The Shackles of Memory Loss Give Way to Magical Tales
GLOBE AND MAIL
By Freda Lewkowicz
“William,” my mother-in-law, Elizabeth, commanded, “please be a gentleman and open the door for Mrs. Higgins. Do you remember when she lived next door to us on 24th Avenue in Lachine?”
With courteous smiles, my husband, Peter, and I both turned to greet Mrs. Higgins, but as we suspected, there was no one there. We were long accustomed to the imaginary meet-and-greet of phantom visitors that appeared at Elizabeth’s door and so with no hesitation or confusion we stood and replied in unison, “Hello, Mrs. Higgins.”
At the age of 103, suffering with dementia and macular degeneration, Elizabeth imagined people who weren’t there and no longer recognized those who were. She frequently confused her son, Peter, with her oldest brother, William, who had passed away more than 15 years ago. Memory was a casualty of time in this room, but what mattered most was that we honoured Elizabeth in the time zones of both the present and the past.
They were old friends, and they were especially comforting on Christmas Day in 2016, our first family Christmas at Le Centre Bayview in Pointe-Claire, Que. Le Centre Bayview is a long-term care facility where the locked-down third floor is reserved for cognitively impaired patients. Sadness and silence settled like dust on this floor. The staff tried to inject happiness into the Christmas season but even a “Ho ho ho” from a caregiver dressed as Santa could not distract families from the human struggles and grief that took place here.
In Elizabeth’s room, decorated in the cheerful colour scheme of Christmas, we sat quietly around her wheelchair, as the lights on the miniature glass tree twinkled on and off. The felt bird that had once sung from its lofty position at the top of the tree still tweeted, but now it rested on the bedside table next to the adult briefs that thankfully were never called diapers by a sensitive staff. Yes, we were at the Bayview, where the accoutrements of old age replaced more traditional coffee table books, but the ghost of Christmas Past was present, too.
It reminded us that for 25 years, my husband and I had spent Christmas Day with my in-laws, the chirping bird and the glass tree in Beaurepaire, Que. Bordering Lac Saint-Louis, Beaurepaire, now a part of Beaconsfield, was a small village where “Bonjour, hi” was as common as small stores known as dépanneurs and eating bûche de Noël Yule logs and tourtière at the traditional Christmas Eve dinner. If I had taken a photograph of those long ago days, it would have revealed a small town blanketed in white drifts of snow, a bungalow draped in crystal Christmas lights and my in-laws framed in the doorway, a welcoming committee of two for their only son and daughter-in-law.
But the house and Beaurepaire were gone and Christmas now was celebrated in a small room masquerading as a home, a home dominated by an electric medical bed and invalid lift apparatus. In a corner of the room sat an unlikely fixture for a centenarian – a large teddy bear won in a bingo game that Elizabeth sometimes cuddled like an infant. Matching the festive decor of the room, the bear now wore a red sweater and a bright green scarf.
“Would you like some more turkey, Mom?” Peter asked as he gently fed her small bites of turkey that he had carefully cut, the same miniature morsels that his mother had undoubtedly cut for him when he was a toddler. “How about some more cranberry sauce or turkey stuffing? It’s definitely not as good as your homemade cornbread stuffing or your fresh cranberry sauce, but it still looks appetizing. Nothing, though, could ever, ever compare to your hard sauce and steamed plum pudding. Do you remember how good it was, Mom?”
Elizabeth did not answer. She had escaped into her childhood past, as patients with dementia often did. Unlike the cloudy present, her childhood was a documentary, tight sequences of history strung together with a beginning, middle and end, all resonating with minute, clear details. Elizabeth was a master storyteller and her shackles of fatigue, memory loss and confusion vanished when her narratives began. “William, do you remember when we used to tiptoe downstairs before the rest of the family on Christmas morning to put brown sugar in our porridge because father didn’t permit us to have any sugar, even on Christmas?
