CHAPTER 1
Hospice Day
Waiting in a life full of stories for a death to come.
— Charles Bukowski
Our entry into and exit from this world are the only moments when what is real, true, and vibrantly important about life comes into undeniably crystal-clear focus. And usually they happen in their own time, which is often not a convenient one. Especially the moment of death. It comes under no one's rule but its own.
While my sisters and I were moving along in our lives filled with our individual trials and tribulations, my mom Wanda's death forced itself into our lives. My middle sister, Sherry, was still in the throes of deep grief over the loss of her husband to lung cancer just six months prior.
Donna, my eldest sister, had to balance her full-time, demanding career while caregiving her father-in-law as he struggled with Alzheimer's himself. He passed peacefully at home with Donna and her husband, Bill, as his loving caregivers.
I was still reeling from a forced medical retirement in 2010 due to a rare form of degenerative muscle disease called mitochondrial inclusion body myositis. It leaves me with so little energy I often need a scooter for most outings. Even doing the dishes can crumple me to the floor. Into this arena came the reality that my mom's life story was in its final chapter.
Excerpt from my personal journal February 2013
I have to face it. My mom's life is fading away. I feel like I'm watching a candle flame slowly diminish from oxygen deprivation. An apt analogy as the congestive heart failure deprives her brain and body of life-giving oxygen.
Mom's lived in an assisted-living facility for the last five years. She has more room in her little studio apartment than she had at my house. There's a lovely little kitchenette with a small sink, refrigerator, and microwave on the left as you enter her room.
Around the corner you see her bed, dresser, and a mandatory bookshelf for this avid reader filled with her favorite books. She has a comfortable, red, reclining rocking chair and two other rocking chairs for guests. There are three beautiful windows on the east side of her room with a lovely view of the lawn and gardens beyond. Off to the right of her bed lies her wheelchair-accessible bathroom with a large, roll-in shower. Soft, neutral, beige tones decorate the walls and floors.
Everything she needs is conveniently close. It's a perfect fit for her. She is content here. I am so glad she likes it. She was no longer safe being home alone while my husband and I were away at work. Due to her dementia, she spends less and less time enjoying the many activities the facility provides.
For the most part, it's an adequate care home. The furniture and decorations reflect a quiet elegance. There are always fresh flowers in the lobby, which opens into the dining room. It has tall windows reaching across the entire west wall from the floor to the cathedral ceiling. The smells of home cooking often waft through the entryway, especially on holidays.
Mom's staff caregivers see her every day and usually only long enough to deliver her medications or remind her of meals. Because she spends most of her time alone in her room, they do not see the increased confusion, inability to dress appropriately, and a growing weakness that leaves her struggling with exhaustion getting from her bed to the bathroom just a few short steps away.
I believe her weaker body signals that Mom is moving to late-stage congestive heart failure. She's so intelligent and convincing in her delusions that they do not recognize that her stories, like having been born with a clubbed foot, are the product of an Alzheimer's demented mind.
I am supposed to take Mom to see her neurologist, but she is so weak that I cannot get her there by myself. I call her doctor and explain what I am witnessing. We discuss that she often can no longer find the right words to express herself, leaving her angry and frustrated. Her intelligence remains clear enough that she knows her brain isn't working, but she can't understand why.
He says, "When they lose their words, it's my signal that it is time for hospice." I call my sisters. It's a weird moment to be discussing the reality of our mom's impending death.
The facility staff gives me the impression that they think I'm premature in my decision to follow her neurologist's advice to declare it's time for hospice. I know the staff is simply not paying attention and my protective genes go into overdrive.
I contact the local Legacy Hospice team myself because more than a week has passed and I have not heard from them. I explain that I don't believe the facility staff is paying attention. They don't notice the dramatic changes that I see. I visit once or twice a week. To me, she's in a downward spiral that grows more evident with each visit.
I explain to the hospice intake nurse that it's the congestive heart failure running its course more than the Alzheimer's that has me concerned. She takes a second look at Mom's medical information, which substantiates my concerns. We meet the next day and officially enter her into the hospice program.
Present-Day Reflections
Wanda Rueger passed away on June 26, 2013. It seemed a painful death and one difficult to watch. This woman, the one who birthed me, took care of me, argued with me, and sometimes hurt me, had become nearly infantile herself.
Though her death was difficult for me to witness, it was time. She was eighty-seven years old and in mental turmoil and constant pain. It was time. But still, she was my mom, and I miss her, even though the mom I had known had been missing for the last few years.
