Skip to content

Caregiver Fatigue: Part 1 – Respite care

Robert got stuck in the bathtub. He managed to orient his body sideways, his right leg stretched out, his left braced in a triangle with his body propped up on one elbow like a Greek aristocrat awaiting the delivery of figs and pomegranates with sweet cakes. Unfortunately, the similarity ended there. Robert could not figure out how to relieve his elbow or sit up. I only learned of his distress when the water cooled down and he got goosebumps.

As anyone who has ever bathed a toddler knows, getting a 30-pound child out of the bath is challenging. Toddlers are wiggly and slippery, and bending over the tub to hoist them up is awkward. Robert weighed an additional 150 pounds. I could not wrest him from the clutches of the tub by myself.

Limited physical capacity

I drained the water and covered Robert in several towels to warm him up. I waited for Jackson to get home from the gym. (He was on a break between college terms and home for a few weeks.) Jackson was able to lift Robert out of the tub for me. What a relief.

Robert could also get stuck on the floor. For years, he’d taken care to exercise by riding his bike, walking, and doing yoga. Even in his diminished state, he had every intention of keeping up his routine. Unfortunately, he could get down to the floor for yoga, but shortly after settling on the carpet, he’d forget what he was doing there, and he couldn’t remember how to get back up.

The first time this happened, I pulled him up to the couch nearby. The second time this happened, I initially tried to get him to roll to a nearby armchair with limited success. Using gentle humor, then less benign cajoling, and finally threatening to call 911, I was able to get him off the floor. The third time, I did call 911.  I just didn’t have it in me to struggle anymore.

Give me a break

After a particularly bad week of negotiating too many crises, I finally reached out to Petaluma People Services Center for help. I had heard that PPSC offered an Adult Day Program. For years, on my way home from work, I’d driven by the sweet, pale yellow craftsman-style bungalow that housed the Senior Center without giving a thought to what it might offer.

Adult day programs sometimes referred to as “adult daycare” offer respite to caregivers who need a break from the relentless demands of caring for a person with dementia and/or physical frailties.

Since caregiving was new to me, it never occurred to me that such programs existed. Further, I would never have thought to look for “adult daycare” to provide respite care, much less an “adult day program.” (“Adult day program” doesn’t suggest dementia or physical frailty to me.)

Enrolling Robert

In any case, I reached out to PPSC to learn more. Since the program caters to cognitively or physically frail individuals, Robert would be interviewed to ensure his suitability to participate. Respite was offered Monday, Wednesday, and Friday every week from 10 am to 2 pm. A varied lunch was served at noon each program day. Caregivers could opt to have their loved one (or self-referred impaired seniors) participate all or some days…with advance notice to ensure that the appropriate number of lunches were prepared, of course.

Robert loved the program! He was able to spend time with other seniors in a similar situation to his. He worked on creative visual arts projects and listened to live concerts by local musicians and he danced! The group’s facilitator led her charges in games and discussions that stimulated Robert and lifted his spirits. (He did come home one day convinced that he had won a trip to China in a Bingo game. I hoped that in time he’d either realize that didn’t make a lot of sense, or he’d simply forget. He forgot.)

Robert even had a friend who attended the program with him. Hans was diagnosed with Alzheimer’s and Parkinsonism at about the same time Robert was diagnosed with FTD. They enjoyed each other’s company immensely, even carpooling to daycare on rainy days.

The tsunami is coming

Petaluma People Services Center is a nonprofit. PPSC offers the Adult Day Program on a sliding scale. No one is turned away because they can’t pay for the service. This is a huge relief for families struggling to imagine how they will ever get a break from caring for their loved ones. I live in a town where care for the infirm and vulnerable is a priority. Not everyone is as fortunate.

There will be 9 million Americans with dementia by 2030. ​By 2050​ that number will grow to 12 million. Worldwide the number soars to 135 million by 2050. We need policies that support funding for services such as the one offered by PPSC. Without respite care and mental health services focused on caregivers, we risk tearing families apart. Consider that over 30% of caregivers have thoughts of suicide. (By comparison, less than 3% of the general population experiences suicidal ideation.) One recent study reported that 1 in 17 caregivers died by suicide. My octogenarian neighbor took his own life. He could no longer care for his infirm wife. They had been married for over 60 years.

Let that sink in for a moment.

Find a program that can help

Since taking advantage of respite care, I strongly encourage anyone struggling with the responsibility of caregiving to look for a program that can provide some relief from your harried days. While I have no experience with extended respite care, I understand there are facilities that offer comprehensive care for weeks at a time. These programs enable caregivers to take much-needed vacations without worrying if their loved one will be safe during their absence.

Robert participated in the Adult Day respite care program for almost one year. Then COVID-19 hit.

3 thoughts on “Caregiver Fatigue: Part 1 – Respite care”

  1. Not sure what to say after reading your blog. Saddened to hear your carefree sweet husband has developed some obstacles. Thank you for sharing! Sending you love for the South Carolina coast! 💟💟💟✌️

Share your comments

Your email address will not be published. Required fields are marked *