My dad was a throwback to a simpler time. A time where people used candles and there was no such thing as TV and food was made from scratch. Like the Victorian era. So, when he was dying, he refused to get a hospital bed. He was dying on the blue velvet antique settee. Jim tried very hard to get him to see that a hospital bed would be much more comfortable. Jim didn’t understand that my father was not giving up. My dad figured his terminal cancer was simply a matter of mind over matter. Getting a hospital bed meant giving up. And also, hospital beds are ugly. Do you think Queen Elizabeth died in a hospital bed?
But in the end, the hospital bed was delivered and I took up the blue velvet antique settee as my bed, as it was right next to the hospital bed. Jim slept in the blue leather wingback that was also a recliner. NOT your average Lazyboy.
Dying is not a very structured process. It is not predictable. At least not for those of us who have never done it before. Hospice gave us a general outline of how the end would look. But they didn’t give us details. Back in the day, people attended to each other during the dying process and so they would know what to expect and what the stages of death were and pass on that knowledge generation to generation. But in modern times, hospitals and professionals have taken over those roles and they keep the specifics to themselves. So, when my dad chose to die at home, Jim and I had no real idea of what that was going to look like.
About a week and a half before my dad died, he was determined to get out of the hospital bed and use the bathroom. He was a very dignified man and he didn’t want to be someone who had to use a bedpan. So, everytime Jim or I left the room, there was dad swinging his legs over the side of the bed and teetering off to the bathroom. The thing was, he was about 100 pounds and had stopped eating anything real months before so his walking was really more like luck. At one point, I walked in as he was attempting one of his bathroom hikes and he looked at me and afer gathering a bit of strength he said to me “Turn your head. I am without pants.” This cracked me up, but did nothing to deter him from his bathroom expedition.
A few days later, he decided that he needed to go to work. His business, which was about a mile from his home, the funeral home, was being run by his business partner. It was right smack in the middle of the village and on a warm May afternoon would no doubt have lots of people strolling by. My dad was going to get in his car and drive there. There was no stopping him. I tried to bribe him, lie to him, beg him, physically stop him from leaving the house. This is one of those typical things that dying people do. They get a huge burst of energy just before they actually give up to the process and there is nothing that can stop them. The worst part was he was again “without pants”. So, as he was headed out the front door I was getting him to step into his pajama bottoms. I finally caved and drove him to the funeral home (remember this is his business, I wasn’t just dropping him off to some random funeral home). It was just me and dad. Jim was running errands and dad didn’t like any of the home health aids Hospice had sent. So, it was down to Jim and myself and dad was having paranoid delusions concerning Jim so really, it was just me.
I got dad into the passenger side and I hopped into the driver’s side. Dad turned to me with tears in his eyes and said “I love you for doing this for me.” What he didn’t know is I totally understood his overwhelming desire to get out. Get out of your skin, get out of your head, get out of your life. I knew those feelings.
So, off we go to the funeral home. I took the long way, which was about 2 seconds longer than the short way. I tried the whole way to convince dad that we didn’t really need to go there. He was already losing steam. I explained that his business partner might be there, or a family making pre arrangements or the people on the street would see him in his pajamas. Things that he normally would have rather died than let other people see him in this condition and not in his right state of mind. But that day, he no longer cared.
He explained to me how we would go in the back door. This was such a bad idea. The back door led to a set of stairs. I got him in without anyone seeing us. He crawled up the stairs and into his downstairs office. I went to get him a glass of water and when I came back he was laying so very still, I was sure he was gone. His breathing was so shallow. I got down on my knees to rub his back and he looked up at me and said “I’m not dead yet!” and smiled. Again, this is one of those things that Hospice does not tell you how to respond to. I just smiled back and said “Ofcourse not dad!” We talked some more about different things. Life things, past things. We actually laughed and then we cried. I was scared because I knew this was not what my dad wanted. He didn’t want to be the crazy guy who took off in his pj’s on some crackpot idea that escaping the hospital bed meant escaping death. Then again, he was having the best time he’d had in at least a few months. Our final adventure.
