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In Part 1 of Hospice and My Dad, we left off with the Director of Nursing pulling me aside to broach the topic of hospice for my 88-year-old dad. Since then, I started a conversation with my older sister and older brother to get them to start thinking about the topic. It’s hard to need to make, what feels like a big decision, in a tight time frame so I’m thankful that my dad was receiving good care in his assisted living community while my siblings and I could take time to wrap our brains around the right timing for hospice.
As I thought about hospice, I asked myself a few questions including:
What signs of decline am I seeing in my dad?
- In my case my dad went from being able to get in and out of a car to being wheelchair bound.
- He was able to get out of a chair and stand with a walker but he now needs assistance with this task.
- His range of motion on a walker previously gave him the ability to get around his apartment but now he can only make it a few steps.
- He used to be able to send and receive emails but now he can no longer recognize where the cursor is located.
- He used to be able to start up and watch TV but now selecting the right channel becomes confusing
- And much to his chagrin, he has lost the ability to write legibly, which along with the other points shows decline in his mental ability in addition to his physical challenges.
What do other, arguably more objective, healthcare professionals say about hospice?
The Director of Nursing at the assisted living is the person who started the hospice conversation as she has seen many people go through these same transition points. Her big concern was having a plan for the future as decline continues its inevitable march forward.
My dad’s primary care provider is a Nurse Practitioner (NP) who rounds on residents of the assisted living. I reached out to the NP who sees my dad every month and she agreed with my assessment of the facts of my dad’s decline and that my dad would benefit from the additional support that hospice care provides.
The hospice Director of Clinical Services (i.e. top nurse) came out to see my dad and do an assessment and he acknowledged many of the same clinical notes of decline that the DON and NP and I have recognized, spoke to the hospice Medical Director who also concurred.
The Delicate Conversation: Considering Hospice Care for a Loved One
So armed with the support from a series of clinicians and my own observations it was time to have a discussion with my dad to see if he was willing to accept the additional support of hospice. You would think it would be an easy thing to say yes to but in reality you aren’t saying yes to more support, instead the patient, in this case my dad, is having to come to grips with the reality of his own decline and the inevitability of passing away in a future that gets ever closer.
If your parent is of the same generation as my dad then they are probably really good at “sweeping” difficult issues under the proverbial “rug”. I know my dad is a black belt in conversational karate changing topics to areas that are less sensitive but in this case with a little bravery and consistency we were able to talk a bit more deeply about his wishes.
What my dad was able to realize was that in many aspects of his physical being he was experiencing decline. This physical decline put him in a situation where he would benefit from more support. He was also concerned about being an increased burden to his care team who daily support his ability to function.
What my dad did not address was what the little voice inside him said about how much longer he might live. He’s an engineer by profession so a conversation based on data gave him what he needed to know to accept additional support. And my hope is that with the prompting of a hospice chaplain, social worker, or nurse he will reflect a bit more on how he wants this last chapter of life to play out so he can enjoy the remainder of his days.
The Impact of Assisted Living on Hospice Decision-Making: A Family’s Perspective
One area that I failed to realize at the time was the impact that my dad being in an assisted living community made on my thought process. If my dad was in my personal home and my wife and daughter and I were taking care of him then I would have accepted the support of hospice much more quickly as the relief provided to us as caregivers would have meant the world. But aren’t the caregivers in the assisted living community the same as my extended family? Aren’t they tasked with the daily care of my dad? Wouldn’t the additional support of hospice care allow the assisted living care team a moment of relief? Isn’t the assisted living truly my dad’s home? Of course, it is and now that we have decided to accept hospice one of my dad’s favorite things is that the additional support from the hospice care team will be a huge benefit to his assisted living care team family.
So where does that leave us? It leaves me talking to my sister and brother who both live in another state about the thought process and conversations had around this decision. I’m fortunate as I get along with my siblings and they trust my process and input. I could only imagine the difficulty of this decision if the siblings didn’t get along. And now I’ve made the call to the hospice company about bringing my dad on service. The wheels have been set in motion. I’m sure there will be more questions and conversations but I’m comfortable and satisfied that now is the right time for additional support and I’m grateful that the hospice benefit exists as a Medicare benefit in the USA as it’s making a big impact on the lives of its citizens including my dad.
