It’s been a while since I last updated this blog series and definitely longer than I planned. As usual, life intervened while I was making other plans.
Originally, this last posting was supposed to be an objective look at legal issues related to advance care planning such as the Supreme Court decision in Carter and related statutory provisions. The progression of health care issues for my mother has changed my focus substantially with the emphasis now being on personal considerations. What we expect from our health care system, especially in the face of serious terminal illness, and what is delivered are two very different things in many cases. It’s important for people to understand and prepare for this discrepancy. For what it’s worth, the following is an overview of our experience.
Not long after I posted part 3 of this blog series, my mother was finally assessed by CCAC for long term care placement and, surprise surprise, she qualified instantly albeit on the slow list. Now all I had to do was figure out how to care for my mom and myself as well as run a law practice, over the next 12-24 months, in a way that did not leave my mom alone for more than a couple of hours and did not result in crippling expense.
Just as all of this was unfolding, we got the first glimpse of what was really happening with my mom’s health. An MRI that was done in late May as part of the suspected mini-stroke follow up revealed a mass in my mother’s brain. Later I discovered that the original CT scan showed the beginnings of a mass but had been missed.
This latest discovery set off another round of medical appointments. My mom was quickly scheduled to see a neurosurgeon who indicated that the mass was likely a malignant tumour. Unfortunately, given how my mom was impacted by the tumour, surgery was not a realistic option. Instead, the surgeon recommended having a biopsy done to confirm the type of tumour and keep open the possibility of radiation.
My mom was given a couple of days to decide about the biopsy due to the rapid advancement of the tumour since the March CT scan. This was about the third week of June 2015 and, by the end of that week, my mom had decided to proceed with the biopsy as she was determined to pursue radiation. Within a few days my mom was given a surgery date for July 6, 2015 and her pre-op appointment date a few days prior.
We did not even have 2 weeks to absorb what was happening and plan some quality time together but we did the best we could with the time available. My mom and I had a couple of meals out and watched some movies on demand. I remember sitting on the back deck with her once or twice admiring the garden we had built together but many parts of that time are a blur.
On Sunday July 5, 2015, I took my mom to Hamilton as her surgery was being performed there. We checked in to our hotel and had a nice meal together. On Monday July 6, I took my mom to the hospital and waited the longest few hours of my life until she was out of surgery and doing okay. Late the next day, my mom was transported to a Waterloo Region hospital to be closer to home while we sorted out her care and waited for the biopsy results.
I wish I could say that life got easier from here but it did not and I was soon plunged back into conflict with CCAC. Their ineffectiveness, as well as chronic problems in long term care, resulted in my mother never seeing our home again. It is what she and I wanted more than anything, if even for one afternoon, so we could have a tiny amount of final quality mother-daughter time before the end got closer. It just was not meant to be I guess. My mother died in long term care on January 28, 2016. Mercifully, I was with her at the end.
Between June of 2015, when the tumour was “discovered” and January 2016, I scarcely had any peace with my mother. There were so many problems I never seemed to be able to catch my breath and just spend quiet time with her. As a result, I am haunted by thoughts about what I should have done or would have done, on the personal front, if my mother had received competent care. Those stolen moments are unforgivable.
The whole story of what happened following the biopsy and ending in January 2016 is far too long to tell here. However, an overview is useful to illustrate the importance reforming our health care system so that this situation does not repeat itself for any other family.
1. The KW hospital insisted I shower my mother because their staff did not have time. This put my frail mother and me at considerable risk but I had no choice. She was there for over three (3) weeks because of CCACs conduct and not because it was in the best interests of my mother.
2. When my mother’s biopsy results were received, they were given to some doctor at the hospital I never met. It took him several days to contact me. When we did finally connect, I was visiting my mother so I was forced to take the call on the hospital phone at the busy nursing station. I could barely hear him tell me that the worst was confirmed: my mother had an aggressive malignant brain tumour. However, since he was not a specialist, he would not give me a prognosis or indicate if radiation was an option. Perfect. I had to go tell my mom she was likely going to die soon but I had no idea how long or whether radiation might be an option. We had to wait until the following week, and a trip to the cancer clinic in Hamilton, to get the prognosis.
As a personal note, I cannot begin to describe what it is like to be told terrible news like this over the phone by someone you have never met. The next time a health care professional has to give out a terminal diagnosis about someone I love, I want them to look me in the eye.
3. The clinic in Hamilton was impressive. They truly embodied a holistic approach with a team of about 10 doctors evaluating my mother’s case. In the end, all that intellect was powerless. The tumour was too advanced. My mother would not outlive the side effects of radiation so they recommended against it. I had to ask for the prognosis and they reluctantly gave my mom 3-4 months with 6 months at the outside.
