Mother’s Day: Coming to Terms with the Cruelty of Parkinson’s

With Mother’s Day fast approaching, I thought I’d share this piece I wrote a few years after I lost my mother. This first appeared in Blood and Thunder: Musings on the Art of Medicine, a print magazine published annually by the University of Oklahoma College of Medicine.

Mom with J. Conrad Guest and sister, Mary

 ***

Mother’s Day at six: finger-painted pictures, cutout flowers and Elmer’s Glue. Clumsily fashioned ceramic turtle ashtrays, and cards with simple words filled with love and written in shaky block letters … all long since forgotten by the child, but cherished forever by Mommy, so proud of her young son.

As the child grew older, the homemade treasures became a Hallmark tradition: cards chosen with care, a special sentiment scrawled inside to personalize it, to make it different from the hundreds of other cards purchased for other moms. A necklace, a pair of earrings, a ceramic or pewter figure, sometimes a book, and always a brunch—time with Mom, perhaps the most treasured gift of all.

When did all that change? For me the change came in my twenty-fourth year, my mother’s fifty-second. A weakness on one side of her body and a slight tremor; diagnosis: Parkinson’s disease. I’d heard of this disease, but knew little of it and its cruelty. Human nature, I suppose, to ignore the unpleasant until it touches us personally. Parkinson’s had touched my mother. She would suffer from its effects, become weaker day by day even as she fought her battle, a battle she was destined to lose, one day at a time.

Yes, Parkinson’s had touched my mother, but it would touch me, too, and my dad and my sister as well. For the next eighteen years we would all become intimately familiar with Parkinson’s and its relentless pursuit to steal from Mom her functionality as well as her dignity. Helpless, we could only watch. Innocent bystanders, we would see, firsthand, Parkinson’s handiwork. And in the process Dad would lose his wife, and my sister and I would lose our mom.

In the early stages its effects were barely noticeable and came and went. Mom had good days and bad days. All too quickly that changed: she had bad days and worse days. She quickly learned that protein in her diet worsened the tremors, and so she began eating less and less. She would lose the ten pounds she always wanted to lose.

Through it all, Mom struggled to maintain a sense of normalcy to the madness. She drove a car for as long as she could. In time it became an effort for her to get up from a chair and cross a room; at the very end she needed assistance getting from the bed and down the hall to the bathroom and back.

My visits to the house I grew up in revealed Mom engrossed in her daily routines: dusting, vacuuming, laundry … struggling to keep house in the same fashion she had while my sister and I were growing up. “Why,” I asked one day, not understanding, as she struggled mightily to iron a pillowcase, “why do you work so hard, Mom?” “It has to be done,” she answered patiently.

During the early stages of her condition it was good therapy; towards the end it seemed that she had become somewhat of an automaton, functioning solely on what she’d managed to convince her broken brain was necessary in order to maintain her normalcy.

In public she was most self-conscious of her condition. “I’m sorry,” she would say, apologizing for the extra few moments it took her to make up her mind over which item on the menu she wished to order, to get her wallet out of her purse, or for the difficulty she had in making herself heard as her speech became more and more slurred. “I have Parkinson’s.”

Once a month I got a call asking if I wanted to split a pizza. Splitting a pizza with Mom meant that I’d call the order in and pick it up. Once home, she’d pay me for the pizza. How could I pass up an offer like that? She rarely ate more than one slice, because the protein would cause her to shake, but that pizza always managed to “hit the spot”.

As dad got older, I helped with much of the yard work, mowing the lawn in the summer, raking the leaves and cleaning the eaves in the fall, and shoveling the snow in the winter. I also painted the garage for the last time. But Mom was always out there too, offering what help she could, even if it was only to bring me a cold beer. In the spring, when most Michiganders welcome the warm weather after months of winter and thrill at the sight of new growth, Mom paniced. Springtime to her was the harbinger of autumn, when the leaves dropped, and who was going to rake up the leaves for her?

The ten pounds had become twenty. Eventually her forays into public became less and less frequent. On her worse days she refused to put herself on display; on her bad days she needed to get out of the house. A prisoner of her own body, she occasionally sought an escape from the prison that her own home had become.

