Moon when we arrived at my dad's house on December 4, 2006

Moon when we arrived at my dad's house December 4, 2006

I have warned you that there is a 10-day (actually 11 if you count the first day) of family events in my life about which I will post. Today’s is the fourth of five. Tomorrow will be the last one.

This one is the toughest because it is not a happy topic, and most of the time I am a pretty happy person. I tend to look on the bright side of things and make the best of the worst circumstances. This story does not really have a bright side–or at least I have not been able to find much of one. And also, there is no way to tell the whole story at once which is why I do not know how to say it; there is way too much to say.

This is about my mother’s death. I have thought long and hard about why I want to tell her story, and I have come up with some reasons; however, I am not positive they are reasons to tell it. I believe there are things to be learned from her illness and death on many, many levels for any type of person, and that someone needs to tell her story because she could not.

My mother died on December 3, 2006, 9 days after her 65th birthday. She had been in Hospice care since October of the same year. My husband, my girls and I visited for a few days in October, then I returned with the girls for two weeks in November. Had she survived, I would have returned in mid-December.

When she died, she weighed about 80 pounds. During her “good years” and even during most of her illness, she had been overweight. She was tall and big-boned, so she carried her weight well. She was active, too, so that helped, but she was never thin in my memory of her. For her to be reduced to 80 pounds was a horrendous thing to see. She also had several bedsores, the largest of which was more than an inch deep and was about 10″ long and 5″ wide. (Once we brought Hospice into our lives, they provided a different mattress that we could  not procure before, and there was slight improvement in the bedsores before her death.) She had little ability to show emotion, and when these awful wounds were dressed two or three times daily, she could not cry or moan or move away. She sometimes flinched almost imperceptibly.  My worst memories may always be the witnessing of the changing of dressings. I never personally did it because I did not live there and was not accustomed to it and did not want to learn how to do it when I might hurt her more than those with experience.

So what killed her? I have mentioned before that she had been declining for ten years prior to her death. About 8-1/2 years before she died, she was hospitalized with seizures. This event was a turning point downward for her. It would be weeks before we knew what caused the seizures, but she never got better after that. For a while we believed she would get better. Some days were better than others, and we clung to those threads of hope as if they were our lives. I do not remember when it happened, but one day we all sort of realized that she would not get better, that we had to enjoy each day for what it was and make the best of it, because that might be the best day we ever got with her.

So the seizures did not kill her, though sometimes I wondered why they did not and wished they would have so her life could have ended quickly and painlessly rather than the many years she suffered afterwards. But we did realize along the way that although her quality of life was not what she wanted or would have chosen, it might have not been as bad as it seemed at times.

After the seizures, she began talking less and less, and within three years, she did not talk at all. Either the seizures or what caused them affected the part of her brain that houses the “executive functions.” That means she could not decide to do something. She could not decide to respond and could not decide to get up and walk to the bathroom and could not decide to pick up food with a fork and move it to her mouth. She was “all there” mentally, and we could see that in her eyes, but she could not communicate much at all. Once in a while we could see a slight smile at the corner of her lips, but usually the only type of emotion she showed was in tears, either happy or sad.

Because of my mother’s changed demeanor, most of her friends ditched her. In fact, pretty much all of my parents’ friends ditched both of them because “We just can’t stand to see Kate in this condition.” For ten years almost all of my parents’ dearest friends avoided them because they could not handle seeing my mother. This is one of the lessons I have tried to gain from this experience. It does not matter how uncomfortable a situation might be to ME, I must think of the person in the situation and how much more uncomfortable it might be for them. I could see the pain in my mother’s eyes when I took her to church with me and people walked hurriedly as far away as possible, as if they did not see us.

To avoid sounding too saintly here, I must say that there is no one… NO ONE… associated with my mother’s illness and death that handled everything gracefully all the time. I know I had my own frustrating moments. One I remember vividly (and with significant shame) was when she was staying with me (I used to keep her at my house one or two weekends a month to give my dad a break), and I was brushing her teeth. She clenched her mouth shut over the toothbrush, and I could not get it out. I tried to get her to open her mouth, but she wouldn’t/couldn’t. I finally pulled very hard and yanked it out. Handling that gracefully might have meant sitting down beside her and talking about something funny or just waiting until whatever it was that told her to open her mouth happened. But full-time care of anyone can wear on a person’s nerves and patience. It showed in everyone from time to time, some more than others.

In the midst of all of this we had my mother’s family to deal with. Most of them have been antagonistic toward my father, and then me, for all the time of their acquaintance with us. There was no support from them during all of this, only insults and accusations. I learned as a child to avoid them because they did so much damage to how I felt, but my father did not learn the same lesson and succumbed to their attacks. He always tried to make them happy, knowing that there was nothing he could do, for his mere existence made them unhappy. The relationships with my mother’s family made my mother’s situation, and dealing with it, so much worse.

So what actually killed my mother? She starved to death. How undignified is that? And what is worse, the family (including me) had to make the decision for that to happen. She was going to die anyway. She could not swallow food without aspirating on it for the last few weeks. We had to decide to let her choke to death or sedate her and starve to death. We thought sedation was more humane. (This decision was made with the help of our Hospice staff that was invaluable to us during this time.) Deep down in our hearts, I believe we all wanted her to just not wake up one day so we would not have to make such a horrible decision, but it was not meant to be. There was a time 1-1/2 years earlier where she nearly died from an infection. My family was driving to Missouri, and she was not expected to live until we got there. When we got close, we learned she was still alive so went straight to the hospital at 4 a.m. She not only lived, but lived normally (for her state of decline) for another 15 months. I often wonder why she did not die then. Her life by this point was devoid of much of anything good, but she could still walk and go places. I do not know how much she enjoyed that, but I have to think there were still lessons to be learned from her being with us longer. It just seems that she was meant to die in a terrible way.

In the end, we were glad for her death because we know she was in terrible pain the last few months. And really, I am not sure of what was supposed to be learned from such a miserable, drawn-out dying process, but I think everyone in my childhood nuclear family somehow gained a little strength and character from the experience. I wish those lessons would not have been so tough to learn, especially at my mother’s expense, but I refuse to believe they were in vain.

I want to write about why she had the seizures in the first place and what was going on in her life before that, but apparently I am not ready to do that yet. From my perspective, my mother’s death could have been prevented. There were no natural causes. She was physically healthy her whole life and barely ever had colds, let alone anything life-threatening. Her illness was inflicted upon her, and there were so many places in her life where it could have been stopped, but it was not, either from selfishness, maliciousness or ignorance. Truth be told, it was a group effort to kill her. Definitely not intentional on probably anyone’s part (though some did not care if they damaged her with their selfish agendas), but all of us close to her, and my mother herself, probably played some part (big or small) her illness and death.

Come back tomorrow for something a little more cheerful!

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