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joyces (@joyces)

Major Changes as Spouses Age

Aging Well | Last Active: Oct 23, 2020 | Replies (51)

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Hi @joyces I know you asked for women's responses on this, but thought I'd chime in anyway ­čÖé I'm Scott and I was my wife's caregiver during her war with brain cancer. I quickly learned three things: caregiving is an intense grind; the disease our loved one is fighting can easily take over their prior personality, emotional stability, etc.; and once chronic disease attacks a loved one, life is never even for both parties nor what we want, hoped for, or planned.

I know each patient, life, disease, etc. is unique, so all I can do is share what I experienced, saw, etc. First when my dad began to decline I saw my mom badger him endlessly to do all the things he used to be able to do. He simply couldn't, nor was he able (psychologically) to explain his feelings, verbalize how he felt about his new limits, etc. Second I saw how difficult it was for my wife to come to terms with her limitations/changes from her cancer. Many were physical, but many were inexplicable mental ones such as suddenly not liking many of the interests and activities she used to enjoy, even to forgoing certain foods that had been lifelong favorites. I then saw our 42 year old son suffer a serious heart attack. He is physically recovered, but the psychological toll it is taking continues and is far more challenging for him! There are things, simple things, he is still too afraid to do post-attack.

Personally I suffered a stroke and lost my sight and hearing on one side. While the doctors told me there were lots of things I could get back to doing, it took me months longer to do some and I still will not do certain of them. My best friend simply doesn't understand why I would 'limit myself' when I refuse to do certain things that I used to do, but I simply can't!

I believe many times when we have life-altering or chronic health issues we feel fragile. Often times it is short lived, but sometimes the effects on us last far longer, become ingrained, while some are simply impossible to overcome/ignore. I think it may be some level of depression, but I'm certainly not a medical professional of any kind so that is just my view from the feelings I personally have over my own health issues. The human mind is so incredibly complex!

How old is your husband, if I may ask?

Strength, courage, and peace

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Replies to "Hi @joyces I know you asked for women's responses on this, but thought I'd chime in..."

Reply to Scott, Vol. Mentor: My husband is five years younger, now 73. We went through the big life changing event a couple of years before we were married, when he was diagnosed as diabetic…and turned out to be very brittle (blood sugar levels often have little relationship to logical things like food and exercise vs. insulin taken. Our primary doc at the time kept impressing on both of us that we could live normal lives in spite of the disease, and, for years, we did.

He current level of helplessness was brought on when he announced he had retired and therefore would do nothing because he had "earned" it. He's been shown at various times that doing any sort of exercise quickly reduces his lower back pain, but he refuses to admit that's the case. He was able to work full time, fish weekends, even add three evenings a week of dialysis to his routine before his transplant, but the transplant, instead of meaning he was free from dialysis and a very strict diet, meant that he spends all day reclining or lying down with no exercise, which increases the back pain. He's been told by several docs that he needs to move to reduce the pain, but he flat refuses.

At the same time, I've lived with the limitations of Meniere's for nearly 40 years without allowing it to take over my life. At 77 (won't be 78 for over a month) I hike in difficult terrain as a volunteer data collection person for our state fish & game agency. Although I have zero normal balance function, I do vestibular rehab every day to maintain my ability to move about. Some of the instream surveys I do are a challenge to far younger people; we've hung ropes at various extremely steep places to aid us in covering our basic surveys. I might have "wussed out" when I first had serious problems with Meniere's, but my son had set an excellent example when he had a disc in his back deteriorate when he was only 16: although told that he basically couldn't do anything because the problem would spread up and down his spine, he asked for back exercises, does them daily (he's now 56), does some active exercise every day, and keeps his weight in check. He was originally told that he'd wind up in a chair, but he continues to hike, play softball and basketball, care for the acre he lives on. It is possible to decide how well you want to live when you have a chronic problem, whether or not you're going to allow it to run your life. When I was initially diagnosed, the doc told me to "quit your silly job, stay in bed, and take Valium." Fortunately, I didn't do that so am now far more active than my contemporaries–"in spite of" the disease.

Again, the pain levels of my husband's disease are actually lessened when he can be beaten into moving. His problem is far different than something that can't be made better or a disease that is progressively worse regardless of what you can do.