Losing a mom—bit by bit

“I’m going to cry when I leave here,” Serena said for the umpteenth time.  She spent the month of July taking the children to her beloved American Midwest, introducing them to aunts, uncles, cousins and a grandmother who embraced them as part of the Patterson clan.  They saw cornfields, buffalo, church basement suppers and Fourth of July fireworks.  They swam, hiked with Aunt Sue, caught fireflies, and played board games with Grandma.  But these beginnings were juxtaposed, as they often are, upon losses and endings.


Serena’s mother,  now in the advanced stages of Parkinson’s disease, has changed irrevocably.  Although her zest and appetite for life have not diminished, her body cannot respond.  Joan keeps falling, body pitching forward while feet remain planted.  People marvel at her “good bones”, but she is a fragile wonder who will one day, perhaps soon, be unable to live even semi-independently.  Already, her eyes often refuse to track the printed words on a page, and she, who for twenty years taught 12-year-old non-readers to break the code of literacy, cannot read.  One day, her mouth will not form the words that she so needs to speak, and we will lose the stories that she keeps for us—pictures of times and places that are gone for good.


On the day of her leaving, Serena was dry-eyed.  She ushered the kids through the connections of taxis, airplanes, busses and ferries. But when she saw Monika the tears came, relief mixed with deep sadness for the mother left behind in South Dakota.


Losing parents is hard.  And although it is devastating to lose a parent without warning, losing one slowly is, in some ways, a more demanding experience.  How can we say good-bye to the parent that we knew and depended upon, when she is still here, needing us?  We feel orphaned, on our own to navigate the world without an older, more capable generation above us to help.  In its place we have a new dependant, who is neither self-sufficient nor a child. Even in small things, Serena’s mother, unlike a child, feels entitled to speak her mind. And when it comes to big decisions, she is uncompromising.  Joan fixes her children in her intense gaze and says, “you will not decide for me when to enter a nursing home.”   This “dependant” demands, and deserves, to be in the decision-making role over her own life.


So what have we learned about making it through this life passage, giving to our frail or ill parents as much support and dignity as possible while maintaining our own health and well-being?  Here are some general points to consider:


1.  Avoidance will be regretted.  Stay in touch, and, to the degree that geography and family dynamics allow, involved.   This time is a gift—a difficult gift, perhaps, but an important one to accept and grow with.


2.  Don’t do this alone.  Construct a family team.  Everyone can do something—even if they live far away.  Set up a first-circle team that does the day-to-day care, and then surround that team with a second-circle whose job it is to nourish and support the first circle.  Distant siblings or cousins can be the debriefing team by phone; sometimes not being in the thick of the drama lends a useful perspective. A fresh perspective sometimes flags new concerns or brings a new idea to old problems.


Serena goes “home” to South Dakota for a few weeks each year, bringing fresh energy and an undivided focus that her sister, who does the day-to day care for their mother, may find in short supply.  This works so well that they save up tasks for Serena’s visits.  Her sister gets a break, and their mother gets some outings and variety.


3.  The senses of hearing, sight, smell and taste are apt to decline or be lost.  Touch remains our most primal sense—the first to fully develop and the last to be lost.  Reach out–hold hands, kiss cheeks, give foot rubs, or offer massage.


4. Now is the time to put photos into albums, sort and admire keepsakes together.  Review the past—gather history while you can.


5.  Savor the dignity that transcends bodily functions.  There is a particular beauty to translucent skin, laugh lines, and the tender soft folds of a “sagging” belly.  Admiring it may be a learned skill in our youth-obsessed time, but learning to see this beauty is essential to facing our own inevitable aging process.


6.  Get practical advice from the experts.  Occupational Therapists, Social Workers, Counsellors, Psychologists, Neurologists, Physiotherapists, Nurses, Complementary Health Practicianers (such as Accupuncturists and Naturopaths), Long-term Care Workers, and Hospice workers are some of the people who routinely work with frail elders and/or the families that support them. Let these professionals steer you through the labyrinth of practical considerations, from equipment to levels of assistance and specialized housing, to planning for death and the grieving that accompanies it.


7.  Think about what respite means to you, and line some up.  This might be time to go out and play, someone to talk to who understands, or the chance to savor something beautiful that nourishes your spirit.  Heck, go for all three!  You can’t draw water from a dry well, so top-up your spiritual reservoir often.


8. Let elders make their own decisions to the greatest extent possible.  You might not agree with their priorities.  We once knew a woman in her 90’s who smoked daily, to her daughter’s chagrin. “What does she think?” the old woman asked, “that I’m going to die young from it?”  Give in where you can.


9.  Take responsibility for your own health and safety, and try to separate this from the above principle (number 9).  Serena’s mother gets to make decisions about her own activities and supports (including paid helpers), but that power does not preclude her children from setting limits on what they can, or will, do.  For instance, if Serena’s sister is not available to take her mother to church, Joan can still go—if she accepts the help of someone else.  These kinds of negotiations are very, very tricky, and fraught with possibilities for guilt and resentment.  Almost every family needs a Counsellor at some point to help sort out boundaries and responsibilities.


10.  Let yourself laugh.  It may be black humor at times, but funny things really do happen with Alzheimer’s and Parkinson’s disease.  Tell funny stories among your team of caregivers.  And if you think your sibling is being morbid for laughing at something as serious as incontinence or memory loss, it’s time to lighten up—or at least refrain from judgment.


11.  If you feel like crying, cry.  Grief usually comes and goes in waves.  The grief that we feel while our parent is still alive does not make the grief that comes with death any easier.  Still, we can practice up on our crying skills.  Top up the liquids:  drink extra water to replace the tears.  Carry tissue paper or cloth handkerchiefs at all times.  Don’t apologize or let tears derail a conversation—they are a part of life and it’s time we all get used to them.


Most of us have at least some fear that we will have a time in our lives when we, ourselves, are frail, disabled, and in need of help.  Being there for our parents allows them to lead the way for us, to teach by example that the beauty and dignity of living extend far beyond any limits that we might have imagined.  Since we do have disability and pain as part of the human condition, we may as well seek some redemptive beauty in it.  Once again we recall  Leonard Cohen saying, “There is a crack in everything.  That’s how the light gets in.”