SPIRIT AND CONSCIENCE: Looking for the silver lining in a cloud of frailty

At first glance she appears to be watching TV. Her face is pointed in the direction of the television, but upon closer observation it is apparent she is simply staring at the screen. This is my mother’s first full day in a 24-hour care facility. She sits in her tiny room surrounded by some of the lovely, masterful quilted works she was once able to make with ease. On the metal closet doors, held up by charming magnets, there are plenty of family photos. All of us, her children, made sure we were represented; none of us wanted to be left out.

I brought some thread, needles and piles of quilting materials from her drawers at home, but she said she gets mixed up on the stitches. I told her to try sewing on different days because some days would be better than others—the mental confusion would come and go. She suffers from what used to be called hardening of the arteries, the same condition her mother succumbed to at a much earlier age.

I brought her dictionary in case she might still like to do crossword puzzles. And I brought her Bible because it was next to the dictionary. She pointed to the Bible and said, “I don’t read that much.” I said, “Maybe you should,” trying to be funny.

My friend Rhoda said that upon moving to the nursing home, residents go downhill. Later they adjust a little, they rally and become more alert. I can’t imagine my mother’s shock as she realizes this is to be her last earthly stomping grounds, with no old friends (her old friends are just as immobile as she is), and the creeping awareness that she must now make new friends, as much as possible. Will she come to terms with the inevitable—not death, but loneliness? Will she adjust to that?

My mother isn’t entirely sure she has left her apartment for good. She mentions what she will do when she returns to her home—her absolute and immaculate domain. It is the place where the memories of her life as a registered nurse, small business owner, artist, wife and mother are stored. It is where she used to entertain with Martha Stewart-like perfection; where there is a place for everything and everything in its place; where there is evidence she might be the secret author of “Hints from Heloise”; where there are lazy Susans in every cupboard; where there is no clutter; and where every appliance, gadget and apparatus is functional, including the perfectly maintained, sturdy ironing board with tightly fitting cover—a wedding present in 1940 from my dad’s two bachelor farmer brothers.

For the first six days of our visit, before we moved her into the nursing home, my daughter and I stayed at my mother’s apartment while she stayed in the hospital. In a last flurry of “real life” we brought her to the apartment every day and cooked up a storm. I had always known there would come a time when she wouldn’t cook for us when we came to visit, and this was it. I knew she was truly failing when she didn’t even try to tell me what to do. At the same time, she was absolutely clear about where she kept every little thing, and she remembered the exact proportions for pie dough and pie filling.

The energy I put into bringing clothes to her in the hospital, helping her dress, pushing the wheelchair, helping her from wheelchair to car, and from car to wheelchair, folding the wheelchair, stuffing it into the backseat, folding the walker and resting it in the trunk, plus food shopping and cooking made me feel incredibly useful. I don’t know when I’ve felt so useful—maybe when I had little children scurrying around my knees.

We didn’t do much at her place. She napped quite a bit and tried to read a little. One day we played rummy tile and although she sometimes put the numbers upside down, she still beat me.

On one of those days, my aunt came over and we tried to find out what my mother wanted to take to her room in the nursing home. We also tried to determine which items were valued objects with family history that shouldn’t be shoveled into an estate sale. But we didn’t get too far. It all seemed abstract to her, and maybe not too important.

We had talked earlier, when my brothers and sister were there, about which furniture and pictures she wanted to take with her to the home and then, of what was left, who wanted what. Since I live the farthest away, I had to take my things now instead of waiting until her apartment is sold.

When my father died, in 1990, my mother discovered he had left a piece of sheet music on his piano, “This World Is Not My Home.” Maybe my mother now resonates with that sentiment. But I still feel very much tied to this earth and the things of the earth and therefore felt that I was plundering her home. There were gaping empty spots on the walls where I removed the photo portraits of my children as toddlers; a complete miniature tea set given to me for Christmas when I was 8, displayed in a special shelf designed and built by my father; one of my mother’s wall hangings called “The Mariner’s Compass”; a painting of a little girl talking to a bird in a tree, a gift to my mother from her parents when she was a little girl (when I was growing up I always thought the girl lived in an underground kingdom); and some plates from Granada, Spain.

Remaining were two large paintings of the farms of my two sets of grandparents, which, thankfully, my brothers will take. The painter was Betty, a good friend of both my parents and myself, who died suddenly seven weeks after my father’s sudden death. We learned to know her years after she lost the use of her arms, paralyzed from polio in her early 20s. She painted wistfully, with longing and great love for this world, by holding the paintbrush in her teeth.

