Wednesday, February 29, 2012

They Live On: Just Take Her

I am a horrible child. I sometimes wish death on my mother. No, I don't really want my mother to die. But this person who looks like my mother isn't really my mother anymore. And she doesn't even really look like my mother anymore. She has gotten older and has that blissful look of ignorance on her face now.

And it's not that she is ignorant. My mother was one of the smartest people that I ever knew. But this awful disease has been eating away at her brain. And as I have said a hundred times, she really has been the lucky one over the past year, not having to deal outright with my father's death. And she also seems to be having a lot more fun. My mom is definitely much sillier than she used to be.

But I know this isn't going to last very long. The disease is rapidly progressing. She doesn't necessarily know me when she talks to me anymore. She has regressed in a lot of her personal care, though she is still pretty independent. But she never wanted to be like this. Her mother had Alzheimer's and died when I was nine years old. For as long as I can remember, my mother dreaded the day that the disease would take over her life. And she literally fought its onset, kicking and screaming.

As she got worse, I never wished her any harm. But I actually looked forward to the day that she ran away from home, simply to expedite the process of getting her some help. We fought so many battles and hit so many roadblocks as we tried to get her the help that she so desperately needed.

People thought I was horrible for thinking these thoughts. You may also think so. But she ran away and she finally got the help she needed. Yes, the process also indirectly cost my father his life as he fell and hit his head as he was out and about getting the proper paperwork. But his health was poor enough that it would have happened to him sooner or later.

Like I said before, I also prayed for my father to finally go. I remember coming to visit him after being back in New York for three weeks to wrap up year-end parent-teacher conferences. I called the LTAC almost every day for an update. That weekend that I returned was Memorial Day weekend. I got there Friday night and went up to the hospital to visit him on Saturday. They had him sitting up in a chair. He was in so much pain, that he was clawing at the armrests, trying to stand up so that he could get back into bed. His eyes were not open - and hadn't been for six weeks. But they were pinched together in such pain. When I had arrived, I was expecting to find him in a better place. My first thought was, "I can't do this to him anymore." It wasn't right.

As the author of They Live On says in this chapter, you just want the healing to come. You would prefer that the healing would happen, instead. But sometimes it just can't happen here on Earth.

This book is also available from Yesterday's Muse.

Tuesday, February 28, 2012

They Live On: The Ministry of Presence

I had never heard of this concept in Part Four of They Live On: The Ministry of Presence. It is when you are with someone at the end of their lives. I have already talked many times about how beautiful it was to be there with my father as he took that last breath on this earth. He waited until I was distracted talking to the nurse. But I was the one who had that privilege. Unless something drastic happens with my mom, though, I will probably miss hers. And I do feel bad about that at times. I just don't know how to fix that right now.

This part of the book deals with Patricia having to move her mother to Hospice, as she has been given a prognosis of less than six months to live. It is time to start letting go. I hated going through that process. We picked the most beautiful of the facilities available to us. It is the same one that my great uncle was in back in 2007. That was another painful spring break. I had come home for Easter. He moved into Hospice the very next day and passed away the following Sunday. I was there every day, supporting his family. That experience helped me know what to expect with my father.

Dad was moved to Hospice around 11 am on June 2nd. He passed away at 10:30 that night. We didn't have time to enjoy the facility. Friends and family didn't have a chance to come visit us. Dad's pastor was planning on coming down the following morning. I felt like the only person who knew he wouldn't make it through the night. I remember calling a family friend and putting him on speakerphone so that he could talk to Dad for a while. I remember telling my aunts, uncle and sister that Dad was going to go that evening, just before they left to go have dinner. As they were paying for their meal, he slipped away.

Other brief parts of this section resonated with me. Patricia talks about hating her phone, though she used to like talking on it. I still don't like to talk on the phone. I have hated the phone ringing ever since my phone went off in the middle of the night when Mom ran away. It got worse the night I got the phone call from family members saying that Dad had gone to the hospital via ambulance. I spent countless hours talking to friends and family, coordinating information and phone trees. Everyone wanted to be informed as to what was going on. Doctors needed permission to perform certain procedures. Mom had an outburst and needed new meds. On and on and on the phone rang. All these months later, I am still tired of hearing the phone ring and weary of talking on it.

I also had a flashback when Patricia talked about losing her pet. When I was a kid, I had a dog named Snowball. We rescued him from a crazy house that had a dozen dogs running around. He was a small ball of white fur, hence his name. Dad always pretended to be less than thrilled that we had him and our other dogs. But over the years, as Snowball outlived other pets, Dad got quite attached.