“I remember our treasured radio and how Grandma always insisted on listening to the King’s Christmas broadcast to the Commonwealth on Christmas Day,” she said. “The very first Christmas broadcast was in 1932, his 22nd year as monarch. Oh how I hated sitting still for so long and having to wait to open our Christmas gifts. It was such drudgery listening to that Christmas message!”
Although Christmas at Le Centre Bayview was no fairy-tale Christmas, it was not drudgery for Elizabeth as we made sure to keep any replays of the Queen’s Christmas broadcast on mute. With Elizabeth walking in her childhood footsteps, we could still believe in the magic of Christmas and family. The sepia snapshots of memory from Elizabeth’s family album comforted us, and it was easy to believe that the bleak voice of Dickens’s Christmas Yet to Come was far away and not to be feared just yet.
A Crash Course in Navigating Geriatric Care
By Freda Lewkowicz
Navigating any provincial health system and its social services for the elderly is no easy feat. While the search for advice is a long and frustrating process for me, it is life-changing for my 93-year old father and 90-year old mother. I have learned a lot in my quest to help them remain well and as autonomous as possible. Hopefully, the information I have acquired will help other weary travellers who must go down the same uninviting road of geriatric care in Canada.
Prior to May 2014, my parents shared a quiet and healthy lifestyle. They lived independently in their condo with no outside help, no house-cleaning service, no meal deliveries, and no home aid like shopping or laundry assistance. My father still drove his 2000 Malibu slowly around the neighbourhood, and my mother cooked elaborate meals daily. While the pizza delivery man greets me with a “How you doing this week?” my mother had never had a food delivery man come to her door. Ever.
But suddenly on May 15, everything changed, and no one in the family was prepared for the turbulence or the after-shocks. My father was rushed to the hospital and life, as we knew it, permanently shifted into pre-interim and post-hospital time zones.
A Senior-Friendly Hospital
The first lesson I learned in my crash-course in geriatrics was that finding a hospital whose staff had some training in geriatric care was essential. I had previously experienced problems in a suburban Montreal hospital when the staff addressed my 99-year old mother-in-law, who was hard of hearing, in French when she only spoke English. In addition, her hearing-aid battery was dead. They gave her a dementia diagnosis because she could not understand instructions. The staff also insisted on calling her by her maiden name, a name she had not used for more than 75 years. Under these frightening circumstances, anyone would be confused or appear to have a cognitive disorder.
I was shocked that both times I took my father to the emergency at The Jewish General Hospital in Montreal we found an empty waiting room. Vacant. Deserted. Silent. Like other Canadians, I was resigned to being a long-term emergency room casualty. I also have my stock of emergency room anecdotes to complain about like the time my mother-in-law with stroke symptoms waited eight hours to see a doctor at another hospital. But not only was there no delay here, there was also a welcoming team, a Meet and Greet of nurses and orderlies, waiting for patients to arrive.
We did not have to wait for triage or to be ushered into one of the 52 glass-walled, quiet individual rooms that are designed for serious emergency cases. Instead of lying on stretchers in crowded hallways, wrinkled hospital gowns exposing too much information, there are three central nursing stations called pods, which are surrounded by enclosed, private rooms. Dignity and respect for patients were clearly objectives in the new design.
I am grateful to the nursing staff in the emergency department for their genuine interest in my father’s narratives and for their compassionate bedside manner. They offered my hearing-impaired father the courtesy of speaking clearly not just loudly, and they did not mind repeating their instructions with patience. They knew to stay close when addressing him and to face him so that he could see their mouths. They clearly understood the importance of lip-reading. They also communicated with him (not me), and did not treat him as though he were a child. My father recognized that this emergency department resonated with the milk of human kindness, and repeatedly asked if he could stay there instead of being transferred to another floor.
