Caring for someone with Duchenne muscular dystrophy: ‘It’s so easy for caregivers to feel a sense of loss in identity’

The work of a caregiver is never easy and there should be better policies and broader programs in place to help support them, says Terrence Ho. SUPPLIED

After becoming a caregiver to his younger brother at age 10, and then his mother who was diagnosed with lung cancer, Terrence Ho has learned a lot about what it takes to survive caregiving.

For nearly 30 years, Terrence Ho has been a caregiver to his younger brother Torrance who lives with Duchenne muscular dystrophy. Decades ago, two of his uncles were also diagnosed with the rare genetic disorder that causes muscle degeneration.
And then a year before the start of the pandemic, the family suffered another health setback. His mother, who was the primary physical caregiver to Torrance was diagnosed with lung cancer. The family was devastated by the news. She struggled to come to terms with it and fell into suicidal depression. She was admitted in a psychiatric ward, where over the next five months, doctors tried several psychological interventions until they found one that stabilized her mental health. Terrence’s mother succumbed to cancer last year, leaving him fully in charge of his brother’s’ care.
In Canada, one in four people over the age of 15 is a caregiver, according to data published by The Canadian Centre for Caregiving Excellence, an organization that’s dedicated to providing support to caregivers. It is an initiative of the Azrieli Foundation, the largest non-corporate foundation in the country. Typically, caregivers provide at least 19 hours of care per week to family members, but a severe disability or a medical complexity can require additional support. The unpaid, unseen work of caregivers in Canada can push some people over the edge, leaving them feeling overwhelmed, exhausted, and completely alone.
Terrence sat down with Healthing and shared details about how growing up in a single-parent home for most of his life shaped his caregiving journey, the personal sacrifices and life choices he’s had to make along the way, and why he feels the federal government must step up to better support family caregivers across the country.
This interview has been edited for length and clarity.

How long have you been a caregiver?

I was 10 years old when I became a caregiver to my younger brother who was diagnosed with Duchenne muscular dystrophy at age six. I’m 38 years old now and I’m still that person for him. I have an even greater responsibility now that our mom is gone. When she was diagnosed with cancer in 2019, I became her caregiver as well.

What responsibilities did you take on for your mother and brother?

Growing up, I looked out for my brother. I walked him to and from school, and later, it was more about supporting our mom in providing the day-to-day care for my brother, such as helping to release pressure in his back and going to medical appointments with him. Over the past 10 years, I also took on the role of advocating for more support services for him. I’ve taken on more of a fatherly role, to help provide guidance and teach my brother how to adult — for example, how to manage his banking and how to better advocate for himself.
For our mom, it was more about understanding her cancer treatment plan and her emotional well-being. I was present at all her medical appointments, and I advocated on her behalf to help ensure that she was safe and received the treatment she needed at the hospital. I was the conduit between mom and our extended family, so that everyone stayed informed on what was happening. Communicating with family on a regular basis also provided an opportunity for them to contribute in different ways. I was able to coordinate a lot of family support by providing suggestions as to how they could help. Taking mom out for a walk, for example, or sending pictures and messages were just some of the ways that allowed them to be present in her cancer experience and support her through it.

Why did you feel like you needed to advocate for your mother?

When our mom fell into suicidal depression and was first admitted in a psychiatric ward, there were talks of discharging her soon after due to her previous and familial mental health history. I had to meet several times with the psychiatrist and the team overseeing her care there so I could voice the safety concerns I had for her and for our family.
Luckily, I felt heard and was grateful that they not only took my concerns into consideration, but that they tried several different treatments before they found one that worked. Our mom was discharged from the psychiatric ward five months after she was first admitted, when she was well enough to go home. I am grateful to those who cared for her during this time — they did a fantastic job.

Were you also involved in her end-of-life care?

When she received her prognosis, I helped her plan for her end-of-life wishes. Two or three years prior to mom’s diagnosis, I completed an end-of-life doula training. At the time, our family was going through a lot – my brother was experiencing some health challenges and we had started a medical assistance in dying (MAID) process.

Completing the end-of-life doula training was an eye-opening experience for me, and I learned how to talk about death and dying with both my brother and our mom. I was able to apply the knowledge from the training to help mom through that end-of-life phase.

That must have been hard, caring for both your brother and your mother.

It was difficult. Soon after our mom’s cancer diagnosis, we leaned on the Ontario Health Team , which is a local network of health-care professionals that provides coordinated care to patients and their families. They provided mental health support for mom, and they also offered personal support workers to help assist with her walking. As for me, I received grief counselling and psychotherapy support.

Did mental health support made you a better caregiver?

When I was caring for my brother, I joined a men’s support group and some other non-professional groups as well and they helped me for many years. But when mom was diagnosed with cancer, I realized that I needed more help. At that time, I also had a power of attorney responsibility for an elderly family member who was living with dementia, so I was managing and coordinating care for three people at once for about two years. It was intense, but getting support from a therapist who specifically works with caregivers and having the professional and non-professional support made a world of a difference for me. It helped ground me, and as a result, I was able to better navigate the ups and downs of caregiving.

How do you get through the challenging days?

Getting professional and non-professional support has been so helpful. Expressing my feelings, allowing, and acknowledging emotions, having an opportunity to talk to someone or even cry makes a big difference and is so helpful on those challenging days.

What advice do you have for someone who is just starting out on their caregiving journey?

Don’t be afraid to ask for help. At the beginning of my journey, I always felt that I was on my own. And because it’s my loved one, I felt like who else would take this on? But there are people and organizations out there that can help and can take a little bit off the plate of a caregiver.

You also work with a company that creates ‘smart’ wheelchairs.

The work that I’ve been doing over the past five or six years has been heavily influenced by my brother’s experience. When I met Dr. Pooja Viswanathan, the founder of Braze Mobility at a conference, my brother and I were running a not-for-profit organization, helping people with disabilities find work, and she was just starting out and setting up the company. We had value alignment and became quick friends. Two years ago, as the company started to expand, I joined their executive team. Braze Mobility offers technology that empowers people with a disability to move around safely and independently. It transforms any wheelchair into a “smart wheelchair” with the addition of blind spot sensors that help enhance the spatial awareness of someone in a wheelchair. My brother has been in a wheelchair for most of his life and he uses this technology.

What’s the toughest part of caregiving for you?

Finding my own identity within it all. Growing up, caregiving has always been a part of me, and over the years, I’ve made a lot of life choices to help ensure that my brother and mother are taken care of. I’ve had to sacrifice the things I wanted to do and that has been a big struggle for me. Even now in therapy, I continue to work through this. I’m learning how to differentiate between the different roles and identities in my life. It’s so easy for caregivers to feel a sense of loss in identity because they are caring for someone else. There’s always that feeling of guilt and shame if we think about ourselves and not the person we love and support. But knowing ‘who am I?’ beyond just the caregiving identity is so important.

Is our government doing enough to support family caregivers?

There are definitely more opportunities for the government to better support caregivers. I know that the employment insurance program the federal government currently offers has very specific criteria that doesn’t make every caregiver eligible to receive those benefits.

The work of a caregiver is never easy and there should be better policies and broader programs in place to help support them. The Canadian Centre for Caregiving Excellence is already advocating for policy reforms for caregivers, and I think that collaborating with such organizations can help all levels of government develop programs that are innovative, inclusive, and much more valuable to family caregivers across the country.

Originally published in Healthing. View the original article here.