Tag Archives: caregiver stories

The Changing Face of Mother’s Day

When your mother gets dementia, many aspects of life decline. There is no way to swim around the waves of pain churned up by the disease. But now and then, dementia reveals things that are helpful, even rewarding. We’d never want to say thank you, but Mother’s Day is a good time to consider these strange gifts.

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For many years, my mother had only one face. She was 100% effort and diligence. Her house was clean. Her clothes were organized. Once a week she went to the beauty parlor to get her hair done. This image of my first mom — my true mom — gazes back at me from photographs. I can see how her shoes matched her dress, how her waistline stayed slim. The pictures show how well she organized everything around her to keep life running smoothly — not just for her, but for our whole family.

My personality is not like hers, and I never felt that I could measure up to her high standards of efficiency. It was impossible for me to see the other qualities she kept from public view. Mom was so quick and effective, it was hard to believe there might be something vulnerable in there.

Dementia has erased most of my original mother and put a new one in her place. It’s not a gift you’d ever ask for, but I try hard to accept the changing face of Mom. She is still a good mother. But good in a way that requires patience to understand. She can’t express herself or take care of herself. But she retains some essence of pure love that resists the cruelty of the disease. This feature of new Mom is gentle in a way my first mother couldn’t always be. She is defenseless in a way true Mom would have hated. New Mom is generous — but this part of her is consistent. Old Mom was always generous. She worked very hard to make sure we had what we needed. In fact, she often indulged us.

I hate the fact that we can’t have a Mother’s Day celebration in the old style. We used to take her to a high-end restaurant and Mom would wear one of the silk scarves that are now piled in my closet. We laughed through so many Mother’s Day meals, relishing our freedom to be happy and the delight we took in each other’s company. I do miss that old Mom. As I write these words, I long to visit those places all over again.

But I also love this other mother, the one whose eyes remain bright despite her blindness. The one who laughs even when no one is making a joke. Sometimes I wonder how she summons the strength to get through a day. Yet I am enchanted by this mother who is now so small she seems about to splinter. This is my child mom, my baby mom, my little friend who knows my voice but not my name. I am truly grateful that she is still with us. I hope that despite your trials, all of you can find some quality that  has been revealed by your mother’s transformation — something that’s still there to remind you of the treasure inside. Happy Mother’s Day.

 

Caregiver Strength

Some days, I feel 100% capable of helping my mom. If I must run 20 errands and make 10 phone calls, I will. But my emotions are like the snow in my yard, sitting in an icy pile which could support a car…or melt to a trickle that can break through concrete, through rock and….shatter my mask of strength.

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This week a friend took me for a session with someone who sees spirits. I’m not sure how much I believe in these readings, but they almost always bring up stuff I’ve been trying to ignore. This encounter was no exception. The seer told me that someone in my life had one foot in this world, and one in the next. That person, she said, has an impaired mind — like someone with Alzheimer’s. Hmmm.

My tears did not begin to pour until she told me that my grandmother’s spirit visits my mom (who else could it be?) — trying to help her understand that the other side is not a bad place. Once I began to think about this (whether it is possible or not), the floodgates opened and I was confronting many thoughts and feelings I keep suppressed.

Anyone who has cared for, or been close to, someone with dementia knows that your feelings about the disease are always complicated. We don’t want to lose the ones we love, but we hate seeing them suffer. My mom is still so cheerful despite her near complete lack of skills. This week I also heard a poem called “Shake the Dust” by Anis Mojgani that called up an image of her. Without permission, I can’t reprint the entire poem but here is how it begins [click link to hear it]:

This is for the fat girls.

This is for the little brothers.

This is for the school-yard wimps, this is for the childhood bullies who tormented them.

This is for the former prom queen, this is for the milk-crate ball players.

This is for the nighttime cereal eaters and for the retired, elderly Wal-Mart store front door greeters. Shake the dust.

This is for the benches and the people sitting upon them,

for the bus drivers driving a million broken hymns,

for the men who have to hold down three jobs simply to hold up their children,

for the nighttime schoolers and the midnight bike riders who are trying to fly. Shake the dust.

This is for the two-year-olds who cannot be understood because they speak half-English and half-God. Shake the dust.

That line about the two-year-olds was the one that got me. The words describe my mother’s way of speaking. No matter how much I want to, I can’t interpret her “half-God” language. When I’m feeling strong, it’s not that hard to pretend I know what she’s talking about. But there are moments — like after my time with the spirit reader — when that trickle of feeling gets stronger and seems to wash the strength right out of me. I just don’t know what to say to her.

I’m getting some of my fortitude back now because it’s a grey Sunday and even the clouds are speaking that half-God language. Although it’s scary, it helps to spend some time listening to those caged emotions struggling to push past our brittle surface. These feelings pull our attention to mysterious places where we can ponder — and deepen our sense of — the bewildering dimensions of life and disease.