WHAT CAREGIVERS SAY AS THEY JOURNAL
Each of these pieces was created in a Journaling for Caregivers e-mail workshop. My thanks to JoAnn McGowan, Barbara Sands, Nancy Tune, Dora Wassum, Marion, and Joe for sharing their writing here.
I never expected…
you to be frail and forgetful and me to be frustrated and impatient with you. I never expected that you who can recite long passages of poetry from your youth to call me to ask me why you are calling me, a note of fear in your voice. I never expected to stand at the top of the well watching you sink into the well of confusion and forgetfulness not far behind my mother. I never expected to tell a niece, “be sure if you marry this older man that you are prepared to someday be his caretaker, ” not “be sure you love him.” Will I, like John Updike said, love your memory better than I love the you in front of me, asking me again the same question you asked a few minutes ago? The question that I answer again but with exasperation. I never expected that my frustration and impatience would bleed out into the rest of my life.
What else have I never expected? I never expected I would greet the long winters with dread and loathing. I never expected that I would be anything but young and thin, vibrant and feisty. I never expected to grow tired of competition, of forever striving, of suits and pantyhose, of polished nails, of dancing on the head of a pin. I never expected to feel drawn to the cloister, to the garden and not the classroom, to the smell of flowering milkweed in the spring, to the ineffable. I never expected that I would walk a path I hadn’t either made or mapped. I never expected to ask a question that I didn’t already know the answer to - a maxim of trial practice. Interesting that…trial practice…perhaps that’s my life now, a trial practice that requires asking questions to which I do not know and never may know the answer.
~~ Alice Rose is a semi-retired college instructor currently teaching online health law and ethics courses.
1 among 71 women will be afflicted with ovarian cancer. 3 in 4 women survive at least 1 year after diagnosis. 46% will survive beyond 5 years after diagnosis. In my cancer support group of the women with ovarian cancer women, 1 in 7 survived, 3 died within 3 years of diagnosis, and the other 2, well…they simply disappeared.
These are the grim statistics I consider as I drive through familiar route to where my cancer support group met every other week from 2003 to 2006. I drive in the growing darkness illuminated by an almost full moon, passing groups of small children hunkered down by bulky costumes, gathering treats in their plastic pumpkins or cotton bags.
From Park Presidio I turn at Anza and remember two friends, Serena and Yvonne, who live within two blocks of each other, and died a couple of months apart from the same perverse cancer generally detected in the late stages. About 2 miles away another friend, Keriac aka Jane, lived in a loft above her dance studio, and died in dismal month when fierce winds blew off half my chimney cap.
I am driving to meet two friends who are the only other survivors of 10 members in a gynecological cancer support group that began meeting in October 2003. It was the three of us who expressed interest in dissolving the group. Ironically we continue to meet month after month, but no longer in the closed conference room gathered around the table discussing the latest research or clinical trials, and commiserating on the brutal effects of chemotherapy. These days we meet in one of many museums in the City; at crowded but convivial restaurants or bars; at movie theaters. Tonight we will go to a sold out literary event at the Jewish Community Center to listen to a conversation between New York art editor Francoise Mouly and R. Crumb discuss Crumb’s illustrations of the Book of Genesis.
I have joined in the spirit of Halloween and dressed up in thrift stores finds: a long flowing shimmery purple skirt, black low cut lace top, sparkling wings, mauve and purple pointed shoes. In my long curly false eyelashes and purple lips, I think I convey benefactor-seductress-fairy godmother. If I had the powers of a fairy godmother, I would bring back those friends who are ghosts in the neighborhood I traverse tonight, All Hollow’s Eve, if only to gaze at their eyes and express gratitude at their comfort and companionship along the road in cancer world.
Caroline Alcantara is an administrative analyst at a California State University. She lives in Daly City, CA.
I keep thinking about what it means to be a caregiver.
It's not my employment, even though it takes most of my time - I don't get paid. I can't put it down under occupation on my 1040. I have to put “Homemaker” or even better “Unemployed”, which stirs a simmering pool of resentment in me every time I have to do it. I'm not going to get Social Security credit for doing it. That's one pretty clear message of how caregiving is valued.
It's not an avocation - I didn't get a calling to do this. I'm not naturally gifted at it. I got it as a door prize following a trip to the emergency room. I do this willingly and freely, but not by choice.
