At 17 months old, Kate was chronically unwell, and crying all the time (think of an incessant colicky baby). If you have been following Kate’s Story, you can probably understand that I was starting to burn out. I had started a search for care for Kate, not full time but at least someone who could give me a bit of respite. It had to be someone who would be comfortable with Kate’s health status, her crying and bouts of extreme fatigue, her lack of tone and balance, and her feeding issues.
Respite was a new word to me. I’m sure I had heard it before in passing, but I had never really given it much thought – it wasn’t part of my daily lexicon that’s for sure. I also had an emotional reaction to the word when I first heard it as part of describing our family situation. Respite means asking for help. Asking for help means you need help – that someone in your home is either very unwell or disabled. Needing help means you weren’t coping or couldn’t cope? (Inner voice: “Silly Julie, you know that is not true”. Me: “I know, but I just can’t bring myself to ask for help”. Asking for help, a skill and topic I need to write about in another post – note to self.) I don’t consider myself a proud person, but I do consider myself strong and independant. I wouldn’t need/didn’t need the classical form of respite I told myself. I was just looking for someone to help me at home so I could have a break and regain my energy. So I could have a moment.
As I often do when writing a post about a particular subject, I googled the word respite. Here is some of what I found:
Respite care is the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home.
Respite programs provide planned short-term and time-limited breaks for families and other unpaid care givers of children with a developmental delay and adults with an intellectual disability in order to support and maintain the primary care giving relationship.
Even though many families take great joy in providing care to their loved ones so that they can remain at home, the physical, emotional and financial consequences for the family caregiver can be overwhelming without some support, such as respite. Respite has been shown to help sustain family caregiver health and wellbeing. Respite may also reduce the likelihood of divorce and help sustain marriages.
As I read through this description. I find myself nodding yes and recognizing myself, and our family, in all of those statements. We were (and are still) under a lot of pressure and in need of relief. Having taken on 90% of Kate’s care, from the day to day, to the medical coordination and advocating for Kate, I knew intuitively that what I was doing was not sustainable. To this day, I wonder how long we can keep things going, and though I am a little better at it, I still have a hard time asking for help. Our situation with Kate was taking a physical tole due to extreme fatigue and incredible stress, emotionally we were impacted more and more with every diagnosis, episode and invasive test Kate had to endure. Financially we knew we would have to make serious adjustments to hold onto the life we had.
I had been told by a social worker that 70% of families with children who have medically complex conditions and global developmental delay or similar disorders end up in divorce. That social worker encouraged us to explore every means to not let that happen. I have to say, I can see how this could happen to families. You need to be so focussed on your unwell child, the enormous amount of information, appointments and hospital time, trying to keep your other child engaged and trying to keep the family ‘running’, that the couple starts to get lost. Compound this with ‘regular’ life stresses, and things start to get shaky and surreal.
I wonder how other families have dealt with caregiving and respite. I am a big fan of fellow blogger, and incredible caregiver advocate, Donna Thompson. Her blog is titled the “The Caregivers’ Living Room” and in it she explores the ethics and economics of giving and receiving care drawing on her experience as a Canadian mom with an adult son who has special needs, and having lived in the US and abroad experiencing caregiving policy and services in those countries.
As I started to explore our options for respite, we also started the long process of applying for provincial programs that would provide some financial assitance for respite. Depending on the province, there may be provincial plans such a SSAH, ACSD or Enhanced Respite Care Funding like we have in Ontario, however many of these funding sources have very long waiting lists or are based on income so accessing the funding is difficult. Because Kate was so young and her illness not yet understood, frequent and volatile, I knew In-Home Respite would be the option that would work best for us. We have also had excellent experience with Specialized Respite at Rogers House which is affiliated with CHEO. Rogers House provides a “home away from home” for children with life-limiting illnesses and their families. As Kate is a palliative care patient at CHEO, she has access to Rogers House and we have used it as a transition from hospital to home when Kate has had very acute and life threatening episodes. As wonderful as the House is, I can’t bring myself to attend support groups there or use the respite services they have to offer. I consider Kate too young, and not (yet) sick enough. It is a wonderful place, and perhaps for a future time for our family.
As Kate has gotten older, we have begun to use babysitters in our community – commonly called ‘Companion Sitters’ in respite speak. These young people are only left with Kate when she is well, and often when she has already been put to bed for the night. Their parents are fully aware of Kate’s health situation and hearing loss. We have had some amazing sitters who have developed very strong bonds with Kate. We never go far, are never out late (at least I’m not *smile*), and one of us is the ‘designated parent’ in case Kate does become unwell and needs us. As Kate gets older and as we have become more comfortable with her illness, I have found I am more comfortable using babysitters.
The last 2 years, Kate has also engaged in a Supported Daycare program. We have been able to do this with the support of Children’s Integrated Support Services who provide Kate and our family with a case worker who coordinates her integration into a preschool program and manages team service plan meetings among all her therapists. Kate is provided with a program assistant who manages her in the preschool setting, helping to facilitate peer interaction, language skills (the PA has knowledge of ASL), and implements goals and activities devleoped by her various therapists. CISS has been an amazing resource to us and I can’t imagine how we would have been able to send Kate to preschool without the support we have received.
Another support to our family are the friends and neighbors as helping hands. Once our community realized what was happening with Kate and the seriousness and ongoing nature of her illness, they have been incredible in their support of our family. Our friends and neighbours don’t necessarily provide respite when it comes to Kate, but they are there with a helping hand of meals, hospital visits, financial support through an incredible fundraising effort, and a listening ear when Kate is in hospital.
Soon I will explore another form of respite that you don’t read about, or doesn’t seem to be reflected in the literature, school based programs, which is very exciting for Kate. Slowly and surely we are moving into a base of support that is working for our family. What strikes me though, is that Kate had to be older before this support really worked for us. I struggled for a long time, and did ask for help. It just seemed that nothing was really available.
In my case I wanted respite, I wanted help, but I didn’t want to leave Kate when she was unwell. I felt incredibly guilty handing her to someone when she was crying and sick, and needed her mom. At the same time, I needed a break from the crying, or someone to help me get the usual tasks done at home which were made difficult while carrying around my sick toddler. The Supported Daycare model only worked when Kate was well, but what about when she was home sick for 10-14 days? Perhaps if enhanced respite had been available to me at that time, I could have used its flexible model to ensure support in other ways. However, it took a lot of paperwork and waiting to get that service in place, as well as the support from social work. These were all things that were not made available to us at the time, which makes me wonder, where is the care model for special needs babies and preschoolers in respite and caregiving?