Dad is 86 and
Mom is 80. With some family and community supports, they lived indepen-dently in
a retirement community. They compensated for each other's weaknesses. Mom has dementia. Dad was cognitively sharp, enjoying time on his computer and reading. But he had a number of health challenges, including two heart bypass surgeries, mild congestive heart failure, back problems due to collapsed vertebrae, and ulcerative colitis. He's also almost completely deaf.
On the morning of May 18, 2009, Dad got up early, as usual, and made himself some breakfast. Mom was still asleep. At some point after eating, Dad had a massive hemorrhagic stroke. He fell to the floor and then had a heart attack.
We don't know how long Dad lay on the floor. We do know that when Mom came out of the bedroom, she found him semi-conscious in a pool of urine and vomit. She couldn't make sense of what she was seeing. She pressed the speed-dial button on her telephone to reach my cell phone.
I was away on work. I helped found the Legacy Project, a multigenerational, big-picture learning project. I had just finished a presentation to a group of energetic fourth and fifth graders at a school in Cincinnati. When my cell phone rang, all Mom could get out was, "Dad is on the floor."
I told her to push the panic button on the kitchen counter. And I started driving home.
During that drive back, the Emergency doctor called with his question. I pulled into a McDonald's parking lot off the US interstate and had one of the most difficult phone calls of my life. The doctor explained what had happened to my father. He was also candid in telling me that he didn't think Dad would last the 10 hours it would take me to get back home. I later learned from the ICU nurse that the phone call to me was one of the most difficult this young doctor had to make in his career so far.
I got to the ICU at 10:00 pm. Dad had machines all around him, wires attached to his chest, and tubes in his arm and mouth. He looked so small and so frail. To the doctors and nurses, he probably just looked like an old man. He certainly didn't look like the man I kissed goodbye before I left on my business trip a day earlier. But he did still look like my father. His precisely manicured hands – he had been an architect and did everything precisely, even his fingernails – were reassuring. I held his hand and talked to him. He didn't have his hearing aid, so I don't know how much he heard. But as I talked to him, a couple of tears spilled down one of his cheeks.
Everyone expected Dad to die. Mom couldn't quite follow exactly what that meant.
For the first week, we made funeral arrangements. I kept thinking how appalled Dad would be at how expensive everything was. Raised in the Depression, he liked to do things frugally.
Then the neurologist called us in for a meeting. "This is a different discussion than the one we thought we'd be having," he started. My dad would live – but with serious deficits.
When we'd spoken with my parents about the end of their life, we had talked about quality of life and a death with dignity. It all seemed a gray area now. The hospital had not engaged in any exceptional measures, but they had saved Dad – with some help from his strong spirit. Modern medicine had done its job, but now the system was left to pick up the pieces. And the system didn't know what to do with Dad.
In the weeks that followed, it became clear to me that Dad was still Dad. Cognitively, he was fairly intact. He understood what was happening. He could read. I could see his personality. But at some moments he was mentally clearer than others. He can make sounds, but is unable to speak. The aphasia often limits his ability to even give yes/no answers accurately. He has problems swallowing and can only take in thickened liquids fed to him slowly. He has significant weakness on the right side (it took me awhile to figure out why the doctors kept asking whether he's right-handed) and can't move on his own, is incontinent and bedridden.
Even if Dad can't speak, he's creative in his gestures. I also understand him because I know him and how he thinks. The one thing Dad was able to communicate clearly, with a left-handed hitchhiker gesture: he wanted to go home.
At first, the hospital spoke to us about a nursing home.
It was assumed that's where he should go. But given his high needs, placement would be difficult and the wait would be long. Because he can't speak or move, he's most vulnerable. And I have concerns about many of the practices I've seen in nursing homes. For me, putting him in a nursing home was equivalent to letting your toddler play in the street – there's a high likelihood of a bad outcome.
