What can I do about friends who don't support my caregiving?


Q: How do I handle friends who are not supportive of my caregiving journey?

A: You've probably noticed how when you talk to some of your friends, who are not going through caregiving, how their eyes start to glaze over when you talk about your situation. Don't be offended--it seems to be universal. They want to be supportive, but they just can't for long periods of time, because they realize what you are describing is all ahead of them. For now, they aren't there yet, don't want to be, prefer denial--and it is just too unpleasant to listen to horror stories they can't fix. So, just limit your exposure to those people--and realize their caregiving days are probably coming too.

If I had to do it all again, I'd ask my top seven friends if they could handle calling me once a week, but on a specific day. That way, I'd know that the phone would ring at least once a day, instead of feeling alone without calls for days on end--and then seven calls in one day!

And if you're having a meltdown late at night and don't want to call and burden a friend, realize there are many online support groups, forums and chat rooms, where you can vent and vent and vent! Check out the forums here at Agingcare.com .

Writing about what you are going through will help tremendously to purge it out. Hey, the first draft of my book, Elder Rage, was 650 pages before I finished venting. So, even if it is 3:00 am, I guarantee there are frustrated wide-awake caregivers who are online and venting too. And, guess what? It's daylight on the other side of the globe--and I am pretty sure they have caregivers there too.

Jacqueline Marcell is a former television executive who was so compelled by caring for her elderly parents (both with early Alzheimer's not diagnosed for over a year) she wrote "Elder Rage." She is also an international speaker on elder care and host of the popular Internet radio program "Coping With Caregiving."

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You are right about people who don't understand - and just when you think somebody does, you get surprised by urban legends that really do caregivers a dis-service.

Today one of my neighbors caught up with me for a sidewalk visit and in the course of the conversation said he thought I "had it made" - believing that some magical government program is *paying me* to take care of my mom. Now I guess I should take it as a compliment that it appears I don't have a care in the world. My hair is brushed, I know what day it is and I am still coherent after having spent the morning cleaning up poop. I will admit, with technology you can work from home and take care of a parent, so i might appear that I am just sleeping in and doing my nails. But as a single woman who carrys the whole load, it frustrates me that there is this widespread belief out there -

it seems as if these mythical programs such as "paid" caregiving and tax credits only serve to salve the conscience of people who don't want to acknowledge that in our country we have very few programs that adequately address the issue. The few dollars that medicaid programs pay are less than a livable wage in an economy that has $4.50 per gal gas and skyrocketing prices...in housing, food, healthcare - you name it.

Since I am venting I'd like to say that by careing for my parent for free, the government saved $360,000 so far.....I wonder what would happen if EVERY caregiver in the US stood up at the same time and said the same thing. Would it get anyones' attention?

of course we as a group won't - because we are tired and busy....we do take care for our parents / spouses / loved ones because we care - we dont' want people's pity - we are strong and when it comes down to it what does money really matter when we have love and the feeling of having done something good

which is fine and dandy .....except we still deserve the RESPECT that comes with making this decision and performing multiple functions that a whole slew of professionals went to school to learn how do. Maybe we should be awarded honorary degrees - I sure feel as if I have earned my masters in dementia caregiving....

I hope that one day we all do stand up - a virtual million caregiver march that gets the same media coverage and attention of the general public that each celebrity du jour or sports team gets....

Thanks for listening - it reminds me of that old movie Network where everyone started yelling "I m mad as hell and I m not going to take it anymore"

thanks for listening - I feel better alreay - glad I can vent here.
2 things come to mind: First, you have to take PRIDE in what you're doing. Too many people look down on others taking care of an elderly parent who can't take care of themselves.

We've all seen the "big, dumb mama's boys" who've never married or moved out of the house and lived on their own. (and God help you if you're parent's a domineering jerk)

Many of us have given up our lives (job, school, money, respect, social life, dating, fill in the blank) to take care of a family member and it's too easy to lose morale.

We can talk ourselves down enough as it is! We don't need anyone else's miserable help!

Second, our need greater than their supply, so cut them some slack and get tough!

Let's face it, if one of our friends was in our shoes, we probably wouldn't be hanging around them either. Our burden is like a giant black hole that sucks everything and everyone into it that gets near it.

If you are lucky enough to have a friend or another family member that's willing to help, try not to lean on them too much lest they be as overwhelmed as you are. And don't whine and complain to them! Do it here!
When our family was caring for my mother-in-law who had Alizheimers, it was like pulling teeth to get her other two adult children to visit her. When the daughter came, all she did was scream at her and the son didn't bother at all. Now my husband has a different type of dementia and his family wants nothing to do with him. Thankfully we have close friends and my family who visit and help out. There is nothing you can do to get people to visit if they don't want to. I will usually call people when I want to talk to someone. I think most hold off on calling because they don't know if I'm busy tending to my husband. So, I call people a lot and set up outing for when my husband is in daycare.