Thursday, April 12, 2018

A brother unites a family and inspires research

By Louise Kinross

Five siblings have created research scholarships in occupational science and therapy at the University of Toronto in honour of their brother Peter Rappolt. Peter (bottom centre), the youngest in the family at 57, has a developmental disability and severe, chronic mental illness. His brothers and sisters have worked together for decades to advocate for him in the health system.

The Peter Rappolt Family Scholarships for Research in Occupational Performance and Wellbeing are aimed at improving the lives of people with complex, intractable conditions. Peter’s sister Marg sits on Holland Bloorview’s board and chairs its business and audit committee. BLOOM spoke with Peter’s sister Susan, who is chair of U of T’s Department of Occupational Science and Occupational Therapy, about her experiences as a sibling.

BLOOM: It’s quite unusual that there would be five siblings who are all able to support their brother. Where does Peter currently live, and how do the five of you stay in contact with Peter and each other?

Susan Rappolt:
Peter is the youngest of the six of us and lives in Cambridge in a long-term care facility with a very high level of care. We all live in southern Ontario and are in reasonably close proximity. My sisters Marg and Gail are power of attorney for care and finances, and they’re frontline contacts with the nursing and support staff. We’ve hired workers to come in and take Peter out when he’s well enough to go for a drive and do activities.

My siblings are retired or semi-retired, and I’m the only one working full-time, so I visit on the weekends. We all text and e-mail after a visit with Pete, to keep everyone up to date on any swings in his abilities or mood.

This morning Marg visited and because Pete really likes picnics, Marg took him for an indoor picnic, because it was snowing. He’s had a slump these past few weeks and been pretty frail and psychotic, and in pain, so it was nice to hear that he’s feeling better. Marg sent out a photo of him eating lemon meringue pie and smiling.

BLOOM: How does Peter's mental illness affect him on a daily basis?

Susan Rappolt:
Pete’s had probably every diagnosis you can imagine. He is paranoid and hallucinates and is fearful and very vulnerable to psychotic visual and auditory images when he’s not well. The intensity and frequency of his psychosis has increased over the past 10 years. More often than not, he’s engaging with people who are villainous and threatening him. They’ve tried every medication, and nothing has been successful. It’s really hard to see him suffering. Sometimes we go in and he’ll see us, and he can’t pull himself out of it, but if I give him a hug he’ll start crying on my shoulder.

BLOOM: When did his mental illness start?

Susan Rappolt:
As a teenager and young adult. His primary diagnosis was developmental delay. So he has a dual diagnosis.

Pete has many cognitive strengths. He gets and makes jokes, and he has an amazing sensitivity and insight into human dynamics. He’s way more perceptive than other people in the room about how you’re feeling, and about how what someone says may affect others. He loves sports. In better days, he knew the names of hockey players and teams and followed hockey and baseball. When our kids were little he liked to do stuff with them and we’d have family gatherings. We’d go to the local diamond and the kids and Uncle Pete would play baseball.

BLOOM: Was your decision to become an occupational therapist influenced by Peter?

Susan Rappolt:
Yes, it really was. When I was 11 or 12 and Peter was six, I recognized his potential to do stuff that wasn’t being realized because he was very much protected. And he was smart enough to milk it. It did influence my thinking, and when I learned about the discipline of occupational therapy, it seemed like an obvious fit.

BLOOM: I read a piece on the U of T website where you talked about having to advocate for Peter in hospital when he wasn’t getting appropriate care.

Susan Rappolt:
Yes, that particular incident was horrible and it was outstanding, because we hadn’t faced that kind of discrimination in the health system otherwise. Pete wasn’t doing well and had an incident that looked like a small stroke. We got a message that he was on the acute-care side of the hospital and was being monitored, and would need to be kept quiet for a couple of days.

My sister and I went in and there was a nurse sitting there recording something, which I thought was odd. I asked ‘Is Pete eating? Is he drinking? How are things working here?’ And she said ‘no’ and put her eyes down. ‘So where’s the IV?’ I said. She said ‘No, there’s no IV.’ I knew what was happening then. ‘Okay, you start the IV right now,’ I said. No one had given a do not resuscitate order.

I know that our situation is unique in that we siblings probably have close to 10 post-secondary degrees, and lots of skill sets, and we all speak English. It’s so different for a single mom living in poverty. We’ve very lucky that we have all of these skills and I work in health care. You have to know the system to ask the right questions to get the right care.

BLOOM: How do you cope with seeing Peter distraught, and not being able to find something to treat his mental illness?

Susan Rappolt:
It’s really hard to see him suffer. We’ve been very lucky with our experience of the nursing care he receives and the community care workers. They’re lovely people who are so talented and skilled in trying to support him and soothe him. It is heartbreaking. But it’s not a sudden tragedy. We’ve watched his decline over the last years, and are coming to terms with the doctor’s projection that he would see a physical decline and probably an early death.

Although it’s not a good situation, we have turned over many stones and pushed as hard—and in as many places—as we can, so we know there aren’t other answers. We’re really dealing with palliation now.

BLOOM: Why did you decide to fund the scholarships in Peter’s name?

Susan Rappolt:
As a family, we know we can’t make big changes to Pete’s quality of life because of his intractable mental health condition. So we’re focused on providing him with whatever pleasure and support we can.

The focus of the awards is research to promote quality of life in individuals who have chronic, declining and, often, very complex needs. How can we bring joy or alleviate pain in a life that is otherwise pretty miserable?

There’s nothing more medicine can do, but perhaps we can do compensatory things with assistive technology, or social interventions, or by modifying an activity so a person can participate. Often it takes an occupational lens to parse that out. How can we intervene with the person, the occupation or the environment to help someone reach their goals and be happier?

BLOOM: I understand the first gift will fund a scholarship for a PhD student at the Rehabilitation Sciences Institute?

Susan Rappolt: Yes. The PhD part is endowed, and our first student should receive that in September. Our scientists in the RSI will supervise that student in the doctoral stream. The second gift creates a research fund for projects by students doing a master of science in occupational therapy.  
BLOOM: What advice would you offer other siblings who perhaps live at home with their parents, but are concerned about how they may support their brother or sister in the future?

Susan Rappolt:
It’s a very challenging scenario, and I don’t know of any families that experience it differently. Especially if the person is still residing at home, the family caregivers need support, in the same way that we’ve developed caregiver protocols in palliative care and stroke. I don’t think the same kind of attention has been paid to family caregivers of individuals with a dual diagnosis, like Peter. I’d like to raise awareness of this issue.