I wanted rehab to help Dad regain as much function as possible. The hospital suggested slow-stream rehab at a local facility. But my research turned up some worrisome stories about the facility. And given all Dad's medical issues and needs, I feared we would end up moving in with him because he wouldn't get the care he needed.
The hospital was in a hurry to discharge him – somewhere. He was stable and they needed the bed. The only thing that bought us some time was that Dad's colitis flared because he was off all his meds. Initially, the hospital insisted it was C. difficile, which meant my dad's room suddenly looked like a haz-mat zone. Eventually, it was confirmed that it was colitis. My father was in the hospital for over two months – in the complex and palliative care ward.
That ward was truly depressing. I hated walking into the hospital every day. We spent 16-hour days at the hospital. My husband, brother, and I traded off shifts. I made friends with a young woman whose father was dying of cancer. I exchanged daily polite conversation with a man who was there supporting his brother whose wife was dying. I held a sobbing woman in my arms as she was told her husband was about to die. No family member in that ward thought it was a good way to die. Many of the staff were caring, but overworked. With our current laws and medical system, I did not see death with dignity.
Dad wanted to go home. And I also had to think about what to do with Mom. I had several sleepless nights, and then went for a long walk.
This personal situation cut to the core of what I do. The Legacy Project is a big-picture project that's very much about bringing meaning to the life course. We help people with growing up and growing old, the value and meaning of aging, and the importance of intergenerational connections to both young and old.
It was time to walk my talk. We told the hospital we were taking Dad home. He and Mom would come to live with us.
"No one does this," was the comment. A nurse told us she didn't think we could take care of Dad. The doctor told us she didn't think home was the best place for my father. I asked her for a better suggestion.
We knew it would be difficult. The best advice I received was from a compassionate occupational therapist at the hospital: "Make a decision, and then don't second guess yourself." I haven't.
We have a core family team of myself, my husband, and my brother. My dad has some veterans coverage. And the local Community Care Access Centre (CCAC) assured us that the government has a commitment to helping elders stay in the community. We were told there was a new Stay At Home program under which frail and high-needs elders were supposed to be eligible for a certain number of hours per week of homecare from a personal support worker (PSW).
We needed an appropriate space if we were going to provide the level of care my parents require. As part of my work on the Legacy Center, I was aware of transgenerational design and it was to be part of an expansion. Transgenerational design involves making spaces usable by all ages, so that people can age in place and spaces can accommodate disabilities at any age, whether it's an elder in a wheelchair or a teenager with a broken leg. Much of this kind of design is common sense. For example, why do they insist on making the entry to a bathroom around 24 inches wide? That's not enough to accommodate a wheelchair.
We did a very quick and very stressful renovation, while selling my parents' existing home and packing up all their belongings and taking care of my father who was still in the hospital.
We researched everything we could about transgenerational design, as well as creating safe, comforting spaces for people with dementia. We designed a suite for my mother, with her own bathroom and separate parts of the room for sleeping, sitting, and eating.
My father's room had to be outfitted with everything he needed for his care, including a ceiling lift because he can't move on his own. He also specified the personal things he wanted around him – like his hard hat from his construction sites so many years ago.
We opened up a closet into a small existing bathroom to create a wheelchair accessible bathroom with a roll-in shower.
It was all an exhausting whirlwind. Once the renovating and moving was done, we hoped it would get better. It didn't.
The expected support from CCAC has turned into a bureaucratic nightmare. The case managers are generally former social workers and nurses. But once they become a case manager and must answer to the demands of the system, it's almost as if they leave their soul at the door. We've had three different case managers so far, and each time we've had to start from the beginning. When they visit every three months, it isn't about the living conditions, Mom and Dad's health, or even how we're coping. It's about putting numbers into a computer program and cutting back every hour they can. All we hear about is that CCAC is over budget and there's no more support from the government. The last time the case manager visited, she didn't even ask to actually see Mom and Dad.
The rhetoric about aging in place and keeping elders in the community hasn't matched the reality. We had to fight for the homecare hours per week that we currently have, and are under constant threat of those hours being reduced.
