Caregivers of aging parents face many difficult decisions. It is especially difficult when, as children, we do not want to take charge of an elder’s affairs. We want them to retain their autonomy as long as possible and not interfere in their decisions for their own care.
The time comes, however, that as caregivers we see our elder experiencing increasing discomfort, whether pain, emotional upset, neurological behavior problems, severe weight loss, difficulty breathing, and a host of other problems. If your loved one is suffering for most any reason, it is time to have your local palliative care agency determine if your older parent is a candidate for their services.
In our case, we waited too long. Frank fell in the shower and hit his back on the bench. The impact was right over a kidney, and though there was no lasting injury, he was in pain for several weeks. His pain was severe enough that he spent most of his time in bed, which I think contributed to a bout of pneumonia. Pneumonia meant hospital; that led to a nursing home stay and his decline accelerated. He needed palliative care after he fell. We just didn’t know.
As caregivers we tried our best to arrange for top-quality care for Frank. We knew about palliative care but that is about all. When he fell, he was treated by his primary care physician, a physician’s assistant, and the assisted living nursing staff. No one mentioned palliative care. I think they felt they were handling things, why bring in outsiders? In other words, protect our turf.
As time went on, Frank’s decline continued. He had been losing weight, which got worse after he fell. Then, as he felt better, his weight stabilized for a while. We felt better. One day a few months later, we were visiting Frank and I noticed the weekly weigh-in sheet on the counter at the nursing station. Frank had lost four pounds in two weeks.
By then we knew more about palliative care and called them in. Four weeks later, Frank was dead. His last few weeks were better because of palliative care and hospice, but his last several months could have been better. I wonder if palliative care would have relieved Frank’s pain and discomfort enough after his fall to keep that last bout of pneumonia away. We will never know. The pain of caregiving.
There are a few objections to palliative care. Fear of morphine addiction. There are many studies that show this is not a concern. Palliative care people are well trained and experienced and use no more of the drug than is necessary to alleviate pain. If this is the case, a patient will not become addicted.
Palliative care and hospice mean giving up hope. Not true, palliative care allows aggressive treatment and is solely concerned with the patients’ comfort. If patients are comfortable and not suffering, they tend to live longer. “Palliative care is to make you feel better so the treatments can do their job.” Hope changes, from a cure, to comfort, to peace, to a good death. Hope is a process.
Palliative care is too expensive. Most Medicare supplemental plans cover palliative care. Talk to the provider.
Palliative care is just for cancer patients. It did start that way. Today palliative care is for any patient who is suffering, whether from cancer, pulmonary disease, kidney problems, emotional problems, or many other conditions.
The goal is to make the elder more comfortable, which makes everyone involved more comfortable. Palliative care helps aged parents, but it also helps their caregivers.