I remember them bringing him out to NY on one of their visits. My poor baby was so old and arthritic that he had a hard time staying away from the puppies and getting up to bed. When my parents were getting ready to leave, I hugged my dog goodbye. He buried his head in my shoulder and gripped my shoulder with his claws. He didn't want to leave me. As my parents pulled away, he pulled himself up to watch me out the back window. He hadn't been able to do that in years. A couple of weeks later, I called home. Mom said he was pretty bad. I asked her to put the phone up near his ear. I told him he had been a good dog and I loved him very much. It was okay for him to go. The next day he couldn't walk. Mom and Dad had to take him to the vet to be put down. Dad was a mess for days.

I remember having a similar conversation with my father on that last day. I told him a hundred times how much I loved him and what a great father he had been. I told him we were going to be fine. It was okay for him to let go. I played "Goodbye" by Eddie Vedder and got ready for bed. He let go soon after.

This book is also available from Yesterday's Muse.

Monday, February 27, 2012

They Live On: Four, Please

In the third part of They Live On, Patricia focuses on her mother's radiation treatment for her brain tumor. She chronicles the struggles of dealing with the medical staff and moving her father to be with them. The reunion between her parents tugs at your heartstrings. I desperately wanted my parents to get together one last time. When Dad was first in the hospital, I would go visit Mom and she would ask me where Dad was. If I showed her pictures from my garden (one of the few things that would distract her from a tantrum), she was adamant that I needed to also show my father. And when she caught me wearing his ring, she chastised me like I was a little girl.

But we elected to not tell Mom that Dad was in the hospital dying. Her world was already confused and befuddled. We didn't need to put her through that added trauma. She would get the facts confused and relive the news time and time again. When Dad finally passed away, the nursing home kindly removed all newspapers from the ward that weekend, so that she wouldn't accidentally come across the news. Unfortunately, a visitor did leave a paper behind and Mom caught it; but she didn't fully comprehend what she had read.

Another brief entry talks about hanging out with her mom one night, eating Wendy's and carrot cake. The next morning, her mother contracted pneumonia. At least they had that night. That was how I felt the weekend that my grandmother had died. I was already planning on going home that weekend. I had gotten tickets to the Michigan-Bowling Green football game that Saturday. I have been a big Michigan fan since I was a kid and I went to Bowling Green. I knew I wanted to take my mother with me, because it would be our last big outing together. Mom and I were famous for our outings; but they were becoming more difficult as she deteriorated. Grandma died the morning I was planning to leave. But we went to the game anyway.

I chronicled that outing for last year's A to Z challenge in my Alzheimer's blog. That day, despite all of her confusion about where we were and about Grandma's passing, was one of the most beautiful days ever. It was one of my last great memories with my Mommy and I will cherish it forever.

My other great night was on New Year's Eve that year. Dad decided we were going to have one last great night out together. We went for a special prime rib dinner at a local restaurant. To hell with the cost. Mom was convinced that we were going bowling with her cousin and needed help ordering food. But the three of us had a decent evening. I had fun playing with my new Droid. Dad laughed when we had this picture taken of us and I sent it out on Twitter and on Facebook. "Ooh! I tweeted!" "You what?"

We knew it was going to be our last New Year's together. We just didn't know that he was the one who was going to leave us first.

This book is also available from Yesterday's Muse.

Sunday, February 26, 2012

They Live On: Your Mama Is Gone

"Your Mama Is Gone" is the title of Part Two of They Live On. It opens with the acknowledgement that even though her mother is physically still there at this point, the woman who had raised her and cared for her isn't really there anymore. She is a shell of her former self. And there is now a role reversal.

Patricia's mother developed a brain tumor. My mother doesn't have a tumor. She has Alzheimer's. A brain tumor that would simply take her away could almost be more bearable than this slow progression in reverse.

One journal entry in this part is about Patricia standing in the closet looking at her mother's clothes. She has no idea if her mother will ever require them. I remember coming home that spring break. The plan for my sister and I was to go through our mother's clothes. She often wore layer upon layer and wouldn't change for bed. I think she knew how to put on her clothes, but had forgotten how to get them back off again. Even if she did change, she didn't wash her clothes and became irate if you tried. So there was a huge pile of dirty, stinky clothes.

I did tons and tons of laundry over those several weeks. It seemed ridiculous to gather all of those nice clothes for Mom to wear in the nursing home. So, I took the best of the clothes for myself. I gathered another bunch of clothes to fill her small closet. She had enough to change at least once a day for two weeks. The facility would regularly do her laundry for her. The rest of the clothes went to Goodwill.

When it was time to go through Dad's things, I had to do the same. I kept numerous articles of his clothing. I wear his sweaters regularly even now. But so many of his clothes ended up at Goodwill. The whole time I was going through them and washing them and folding them to either go to Goodwill or home with me, I kept echoing the same sentiment: Clothes are stupid.

