Giving You a Sigh of Relief


Giving You a Sigh of Relief

flower-729814_640(Editor's Note: This is the third blog post in a series called Imagine during which I explore what could be when the Centers for Disease Control and Prevent tracks family caregiver stress and its source.)

I've been mulling a few thoughts this past week:

First thought: After reading my book, Take Comfort, Reflections of Hope for Caregivers, a spouse made the difficult decision to place her husband in a nursing home. A former family caregiver told me this story a few years ago. She had given my book as a gift to a friend's mom who cared for her husband. I find this interesting because my book isn't about nursing home placement. I don't think I even mention those three words. It's a book about comforts for those who care. It's a book about understanding what your world is like for you right now. The reader of the book must have known in her heart that her caree needed more care than she could provide at home. What a heartbreaking and heart-wretching realization to come to terms with! It's also a situation that demands compassion and understanding and permission. The caregiving spouse received that, which melted her resistance and armed her with courage for that next difficult step.

Second thought: @Kaz has shared several updates on her profile about the difference in her life since becoming a member of our community:

"I just wanted to say that I’m so glad I joined caregiving. I didn’t think I needed to talk about these things and I had everything under control and life is life. I must say everyone had shown me a great comfort. I want to thank all of you for kindness and taking the time to chat with me."


"Most of you know that I’ve been caring for my husband Tony for the last 4 years and how I’ve thinking of rehab of nursing home for him. I thought all this time I was taking care of him was just normal and that’s what you must do for that person in your life …you know for better or worse. But since I joined caregiving I have learned so much …that this isn’t normal….giving up your life to take care of someone. I’ve had a lot of people tell me how great I was for taking care of Tony ….and I just thought they were being nice and trying to make me feel good. But here at caregiving you made realize that they were right. Well it still took a while but I finally realize it was a lot and it wasn’t until Tony fell 2 weeks ago that I’ve had enough. Well the time came and decision made ….go to hospital and to rehab because I can’t do it anymore …Tony had me worn out. So I just want to say thank you for everyone’s advise and making realize that I actually needed to do this .. To make the best decision for the both of us. It has only been 2 days and I can feel the stress easing up and now it’s just the stress of getting it done …but I now know there is hope at the end of this tunnel. So thankful I have met all of you…thank you …thank you ..thank you."

It may sound like we advocate for nursing home placement. We just advocate for what you believe is best for you and your situation. We believe in you and believe you know what's best. We give you permission to consider something that, when you're alone in this, seems just too awful. In essence, we make it okay for you to accept help.

When we're outside a community of support, we're lonely and isolated. We also may receive messages that lead us to believe we just must continue on our own. We may hear what a great daughter, son, husband, wife we are to do what we do--which sometimes we interrupt to believe we must continue on our own and that using outside services (like home health) means we are no longer that great daughter, son, husband or wife. We may hear "No, I only want you to help me" so much from our carees that we decide the only option is for us to give up more to give more. We may watch others, like family members and friends, disappear which can lead us to believe we're in this on our own, there is no help or support for us.

When we're inside a community of support, we speak freely about what's difficult and what challenges. We express our fears, our worries and stresses to others who say, "Yep, me, too." We develop relationships with others who stay the course with us, no matter what direction our course takes us. We hear others talk about the help they've found and received, which makes us think about our own possibility for help. (I'll address the problem of lack of help for family caregivers in our communities in my next "Imagine" blog post.)

The greatest obstacle, of course, for anyone in a caregiving situation to joining a community of support is actually finding that community of support to join.


What if...

A community of support actually went out to find anyone caring for a family member or friend.

What if that community of support introduced itself to family caregivers within the health care system. What if that community of support showed up every time that family caregiver landed in the health care system--whether because of a caree's emergency, treatment at an outpatient clinic or doctor's appointment. What if that community of support advertised itself in local libraries, post offices, grocery stores and pharmacies?

What if that community of support had only a simply mission--to check in with that family caregiver, to educate about resources and options, and to hear a family caregiver's story.

Because it's the power of being understood, of being accepted, of knowing you belong that leads to the courage to consider what we thought couldn't be considered. With that community of support, we can own our choices, our decisions, our experience in a way that brings us peace.

I truly believe we can show family caregivers in our community that they are understood, that they are accepted, that they belong. I believe it all starts with the Centers for Disease Control and Prevention tracking family caregiver stress and its source. It's the intervention we need to disrupt a lonely and isolated experience and bring on a family caregiver's huge sigh of relief.

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Lillie Fuller

Wow, that's a thinker for me.