We're "on duty" 24/7. We're saving the government money and keeping two high-needs nursing home beds open for other elders. What we need is the help promised at the hospital when we made one of the biggest decisions of our lives.
Even on the hardest days, we're not sorry we made this decision. This is one of the most difficult things I've ever done – and one of the most rewarding. My relationship with my parents has grown richer, and I've learned many things about myself.
At the same time, every day challenges what I thought
I knew. Our resources are stretched to their limit. I haven't been able to concentrate on my work full-time for over a year. Our bodies and minds are all too often exhausted. Sometimes the emotion of it all is just too much. But the heart remains strong.
As families and as a society, we have to rethink how we handle aging. My parents worked hard in their younger years, paid their taxes, raised their children, and were good citizens. Why shouldn't a frail elder who is sick, confused, tired, and scared have the right to be in familiar surroundings and have the comforts of their own home? Shouldn't we organize the necessary supports to make these simple things the basic human rights of old age?
We don't have enough room in nursing homes and we aren't providing the support many elders need to remain at home. We might as well send them north in search of an ice flow – though global warming (perhaps the quintessential intergenerational legacy challenge) is making even that less of an option.
We need more quality care options, more creative approaches to providing in-home community support (like roving doctors), and more opportunities for intergen-erational connections that help keep the spirit alive.
My parents have a quality of life with us they wouldn't have isolated in a care facility. Mom gets lots of hugs and is less depressed and aggressive since she moved in with us. We keep her in a simple, familiar routine. She "cleans" and "cooks" in the morning, which mimics her routine through her life. She watches old movies in the afternoon. She enjoys looking out the window at the birds and through old photos. She has visitors, and goes out when the weather is warm. She smiles and jokes with us, often covering her confusion with good humor. She feels safe and loved.
We do an hour of physiotherapy with Dad every day. When we're not changing his adult diaper (we call it a pad) or feeding him thickened liquids with a teaspoon (taking an hour for each meal), we wander into his room and just hold his hand. He naps when he wants. We record his favourite TV shows – baseball, Golden Girls, and Price Is Right – so that he can watch them when he's alert. And he cheered right along with my husband and brother when they all watched the gold medal hockey game at the 2010 Winter Olympics. He'd have none of these things in a nursing home.
It's not all smiles and hugs. Dad gets grumpy, angry, and frustrated. He yells – though we can't understand any of the words, I can make some guesses. Mom wanders, repeats herself endlessly, and will only eat very specific foods cooked in a very specific way and cut up into very small pieces. That's when we really feel exhausted – and most alone.
We've been offered respite, but it consists of sending my parents to a nursing home for a week or two. Why would I want to disrupt them from the home and routine they know? And there are real dangers for the elder. One care worker told me about a client with dementia. The family put her in a nursing home for a week as respite. She went in with dementia, and came out with dementia and a broken arm – that will have to remain in a sling for the rest of her life because at her age with her bone density it will never heal properly.
For me, this is about living a life with meaning and having a death with dignity. The system isn't set up to accommodate either. As a society, we fear aging and deny death. There are moral and ethical issues here, and financial choices to be made. But if you want to bring this down to the most selfish of levels, you need to ask yourself: where do I want to end up?
There have been bright lights, like the family doctor who makes house calls or the PSW who spends a little extra time even though it isn't covered. But these are a few individuals doing the right thing. The system has to do the right thing.
Mom and Dad celebrate their 50th wedding anniversary on October 15, 2010. We don't know how much longer Mom will remember us or Dad. We know Dad's health is failing and he's on borrowed time. Our hope is to keep his spirit strong so he can make that big date with my mother.
The best gift I can give them both is to let our experience with their aging encourage others to rethink their parents' final years and their own aging.
EDITORIAL ENDNOTE: On July 10, 2010, the same day this article appeared in a local newspaper, Susan's father
Theodore (Ted) Bosak passed away. He died peacefully in his sleep, at home in his own bed, surrounded by his family, with dignity.