I had to go through my grief and mourning before I was able to confront the memories so vividly rekindled as I read through the pages of our journal. I needed time to heal and rediscover my identity as someone who is no longer a caregiver for her elderly mom, a role I had taken on after my father's death in April 1996.
February 25, 2013 Glenda's Entry ~ Hospice Begins
Dear Mom,
Today we entered into the final chapters of your life. Last fall, we made this journal for you. We write what happens each time we visit. You have Alzheimer's and often don't remember the last time you've seen us. You have the delusion that it has been months if not years since we last visited.
At times you don't always know who we are, though you have the feeling that you should. Then memory returns and you fall into despair that you didn't know your daughters. It's okay, Mom. We're here with you anyway, and we understand.
We were all here today to meet with the hospice team and sign the papers that officially declare we have entered into your end-of-life journey. I feel sadness and a bit of shock that we are finally here, but I also feel relief. I'm glad to know your difficulties are coming to an end.
I am relieved to know that our pain and stress, as we watch you disappear, will be over soon, too. And it is helpful knowing that your hospice team will be here to support us through this difficult journey.
I had a dream the other night that makes more sense now. I glean much of my support and guidance from the natural world. In this dream, the sun was setting as I watched a small black bear disappear through a waterfall.
I remember thinking in the dream as I followed, "If Bear can do it, so can I!" Behind the waterfall, I landed on a big conveyor belt.
The only choice I had was to hold tight and hang on for the ride to wherever it would carry me. Today, I feel as though I just went through that waterfall with you, Mom. Your weakness from the congestive heart failure and dementia has been steadily increasing, and now it's time to face the inevitable. I'm on board for wherever this death journey takes us.
We daughters are now taking turns visiting so that one of us is with you every day. We read to you from this journal to help you understand what's happening and to help you remember who we are.
Our First Entries into Mom's Book October 2012
I was born Donna Sue Rueger in Salina, Kansas, on October 23, 1950. You were twenty-five years old and Arvon Rueger, our dad, was almost twenty-nine. It's fifty-nine years later, and now my name is Donna Bennington. You have continued to be a woman I look up to, depend on, and admire. Just a few years ago, when you and Dad lived near my husband and me in Hillsboro, Oregon, I was always leaving my car lights on. Of course, my battery would die. Who would I call to rescue me? You, of course! My loving mother would always come to my aid. I love you!
I was born Sharon Kay Rueger, nicknamed Sherry, on April 21, 1952. We lived in Natoma, Kansas. I am your middle daughter. When I was born, Donna was eighteen months and you, Mom, were twenty-six-and-a-half years old.
When I was a little girl, you made special fairy and butterfly costumes for me and a special cupcake birthday cake that spelled my name. You often made clothes for me and drapes for the windows. You were very creative!
I am now sixty years old. I love you, my very special mom!
* * *
I was born Glenda Lynn Rueger on November 7, 1956, in Plainville, Kansas. You used to call me your little blonde Indian because my olive skin would get darkly tan and my hair was almost white-blonde. You were always very intuitive, and I find it interesting that when we all had our DNA tested, I was the only daughter to show a small percentage of Native American blood.
My favorite memory of my early years is how you would play cards with me every night after supper. You always made our birthdays and Christmases such fun, beautiful days!
When we lived in Kansas City, you and I took singing lessons and sang in the church choir together. You were thirty-one when I was born. I will be fifty-six next week and am married now. I kept my maiden name and am now called Glenda Rueger Payne.
Today is your eighty-seventh birthday. You were born on October 30, 1925. We all came to have cake and ice cream with you, and we made you this book. We want you to know how very much loved you are!
February 25, 2013 Sherry's Entry ~ Hospice Day Continues
Your three daughters were all here this afternoon to meet with the hospice nurse for your assessment. We stayed with you after your nurse left. Glenda showed you a picture of her cats snuggling together, which made you laugh. Donna read from the book by Lilian Jackson Braun, The Cat Who Robbed a Bank.
You sat in your red lounge chair for a long while until you were ready to lie down and nap. It was just before 3:30 p.m.
Present-Day Reflections
Mom, as I watched you sitting in your red chair that day, I knew you didn't understand what was happening. We all three surrounded you along with your hospice care coordinator and intake nurse. At times you disappeared behind the blank, glassy look in your eyes.
Even though I could tell you did not understand what all of the fuss was about, it seemed that you enjoyed being the center of so much focused attention. The hospice staff told me that a boost in energy is typical after enrollment. They discontinued all of your non-comfort related medications. One of us started visiting you every day instead of only once or twice a week. Your hospice nurses also frequently visited. It may be that all of the attention and medication changes were responsible for your renewed vitality.
