I was notified on Facebook that two people – a 32 year old friend and another friend’s 61 year old husband – passed away this week. Facebook is probably the only way it was possible to share this news though it’s hard to hear about a death this way.
I didn’t know either person was sick and because I was not in daily contact with the families, I wouldn’t be likely to get updates. The family or caregiver usually has other things to do than provide updates even though I notice that some share online or blog updates as an illness progresses.
Sometimes the caregiver is criticized for not constantly calling everyone to give status updates. I know I’ve had to deal with this criticism as the caregiver for my husbands. I did the best I could and hoped that family members and friends would spread the word. I guess it wasn’t good enough for some. In the end, what I did had to be good enough. Following is an abbreviated account of my experience as a caregiver and my thoughts on those things I believed to be important as I cared for my husbands at the end of their lives.
Richard was diagnosed with pancreatic cancer and admitted to the hospital early in December of 2004. I had no experience with this kind of situation but accepted my place at the hospital by his side. He was angry and depressed about his prognosis and I wanted to keep him from getting too depressed while he fought the cancer. I had lived with him for long enough to know how to deal with his moodiness as his condition worsened. Staying with him meant isolating myself from the world but as he made it clear that he wanted me with him all the time, it wasn’t a difficult decision to make. I slept in a recliner next to his bed or on a pull-out bed when he had a private room. Much of the time was spent watching TV with him or watching him sleep as he was heavily sedated with morphine.
Richard was “the” biggest fan of the Christmas holidays so I decorated his hospital room with a tree and decorations and I read Christmas cards to him that came in the mail. A week before Christmas, one of his relatives called to invite me to the annual Christmas party at their house. When I told them that I couldn’t attend, I was told that I needed to get away from Richard for a while. I knew that 1) Richard would have wanted to attend the party, and 2) he would want me to stay with him. I chose to skip the party. I left the hospital for very short periods during the day and, upon my return, I was told that Richard had been asking when I would return to see him. I had seven weeks with him after his cancer diagnosis.
Stephen was diagnosed with a non-cancerous (but life-threatening) fibrosis early in 2012 but his lung cancer was not found until he was hospitalized in July. By that time, it was a Stage 4 cancer and his physical condition was poor due to complications from the fibrosis. I remained vigilant about his care at home before he was hospitalized and soon realized that my usually independent-minded husband wanted me to be with him around the clock.
I spent days and nights in the hospital with Stephen leaving only to go home to take a shower and pick up mail at our house. I lived at the hospital with him and continued to take care of our normal life – paying bills, handling Stephen’s legal and insurance matters and my job hunting with the aid of a laptop computer and the hospital wifi connection. I was always at the ready though when he needed me to reposition him in his bed, call the nurse for pain medicine, speak to the doctors and therapists about his treatment and/or my concerns about his condition, order his meals for him, translate his verbal requests for the hospital staff who couldn’t understand his accent, to list just a few daily tasks that were needed. I learned to clean and suction his trach tube and took care of other more personal needs for him as he became bedridden. And just as I had done with Richard several years before, I’d climb into Stephen’s hospital bed from time to time to hold him and give him kisses.
I kept in daily contact with Stephen’s family and friends – even his ex-wife – by text message and phone calls and encouraged visits from them. Two or three of them told me I didn’t have to be there because Stephen was “a big boy who could take care of himself” but I knew better than that. He was depressed and anxious as numerous surgical procedures and chemotherapy contributed to his rapidly declining condition. Stephen became dependent on me as his wife and advocate in addition to the excellent care he received from the nurses and doctors in the hospital. When the “two or three” suggested that I take some time away from the hospital, I refused and stayed by his side only leaving for an hour a day to go home to take a shower. After Stephen was intubated and trached, I didn’t think he should be left alone at all and would not go home unless someone came to visit. Sometimes that meant that I wouldn’t get a shower for two or three days. One day, a visitor told me that she could stay for three hours and that I could take my time away from the hospital. Stephen couldn’t speak, but his anxious eyes and his hand gestures were quite clear – he wanted me to come back as soon as possible. I appreciated the time any visitors gave me to get away for an hour just to take a shower but preferred to come back to the hospital as soon as possible to be with Stephen. I lost Stephen seven weeks after his cancer diagnosis in the hospital – yes, the same time period I had with Richard after his diagnosis.
I understood that relatives or doctors meant well when they told me that I needed to look after myself. I learned a few things about myself when taking care of Richard and Stephen. I didn’t need as much sleep as I thought I did and I found that I could sleep sitting in a chair when necessary. I found a voice I never knew I had when I stood up to and removed Stephen from a nursing home after less than a 24 hour stay due to inadequate care and inhumane treatment and also refused to allow the 2nd hospital to make me leave him during the evenings. I took regular breaks to get food and coffee from the hospital cafeteria so I had the energy to be awake as needed throughout the days and nights. I could sit still for long periods of time watching Richard or Stephen sleep and not get bored. I felt it was important for them to have someone there when they awoke. I learned that what was important is what the patient wanted. Caring for them was never a burden to me.
As for my emotions during my time as caregiver for each of them, I’ll admit that there is nothing that could have prepared me for this journey. I felt their terror (it became my terror as well) and I felt helpless as their pain and discomfort increased. I tried not to let them see me cry but I know they saw me praying for them during the night. As much as everyone tried to provide for their comfort, I watched both of them fight to the end and neither of them passed from this life peacefully. I will never be able to erase from my memory the experience of being there during the final moments of their lives.
Every patient and caregiver experience is different. I will always feel that I could have done more for Richard and Stephen. I have felt like such a failure since I was unable to nurse them back to health. I wondered why my prayers for a miracle went unanswered. I know these thoughts are irrational as there is nothing I could have done to heal them. But I continue to have those feelings. If they could, Richard and Stephen would tell me I did what needed to be done.
I remember one day in the hospital when Stephen was feeling melancholy and he said to me, “I want to make it up to you. This is no life for you.” I told him, “You don’t have to do anything. I want you to feel better. This is my life now – with you.” The hospital had become our home.
The time I had at the end with Richard and Stephen was short. I wanted every minute with them. They wanted every minute I could give them. What they wanted was most important to me.