Hi everyone ,new to the forums, My wife has just been diagnosed with PPMS.I thought when she was told that ok. We can deal with it,and for a while we just excepted all the problems , appointments and mishaps. Now a year on and the problems are mounting . I work full time and care for her the rest of the time . I have been advised to take a break or take up a hobby,but that is not as easy or practical. It sounds selfish but I’m burnt out . Does anyone understand what I am going through. My wife will always come first , that’s a given ,but how do we adjust our life style to allow us a better life. Cheers Phil.
Hi Phil, you are not alone. My lovely husband has primary progressive, diagnosed in 2009, I have seen him go from a fit and able man to a man who struggles to walk more than a few steps. Yes, I do get exhausted, I try not to over mother him as that I imagine would make him feel inadequate. But I do everything in the house that a couple would normally share together. I try not to show how tired I am or how sad I get as it must be much worse for him having MS. I find people always say oh how’s David doing? Nobody seems to see the carers. Sometimes I just want to sit and cry. But then I think, come on, I am healthy, I bet he would give everything to feel that healthy. So I pick myself up and keep going. It does feel like it’s us against the world being a carer, you suddenly change to this person who has to look out for everything and try and protect. It is hard, but know that you aren’t alone.
I have seen various links saying we can get grants to help us with a break, or to get things to help us, but I looked at the forms and gave up. Why is nothing simple? My husband was also referred for a wheelchair months and months ago, still waiting, the lady at the NHS said we just have to wait! We have looked at buying our own, but a quickly running out of funds, having already purchased various walker, shopping scooters etc. So we hardly go out now.
Try and get at least a few minutes time for you, I walk my dog which gives me time to think. It is tough - but we love them, they love us and I guess that means a lot. We are here if you need to ask anything.
Thanks Cornish Girl, your words are much appreciated, knowing I’m not on my own. We also have a dog and I do like a good walk out just to clear my head. When we do go out , it’s like a military operation, knowing where we are going, taking everything we might need ,after a while that takes it’s toll and then we just don’t bother. This is when my wife gets frustrated and upset.Dont get me started on getting help on information or applications . One form looks the same as the next ,page after page …Red tape !!! Anyway thanks for your kind thoughts . Cheers Phil
I go into respite to give my wife a weeks break. Don
I know sweetie, it is a bit of a campaign, but I am trying to treasure every minute I have with him, I have to remind myself sometimes to take a breath and remember we have to treat ourselves at times too. Now and again I will go off for one night to stay with my brother in Oxford, it’s such a treat and David can cope with that. Remember to try and do small things for you. I am lucky in many other ways, so I try to think of those too and not think ahead too much. Since David was diagnosed he has never once complained, he always laughs and says it’s the best thing that ever happened to him, as I never know if he has drunk too much or if it’s the MS. Got to love that. Here if you need me.
Hi Don, yes i guess that’s another option isn’t it? Good idea, we could look at that Phil. Is the respite place ok Don? Not sure what part of the country you are in. x
it is blooming wonderful I am i.n Kent
CornishGirl said: ‘it must be much worse for him having MS’.
I don’t think I agree with that. Often being the one with the disease/disability is actually easier than being the partner and carer for someone with progressive MS. Or in fact any other disabling condition.
Neither of us chose to have MS, but it’s affected my husband just as much as it has me. He doesn’t complain, apart from semi humorously saying (frequently), ‘I’m run ragged’! But he does most of our household chores, the shopping, washing, ironing, hoovering, cooking and everything else. He takes care of the car and the cat. He helps me with whatever I need, whether it be helping me to dress, walking behind me with the wheelchair when I do my little bit of walking on days when I don’t trust my legs to hold me up. He’s helped me with getting to grips with my stoma, helped me on and off the loo and with all kinds of personal care. He always comes running when I need him. He takes me to every appointment (and omg there’s been a lot lately). He describes everything as ‘our’ appointments and meetings. He accepts MS as part of his life, just as it is mine.
We are relatively fortunate, I am able to be left at home alone for a few hours, so long as it’s not too long. So he manages to meet up with friends for coffee or a walk. He goes to the gym most days and has a whole load of friends there.
He also takes the time to care for his mother who lives in a home with dementia, and our elderly neighbour, and even his ex-mother in law.
My husband is a man in a million. He deals with MS and caring for me with good humour. And yet I know it’s probably at least as hard for him as it is for me. And I think it shows that Phil and CornishGirl, and Dons wife too, as well as all the other partners who care so lovingly for those of us with Advanced MS, are doing a fabulous job too. Those of us with MS didn’t expect to be where we are, but I for one am fortunate in having such a good man to care for me. I would never say he has an easier life than me.
He sounds like a great guy Sue. You’re right, one in a million.
Hi everyone , sorry I haven’t posted back ! , Thanks for all your replies. Some really good advice.l actually been on a major downer . Let things get on top of me , then Christmas ,another bad time. Had a really good heart to heart with someone . I really opened up ,got upset , but felt a lot better . Now trying to be a lot more open about our life . Trying to deal with each crisis as it comes a long.
I don’t know if this is helpful as I have ppms but don’t require care. I employ a cleaner who comes in once a week and does the household jobs I can’t manage eg changing my bed, hoovering the stairs etc. But I helped my mum with what I could when she cared for my dad who had MND which is also a very debilitating illness.
Have you thought about applying for carers to come in and do the difficult things like bathing, dressing, putting your spouse to bed? It is NOT cruel or any other negative feeling you may have. What it means is that you have the strength, energy and time to do all the good things together, to enjoy your time with each other. While they are busy you can push the hoover around or just rest.
Benefits can pay for this. It is means tested and depends on how much care they need, but you’d be surprised to find that when they look at your finances they don’t consider what the house / car etc is worth and any money in the bank is classed as both of yours, so only half of it is considered.
I don’t know enough about it to give specifics but it is worth looking into, social services can help and I know my dad felt much better about carers doing the heavy jobs though I’d never expected him to accept help as he was a very proud, dignified and private man. But they were so good, they knew what they were doing and they treated him like a person, joking etc. I don’t think a visit went by that I didn’t hear dad laughing with them.
I know not everyone wants this but it is an option, my mum could spend time with dad as his wife again and not his carer. She still had to feed him and do other things but all the heavy work being lifted from her shoulders lightened her stress and tiredness and she still talks to some of the carers, they became friends and dad looked forward to them coming, it was like having visitors three times a day.
Hope this helps
Hi Cathy ,. Thanks for your comments, just seen our MS nurse. She suggested the same , a home help , We are a bit sceptical,as we have not received any help before but now think we could do with the help now and again. Cheers Phil.
I’m glad you’re considering it. It’s not for everyone but it changed my parent’s relationship back from carer and patient to the loving couple they’d been for 50 years. You’ll always hear horror stories but there are a lot of experienced and dedicated people who work very hard and have my greatest respect.
I care for my wife full time
its no good thinking you can carry on full time work etc ,it’s not possible
you have to make drastic changes in your lives and accept it ,take all the help you can get and its not easy to get
we left the uk when it got to the point where my wife cannot be left alone ,so I gave up work and off we went
13 years later obviously she has deteriorated and its hard ,there is no carers system here but we have the best
life together with the cards we have been dealt
adapt don’t fight it ,it makes me sick when I read how hard it is to get help in the uk now for all illnesses
sadly as you say a simple trip to the shops or walking the dog is hard but don’t shut yourself I get out together