that even your own children don't understand. But, I'm sorry I would have to change that and pretty darn quickly. If they live miles away and you very rarely see them then there is an excuse but if they live close by, and even if they have the burden of their own families I don't see how once a month they could not take in turns to give you 1 day off. And, that is where you come in. We talk about trying to educate some of our gp's because they don't understand our condition, well, you must do the same with them, because I'm sorry to say, and I was guilty of this failure too, but whilst we see our family coping with situations we somehow disassociate ourselves with the reality of the situation, but they must be made to know that you cannot cope.
the buddie group sounds brilliant and if you could also get the help of another organisation on board, the buddy plus another help plus the monthly help of 1 of your children I hope will go along way in helping you as what happens very often in these situations the more medically challenging patient is put first, which is only right, but their carer is often not considered at all. Now is the time to change that.
i hope Christine I have not been too mean with you. I wish you both all the best, christina
judytal christine_fay
Posted
Are there any day care places your husband can go to?? Get as many professionals as you can to hear your story... MD's nurses, social workers anyone who might have some resources for you. Or let your kids do the searching for help..
constance.de christine_fay
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Susanne_M_UK christine_fay
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christine_fay Susanne_M_UK
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Mrs.Mac-Canada christine_fay
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I am so sorry you are in this terribly difficult situation. Being a caregiver, especially without support, is hard enough but having to deal with PMR at the same time seems impossible to imagine.
I believe that as women, we are often the ones that battle through everything that is affecting us to make sure our families are taken care of. We tend not to ask for help and maybe bring the "supermom" thing on ourselves because of it.
It sounds to me like it may be time for a family meeting to let them know what is really happening here. It is important that your friends and family are aware of how PMR affects you with it's pain, stiffness and fatigue. It's also important that they understand the extra care required to help your husband manage his day to day living. They need to know about the angry outbursts and how difficult this is for you. Some people are medically saavy but many don't have a clue. It is up to you to give them this information. PMR from the information on the forum and MS from ?? the internet maybe or your doctor.
You need to tell them "I NEED HELP" and ask them to do some advocating for you with doctors, MS societies or any other organizations that can help you.
Someone mentioned the possibility of your husband being given some medication to "smooth" him out a bit. It would certainly be worth a try.
I do hope you are given some respite soon and never, never think you're moaning or being miserable. You have obviously been doing an amazing job but now need a break. Wish there was something I could do but it's a bit far to commute from BC.
.
Hugs, Diana
christine_fay Mrs.Mac-Canada
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my daughter lives in B C near Kelona
julian. christine_fay
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I've often wondered how I would fare in your circumstances, and the answer is probably not very well.
I hope you find some help.
MrsO-UK_Surrey christine_fay
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christine_fay MrsO-UK_Surrey
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constance.de christine_fay
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I can understand your husband, he probably thinks it's nothing to what HE is suffering. He knows his illness is incurable - a terrible thing to have to live with. TELL him you miss him, that you love him, but that it is all too much for you. Tell him you need help or your illness will get worse - which will help neither of you.
Our thoughts go with you.
EileenH christine_fay
Posted
What I'm about to say isn't looking for excuses for him, it is unnaccetable that he treats you as he does when he can be fine with others - but part of that is because he feels safe with you and knows that there is no way you will leave him in the lurch. As you have proved time and time again. It's like toddlers who misbehave, pushing the boundaries as far as they can. If the responsible adult doesn't step in and set boundaries it goes further and further.
Is your husband still able to reason? How would he deal with it if you walked out and said "No more"? Not permanently I don't mean - just enough to make him realise you aren't going to abused - because abuse it is. If he can be fine with others it means it isn't an inescapable part of his illness. If all others see is the charming man and therefore don't believe the abuse - what about a camera so you have some proof? Is there any way of your landlord's father and your husband having some form of shared care?
I do know the feeling about losing the man you married though and there I can empathise 100% - after David's cancer there were a lot of changes to face up to for me. Just a rather silly example: in the whole of our life together I had never gone to sleep at night without his arm round me except when in hospital before the girls were born when I cried myself to sleep every night for 6 weeks. During his illness he found it uncomfortable and stopped. He never went back to doing it. He is very undemonstrative anyway but that which I had had disappeared altogether. He almost never touches me now. I was in hospital 3 years ago - apparently he was beside himself, couldn't work, came to see me every single visiting time - and sat there in silence! He's done that every time I've been ill, never even held my hand when I was s&*$ scared - and it was only after that episode that he even thought about how the PMR affects me.
Part of it is men who are scared by their partner being ill themselves - and how it will affect them. I excused it for a long time because he was very ill and we didn't know for a long time if he would survive - but ME having a minor paddy did eventually break through the protective barrier he had built to seal out his scaredness. He's a bit more helpful and considerate now. He still doesn't help me with cleaning or cooking - he thinks offering to pay for a cleaner is enough...
In your husband's case of course it isn't going to get any better and that must be terrifying for him - and the prospect of you not "being able" just adds to that terror.
I think the others are right - you both need someone un-involved to sit down with you and help you clear a lot of misapprehensions out of the way and work out a way forward. Otherwise this will be a downward spiral into a pit where there is nothing left to rescue. You have opened up to us - now you need to open up to someone who can offer some practical help. We are all too far away to do that and a listening ear and understanding is all we can offer.
MrsO-UK_Surrey christine_fay
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constance.de EileenH
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My husband doesn't exactly express himself either, but he is always there with a cuddle and I often go up to him and say "I need a hug" - he always obliges. There is a drink called Hugo, do you know it? Now he says "a hug or Hugo" - my answer is always the same "both, please".
EileenH constance.de
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No - David can't even manage cuddles! I would ask for one and he'd reply he hadn't time! He is totally incapable of doing anything other than what he is looking at at the time - he really is autistic spectrum I'm afraid
If he's making toast, for example, and I ask him to pass the butter which is just a few inches away from him he can't cope with it until the toaster has popped up! It is utterly bizarre!
constance.de EileenH
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EileenH constance.de
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But if I didn't manage to laugh I'd have to cry...
christine_fay MrsO-UK_Surrey
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MrsO-UK_Surrey christine_fay
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christine_fay EileenH
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christine_fay MrsO-UK_Surrey
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mary68968 EileenH
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EileenH christine_fay
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I hadn't really thought about until this last week but a lot of people have commented about lack of appetite with PMR and I thought it hadn't affected me. But what I struggle with terribly is deciding what to cook for the two of us - and really it is because I can't be bothered to think of something that both of us would eat. David just wants something and chips. In the UK it was relatively easy - steak pies, bacon, that sort of traditional food and he's as happy as a sandboy. I just had to think of something for me and it didn't really matter what. I like meat - but wouldn't miss it a bit now. If he hasn't had meat he hasn't had a meal. I stand in the butcher every Friday thinking "It can't be Friday AGAIN..."
There's so much wonderful food out there but when we go out for a meal when on holiday we have to find a restaurant with something he'll eat - and he just doesn't get it that HE poses the choice problem, not me who is allergic to wheat!!!! In Italy, the land of pasta and pizza...