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The Powerful Truth About What Family Caregivers Think

The Powerful Truth About What Family Caregivers Think

(and Don’t Always Say)

Are you a family caregiver? Do you know a family caregiver? Then this article is for you. If you ever wonder what family caregivers really think and don’t always say, read on! In this article, I’m sharing the 7 Powerful Truths About What Family Caregivers Think. You’ll get some tips on how you can really help caregivers through this stressful journey.

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1.  Hospital “outings” aren’t actually bad things for a caregiver.

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There, I said it! Don’t judge:-) Don’t get me wrong, we hate hospitals just like everybody else. But when a loved one is admitted for a few days, it can definitely feel like a mini-vacation for the family caregiver. Someone else ― someone who has actually been trained― is taking care of our loved one. Whether it’s a hospital, rehabilitation center, or another temporary place, it’s a great opportunity for caregiver respite.

We can have a patient free evening out with a friend or partner, cook a meal that I want without thinking of the salt, sugar and carb content. Oh, and I don’t have to clean dirty pants because of those middle of the night accidents or stubborn loved ones that don’t make it to the bathroom in time.  Hospital stays can be a huge relief for family caregivers. We still worry and, of course, visit, but there is also a huge sense of relief from our responsibilities.

It may not actually be a vacation on a beautiful island, it sure feels like it for the caregiver who is stressed out and overwhelmed.

Unless you’ve chased down a person with Dementia wandering the halls at night, changed an adult diaper or given up your job to care for a parent, you really can’t judge, can you?

2.  I am not trained enough (and certainly not paid enough)  for the vast responsibility of caring for another human being like this.

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The lack of caregiver training underscores serious shortcomings in the sort of informal long-term care that many rely on, an expert says. I was thrust into the caregiving role overnight and had ZERO training. The only training I received was from physical therapy when I shadowed them and watched what they did with my dad on days I could be present for his sessions. While it’s true that we aren’t given a manual when we bring babies home from the hospital, to expect us to know exactly how to take care of our elder/aging/ill loved one’s physical, emotional, spiritual and financial needs. It’s all too much.

“Caregivers are taken for granted, and they are invisible in the system,” Judy Feder, a professor of public policy at Georgetown University McCourt School of Public Policy, told the AP.  “It’s bad for them, it’s bad for care recipients, and it’s bad for the system.”

A poll was conducted online and via phone. Pollsters interviewed 1,004 people with experience in long-term care. Among the poll’s other findings:

  • Nearly half say it’s difficult to balance work and caregiving.
  • Men are more likely to have employers who are not supportive of their caregiving duties.
  • Eight percent say they have been sidelined from job-growth opportunities because of their caregiving responsibilities.
  • Alzheimer’s disease and other mental-health conditions are more stressful on caregivers than dealing with physical ailments.

I don’t want to be the “rock”.

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3. Don’t talk to me about how you had a sleepless night last night. Welcome to my world. It’s nice that you get uninterrupted sleep at all

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Don’t talk to me about not getting a good night’s sleep last night or complain about how your partner snores. If I could put my head on my pillow at a reasonable time, spend a few minutes meditating without falling asleep before completing the first sentence, I would be a more patient and happy person. What people don’t realize is that even when a caregiver goes to sleep, they are usually on call and listening for anything out of the ordinary. Depending on how secure the home is (think about someone trying to leave the home naked in the middle of the night), that one ear may be pretty active each night.

4. Few people know the right thing to say.

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“Give him my best,” is fine. And if you offer help, for the love of all things holy, please mean it. Make your offer specific. “Do you want me to drive your son to the school bus next week?” For the love of all things good, do NOT make broad offers and then proceed by telling me your oh-so busy schedule. This just turns me off and makes it clear this is an empty offer.

By all means, offer; but you better mean it. Tune in HERE to my Empowered Family Caregiver podcast episode 5  to get some specific tips on how to say the right thing and how to specifically help caregivers.

5. The only gifts we want are the gifts of your time.

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The one thing most caregivers really want is a break from caregiving. They want someone to take care of their loved one for an evening and let them go out to a movie. Caregivers worry about how someone else will handle the little things that can set someone off or help soothe them but they really need time away. Walk a mile in our shoes for a few hours. Gifts are great. Cards help but time is the real gift.

 

6. We don’t always want to deliver a play-by-play for every new development.

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People always asked me how my parents were doing. Depending on where I was, I sometimes chose not to answer. If I’ve managed to take time away to watch my son’s football game, I will thank you for asking and shift my eyes back to the field.  Most caregivers learn pretty quickly how to compartmentalize their lives.

Some caregivers I know use websites like Caring Bridge, where they post an update in one place that everyone can see and where concerned friends and relatives can leave messages.

I have a texting group of my closest friends. When I have news to report, I post it there. I also posted updates on Facebook.

7. Sometimes, though, I DO want to talk about my situation. I just don’t want to bring everyone else down or be judged.

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Sometimes, I did want to talk about what was going on with me but I didn’t want to bring other people down or be judged. Here are some tips to handle this situation.

Key tip: Asking how their loved one is doing LATELY? This gives the person permission to share the latest without going into old stuff.

Key tip: Ask how THEY are doing as the caregiver?

Key response: I’m so sorry you are going through this.


“Friendship is born at the moment when one person says to another, `What you too? I thought I was the only one.” – C.S. Lewis

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Listen in to my Empowered Family Caregiver podcast episode where we break these 7 thoughts down in more detail:

 

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