It is always my pleasure to host Ottawa-based caregiver and writer Lise Cloutier-Steele here at the Caregivers' Living Room. Lise's voice is full of truth and compassion. Read on!
The day my late father ended up in a hospital’s emergency department, never to return home again, we became a family in crisis. Both my parents could not get a grip on what was happening, nor did they understand the explanations provided by doctors about his condition. What became abundantly clear to me, however, was that I would have to take on the responsibility of managing whatever would come next.
Up until that fateful day in August 2006, my father had enjoyed relatively good health and an active lifestyle. He had gone to the hospital on his own, to report his dizzy spells, loss of balance, headaches and the infection in his right eye. My mother was so used to hearing him complain about these issues that she wasn’t overly concerned, and she even asked me if the doctors involved in his care were inventing problems where none existed!
Nine months later, my father was transferred from the hospital to a long-term care facility with the following confirmed diagnoses: orthostatic hypotension (a condition described as a sudden drop in blood pressure caused by dehydration, medication, or a nervous system dysfunction, and quite possibly the reason why he would sometimes drop to the floor when he got up from a sitting or lying position); dementia, loss of short-term memory, critical diabetic condition, depression, debilitating headaches and a damaged cornea. He was also fitted with a vascular catheter he would have to contend with until the end of his days, more than three years later.
The headaches and the damaged cornea were diagnosed as aftereffects of the herpes zoster virus, also known as shingles, from which he suffered greatly during the first few weeks of his admission to the hospital. Ask anyone who has ever experienced shingles, and they will describe how painful the symptoms can be. But facial shingles are the absolute worst, according to the specialists I consulted, and I found it so sad to watch my father suffer as greatly as he did from that condition.
Once admitted to a long-term care facility, it took months for my father to adjust to the realities of institutionalized care, and who could blame him? He was having crying fits during my daily visits with him, making it harder for me to leave without feeling guilty. Had there been another option for our family, he would not have ended up in care, but my mother had been diagnosed with Stage 4 cancer at the time, and I had my hands full sorting things out for her while overseeing my father’s care at his facility, and managing my own home and work life.
The origin of her cancer proved difficult to pinpoint, and following a couple of biopsy procedures, the interventional radiologist told me that he thought it might have been either the oesophagus or the stomach. Whatever the origin of her cancer, or its cause, there was little hope for recovery.
The signs were there
Perhaps I should have paid closer attention to what my aging parents were doing to manage their health. On the other hand, they were usually not particularly receptive to any suggestions I made that involved the slightest disruption to their daily routine.
The decline of my father’s cognitive abilities was obvious, and my mother became an expert at covering up for the strange behaviours I observed. He would be out for hours on his walks because he couldn’t find his way back home, leaving him feeling distressed after his outings. Use of the television remote became such an issue that my parents bought a new television thinking theirs was faulty. When finding a channel on the new television proved to be as difficult, they blamed the salesperson from the furniture store for selling them a defective unit.
Even my mother’s battle with cancer might have been easier to bear had she reported her back pain when it started. For years, she sat against a heating pad for pain relief, and she never reported the problem at her annual appointments with her family physician. Why she didn’t, remains a mystery.
My mother started taking Lipitor when she reached her mid-70s. It was prescribed after blood work revealed that her cholesterol level was slightly elevated. She claimed that her doctor had not explained how she could manage her condition by changing some of her eating habits. I found that hard to believe. It’s more likely that she didn’t understand enough about healthy nutrition to consider any of the doctor’s advice. As an example, when I suggested removing the skin off chicken before cooking it, my mom said she couldn’t throw away the best part! I think Lipitor gave her a false sense of security. The drug was taking care of her condition, therefore, no need to make any changes to her food prep and diet.
My father was diabetic. Yet, he continued to eat cream-filled and sugar cookies every day for his afternoon and evening snacks. It’s not like he didn’t have other options because I baked an ample supply of heart-smart treats for him every week. My mother never liked desserts or cookies, so the healthier alternatives were for his enjoyment alone.
I’d also purchased several cookbooks of quick and easy recipes for people living with diabetes and conditions of elevated cholesterol. When I asked my mom if she had tried any new recipes, she would say that she couldn’t with my father around. She claimed that if he talked to her while she was cooking, she’d forget an ingredient, and the result would be disastrous. To further support her reasoning for not trying anything new, she’d tell me that when I got to her age, I would see how easy it is to forget things.
How I hated it when my mother said things like that to me. I never had a good comeback, and it also made me wonder if I would become as reluctant to change my ways as I got older. Of course, I took a completely different approach to healthy nutrition decades ago, and luckily for my husband and me, the benefits have been numerous. Given this, I suppose I’m just like my mother, because now that I’m set in my ways about eating healthily, I know I might be as reluctant as she was to make changes.
