A Letter To Those Who Don’t Understand:
Last March I was thrust into the world of long-term care residences when I moved my mom to Los Angeles (long story but it was necessary) to be nearer to me. At this point my mom needed extra support beyond what she or I could provide ourselves so we found a nearby memory care home to help us with a majority of her daily living needs.
March 13th is the one-year anniversary of visitation bans in this and pretty much all other long term care homes. I cannot be silent. I still see it’s hard for some people to grasp the meaning of all this, even for some family members who have people in these homes, and I understand that it can be easily misinterpreted too. So, read on to get a sense of what this is and what this is not…
Please know, first and foremost, that this is a HUMAN issue and not a political one. This issue is not, and never should be, a denial of the science of Covid, nor ignorant of vaccine efficacy questions, nor an affront to broader public health responsibilities. Here’s what it is…
Basically, the folks living in congregate care homes have been subject to a perfect storm of low staffing, poor management, corporate profit mongering, non-profit “revenue protection,” poor infection control, forced isolation, waivers of personal rights, unchecked use of chemical restraints (sometimes physical), retaliation fears and lack of family oversight. Legally, it appears they have no voice or choice in these matters due to their 1) age, 2) disability and 3) congregate living situation. But, worse, family members who typically would help them have a voice continue to be locked outside, even a year later, with very little chance to know what’s actually happening to their loved ones locked inside.
Here’s the kicker — no reasonable person is asking for the doors to be swung wide open. We just want to allow each resident the option to have the accommodation of just a responsible and safe designated loved one inside who can follow all the precautions expected of staff and is willing to accept the risk of entry.
Back to that perfect storm: These issues during this severe year-long visitation ban are leading to high death rates not only due to Covid infections but also because of the neglect that comes with staffing challenges.
https://www.cdc.gov/.../vsrr/covid19/excess_deaths.htm
Normally family members like me or other close loved ones are ‘visiting’ in these homes to provide supplementary care, psycho-social support, necessary personalized oversight and individualized advocacy; all of which are in extremely short supply through more formal channels even in the best of times. These individuals are considered caregivers to our loved ones, although we cannot bring them to our own homes for a wide variety of painfully frustrating reasons.
This enduring matter effects residents of literally all ages in skilled nursing facilities, pediatric nursing homes, pediatric subacute centers, residential care facilities, assisted living, halfway houses, group homes, memory care homes, intermediate care homes, rehab facilities, mental health facilities, live-in treatment programs, etc., etc., (all congregate homes where people live together expressly to share necessary care for their disabilities). This also effects the disabled in hospitals where they need one-on-one support but are still restricted from bringing their person with them.
Few to none of these places can consistently meet those needs without this extra support. So, this is why I fight.
And this is why you’ll be seeing a lot of talk about it this week and next as resident representatives raise our voices during this BANniversary period. Our biggest hope is to see that a national public policy is made to ensure residents in long term care homes (and patients in hospitals) will always have a reasonable accommodation option during times of public health emergencies. Responsible ‘family’ caregivers can be collaborators in care during these times too, if only given half the chance.
