Two Months, 56 days or 1,344 hours
Tomorrow marks the 2-month anniversary of Ken’s passing. I haven’t had the strength to write about what happened yet but feel it is time now. Hospice was not there for us toward the end in fact the whole point of hospice seems a mystery to me now. They keep calling me to see how I’m doing, probably to check in and make sure I’m not going to complain about their lack of service. I had to insist that a hospice Doctor see Ken at first because I was told that wouldn’t happen for 3 months. After the Doctor saw Ken he agreed that Ken could benefit from physical therapy to help him use the devices; cane & walker. You have to be assertive with them in order to get what you need. They won’t help you when you need them the most, i.e., with helping to lift your loved one off the floor. I was told when I called the hospice emergency number after Ken fell early in the morning by the nurse that she was 5’2 and she would come but that she didn’t know if she would be able to help. She first asked if I had another family member living with me who could help. I replied that if I did I wouldn’t be calling!
Hospice isn’t set up properly in this country to help care for loved ones in the end stages of life and they rarely understand brain cancer patients, especially GBM. At times, it felt like they were just “checking in”, checking blood pressure, temperature & watching Ken for an hour or so to see if and when he would die. When I really needed their help in the final week of his life of course at night it was always an issue taking the nurse an hour or more to arrive. When the nurse did arrive she asked where his oxygen machine was and that patients with his condition should have one. So, the next day I demanded the equipment and it came in the early evening (suction machine, nebulizer, oxygen concentrator, and oxygen tank). My hospice nurse showed me how to use some of the equipment, stating that “you won’t need to use this at this stage”, which was the suction machine and in fact I did end up having to use that machine that evening. When I called later that night because Ken’s breathing had changed dramatically after I gave him some oral medication the nurse on call was instructed to call my hospice nurse. She called me back & condescendingly told me that she had shown me how to use the machine earlier in the day and did I remember but we did not hook up all the parts to actually use the machine. Then the on call nurse phoned me back to say her supervisor told her that if I didn’t know how to use the equipment that they would send someone out in the morning to evaluate if Ken did indeed need continuous care or not. She also said that she would come out if I wanted her to and she did. When she arrived she admitted that she wouldn’t have been able to instruct me over the phone how to use the equipment and she could see how I would have been confused especially since I wasn’t a nurse and didn’t have any experience.
The next morning I awoke to a phone call from the clinical care coordinator responsible for getting Ken the compassionate use of the CDX-110 medication. I had emailed her the day before that I had wanted to talk. I took the call in the kitchen to not disturb Ken since we were sleeping together in the same bed downstairs. After she hung up I heard a large gasp coming from Ken and I ran to help him. I quickly turned on the oxygen machine and put the tubes in Ken’s nose never having done that before either. I heard another gasp and at that point I believe that Ken passed. I quickly called our neighbor who is a Doctor for advice and realized that everything had changed. I sobbed hugging him for several minutes, looked up at him and he opened his eyes to look at me one last time and then closed them. I felt it was his way of saying to calm down and that everything was going to be okay which gave me the strength to do what I needed to do next.
At that point, I immediately shifted gears and called who I needed to call so that friends and family could come see Ken. He had over 35 visitors that day and I’m so happy that they were able to see him in our home rather than anywhere else.
I went to a therapist yesterday and she told me that watching your loved one die is a trauma and that I’ve been going through trauma for the past two years time. Simply knowing that your loved one has a terminal illness does not make the actual death any easier when it does occur. The pain of losing a loved one will never go away and it should not be ignored.