4. The KW hospital delegated to CCAC responsibility for my mother’s discharge planning. Initially they tried to just turf my mother home with minimal supports. This was completely unsafe for my mother so I had no choice but to stand my ground and demand urgent LTC placement. CCAC repeatedly refused to complete the assessment for urgent placement while my mother was in the hospital notwithstanding that there was no legal basis for the refusal. We went around in circles on this for days. Initially they were waiting for the prognosis from Hamilton and told me that if it was under 6 months my mom automatically would be slated for hospice. My mother and I refused such a suggestion and it would not matter anyway. You cannot get into hospice in KW until you are down to less than 30 days.
5. CCAC insisted that they could only do an assessment for urgent placement once my mother was out of hospital at least 60 days – called “Home First” or “Bridge to Home” which are CCAC policies but not mandated by law. After much arguing, and some contemplation of taking them to court, I relented and asked them for assistance in finding appropriate assisted living. All they did was give me a list of facilities and tell me to figure it out myself. Initially I thought I found a good one until I discovered that they charge for every little thing like helping my mom find the dining room and get back to her room. I found this offensive and discriminatory against someone with a serious cognitive impairment. The extra care was going to cost about $2000 month on top of the base cost even with CCAC supports in place. At this point, I had been told repeatedly that even if my mother was given urgent status she would probably die before getting into LTC due to the long waiting lists. As a result, I kept looking and found a much more civilized facility although a little older. I should have been working or spending time with my mom rather than doing CCAC’s job.
6. My mom moved into assisted living with 4 hours a day of support from CCAC on July 30, 2015. Almost immediately the problems started – with the care through CCAC not the facility. People were not showing up, they refused to follow the care plan such as making my frail mom shower alone rather than having help, they left early, they put her to bed at 6:30 at night when she wanted to watch entertainment in the dining room, and the list goes on. As a result, I had to lodge complaints and even met with senior members of CCAC and the service provider. Again, I should have been working or spending time with my mom instead of doing CCAC’s job.
7. As this new battle with CCAC raged on, I ended up talking to one of their internal coordinators to try to find LTC space with a shorter list. This person told me the urgent placement assessment could be done within 30 days of leaving hospital. A subsequent discussion with yet another person from CCAC indicated it could be done within a few days of leaving the hospital. Three people and three different answers – typical CCAC. Interestingly, the original time frame of 60 days came from the CEO of the local CCAC who should know the right answer which is that it can be done from the hospital in the first place. In any event, I got the assessment scheduled for approximately August 12 or 13 rather than late September as originally predicted.
8. All of the time and effort I put into fighting with CCAC was wasted. On about August 11, 2015 we got a bed offer for one of my mother’s LTC choices as a matter of course from the initial assessment back in June. I thought this would finally give us some peace but I could not have been more wrong. I know LTC is not perfect but there was no way my mom could be at home safely without substantial costly services. Little did I know I was truly choosing between two evils.
9. My mother moved into the first LTC facility on August 13, 2015 and appeared to be adjusting well as she did to the hospital and assisted living. At this stage, she still had some independence. She was walking with a walker and feeding herself most times as well as being able to communicate with me somewhat.
10. Within a few days of arriving at the first LTC facility, my mom’s health collapsed. I arrived on the Tuesday morning to find her in the dining room alone at 10 am in her housecoat looking all wild. No one called me to report a problem. More importantly, I discovered later that no one called the doctor. Staff dismissed the problem with no medical consult. My mother could barely walk or talk. She was markedly altered from just days before. It was horrifying.
11. This was the beginning of the nightmare. I had to practically live at the LTC facility to oversee my mother’s care and contracted for 9 hours per week of private assistance to try to ensure my mom’s comfort and wellbeing with a cost of about $1000 per month. I had numerous meetings with the director of nursing to provide training on how to communicate with my mother and even how to physically handle her to avoid hurting her injured arm. Staff were yanking my mother by her arms and wrists even though they knew about the rotator cuff injury. They would even drag her up her bed by her shoulders rather than using a transfer sheet. I had to be at the facility on Tues and Fri mornings for shower time and sit in the shower area or my mom would not cooperate out of fear of being handled roughly.
Medication was improperly administered resulting in substantial abdominal pain to my mother that would cause her to scream. There was improper incontinence management that resulted in soars spreading to the peri-anal area on top of raging hemorrhoids. There was improper maintenance of bowel routines causing extreme pain on top of the hemorrhoids. I had to chase down nursing staff almost every day to get them to manually assist my mom with her BMs. The PSWs did not bother and would even leave my mom alone slumped on the toilet at risk of falling. One night I had to send my mom to the ER because of ongoing fevers that popped up every few days and could not be resolved and well as the recurring abdominal pain that caused screaming.
