Updated: Sep 16
A minuscule act to try and save the (dementia) world.
Even if Mom isn't super thrilled with going a'visiting I am deeply grateful that we have the opportunity to haul her butt around the northwest while so many of you are struggling, separated by COVID from your dementia loved ones. So I poked around to see if I could find some hope to offer you...
On June 26, the California Department of Public Health released a new policy regarding visitation that, for the first time since March, REQUIRES nursing homes to permit visitors for outdoor and indoor visits. There's rules-of-engagement hoops to jump through, but things are turning around!
I came across this AARP article: Status of Nursing Home Visits in Your State. If you are not being kept up-to-date by your loved one's facility it's a good place to check for information on visitation guidelines in your area.
And then I dinked around the interwebs for advocacy movements specifically addressing the issue of separating dementia people from their critical support system: the primary family caregiver.
Was AARP or the Alzheimer's Association, or any other elder care group working on provisions to insure this separation does not happen again?
All good on both fronts, but I was unable to find any organization addressing the health problems compounded by isolation for both the dementia person and their family caregiver.
However, my research led me to this article from the Center for Medicare Advocacy.
It highlights the government deregulation in the nursing home industry over the last three years, reducing current standards for infection control, behavioral health services, facility assessments, and food and nutrition management requirements among others.
THAT led me to the Long Term Care Community Coalition's Action Center, where I finally found a pathway to make my voice heard.
I clicked on the "Speak Out in Support of Nursing Home Residents" button and was directed to a page with an easy form, and pre-written message I could use to send to my concerns to Oregon's two state senators and congressional representative with one click. I chose to revive it somewhat, submitting this message instead:
Dear [elected official's name auto generated],
The 1991 Pediatric Bill of Rights, developed by the Association for the Care of Children's Health, and adopted throughout the U.S. medical system, includes these provisions :
If you choose, you can stay with your child during most medical treatments.
If your child is hospitalized, we will provide a place for at least one family member to stay near your child."
This has guaranteed that children under 18 are allowed one parent or guardian to accompany them for any hospital treatment, including COVID, because minors can not legally consent to treatment.
The adult equivalent is H.R. 3605 - Patients' Bill of Rights Act of 1998. This legislation does not address the unique situation of the dementias. Our people living with dementia are also unable to give legal consent and when the primary family caregiver, the crucial member of a PLWD's care team, is cut-off from their loved one the results are disastrous for caregivers and dementia folks alike.
With the ill-conceived separation of a facility-housed dementia person from their primary family caregiver during COVID, and that fact that the population of people living with dementia is projected to double in the U.S. around 2040, now is the time to revise H.R. 3605 to meet the needs of our fellow Americans currently living with dementia, and the newly diagnosed in the decades to come.
To do so, give family caregivers the same in-person rights that parents have to legally represent dementia residents in long term care facilities. Oppose future proposed deregulations, and roll back current ones that weaken individual protections while giving a pass to corporate abuse. Support and uphold the The Nursing Home Reform Act of 1987 to improve and strengthen safeguards to protect our most vulnerable Americans. This federal law and its implementing regulations provide residents the rights and protections needed to have quality care and a good quality of life.
I hope that you will join me in opposing any current or future actions to weaken the rights and protections of all nursing home residents, and begin legislative work that is inclusive of the unique needs of our fellow Americans living with, and caring for, those with dementia.
Because we family caregivers will be voting for those who do.
A woman who's gonna get way crazier than her dementia mother if you don't do what she says.
(Okay, I didn't actually put that signature in, but I super, super wanted too!)
The provisions that have been afforded to parents during this pandemic should also be extended to primary family caregivers. It's neither our dementia loved one, nor the primary family caregiver's fault that the country was not ready for a pandemic, and I doubt a single family caregiver wouldn't happily oblige all testing, PPE wearing, and limited visitation requirements demanded of them to be able to support their dementia loved one in-person through this ordeal.
This will not be the world's last pandemic. As a working family caregiver I don't have the time nor energy to change the world right now, but I can start with putting a bug in the ears of those who can, so future dementia households will not have to pay the exorbitant emotional and physical price of separation.