by Emily Kearns,
Consultant with the Massachusetts Lifespan Respite Coalition
Introduction: What? You want to get your nails done? We can’t be spending respite money so that you can get your nails done!
Well, listen up policy makers – ‘cuz what we’re learning is that yes, nails matter!
While respite policy makers are right to advocate for resources to support caregivers what is missing is the deep listening and honoring of what caregivers say will bring them meaningful respite. As is true with consumers of all support services, respite must be consumer-directed and include a wide range of choice. According to Dr. Dale Lund (1), respite that is not meaningful can actually contribute to increased depression. Meaningful respite allows caregivers to continue with the activities that brought them joy and relaxation before they became burdened with their caregiving responsibilities — and yes, for some, this means getting their nails done! Thismay seem silly and frivolous, but listen to anyone who enjoys manicures talk about the relationship between getting their nails done and their sense of well-being and you’ll be convinced that we can all use a regular dose of nail treatments!
What does a good respite program look like? In a recent focus group we held with parents of young adults living with autism, we learned first-hand about their vision for meaningful respite – respite with positive impactfor them as individuals and as family. We learned that how caregivers want to use their respite time is quite varied and may even include having one’s nails done. That’s right – nails. We heard two things: 1) meaningful respite is restorative and nurturing of the whole self; and 2) caregivers prioritize differently than some policy makers who prioritize based on Maslow’s hierarchy of need (2). Consensus was clear — beyond the basic needs of time to clean, shop, and pay bills, is a higher order of need – reconnection with self and others. When exploredin depth, this means a restoration of both a sense of healthy wholeness as an individual; and a restoration of one’s adult relationship with partner, friends, and community. According to what we’ve heard, Maslow needs to be turned on his head or, his nails!
Important themes emerged when participants talked about their ideal respite situation. When depicting their ideal respite day, participants sighed deeply as they spoke. We paused to acknowledge and inquire about the sighs and one participant said poignantly, “This comes from every cell of our bodies!” This desire – this yearning for a space apart from the incessantly stressful caregiving – permeates their being and, as they indicate, has a physiological impact – at the cellular level.
Focus Group Findings:
I. Ideal Respite: According to focus group participants, ideal respite means experiencing: Positive Feelings: joy, peace, calmness, relaxation, no stress, worry-free. Meaningful Activities for Caregiver: doing things they love that they haven’t been able to do: having a peaceful day at the beach, going out for coffee and pastry, having nails done, doing craft activity, going shopping or on a garden tour, eating lunch out by the water, going out with their partner, reading a non-autism or disabilities-related book.
When describing these activities they emphasized that in an ideal respite situation, they could engage in these activities, “without interruption.” Examples included finishing a sentence and reading something from beginning to end.
Meaningful Activities for Care Recipient: experiencing activities with peers, activities their child can do without them. One stated, “Peer activities for my child so my husband and I can be grown-ups together –together as opposed to a tag team.”
Support Resources: Here we cut Maslow some slack because indeed, they identify needing basic needs: transportation, financial security, appropriate housing with friends, paperwork and errands completed. Also -scheduling and support needs to be consistent – a theme heard throughout the session.
Confidence about Care Recipient’s State: There was adamant consensus that “you’re only as happy as your child is!” They agreed that their child must be healthy, safe, and successful for them to experience the ideal respite described above. Trusted staff was also identified as necessary for them to know that their child was safe and happy.
II. Resource Gaps: When identifying what they needed for this ideal respite, it was clear that they still need additional resources. Critical gaps identified by the group include: housing/residential funding, choice of day programs – as one participant said, “choice of programs that fits the child – not the cookie cutter program,” supported employment, a group home list, social outings, consistency, quality/skilled/nurturing/trustworthy people, extended care so family can get away, respite houses, and programs for adult children – “individualized programs for adults…like what school age kids get!”
Critical Future Concern and Fear – Aging out of Services: Many participants emphasized the fear and stress they feel as they anticipate their child becoming too old for current programs and support services. Emotionally, several gave the exact date their child would no longer be eligible for services and said they were very concerned about programs, housing, transportation and how they would cope after that.
III. Finding Respite Caregivers said they are too stressed and exhausted “to dig” for resources not readily accessible at first blush on websites. They said they wanted clear, direct, immediate access to resources labeled as “respite” and clearly sorted by disability type – for example, “Autism.” They also wanted pictures to be energizing and engaging, uplifting, positive, and happy depicting caregivers and care recipients in activity or laughing, hugging, doing something together.
Dr. Lund found that only 46% of caregivers are satisfied with how they use their respite time. (3) When providing respite, let’s work with caregivers to help them plan how they can use respite to improve their well-being and increase their overall quality of life – and yes, this may include nails!