Caregiving does things to you–as a caregiver, a family member.
It takes you places.
At first, you might start out caregiving heroically–feeling that you can make a difference. You can “fix” this problem–that your loved one’s condition can be bettered if you could just…get in there…find the right doctor, get on the right meds, coordinate the proper level of care…
It’s a tough day when you finally realize you can’t fix your loved one.
You can’t fix their disease.
You can do very little to make anything about this “better.”
You learn to just live, love, and hope to be granted some small level of grace.
You may feel as if you’ve lost them forever and this can cause you to grow bitter if you’re not careful. We don’t like not being in control, not getting results.
But what if one of the goals/purpose/benefits of your loved one getting ill, facing death is what it does to you, the caregiver? What if part of this is about you?
What caregiving does to you, asks of you, unearths in you?
I’m not trying to be Pollyanna here.
Sometimes it all feels useless. You didn’t sign up for a life lesson, and this is really shitty. Pardon my French, but I’ve been there, and I used far more “French” than that in my caregiving years!
If someone told me that I was supposed to get something out of caregiving, there would be some days that I would have definately thrown some heavy, possibly sharp object directly at that person’s head.
But as the target talking here, I’m going to duck and say it again:
What are you supposed to get out of this experience?
I can’t, I refuse to believe that caregiving is just this terrible, horrible thing that you have to endure because life’s just like that. Caregiving is so much more.
As much as it feels as if your loved one’s personality is gone–that you’re caring for a body, not your mom, remember they’re deep inside. When my mother started to lose her essence, I had to sort of go on auto-pilot. I had to care-give because of my commitment, my integrity (which I was groping and grasping to hold on to).
The difficulty lies in the fact of what we knew they once were–vivacious, intelligent, gifted people who made an impact on the world.
I was in a caregiver support group recently where a woman shared that her husband was a Yale Law professor, and now he can’t even dress himself. Her grief was palatable. She was holding onto who he was–what he did, what he presented to the world. She hadn’t let that part of him go yet.
Although you may only get glimpses of your loved one, hold onto the knowledge that they’re there. It becomes a treasure hunt. I began to seek out glimpses of my mother.
I started to notice smaller and smaller details: the way her hands moved, the way she’d brush her hair out of her face. That was still her. I didn’t use my hands like that–that was her own distinct way. As the bigger, more obvious ways of communicating diminished, it helped to pull in, and find my mother as if we were enjoying a game of hide and seek.
Some nugget, some kernel of their spirit is still inside.
Since the release of Mothering Mother, I’ve spoken to several thousand caregivers and their loved ones across the country. I’ve visited care facilities, and I’ve found that no two people are alike. No two people with Alzheimer’s react the same way. Even in their “lostness” is unique.
I knew I had to let go of who my mother was, and sadly, I knew I had turned her into a list: mother, wife, minister, cook.
I had to decide to love who my mother is: a person, a woman, the core of a spirit.
I read about a couple whose son had been in a motorcycle accident years before and was brain injured. He was still alive, but he wasn’t the son they knew before the accident.
They decided to hold a memorial service or celebration service–even though he had not passed away.
They needed to let go of the son they once had–in order to embrace their new son. This new son still needed to be loved, still needed parents, but as long as they were holding onto that old son/old image–it hurt too much.
This journey, this revelation changes them–and in the end, oftentimes makes them a better person capable of more love and peace than could have ever imagined.
You’re not really letting go of your loved one–of who they were, who they are–you’re enfolding that into you–you’re the keeper of time, of memory, of all you hold dear.
I love time theories and quantum mechanics, (I wrote several papers on it in college) and I read a great article by a physicist that explained that time and events(or place–for us to conceive time, we have to intersect it with place) can be seen as a wheel with each moment being a spoke–and our memory adds meaning to that event–so some moments or events “spike out.”
Each moment, each event stands apart and will always exist.
For me, my mother, myself, and all the moments I hold dear exist forever.
My favorite author, Madeleine L’Engle says,
“The great thing about growing older is that we get to keep
every age we’ve ever been.”
Family Advisor at www.Caring.com
Syndicated Blog at www.OpentoHope.com
Kunati Publishers, www.kunati.com/mothering–mother-memoir-by-car/ – 95k