It is incredibly challenging to care for someone who is dying, much less to be the person dying. Neither is an ideal way to live and none of us know how long the process will take for us. It is the unknown that often makes the caring more difficult. Since we do not know what will happen and how long it will take, we are in a perpetual state of waiting.
My GG, Fred, was 93 when he died and yet he had been ready to go for at least a year before that, and likely much longer. Upon turning 89, he chose to not renew his driver’s license, turned his truck keys over to my Dad, and said simply he was done. That was it. No discussion, no explanation, no tears, no nothing. He knew my parents would transport him as he needed and would get what he wanted and needed when he was not up to going out. But what began to happen after that was where the struggle began.
Fred no longer had a will to live and said as much. He was tired, uncomfortable, and missed my Grandmother. Later in life he had an old World War II injury received in combat that began to cause him more pain. It was a physical reminder of the terror he endured in the Pacific. Though he wanted to forget that experience and enjoy his memories of my Grandmother, it was ever-present and truly a throbbing alert to his past.
He began to sleep a lot and no longer had any interest in watching the NASCAR races on TV or completing the NY Times crossword puzzle or reading books and magazines. This is a man who while he lived in California for most of his adult life, he planned his annual vacations based on the NASCAR races and would drive East to see the ones he wanted. For him to hold no interest in these events was significant.
GG became incredibly compliant with activities he had not previously cared to engage in – bathing, hair cuts and shaves, changing clothes, and eating. Months before he was clear when he did not want to participate in any and there was little we could do other than encourage him. Then, he began to seemingly just give up and give in. He did not fight us or resist or complain. He just participated as he could.
Though never one for much conversation, GG could not do much of it any more. His hearing had been going for some time and he never felt he needed to get hearing aids. He was not inclined to spend the money nor did he see a need for them. It did not matter that the rest of us had to yell for him to hear us; he did not feel he needed them, so he did not get new ones when the old ones no longer worked. We resorted to a notebook to ensure we were still communicating. We wrote him simple notes he could verbally respond to since he could no longer write well.
This note process worked well. We would ask his preference for meals or if he felt warm enough. Sometimes we would tell him that his great grandkids were there and would come see him. Other times we had to share with him the news of his daughter-in-law’s death from cancer and his neighbor friend’s sudden death. These are not the sorts of things you want to dialogue with via a notebook, but it was the only way to ensure he was still engaged in his life – the good and the bad, the ups and the downs, the pleasant and the difficult.
Physically we noticed that GG began to “shrivel up”, was cold all the time, needed less food and water, and was tremendously unsteady walking around his little apartment. He was simply tired. It was more difficult for him to sit up for a haircut or he would fall asleep at the dining table. He wanted only to stay in bed or in his recliner and sleep. Having been a very astute, intelligent, active man, it was clear that his light was flickering less brightly and less frequently. The light was fading for him.
Emotionally, he began to tell us how much he appreciated what our family was doing to take care of him. This is something GG never would have done in his prime. He rarely offered compliments or gratitude. In fact, he was often an unpleasant little man to be around. I described him as a “tightly wrapped little German man” – at just over five feet tall and with an intense, technical, directed kind of mind, he was not one for banal chit chat or for time with others who were not as bright as he was. He had no tolerance for those around him he did not approve of and lived on his terms regardless of the others in his life and their needs.
GG was not an easy man to love. Early memories were not pleasant and he was never the warm, engaging granddad we all want and some have. However, as he aged and had few people willing to tend to him as he dictated, he became a shell of who he had been. Seeing someone age so profoundly was striking and humbling.
He became and old man who was sad, limited in his abilities, and quite simply in need of help. GG missed my grandmother and I think he missed the opportunities he’d had to better connect with others. He was no longer the defiant, self-assured, strong-willed individual he had once been and was dependent on others for the most minor of human needs. It was a remarkable transformation and one deserving of good care and love as he was willing to accept it.
The process was slow. Once he began to fail, it was just a few years until he died. But for my parents, GG’s primary caregivers, there was no end in sight. Not that they wanted him to die, but that there was simply no end in sight. They were in their late 70’s by the time he died and they too were tired. GG did not suffer from any certain ailment that would offer some phantom timeline. He was not afflicted with any acute bouts of illness we could better anticipate his future health. GG just kept going and though he was flickering out a little at a time, he did continue to have some light in him.
The days and weeks were not difficult with him as he was gracious and accepting of whatever my parent’s needed of him. He ate what my Mom cooked (which he always liked) and never complained about any meals or had issues with his living arrangements. But, there was never any end date. My parents had simply NO clue how long this was going to last and were fearful that it would wear them down too much too fast. My sisters and I helped as we could and were also concerned about our parents, but we were simply the “fill in”. Our parents were those with the day-to-day 24/7/365 care with no end in sight. They were the ones who did not feel comfortable leaving their own home for a short trip away, even when we were there with GG. Our parents were truly dedicated and did the right thing by GG for the end of his life. And he knew it was a gift.
GG had moments when we felt he was doing well and seemed to perk up a bit. His light would flicker on and even at times it was bright and clear. Then he would go back into himself and we wondered how much longer he would live. It was this flickering that made things challenging for those around him and no doubt for him as well. He had good days and bad days, up days and down days, happy days and sad days. He too did not see an end in sight.