Geriatric Patients and the Hospital Experience
Second, I now know that frequently geriatric patients and hospitals can be a toxic combination. Who could have guessed? Patients are supposed to be safe in hospitals and not leave frailer than when they arrived. Whether it is the transition from a safe, comfortable home environment to a noisy, foreign setting where one is awakened and poked at for medical procedures, the lack of sleep, lack of oxygen due to a medical condition or drugs that affect this age group differently, seniors may become temporarily delirious, confused and just not themselves.
I was clueless about the risk of delirium and other possible temporary effects of a hospital stay. Nor had I been told about the sleeper effects of a frightening past on geriatric patients. It is not unusual for this age group, re-traumatized in a new hospital environment where they have few choices and feel impotent, to return to some previous dangerous time in their lives. Geriatric doctors are familiar with the phenomenon of Jewish patients returning to the horrors of the Holocaust, and they understand how hospital routines reawaken war memories.
It is important to know about these effects and now, belatedly, I do. A sitter or watcher to keep a patient safe and hospitalized is one available option to protect loved ones. There is also a wrist-sensor bracelet that sounds an alarm or blinks lights when patients approach doors, elevators and stairwells. It is important also to have comfort items from home that might provide some security and reassurance. A quiet setting may be impossible to achieve but attempts should be made. Maybe the loud, blaring hospital announcements could be turned off in patients’ rooms at night.
Knowing that a hospital environment can be foe not friend is a very frightening truth to embrace for anyone with an elderly parent.
The Meals on Wheels Program
It didn’t take long to learn my third lesson in geriatric care, and it involved meals and less cooking for my mother. A kind social worker patiently organized the Meals on Wheels program for my parents. There was a waiting list for hot meals but frozen meals started immediately. An employee calls my parents every Thursday to take their order and the week’s meals are delivered the following Wednesday. Meals consist of a main dish and two sides.
I am comforted that my parents have some easy to prepare, nutritional meals in their freezer. I am grateful for this wonderful program, and its helping hands that stretch across Canada. It is truly a lifeline for those who are elderly, chronically ill, mentally challenged or convalescing.
The fourth miracle discovery I made with the help of my father’s pharmacy was the life-saving weekly pill dispenser called Dispill. Mismanagement of medications is a common problem for the elderly and to avoid this danger, my father’s pharmacy recently provided me with Dispill. It is a weekly pill organizer with detachable sealed blisters that eliminates any confusion over what to take, how much to take and answers the question, “Did I take my pill this morning?” The blisters packs are labelled with times, dates, names of medications and directions.
Dispill relieves my worries over my parents’ medication regime, and it is an organizer that will allow my parents to remain in their home safely.
The fifth lesson I learned is that communities should be doing a lot more to help seniors. With so many people no longer driving in my parents’ neighbourhood, shouldn’t the two nearby grocery stores offer seniors the service of taking telephone orders? They don’t. They deliver for a small fee but the order must be made in store or online.
I wonder how many geriatric citizens have online access? My parents don’t.
I wonder also how hard it must be to trudge to the store in the winter.
Other large grocery stores I called that do take phone orders do not deliver to my parents’ area. It would be a real lifesaver for seniors if all large grocery chains offered telephone-ordering services and home delivery.
Another problem I noticed is that there is not enough walk time at busy intersections for seniors with or without walkers or wheelchairs. Crossing the street is terrifying for my mother, who anxiously watches the seconds tick by and with still such a long way to go to get to the other side. I know that she is not alone.
Cities should increase the walk-time limits on certain busy corners and make street crossings more pedestrian and senior-friendly. More large grocery chains should start taking phone orders. These are small changes that could really improve daily life for the elderly.
The geriatric population in Canada is increasing, and anyone with an aging parent or grandparent knows the sorrow of watching a loved one deteriorate.
My final lesson is that every senior needs an advocate. Whether it’s in the hospital asking questions, on the phone solving problems or battling against ageism, seniors need an advocate to look after their health and interests. A support system is needed, and I am so glad that I am able to provide this for my parents.
Freda Lewkowicz, a Montreal writer, recently retired from teaching after 39 years.