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!

Organic Mama over at The Life and Times of Organic Mama tagged me for this photo meme.

In case you are not familiar with this, it means that I was supposed to open the sixth folder in my picture file and post the sixth picture from that folder. (Like she obediently did in her post.) Well, nothing is simple for me…

The sixth folder for me was from two years ago. (Don’t even ask why that is still on my computer.) It was in October when I was visiting Missouri. It was the trip in which we put my mother in Hospice care. The sixth picture was my daughters, and I have been hesitant to put full frontal face pictures of them online. I thought about moving to the seventh picture, but the whole folder is “people” shots, and the ones of my mother at that point in her life, I am not sure I am ready to share with the world.

Sooooo… I moved to the seventh folder. The seventh picture was Chic and her gymnastics class for their Halloween party two years ago. Again, pictures of my kids, other people’s kids. I could not post that. The whole folder was filled with more of the same.

SOOOO… I moved to the eighth folder. (Why am I telling you all of this? Why did I not just pretend I was posting from the sixth folder when I really was not? I am just weird like that, I guess.) This was from Chic’s and my trip to Disneyland almost exactly two years ago…

200811-192006-11-27_7caadventure

Three or four years ago when I was at someone’s house doing a stamping workshop, there was a conversation about the grandparents taking every one of their three children to Disneyland when they turned five. I loved this idea because I thought five would be such a magical age. We knew nothing like that could ever happen in our family, so Prince Charming and I talked and talked and decided I would take Chic when she turned five, and PC would take Chicklet when she turned five. (At this point  Chicklet was ony 2, a huge handful, and I knew I was getting the best bargain!)

So Chic and I went to  Disneyland on her fifth birthday. We were not sure we were going to be able to go, even though flights, hotels and everything were arranged, because we had spent the previous two weeks in Missouri with my dying mother. We drove back here on Saturday and flew to  California on Monday. Disneyland with a 5-year-old is everything magical it should be. It was one of the best experiences of my entire life. Just Chic and me, and we had so. much. fun! There was a roller coaster in California Adventure that we rode 27 times in our 3-1/2 days in the parks. We saw all the Princesses except for one up-close-and-personal.

The picture above is from the afternoon we arrived. We threw our stuff in the hotel room and decided to explore as much as we could the first day. (It did not matter that we were starving.) Our hotel was closest to California Adventure, so we went there first. The ferris wheel reflecting in the water was the first thing that captured our attention. We rode it and many other things. (The ferris wheel actually made me a bit nervous, but Chic LOVED it.)

We packed so much into those 4 days and returned home on Friday. Sunday morning my mother passed away. I am not telling you this to put a pall on anything, because it was not like that. To me that is an important part of the story because we had spent every second with her possible until our trip for Chic’s birthday. We were half dreading that she would die while we were at Disneyland, but I made a decision to just enjoy my time with Chic (my mother would have wanted me to) and put the bad things in the back of my head. We did that and had such a wonderful time. Call it God (I do) or fate or whatever, but the timing of things let us have the best of everything that autumn. We had the last “quality” time that anyone would ever have with my mother. (“Quality” is a very relative term.) Chic and I had the best time of our lives as mother and daughter at Disneyland. We got back home just in time to return to Missouri for the final respects for my mother. All things work together…

Mom's Donkey

Mom's Donkey

Yesterday I went to a funeral.  It was for a man from my church who suffered from a stroke about three weeks ago while recovering from a long illness.  He was a funny old man. 

It was the second funeral I have attended since my mother passed away in early December of 2006.  The other funeral was for a dear friend who passed away unexpectedly.  He was like a grandfather to Chic and Chicklet, especially Chicklet (who we have previous established has special relationships with men).  His funeral was in our church.  The one yesterday was in a funeral home.

Yesterday’s funeral had a couple of things that I thought were unusual.  The first was that there was a social time afterwards in the funeral home (which is what was completely new to me) that had appetizers–potluck style.  Chicklet was with me, and the service had already cut severely into her nap time, so I dropped off my dainty tidbits and left.  The other thing was that the during the service, the funeral director pulled every card from every floral arrangement and had the greetings read to the entire group sitting there.  Although I was not offended by this, I can think of a few reasons why that might not be a good idea.  It also took a very long time (cards were being pulled as the reading was happening).  We were already well past an hour of actual service, and Chicklet (age 4) was about fed up with quietly sitting still.

