We were called to her hospital bedside in April 2015. They didn’t think she’d make it through the night. My mom had developed sepsis, an overwhelming infection that had entered her bloodstream, probably from a few lesions that had appeared on her delicate skin. The antibiotics were working but the doctors were having difficulty balancing the amount of fluid in her body – too much and her lungs would fill, too little and her blood pressure would crash preventing blood flow to her organs. Mom was a frail and fragile patient.
Or so they thought.
I walked apprehensively down the hospital hallway, hoping she’d survived the night. When I arrived at her door her bed was empty and bare. I was aghast that they’d already taken her body to the morgue. But as I turned the corner into her room, there was Mom sitting in the corner recliner with a big smile. “Hi,” she said, “What are you doing here?”
After her husband and sister died in 2002, she’d lived alone in her home of 50-plus years until, at about the age of 85, her granddaughter and family moved in with her. Mom was getting to the point where she needed some supervision; Sara and Tony’s family was growing and needed more space than their townhouse provided. Mom and Sara had always been close; it was a great solution. Until it wasn’t. As Mom’s dementia progressed, she became a danger to herself and to Sara’s family – leaving the gas stove on, removing the gate at the top of the stairs, or leaving the house on foot for her childhood home five states away. Without a coat. In the winter. With four kids under age ten, Sara and Tony were no longer able to provide the care that Mom now needed.
Nor should they. Mom has four children. We needed to physically care for her now.
We tried having care-givers in her home. We’ve never seen our introverted, mild mannered mother be so mean. With no skill in confrontation, she became very passive-aggressive. It was stressful for everyone. So, her daughters, Carol and Lynn and I, evolved into caring for Mom in our homes, making the 3-hour transition between our houses every 2 weeks. Mom wouldn’t permit her son, Peter, to help with her bathing and dressing, so he was exempted from overnight care but he continued to manage the family business, her house, her finances and taxes. Plus he “mommy-sat” at times and was the point of contact when she was hospitalized or in rehab. He spent at least as much time painfully pulling her estate together in preparation for her passing as we did providing care. Tracking down insurance documents, getting signatures notarized, finding obscure data from 8 years ago in Dad’s limitless file cabinets. It was endless.
I can’t overstate how lucky we are to have had each other’s support and cooperation – largely due to Mom and Dad’s loving childrearing and their emphasis on the importance of family.
Mom’s care was physically strenuous (supporting her as she walked, interrupted sleep, helping her in the shower, assisting with every visit to the bathroom) but the emotional strain was difficult too. Caring for her was like holding a mirror of the future to my face. I have a lot in common with my mom. Her cheekbones (thanks!) but also her receding hairline. Her inability to remember names. Her love of red wine. Her sense of humor. I always thought my dad was the funny one, but since he died, her witticisms and dry comments have stood out more. She would zing us with some really funny comments through the haze of her dementia which made them all the more surprising and dear. But I can’t help but fear that we will have dementia in common too. Mostly though, it was sadness on the saying goodbye to the mother we knew little-by-little, day-by-day. At first she could play cards, then she couldn’t. She still enjoyed jigsaw puzzles, then she didn’t. But she could still read, then she couldn’t. Little by little, it all slipped away. I was usually seriously depressed by the end of her two-week stay.
Sleep deprivation as a result of caring for a loved one is a known risk factor for depression. Mom got up once or thrice or five times in a night – it was unpredictable. So we’d sleep in a cot in her room or on a couch by her door. After helping her to and from the bathroom, she’d be snoring away while were connecting the dots on the ceiling. Then Walter cobbled together a motion detector for us. If Mom swung her legs out of bed, the alarm would go off and we’d shoot out of sleep to reach her before she fell. Sometimes, tangled in the sheets, we fell. At least with the alarm, we could have a cup of coffee while we waited for her to wake up in the morning which was the time that she slept the best. That alarm was one of our most precious possessions – along with her handicapped parking tag and her credit card.
After the sepsis incident, the next most life-threatening episode began when Mom’s right calf and ankle became swollen, but her left did not. After sitting in a wheel chair in the ER for, I am not exaggerating, two hours, she was finally brought back to a triage room and given an EKG. We finally had their attention. There were doctors all over her now. They thought she was having a heart attack. But a chest X-ray, CAT scan, and ultrasound determined that she had a DVT, a deep vein thrombosis, or blood clot, in her swollen leg. Parts of that clot had broken off and travelled to her lungs. In fact, she had multiple pulmonary emboli, many clots throughout her lungs. (Who knows how many had occurred during her 2-hour wait in the ER?) The clots eventually led to severe chest pain. It is agony to watch someone you love in agony. With the accurate diagnosis, the medical staff were finally able to provide her with effective treatment and pain relief allowing her to sleep. A brief hospital stay followed.