And finally there is the part about people dying of a broken heart. I truly believe that contributed to my father's passing. My parents had been married for 38 years. They were rarely apart for more than a couple of days. And that was usually when my mother had to go to the baby furniture convention for their store. My father was her primary caretaker. I remember going home for Christmas break that year. Dad slept the entire time I was home. He was completely exhausted. He knew that she was going to have to go into a home because she could barely take care of herself anymore. He joked about becoming a bachelor again. But, I don't think he knew how to handle it.

I remember crying with my father on several occasions as Mom deteriorated. This was a man who never showed emotion. I remember him crying at the end of My Girl and of Man in the Moon, and quickly leaving the room. The first time I truly saw him break down was when my two year-old cousin died in a freak accident. He broke down numerous times after his mother died.

I think losing his mother and his wife within only a few months was simply too much. I know it was is hard for me. He had the two of us, but we were in completely different states, living our own lives. People often pushed us to move back home. He and my mother shared the same sentiment: As much as they would love to have us around, they never wanted us to give up our lives and dreams to be with them. It was kind of like that saying about if you love something to let it go? We couldn't spread our wings and blossom if we stayed home with them. And that was okay.

I remember telling Dad when I finally had Mom settled in the nursing home that he originally wanted. He had gotten the ball rolling with the appropriate people just prior to going into the hospital. I remember seeing his body relax, even though he was unconscious. The same thing happened when he was in Hospice. His sister reassured him that Mom and my sister and I were going to be okay. He was able to relax. He was heartbroken, but okay with it all. He could let go.

This book is also available from Yesterday's Muse.

Saturday, February 25, 2012

They Live On: The Prologue

This quickly in the book They Live On, I can already see a lot of parallels between myself and the author, Patricia. Her father is the one who first became ill. Her mother had to bear the burden of caring for him. She fought to do what she could, to follow his wishes and to care for him, but still ends up being the one who leaves first. Patricia lives far away and cannot always come home to help out. Neither can her sister, who also lives far away. She and her sister do have that biological bond, but are different enough that it is hard to hold each other up. It's more comforting for both of them to speak with friends and strangers than it is to depend on each other.

In one part, Patricia talks about sleeping in her parents' bed. Her mother was unable to lie in the bed that she had shared with her husband for so many years. She had moved to the guest bedroom. So when Patricia visits, she ends up sleeping there. It brings back memories of when I went home that spring break. Before my father went unconscious, I was able to talk to him on the phone. He told me that when I came to town, I could go ahead and sleep in their bedroom during my stay, instead of sleeping in my usual place on the couch out in the living room. (Their spare bedrooms in this retirement abode of theirs were for offices and storage.) I stayed in that bed every night until after Dad passed away. I only stopped when I donated the bed to one of my former "kids," for her future apartment living in college.

It was comforting to sleep in the bed. Even though the sheets were clean, I could still inhale the smell of my parents, which had permeated the bedding over all of those years. It brought back a sense of comfort so familiar from during my childhood. Many a night did I end up in their bedroom if I was feeling sick or had a nightmare. I vividly remember my nighttime ritual as a young girl, reading books and hanging out in their bed until it was time to get into my own across the hall. Sure, everyone has those memories. But these are my memories from my parents in their bed.

Patricia also talks about calling her mother on a daily basis to check on her. I had gotten into the habit of calling my parents at least once a week as it was. Whenever Dad was really sick, I would call my mother more frequently. As my mother deteriorated, I spoke with my father even more. After she moved into her first nursing home, I did talk to him almost every day. We needed each other even more at that point. At the very least, we kept up with each other on Facebook.

Another part I really liked in the prologue is this paragraph from page 5:
How I handle - no, how I participate in - my father's death will define me as a person. I want it to be the best me, one of whom I can be proud when it's over. One who doesn't run from the agony, who doesn't shirk the duty. One who really feels the pain, who lets it hurt and does not seek distraction. One who gives him what he needs and puts all the old wounds aside. I want to be someone my dad is proud last.
As soon as the nurse told us that our father had pneumonia that day he went unconscious, I knew it was the end. Just a half year prior, his own mother passed away after contracting pneumonia. It's the way the elderly often end up going. My father didn't seem elderly - he was only 68 years old. But his body was so old and tired and sick after years of illness, that physically he was significantly older.

When they scheduled his brain surgery on April 19th, I knew that I would not leave him until he hopefully came out of the ICU or the other unspeakable and inevitable happened. That surgery happened over spring break, which was why I had gone home, anyway. My sister was home because we wanted to all be together for a happier time than our previous reunion the previous fall at Grandma's funeral.

When Dad didn't wake up within the next few days after his surgery and kept getting mysterious infections, I took the following week off of work. My sister had to go back West for her job. I lived within driving distance but couldn't bear to be gone. I went to that hospital every day. I checked in with the nurses at least once a day when I wasn't there. I held my father's hand. I talked to him. I read to him. I played music and movies for him. I prayed alone and with numerous people over him. Only while their prayers were for his recovery, mine were to end his suffering, no matter the outcome. Yes, I wanted my father to stay with me. But that was too selfish. It wasn't my decision.

