Dad’s physical condition was stabilizing, and he was eventually moved out of the cardiac ward and into the long-term care ward. His mental state continued to deteriorate. Sometimes he recognized me, sometimes not. He often thought I was his younger brother, whom he had nicknamed “asshole” when they were kids and fought a lot. So, frequently I was greeted with “hey asshole” when I entered the room. Most of the time, I just took it, but to the muffled amusement of the nurses, occasionally I struck back and told him that I didn’t “fucking appreciate being called an asshole, and that I deserved a little bit of respect.” Usually that brought him back to the present, and he realized who I was.
I often look for patterns and logic in all that I experience, and Dad’s dementia was no different. Through the patterns in his behaviour, I quickly realized that his dementia was causing him to time travel in his mind. When he thought I was his brother, I once asked him what year it was. He responded “1942”. The reason he often didn’t recognize me was that in his mind it was many years before I was born. This realization made it easier for me to deal with the times he didn’t recognize me. I realized that he hadn’t forgotten who I was, he just hadn’t “met” me yet. The hardest times were when he’d ask how Mom was, or even how my younger brother was. The first times that happened, I reminded him that they were both dead. He would look puzzled, then deeply sad, and I realized I had made him re-live the sadness and grief of their passing. I never corrected him again. I just went with it, and the answer was always, “they’re doing fine”. I can’t begin to describe how hard that façade is to keep up. My emotions were frayed, and most of the time driving home, I’d either cry or scream.
I usually visited Dad in the afternoons, since most tests or other things were done in the morning. I vividly remember one time I came in the morning to find his bed empty, and being neatly made up by an orderly. Immediately fearing the worst, I ran to the nurses station in a panic, telling them that I thought I had asked to be called if something happened. They told me he was just downstairs for some tests. I’d usually arrive mid-afternoon, feed him dinner, and spend the evening. As family, I could come and go as I wanted, and I usually stayed until 11:00 in the evening when I’d finally get him to go to sleep.
He suffered from frequent panic attacks. I was increasingly becoming the adult in the relationship, and he the child. He had been Superman to me all those years ago when I was a little blond kid scrambling up a dangerous rock slope when we were on a hike, protecting me, making sure I wouldn’t fall–I never knew how much he feared for my safety on that particular hike until years later when I was an adult and he related the story to me. Now, I had to be his Superman. I hoped I was up to the task. Occasionally, I would take a day off from visiting him, and go for a long drive out into the surrounding countryside. These were my ‘re-charge’ days. I had to force myself not to feel guilty about them. I always feared that that would be when something would happen. But, I needed these days. I had to learn to love myself–something I had not really ever done before, and still have trouble doing–but I’m getting better at it.
When Dad was first admitted to the hospital, I signed all of the papers, as it was quickly determined that he lacked the capacity to do so. Subsequently, as his mental state deteriorated, the doctors consulted exclusively with me, and I made all of the decisions as to his care, including what measures to take to preserve his life if things began to take a turn for the worst. Years ago, Dad and I had discussed this very thing, and he explicitly said he never wanted extraordinary means taken to prolong his life. He had seen his own mother decline over a period of several months before she died, and he did not want the same for himself.
So, in accordance with his wishes, I had a DNR (do not resuscitate) order put in place. I wondered as I signed off on all of this, was I signing his death warrant, so to speak? I had never before been responsible for someone else’s well-being (I do not have children), and here I was, making these decisions for my father. I felt like, “what gives me this right?” I often wondered if I was even doing the right thing. To a person, the local Christian Science church members assured me that I was doing the right thing for him, as did the doctors and nurses at the hospital. This was in stark contrast to what my Christian Science teacher, and supposed “spiritual mentor” had said.
Dad and I received a lot of support from the local Christian Science church members, many of whom visited Dad in the hospital frequently. I will always fondly remember one Sunday after church, about two weeks after Dad first went to the hospital. The room was filled with almost the entire membership of that church. Everyone was laughing, and enjoying real and genuine fellowship. Dad was in there right along with them. These people were true and honest–the way Christian Scientists should be, and not weighed down with judgement, dogma, and the idiocy of Christian Science ‘culture’. Unlike my Christian Science teacher, they did not abandon Dad simply because I sought to get him the care he needed.
