Need Someone who understands

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Sonny O
Need Someone who understands

My wife was diagnosed with MS 22 years ago, before we met. She told me about it before we really started to date seriously but I had already fallen in love with her so it was not an issue for me. Although I knew a lot about MS, I was not prepared for how rapidly it could progress. Just 4 years into our marriage, everything changed. She became disabled by it and could no longer work. I make a good living so money was not an issue. However other changes started to occur, the mood swings, the memory loss, the complete loss of physical lovemaking, the depression over her inability to do what she used to do, the arguments about my work schedule. In fairness to my work, I do work hard but am not out of the house for 10 or 12 hrs a day. I leave by 9 am and return home by 5 pm so I can make dinner for us and then the dogs. My job requires that I am available to clients by phone or computer until 9 pm but I am home when and if that occurs. We no longer vacation the way we did, 7 of the last 10 years, we had to cancel at the last minute because she was not doing well. Recently she has started to fill her daily boredom with catalog shopping and this has caused some issues because she buys stuff we just do not need. Her abilities continue to go downhill and her mood with them. The long and short of it is that I feel lost at times. I have given up everything that I or we would or used to do..I feel like a prisoner in my own home. There is no one else to help me. My family is hundreds of miles away and her family does not care, her mother lives with us and is absolutely worthless, she does nothing. I will care for her for the rest of my life and will never abandon her but I have been a caregiver for 15 years now and I just feel like I am at my wits end. Thanks for letting me vent and I would appreciate any feedback.



I have a pretty good idea where you are, my friend. My husband had MS when I met him. I fell in love, and thought I was prepared to deal with whatever came our way. Because we would work together, and find opportunities to carve out a meaningful life...

All of that has changed, and I too have been a caregiver for him for 15 years. In truth, I was prepared for the physical degeneration but not even remotely aware of the cognitive losses he would suffer as a result of multiple sclerosis. He has damage in the temporal and frontal lobes of his brain, and his behaviors mirror someone with frontotemporal dementia.

At this point in time, I am still working full-time and raising four boys on my own. I did all I could to keep my husband at home, until last year it became extremely unsafe, due to his decline in judgement as well as his impulsivity. We transitioned him to a local long-term care facility earlier this year, and we are still working to adjust to this "new normal". It has been a very difficult journey for all of us.

I had limited support from my family, and absolutely no support from his. I am one person and I am doing the best I can. But a big part of this journey has been recognizing my limitations and setting some healthier boundaries. It is a painful process, but necessary.

Make sure that you are able to have "you" time, both by yourself and out with friends - time when you don't have to be "on duty". And love is a two-way street...I do hope you are able to talk with your wife and find ways that she can help you help her.

Best wishes to you, and thanks for posting.

Gaby is a seasoned caregiver.

Gaby is a seasoned caregiver. The two of us are a few "leftovers" from the former forum for NFCA (Natioal Family Caregiver Association).

Here is a link for caregivers. Read it; print it out & post it; take the commitments to heart.

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