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Relatively new caregiver looking for some friends :)

  • By Sarah H.

    Hi all-

    My name is Sarah. About a year ago, I became seriously involved with my partner Jess, who was diagnosed with relapsing-remitting MS in 2001. She (very fortunately) has had only mild progression of her condition and had been in full remission without daily medication for almost three years.

    Fast forward to a couple of months ago – Jess started heading towards relapse, and now is in full blown relapse to the point of no longer being able to work. Physically she’s pretty stable, but she is having a lot of cognitive symptoms that are really taking a toll on me and all of our family relationships (we have a three year old daughter). This is my first really concrete experience with MS, though I have known some other folks who dealt with the disease, and to be honest I am scared out of my mind….

    How do you cope with this on a daily basis? I love my partner and I want to care for her in the best way I can, but I feel like I’m wandering in a dark forest without a flashlight…I just keep running into trees. She has a new neurologist and I am struggling to find a local (or any) group of spouses who might be able to give me some insight into how we can still live our lives as a family without letting the disease conquer us all…

    Any insights would be appreciated. Cheers 🙂

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  • By Wordsgood

    Hi Sarah. I didn’t realize until just now that I didn’t actually belong to the site as I’ve been receiving their newsletter for months. Anyway, I’m a bit surprised no-one has replied to you yet so have asked my husband, Arohk, to connect with you.

    I was recently diagnosed with RRMS, though it’s suspected I’ve had it for many years. The cognitive issues are getting really tough for me as well and I know it drives him nuts at times too. He could also use the support. Please know that you are not alone, and even if you’re partner can’t sometimes show how much your help and love means to her, rest assured it means the world to her. MS is a funky disease that steals our bodies and minds in little bits and pieces, and sudden big changes are very hard to adjust to. I had to stop working years before I knew what was actually wrong and my life has steadily become smaller and smaller as I am unable to do more and more stuff that used to be a walk in the park for me. And the mood swings…..well I’m sure you know what I’m talking about! Add that to us being female with raging hormones already, and well, it can get a little choppy sometimes.

    If you’d like, I will also be here to support you as I’m able. Just let me know by posting back here.

    Hugs for you, your partner and your daughter!

    Wordsgood

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  • By Wordsgood

    And there’s another clue about my missing brain cells. I did not know you could PM people on this site!

    Thanks Dear. Am sticking my tongue out at you now………..

    Wordsgood

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  • By Donna

    Hi Sarah,

    I just joined this website. My husband and two of my three sons have MS. I would be happy to be your friend! My husband of 42 years has had MS for 26 years so I have been around this disease for quite a while.
    So if you could use another friend just say the word.

    I am known as dmhmdh53 or you can call me Donna 🙂

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  • By Anonymous

    Hey there. I just joined today. I know how you feel though sara. My mom has ms and has had it since 1984 which is six years before I was born. After her pregnancy with me in 90 she went into remission for almost 9 years. When I was younger I knew she was sick but I couldn’t see the effects so it was ok. My first major encounter with MS occured at age 9 when she collapsed as we were leaving church. After that she began a bunch of treatments including beta seron shots that I gave her in her leg. Then at 11 I came home from school and she wwas in the throes of endometriosis which was horrifying. Now after like twenty some odd years she has dementia and can move very little. I know this would’ve happened anyway but she gave up a long time ago. That’s the problem I have always had. She didn’t try didn’t listen to the doctors didn’t stay healthy. Make sure ur partner gets a lot of sleep drinks tons of water eats well and does all they can without over doing it. Its tough. Only the strong ppl are gonna be around but don’t give up and don’t let her slip away. My mom slipped away and trust me it happens before u know it.

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  • By debbie shaw

    Hi Sarah H. I am here for you, as my husband has MS. We have been dealing with it for 2 years. It is heart breaking for me to see him decline. He doesn’t have relapses, he is the same each day. Last couple of months he started falling a lot, so we got him a wheelchair and walker. We recently got him approved for a custom leg brace as his right foot was just dragging. We take it one day at a time. I have bad days too as, it is a big adjustment staying home to care for him. He is the love of my life, but sometimes I feel like his nurse and not wife. So my role has changed, but I love him to the moon and back. I am here for you.

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