Palliative Care: One Last Burst of Energy

Aptos Sunset

This phase of the palliative process does not necessarily mean, your loved one jumping out of bed and their engines are running at 100%. This phase of the decline process mark really a shift in their emotional awareness and even becoming more alert. I’ve seen this several times through out my life. From my parents and grandparents, even to parents of our friends.

Most recently, as my mother’s 12th visit to the hospital in 31 months. The amazing staff of the ICU were trying to keep her alive and reduce the increased fluids caused by her CHF, which required my mother to be sedated. Sadly, my mother and sedatives never mixed. Something I am well aware of for myself. Most of her hospital stays were extended, due to the slow process of weaning her off these meds. Towards the end of that last hospital stay, we had arrived to the point where hospice in the hospital the only option. As I mentioned in the Last Goals post about palliative care, my mother’s wish was not die in a hospital, like my father did. I spent two days working and pushing for my mother to be transferred back home to her apartment. Around things that were familiar to her.

I probably was told at least 10 times by 10 different people, that she will probably pass shortly after arriving home. All I could hear when they told me this, is my mother telling me, bring me home. My mother would survive the ambulance trip back to her senior community in the late afternoon. I stayed with my mother for about 4 hours after the transfer team had left. My mother mother’s last burst of energy would arrive two hours later after I left her apartment. The day she arrived home was the day before thanksgiving. She was still in a heavy sedated state, unable to articulate clear words but she alert and trying to speak or motion to me request for things. I decided to go home, because she really just needed some peace and quiet and sleep after the exhausting transfer. Two hours after I got home, and hour after I finished a dessert for the Thanksgiving dinner the next day. We got a FaceTime call from my mother. Her speech was back to normal and it was the first time the kids had spoken to one on one in a month. We chatted for a while and then assured her we were all coming over thanksgiving morning to bring her some linguica and other treats and returning again in the afternoon with their cousins. She was so clear headed, and happy in that call. Sadly she would pass in her sleep the next morning.

My grandmother’s Burst of Energy arrived a few days before she passed away in her sleep in assisted living back in 2013. Two months before her passing, my mother told my siblings and I, that she was declining and we should visit her. She was already in the late stages of dementia the last two years of her life. As the days, and months passed by, so did her more recent memories. What I learned about Dementia during that time, was it steals your memories away in a reverse, almost in a chronological order. The twins were born in late 2012 and at Xmas-time she was very much aware of the twins, while we celebrated the holiday at my mother’s house. One month later, during a visits to her apartment with the twins in tow. She had no idea who the twins were, but she still recognized Paley. Over the next two months, she suffered some health challenges and the dementia progressed rapidly. Next she didn’t recognize Paley, then she didn’t recognize me. My mother soon became her sister when she paid her visits.

I was making weekly visits to my grandmother in the end, sometimes with my mother, and one of the last visits I made. I decided to bring my family with me. When we arrived to the facility, we walked directly to her room, only to find her bed empty and made. My stomach sank. I sent Clem and the kids back to the front of the facility, expecting to get bad news for her absence. I waited at the nurse station to get some help, and a nurse said, she actually was having a good day and is sitting out in the front family room waiting for a visitor. As I walked back to the front of the facility, Clem was standing in the entry area, which was next to the front family room, and I motioned to the room. In the meantime, Paley had already walked into the room and found Grammie! As we said hello, she was a ball of energy sitting in a wheelchair. She proceeded to tell us, she was waiting for her uncle Jack and Pete to come take her to the Seal game over in San Francisco. It was hard to process at the time, but driving home, I had realized she was now reliving her childhood memories, as they were the only ones left.

The last experience where I have seen the ball of energy manifest. We had become close with the parents of one of our friends late in their lives. We had been a aware of our friends father’s decline due to cancer and his choice to not treat the cancer. One day while out shopping at a local grocery store, I ran into our friends father, surprised to see him all dressed up and pushing a shopping cart. He looked pretty good for someone who was declining. We chatted and he was being playful with Paley. She was sharing how her day was at preschool and he was excited to hear the news. I helped him find a few things but made it clear he was fine finishing his shopping on his own. I did linger to make sure he made it back to his car and watched him drive away. I only stayetd to settle my worry since I knew he was already starting the hospice process.

A few days later, I got a text message from his daughter-in-law that he had passed away. There was no service for him, but a few months later, I ran into his wife while out shopping and shared that encounter I had with him at the store. Her immediate response to my story was, “so that’s where he went to that day, and why we found groceries in his car after he passed”. It turned out the hospice nurse had just left the house, while she was out running an errand. He had been home bound for weeks. When the nurse came home was gone, but before she could start calling him, he had walked into the front door, making a b-line for the bedroom all dressed up like he went out to some event. She explained how it had all made sense, and he was obviously experiencing his own bright moment.

I wrote about this phenomenon back in one of my What to Watch posts about the medical tv show, The Resident. The episode that inspired this series of Palliative Care posts, highlighting almost of all of these “what to expect” during the decline of your loved ones. The bright moment does give you some hope, but in the end of journey as a caregiver. It gives you one last moment with the person, that can be clarifying or can just give you one last memory that you hopefully can hold on to with positivity for the rest of your life.