Betty dealt with her handicap in a courageous way. In general she took charge of the essentials and let go of the inessentials—she had the power to effect change in other people’s lives by caring about them. The more helpless you are, the more you are called upon to take charge, to give something irreplaceable. For example, at the First Church of God where I play piano half the time, the great-grandmother of the church is very, very old. It takes her a half hour to get from the car to the sanctuary (with a lot of help from her son and others), she’s hard of hearing and she sleeps blissfully through the sermons. I always give her a hug and she always says, “God bless you, darlin’,” an irreplaceable blessing I look forward to and which, I believe, gives me strength.

Just before our trip to Kansas, I went to see Betty’s daughter and was deeply struck by another of Betty’s paintings. I had seen it before but it hadn’t really registered like it did now. Betty’s darkest hours of helplessness, loneliness and vulnerability informed the image of a forlorn, broken kitchen chair standing discarded in a farm field. I know there were many times when she felt like she was something you would throw away.

Nevertheless she believed, most of the time, that life was valuable in all its forms, even when it appeared to be worthless.

Now I’m hoping and praying that my mother’s caregivers have reverence for life in all its forms, even when it appears to have no more value than a broken chair.

My mother’s gradual downward spiral began with a mysterious one-car accident a few years ago. She was driving on the freeway one minute and the next second she woke up in the ditch with no knowledge of what had happened. The investigating officer asked her if she’d been drinking, which gave everyone in the family a good laugh. (She may have had a sip of wine once many years ago.) Then the next spring, for no apparent reason, she fell and broke her hip. The hip healed without incident but she was having unusual drops in blood pressure that made it dangerous for her to walk around unattended. She became weaker but still managed to live alone.

Then came the gravest problem of all. A ligament in her foot burst. It just cracked. She said it sounded like the porcelain of the shower floor breaking. From there she developed hammer toes, had surgery, got orthopedic shoes and little toe supports. The foot is painful and doesn’t serve to support her. Between the damaged foot and the fluctuating blood pressure which has caused other falls, walking is a major problem. She gave up her car last fall. Now she gets around in her wheelchair if there is someone to push her, or shuffles with her walker, perhaps across the room.

The natural isolation that occurs when a person becomes immobile is unimaginable. As long as one can walk and drive, one can go out to where the people are. One can seek company when the fancy strikes. A mobile person can choose to be alone or not be alone. This lack of choice is an immediate imprisonment.

At my mother’s apartment I found four longhand notes she had taped to her door at different times asking visitors to pop their head in the door, call out their names and wait for her to get to the door, to please not go away. The notes did not read like desperate pleas, but at the same time they indicated a strong fear that people would just knock and, finding no one home, would leave.

The impotent position of waiting for visitors can be understood by prisoners, infants, animals at the humane society, or mental patients. That’s why Jesus told his followers to visit those who are in prison as an expression of compassion for those with various forms of immobility.

I admire my friend Jan for her dedication to the elderly members of her family. She lives in downtown Minneapolis and drives to a facility in Bloomington (a southern suburb) every other day to visit her very aged aunt, and goes to St. Cloud, an hour’s drive, every other week to see her 91-year-old father, who still lives at home.

One morning before I got to the hospital, my mother’s pastor had dropped in. She was delighted that he sang a song for her. She said he has a beautiful voice and was surprised he was cheerful enough to sing considering that he is being fired by his congregation, apparently because he is “strange and weird.” (The rumor in the small town is that he has been so labeled because he kisses his wife in public too much.) If he visits my mother, and furthermore sings beautifully, he’s OK in my book. And, as far as I’m concerned, he can kiss his wife in public all he wants if it’s OK with her.

My mother’s situation made me grateful for my own mobility. When she would say, “Could you get me my hearing aid box?” or, “I need a toothpick … There’s one in that drawer,” I was happy to jump up and get it because I was reminded of how easy it is for me to walk four steps—without pain, without losing my balance, without forgetting why I’m walking over there and without putting on my orthopedic shoes first.

Illness and weakness were frowned upon in my family of origin, and even more unacceptable were complaints about illness, weakness or pain. So, I see my mother not complaining, as is to be expected, and I wonder if she thinks less of herself for being weak and debilitated. Is she ashamed of needing help?

I also wonder if she worries about her past sins, real or imagined—does she have any of those? Is she afraid people will be mean to her now that she is helpless? My friend Joan says, half-jokingly, “I try to be nice to people because I never know when I’ll be helpless in a wheelchair.”

During my visit with my mother, she said various times, “I’m getting good at doing nothing.” At first I thought she was just giving up on life. But then I thought, maybe she’s letting go of certain things and making room for others. She’s been reading “I’m Still Dancing,” a book by a nun I know in Minneapolis who just died, Sister Rose Tillemans, (Sister Rose is alive in Kansas!!!) and tells me often how much she loves it. Maybe her willingness to do nothing is evidence she’s moving into a more meditative state. It’s certain that she’s in failing health, but maybe not everything that appears to be evidence of it actually is. Maybe when she’s sitting there doing nothing she’s just sitting there with God, as people do who practice centering prayer.

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