Caregiver Warrior
One of the most difficult times for Caregiver Warriors is the end of life stage for their loved ones. The situation is devastating and the emotional roller coaster is excruciating. We recently agreed on hospice care for a loved one and were blessed to be guided to a heaven on earth palliative care facility. The decision for our family to use an outside facility as opposed to having hospice care at home was the right one due to physical complications and other variables. We made that decision after lots of conversation with the patient, numerous doctors, nurses and social workers. We went to the facility right from an agonizing 3 month stay in a hospital where all the stops were pulled to try and extend her life with countless procedures and continual poking, prodding and testing. So we were prepared for a more gentle and comfortable approach when we moved her to the new faculty Once settled into the palliative care facility things changed immediately. The type and level of care was completely different. Comfort became the utmost priority as opposed to invasive life saving procedures. The shift to comfort and dignity for end of her life was extraordinary. She could do whatever she wanted, eat whatever she wanted and needed only to ask for anything she desired including pain medication. Her requests were met with enthusiasm and quick turn around. The mood of the staff and nurses was one of extreme patience, compassion and humor. Smiles were the order of the day. Her condition actually improved for a few weeks because the food was plentiful and appetizing, the pain was reduced and the environment was stimulating and attentive. Friends and family stopped by and we took full advantage of all the services in the facility. There was a music therapist that stopped in every few days and since our loved one was in the entertainment industry that visit was a big hit. The therapist appeared one Sunday and our crew of family and friends sang Beatles songs sitting around the hospital bed. All of us including the patient laughed and cried and it was an amazing experience. Notwithstanding this wonderful care in hospice and our attempts to have as many meaningful moments as possible, attending death and end of life is never easy and was completely different than we had pictured it. It wasn’t as dramatic as we expected but on the other hand it was harder than we imagined. The most surprising thing was how normal life appeared to be for the rest of the world. It was hard for me to function in the real world where no one seemed to be feeling what I was feeling and life went on as usual. It was also exhausting. Obviously we wanted as much quality time as possible with her in addition to obsessing about making sure the staff and doctors were being attentive at all times. We had constant questions about her condition and as she began failing we wanted to make sure we were taking advantage of anything we could to make her comfortable. We lost sleep and were anxious and frightened all the time although we did our best hide it from her. We were worried and sad watching her slip away. We felt relief when she slept or rested and rejoiced when we could make her laugh and hang out with her surrounded by family, friends and love. We truly tried to take care of ourselves by trying to get enough sleep, trying to eat right and sometimes rotating shifts with other family members. We all worked full time jobs and sometimes a night or day off meant re-charging our emotional and physical batteries. This radical self care made the sadness and grief bearable. There is no happy ending. Sadly one Sunday morning she passed. The day and night before she was extraordinarily uncomfortable. We were devastated but not surprised she chose to leave us. She is free and peaceful now and we are comforted by that thought. We know we made her end of life as rich and comfortable as possible. Letting her die with dignity gives us a sense of peace although the grief is now surrounding us like a heavy cloak. End of life journeys are never easy but there is a choice about how we travel that journey. I personally believe that comfort and dignity trump endless attempts to keep someone alive. I also believe that when possible the patient should decide end of life directives and it is our duty as Caregiver Warriors to present those directive options to those we care for. That means having discussions about end of life choices before someone becomes seriously ill, constantly checking in on our feelings and those of the patient and having great communication with all including doctors, nurses, and social workers. Thankfully we were able to fulfill our loved ones wishes and as we look back on the last few months we know she had the best possible care and the journey she chose. Do I have flashes about those last few days, seeing her right before she passed? Of course I do. But I can quickly replace those with a picture of the smile on her face as we were all singing “I want to hold your hand” or her glee at getting her favorite dessert every meal or remembering how she reminisced with all her friends, laughing and cracking us all up with antidotes and amazing stories. I believe she is a peace and so are we. We did everything we could to allow her to die as she wished; proud, courageous and comforted. In today’s world that is priceless gift and a true act of love and kindness. It was the least we could do for her and for ourselves. May she rest in peace.
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