I thought I knew a lot about being a caregiver. After all, I had parented three children born within five years, successfully weathering teething, toilet training, schooling, even adolescence, and now could enjoy 3 responsible adult offspring.
However, my introduction to caregiving paled in comparison to the responsibilities I was to assume later as a caregiver to my adult loved ones. As the saying goes [in so many languages the world over], ‘small children, small problems.’
My induction to being an adult caregiver came very late one Christmas eve when my bedridden, elderly mother began to have trouble breathing and was in distress; I knew she needed more help than I could give her, and that I was the one responsible for connecting her to the healthcare system.
Calling our general practitioner who had faithfully looked after all of us for 40 years was out of the question: like so many crises, this one was happening outside ‘office hours’ and on a holiday. Mom, a frail 93-plus, had for the last while been unable to speak, let alone participate in decision-making. Her late spouse, my father, and her whole family was deceased; my only other sibling, my brother, was thousands of miles away in Mexico. I was on my own with this one.
The doctor who came in response to my call was young, earnest and quite thorough. He examined my mom, shook his head and declared ‘we’re sending her to the hospital emergency department.’
This was one scary moment. Everything I knew about hospitals from my 30-year career as a hospital social worker told me that, whatever else was going to happen that night, mom should definitely not go to the emergency department. By going into that potentially dangerous environment she would be risking infections, falls and worse. And there was no one but me to make this decision. I was frankly scared at the huge responsibility I felt I had to take on, and have never felt more alone.
I took my courage in my hands, announced that ‘we’ were not sending her to emergency, and so ‘we’ would have to make a different plan. “So now what can we do?”
The young doctor looked stumped and not a little put out.
“Well,” I continued, “if she were to go to hospital, what exactly would you do for her there?”
“Easy: take an X-ray of her chest. She is breathing so shallowly that I cannot hear if her lungs are clear or not.”
“And after that?”
“Well, if the X-ray shows she does have an infection in her lungs, I would order an antibiotic immediately.”
I tried to imagine it: this treatment would be given after mom would have been lying cold and miserable on a thin stretcher mattress in the emergency corridor for some hours. She certainly would not rate a high priority as compared to the heart attacks, car accident victims, etc. that are the emergency’s regular clientele. In the worst case, she might be regarded as a ‘GOMER’ [‘Get Out of My Emergency Room’] by the staff, something no one wants to be.
I took another deep breath: “How about you just prescribe the antibiotic now [I knew he would not want to wait the several days to take cultures of whatever was growing in her lungs] so that I can then just race up to the local all-night pharmacy and get her the drug? She will have her first dose within the hour and stay safely in her own bed, not exposed to any ER risks.”
And that is exactly what ‘we’ did, after he laboriously noted, on the chart we kept at home “daughter refusing to send patient to hospital, against medical advice” i.e. he was covered.
By the time I was able to consult the family doctor, almost a week later, mom was making a nice recovery on the antibiotic; he reassured me that I had done absolutely the correct thing. In his words, ‘we’ don’t want her to go to emergency!’
My on-the-job education in caregiving continued through my mom’s increasing frailty and eventual, peaceful death at home in my arms. Along the way there were many more crises and challenges, but at the end of the day I had the satisfaction of having been the interface between her and the healthcare system, getting her the most appropriate professional care and preserving her dignity and her wishes as I interpreted them.
Flash-forward about 5 years: my next and much more challenging episode of caregiving began at 1:10 pm, Thursday, June 19, 2003, when my dear husband David was diagnosed with cancer of the pancreas.
In later chapters I will discuss our two and a half year cancer journey together [so much together, in fact, that at times we talked about ‘our’ tumor and ‘our’ chemotherapy]. Right now, though, I want to focus on the unique contribution that you can make to your loved one’s care. No, you don’t have to be a nurse or a doctor to do this, just a loving relative or friend. Your unique contribution is that you are NOT a healthcare professional.
Professional caregivers enter the lives of patient and [nonprofessional] caregivers at a time of great stress as crucial decisions are being made. The medical professional caregiver’s knowledge and reasoning is inductive, from the general body of medical knowledge to the specific signs and symptoms of a particular patient. The more knowledge brought to bear, the better the quality of the decision made. And though you may not know it, even though you may have never studied a health care profession and may never have even been in a hospital, you have important knowledge to contribute to this decision-making.
Non-professional caregivers [and this means you!], who lack professional, medical knowledge, have an important area of expertise that the professional, by definition, cannot have. That is, you know your loved one. You know his or her personality, wishes, personal history, state of mind, preferences, supports at home, religious and other values, etc. The information you hold, while often not captured by the standard outlines for patient assessment, can be crucially important in making decisions for this individual’s care. And only YOU can make sure it is included in the decision-making process.
The surgeon’s attempt to remove David’s tumor from his pancreas was, sadly, unsuccessful. Next David had to recuperate and heal before he could receive chemotherapy and radiation to treat the tumor and keep it from spreading. We were looking at a month of recuperation so all those little layers of tissue which had been cut during the surgery [the pancreas is located way back near the spinal chord – who knew?] could knit together. In fact it took a month for David to regain enough strength to meet the oncologist.
Our bedroom at home is on the second floor, remote from the rest of the house. It tends to be dark, as David craved darkness for sleeping [he wanted it to be like a cave], even installing special blackout blinds in the bedroom; a good room for sleeping, but a dismal one to lie in day after day when one is sick.
I knew David would recover much better in the cottage he loved, where we would be together all on one floor, where he could look out from our light, airy bedroom and see his beloved trees even while he was bedridden. I found out that homecare nurses could be arranged to visit him at the cottage daily as needed, to dress his wound. They would even send help to bathe him and I was confident I could manage the rest of his care.
A group of young surgical residents came to discuss David’s discharge and were taken aback when I told them my plan. Their youth reminded me of something I had often told David: since all the junior staff changes hospitals on July 1 every year, it is a good idea to try to avoid having surgery in the month of July if possible. In David’s case, it wasn’t possible; he was operated on July 21. Yet another instance of a husband disregarding his wife’s considered wisdom.
I couldn’t take David to the cottage, they told me.
Why not? I asked.
“Well, he would be better at home, where you could get to a hospital.” We live in downtown Toronto, 10 minutes by ambulance from major teaching hospitals. I pointed out that there was a small local hospital only 10 minutes from the cottage, and a full-sized hospital in a city 20 minutes away.
“So what exactly is the risk?” I asked.
After much hemming and hawing, they said, “blood clots could go to his lung…”
“How common is that?” I asked.
They gave me a figure, a very tiny percentage.
“I’ll take that risk” I said.
David and I spent a calm, healing month at the cottage; the homecare nurses did attend daily at first, less often as he got better and at the end of a month he was almost himself again. It took a couple of weeks till he could do stairs comfortably, but he walked back and forth on the deck he loved, and later on a flat road by the nearby farm where thoroughbred horses gamboled in green grass.
I tell these stories not to disparage medical judgment or knowledge, but to point out that it is the particular information familiar only to someone close to the patient that makes the general knowledge fit the particular patient in the best possible way. And to encourage you to take every opportunity to share what you know, in the most respectful and helpful way, with the medical team treating your loved one. You can improve your loved one’s care by taking the initiative and speaking up.