Spending money became one of her few pleasures. It made her happy to bring home a new plant or a knick-knack for the house or a new sweater for herself. Unfortunately it was a quick fix—spending merely propagated more spending. Yet for all the pleasure it gave Mom, Dad, ever the more practical one and ignorant of the why behind her spending, grew more and more frustrated. A new pair of slacks was never a single trip to the mall. Mom’s condition prevented her from trying on the outfits she bought until she got home. Often it was much later that she would find she had brought home the wrong size, or that it was the wrong color to go with the blouse or sweater she had purchased a week before. The woman who once was able to unerringly pick out a picture for the dining room without a piece of wallpaper and a carpet swatch to match it to now became indecisive about which kitchen trash bags she wanted to purchase.

Despite the many clocks she purchased over the years, perhaps as a reminder that the sands of time were dwindling for her when so much living remained, a twenty-minute trip to the mall to exchange an outfit ended up a two-hour ordeal, with stops at the fragrance counter as well as the handbag and linen departments. Too late I realized the shopping meant little to Mom; it was the getting out that brought her the most pleasure.

Towards the end the Parkinson’s began to affect her speech. She had difficulty supporting her voice and spoke in little more than a whisper. About that same time Dad’s hearing began to deteriorate. The timing would’ve been amusing had the potential for disaster not been so real. One day Mom fell while in the garage and struck her head on the driveway. Unable to call out for help, she lay in a puddle of her own blood for thirty minutes before it occurred to my dad to go looking for her. Vanity aside, Dad finally agreed to get a hearing aid.

Mom began to lose her balance more and more frequently. She would come to a stop, nearly in mid-stride, her muscles locked in a sort of rigor mortis. She would stand for minutes at a time, unable to move or to call out, until Dad found her and coaxed her into motion again and assisted her to a chair, or she would just topple over. It’s a wonder she never broke anything, or worse, that she never fell down the basement stairs.

Each Christmas she made the arduous journey into the basement several times to bring up her decorations, despite the fact she and Dad rarely entertained family anymore. Yet she managed to do all of her own Christmas shopping, right up until the very end. Always a gift for me; always something I needed. Each card she ever bought for me spoke to me: somewhere inside this frail and failing body was a six-year-old boy’s mommy.

Three years before she passed away, I had a minor surgery to repair a hernia. I was off work for several weeks and unable to drive for at least a week. Mom sent Dad to the hospital to pick me up and bring me home—their home not mine. I lived alone, and she insisted I stay with them for the weekend so they could care for me. Not wanting to be a burden, it felt odd having her fuss over me; after all, she was the invalid. But it was comforting, too, being home. Having Mom take care of me.

On Monday Dad took me to my place, and every day for a week thereafter they came by together to take me to lunch. Of course I thanked them for all they did for me, but it wasn’t until Mom was gone that I realized what taking care of me had meant to her. Although she never said it, perhaps she didn’t understand it, but I had given her life a purpose again, if only for a few days. Someone needed her. Her son needed her. I’m glad now that I let her take care of me.

The twenty pounds had become thirty. Mom fought extreme depression, courtesy of her affliction. It was rare that I saw her lose her temper, rarer still that I saw her question the reason behind her disease. “Why me?” she pleaded on a rare occasion. And I could only shake my head. She lashed out from time to time, at Dad most often because he was there most often. She tried Dad’s patience; I know she did because she tried mine, too, as surely as she must have tried my sister’s.

Helpless to do little else but watch, I became angry with myself for my inability to do anything but watch. She needed assistance with nearly every aspect of her life now. Where once she needed someone to cut her food for her, she now needed someone to feed her. Someone came into the house two or three times a week to bathe her. And she began to panic: so much work needed to be done around the house and who was going to do it all?

Yes, I was angry at my inability to do anything about my mother’s condition save take care of her, and so I became angry, too, at what she had become—what the Parkinson’s had made of her. I have few regrets where Mom was concerned, but one of them is that I raised my voice to her, more than once. I hope she understood that it was never her that I was angry with.

