Eric's wedding
Five Family Caregivers Now

As I’ve been preparing this website to “go live,” I’ve thought a lot about my lifetime of family caregiving.  In crafting the webpages and preparing the stories and background materials, many memories returned of all the years of caregiving I experienced.  In going through the possible representative pictures for this blog, I thought this one most appropriate for the theme, “A Lifetime of Family Caregiving.” Why is it such a good fit?  I served as a caregiver in some capacity to four of those family members during my lifetime, and currently, five of them, including myself, function as caregivers today.

Caregiving Life Began in My Thirties

When I became a family caregiver in my early thirties, I had no idea I would spend my lifetime caregiving or even that I was caregiving then. I only knew my daughter needed help, and I would do everything in my power to give her what she needed. The fact that as a caregiver, I “begot” a caregiver doesn’t surprise me at all. She grew up learning the trade.

Like Mother Like Daughter

I’m sorry that her child has special needs, but her skill as a caregiver is far superior to mine. While I was her role model along the way, she learned what I had to offer, and took it to new heights in developing those skills. She’s awesome, and I’m not the only one who says so.

Caregivers Never Get A Break

Being a family caregiver is a tough job. It’s physically exhausting and mentally challenging work that doesn’t stop twenty-four hours a day, seven days a week, fifty-two weeks a year. Caregivers never take a break because even when they are not physically present, mentally, they do not let go of their responsibilities. Relaxation is extremely difficult for a lifetime family caregiver because being “on” and ready to respond in an instant is a part of their innermost being. They do not have an off switch.

Never Mentally Stop Caregiving

Remember the song lyrics, “no mountain high enough, no valley low enough, to take me away from you?”  I don’t remember the real name of that song but it could be the caregiver’s theme song.  There is nowhere far enough away we can go that our minds will leave the location where we left the one under our care and join us at that distant place. A part of us is always left behind.

Back-up Care Needs are Complex

It is complicated for us to leave home and leave “our person” behind. Many caregivers don’t have someone in their lives to whom they can completely entrust the reins of control to leave in the first place, but even if they do, the preparation to leave takes so much work that it hardly seems worth it to go most of the time.  For me to go away overnight takes a week of preparation time—I’m serious—and the two days before, I’m up almost twenty-four hours straight getting ready.

Respite Care Needs to be   LONG Enough to Matter

Well-meaning mental health and social work professionals frequently talk about the benefits of respite and how even 15 minutes of respite can make such a healthy difference. I’m sure a 15-minute break is better than no break at all, but I personally don’t get much recharge from 15-minutes. Just saying.

 God is in Control

For me, I find most of my recharging comes from time with my family and finding peace with what I’m doing. I know that God’s in control of our situation, and I can count on him to help me through whatever happens. We get through whatever crisis occurs together. When I need strength, I ask God to give me what I need, and he always does.

Family Has My Back

I contact family and friends to gather around me here on Earth for physical comfort, too. My children are great for coming to our aid in a pinch. Of our four children, three of them have caregiving needs which make helping us a challenge at times.  The other one works long hours and has physical problems in his life as well. Of our nine grandchildren, seven of them have special care needs due to medical conditions making it difficult for their parents to leave them with just anyone to come to our rescue in the event I need to leave Lynn and getaway.

Alternate Care Solutions Difficult to Find

Finding an alternate caregiver for Lynn is not a simple matter. He has primary progressive MS and is a quadriplegic with full sensation but limited function.  He needs assistance with all activities of daily living.  I can’t call a neighbor or friend to stay with him for hours without orientation first because feeding him or emptying his urinal requires some training initially for his safety and comfort.

Grandchildren Learning to Be Caregivers

As our grandchildren grow up, each of them is learning to become caregivers. Our oldest grandson who is fourteen regularly helps Lynn with his writing and stays with him when I am only gone a few hours. Living with disabilities is part of their lives and they adapted early to practice accepting differences and helping those who have special needs fit into the healthy world.  For example:

The eleven-year-old awakened in the middle of the night to find her sister’s shirt soaked in blood.  She didn’t panic.  Instead, she helped her sister remove her blood-soaked shirt, apply pressure where the external central line catheter split, and then went to awaken her parents, saying, “Allie is bleeding,” without being the least bit hysterical. For her, it was just her sister needing help. She’s a caregiver at the age of eleven.

Experience = Empathy

My years of caregiving allow me to empathize with most people who become caregivers in any number of situations. Within our family, we have had multiple types of caregiving experiences and circumstances, and through those diverse exposures, I realize that not one style fits all. What makes one situation feel better today may not work tomorrow, and how I help you now may backfire for you next week, but the good news is that there are more ways to try, and there’s hope with each new option.

Concerned for the Future

I admit I struggle with the idea of lifelong family caregiving. It concerns me. I’ve spent a lifetime being a family caregiver, and I look ahead and know that as long as my husband is alive, I’ll need to be a caregiver. However, I’m not sure that I can last that long. My body is giving out, and I’m only 62. My medical issues are worse all the time.  I need surgery that I can’t have because lifting would ruin the repair.  I’m trying to last long enough to outlive Lynn and keep him out of a facility while I’m alive.  If I outlive him, I’ll go into assisted living using the Long-Term Care Insurance I’ve purchased so they won’t need to add me to their list of caregiving duties. I just hope I can last long enough to finish out this mission of caring for Lynn as long as I’m needed. However, this I know, God’s got this…whatever this is.

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