Friday 29 October 2021

Help! I'm a Caregiver and I Need Therapy!

About forty years ago, I had what we called then, a "nervous breakdown". My life unravelled as I sunk further and further into a deep clinical depression. Back then, I had a LOT of talk therapy. Slowly over time and with the help of medication, I pieced my life back together in such a way that afterwards, I was stronger and healthier than I ever could have been had I not faced down my demons and bad emotional habits. 

I am fan of therapy. So when my son was born with disabilities and I became a caregiver in earnest, I naturally sought out a wise and compassionate therapist - someone who I imagined would understand the challenges of giving total care to a very medically complex baby. One after another DIDN'T understand. "I can't treat you if you don't get 8 hours of sleep every night", a therapist said. "But how will that happen? My baby has a neurological injury that means he screams at night - he has what the doctors call neurological irritability", I tried to explain. "I'll write you a note saying you need more sleep", he said. I left the note on the office table, walked out and never returned. 

So imagine my delight when I discovered Stephanie Muskat, a Toronto-based social worker whose own family caregiving experience prompted her to found Compassion in Caregiving - a therapeutic resource especially for caregivers! Here, you can learn a bit about Stephanie and her work. But I also encourage you to tune in to a FREE WEBINAR in which I'll be chatting with Stephanie about what makes therapy tailored to caregivers such a rare and much-needed commodity! The webinar is November 9th at noon, EST. You can register HERE

1) Stephanie, you are a social worker who founded a caregiver support practice in the Toronto area called Compassion in Caregiving. How did this all come to be? Tell us the story of your practice. 

I founded Compassion in Caregiving in January of 2021. Although we are currently a virtual practice, I do hope to bring it in-person once the pandemic settles down. We service all of Ontario for private therapy and family counselling and we provide many support services to those around the world through our many social media channels. 

Compassion in Caregiving is an act of passion for me. When I was 19 years old my mom began to show signs that we later realized were a complicated mix of neurodegenerative diagnoses- primarily FTD mixed with Alzheimer's. As her young primary caregiver I sought out support as I was really struggling at the time and was mostly met with dead ends. None of the support groups out there were groups I could relate to. Many were comprised of spouses of a loved one with dementia who were in their 70s and 80s- they felt really bad for me as a young caregiver which only made me feel worse ultimately. 

I was part of a general caregiving group for young caregivers but as with many public government funded group, it was very time limited and once it was over my access to support was not there. None of my other therapists 'got it' or had the specific knowledge of caregiving that I was looking for. 

I always had a passion for mental health and health and spent many years in university volunteering and working in the mental health field. I obtained my MSW in 2015 from the University of Toronto and once I felt I had sufficient experience to start my own practice, I decided to found Compassion in Caregiving to fill in the gaps that many caregivers face. I offer specialized caregiver therapy and family counselling which includes assistance in navigating the healthcare system and social supports in the Ontario region and as a previous primary caregiver, I get it.

2) I know that you practice in a hospital setting as well as in private practice. What is the difference between offering your professional support in the hospital vs private practice? 

Yes I do. I am an inpatient acute care social worker at one of the largest hospitals in Canada. Unfortunately, as is the reality with much of acute care, my time with patients and their families is limited, particularly as inpatient social workers wear many hats aside from counselling and assisting families in accessing community resources. We are heavily involved in discharge planning and family and patient advocacy in the hospital, and as the pressures for available hospital beds always remain high, discharge planning is one of the main areas we assist in. I am able to provide brief solution focused therapy to patients and their families but not regularly and definitely not in the way I am able to in my private practice. I also only see patients and families for the duration of their hospital stay which can sometimes only be days. The therapeutic relationship is short. 

In my role, every patient is assigned a social worker. I take on clients automatically and they remain on my caseload for the duration of their stay in hospital.

Unfortunately current or previous patients of mine in hospital cannot become private clients due to hospital policy, nor am I able to discuss my practice. However, I do have colleagues who have suggested their patients reach out to me- again if they are a patient in my hospital I cannot provide private support but these patients can benefit from our other services on our social media platforms. 

Private practice is paid for (some insurance companies do pay for our support- many are paying for social work support these days), but I can offer regular, ongoing, tailored and deep emotional support that I am just not able to provide for hospital patients. 

3) What do you think is the greatest support need that caregivers have today?

Definitely specialized therapeutic support and assistance with navigating our healthcare system and the community supports available. It can all be so overwhelming and confusing.

4) I know that your work and interests focus a lot on the impact of illness or dependency needs on family. Can you say some more about that?

Yes that is correct. Both in my private practice and in the hospital I am working with clients and their family members who are significantly impacted by a recent or ongoing diagnosis that shifts the dynamic of an entire family system. Sometimes this means that an individual who was acting as a parent or who was managing certain tasks in the family unit (ie. bills, cooking, homemaking, was the primary income earner in the family household) is now experiencing a degenerative diagnosis and is no longer able to engage in those tasks. Oftentimes these individuals were also a main emotional support for other family and friends and are suddenly unable to be that support. This results in an increased dependency on other family members and friends to take over those tasks and shift their 'roles' in the original family unit. There is also now the added impact of the loved one's illness and changes on the family members which were not there previously. As you can imagine this results in a huge shift and upheaval in a family system and can result in a tremendous amount of stress and frankly 'chaos'. Everything changes in a dynamic that previously had an ongoing organic dynamic and flow.

5) What have you learned about how caregivers can make peace with loss, grieving and in some cases death of a loved one? 

I have completed many trainings on loss and grief and death, but nothing can prepare you for the real life work. Working in the acute care setting I have been at the bed side of patients when they pass away and I have to say that the peace and relief that is present in the room once the family knows their loved one is no longer suffering is one that is unmeasurable. Quite often a loved one has been in and out of the system for years and the family faces some relief to know that the difficulties they have faced and also the upheaval that the family has faced is no more. It is extremely difficult for the family to mourn the loss of a loved one, but I find there is more so relief after death unless it is an acute and unpredictable illness.

The most difficult part for caregivers, I find, is losing their loved one to an ongoing degeneration while they are still alive. Seeing their loved one change and shift into someone they do not recognize, but still meeting with them and engaging with them is so difficult and causes ongoing tremendous amounts of grief. Every new change in their loved one brings about a new cycle of grief. It is so difficult to manage and accept and although many have to come to terms with the loss over time, it is still extremely painful for them to experience. 

6) Finally, do you have any thoughts or advice about resilience and self-care when caregiving is prolonged over years? How can people get in touch with you? 

Don't wait until everything builds up and you are overwhelmed. Do not put off self-care and time for yourself until you feel that you 'need it'. Make time for it in the moment whenever you can, even if it's ten minutes a day. You may not feel as though you need it in the moment, but if you do not care for yourself regularly, stress can catch up with you very quickly all of a sudden and lead to burnout. And burnout is much more difficult to manage and navigate than regular self-care to prevent overwhelm. This is not a sprint. It's a marathon. Take care of yourself and pace yourself every step of the way.

To reach me, please visit my website at, on instagram @compassionincaregiving or on my podcast, Caregiver's Compass, which can be listened to on almost all podcast platforms.

Stephanie Muskat, MSW, RSW 
Licenced Psychotherapist (Ontario, Canada)
Founder, Compassion in Caregiving 
Instagram: @compassionincaregiving

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