 ***

December 1996: Dad is diagnosed with cancer. While he recovers from a colostomy, I spend the next few weeks going home—the home I grew up in—after work to fix them dinner, make sure Mom has her meds, do a few odd chores, and get Mom ready for bed. I spend the night on the sofa. Mom urinates frequently now, and she cannot make it through the night without going to the bathroom. I sleep fitfully, waiting for her to call my name to help her to the bathroom, two, three, sometimes four times throughout the night. In the morning I help her from bed and dress her for the day, fix a quick breakfast and coffee, and then go off to work, only to come back in nine or ten hours to repeat the custom.

I hear her voice call out and roll off the sofa and into motion. I pad down the hall on bare feet and pull the covers off her and help her to a sitting position. After a moment, I assist her to her feet and guide her to the bathroom. Once she is seated, I ask if she needs any meds. She has taken to calling them by color and tells me in a whisper, “Two blues and a yellow.” At this stage of her illness she takes them when she needs them, which is not always as prescribed. Who am I to argue with my mother? I go to the kitchen, wash my hands and get her meds and some water. Back in the bathroom I place the meds in her mouth and hold the straw to her lips so that she can suck some water. She swallows and I am amazed at the effort it takes for her to do so. A moment later she looks up at me with her beautiful blue eyes and destroys my last hope. Until that moment I had always hoped that whatever the Parkinson’s was doing to her brain synapses to cause the tremors, the rigidity in her muscles, her loss of balance and all the rest of the horrible symptoms of this dreaded disease … I had always hoped that it would have the decency to cloud her thinking, too. That a lucid, thinking, aware brain would not be trapped inside this fragile, malfunctioning body.

“You always wash your hands before bringing me my meds,” she tells me, matter of fact. “Your father doesn’t.”

I have been struck a blow; I nearly double over but manage to overcome the urge.

I get her back into bed. I pull the blanket up to her chin and gently arrange it around her tiny frame. I’m suddenly struck by our sudden role reversals. A six-year-old boy is tucking his mommy into bed. Has it really been so long ago that she was doing this for me? I ask myself, hastily brushing aside a tear and hoping that Mom has not seen it, that she will only see me rubbing sleep from my eye.

She looks up at me, her eyes seemingly seeing into me, and whispers, “I’m sorry to be so much trouble.”

I manage a smile and wonder if she sees her own dimples in my smile. I lean down and kiss her forehead and whisper, “You’re no trouble at all, Mom.”

A few moments later, back on the sofa, I cry myself back to sleep.

A few weeks pass and I find I am wearing myself out with this schedule. I had only suspected how difficult it was for my dad to care for Mom all these years, and suspecting is a far cry from experiencing it firsthand. She needs more care than I can give, and needs it most during the day, during the hours I am away. She is active during the day, and should she fall, my father will be unable to get her to her feet. I suggest that she consider having someone come to the house during the day to sit with her, or consider staying at a care facility for a few weeks while Dad completes his recovery from surgery, although by then he will have begun his Chemo and radiation therapy. Her eyes tear up and she shakes her head. I suggest that she deserves and needs better care than I can give her. She gulps and says, “Nobody wants me.” Crushed, I give up my argument, and never again breach the subject.

Another week passes and she complains of abdominal discomfort. It worsens the next day. She is taken to the hospital where she is diagnosed with a urinary tract infection. Admitted on Friday, she can be treated over the weekend and be home on Monday. On Sunday a blockage is discovered in her lower intestine. Because of her condition, the doctors advise against surgery. It will only serve to traumatize her and prolong the inevitable by a few days. The inevitable. For eighteen years we awaited the inevitable. Now it was here.

Mom had made it known long before that she did not wish to be tortured into being kept alive. The next day we move her to Hospice, where they will monitor very closely her discomfort and administer morphine whenever she needs it.

The thirty pounds has become forty—she now weighs but ninety pounds: a skeleton sheathed in a thin veil of skin.

