The burden our carers carry

My wife is often overwhelmed by the implications of my diagnosis, and confused by my stoicism. She feels “bereaved” even though I’m very much alive. I think she thinks about getting old together and all the things we can’t do, such as go on adventurous holidays and travel generally. I think she has an overly negative outlook, but given her rather tragic life experiences, is completely understandable. Google and talking to friends may not be helping I think.
I am quite fatalistic about my future but I am conscious that my disease has altered her life and will make her my carer. At the moment I still work but I’m not very mobile and don’t drive, which means that she’s a taxi service.
I don’t know how to support her, even though I understand. I feel very guilty and sometimes feel she would be better off without this. We have a child who has just left primary and my wife also has to pick up all the extra work of being a parent when I can’t.
53 Male PPMS, ES 6. Still works FT. Diagnosed in 2022. Starting DMT soon. Still processing the life-changing implications.

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That sounds very tough for both of you. I think that all we can do is our best. By that I mean, making the effort to be as well and functional as we can be and operate as independently as we can: use the mobility aids, get the adapted vehicle if that is possible, do the healthy lifestyle things to stay as well as we can be, try not to get so bogged down in our own troubles that we forget to be an involved and loving and supportive partner etc etc. If the people whose lives are affected by our MS know that we’re doing our best to pull our weight, I think that can make their burden feel a little lighter. But it is a burden and there’s no getting away from it. I wish that life were easier. There’s a lot of grief when MS comes along, and it can take time and patience to process. I hope that you can find a way to help each other through.

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Thanks alison100, that’s very helpful. You are very insightful.
I like your approach. I will be more active, do what I can as a dad and acknowledge the mental anguish I sometimes cause my family. I’m happier when I can do more and I should use this time when I relatively able to spend time being with family.
And yes, it is tough but people really do have it worse and I am grateful we don’t. I feel very lucky to have the support I do and I will do whatever I can to help out.
Thanks again

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Hi there!

I’ve had PPMS for 25 years…i’m 70 hubby is 74.

I have 2 carers who do 30 hours and 2 nights between them. I am paraplegic and hoisted. I am doubly incontinent.

Hubby looks after me when they arent here. They do my personal care excpet for toiletting when I cant wait for them.

I’ve said many a time that I feel a burden to him. This isnt how we’d planned our retirement. He hates it when I say this.

It has turned him into a grumpy man, but we do love each other.

50 years of marriage has been up and down, but we’re still together.

When life gives you lemons, you make lemonade!
I am a Christian and this helps me immensely.


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Hi Sheggy & Mrs Sheggy,

I understand quite a bit about how you feel, my wife is now better at living in the moment and now able to think about herself rather than just being my support. In order for her to care for me in the long term she needs to consider her own situation. My MS has helped me to be a bit more stoical and I can share some of this with her. Negative feelings are totally reasonable provided they don’t overwhelm us.
Wishing you both all the very best.

I’m new to this forum and my husband has ms. He still works full time from home. I am not as supportive as I should be with him and get frustrated easily with him when I ask for help with what are simple tasks for me and then when he does try to help around the house it’s such an effort for him it’s difficult to watch/listen to I just itch to take over. How do you balance normal family life with actually remembering also how to take time for yourselves as a couple?