Tell Us: What's the Difference You Live With?


Tell Us: What's the Difference You Live With?

I think we all want to feel like we belong.

And that can mean we don't like to feel different, either from our family members, our neighbors, our co-workers, our friends.

A life of caregiving can be a life that's different than others live. It's hard to be spontaneous. It's also hard to make plans. Others keep their smart phone handy to take selfies; you keep yours close so you can immediately answer the crisis call.

I wonder: What's the toughest difference you live with? When do you feel different from others in your life? When do you dread the difference? When do you feel grateful for the difference?

In our comments section, below, tell us about the difference caregiving adds to your life.

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S.E. Olson

I guess the hardest difference was watching my father who was so fluent in a second language (German) that when he served as the president of a German-American Men's Club, all the German members swore he was German and not a guy from the South Side of Chicago. Getting a fronto-temporal dementia which was a very language & communication based variant of dementia and watching Dad lose not only his second language but his first was both sad and scary to me plus it meant that I couldn't communicate with Dad by just having a conversation. I get a lot from my father and frankly at first it scared the bejeezus out of me to know that there's a disease that can rob you of the 'intelligence' my family so highly prized.\r\n\r\nBut there were big wins for me in caregiving. I'm not scared of getting dementia anymore because the culture is changing, the treatments are changing, and there's so much to be learned and mastered. I've learned a lot and mastered a lot. I have a lot more to learn and master, but having faced it once, should I be unfortunate enough to get it myself, I know that there's life with dementia and it does have some pretty good moments. My values have changed and I think I am better for those changes. I'd rather be wise (which comes with experience and living) rather than just smart. I value people more and kindness and compassion in others inspires me to be more kind and compassionate. I feel rich even if I don't have a fat bank account or the high flying career I stopped pursuing to give care to my parents (both of whom have died). I appreciate different things now, I feel less childish and more like a real grown-up and frankly that's a great difference to live with.


I got another perspective on the difference for me from a book written by a British man that I've been reading: The disabilities of the person for whom we care become OUR disabilities. It's an especially crummy way of sharing, huh?\r\n\r\nIn my case, I was already disabled. Now, after 3 years, I have lost my ability to recover with any timeliness from even one night of poor sleep ... or from a stomach bug ... or from anything even slightly out of the ordinary on any given day. I drag myself around, trying to push through the brain fog and bone-deep exhaustion, knowing there isn't going to be any remedy until my mom passes.\r\n\r\nAnd I'm so much luckier than most: We can afford -- for now, anyway -- and have in-home assistance several afternoons a week. I got my brother to come into town to cover me in early December so I could get out of the house for several days and nights. Oh, that was heaven and then some! But I'd just about reached the very end of my coping rope before that happened. I was sick before I left, and sicker when I came back ... and haven't truly recovered since.\r\n\r\nI've also read more than once that caregiving almost always destroys one life in favor of another. Maybe that destruction can be reversed to some extent, but we never get the time back. Despite my mom's health issues, she could easily live another 10 years. If she does, I'll be much more disabled than ever, and 72 years old.\r\n\r\nI'd just embarked on one last try, an expensive and experimental try, to recover as much of my health as might be possible. The money I'd spent to-date on that goal ended up being a waste when I couldn't continue, though I tried to in the early weeks after my father died.\r\n\r\nMy mother, siblings, nor the few casual friends I have comprehend what this is doing to me. That's in part because I've always kept it to myself, been private, about how ill I am at times, how being pushed over and over again to function beyond my tolerance level costs me so terribly. I love my mother dearly, and I'm glad I can be with her during her last years ... I was the only child who was in a position to even attempt to become her live-in caregiver, despite my own health problems.\r\n\r\nI worry there will be a day, sooner than later, when I've relapsed so severely that I simply cannot get out of bed. Then what? I am working on several local back-up plans, but of course, my mother doesn't like any of them and works herself into an awful state when I try to discuss them with her. I guess she's in denial about just how real the threat is ... I don't have that luxury.\r\n\r\nI'm slowly but surely losing the person I used to be, and still want to be: Cheerful, optimistic, always able to find the bright side despite my own limitations. And I know I'm not alone.

Lillie Fuller

I guess mine would be that my friends are out doing things with \"friends\" and I am out doing things with Mom. They go to the movies, I go to the Lab! :)


We cannot be the involved grandparents we wanted to be and stared out to be.