Sunday, August 17, 2008

Five years ago

Today, marks the day that my mom will have been gone for five years. She passed away in my house after a battle with pancreatic cancer. The Navajo believe that it is bad luck for a person to pass away inside a home as the soul of the person will remain in the house unless it can escape through an open smoke hole or window. I know that my mom had a lot of superstitions about the dead, but not this one. It was her last wish to die at home and it was a wish that I was able to provide. She spent the last several months of her battle with pancreatic cancer in and out of hospitals, convalescent hospitals and emergency rooms. To this day, I cannot imagine going to an emergency room for anything but a near death situation. My sister and I joked that we were going to write a book critiquing the hospital cafeteria food in all of the places we had been. I also wish I had started a blog at that time to document what we went through with my mom's medical insurance.

I had never heard of a "discharge planner" before, but that is the person whose job it is to kick you out of the hospital as quickly as possible, no matter the state of your health. This is so medical insurance companies can keep their books in the black, after all, it is a business. And businesses are in business to make money. In fact, my sisters and I all clearly remember the day a discharge planner told us this. They wanted to discharge my mom from the hospital because they were losing money on her. We were in the hospital family conference room and I remember us all looking stunned and not quite comprehending what we were hearing. Did she just say what I think she said?

I don't remember my word for word reply to this woman, but I'm not exactly afraid to speak my mind, and I believe that I gave her a piece of it that day. But, it didn't end there, this was pretty much a constant, daily battle each time she had to go into the hospital. The discharge planners would question us to make sure that we were not delusional about my mom's health. Each time, we assured them, yes, we know that our mom is terminal, yes, we know she is going to die, yes, we know that there isn't any hope, however, that doesn't mean you can discharge her until she is over her current health emergency and stabilized. One day, another discharge planner who seemed like a nice man informed us they were discharging our mom that day. Really, I replied, isn't the specialist coming to see if she needs surgery in a couple of days? He didn't know because he told us that he hadn't read her medical chart.

Now, let me tell you that all of the discharge planners I have ever talked to are registered nurses (RN) with a 4 -5 year degree specializing in nursing, not touchy, feely, counselors. So, I asked the man who was wanting to discharge my mom without having read her medical chart, just what exactly do those letters, R.N. behind your name stand for? So my mom remained in the hospital for a while longer and I didn't see him again, well as our discharge planner. When he did see us, he just looked the other way. But it was pretty much a battle every day where some family member had to go to the hospital (yes, every day) to make sure she had proper care or wasn't being discharged in a couple of hours. Eventually, they did discharge her from the regular hospital and into a convalescent hospital. My sister had held off the discharge to a convalescent hospital for a while until one was found that was acceptable and within convenient driving distance to us so we could see her every day.

What goes on at convalescent hospitals is another post entirely, really. I swear, all the women nurses were menopausal, 20 degrees hotter than all of their patients and in control of the thermostat. The workers who are not nurses were paid minimum wage to wash and clean up, get water, help those who can walk to the bathroom and clean up a lot of poop. So they don't get paid a lot, and lots of their patients are cranky. And a lot of them (lots and lots) call in sick on Friday and Saturday evenings. I can't imagine why, but, I'll save this topic for another day, as well as a long rant on the quackery that is alternative medicine (yes, we went this route, too, for a while. It is only for the desperate and we were.).

But finally, the day came when she was holding her own enough to try a test run and spend an entire day away from the convalescent hospital (We took her on occasion to a close by K-Mart or restaurant for a break from the freezing temperatures). I had to promise to bring her back in the evening. It was the 4th of July. She loved to sit in the plastic, white lawn chairs I would line up in front of my house and watch the neighborhood kids set off their sparklers and fireworks. We both felt we could handle the care and she could come home. But, in the meantime, I had to take her back to the convalescent hospital that evening. I think that this is one of the hardest things I have ever had to do in my life. She didn't want to go back and I promised her it was for just one more night. She didn't want to go back to her refrigerated room, she wanted to come home.