It's not a good icebreaker. I've noticed I find of ways to make dementia sound more appealing or I scare some people. I don't say my husband has dementia; I say he has memory issues. I don't say he's got a rare, incurable disease; I say he's medically interesting.
It's not isolation. I've met so many truly caring people I wouldn't have met any other way. I've found the courage to overcome some of my natural shyness and reach out to people more.
It's not punishment. This isn't atonement for something bad I did to someone else. It's not God's way of making me a better person. I think I am becoming more of the person I want to be, but I hope I would be doing that no matter what happened to me.
It's just life.
JoAnn McGowan is a full-time caregiver and former software engineer living in Santa Clara, CA.
I miss travel. I always thought that, in retirement, my husband and I would travel as a way of life. We’d take weekend trips and weeklong trips and longer trips. We’d return to all the places we’ve loved and have new adventures in places new to us. We would be free of the necessity to plan for traveling with babies or with children who have their own schedules. There’s no dog to kennel. We have no work obligations. We could wake up one morning and over coffee decide to drive up the coast, stopping whenever we pleased, going until the weather got too cold for us.
Now I have to admit that we have never been what you would call free spirits. It’s not highly likely, in fact, that over morning coffee we would decide to drive farther than to San Francisco from our home on the peninsula. But that was my fantasy, and I’m sure we would have carried out some version of the travel dream if Bruce were healthy.
So I am deprived, and I am bitter about it. But I am also blessed. We do have freedom in terms of time, and we do manage to use it. Every few weeks, we drive to Princeton, just north of Half Moon Bay, for a meal at Barbara’s Fish Trap restaurant. We aim to arrive at 2 or 3 in the afternoon, to avoid the long lines at mealtime. As soon as we leave the freeway and head up the hill toward the coast, it feels as if we’re on vacation. Cresting the hill, we can see the ocean in the distance. Winding down into Half Moon Bay feels like heading to an exotic location, and driving through town to the oceanside road clinches it. The air feels and smells like the beach, informing us that we must be far, far from home. The staff at Barbara’s, where a sign says “If you have a reservation, you’re in the wrong place,” is friendly and welcoming. The fish is always perfectly fresh, the oilcloth tablecloths clean, and the view of the ocean lovely. Settling in to a table, even if it is effortful with the wheelchair, is friendly, with staff helping and fellow patrons easily shifting to make room. One afternoon when only a few tables were occupied, a conversation sprang up about where people were from. We all had ties to the east coast, it turned out, and enjoyed sharing them. (Our waitress had been born in Virginia, not far from where I grew up in Maryland.) Another time, when my sister was with us, we were graced by a flock of pelicans near the beach.
I have not lost my desire to travel. I have a fantasy every time I drive past San Francisco airport that, if only my passport were in my purse next to my credit card, I could just exit the freeway and choose my destination. But Barbara’s Fish Trap is its own kind of adventure, and I grudgingly admit that I might not be able to appreciate its goodness if I could go just anywhere.
Nancy Tune is a caregiver and writer living in Palo Alto, CA.
Well, here I am again at the last moment.
I have chewed off a chunk of extra curricular activities this week including preparing for Mother's Day. In and around the daily care and running of this household and working with Teddy's schedule I am supposed to be reading a biography of William James for my book club (500 pages), organizing the caregivers for Teddy, going three times a week to the Chiropractor to try to keep my own body in working condition (sometimes I think this is a losing battle), etc. etc. on and on and on.
I have so enjoyed the vignettes I have been reading from each one of you. We have been all over the map with fear, angst, real life experiences, head trips and all of the things that I relate to so well.
The good news is that each and every writer ended up in gratitude or at the very least acceptance and expressed the magic ingredient in my world - love.
Love for self, love for the one we care for, love for the neighbor who drops in with the much needed sugar rush (homebaked) or the neighbor who occasionally takes the garbage bag off of the porch and runs it to the trash bucket, etc. etc. etc.
Teddy has had some quality visitors lately - I tease him and tell him that he has the best of all worlds - women who come and converse with him, laugh with him, watch movies with him, or Jeopardy (whatever takes their fancy). He doesn't need a babysitter, he needs companionship and they supply a more well-rounded life for him. Sometimes when he has a day or two with just me we both fall asleep in front of the tv for hours on end - a coping mechanism I am sure.
