Imagine if, for ten or more months, you could not visit with your loved one except through a window.
Wonder if each time you visited, you found your loved one mentally and physically declining in ways that are obvious to you, but ignored by facility employees.
Try to picture your loved one with dementia reaching out to you, wanting a hug, yearning for a tender touch, and crying because you won't oblige.
After six months of his mother's being in isolation, Bill Borrelle finally got to see her in September. As a member of the Facebook group Caregivers for Compromise - because Isolation kills, too, Bill appeared on that site in a video on January 16, 2021 to share a list from A to Z of the areas in which his mother's mental health and well being had been impacted according to his experience in observing his mom. Note that she is legally blind.
Bill asked everyone to share his list, so I'm doing it here.
Anxiety
Boredom
Confusion
Dementia acceleration, despair, depression
Eating very little
Fall due to loose shoes
Eating very little
Gastroenteritis
Hearing aids not working
Inability to remember
Jail sensation
Keeps asking why I don't come in
Loneliness
Mold in fridge
No exercise
Overgrown fingernails
Persistent phone calls
Quests to be with family
Refrigerator without favorite snacks
Sleeping all the time
Ten months not going out
Unhappy
Very little social interaction
Weight loss
X-treme fatigue after getting and surviving COVID 19
Yearning for a hug
Zero visits from grandchildren and great-grandchildren
In less than a year, the Caregivers for Compromise Facebook group has grown to over 14,000 members, the great majority of whom are committed to changing their loved ones isolation by getting permission to visit in person. After all, they're willing to follow all protocols the facility has in place, but they have repeatedly been told they cannot have in-person visits.
But this group's efforts have had some astounding results. Lawmakers and Departments of Health and Human Services in some states have now recognized that, beyond being a welcome visitor, many family members are critical partners in the ongoing care and physical and emotional support of people living in nursing homes and assisted living facilities.
In some cases, they have designated these people as Essential Caregivers, noting that the goal of designating Essential Caregivers is to help residents who are missing care previously provided by a loved one or outside caregivers. An essential caregiver may be a family member, friend, personal private caregiver, or volunteer who was providing care before the pandemic and/or who needs to start providing care now because there has been a change in the patient’s condition and they now need care.
It's a great start, but there may be those who are thinking that more administrative action won't be necessary because with vaccines being administered, things will return to normal in terms of visits. But there are more impediments that mean those longed-for visits won't happen as quickly as everyone involved would like.
Some comments on Caregivers for Compromise explain why that is so:
"Here in NC there's no telling when mom's nursing home will open up. After the vaccine is given to the patient, the whole facility, employees and residents have to be Covid free for 30 days. The county is a hotbed. What are the chances no one will get Covid for 30 days. I'm heartbroken. Our loved ones are suffering greatly."
"Here on Long Island in NY, my Moms a resident in a Nursing Home and is actually due to receive her 2nd dose of the vaccine this coming week. HOWEVER, we have ALL been informed that until such date that the ENTIRE facility (BOTH residents AND staff) are 100% vaccinated, there is NO FORESEEABLE date for their lockdown to ease. That said; MANY employees as well as residents have refused the vaccine, so who knows when or if this nightmare will ever end for ALL of us. Its beyond heartbreaking, truly cruel at this point and inhumane already."
A number of those who have been able to do so have removed their loved ones from those places and brought them home, which can entail difficulties and adjustments for everyone. But that's not an option for many, and so the efforts to make in-person visits possible will continue.
And for every day that is so, isolation will continue to kill.
But I can't end this blog with that sad and scary prediction, so I'll end with this happy story of a woman who was able to take her mother out of the nursing home and bring her into her own home to live.
Here is what she posted about that on Caregivers for Compromise:
On November 20 my 91 year old wheelchair bound mother left her retirement community of 20 years (assisted living the last year) to live with me in an effort to keep her safe from Covid. It has been a difficult 6 weeks- exhausting, frustrating and a million other emotions. Being isolated in temporary housing because my home is not handicapped accessible has been making me a little crazy and maybe depressed, especially over 2 holidays but having her with me is all worth it, today especially. We got out of the house and went to Starbucks! My Mother’s first Peppermint Mocha DECAF latte- she loved it! She’s so darn cute sitting there drinking her Starbucks!
