Many families promise never to put loved ones in a nursing home, but the spirit of that promise is that you will always give the best care. Sometimes, that means NOT doing it yourself.
I recommended nursing home placement for a patient with dementia, obesity, and end-stage diabetes. She lived with two daughters and four grandchildren under the age of ten. I always thought the situation was too much for the primary caregiver; she was not only the eldercare point person, but she also supervised afterschool activities while her sister worked. The daughters always declined until a diabetic foot ulcer required a leg amputation. Again, the daughters refused. They had said “NEVER.” The daughters were trying to help mom into the bathtub when she slipped, fell, and broke her hip. One daughter injured her back, the other hurt her wrist. Was this the best care?
Most families have only one, or two people, trying to give care that requires three shifts of professional caregivers in a facility. Is that the best care?
Caregivers think their loved ones will get worse because of the nursing home. In my experience, families make the nursing decision too late. Because they said “never,” they wait until the senior’s illness is so advanced, or the caregiver is so tired, sick, or injured that there is no way to provide good care at home. In fact, the quality of care may have been slipping for some time. When subjected to these late, often emergency nursing home admissions, severely ill seniors do what their chronic illnesses dictate; they get worse, and even die.
Seniors with dementia only seem to get worse in the nursing home. Living in homes for decades before their brains failed, they encoded familiar cues that allow them to continue some level of function during the illness. In unfamiliar environments (hospitals, nursing homes, and even other relative’s homes,) they can no longer hide how sick they really are. Some nursing homes give poor care; some seniors become depressed and lose the will to live, but healthy people do not need twenty-four-hour nursing care. In most cases, deterioration is due to the illness, not the building.
To help families avoid these late decisions, well before the need became obvious (often, as soon as I presented the diagnoses and Level of Care prescription [LOCRx],) I asked caregivers,
“What would make you decide that you could no longer care for him at home?”
My goal was to draw a line, using possible changes in the senior, caregiver, or other factors that affected the situation. As our relationship continued and the illness progressed, I could remind the family of the boundaries they’d set, raising the nursing home issue myself, so they did not have to.
Many families realized their loved one’s illness was already so advanced, and the caregiver, so overwhelmed that they had crossed the line months, or even years earlier. Others used those boundaries to make proactive plans. When changes brought them closer to the “impossible point,” these families recruited more resources and moved the line. They knew the nursing home would be the only alternative when they could not move the line another inch. When it was time, they didn’t feel guilty; they also knew they’d done all they could.
You promised never, but when you cannot honor the spirit of that promise, don’t think you’re putting them in the nursing home; you are using the nursing home as a tool. Allowing trained staff to handle direct care, frees you to do things with and for Dad, not just to him. This gives you more good time and lets you to concentrate on advocating for him.
Next Week. The Nursing Home Decision-Part 2: You are STILL the Caregiver. How to Stay in Charge