I had an absolutely perfect Mother's Day. I heard from or saw all five of my living children, some of the grandchildren and another shot of sitting with the latest great granddaughter in my lap (now 3 weeks old). We had a barbeque and sat around in a lovely garden and they waited on
Teddy hand and foot. They adore him. Then someone told me how to find my missing granddaughter (I have not seen her for about 8 or 9 years. I tapped into a webb site and found her and saw pictures of her little boy (my first great grandchild) and her sister. I am so filled with feelings - regret - loss - memories of all of their childhoods, etc. etc. and I left her an e-mail message and hope that she will connect with me. We were very close once upon a time but her very addicted mother caused a family split. She was my first born grandchild and the first of two children that were left behind when my wonderful son was killed in a bad freeway accide nt at the age of almost 32.
I am going on and on - didn't know I had so much to say - or so little. I type as fast as I think so I could do pages and pages of stuff.
My head is out to get me so I write it all down and clear out. If I let it begin with "what if?" or whatever the future has in store I will ignite and burn up - I stay in the now - do what is in front of me to be done - accept my life as it is not as I would wish it - I love my Teddy - that is the bottom line - it is what it is and I am here because of love of life - his and mine together.
See you at next writing.
Barbara Sands, a full time caregiver and former attorney’s assistant, lives in Sonoma, CA.
Thoughts About Me
We all change and grow as we move through this life gaining experiences and knowledge. That's not a bad thing but I'm not certain I like the way my life has changed now that caregiving has become my life. I've acquired new knowledge but it's not necessarily the kind of knowledge I would choose to learn.
In my former career I was a special education teacher. I loved working with the children and I loved showing them what they could do despite their limitations. We formed a team and together we did the impossible every day.
I've had parents tell me that I gave them their first family Christmas because their child never understood or anticipated the holidays before and this year they were excited and filled with the joy of the season for the first time. Sometimes parents would sit across from me in a conference, their eyes brimming with tears, because their child was able to read to them from a book and they never thought that could happen. I've seen a child's face light up with glee while the wet streaks of their tears still glistened on their cheeks because they finally managed to tie their shoe for the first time!
The school psychologist would meet me in the hall and tell me to sharpen up my magic wand because he'd just met a candidate for my program. "I always feel so good when I can recommend your class for a placement." Momentarily I would feel a jolt of pride and then I'd start contemplating how I'd fit another student into my already tight schedule and wonder if he was sincere or just trying to soften the blow of having added to my already bulging workload. Still I loved the challenge of meeting a new student and observing them until they told me either in words or actions what would motivate them, what they needed to learn and what special talents lay hidden in that frail body or complex brain.
My first supervisor told me I was wasting my talents working with special education students but she didn't understand that regular education students can sometimes learn in spite of a poor teacher while a student with special needs had to have a teacher with special skills. Every time a child learned something, accomplished something or succeeded with great effort, I'd secretly say to myself, "I did that".
I don't bring the same confidence to my caregiving and I don't get the sense of satisfaction from it that I got from teaching. I heard the doctor when he told me that Mom wouldn't be here today if I hadn't devoted my life to her for the last five years but I question if that is an accomplishment at this point. Has she suffered longer than she needed too?
She didn't want the pacemaker put in two years ago but the doctor in the emergency room said if I took her home without it she'd die in a few days. With it people regain their lives and live on for years or so the doctor said. Mom never got her level of functioning back. She agreed to the surgery because it was what I wanted her to do and she had to spend three months in rehab trying to regain some mobility only to eventually fall and break her pelvis nine months later. Again we went through a painful rehab and she was able to come home for a few more months before she fell and broke her hip.
I've learned to give suppositories and treat hemorrhoids. I've learned you can get an athlete's foot type fungus between your folds of fat and that has to be treated with meds. I've seen parts of my mother that I never wanted to see. I've learned the different routines for dealing with diarrhea and constipation. I can fix the hospital bed when the spring causes the mechanism to jump the track yet again. I've learned that watching someone you love suffer can be worse than suffering yourself.
