Palliative Care: Last Goals

Me trying to get a sunset shot on the lake!

When your loved one enters in Hospice care, there are a lot of hard conversations that need to be had, in such a short window. Being prepared for those conversations is tricky, based on how your loved one is reacting to their new reality or if they are even aware of their decline. Having conversations, or even an advanced directive setup, will help facilitate all of the decision needed during the hospice care planning.

From my experience and from the experience my mother shared with me, between her and her mother. Having small conversations about these plans really help out in the end. When my parents drew up their will in the early 2000’s. She stipulated one thing, and my father stipulated something completely different from my mother. In the end, it’s up to the executor or next of kin to make the best decision they can in the moment. Making these decisions is truly pressured by emotion and bits of pieces of things said.

For my mother, her plans evolved after my father’s passing and how my father was dispositioned after his death. Ultimately she wanted them to be together, but she also wanted to be with us as well. While my sister had her choice to hold onto some of my parents, my brother and I kept with the scattering and mausoleum option that my mother chose. But decisions like this also include what happens in the case of hospice/palliative care is needed.

One of the clearest conversations I had with my mother shortly after learning her CHF was possibly coming back, was a conversation had driving home on New Years Eve. My mother was still in rehab from her back surgery and thankfully we were able to spring her from the facility to spend xmas day and new years eve at our house. Linda didn’t last till midnight, but she truly loved being able to spend the evening having dinner with family and outside of the rehab facility. On the ride home back to Palo Alto, she and talked about new year. She was pretty open about her CHF and that she was worried about making it to 75 in the new year.

The conversation turned positive but also turned into a series of resolutions she hoped for 2022, but also requests for me as her main care provider. First she wanted to be able celebrate her 75th birthday with her family. I made sure that happened. Fast forward to September, I booked a long table at a restaurant and gathered everyone to spend one evening eating dinner together to celebrate her. Sadly my family was not able sit and break bread, as we officially lost our COVID unicorn status the week before the dinner. We did however make an appeared in the parking lot, with the kids standing in the sun roof of our car, singing happy birthday to her as she left the restaurant. She was surprised, according to our FaceTime later that night before bed.

Her second wish, or request on that drive home from my house on New Years Eve. Was to ask me, should she start decline again, and she is in the hospital. She wants to go home to her apartment and pass there, instead of the hospital. My mom hated the hospital. And was pretty vocal how she didn’t want to die there. It killed her when my father passed away along in the hospital. She said she wanted to be some place that was familiar and around things she recognizes to bring her comfort. On the day before thanksgiving, after 3 days of fighting the hospital to move her back home to hospice. I finally got the call that she was cleared to transfer via ambulance back home to complete hospice.

We were warned she would pass shortly after arriving home. Sadly she was still heavy with pain meds for the transfer, so she wasn’t too much aware about the transfer trip. Back in her bed in her apartment, she was much more at peace. I sat with her for several hours, and she was able to rest a lot easier than she was in the ICU at the hospital. Later that evening she had a moment of clarity over FaceTime, which I will talk about more in another post. The one thing she did say in that call, is how happy she was to be home and looked forward to seeing all of us the next morning after a good nights rest. Sadly that visit didn’t happen as she passed in the morning house of Thanksgiving Day.

My mother used to share some her own conversations with her mother, towards the end of her life. Having these conversations not only helps the caregiver through the grieving process but it helps the caregiver to understand how manage their loved ones care and wishes. It felt like my mother gains some hope and peace in sharing her wishes. In the end, all we want to do is best by our loved one ad their wishes.