1. Being with Dad, even though he can’t walk, can’t talk, and may not always know who I am, is now a comfort instead of a grief.
2. We do what we have to do and priorities get clear in a crisis.
3. Moving Dad to a nursing home was not as terrible as I had expected and always dreaded.
4. Everything is relative.
5. I have an unlimited and unstoppable capacity to hope, like my mother.
6. No matter how much we may want someone to live, death will not wait.
7. Grief comes in unannounced and overwhelming waves.
8. Grief has a taste and odor and prickly needles and fills up your senses, and creates nausea, and is so much more than mere sadness.
9. Words of comfort are, in fact, comforting.
10. You can watch your mother expel her last breath, touch her cold hands in a funeral parlor, and sit beside her closed coffin at her grave, and have none of it seem real.
On Thursday night I heard my mother stir and I rose from my bed on the floor in the corner of her room and hurried to her side.
“What’s wrong?” she asked as she roused from the deep sleep she had been in all day.
“Nothing’s wrong, Mom.”
“Someone’s crying,” she said.
In my mom’s 78 years on this planet, I imagine she heard and answered a lot of someones crying. In the 1950s through the 1970s she was raising five children who had been born within six years, including my sister Annie who was extremely disabled. I suspect there were a lot of times someone was crying.
Even as we grew older we were sometimes crying: me coming home from college carrying a basket of laundry when a relationship ended; a long-distance phone call to speak of a loved one who died; a conversation about one thing or the other around the kitchen table. I know I did my fair share of crying on her shoulder. In fact after we were shocked by the revelation of her cancer in early December, I’d wake in the morning crying, and I’d think ‘I need to tell Mom about this terrible thing that is happening.’ Then I’d wake fully and realize that the terrible thing was happening to Mom.
Although I have only a few memories of my father crying before his illness, the Alzheimer’s had the unfortunate effect of causing him to become very tearful. For quite some time, every morning Mom would have to face his tears as she rose to get him up and out of bed because Dad started most days crying.
So, yes, there have been a lot of someones crying. And Mom wiped, or talked, away many, many tears.
The nurse practitioner at Hospice where Mom spent nearly two weeks in the last month said, “Your mother is a caregiver. Often caregivers have a hard time letting go. They need to know everyone is going to be okay.”
I told my siblings and we all reassured Mom in our own way that we, and Dad, were going to be all right. I don’t know if that gave her peace in the end, or if this fight was simply too big for the fighter.
On Thursday when Mom said, “Someone’s crying,” even though my heart was breaking, I answered, “No, Mom. No one’s crying. We’re all okay. Everybody is going to be okay.”
On Saturday morning, January 12th, at 11:45, my sister, husband, and I watched my mother take her last breath, six short weeks after her pancreatic cancer was discovered. I am grateful that we, along with Hospice of Dayton, were able to give her the loving care she not only deserved, but earned each and every day of her life.
She had a joyful spirit and a compassionate soul. I will miss her dearly.
If I were an artist, or had any artistic ability whatsoever, I would paint the scene outside the window beside me where I sit with my feet elevated in a recliner beside Mom’s bed. She has just now fallen asleep so I will have to save her lunch for her when it arrives in the next few minutes, although I know she won’t eat more than a bite or two of this or that.
This room at Hospice of Dayton is comfortable and the service superb. Mom has been here under their care since Thursday afternoon when she left the hospital to transition through here before going back home to her new little assisted living apartment. “I just hope I feel good enough to be able to enjoy it here,” Mom said of her new apartment after we moved her in but before all the original artwork from family members was hung, framed pictures still setting on the floor in stacks leaning against the walls.
I do too, Mom. I do too.
Christmas evening my little celebration planned for her and Dad got derailed when the nurse taking care of Mom said, “I’m so glad you’re here. Her blood pressure is too high and we may need to send her out tonight.”
Mark and three of our kids went over to the nursing care unit to visit Dad, while I waited with Mom to determine the success of the latest attempt to lower her blood pressure to something considerably lower than the 247 it was currently at. The nurse, under the guidance of the nurse practitioner, had been working on this for over two hours. My siblings and I had been fighting Mom’s skyrocketing blood pressure ever since she found out about the cancer throughout her abdomen on December 2nd. Her blood pressure could have been high longer than that from the stress of taking care of Dad at home and helplessly watching his decline. We don’t know because Mom was unwilling to leave Dad and go to the doctor for her own medical concerns which included increasingly painful digestive problems.
“We think she should go out to the hospital,” her nurse said.
Mom didn’t want to go.
“I think we should follow the medical advice we’re getting,” I told her. “That’s what you want me to do for Dad, don’t you?” I need to make these kinds of decisions now that I am the health care power of attorney for both Mom and Dad.
“I don’t want to leave your dad,” she said.
Dad is a little walk away, through a door and down a long breezeway. And even though Mom’s not felt good enough since she’s been there to see him more than once, I made a promise I hoped I could keep, “You’ll be able to see him when we get back.”
