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Advice on being a carer

Hi guys,

Firstly, I would like to say a huge thank you to everyone who is a carer who helps someone with MS. It is hugely appreciated and you guys do a great job! It isn’t always easy but I hope at the end of it all, it is worth it for someone you love.

Now, I’m not sure if I should be posting on here as I’m not actually a carer - I have MS. But I wanted some advice on helping my boyfriend you helps me and was hoping that maybe you guys can offer some? (Really sorry if I shouldnt be posting here!).

My questions are:

How do you feel about the person you care for doing things themselves when you can see them struggling? Do you wish they would let you help?

Do you have support - a friend to talk about being a carer with/just someone else to help you? Or do you wish you had support yourself?

Do you talk to the person with MS in your life about any thoughts or fears you have in relation to their MS?

There is a bit of back story to why I’m asking so haven’t posted but if you feel you need to know in order to better answer then just let me know

Thank you so much in advance for responding!

:slight_smile:

Hi, Im sorry to see you received no replies. I am not the carer in our house either, but Id like to try to help answer some of your questions. I dont have MS anymore (wrongly dx`d with it, for 12 years!), but I do have a similarly disabling condition.

Q1, I do like to try to do things myself, but know some of my efforts will cause me a problem, so I ask for help there.

Q2. Hubby is a private person and I had to go behind his back to get help. 3 years down the line, he admits he cant do without this help now.

Q3, No he doesnt talk to me about his fears, as he thinks my mind is busy enough with what ifs. I wish he would.

Dunno if any of this helps, but I hope it has.

pollx

Dear Gorgeousred,

I have been looking after my wife full-time since her MS became SPMS ten years ago and she became bedbound. This is the first time I have communicated with anyone else with MS or carers, so please understand that my responses to your questions are unique to our situation, personalities and relationship and are uninformed by any learning from others with more experience.

At first when I saw my wife struggling to do things, I rushed to help, to try to remove the struggle altogether. Although she didn’t say, I sensed I might have been worsening her feelings of helplessness, I was always looking for and encouraging her to try new treatments, NHS or private. Mostly futile, as you’ll probably know. I can see now how clumsy and insensitive I was, getting all exasperated if she resisted using aids or lacked enthusiasm for another ‘treatment’. In time, I stopped all this desperate nonsense and now try only to reduce or minimise the struggle. Except for the things she can’t do at all, in which case I do these for her. As her ability to do everyday things fades, I now gradually fill the void. After so many years it becomes second nature and is now almost imperceptible to us both.

I have consciously not engaged with other carers because I didn’t want to define myself as a carer or my wife as cared for. We are husband and wife, I just happen to have to help her in ways I didn’t expect. We have a full-time employed carer who helps look after the house so I don’t have to worry about that and she looks after my wife for a few hours every day to let me do other things. She has been with us for twelve years and is the only person who really understands the dimensions of the disease; she shares the emotional load very helpfully. I am also very lucky to have the patient support of a very understanding and loving father and sister who let me vent my frustrations when ever I need to.

I have never talked to my wife about my fears, her capacity to have deep discussions about things was lost long before I mustered the courage, or acknowledged the need, to talk about any of the ‘what ifs’ of MS. I also find that it’s better for our mental wellbeing not to make too much of a deal of MS or its devastating effects (actual or potential) and instead to just manage the consequences if and when they arise and make the most of life in the meantime. Despite the extent of her disability, my wife enjoys a relatively good quality of life but in a completely different way than when she was able to be active, this is possible (for us) only by keeping a light-hearted outlook. I encouraged my wife to grant me (and her closest friend, in case anything happens to me) full Powers of Attorney shortly after she became unable to write or sign her name or to communicate properly. I hope I know her wishes (I think so as I seem to be enacting them) but I wish we’d talked more thoroughly about things when it was easier to do so (although for me there never seemed an easy time for that) just in case. I recommend you get this of the way now, if you can, but hope you’ll never be ill enough to invoke the PoA.

I hope this helps in some way and send my best wishes to you and your boyfriend.

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