When Friends Just Don't Get It

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Last updated: May 19, 2010
お疲れサマー! Bye-bye summer!
Image by "KIUKO" used under the creative commons attribution no derivs license.

Do your friends “get” what you’re doing? Not really? Not so much? Not surprising.

The hard truth is that it’s difficult for people to comprehend day-to-day caregiving -- its demands, its tedium, its challenges, its hungry, 16-armed-octopus-consuming-your-free-time nature. Even if they’re loyal, longlasting friends.

Not unless they’ve been there, too.

Gary Joseph LeBlanc, a book dealer in Spring Hill, Florida, knows this well. He cared for his father, Joseph, from his early memory loss to his death of Alzheimer’s disease a decade later. “The average person doesn’t have a notion as to what you’re going through,” he says. “Your phone rings less and less because you’ve had to decline time and again because it’s hard to get away. And when you do see old friends, they don’t seem to know what to say anymore.”

This incredible shrinking social circle smacks a double whammy: Not only does spending less time socializing deprive you of a stress buffer when you need it most, but social isolation is a risk factor for dementia.(Maybe you saw the news last week that [if your spouse gets Alzheimer’s, you might, too] (http://www.caring.com/news/if-your-spouse-gets-alzheimers-you-might-too) -- at least, you face a six-times-higher risk. Researchers don’t know if it’s because of shared environment, like diet or exercise levels...or because of caregiving-related factors, like stress and, well, isolation.)

What helps?

Expressing yourself.

LeBlanc began writing about his experiences with his dad for Hernando Today, part of the Tampa Tribune, which now also runs his column. (I wrote about his column on [Alzheimer’s phone problems[ (http://www.caring.com/blogs/caring-currents/alzheimers-phone-problems last year.) His new book [Staying Afloat in a Sea of Forgetfulness: Common Sense Caregiving] (http://www.stayingafloatbook.com/) is a collection of those columns -- and it’s full of those useful insights on dementia care that only someone who’s “been there” knows.


“No doubt writing saved my sanity while caring for my dad -- you have to save some part of the day for yourself,” he told me. And the social nature of a newspaper column read by many helped connect him with like minds.

I’m not saying every caregiver should become a columnist, but every caregiver can create a new discussion thread on an online forum, say, or collect the e-mail address of a fellow caregiver met at a support group or lecture you’ve managed to steal away to, for more talk later. Reach out.

Seizing the invitations you do get.

It’s easy to fall into the habit of deferring outings because, after all, it is hard to get away. And you might not be in the mood to hang with people who don’t really get what your life is like these days. But going anyway to that party you don’t feel up for pays off. LeBlanc calls socializing a necessary “interruption from all the depression and strain (of caregiving).”

Inviting friends to visit you.

Caregiving doesn’t lend itself to big hosting duties, but simpler gatherings (even if it’s just a cup of tea, a glass of wine, or take-out) can be manageable. One-on-ones are rewarding even if you’re caring for someone who has dementia. (Larger parties can stress you both.) If you reach out, you might help demystify your life for them.

Lowering your expectations.

It can be awkward when friends say things like, "Why do you have to do that all the time?" It hurts to be accused of not being “fun anymore.” Cherish the ones who lend an ear. Don’t worry about the ones who slip away. Maybe they’re just “on hold” for you now.

Instead, stay open to unexpected new friendships you might discover through your caring: A colleague in the same boat (revealing a side you never knew about her). A neighbor who’s also a hands-on caregiver. A sibling, seen in a new light and brought closer through this hardship. A new friend online.

I’m not suggesting these substitutes are as good as old times. But they’re something -- a something you deserve and need.

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6 Comments So Far. Add Your Wisdom.

over 1 year ago

McHuggs -- caregiver support groups are run by all sorts of different organizations, from hospitals and places of worship to the Alzheimer's Association. A local area agency on aging might be able to direct you to one (check the Caring directory: www.caring.com/local). They're helpful because you meet other people going through things like you are but yes, it can be hard to get out to meetings. But being part of this site can be a little like a support group, too. You're right about it being important to Vent!!


over 1 year ago

Hi: I love your article. I can relate because my circle of friends is very small, (my dad, sister and her family that's it...) I also suffer from depression, loneliness anxiety and ADD among others. When I have something scheduled, (like a doctor's appointment for my dad) I can plan ahead. However, on a day when nothing is planned, and I can't leave him because there's no one around, it can be a nightmare for me. My therapist recommended this site for me. I have been cautious and hesitant to join. I am glad I did. What is a caregiver support group? Most of the time I feel alone and have no one to talk to. My sister doesn't "get it." There are many other problems surrounding my ailments. I am not sure if you can provide any help however, thanks for listening to me vent. Kudos. George :)


over 1 year ago

I can relate a little. I have been a care giver for my Dad since last May 2009, he went through short term rehab, in NH, then another short term rehab in our town Nursing Home, we had contractors build him a new bathroom and shower so he would be more comfortable staying at home. Mostly 24/7 365 days a year. I do send him to Adult Day Health Canter twice a week for 6 hours each time, so I can do errands and shop for groceries. At my age, twice divorced, and seeing my mom slowly die from cancer, it's been rough. The biggest thing is the loneliness from lack of friendships except on the Internet. No one visits except my sister and her family. She doesn't stay long but it's nice that she does. He's a miracle at 89 years young. George :)


Anonymous said over 1 year ago

Have been 24-7-365 with few breaks for 15 years. Staying sane with a difficult combination of stroke symptoms and increasing Parkinson's symptoms nearly ruined my health until I got more "selfish" and followed the good advise I had been given but was too proud to take I decided that NOW is all we have after 53 year of marriage, and I had better start looking after myself a bit or he would lose his caregiver. I volunteer in a socially invigorating not-to-physical position and the contacts I make are stimulating and amusing which gives me strength. I have stopped saving for the future and am spending what is necessary to enjoy the present. If I get Alzheimers, my kids will take care of me !!


over 1 year ago

Once in my caregiver support group, we discussed positive things about caregiving. After venting about all the difficult things, I came up with something relevant to this discussion. Yes, many "friends" abandoned us, unable to feel comfortable with my Alzheimer's husband. But, other friendships grew stronger, and new friends have come to the front. Friends changed their schedules and went out of their way to include us. I have never felt such support and love from these friends and I am thankful that at least, for me, something positive did emerge in what is a very difficult caregiving situation.


over 1 year ago

The article is very true and pretty much describes my life as a caregiver. Not much fun and definitely not what I had in my plans for my later years.


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