So we went to the hospital on Christmas night. Hospice came there on Thursday. And we moved Mom to the Hospice care site for 5-7 days to try to get her pain and symptoms controlled and develop a care plan she will be successful with when she goes back home.
I have at least found a temporary place of rest here. I spent Thursday night in her room on the chair that converts to a bed. I lied, on the relatively hard surface, awake watching the tiny dots of green light float across the ceiling and down the walls from the projector on the shelf above Mom’s bed. It looked like a million stars in the night.
And now I sit and look out her window at the snow scene beyond. A lamplight stretches up beside a sycamore tree. They mark the edge of a pond. The limbs of the trees in the woods beyond the water are decorated with white. A bright red cardinal landed on the evergreen beside her window for a moment. It’s quite lovely really.
If I were an artist I would paint it.
She’s been so strong through all of this: fifty-one years of caring for my severely disabled sister followed by her death, three and a half years of caring for my father through moderate and then late stage Alzheimer’s, a sudden revelation that she has advanced, considered incurable, metastasized cancer, and my father’s hospitalization followed by his move to a nursing home.
Sometimes my mother’s strength is my undoing.
Yesterday, the day the world was to end, the first day of winter with a snow storm blowing through the area, we moved Mom out of her home of 32-plus years of family memories and into a small assisted-living apartment under the same roof as my father.
As soon as we got Dad settled in his new home earlier this month, my siblings and I turned our efforts to packing Mom up and readying her to move as well. It wasn’t until the day before the move when my husband, sister, and her family, were on their way to Mom’s new home, in their cars filled with packed boxes of fragile items and original artwork from talented family members, that Mom put up any complaint. She sat on the sofa across the room from me, her shoulders hunched, the wall behind her bare in spots from removed artwork, and said, “I don’t want to go.”
“Transitions are hard,” I reminded her. “I know this must be so hard on you. And I feel very bad that you have to go through all of this change and confusion now when you are feeling so bad.”
“I don’t like anything about this,” she said.
“Do you think we’ve made bad decisions?” I asked her, knowing that after my mother’s virtual collapse at the beginning of the month she has done little more than move from the sofa to the bed and has not been able to participate very much in the the planning of this monumental transition. “Should we have done something different?” I asked her.
“Well, I would have waited until I had my doctor’s appointment and knew my test results,” she said, referring to the ultra-sound and biopsy that were done last week as an outpatient since she refused to stay at the hospital for the testing when we first took her to the ER and the cat scan revealed her cancer.
Through this whole nightmare I’ve been living, there have been a few funny moments, and there have been some all-time low moments. This was a bad moment for me.
“We thought you wanted to be where Dad was,” I said, remembering that was her only criteria for what nursing home we selected for Dad. She wanted to be in the same building and not have to travel there by car or golf cart. “Dad had to go somewhere. Dr. R. recommended this place. We were lucky they had appropriate rooms for both of you. They weren’t going to hold an empty apartment for you forever. We were afraid of losing it.”
Yesterday morning I woke up at 5:00 a.m., early again as I had done the previous two consecutive nights that I spent at my parents’ house. I slipped into Annie’s room down the hall where my mom was sleeping in her queen-sized bed we moved there when Dad started sleeping in his hospital bed and Mom in a twin bed beside him in their own room. I could see she was awake, even in the dim light that shone under the door from the bathroom. I sat down on the glider beside the bed and we talked for a while.
The five hours before we were scheduled to leave at 10:00 passed by relatively uneventfully, helping her dress, sewing patches on her blanket and afghan to label them for her, taping and labeling last-minute boxes.
Just before 10:00, I helped Mom put her coat on, walked her out through the garage and into my waiting and, courtesy of my husband, warmed up car. As I backed out of the driveway I saw her looking at the house and I struggled not to think about the fact that this might be the last time she saw her home. Little snow flakes were drifting around although the ground had only gotten a dusting and the streets were relatively clear. My bare hands were cold on the steering wheel. I looked at Mom’s face. She was calm and without tears.
“This reminds me of the story Dad told me about the day his family moved to Miami Street,” I said as I turned out of the drive, onto the road and away from the house. “He said it snowed the day they moved.”
“Oh yes,” Mom said as she laughed, “I remember that well. I got stuck at work downtown at Murphey’s Department Store.”
“Did you have to spend the night there?”
“No. Your dad came and got me,” she said as I stopped at a red light.
“It had snowed so hard my dad couldn’t get his car away from the curb to come and get me, so your father walked there from Miami Street to get me. I spent the night at his new house on a mattress with his two sisters. The three of us slept sideways across the mattress.”
“Was it a queen-sized mattress?” I asked as I turned onto the main road that led to the nursing and assisted-living facility.
“I think it was probably a double. When they saw how bad the weather was going to be they decided to get the mattresses moved over there first. All they had been able to move were the mattresses and an ironing board. Your grandmother had brought the ironing board over because they were putting up wallpaper. My parents were sick with worry about me spending the night at your father’s house.