A pulmonary embolism is a significant cause of death, especially in the elderly. That was the second April in a row that our nonagenarian mom survived a brush with death that much younger folks do not often survive.
Did I mention that she liked wine? Mom and Dad had a glass of red wine every night with dinner. It was one of their comforting rituals and, by God, they deserved it. While there is no medical rationale against “moderate” wine drinking (defined in a study conducted in Bordeaux as 3 to 4 glasses per day!) and wine consumption has been found, in some studies, to protect against cardiovascular disease and dementia, it was probably not a good idea for Mom now. When she had one glass of wine, she wanted another and then another and could get very demanding about it too. But she had trouble walking when she was sober; after one glass of wine she walked like a marionette. So, we found a solution to that problem, too. It’s called Fre, an “alcohol-removed” wine sold in grocery stores. Since she likes her red wine refrigerated, she doesn’t seem to notice how bad it tastes. In fact, she says it’s good. I should mention that we put it in an empty real wine bottle – she could read the labels – often mixed with a little real wine.
Mom had an eagle eye (just one, she’d lost sight in the other in a fall many years ago) not just for wine labels, but for any lint or crumb on the floor. She still thought it was her job to bend over and pick it up. Or to carry her coffee cup from the table to the kitchen, or the laundry up the stairs. Despite our best efforts to be with her constantly, she fell all too often – sometimes softly like when she stood up and went right back down again and other times more dangerously like the time I had just removed two wine glasses from her hand as she was stepping in from the deck. She once snuck past my sister and her husband, went outside, and fell down two concrete steps. And they were right there! She was like a one-eyed stealth bomber, sneaking past our radar.
She still recognized her kids and grandkids and thanked us for caring for her. She could get grouchy when she was confused or she thought we hadn’t told her about an appointment or a change of location (which of course we had, over and over). Mom was mostly living either in the past or moment to moment. It was “Be Here Now” taken to its extreme – which doesn’t seem like such a good goal anymore.
The two-week cycles of caring for Mom were hard but there was always an end in sight so the plan worked well for a few years. We recognize how unusual our situation was and are thankful that our circumstances allowed, and our partners supported, this provision of care. We feel good about having been able to give back to her for all the physical and emotional care she provided to us all our lives. We’ll never balance that scale. As long as she remembered (usually) who we were and knew (mostly) where she was and was able (with help) to manage the stairs, we tried to provide her the care and the company we thought she deserved.
But then we couldn’t anymore. We got scared. Mom needed more medical oversight than we possessed. With mixed feelings, we looked for a nursing home where she’d be safer in a location where we could visit. We were exceedingly lucky when a bed opened up for her in the Easton Home. It’s a special place. It has been continually in use as an elder care facility since it opened in the late-1800s as a home for “war widows and spinsters.” They finally admitted men in the mid-1980s. It was such a great place. The Easton Home has reminiscence-themed areas including a 1940s-era kitchen and living room, a faux bakery and general store, and a dining room painted like the rolling hills of Pennsylvania. The finches in the aviary had 3 little baby chicks while Mom was there. The staff were the best we’ve seen anywhere. They took really good care of Mom who was as sweet and cooperative a resident as one could hope for. The staff loved her. And the residents loved our visits, especially when her great-grandkids would come and help them with their crafts. They strung a lot of Cheerios for the birds in the trees outside.
Another mini-stroke stole the sight from her remaining eye and finally took her out. That a stroke would target the one eye she had left just seemed too cruel. The odd thing was that Mom never mentioned her blindness to the staff, (of course, they noticed right away), never told anyone she couldn’t see, she just soldiered on as if it didn’t matter. But it did matter. She withdrew physically and mentally until she finally admitted, at 95, that her aches and pains were probably due to old age. She had never, ever admitted that she was old before. She went downhill pretty fast after that, but she always recognized the voices of her kids. She knew when we were there and she was cheerful when we would talk to her. Near the end, Peter and Lynn got her into the hospice and Lynn was with her when she died on November 9th, 2018. Comfortably, at peace, and in a pink nightgown, she sighed her final breaths.
She was a tough old Irishwoman who wrested every last day out of life, who did not go down without a fight, whether it was for one more glass of wine or one more phone call to her (deceased) sister. But in the end, she did “go gently” into that final “good night.” Some say Dad wanted her back for his 102nd birthday on November 11th. You go, Mom.
Susan Glueck Harned
Hello Kristine, loved reading this essay about your mom. Friends of mine currently have their 96 yo mother living with them 24/7. Arduous and rewarding. Your piece captures both sides. Thx for sharing.
Sue (Glueck) Harned