This is a battle I can't win. She's going to die no matter what I do. I can only try to bring her comfort and companionship. It's enough. It has to be enough.
Dora Wassum is a retired special ed teacher living in Bucks County, Pennsylvania.
Natalie came in to the social work office with all her eighth grade friends, a smile on her face as always. After bouncing around with all her other friends during lunch time, she and three others asked if they could spend their 7th period class in the office as well.
"But we have a sub today!!" they pleaded, when they saw the skeptical look on my face. The substitute teacher seemed okay with the idea of them spending time in the counselor's office, so what was I supposed to say to these eager 13-year olds? Besides, God knows I adore these kids.
I was sitting in the main office, just chatting with the girls as Natalie showed her writing assignment to a friend. I don't know why, but I suspected something was up. My gut instinct, unfortunately, was right. Having no qualms about letting me read her work, Natalie shared it with me.
"Life at home is hard. Sometimes I just wish I didn't exist and I just want to kill myself," she wrote. She spoke of feeling invisible and completely uncared-for. It broke my heart. How could this sweet, seemingly-bubbly young girl feel such despair about her life?
With only a couple of questions, I was easily able to learn more about her situation. I knew from my supervisor that her Dad has hit her at home. But the stories she spoke of from this weekend were absurd: she arrived home 10 minutes later than planned on Friday night and was screamed at. And why was she late? Because she was being responsible. The school dance got out at 7 and, unwilling to walk home alone in the dark, she waited for her friends, who decided to stop at McDonald's. That is why her mother yelled at her.
The following day was worse. Natalie's friends stopped by and, after visiting Natalie, they proceeded to spend a few minutes hanging out in front of Natalie's apartment building talking with other friends. As an over-protective mother, Natalie's mother found this behavior unconscionable, and told Natalie that she couldn't be friends with girls like these. When Natalie protested, her mother hit her. In response, Natalie ran to her room crying and tried to suffocate herself - but only with the intention of escaping briefly by going unconscious. Thank God she didn't cause permanent damage.
Natalie's story is like so many others I have heard. And they all get to me, but something about Natalie hurt me more than the others. I wanted to take Natalie into my arms, hold her, help her recognize how damned strong and beautiful she is, erase all the emotional abuse she has survived, and heal all the pain she has felt. But I can't. I can't. And that eats at me. I think what eats me most is how much of myself I see in Natalie. Or, I see how she should have the childhood that I had. She's a sweet, kind, bright, respectful, and mature young woman. Unlike many teenagers who complain about their parents, Natalie's anger is more than justified. No one should have to suffer as she does. I only wish I could generate in her a sense of self-worth and pride - and help her escape her situation. But I can't. All I can do is bear witness to her pain. Teach her coping skills. Cradle her in my heart and, at the end of the day, lift her up to God and ask God to set her free.
Marion, a social worker, lives in New York City.
I do recall when I first met my wife. It was at a small farm community high school. I had gone to school with most of my classmates from kindergarten through high school. In my Sophomore year that all changed when a new little blond girl transferred to our school. I knew other boys would be giving her the "bums rush" so I quickly got a seat behind her in our classes and made a pest of myself. Persistence paid off and I got a date for an out-of-town football game and we became "steadies." In our senior year my family moved to a town about 20 miles away but I commuted to that I could graduate with my class.
Then we lost touch when we went to different colleges plus there was Pearl Harbor and World War II. I completely lost track of her during the war years but when I came back from overseas, went back to college to finish my senior year there she was at my graduation. I left for Grad School on the East Coast and upon graduation had a job in San Francisco. And there she was at Stanford Grad School. She was offered an Assistant Professorship at University of Oregon so I had to make a decision. Being a person who always plans ahead I happened to have a diamond ring hidden in my apartment and I pulled it out and asked would you stay here for this? We were married about a year later and two daughters and six grandchildren later here we are in a retirement center in our "vintage" years and the final stages of our life.
This phase of our life has been the most difficult adjustment we've ever had to make and we're having a tough time getting through it. Someone said that God never gives you more than you can handle. It will only be our love for each other that will carry us through this very difficult time. As long as I can remember this it will make these difficult times during caregiving bearable.
Hope each of you have some interesting stories too!
Joe, a retired engineer, lives in Rogue Valley.
We look forward to hearing from you.