“For ten years I was responsible for my parents’ care upon their emigration from the UK. My mother was diagnosed with a progressive brain disorder and my father with emphysema, and later Pick’s, a type of Alzheimer’s disease. At first, it was easy. I settled them in a senior apartment complex with all the support they needed. I helped my mother select a scooter, wheelchair, walker and bathing aids. Then, as their diseases progressed, I sought the assistance of home care. Soon, I had to take over their financial affairs. Finally I was pressured into relocating them to a nursing home. I was now supporting their total care. There were many occasions when I felt completely alone with no help from the healthcare system. As a result, I truly understand the overwhelming pressures of care giving, balancing the responsibilities of home and work and the emotional strain that accompanies the coordination of care over a prolonged time.”
– Carol Edwards SRN, RN, ALCA
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My family first contacted Carol Edwards last November, when our 84-year-old mother fell ill and was admitted to the Toronto General Hospital with complication from what seemed to be a severe cold that she caught from my brother. Carol was recommended to us by one of my sister’s friends, whose family had used her services and were impressed with her skills and expertise.
We asked Carol to oversee our mother’s care in the hospital, as it seemed that the doctors there could not find any specific cause for her precipitous decline, and were preparing us for the “worst.” It should be mentioned that my mother suffers from Alzheimer’s disease. This severely impaired her ability to speak for herself at the hospital, to communicate to the hospital staff how she was feeling, and which also impeded her recovery in that to a large extent she resists treatment, there and at home, that might help her.
From the moment Carol got involved, she had extra external caregivers come in on a 24-hour basis to ensure that my mother received the best possible care and attention. Carol personally stood up for my Mother’s rights to proper care from the hospital nursing staff and doctors, yet not in a confrontational manner.
A few days into her stay, my mother was finally diagnosed with viral meningitis, which thankfully resolved itself within the next 10 days. This left my mother in an extremely weakened state, even after the infection was resolved. However, the hospital’s doctors still required Carol’s coaxing to see that my mother was brought back to sufficient strength to be able to leave the hospital in a reasonably self-sufficient state of health. It was only due to Carol’s coaxing that a speech and language technician was brought in to ensure my mother could swallow even minced food properly, as she was having difficulty in her recovery period doing that, and so was unable to eat solid foods until the end of her stay. Carol had a dietitian assigned to the case, who was instructed to count calories and ensure that my mother received sufficient nutrition on a daily basis. She also had a geriatrician brought in to assess my mother’s mental status and who did adjust her medications to give her the best chance of coming out of the hospital in good enough condition to return to her own home rather than a nursing home. (It should be noted that when we first requested that a geriatrician be called in the ward doctors resisted it, saying that they deal with elderly patients all the time, and don’t need any special assistance. However, Carol persisted, and the ward doctors eventually gave in.)
When my mother returned to her home after being in the hospital for three weeks, Carol set up 24/7 caregiving for her at home, and carried out personal visits on an almost-daily basis to ensure that my mother was receiving proper care from the caregivers. At the beginning, she also ordered, on a rental or purchase basis as required, special equipment for Mom’s home to assist her in the bathroom, etc. As well, Carol is constantly “fine-tuning” her staff to my mother’s current requirements, teaching the caregivers how to get the maximum cooperation from my mother, and replacing those caregivers who are not the right “fit.”
Unfortunately, my mother tripped and fell in her home 5 weeks ago and broke her right arm just below the shoulder joint. That kind of break could be put in a cast, and her recovery so far is only partial as she refuses to wear her sling, or do the doctor’s recommended exercises to try to prevent her shoulder from “freezing” during the 6-to-12-week recovery period.
Carol, and her partner Anne, have been tireless and meticulous in their efforts to ensure that my mother is properly cared for. Carol attends all visits to my mother’s various doctors with us, so that she hears first hand what the current situation is and what the doctors recommend. Being an RN, she can also better communicate to the doctors what is going on with my mother medically as opposed to what we, her children, can tell them. Also, she is in constant contact with the caregivers, and they act as Carol’s eyes and ears when she is not there, so she gets a 24-hour perspective of how my mother is doing, how she is eating, her mood swings, her sleep patterns, her bowel and urinary functions, etc. She makes sure my mother’s blood pressure is checked regularly, and that the requisitioned blood tests are done on their scheduled basis, in my mother’s home.
Long story short, Carol was instrumental in the basic recovery of my mother from an illness that we thought was going to take her from us, and even though it turned out to be identifiable and self-curing, it so weakened my mother that I truly feel that without Carol’s help in the hospital there is no way my mother could have returned to her own home. Up until the time she broke her arm, my mother was thriving under Carol’s care at home, and recovered to the point where she was in better physical health than I had seen in the past two years. In regards to her mental health, unfortunately, the Alzheimer’s keeps progressing. Nonetheless, Carol and her team are much more effective than we were, as her family, in seeing that she takes her medications, etc.
The only thing of concern to us is that this level of care is expensive, running generally well over $20,000 per month for the 24/7 caregivers and Carol’s fees. However, we do want to keep our mother in her own home for as long as possible, as that is absolutely what she wants, and what the doctors recommend. Carol is working with us to control the expense factor, and is sympathetic with our concerns in that regard.
Carol also works with her partner, Anne, who is a delightful, compassionate person, and who is certainly able to step in when Carol is unavailable (which is a rare circumstance).
As a further note, Carol is used to the “family dynamics” that naturally happen in these situations amongst the patient’s family, and seems quite diplomatic in the handling of the various viewpoints and emotional responses of the family members involved.
If we could go back in time with the knowledge that we have today, we would absolutely hire Carol again.