During the pandemic lockdown, I shared the mental impact of isolation on our family. Emily was agitated, distraught, and angry. I was beginning to experience the taxation on my body, mentally and physically, as our family navigated the world with a limited supply of support and services. When schools reopened, and Emily’s after-school program resumed, it provided much needed relief. We settled into a new normal that offered more support outside of our home and an opportunity for Emily to interact with her peers and get out of the house. Emily had a great final year in public education, and our family began to feel supported. I had time each day to sit in stillness, catch my breath, and care for myself.
Man, did that year go fast! In August 2022, Emily aged out of the public school system and her after-school program. Some of the support and caregivers that came to our home during the pandemic went back to full-time jobs, changed careers, or moved out of the area. Support was once again an essential missing piece. It is possible for me to care for Emily 24/7, but the cost is my health suffers. It is often mentally and always physically exhausting work. I have said for years that it takes a village to care for my daughter. Meeting the needs of a child with severe physical and intellectual disabilities is not a solo job. I cannot do the job on my own forever and ever. It is not sustainable.
In January, I hosted a vision board workshop for local mothers that are part of We Are Brave Together. It was a wonderful way to set intentions for the year and create a visual representation of what I wanted for my family in 2023. As I thought about what I wanted in 2023, I realized I wanted more caregiver support. The last six months had felt like the pandemic years all over. I was beginning to count on old habits to address stress and fatigue. I knew staying up late watching television and eating and drinking were not viable solutions to manage stress and fatigue, however, these habits are easy to deploy and gave me a false sense of stress relief at the end of the day. I realized it was a train I needed to quit taking regularly. The answer to my problem is not found on Bravo or in popcorn and a glass of wine. The solution is creating more support to shoulder the load of caring for Emily.
The problem: I cannot sustain this level of care for Emily without my health deteriorating.
The solution: I need more caregivers for Emily. This is a group project. It is not a solo mission.
I spoke to Emily’s caseworker at Harbor Regional to inquire about getting more resources. I was offered some personal assistance hours to add to our monthly respite hours. While this was fantastic, I have yet to find a reliable assistant through the service provider. It is already April, and I have not been able to utilize the hours we received in January.
I included on my vision board caregiver support and outsource and delegate. I continue to look for a solution to the shortage of activities and care for Emily outside of the home. Emily attends the AbilityFirst Adult Day Program during the week for five hours. I am hopeful a full-day program will be offered in the future. (This was provided pre-pandemic but not since.) I recently found a caregiver who comes twice a week to bathe Emily. This has been a game changer for my physical well-being. I appreciate the support in this area. She will also take Emily for walks and on excursions.
This past weekend, Todd and I had the opportunity to stay at The Hotel Maya in Long Beach for the night. I found a caregiver willing to stay at our home for the night and care for Emily. She provided fantastic care, and Emily had a wonderful time. The gift of sleeping in at a hotel was beyond incredible. Todd and I got to sleep in and then enjoy brunch uninterrupted overlooking the Long Beach shoreline. It was magnificent and magical to have that 24 hours of time away from our responsibilities together. It was precisely what I needed for my mental and physical well-being.
I hope to create more opportunities for Emily to stay overnight with a caregiver in the future so that Todd and I can have extended respite together. It is important for our relationship to have time to connect outside of the home and without the responsibility of caring for Emily.
It is imperative that I stay vigilant in bringing my vision for more outside care and support for Emily to the forefront of my mind. I must not let myself get complacent and give up on searching for a network of caregivers that can support Emily and our family. Our family cannot rely on one caregiver to meet our needs, as I know from experience, one person cannot do it alone. Here’s to 2023 being the year of successfully creating external support for Emily, our family, and our increasing need for assistance.
One thought on “Caregiving: A Group Project, Not a Solo Mission”
Once again Billie, I am in awe of the way you connect to the reader and I can only imagine other caretakers are so grateful and don’t feel so alone.
It allows me a glimpse of what it is to care for Emily and things I take for granted that are true gifts to you
Sending love my friend to you, Todd, Emily and Justin
Ask Todd if he remembers going to Cano for the Tuna Jackpot Tournament trip I won…That left you at home with two small kids but Emily was perhaps a little easier to care for back then
Love and prayers