I visit her every day during my lunch and every night after work. On Wednesday evening I walk in and tell her how much I wish I could split a pizza with her, but that Lona’s won’t deliver this far. Her face lights up with a smile I take with me forever. Later that evening I manage to spoon some tapioca pudding—another favorite of hers—into her mouth. I ask her if it tastes good. She nods and manages to say, “It’s delicious.” A few minutes later she slips into a coma, one from which she will never come out.

On Sunday evening, just after nine, my dad, exhausted by his vigil, asks me to take him home. I remind him to say goodnight to Mom. When he finishes, I lean down to kiss her and whisper into her ear that I love her, and that I’m proud of her. I tell her that it’s okay, that everything is going to be fine, and that I will always carry her with me. And then I ask her to let go. “Your time has come, Mother. There is nothing left here for you to do. Go and rest. You deserve it.”

My sister stays with Mom.

At just after ten, a few minutes after I get home, the phone rings. It’s my sister. My world has suddenly become a much colder place in which to live.

She passed very easily; no death’s rattle. Her breathing, which had been irregular for three days, simply stopped. Even had she the will to continue living, the Parkinson’s had left her too weak to do anything but succumb. In this she was blessed. After eighteen years fighting a losing battle, she deserved an easy death.

 ***

And now as I sit writing these words so many years later, trying to find some meaning for her suffering in a world where little of anything that happens to any of us in this brief moment we call life—for good, bad or indifference—has so little to do with meaning, or deserving, I’m nearly compelled to throw in my towel. But I cannot. I will not.

Perhaps the meaning is in the writing of these simple words, although this has been no simple task. Perhaps the meaning is in the impact of what she was and what she became and how she faced her adversity. Perhaps it is in the memory of a young boy and the pride a young mother took in hearing her son utter his first word, in taking his first step, in doing well with his studies, in leaving the nest and alternately pleasing and displeasing her, as all children must surely do. But in every card I ever received for holiday or birthday, she spoke of her love and of how proud she was of her son. Perhaps the meaning of her suffering comes in the full circle of life: that I now bear she who bore me—her memory as well as all that she gave to me and sacrificed for me.

To me, Mother’s Day is now every day, as there isn’t a day that goes by that I don’t think of my dear mother—she who bears the sweetest name, and adds a luster to the same; long life to her, for there’s no other who takes the place of my dear mother.

Why do I write these words? The answer begins to come into focus, becomes crystal clear: I write these words because it is a task that must be tended to … a task from which I will not back away, nor will I stop until I have finished writing the last …

J. Conrad Guest is the author of Backstop: A Baseball Love Story in Nine Innings, One Hot January, and January’s Thaw.

23 Comments

Filed under life, musings

23 responses to “Mother’s Day: Coming to Terms with the Cruelty of Parkinson’s

  1. Such an important post, J. Conrad, a wonderful tribute to your mother and the courage with which she faced her condition. I don’t know if we ever find meaning in lives that are filled with such suffering. I don’t see how there can be meaning, except perhaps for the love that endures in those left behind.

    My life mate died after years of suffering, and when I told the hospice nurse that he’d never had much of a life, she said that being sick was his life. I didn’t understand her comment then, and I don’t understand it now.

  2. The first thing I ever read from you, was a piece about your mother. I love your words even more now than I did then. It’s so hard to relate loss without lapsing into maudlin, self-serving pity – yet you tackle it with such tender speculation that one can’t help feeling every emotion served up in its raw and pointed detail. It is transformative, restorative and uplifting.

    On Mother’s Day and always, you do your mother a great honor. I’m sure she’s proud of you.

    • Thanks, Dana, for your comment, which might very well be the nicest comment I’ve ever received concerning my writing.

      You hit the nail on the head: we walk a fine line between the maudlin and allowing the reader to experience a piece like this in their own way.

  3. karsuzlin

    So touching to read again… Thanks for sharing it with another audience.

  4. CCC

    Very nice tribute to your mom. I can totally relate watching my dad die at home. It is hard and it is what had and needed to happen to bring peace and comfort to Mom. I know you love her and yes, she is a part of you and always will be. All I can say is what a way to say: “Hey Mom, I love you”

    Great Job!!

