I have very similar situation with my husband who was a successful business man. It’s heartbreaking to watch the decline. The worse thing for me is when I try to help with his confusion he becomes frustrated and angry. He is aware of the fact that I can solve problems and work things out when he can’t and this makes him resentful and often quite spiteful.
These posts are from 5 + years ago so not hopeful… I just wondered if anyone experiences what I do with my husband who is the one with primary progressive ms. He use to be so active in his job and private life to the extreme. Now 20 years into diagnosis he is the total opposite.He refuses to do anything even simple tasks that are within his capabilities he refuses to do, also he has dementia type symptoms.
My wife is similar, although it’s not that she refuses to do things, she just doesn’t want to do any of the things that we used to do together (mostly outdoor activities, birdwatching, butterfly and dragonfly hunting, [with a camera] or even just walking, she loved walking) until she can do them as she did before the MS prevented her from walking. No amount of cajolery or reasoning will bring her round, she just won’t accept that MS only ever gets worse and not better.
She doesn’t have to do anything around the house as I do everything. Of the two of us she was always the gardener but hasn’t been out there for three years and has just about given up even watering her plants in the conservatory, she has two watering cans in there which I fill from the water butts when requested, they are in there now and still full of water since early January when she asked for them to be filled.
She is currently in hospital in a dedicated Neuro ward and is due out in about a weeks time, (been there since 3.2.18), they have said that they will get a psychologist to talk to her, it’s not happened yet and I doubt it will make any difference anyway but I can hope.
She got Shingles just over three years ago which had a dramatic effect on the MS, from being able to walk one mile (slowly and with a pair of sticks) within three days she couldn’t get out of a chair unaided. Prior to the shingles we would venture out at least three or four times a week. Last year, she used her scooter a total of four times.
I have to try quite hard to not hold it against her, I know it’s the MS, but at the same time she’s not the girl I married 47 years ago, it’s the MS, it’s the MS, I do have to keep on telling myself, but I also have to get on with my life to some extent, I’m not giving up everything that I like to do because she has some sort of mental block, so I get out for a couple of hours most afternoons and she can sit at home and stew in her own misery without me for a while, it’s not completely satisfactory but it keeps me sane.
I don’t know what to suggest for you and your husband but you have my sympathy, and you’re definitely not alone.
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It’s so difficult not to feel resentful especially when I see other MS sufferers getting on with life and making the best of a terrible situation.I suppose everyone is different and will respond to the disease in their own way. I’m not sure how I would respond if the situation was reversed, but I can only think I would try to help myself in any way possible which my husband refuses to do. This disease affects both partners and the able bodied partner has an even harder task trying to deal with the affects of the disease whilst also trying to encourage the sufferer to help themselves and remain positive. It’s exhausting when the sufferer is unresponsive to any form of encouragement it drags both carer and sufferer down … Best of luck ayjay x
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jennilin46 I know exactly what you mean about resentment, but in my case I would say its almost a form of guilt I cant help her more due to lack of free time.
I work full time (more than full time if I’m honest as I can get called out at any time) and then get home about 6:30-7pm prepare food feed my wife then eat. Then prepare her food for the next day so the carers can feed her, by this time its 9:30pm and time to get her to bed once shes in bed I tidy up. By this time I’m shattered but have a stupid habit of staying up having a glass or 4 of red wine doing stuff in my workshop till about 1am!!
I don’t think anyone fully understands the toll on the carer until they have to do it.
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