caring for a grandchild, Caring for a parent, Dementia, family caregiver, memory loss

Extreme Caregiving 5: Wandering in the Wilderness

I was starting dinner when Mama got up from her nap and came into the kitchen. Meals had been quick and easy for several days, so Wednesday I was going all out with pork tenderloin, chard, roasted parsnips, sautéed apples. I was feeling happy to be taking the time to prepare a mindful meal.

Me: Did you rest well?
Mama: I’m not paying anyone else who isn’t a CNA.
Me: What do you think you need that a CNA can provide?
Mama: Someone who can take me to a doctor’s appointment and not embarrass me. And C talks too much.
Me: A CNA is trained to help the client bathe, go to the bathroom, dress, eat, monitor medication. You don’t need that kind of care. The rest is personality, not training. I’m not crazy about C either (caregiver #3 since M was dismissed five weeks ago. Maybe expressing my agreement with her will help, I thought.) And she’s temporary; someone else is coming on Monday.
Mama: And she doesn’t wash her hands.
Me: I’m pretty sure she does, but that has nothing to do with being a certified nursing assistant.
Mama: I’m not paying for a CNA if I’m not getting a CNA.
Me: If they pay a CNA more, then you won’t be charged as much.
Mama: If the Service can’t provide a CNA, I want to advertise in the paper for one.
Me: Dinner will be ready in 45 minutes.

I didn’t remind her she has had two CNAs and she couldn’t “tolerate” them. We both miss M, as I knew we would. Even Mama admitted regretfully last week that she hadn’t appreciated what she had. There’s nothing to be done about it now; that bridge has burned.

Morning nap time: Baby is screaming. I had him calmed down, nearly asleep, when my phone—that I forgot to silence—rang in my pocket. It was C’s supervisor telling me that Mama told C the day before that she didn’t have a helper on Thursdays. The supervisor knew that wasn’t what we wanted because Mama told C last week not to come on Thursday, then told me C had misunderstood. She said she told her she didn’t used to have anyone on Thursdays. I told the supervisor we did want Thursdays and to call me if she heard otherwise. I suspect the Service is getting tired of us. How much longer until they refuse to serve us?

Afternoon nap time: Baby is screaming. I had him nearly asleep when my silenced phone vibrated on the arm of the rocker. Mama. I hoped she would call Rebecca if it were an emergency. But then, she doesn’t like to bother Rebecca when she’s working, so I answered.

Mama: Dan (the handyman) is here, cleaning the floors. What did you do with the Indian basket on the end of the hearth? I’ve looked everywhere and can’t find it.
Me: I didn’t do anything with it. What does it have to do with Dan being there?
Mama: I was going to have him hose the dust off it.
Me: I didn’t do anything with it. Sorry.

Not an emergency. Baby woke up at my voice. I put him in his crib. He’s screaming. I’ll calm myself, then snuggle with him.

IMG_5561The rest of the story
Mama told Rebecca, in my absence, that C told her she doesn’t need a CNA.  Mama wants to know why she’s paying for a CNA when she doesn’t need one.

Dan told me Mama figured “Gretchen put the basket in her apartment where the cat is and it probably has mouse droppings in it.” It was under the hearth. Mama told Rebecca I’m losing my memory; that it’s worse than hers.

The wilderness
It’s Lent. In the liturgical year, this is the time of the biblical wander in the wilderness. In the natural year, it’s a time of struggle in the darkness beneath the ground. In my own life, this season has often been a time of both physical and emotional change, of moving from one place to resettle my life into a new place; a time of hovering on the edge between familiarity and safety and the dark unknown.

“A wilderness is not necessarily an evil place. It is simply a place that is unexplored… It is neither hostile nor friendly. It is what it is—an unexplored place that challenges and lures us away from [what we know]… We come from a dark wilderness, we end in a dark wilderness, and the luminous interval between the two we dare to name life.” —Rodney Romney, Wilderness Spirituality.

Mama has no idea with whom she has what conversations. She jumps from one conviction to the opposite, unknowingly contradicting herself. She makes all her pronouncements with such confidence, it’s a challenge to remember she has significant cognitive dysfunction—and I get exasperated. But she is doing the best she can in the dark, lonely wilderness of life’s end.

Baby E screams at nap time and is an amazingly good-natured creature the rest of the time. He will come away from the edge of whatever wilderness his small self is experiencing, and walk into luminosity. Mama will continue to walk in the desert until her end of days. My role, for each of them, is to be the light—if not of understanding, at least of calm acceptance. I do better with the baby; Mama seems impossible.

“Through doing something ‘impossible,’ many of us have had the spiritual experience of finding something inside ourselves that we never expected, and the affirmation that we have expanded our lives in the process.” —John Lionberger, Renewal in the Wilderness

I think it won’t be until I have walked across this wilderness of my own that I will look back and understand how it expanded my life. But maybe I just got a clue.


9 thoughts on “Extreme Caregiving 5: Wandering in the Wilderness”

  1. I can’t imagine how much it takes for you to navigate this wilderness. You seem to have expanded so much that you have become transparent, luminous.


  2. I appreciate the unfolding of this telling…the waiting to see where it carries you. The photo of E sitting in the hallway…you capture something of a year old’s bewildering emotional state. Your writing continues to be incredibly engaging! The labor of remaining attentively, unentangled with your mom…there should be a special name of a dance step in TANGO referencing this particular dance-practice with your mom…I bow to you and see you! Harriet

    Liked by 1 person

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