New here, would appreciate advice

Caring for someone with MS
1

Hello everyone

Let me start by saying I am new here. My partner was diagnosed with RRMS in July of last year, although her unofficial diagnosis was almost a year before that. She had already gone through her grief and anger phases while coming to terms with her illness, or so I had thought. I’m not sure whether it’s the illness itself or her way of coping with it, but for nearly two months she has been a different person to the woman I loved.

She is overly emotional ( which I can understand and cope with ) but also highly aggressive ( which I do not understand and cannot cope with ). I feel as though I can’t even talk to her anymore without an eruption of anger or tears. I do everything for her that I possibly can while at the same time working a part time job I hate and it seems that nothing is ever good enough any more. I’m not sure what I expect to get from this post, but it already feels a little better just finally opening up about what we’re both going through.

I guess my question is whether any other carers or sufferers have seen or gone through what seems to be a complete personality change, and if so, whether it is a temporary change or a permanent one. I am pinning all my hopes on it being temporary so that one day I’ll get my Kate back ( it is just the behavioural side I can’t deal with, not the physical ), because if it is permanent I honestly can’t see myself staying. Already past the end of my tether.

Anyway, sorry for rambling. Thank you for reading and any replies would be very welcome.

Dan

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Hi Dan, I am the poorly one in our house and my hubby has been my full time carer for around 16 years.

When something as mammoth as a serious neurological condition smashes it`s way into your lives, it can hit both partners like a demolition ball! That might sound over dramatic to the outsider, but both you and I and countless others, know it is exactly what happens!

I dont think I had a personality change…not as such…and I doubt your lady has had that happen either really…she just doesnt know which way is up somedays. And as the saying, or song, goes, You always hurt the one you love etc…

How much are you actually doing for her? Does she need help with her personal care? her meals? her outings?

If she is dependent on you for most or all of those things (as I am), then what about doing what I did?

For years, as my condition progressed rapidly, I saw the toll it was taking on my poor husband. he has RA and it can be a nasty brute at times. I kept saying how it would help if I got outside carers. He refused adamantly, saying it was his job and his alone to look after me.

But I had to go behind his back and organise some help. At first he was uncomfortable with a stranger coming into our house. But he soon began to see the difference it made to my moods. This rubbed off on him and now, going on for 3 years later, he wouldnt be without my carers to help him. We even have one carer stay overnight, once a week, to ensure he gets a good nights sleep upstairs.

I think your lady could do with some counselling, or maybe someone to take her out now and then. This would give you both a break.

What do you reckon, eh?

Guess I`d bettet shut up now!

luv Pollx

3

Thank you for replying, and also to those that have sent me private messages. Your support really means a lot. After struggling in silence for what seems like forever it is nice to have people who actually know what they are talking about.

Some things I missed from my first post. I am 25, my partner 29. We had been together for only eight months before her health problems began. She suffered first from a prolapsed disc which meant she had to stop working as a florist. While examining this problem she was sent for an MRI scan which showed evidence of lesions. At this time she was experiencing numbness and what we now know is MS was interfering with her back problems rendering her bed bound for a very long time. She moved to my area to live with me and her family is scattered around the country. To be honest they haven’t been helpful at all with her condition and neither have my own family. She went through a very aggressive phase shortly before the official diagnosis, even attempting self harm several times.

Eventually the doctors saw there was a problem and she has been receiving counselling ever since on a regular basis. She has a history of depression and has been on anti depressants for many years. She has no friends in the area ( due to getting very ill shortly after moving here ) and she has taken all of her frustrations out on me verbally and physically.

I help Kate walk since her balance is off. I drive her to all of her medical appointments and sit in with her on most. I sort out her medicine, her meals, our money. I sit with her through everything because she can’t concentrate on her own properly which causes her great distress. She doesn’t sleep properly, which means neither do I. Her memory is also acting up. After all this, she gets very angry at me for even wanting time to myself, however short.

Reading what I have written I realise I have just splurged a lot of pent up frustration of my own and for that I apologise. I have met people who care for a loved one with MS, both parents and partners alike. I have read a lot of what this forum has to offer before registering and in comparison to everyone else’s struggles my mere year and a bit of caring seems like a drop in the ocean. And yet I feel like I cannot continue with it. Things have come to a head and I am not sure what is going to happen next.

Thank you for letting me get all of that off my chest, and thank you for your kind words even though I don’t feel I deserve them.

Dan