Recently, I have been writing about caregiving wisdom. I have gained this wisdom the hard way. Caregivers gathered at a recent Conversations with Kelly event on Wednesday, August 9, 2017. The theme was “Lean on Me. Caring for the Caregiver”. If you live in the Twin Cities area, and you are walking through a cancer diagnosis (either your own or that of a loved one) I highly recommend attending one of the quarterly CWK forums. To learn more, you can visit her website. I also recommend reading this great article from the Minneapolis Star and Tribune, highlighting her work.
I learned so much from Kelly and four amazing caregivers who spoke about the difficulties and joys of being a caregiver. There were a few nuggets of caregiving wisdom that I thought I would share in this post.
Nugget of Caregiving Wisdom #1 Looks can be deceiving.
Both caregivers and patients can keep it together in public, only to fall into bed, exhausted, once they get home. One patient said that people often were amazed at how good she looked, considering she was undergoing treatment for breast cancer. She said, “I wish I felt as good on the inside as I look on the outside.” You can’t control how others see and respond to your situation. That’s okay. But make sure that you don’t compare yourself to how you think you should be doing. Things like housework, yard work, and hitting the gym will have to take a back seat, so ditch the guilt. Those things mean nothing when someone is dying.
Nugget of Caregiving Wisdom #2 Work as a team.
Friends, family, doctors, the caregivers, and the patient are a team. Don’t feel like you have to, or should be able, to do it all. No one was meant to take on that load. There will also be times when you are able to do more and times when you have to do less. During those times when you are getting worn down, rely on your team. Utilize the tools available to you like Caring Bridge. This can help you bridge to your community.
Nugget of Caregiving Wisdom #3 Relationships will change throughout the caregiving journey.
Some of the changes will be negative. Illness will change the life of the patient and the caregiver as well as those who love them. There’s a lot of grief over what once was, but is no more—even if you end up in a good place.
There are also positive changes. Often relationships are strengthened as people reassess their priorities. You find out who really cares by their response to what you are going through. Spousal relationships no longer sway to flippantly considering splitting up.
Nugget of Caregiving Wisdom #4 YOU will change throughout the caregiving journey.
A few of the great quotes I heard from caregivers on the panel were:
- “Wisdom is healed pain.”
- “The dying can teach us how to live.”
- “It’s a tougher life, but it’s a bigger life.”
Nugget of Caregiving Wisdom #5 There’s no perfect picture of a caregiver.
There is no right or wrong way to do it. Age, diagnosis, prognosis, and support system, all make each case different. A caregiver isn’t just a warm body. They offer spiritual, emotional, financial and physical care. How this looks will be different for every patient.
There’s a lot you can’t do for the patient, but you can be present. Listen to hear, rather than to respond. Do this and you’ll get all the information you need.
Nugget of Caregiving Wisdom # 6 Anticipatory Grace
Fear is a very real, very intense part of caregiving. Fear of:
- Not doing well enough
- Scan results
- Treatment side effects
- Financial future
- The kids’ well being
- “Devastating information” we get from the doctor (or Dr. Google)
- The death experience
You want to hold on tighter to what you could lose. Learn to release so that you don’t miss out on the beauty. Take life one minute at a time rather than going down the rat hole looking for the worst.
I have plenty more nuggets of caregiving wisdom to talk about in future posts. Until then…
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I am an author, writer, and speaker and homeschooling mom of 3. Since my husband, Dan was diagnosed with stage IV lung cancer in 2012, I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness.
My goal is to help people face cancer with grace.
My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com