But through all of this, I did not mind being at the funeral home…

Funerals are not something I like.  OK, who likes them?  But I detest funerals.  By the time I turned eleven years old, I had been to well over 25 funerals that I could remember.  My father’s aunts and uncles were old.  My parents helped out old people.  We just seemed to be connected to a lot of people that died, and I had my fill of funerals at an early age.  Personally, the necessity of funerals had escaped me.  I have never thought I needed a funeral for closure.  To me they are mostly a time of misery.  A few forced laughs to check the flow of tears periodically, but overall not something necessary in my world.

Funerals are, however, necessary for most Americans, so whether you like it or not, when someone dies, there is usually going to be a funeral.

When my mom died the funeral was three days after her death.  Due to the circumstances of her death, and knowing what she would have wanted, my father, my brother and I decided to do it quickly and simply with no fanfare.  My mother’s family did not appreciate this at all and made the whole thing a big ordeal by their interference.  Their wishes were not granted.  (This is a completely different story, but they spent a lifetime making my mother’s and father’s lives miserable, so I was pretty firm about not bowing to their desires.  It was just their desires, and I knew it was against everything in which my mother believed.)  Since that time they have on their own done things to make my mother’s passing more to their liking, but at the time it was not at all to their liking. 

I was not with my mother when she died.  I knew she was going to die, and I had been there eight days before.  Had she lived I would have returned four days later, but I did not live close, and it was not possible for me to be there the entire time.  As we were driving back to Missouri after we learned of her passing, we got countless phone calls from my mother’s family, my mother’s caretaker and my father’s family all telling their side of whatever story and why we should do this or this or that, or complaining about some other party that had been calling us.  As was often the case before her death (years before), everyone was mad at everyone, and I was supposed to fix it.  At this time I probably was the logical person because my father and brother had been in the thick of things until the end, and neither of them had the emotional stamina to deal with selfish people.  Because selfish is what they were.  The reasons given why we should do this or that was never in consideration of my mother, her husband or her children.

Apparently, these people will never learn that it is unwise to order me around.  Making absurd demands of me, especially at a time like this, meant that I would do the exact opposite, if that was possible.  The only reason those people got anything the way they wanted was that I was on the road when my dad was at the funeral home, and he caved to one demand–to have a funeral.  (I would have had a private graveside service, which is what my mother wanted.)

Funerals are never pleasant events, and they tend to bring out the worst in people.  I do not think that was the case with my mother’s funeral because her family always has their worst on display.  For some crazy reason my mouth would still drop open at their unbelievable selfish behavior (shouldn’t I have been used to that after 41 years living around them?), but they were no different at the funeral than in daily life. 

Since I hated funerals, I was truly dreading this one.  I did not want a bunch of people comforting me.  The circumstances of my mother’s death (she had a 9-year illness that rendered her unable to take care of herself all those years) meant that I would have to put on the fake smile to many insincere people offering condolences.  Maybe some were truly sorry about our loss, but many ditched both of my parents when my mother’s illness began.  I have always been honest (brutally honest in the opinion of some), not false.  Politeness in this case would call for being deceptive, which I not only dislike, but think is wrong. 

The funeral went better than expected.  The family room at the funeral home was open to my dad, my brother, my mother’s caretaker, me and my family.  The other family was irritated that they were prohibited from being there, but their irritation was more than fine with me.  When it was over, I was relieved and just happy to be done with it…

Back to yesterday.  As I sat in the funeral home, I was comfortable.  It was not anything about it specifically (the sound system was bad, the decor was extremely dated, the service was too long and had odd additions to it), but just being there.  I thought about it the whole time I sat there and finally came to the conclusion that it was comfortable because I connected it to my mother.  The last time I had been in a funeral home, it was for my mother’s funeral.  It was after her life ended, which had not been so wonderful for many years, and she was finally at peace.  The last time I saw her face (with WAY too much make-up; she did not wear makeup at all) was in a funeral home.  Seeing her lifeless form was not a comforting experience, but the last time I saw her face before that, it was wracked with pain and pleading eyes.  She could not talk for several years before her death, but her eyes communicated quite clearly.  Near the end her eyes spoke of fear, pain and “PLEASE LET THIS END!”  So I guess when I saw her again, she was at least in a restful state.  No more pain.  No more family garbage.  Just rest. 

So as I sat there yesterday, I suppose my reflections were what they should have been at my mother’s funeral, had that time not been laced with so much emotion and family political posturing.  I had time to process and be comforted.  It was nice.

by Louise Cannon