After about an hour of him floating in and out of consciousness and me not being able to get a hold of Jim, I asked dad if we could call the ambulance. It was obvious to both of us that there was no way we were going to be able to get him back in the car. As it was, his pain meds were wearing off and he no doubt had bruises from crawling up the stairs. I had brought the supplies to keep him clean but didn’t think about bring the pain meds.He relented when the pain became intense and I called the ambulance.
When they got there, I finally broke down. I couldn’t in front of my dad. I had to stay strong in his delusion that he was fine and going to be fine. When the EMT’s came, I left dad to their care and went into the other room and cried. I wish Hospice had a pamphlet about these kinds of situations.
When I came back, they had dad on the stretcher and they were asking him about his pain level. He was smiling between the grimaces. Ofcourse, two of the three EMT’s were cousins and the other one was an old friend so dad was trying really hard to be the man these people knew him to be. Gracious, smart, compassionate to others joking and always with the smile. No one knew that dad had deteriorated to this extent which was exactly the way dad had wanted it. But now, everyone knew and I felt like I failed him.
They took dad and I waited for Jim. When we got to the ER, they had dad’s pain under control but wouldn’t keep him as his Hospice directive was to die at home not in the hospital. This ticked me off. I mean, obviously Jim and I needed some help, some direction, some professionals to step in and take over! But no, because dad said no hospitals when he was in his right mind, no hospitals it was.
How were any of us supposed to know back then how bad it was going to get? I had a birth plan with my first baby that said I didn’t want drugs. What the hell did I know? After 13 hours of labor (ok, after the first hour of labor) I knew I had made a mistake and I needed drugs. I was pretty sure I needed a C-section. Anything to get that baby out of me. And those professionals fought me because back when I wasn’t in labor, I had a brilliant idea that I didn’t need drugs or want them. Hospitals are not big on changing your mind once you’re into the process.
Dad wanted no one near him except me. On our way home, he turned to me and said “Well, it didn’t work, but I’m glad we tried” and I knew exactly what he meant.
A few days later, Jim and I decided to take shifts. We relieved each other every two hours during the night and 4 hours during the day. On my off time I would crawl into dad’s big queen size bed and try to sleep. I was doing just this when Jim came gently knocking at the door. He stuck his head in and said “I think it’s time.” Funny how similar giving birth and dying really are. So, I pad out in dad’s terry cloth robe and Jim and I stand over dad’s hospital bed, watching him breathe. Very shallow breath. His eyelids fluttering with every inhale. I took dad’s hand and I said “It’s ok dad. We’re here. You can go. We love you.” and Jim leaned down to give him a kiss. Dad’s eyes opened and he looked at us both and he said “Thanks. Where do you think I am going? I can’t get out of this bed without you two trying to talk me back into it.” and he turned his head and went back to sleep. It was not time. Jim and I walked into the kitchen and giggled silently, tears streaming down our faces.
Hospice leaves out alot of details that could be helpful. Or maybe they did tell us but in the midst of accepting death is on it’s way and the medication procedures and the insurance ramifications and the pain and sorrow, we just didn’t hear about sudden bursts of strength or delusions or paranoia or the death rattle. We did the best we could with what we had. And we did laugh alot. At the situation, at ourselves, but never at death. Death is not funny.
Death, like birth is a unique experience. Both are life changing. Both have elements of happiness and sadness. Both are celebrated and neither can be avoided. And you never know what it will actually be like until you are in the middle of doing it.We are all born and we all die. That is a fact. Today, we have many, many choices as to how we are born and how we die. But no matter what we chose, the end result is the same for both. Life and death.
Hospice is a wonderful organization. But they should have a pamphlet titled “Turn your head. I am without pants. How to casually slip pajamas onto your loved one before they escape the house.”