Hospital counsellors also began to prepare me for finding him more permanent care. I had to face the fact that he was not going to be going home, and there was no way I could care for him. He was going to need ’round the clock care. He was going to have to spend the rest of his life in a nursing home. The prognosis at that point was that once his physical condition had completely stabilized, he could be released, but his mental condition was not expected to change. The dementia was here to stay.
I remember driving home from the hospital so many times, wishing that he would either recover or pass on. I knew he couldn’t bear to live in his current condition, and I couldn’t bear to see him that way. I also decided at that point I was going to leave Boston as soon as I could and live near Dad so I could oversee his care and be with him. I didn’t care if the economy was bad and I probably wouldn’t easily find a job. Stuff like that just didn’t matter anymore to me the way it once did. I realized what was truly important in life, and that is the people in your life.
I also received tremendous emotional support from another unexpected place: some old acquaintances from high school. Until this point, I had largely lost contact with almost everyone I knew in high school, but thanks to Facebook I had renewed contacts–often now with folks I had not really been that close to when we were in high school. When I posted about what was happening in my life, some of them shared their own experiences with losing one or both parents. Just the fact that someone else out there knew and had walked the path I was on was incredibly comforting. This was so contrary to Christian Science, which doesn’t offer even the slightest bit of empathy or understanding; just the coldness of denial. These people became a new circle of friends, many of whom I now keep close contact with now that I live near the area where I grew up. As I stated in Part 2, it was one of these friends who had brought me to the sweat lodge ceremony months earlier after Mom died. She was the greatest support–just barely a year earlier her own father had passed away. She knew the path I was on. She was walking it–just a little bit further ahead.
About a month after Dad was first admitted to the hospital, about four days before Christmas, Dad stopped eating and taking liquids. The doctors asked me if I wanted him to be fed and hydrated intravenously. I told them ‘no’, to let nature take its course. I knew that without food or water, he would not likely last a week. A healthy person can last more than a week, yes, but not someone in his condition.
On Christmas Day, I came to the hospital in the morning to spend the day with Dad. I was invited to my friend’s place for dinner with her and her family, so I planned to leave around 4:00 pm for dinner, then come back afterwards and spend the night. This was the first visit when Dad neither said anything to me or even looked at me. I don’t know if he was even aware that I or anyone else was there. I sat quietly with him. Sometimes I read him a favourite hymn. At 4:00, I left to go to my friend’s place for dinner.
We had just finished dinner. It was around 6:30 pm when my cell phone rang. It was the hospital, and deep down I knew what they were they were going to tell me. They informed me that Dad had died sometime within the last half hour, between rounds when nurses had last checked on him. Dad was 79 years old. They asked me if I wanted to see the body. I said no, that it was an old suit he was no longer wearing. I don’t remember if I cried right away. I remember just being in a state of shock. I left shortly for the hospital, and checked in with the doctors and nurses and gathered up his personal effects. They were all deeply saddened. He had been under their care for a month, and some had grown attached to him, despite his stroke-induced irritability. I had so often enjoyed their company too, as interactions with Dad during my visits became more disjointed as his dementia deepened. Dad always had a way with people, he was always able to draw them in and make them feel at ease. I have always been envious of that. He was the kind of person who could walk into a room filled with strangers, and quickly become friends with all of them. I tend to be more like my Mom was–very introverted and somewhat uncomfortable around strangers. I always envied my father’s abilities with people. I think it sprang from a genuine love, respect, and acceptance that he always had for others and a feeling of security in who he was.
Early in January, I performed the last task my father asked of me. I scattered his ashes on the ocean, near where we had scattered Mom’s just 10 months earlier. For most of the time I knew Dad, he had always said he wanted to have his ashes scattered in the Canadian Rockies near Banff, Alberta on Mt.Temple, a mountain he had frequently climbed during his college days when he worked at a nearby resort. I had always known it to be one of his favourite places. I remember joking with him once that, “well if you croak in the winter, you’re going to sit on the hearth ’til summer! Otherwise, there will be two of us buried on that mountain: one in an urn, the other in a snowsuit.” That was the way we often joked with each other–we’re part Irish, after all. But, after we had scattered Mom’s ashes, he told me “I want to be with her.” He asked to be taken to the same place we buried Mom.
I was alone now, and Christian Science was no longer any comfort to me. I knew I was rapidly drifting away, but at that point I didn’t think I’d completely leave, let alone ever speak out against it.
Please see the epilogue to this post for additional reflections on this story.