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When it comes to ALS, there are so many “sensitive topics” that are difficult to approach. However, I hate the thought of anyone dealing with ALS stress alone, so lets start a conversation!
How has ALS impacted your relationships especially marriages or long-term committed couples? Are you now a caregiver or a care receiver? Was there some role reversals in your home with the diagnoses? Do you have advice or experiences you can share with others who are married or in a serious relationship that are also impacted by ALS?
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Hi Amanda (et al) I have some thots on your questions & information. I am “early” into this strange new part of life where I am slowly becoming limited in a few areas and am not yet actually diagnosed with ALS but it remains in the “running,” so I should not have much yet to offer here, but I do have a perspective which may be a bit unique. I am both, a caregiver & starting the journey of a care receiver. My husband of 54 yrs has been a high level (T-4-5) paraplegic for 57 years and altho mostly independent until 5 yrs ago, has become more dependent physically, requiring hoyer lift & electric chair, assist to turn etc. My “minor” limitations (zipping, buttoning, opening, cutting etc) have turned our tables a bit. I think my increasing need has allowed him a new sense of purpose & both of us a greater appreciation of each others understanding, help & opportunities to care. We are having to look more realistically into the future.
I had a brand new experience yesterday, that Ive not felt in our marriage before. I became so frustrated sitting in the drivers seat, waiting for the lift to finish bringing David into the van, attempting to place my hearing aid into my right ear with the right hand/fingers not doing what I needed them to do, speaking patience to myself, and finally reaching my limit,….I threw my hearing aides against the dash as hard as I could, then broke down into sobs. Such simple little things built up into an eruption which felt soooo needed. My husband, had compassion, I even had compassion and somehow we both shared in an unspoken understanding & acceptance & yes, love. Sounds so trivial but I feel stronger knowing we experienced it together and it was real. Hope this makes sense to others. Thanks!
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Nancy, my heart goes out to you, being a caregiver for so many years for your husband. You are a caring, dedicated person, and I can’t imagine how difficult it must be to continue taking care of what he needs, while you have your own difficulties now. My life as a caregiver hasn’t nearly been as challenging as yours. For over 30+ years, I was the primary caregiver for our 3 children who are mentally and physically disabled. My husband was the only one working, as my “job” was full time in itself. Our children are now 32, 32, and 30, and just 3 years ago they were placed in a medical home. It was such a great blessing, as I had begun to struggle physically to care for their significant and increasing needs. Thankfully, my health was generally good, and no sign of ALS back then. I am so very grateful every single day, that they are taken care of, and are safe. Being that I am now dependent completely on a walker or a wheelchair, and can no longer drive, I simply would not have been able to care for them, if my symptoms began back then. A very big part of me feels sad for my husband now, as he finally could feel life was a bit “normal”, not having to help with the caregiving, and now he is my caregiver. He has taken it so well, which I am incredibly grateful for. What is so helpful is that we are very used to having modifications in our home and limitations in every aspect of our daily life. I believe that our years of being caregivers to our children has helped us tremendously in our relationship now, as my abilities lessen. My husband just takes what I need in stride, and I know it isn’t easy for him as he still works full time. We both are thankful for what we went through during those years past, and since we are both so used to facing uncertainty, that it helps us stay close, despite this devastating diagnosis.
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