Outsmarting my parents
It was a real challenge trying to get my parents to change their habits before they both became seriously ill. I couldn’t understand why they wouldn’t consider alternatives to help them live longer, but there was one time when I managed the impossible.
One day, when I asked my father about a new drug he was taking, he explained that Atacand had been prescribed to help him stay calm, and relieve him from stress affecting his blood pressure. My mom volunteered that she didn’t know why he was given that drug since she was the one with all the stress! She added that because my father was on this drug, their medical insurance cost them a lot more to visit with my brother in Florida.
That set off an alarm bell for me, and later that day, I did a bit of research on the adverse effects of Atacand. Some studies showed that it could lead to heart rate and rhythm disorders, respiratory complications, vertigo, gastrointestinal disorders as well as clotting and other problems.
I explained this to my parents, and the cheaper travel insurance rate was reinstated once my father stopped taking the drug, and a less risky alternative was prescribed. My mother actually came up with a few good suggestions to help him remain calm, and eventually his blood pressure regulated itself.
There are many serious health conditions for which prescribed drugs can be helpful, and in some cases, life-saving. Nevertheless, when seniors are prescribed medications with serious side effects and risks, tests should be administered to justify the need, and patients should be monitored closely for any potential reactions. And, if tests show that a condition is no longer of concern, shouldn’t they be weaned off the drug instead of being left on it indefinitely?
Getting involved
Years ago, I talked to Lisa Van Bussel, a geriatric psychiatrist based in London, Ontario, to ask if she had any advice on how baby boomers could help their aging parents make better decisions about their drugs.
Dr. Van Bussel said that ‘when children of older adults have questions and concerns about their parents’ prescriptions, over-the-counter and herbal drug use, they should consider going with them to their next doctor’s appointment, or consult a pharmacist where their drugs are dispensed. Your parents may not feel comfortable asking why medications are stopped, started or used. These health care professionals can answer questions about common side effects, drug interactions, and how medications are metabolized.’ Dr. Van Bussel also stressed that senior patients should not stop or switch prescribed medications without consulting their doctor.
That sounded like a great plan to me. I doubted that my parents would be willing to have me accompany them to their medical appointments, but much to my surprise, they were grateful for my involvement. That responsibility soon became another regular task for me, one that I regretted not having undertaken sooner.
Planning ahead
If there is one important thing I learned from caregiving for my late parents, it was the need to plan ahead for the future. We all need a plan, supplementary health insurance, as well as savings to make sure that we get the best possible care in our old age.
Elders facing a health crisis generally don’t want to become a burden to anyone in their family. Most want to live independently for as long as they can. But, in order for that to happen, provisions have to be made.
Wills and Power of Attorney documents for personal health and financial care plans don’t have to be complicated; you just need to have such documents in order before something happens.
Cherishing the memories
Role reversal between children and their older parents has its challenges, but it can also lead to good times and fond memories. I enjoyed outings with my mother when she was able throughout the year before her passing. I also enjoyed painting landscapes with my father at his care facility, bringing in hot meals for him and his best friend, and going out for coffee and shopping every Saturday morning.
Every time I helped him get in the passenger seat of my five-year-old car, he would tell me how he liked my ‘new’ car, and once we got going, he would tell me how well it handled the road. At one point, I stopped correcting him about my used car, the same one he had been driven in the week before, and agreed with him about how new it was and how smooth the drive.
When it became clear that my father needed better care than his long-term care facility could provide, I made inquiries about a move to another home, and a social worker became involved as part of the process.
I was not allowed to be present for her interview with him, and of course, I was anxious to hear from her afterwards. My father had never been the type of parent who would openly praise his children, and because he suffered from dementia, who knew what he might say during an important interview?
The social worker called me shortly after her meeting with him to say they had enjoyed a wonderful chat. She told me that when she asked him which facility he would like to move to, he told her he would go wherever his daughter decided he needed to go. Then she said that his comment was very complimentary to me as it showed how completely safe he felt regarding any decision I made on his behalf.
The social worker’s call on that day made me feel especially proud. It also confirmed, at least in my mind, that I had done the best job I could by my parents, and these days, I have the good memories to prove it.
Both my mother and father passed away in a palliative care centre where their end-of-life needs were met with the utmost of compassion and professionalism. Their memory continues to be a blessing.
Lise Cloutier-Steele is an Ottawa writer and the author of the 2025 Edition of There’s No Place Like Home: A guide to help caregivers manage the long-term care experience, available from www.ottawacaregiver.com.
This article appeared originally HERE.
