COMMUNITY LIVING SERVICES: Caregivers’ Column

Caregivers are especially resilient and will survive, be stronger, more sensitive. If you know a caregiver, give them a virtual hug and let them know you care.

[July 2020 | By Glen Hinshaw, author and former caregiver]

Last winter, caregivers and their loved ones were going about their routines. Day care centers were busy looking after their clients, giving caregivers some respite time for themselves. Caregivers attended support groups for emotional support and others sought professional counseling. Life is hectic for caregivers, but they dedicate themselves to care for another person.

Unexpectedly and suddenly, the nation was gripped in near panic and the confusion that ensued. In a matter of a few days, the word COVID-19 changed our world forever. Caregivers went to visit their loved ones in nursing homes and were stopped at the entrance that was locked with signs that read, “Because of the coronavirus COVID-19, this facility is closed to all visitors.” Families were even barred from being with loved ones who were actively dying, and not from COVID-19. They were hurt, frustrated, and angry because loved ones died alone. Nursing homes have locked down before because of influenza and other contagious disease outbreaks, but this was different.

The national spotlight shone brightly on nursing homes, where the death rate of those with preexisting health conditions was higher than that of the general population. Caregivers, the voices and protectors of loved ones, were suddenly left out in the cold. Nursing homes provided virtual patient care conferences via Zoom but barred face-to-face contact. Patients could see each other and talk, but the effort was mostly ineffective for those in memory care facilities.

Caregivers who had been visiting their loved ones every day just stayed home, frustrated and very alone. To some, the loneliness and depression seemed as life-threatening as the virus itself. Others found the respite a positive event without the guilt of not being with their loved one all the time.

Schools and businesses closed. Parents found themselves homeschooling their kids. The jokes abounded on the Internet about spouses adapting to the Stay-at-Home guidelines. If you have never been a caregiver, you can’t imagine what it’s like to be sequestered 24/7 with someone who has Alzheimer’s or other dementia issues. There were no jokes out there about caregiving during this pandemic.

On top of being cooped up 24/7, home caregivers were dealing with the same restrictions that everyone else experienced: closed stores, shortages of some foods and supplies. Gone were the opportunities for social interaction, exercise, church services, haircuts, and eating in restaurants. Family and friends stayed away to avoid spreading the virus. Caregivers who had learned the importance of taking care of themselves by making time to recharge their batteries via exercise and socializing suddenly found they were sliding backwards into isolation and depression.

Home care businesses adapted to the Stay-at-Home guidelines by retraining staff, donning face masks and gloves, and maintaining the new familiar phrase, “social distance.” Day care centers closed, leaving caregivers with around-the-clock responsibilities and no time for themselves.

Caregivers who were on the verge of placing loved ones into assisted living or a nursing home were conflicted about putting them into a potentially deadly environment. For a time, some facilities wouldn’t accept a new client because of the precaution of introducing the virus into their facility.

Professional caregivers in nursing homes become very attached to their patients and families. When there is a death, they grieve the loss more than is realized by those outside the system. They put themselves at risk to even go to work under these circumstances. They understand the pain these restrictions cause to their patients as well as to families. They deal with the questions of patients not understanding why a spouse or friend no longer comes to see them. Nurses and other staff do their best to meet the patients’ emotional need to be loved and attended, but the reassuring nonverbal communications of touching and hugging were off-limits. Administrators wished there were a way to allow visitations, but one infected person was too much risk to the whole facility.

Most caregivers and families have understood the necessity and approved of such restrictions, but the pain of not being able to be close to a decades-long spouse or friend has been emotionally devastating.

We do the best we can under dire circumstances. Instead of in-person care conferences, administrators and staff provided a regular written report to caregivers to keep them updated about their loved one’s condition. If there was a fall or a suggested change in care, caregivers were still notified and consulted. Good care continued as administrators and staff found new and safer ways to accomplish familiar tasks.

Caregiver support groups canceled their meetings. Those times with other caregivers were the social events of the month with those who understood what they were going through. They missed the emotional support they needed to keep going. Online networks were a stop-gap solution to stay in contact. Some reached out to others with phone calls, texting, and emails to share and encourage one another.

We all crave to get back to what was normal, but now we don’t know what the so-called new normal will look like. Caregivers are especially resilient and will survive, be stronger, more sensitive. If you know a caregiver, give them a virtual hug and let them know you care.  *

Glen Hinshaw was a caregiver for both his mother and wife for 36 years. He wrote that story in his book, Caregiver: My Tempestuous Journey. Glen also co-authored with Laird Landon a newly released book, Caregiving, Journey to a New Horizon. The authors also provide no-fee caregiver coaching and are available to give presentations to any group that supports caregivers. Email: CaregiverSupport@iCloud.com.