The doctor overseeing my mom’s care at the facility admitted she needed more help but said he only got paid to see people once a month and he was too busy with the other facility he over saw in addition to his own practice. He repeatedly refused to offer appropriate pain mediation options and consistently tried to bully me into authorizing narcotic pain meds which were not warranted at the time and to which my mother was not in agreement. One night, nursing staff gave my mother a dose of the narcotic against my explicit instructions a few hours earlier.
All my mom needed was help to have a BM. This resolved the abdominal pain almost every time. Narcotics just compound that sort of problem. The day after the unauthorized dose, I received an urgent call from staff to come right away to assist with my mom as she was hanging off the edge of her bed and refusing all care, food and fluids. When I got there, my mom looked like a wild thing. After I got her settled, staff advised me of the narcotic administration during the night. Now it made sense. My mother was stoned which proved I was right about the narcotic being inappropriate.
12. During the first few weeks at the first LTC, I held on to hope that somehow my mom would level off and be well enough to come home for one or two afternoons – with some assistance. We almost made it. After the initial decline in health, there was a gradual and partial rebound. I stopped in on my way home from the office on a Friday afternoon and found my mom doing better than expected. I asked her if she felt well enough to visit our house the next day and she said yes. I checked with nursing staff and they agreed. I was over the moon. I left with a spring in my step and went to the grocery store to buy something nice to cook for my mom the next day. When I went to pick up my mother the next morning around 10:30, she was bedridden and barely able to talk or walk again.
I had left a voice mail message in my mom’s home area that morning to remind staff I was coming and to let me know if there was any change so I could be prepared. No one called me. I arrived full of hope only to be dashed. My mom was in agony most of the day. It was not the tumour which fortunately never caused noticeable pain. The pain was abdominal. After supper I finally demanded that she be sent to the hospital. I was there until 5:30 am and, at this point, I knew my mom would never come home again for one last visit.
13. The nightmare continued through the weeks until we got a bed offer for my mom’s number one LTC choice. It was a facility that held much promise so I was excited. I talked to my mom over a few days to confirm her agreement to move. The initial move went well and the first week was good. This was a big relief because I was scheduled to be away on a mediation training course the following week. It was nice to see my mom happier and more comfortable after the move so I went away reasonably confident. When I got back, I discovered that my trust had been shattered so I terminated their pre-authorized payment plan. Following that, I spent several weeks dealing with a variety of problems at length and finally had things reasonably under control by the Christmas holidays.
14. Unfortunately, temp staff were scheduled over the holidays and, on January 2, 2016, virtually all of the problems that had been resolved resurfaced in one day. I was devastated especially since it appeared that my mother may have been denied food and fluids the day before due to the temp PSW not bothering to review my mom’s care plan or ask for assistance to understand her care needs. At that point, she could not feed herself or even ask for help. She was totally dependent on others which was clearly indicated in the care plan and known to regular staff. I dared to take a day off to look after myself and my mother suffered for it. What a wonderful feeling.
15. The first LTC angered, frightened and exhausted me. The second LTC broke my heart on top of angering and exhausting me. I’m just one person and the only person who was available to assist my mother. I gave up virtually all hope for my own well-being and that of my law practice as the problems mounted at the LTC facilities. I thought things were finally coming together as we approached the outside window of my mother’s prognosis but that was not the case and I grew more frantic thinking I would not even get a few days of peace to say good-bye. Even with virtually non-stop monitoring, I could not get basic competent care for my mother and there was no sign of palliative care until the last 2 weeks even though she went into LTC right from the start as a palliative resident.
16. A few days after the holidays, I received a callous voice mail inquiring about my mom’s outstanding invoices. There was no inquiry about her well-being or the status of past problems. I went from wanting to quit being a lawyer to the angriest lawyer alive in less than 30 seconds. In that instant, I resolved to find some way to advocate meaningfully on behalf of seniors. I also gave up the last ounce of trust I had and spent even more time at the facility.
I have not figured out exactly what my advocacy activities will look like and I recognize that I cannot do everything. As Henry David Thoreau has been quoted “One is not born into the world to do everything but to do something.” Now all I need to do is find my something.
Too many people are carrying the burden of caring for loved ones with inadequate resources. It puts their health, jobs and savings at risk. It’s time for proper recognition of the burden caregivers are carrying. More importantly, it’s time for meaningful assistance so they no longer have to carry that heavy burden.