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A Caregiver’s Thoughts

As a caregiver for my wife who was diagnosed with MS in 1988, I would like to express my appreciation to all of you who have contributed your stories. Your unflinching truthfulness has helped me understand my wife’s struggles to a much greater degree, and has thus been a source of encouragement.

Since this is my first story I would like to briefly share our journey of the last 30 years. With her first diagnosis, we mutually decided to opt out of any drug therapy and to educate ourselves on healthy diet, vitamin and herbal supplements, and the wide scope of alternative medicine. Additionally, at the time of her diagnosis we were in full-time ministry and pastoring a small church. It was quite natural for us to seek the Lord for healing and, more importantly, wisdom on what to do.

For the first fifteen years many symptoms would come and go. However, life was fairly normal as we adjusted to the erratic nature of this disease. But the last fifteen years have been more stressful. I needed to resign from full-time ministry as my wife’s personality began to change in negative ways, and she simply could not keep up with the demands of this type of work. This brought a lot of stress into our lives and marriage, but we learned to adjust and keep loving each other. The last ten years kept her attached to a walker and could no longer drive.

This last year has been much more difficult than all the previous twenty-nine years. Her memory and cognitive issues having greatly increased to the point of having symptoms very similar to when my mother was dealing with dementia. At times she is barely able to get around in our two-bedroom handicap apartment. Any trip outside of the house is becoming much more frequent in a transport chair. Because of these problems she confines herself more and more to staying at home. I understand why, as her home and all the familiarity of it is security for her.

That’s why I want to say thank you for your stories. The sharing of your struggles and victories helps me to deal with my wife’s issues with greater patience and understanding.

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Comments

  • MarcieKim
    2 years ago

    Thanks for sharing this. My husband was dx in 1999 and has experienced a similar trajectory – although the physical progression took a step change 18 months ago with a UTI that became septic. He’s confined to a power chair. Like you, I have found the dementia hardest to deal with in my spouse. It’s so poorly understood by the medical community much less among our family and friends. Sorry you’re dealing with this too. I’ve found comfort in the openness of bloggers who talk about their cognitive impairment. The medical community will catch up. I’m just tired of the over-attention on walking (or not) and fatigue mixed with minimization of the myriad worse complications of this disease.

  • teddy s.
    2 years ago

    Hi BransonJohn,

    Your story certainly evoked many memories for me. I have posted many details of my caregiver journey in the caregivers forum. My fiancee of 11 years passed away three months ago after a week in intensive care followed by a week in hospice care. She was in the end stages of MS, and died from MS related respiratory failure. I hope I can be of help to you.

    If you are not already familiar with it, search for the Kurtzke Disabilty Status Scale. It lays out the progressive physical disabilities associated with MS. It will be very informative for those new to MS, as well as those all together too familiar with it.

    It does not, however, prepare you for the progressive mental regression of MS. This is one of the final symptoms of progressive MS, and, for caregivers, the most difficult to deal with.

    For all of the difficulties related to the progressing physical decline, they are easy compared to dealing with the changes due to MS related dementia. The overall mental disposition of your loved one is what formed your initial intimate connection, it is what defines them in your heart and your soul. When the dementia sets in, the person you fell in love with fades away. But your love for her will still remain strong, and will define the love that still remains. Don’t pass up the opportunity, the emotional bonding between the loving caregiver and the charge will lead to a level of intimacy that few will ever experience. I am several months removed from the caregiver experience, but it is something, in retrospect, I can truly say was a life changing experience, and I wouldn’t have missed it for the world.

    Good luck to you, I wish you the best.

  • BransonJohn author
    2 years ago

    Teddy,
    Thanks for your message. You’re so right about the MS dementia being the most difficult to handle. However your insight was very encouraging in helping me to stay focused on what’s really important today.
    I really don’t want to dwell too long on what might be down the road in a few years but I did find the Kurtzke scale informative. I’ve never heard of that before.
    I’ll be looking for your posts in the forum asI’m sure they will be helpful for me. I’m still learning my way around everything this website has to offer.
    Blessings to you!
    BransonJohn

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