At times, I wondered if I had been premature in my insistence that you needed hospice care, even though the doctor ordered it. It soon became apparent that I had made the right choice. It was a strange, overwhelming, and yet very precious time.
I will be telling our story, including the unpleasant details. It's important to share the reality of what happened. The miraculous moments are made even more brilliantly clear when contrasted against the darker, painful ones.
Witnessing your body disintegrate along with the personality I knew as you was the most frightening and exhausting task I've ever undertaken. It was also, by far, the most miraculous and rewarding. I am grateful for the experience and for having known you as my mom.
CHAPTER 2
The Unwanted One
People will hate you, rate you, shake you and break you. But how strong you stand is what makes you.
— Author Unknown
November 7, 1956, marked the arrival date of the third daughter born to Wanda and Arvon Rueger of Plainville, Kansas. My oldest sister, Donna, was six, and Sherry, my middle sister, was four and a half. Being only eighteen months apart, they were very close. They did not welcome this noisy brat of a little sister.
Years later I found out Sherry felt she had lost the dad she worshiped as his attention diverted to me. Donna and I have never spoken of her feelings about my birth. Though I remember some moments of fun and play between us and a fight or two, we didn't get to know each other until after she left for college. I'm assuming she was not very pleased.
Mom, at thirty-one, was not thrilled either. As the wife of the town dentist and a career woman herself, she was frustrated merely being housewife and mother. She had inherited too much of her own mother's resentment against a culture that did not accept women as capable and intelligent enough to have a career beyond their duties of raising a family. She abhorred housework and found it unequal stimulation to her own brilliant scientific mind.
She was so looking forward to getting her life and freedom back when Sherry was old enough to attend kindergarten that fall. But while she was busy making her plans, I happened. I was a total surprise given that they had difficulty conceiving the first time and felt lucky to have two beautiful daughters. My parents never expected a third child. Suddenly, Mom was looking at four more years of being housebound with another rather colicky baby girl.
I remember very clearly being little enough that I am sitting in the grocery-cart basket as Mom shops. I'm too young to have many words yet. As I watch her grumpily sorting through the packages of meat, I know that she is not happy and that I must not do anything to call attention to myself. She seems angry a lot of the time.
When I am three, we are in the kitchen. Mom is in that grumpy mood again and very focused on the nasty job of oven cleaning as I sit on the floor beside her. All I know is that I am bored, and I want her to play with me. So I reach out and give her a pat on her bottom. She ignores me. I laugh and pat her again. She still ignores me. So I pat her yet again, a little harder and laughing more loudly. Without a word, she grabs me and spanks me hard and puts me to bed. I'm left alone, hurt, crying, and not understanding why my very presence seems to make my mom so angry.
I already felt unwanted and unwelcome by mom's behavior. My two big sisters contributed to my feelings by ganging up and teasing me relentlessly. I continued to feel unwelcome throughout my childhood. I remember thinking several times, "If you did not want me, why did you have me?" I frequently wished I had never been born.
My dad often displayed an unpredictable, violent temper. I remember being around three or four. Mom was gone. I loved hearing my dad's great stories. He also enjoyed making us laugh. So we were snuggled in his bed, and he was telling me funny stories.
He heard Mom come home and asked me if I wanted to stay there or return to my room. I said I would stay there, thinking that they would come and be with me soon. But as time moved on, I became bored. I remembered he said that if I made the decision to stay there, I could not change my mind and go to my room. But that did not make any sense to me, so off I went to my bed and sleep.
Suddenly I was awakened by Dad demanding I roll over so he can beat me with a ruler because I went to bed instead of staying in his room. I remember Donna being mad at me for crying loudly enough to wake her up. Sherry told her I was crying because Dad woke me up to beat me.
Dad's head games were weird enough to an adult mind but wholly inexplicable to a young child. My sisters didn't understand it any more than I did. Dad used to tease us a lot. But his teasing face and his angry face were so similar that we never knew if the moment would end with a tickle or the belt.
When I was seven, Dad sold his dental practice and moved the family to Kansas City, Missouri. He had slipped a disc in his back on the night I was born and was in constant pain. He never fully healed from that injury. His back pain made it impossible for him to continue in private practice. That could have been part of the underlying fuel for his weird, unpredictable moments of rage.
I found out in my adult years that Dad didn't know he was adopted until he entered the military during World War II. His birth certificate revealed that he'd been born on December 3, 1921. His parents had always celebrated his birthday on his adoption day in April.