Well, not to her home. My younger sister had said she would take her in but had to back out. My mom had been working so hard at getting well enough to come home that I took her to my house even though it was and still is not a house for a semi-disabled person. She had strict rules. She couldn't go into the living room unassisted because it had a sunken living room (I had always wanted one and they are so dangerously stupid). I removed it when I remodeled my house after she had passed away. I didn't want her to fall and break something because then she would have to go back to the convalescent home and that would be the end of any home stay. We found an angel who would come and keep her company a couple of days a week and I tried find someone else to fill in the days while I was at work so she wouldn't be home alone. Yes, my own mother now needed daycare.

I think that in caring for my mom, she eventually became like my child, the child I never had. I had to fuss over her, make sure she had day care, change her still unhealed wound bandages daily and after she had an accident, clean her up. I never thought I would be able to do this. In fact, I spent a lot of my life resisting it. But, I am so glad that I did take care of my mom and make her last wish come true. It is truly one of the most satisfying things I have ever done in my life.

Now, if all of this seems sad to you, please let me tell you that I can say all of this without crying.... now. But, it took a lot of time and frankly, talking to people about my loss. You can't keep grief bottled up inside you or it will never go away. While my mom was sick, I made a conscious effort to never take a photo of her because I didn't want to remember her looking so ill and different. After she passed away, I couldn't look at flowers or go to garden nurseries without thinking about her and crying. I avoided certain streets. I would be so angry when I drove by one of the hospitals where I had taken her or so sad when I drove by a restaurant where we had taken her or bought take out to bring her in every effort to have something appetizing for her to eat so she would live just a little while longer. And, she fought so hard to live.
Our time spent together was so ordinary but so precious. That is what happens when you know that death is close by. Sometimes, my sister and I still get angry when we remember some thoughtlessness committed by someone who should have loved her more (and I now don't celebrate the 4th of July anymore) but mostly we try to learn lessons from her life and passing and to remember all the things we loved about her.

Her passing let her live again in our memories as we choose and to tell funny stories about her that make us laugh. I can't say that she suffered (thanks to pain medication) but she wasn't living life the way she wanted. She didn't like being a bother and hated not having control of her functions. I remember going to the funeral of a friend's mother-in-law years before my mom passed away. His wife had taken care of her mom for years as she descended into dementia and eventually, didn't even know her own daughter. His wife couldn't stop crying at the funeral. Frankly, that was a mystery to me because her mom had become increasingly difficult to handle and finally, had to go to a nursing home (not the same thing as a convalescent hospital or assisted living). Now, she would be free to have her own life again. But, after my mom passed away, I understood her grief. Her mom had become her helpless child, someone whose life depended on the decisions she had to make and whose responsibility it was to make sure that she was receiving the best possible medical care she could get. When her mom's body died, she could finally begin to grieve for her mother, who had really died mentally years before and also begin to remember her mom the way she was when she had been herself.

So, please don't be sad for me. I didn't post this today to help myself or my own state of mind, but to help any of you who may be going through something similar. If you are young enough or lucky enough to never have experienced this yet, you may someday and I hope you'll remember some of the things I've written and I truly hope it helps you. And am I worried that my mom's chindi (spirit) may be lurking around the house? The answer is no because her loving spirit lives in my heart and can be found in my fondest memories.

P.S. I find many cultural similarities between the Navajo and Japanese.

And, P.P.S. I don't know if any of you have heard of Randy Pausch, the professor from Carnegie Mellon University, who died recently from pancreatic cancer at age 48. He wished his diagnosis had been for hepatitis or AIDS as he would have lived longer than having had pancreatic cancer. My mom lived 8 months after her diagnosis and he lived for 1-year after his. Interestingly enough, they thought he had hepatitis at first, as the doctors did with my mom until their final diagnoses. The Last Lecture video has been seen by more than 6 million people so far.

And, P.P.P.S My mom had a sort of obsession with vacuum cleaners, usually expensive ones. After I accompanied by mom's body to be cremated, I stopped at the shopping mall. I had no reason to go and I don't like going to the mall. But, there I went and found myself buying, of all things, a vacuum cleaner. Go figure.


Fabrizio - ikol22 said...

Very touching. My parents are 88 and 82. They are fortunately quite well but you see... Reading this so moving tribute I also realize how you are and were devoted to your mom. This is my feeling too. So... Grazie per aver dato voce anche ai miei sentimenti [thank you for giving voice and words to my feelings too]

homebody at heart said...


You are lucky to still have both your parents and in good health. And they are lucky to have you, too! I wish you and them many more years of good health and happiness!