    Colleen

    Dear children, let us not love with words or tongue but with actions and in truth. 1John 3:18

    “One man all by himself is nothing. Two people who belong together make a world.”

    “I will instruct you and teach you in the way you should go; I will counsel you and watch over you.” (Psalm 32:8)

    • Thanks, Colleen, for reading my post and for your comments. I certainly grieved my mom’s loss, but not as much as I thought I would. And then I realized I’d been grieving her loss long before she passed. I was happy that her long suffering was over. Sometimes the greatest act of love is letting someone go.

  5. A lovely and honest tribute to your mother. My mother suffered from Alzheimer’s for years. It is very difficult to see a fiecely independent, talented, hard-working woman get caught in its cruel grip. My three years caring for her 24/7 were challenging and exhausting, but rewarding. One Mother’s Day, before she lost her ability to talk, she told me, “You’re my mother now.” Wow. I cried.

    • Thanks, Christine. That was for me, too, very difficult, realizing that I’d become her care giver. Yet it was rewarding, too. I have no regrets that I was able to make her final days peaceful. Better me than a stranger.

  6. Sunnyday

    A beautiful piece that hits all too close to home. I find myself grieving as we move forward. Moving from having your mom take care of you to having to cut her food or hold her hand as she crosses a street are strikingly painful losses. The one thing that remains unchanged is my mother’s love for my family, and how desperately she wants to keep taking care of everything and for it all to be “normal”, even when we all know this can no longer be our reality.

    Parkinson’s is a cruel disease that wears away at families, regardless of how hard we try to fight against it. It has taught me to treasure every moment though, and to take none for granted.

    Thank you for sharing your story. It brought tears to my eyes as it hit so close to home.

    • Thanks so much, Sunnyday, for sharing a part of your own story.

      Mother’s Day has touched a lot of people over the years since it was first published. It brought me a lot healing, writing it, and I think it brings to others the understanding that they are not alone. It helps that others, too, know your grief.

      My best to you and all those who read my post and shared their comments.

  7. Pingback: Happy Five Year Bloggiversary! | Second Wind Publishing

  8. Patti

    I care for my husband 24-7 who has parkinson disease, I pray there will be a cure one day for all neurological diseases. It is devastating not being able to make things better for him, am so thankful God provides me strength to care for him and keep him at home, we will be married 58years in may,it has now been 20 years since he was dx’d. God Bless You, tears flowed as I read your posting, I know the heartache you went through. Sincerely, Patti

    • Patti: Thanks so much for taking the time to read my account and for leaving a comment.

      Your husband is lucky to have you, and you truly are an angel, that you are able to care for him, sacrifice so much for him. That truly is love, and there will be a special place in heaven for you and your husband.

      Stay well and strong, and God bless you both.

      J.

  9. Miz Kp

    This post brought tears to my eyes. Your mom was blessed to have you. My grandmother had Alzheimer’s and died in 1995. I was one of her primary caregivers when I was only 16 years old. Now here I am again. My mom was diagnosed with Parkinson’s in Feb 2014. The future scares me. When I see how devoted and selfless you were with your mom, I find it inspiring. I am also a raising a son with autism so there is that also. God bless you for sharing your story.

    • Thanks, Miz Kp, for sharing a part of your life in this forum. I’m sorry to read that, at sixteen, you had to face Alzheimer’s in the manner you did.

      I’m more sorry to read of your mother’s recent diagnosis. Take comfort in knowing that they’ve made great strides in medication for Parkinson’s since my mother was diagnosed.

      I’m pleased my story touched you in a positive way, and I wish you and your mom the best, and your son, too!

  10. Marie

    Thank you for writing this. It has brought tears to my eyes as it hit so close to home. I am experiencing those feelings of anger lately….not with my dear Mum but with this horrible disease that’s taking her away from me…a little bit more each day. My heart breaks for her every single day she definitely does not deserve this.

  11. Jennie

    Im sitting here in tears and relating to you in every way…

  12. beulah

    i read your writing,tears came out from my eyes because in that same situation iam passing now . my dear mom suffering from parkinsons disease .

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