They moved him out of ICU to an LTAC - long-term acute care facility. He was still essentially in a coma. But he appeared to be stable. The hope was that he would eventually come out of it. I went home for a few weeks. But then I got the phone call saying that they were going to run tests on the brain waves and some tough decisions would have to be made. I took off the rest of the school year and returned home the Friday before Memorial Day. On Memorial Day, I got a phone call from a friend whose mom was one of the nurses. Dad's eyes were finally open! It seemed like a hopeful sign. But, it was just the beginning of the rally before the end. That was also the same day that we were told that his kidneys were shutting down and we needed to move him to Hospice.

That was the point at which I vowed that I would be there at the very end. My father witnessed me coming into this world. I was going to be there when he left it. I told him repeatedly that I would not leave him. I know he was happy I was there. He often cried when I had to leave at night. And leaving was so hard to do. You can read more about that last day at "P is for Peaceful Passing."

After he died, certain family members kept telling me they were worried about me. I would rage and lash out. I cried. I ranted. But dammit, I had just lost my father. I am the kind of person who needs to feel every inch of the pain to get through a situation. I will wallow in it, like picking a scab over and over. But I have to feel it in order to heal. Just because you don't understand my process doesn't mean it is wrong.

I also like to mark anniversaries. It is another coping mechanism. And that is why I am doing this series.

This book is also available from Yesterday's Muse.

Friday, February 24, 2012

Journey Through "They Live On"

It has now been about a year since my journey of losing my parents began. My mother, who has Alzheimer's, ran away from home in the middle of the night on Valentine's Day. My father, so carefully trying to take care of her and get her placed in appropriate care, slipped and fell during the ice storm that week. He passed away June 2nd, partially due to that injury. Losing both of my parents essentially at once was never quite the way I had expected that chapter of my life to go. And I had just lost my grandmother the previous September. Nevertheless, it is what happened. I can't go back and change it.

Soon after I returned home from taking care of things related to my parents, an acquaintance of mine who owns a local bookstore emailed to say that he had a book for me. He was in contact with the author Patricia A. Nugent. She had recently published a book called They Live On: Saying Goodbye to Mom and Dad. He knew my story, of course, having followed my status updates on Facebook, and thought it may be appropriate for me to read. He gave me the copy and asked for my opinions on it.

I remember getting into my friend's car as we left the store. I read the opening lines and I had to put it down. I wasn't yet ready to read it. A few weeks later, I tried again. I still couldn't do it.

For the past several months, the book has been sitting within my sight. It has begged to be read, but I just didn't have the time nor the emotional wherewithall to take on the challenge. Just prior to my February break from school, my bookstore buddy emailed to ask if I had had a chance to read it. It was just the kick in the pants that I needed to try to undertake it again.

I have decided that it isn't going to be enough to just read the book. It is going to require a cathartic sharing of feelings and memories at the same time. So, pull up a glass of wine and a box of tissues and join me on my way through They Live On. I will write as the desire occurs, but will schedule the entries to only post once per day.

Thanks for joining me.

Monday, February 20, 2012

The Ugly Bug Ball

One of my fellow writers in the GBE2 group sent out a welcome to all new members that included a reference to the song "Ugly Bug Ball." I swear I am one of the only people in my generation who has any idea what this song even is.

It is sung by the great Burl Ives and appears in the Disney movie Summer Magic. When I was a kid, we subscribed the The Disney Channel. That was in the good ole days when you paid for the channel and quality programming was available. You got to watch all of the classic movies and TV shows and none of the crap that exists on the free channel today.

My family often recorded a lot of the movies to VHS tapes so that we could watch them again and again. My parents didn't want to spend money on movies, because we were paying for the premium channels. We all loved Hayley Mills and had many of hers recorded. One of them, of course, was Summer Magic.

A nutshell recap of the movie: Hayley Mills and her family are forced to move out to the country and start over after the death of her father. They are accustomed to a fashionable life; but their father made a bunch of bad investments and left them nothing when he died. They are thrust into a new way of life and a web of seemingly innocuous lies concocted by Burl Ives' character. It's full of family values, comedy and music. I can't tell you how many times my sister and I watched it.

What was almost as amusing as the movie itself was the fact that my father always seemed to walk into the living room from the store at exactly the same point in the movie, no matter when we had started it. And it was every time the song "Ugly Bug Ball" came on. It became such a running joke that I swear he was purposely listening for it just so that he could walk in!

I love this movie to this day and watch it whenever it is on. I do not have it on DVD, and I do not know why.

I also am a huge fan of Burl Ives in general, thanks to this movie. Most people don't seem to know who he is, or at least only associate him with the Christmas movies. But he was so much more. Check him out and relive childhood memories.