From the moment we are born we begin to die. As we grow and mature we begin to choose how we want to live our life. As I took on the task of caring for my mother in law, I looked back on some of the things my husband would say to me. My husband is categorized as a quadriplegic and I met him while he lived in a nursing and rehabilitation center. My husband always told me that it was like living in deaths waiting room. It wasn’t unusual for him to say things like that so I would just chuckle and move on. He was the youngest one living there at the time so it made sense that is how he saw it. People would come in never knowing how long they would be there or if they would leave in a car or a gurney. Eventually we secure a home of our own so he moves out of the nursing home. I didn’t really think much about my husbands comment until I myself realized how true his words were. He spoke of the nursing home being deaths waiting room, but in reality it is the entire world around us. As humans we naturally try and stay busy so we never even notice that each day we are creeping closer to death. We never notice the first wrinkles, the grey hairs, or the age spots until there are too many to count. Death can sometimes come quickly, but very often it is a slow drawn out process. Each persons body giving out in a different way and at different times.
Very recently my home became a portal for my mother in laws continued journey beyond life. I had never watched or waited for the arrival of death prior to this and it was an arduous process. In the beginning the signs were subtle and it almost gave you hope that death was further away. The first very noticeable change is appetite. Very often the person won’t want the foods that they have loved for years and will only want junk food and sweets. I had done all my research so I knew better than to get into a food battle with my mother in law. My mother in law had always been very health conscious so sometimes it was hard to watch her eat and chug down soda on a daily basis. Although the cancer was starting to affect her brain there were still glimpses of her old self when she would read the ingredients on something I was trying to feed her. She was already very weak at this point due to extreme weight loss so I welcomed any calories she was ingesting. The next thing I began to notice was her forgetfulness and issues with her bowels. I know that lack of nutrition can affect a person in this manner but I knew it was also the cancer which was in her spine.
Even once my mother in law went on Hospice the signs were subtle and often deceiving. She fought valiantly each and every day to find reasons to be happy. Everyday she woke with a smile and a shout to the world. The entire process on hospice lasted about two months but it felt like a lifetime. My mother in law had already advanced to the point of adult briefs and a catheter so in a way that eased some frustrations for her. Unfortunately, this caused new frustrations because she felt like she was a burden to me. Within the first week of hospice my mother in law became completely bed bound and that was her biggest complaint. She hated cancer but she never let that get her down as much as being stuck in bed did. She was a vibrant person who loved the outdoors and life in general so being in bed was hard for her. Nothing would keep her spirits down for good though. Not even the series of seizures she had could stop her from wanting to live. Twelve hours later she snapped out of her coma like state and began chatting away to me. It was two thirty in the morning, but what did I care? She was alert and alive and that was a miracle because even the nurses didn’t believe she would pull through. No one knows what caused her seizures but we do know that her oxygen was extremely low at the time. She was receiving her oxygen order when it all happened and never had another seizure afterwards so it was safe to say the low oxygen probably contributed.
After her seizures her memory got noticeably worse and she became obsessed with the day, dates and time. I put a clock up where she could see it and a few people brought her notebooks and calendars to help write her memories. For the next several weeks she wrote birthdays and anniversaries and left little notes for God. For me this was one of my favorite parts of her journey only because she became very happy and childlike as she talked about things she wanted to remember. I like to imagine that she was a lot like that when she was younger and when I looked at some of her photographs, I believe I was right. A lot of her child like behaviors were a combination of her disease and the medication but it gave me a glimpse into the complexity of the brain. I once worked in a Dementia facility so I recognized all the same behaviors of repetitiveness and reminiscing. All of these behaviors continued for several weeks and she would go through periods of wanting to eat to not eating at all. It was my own observation that she seemed to be wanting to do things that she thought would keep us happy. The nurses told us that eventually, no matter what, her body would stop wanting food or water. This was hard for the family to accept and they would ask her often if she was hungry. I believe that she did a lot at the end simply because she thought it was what we wanted. It was also hard to determine what was real and what was made up at this point because her mind was so gone.
My mother in law had lost her ability to move her legs several weeks back now and felt almost no pain. The nurses attributed this to the disease penetrating her spinal cord. This was honestly a godsend but for her I think it was an awakening. She would often say to her son that now she knows how he feels being in his condition. Eventually, she stopped having the ability to drink without choking and she had already stopped eating. We knew it was only a matter of time but we didn’t want to give up. Although her eyes were still open and she knew we were there, she had stopped communicating verbally. I could still see all the love she held for us in her eyes and I knew she was thanking me just as she had everyday before. We attempted small syringes of water to hydrate her but even that began to choke her. How do you prepare yourself when you know that you have to allow someone to die? How do you stop yourself from trying to keep her alive when you know she is no longer living? I knew deep down that she couldn’t go on forever but I still had that hope in my heart. The nurses gave us pamphlets and advice on what to look for when the end is near, but they warned us everyone is different.
Once my mother in law stopped eating and drinking she slipped quietly into a coma like state. Everyone continued to visit her and a few of us stood vigil in hopes that she would open her eyes and tell us that she was hungry. This never happened. Each night we would mourn thinking it was her last, and each morning we would wake up to do it all over again. It was like a sick play on the movie Groundhogs day. No one could ever prepare you for the torturous job of watching death hover just above your loved one. After five plus days in a coma like state her eyes were sunk in, her skin was shallow and her mouth hung open as if begging for a sip of water. The medicine had begun to build up in her mouth because she wasn’t swallowing anymore. We knew it wouldn’t be much longer. I stayed up until one in the morning to give her the prescribed syringe of medicine while her sister tried to sleep. She would be up at three in the morning and I would be up again at seven. That was our routine so someone could always monitor and give the meds. I Had my alarm set for nine in the morning even though I knew her sister would be up by then. I hit the snooze on this morning because I was exhausted and wanted just a few more minutes of sleep. I was up by nine thirty and I stumbled out to see if there had been any changes with mother in law. When I gave her medicine at five in the morning I noticed her breathing was a low, slow pant. Her sister tells me she observed the same and I responded by saying “I think today is going to be the day”. As I said that, her sister tells me that she tried to close her jaw. I jokingly say, “oh she’s probably telling me to shut up”, but her sister reminds me that she never wanted me to stop talking.
My mother in law never wanted me to stop talking because at the end it reminded her that she was alive. I immediately went over to hold her hand and her sister stroked her hair. I told her that she did a great job and she fought hard. I told her it was okay to let go because I was going to take care of her son. I believe in my heart that she heard my words because she brought her jaw up into what looked like a smile, and she took her last breath. Sister and I both cried from heartache and relief. Heartache because the beautiful soul that was a part of our life was taken too soon, but relief because she didn’t have to fight any longer. I watched the entire procession of death and I finally understood what my husband meant. We are all in deaths waiting room and none of us know when our time will come. My mother in laws waiting room is empty now, but she left things that will always remind me to make the best of my life.
Kelly Kasper (Blake)
“The things you do for yourself are gone when you are gone, but the things you do for others remain as your legacy.”
― Kalu Ndukwe Kalu