The following is provided by Janet Steiner, who started a respite program as a ministry in her church back in 1987. Thank you, Janet, and anyone else having info to add, please don’t be shy.

Caregivers need:

  1. To never stop seeing or recognizing themselves as human beings who deserve care (once they de-humanize themselves they minimize their ability to caregive for another).
  2. To recognize respite as a dose of “preventative medicine”. (respite is the “shot-in-the-arm” that gives them the strength to continue more caregiving)
  3. To realize that constant, non-stop, 24 hour-a-day caregiving is impossible, and unrealistic for any human being! (burnout, stress, and anxiety leads to their own ill-health and diminishes the quality of care they are trying to provide for their loved one)
  4. To understand that sharing the caregiving role adds quality and dignity to the life of their frail loved one. (caregivers, in their efforts to be “super-human” and do it all themselves, unintentionally and inadvertently isolate their loved one from social contact which perpetrates boredom and depression)
  5. To realize that respite providers know that noone else can do as good a job as they are doing as the primary caregiver but someone else can do an adequate and acceptable job for a short period of time!
  6. 6. to know that regular respite can be the one important element of their care plan that can prevent institutionalization or at lease delay that option.
  7. To know that resorting to the use of respite is not a sign of failure or weakness but rather one of strength. (it takes a strong person to recognize their limits and to know when calling in reinforcements is good for everyone!

I can’t tell you how many elders interpret their marriage vows “until death do us part” to mean that they must be the sole caregiver to the end; they then proceed to caregive themselves to death, and the chronically, frail spouse is left to the mercy of society.

I am constantly reminding them that even Jesus did not do his ministry all by himself! He knew he needed help to get the job done!

Advice to other entities on respite care:

To clergy: members of your congregations turn to you in hard times and trust your advice, you need to understand what respite is and how it can help families. You need to be familiar with respite options in your communities. You need to give caregivers “permission” to “accept” help! Too often, when couples can no longer attend church it is because they have become prisoners in their homes—one caring for the other—and instead of support they are allowed to become further disconnected.

To doctors: No! frailty is not a normal part of the aging process! Elders can and need to be treated for depression and other conditions. Respite should be a prescription! The health of the caregiver needs to be addressed right along with the medical needs of the carereceiver.

To insurance companies: respite should be viewed as a prescription or as therapy. Caregivers who use respite, have fewer medical expenses of their own. When they are healthier, they do a better job of caring for the carereceiver whose medical costs can, then, ultimately be reduced. Helping families access respite can be cost-effective.

To legislators: providing funding to support respite programs can reduce the financial drain on other programs such as Medicare. Respite keeps people in their homes, the least costly of all options. Caregivers need tax breaks and tax credits while they take time away from their jobs to provide care. They need job protection. Right now, we have a generation of middle-aged women who have had to quit work to care for parents that weren’t supposed to live this long, and consequently, these women are not building personal retirement accounts, and they are destine to become our next generation of charity cases.

To the public: they need to be informed, advised, and understand the concept of respite. Respite can be an in-home relief service provided by professional health care providers, by family members, or by volunteers trained to provide a safe, supervised environment. They need to understand how they can become part of the solution.

Respite can be a day-care model, where carereceivers come to a central location under the supervision of trained personnel to assist with eating, toileting, and other tasks to help maintain independence for as long as possible. Day care provides socialization, stimulation, mental and physical activity, basic health supervision, and mental, physical, reminisces, pet, and other therapies.