Before my Dad died, I had only one encounter with the concept of palliative care. My beautiful friend’s 18-year-old daughter was battling a recurrence of Ewing’s sarcoma, a relentless bone cancer, and the prognosis was not good. I vividly remember getting word that sweet Anna was now receiving palliative care. From that day forward, I associated palliative care with keeping someone comfortable in their final days as they die. I was not alone in that thinking.
According to the NIH National Institute on Aging, palliative care is a resource for anyone living with a serious illness. Palliative care can be helpful at any stage of illness and is best when provided from the point of diagnosis.
Why are families not having these conversations early in the journey of Alzheimer’s? Why are more physicians not speaking with patients and their caregivers about comfort care? I think one reason is that families don’t know what they don’t know and therefore they don’t ask. I also believe that no one wants to go there, to what we think is the end.
Fast forward to my Dad’s Alzheimer’s disease, and the day the medical staff at his memory care told my Mom and I that it was time for hospice. Again, I woefully lacked in understanding why. I knew that Alzheimer’s was fatal, but like palliative care of my friend’s daughter, I thought it meant that they suddenly expected him to die in a few days. I didn’t understand how he could have been at happy hour the night before, dancing and laughing, and suddenly he was dying. I asked the only question I could think of at the moment, can we talk about palliative care?
Here’s the thing about being thrown into a role as a caregiver with zero experience; we are often in survival mode. The day-to-day can be so overwhelming that we don’t have the time or emotional energy to spend what little free time we have trying to learn more about our reality. I searched for the obvious, not for what I didn’t know or didn’t see.
The medical staff at my Dad’s memory care had to explain that with Alzheimer’s disease, there are signs that indicate death is imminent within the next 6-12 months. An example of this may be when people stop eating because they don’t know what to do with the food on their plates. Or, when swallowing is getting more and more difficult. In my Dad’s case, the “move” to hospice wasn’t physical. It only meant he was moving to a new level of care. In all of the conversations we had about hospice care, we never heard the word palliative. When I asked about palliative care, the staff told us that it was too early to discuss, but that we should be confident that he will not suffer.
Today, close to a decade after that conversation, I speak a lot about the importance of families having conversations about palliative care at the time of diagnosis.
We need to change the narrative to help families think of palliative care, not as pain relief in one’s final days, but comfort care throughout the entire Alzheimer’s journey.
When you think of comfort care, you can better understand the types of questions you can ask your loved one’s physician. Questions like:
Is there any kind of therapy available for depression?
The anxiety seems to be getting worse. Is there anything we can do?
My spouse seems to fall so often, is there physical therapy that may help?
My loved one is having a lot of trouble sleeping? Is there something we can do to help?
If I use the example of cancer, the oncologist’s measures to combat side effects from chemotherapy would be considered palliative. Their main goal is to keep their patients alive, and they provide palliative care. Alzheimer’s is a terminal disease, so why aren’t more caregivers and families given information about palliative care?. The long-term effects of your loved one’s Alzheimer’s can be devastating. Most think of cognitive impairment, but depression, anxiety, inability to communicate pain, and side effects of certain drugs are common symptoms of the disease. These symptoms can (and should) be taken seriously and managed throughout the journey.
Let’s change the narrative and have the difficult conversations about palliative care for those diagnosed with Alzheimer’s disease. If you have a personal experience or would like to join the conversation, please provide your thoughts in the comments below.