Two weeks ago we posted the Blog titled “Nursing Home Blues”. Terry contacted me after she read the article and we began exchanging emails. As we corresponded it become more and more evident to me that Terry’s experience is not unique. Many people are dealing with what Terry and her family are living through. As dementia symptoms increase throughout our country more lives than just the patient’s are affected. It is also evident that as a society we are not addressing the increasing need of providing appropriate care for these many individuals and their families.
With Terry’s permission I have included parts of our correspondence. It points to a need but unfortunately not a solution. My hope is other people reading this blog will share comments and ideas.
Dear Barbara, your blog, Nursing Home Blues, touched a nerve, so I reach out to you. This is an area that is in such need of review and transparency...having been exposed to almost every type of living arrangement for my mother, from Assisted Living, to locked Memory Care, living at home with caretakers, and then a series of what is termed 'health and rehab' facilities, I have found there is such a disparity between what is advertised, and what is real. And finding a 'nursing home' that consistently cares is impossible, I have decided. I used the spend down method of getting my mom into Medicaid coverage, but we were careful about visiting and asking questions all along the way. Even the best proved to be less than supportive toward dementia patients, and seemed to have a profile that all were expected to fit into, otherwise they were labelled 'combative' and proved difficult, if not impossible, to place. Someone who was not wheelchair or bed-bound, as my mother was not, was deemed to be 'too much trouble' because of the need for more contact and interaction.
I understand burn out, and having bad days, but kindness and caring are in low esteem by facilities, especially when watching the bottom line. Fortunately, I suppose, my mother is now bed-bound and we were able to get Hospice to help out, so she now fits the bill for a 'model patient'... but it still seems one nurse can wreck her entire day with a bad attitude at changing time or bath time. And family (which is me) must try to piece back together a mindset that keeps her contented and unafraid. This is a sad time of life. And I do have the Nursing Home Blues, quite regularly. Another good topic for someone like yourself, would be 'The Business of Dying' which I am hoping to delve into one day....people who are facing the prospect of a terminal illness need to know that it is a business, basically, and they should try to understand how to fit into the system. Just my thoughts.
Hi Terry, I appreciate your reply. You are so right about the challenges of finding appropriate care for many of our not so incapacitated citizens (because you are living it).
I agree with your ideas on "the business of dying". Treatment is paid for by insurance, Medicare, Medicaid. Treatment puts a lot of fancy cars in healthcare provider’s garages. I have very strong feelings about physicians and clinics charging for administering therapies and drugs. Physicians should not be benefiting financially from administering and/or the drugs they are prescribing. I see that as a conflict of interest and certainly deserves a second, or even third opinion.
When "treatment" fails or is not accepted there is a severe lack of services that are paid for by insurance, Medicare and or Medicaid. At a time when people need the most help there are few payment options outside of private pay. Hospice and palliative care does not pay for continuing room and board in any facility ,or for in home custodial care. Those two areas represent the most need for those with dementia, yet there is little if any financial help available.
I don’t have answers or even ideas for how to change this lack in our healthcare system. Let’s get a discussion started.
Something more about Nursing Home Blues Part 2...
As I think about "the business of dying" I think about how helpful my short film NEW RULES for End of Life Care. After watching the film most viewers are struck by the fact that we don't need medical intervention to die. Dying is not a medical event. No one needs a doctor or a nurse or to be in the hospital when they're close to death. But the medical community encourages it. Watch the film and have your eyes opened and then share it with your family, your church, your community. Let's all be educators on the normal way people die.