“In the morning, your grandmother cooked eggs for breakfast. They must have either moved the stove as well, or maybe it was there when they bought the house. This was the first house they ever owned. They always rented before. Anyway, she served the breakfast on the ironing board. There weren’t any chairs to sit on.
“Then your dad walked me home from Miami to Manier. It was so cold, my eye-lashes froze. The snow was deep and I think I borrowed a pair of boots from one of his sisters. We walked down the middle of the street. No cars were out.
“Your dad and I used to talk about that from time to time,” she said, as we turned into the parking lot of her new home, accompanied by Angels We Have Heard on High playing on the car stereo.
I’m sitting here at my computer desk at 5:00 am because my nerves have woken me up again and it feels impossible to lie in bed. Although my goal is to post three days a week, it’s been nearly a week since my last post. My email inbox has 147 messages in it — I like to keep it under 50. Many of the messages are unread links to my blogging friends’ posts. I am so far behind in reading the blogs I follow, the news from the online friends I’ve cultivated nearly two years now, that I know I will never be able to catch up and will have to resort to jumping ahead to try to get back in the sync of things.
I don’t like to complain about how busy I am, or how far behind I get. We’re all busy. But for those of you who notice I’ve not been around, I just wanted to tell you I hope to be back to reading and commenting soon.
I spent most of the day at my parents’ yesterday. Holidays are so hard for people who are suffering in some way. I woke up thinking that I needed to hang the strand of blinking red bell lights along Mom’s living room mantle. My sister Annie loved watching the red blinking lights, and because of that my mother loved them too. Or because Mom loved them, Annie did. We never were quite sure which way that actually went. We hung the bells up the first two Christmases after Annie was gone, but I think it was too much trouble for Mom to do last year.
Armed with blank Christmas cards and a package of peppermints, I left for my parents house mid-morning. Life has been so hard for Mom over the past months, years really, that she is worn out and doesn’t want to do one thing extra. I suspected if I asked her if she wanted me to get out her Christmas decorations she would say “No.” So I didn’t ask. I went for the bells.
I went down the hall and into Annie’s room where Mom keeps the Christmas decorations in the large closet.
While I was looking for the bells, I found a wreath. I took it out and hung it on the front door.
“I usually put the wreath my sister gave me on the front door,” Mom said from her chair near the far corner of the living room where she sat and ate her toast and drank her tea. “It’s on the glass porch.” I moved the wreath I’d hung to the back door and went out on the porch for the wreath my aunt had made.
I decided we needed Christmas music so I sorted through their collection of vinyl albums for the Christmas ones and selected one I remembered from my youth, the album cover completely torn through on one side.
“I don’t want to get the tree out today,” Mom said as I worked.
In one box I found a Santa and Mrs. Claus that a good friend of hers had made years ago. I set them together on top of the china cabinet.
Back and forth to Annie’s room I went bringing out decorations one or two at a time.
I put the snowman and woman on the window sill beside the card table, Dad’s “office,” where he sits and “works” or plays ball with a family member or a home health aide.
I found a centerpiece for Mom’s coffee table, four miniature nutcrackers for the kitchen window sill, and a snow globe that I think Dad might enjoy.
At the bottom of a big box, in a bag, I found the red bells that Annie loved.
I hung them along the mantle, securing them with tape. Then I cleared the nick nacks off the mantle and set out the manger scene that used to be my grandmother’s.
Christmas carols playing in the background, I stood still for a minute and looked around the room. Mom used to put a small tree on a table in front of the picture window in the living room, but Dad sits there now and the table is full of pencils, blocks of wood, books, cups of coins, and other things we use to try to entertain or occupy him.
“You know, you could put the little tree on that table beside you, Mom,” I said. “It wouldn’t have to be in front of the window.”
“I could put it on that table,” Mom said and pointed across the room to the end table beside the lift recliner that we got for Dad, but that he rarely sits in anymore. It is simply too hard to get him in it, and he slides out of position if he sits there too long.
I shifted the recliner away from the sofa and moved the small table between the two so that it would be closer to the electrical outlet. Then I got the little white tree from a box on the shelf in Annie’s closet, and I set it up on the table.
“I don’t want to do the ornaments today,” Mom said.
I went back into Annie’s old bedroom and found a crocheted tree skirt.
“My sister made that for me, too” Mom said.
I arranged the skirt around the bottom and plugged the tree in. It’s tiny colored lights added a warm glow to the room.
Annie’s blinking bells strung along the mantle lent a cheerful twinkle to the room.
I left the ornaments in the three small boxes on the bed in Annie’s room.
Mom can decorate the tree later.
My grandmother died 28 years ago on November 1st, All Saints Day, which we thought was kind of appropriate as she was a faithful soul who helped to clean and take care of the church a half a block away from her home.
Below is a short excerpt from the story I am working on about my father. This selection is told from my father’s perspective, in his voice.
A Hard Life
(1930s – 1940s)
My mother had a pretty hard life. It’s very sad when I think about it and how little appreciation I had for that.
She got home from work probably about 4:00 or 4:30 in the afternoon. She made dinner out of whatever she could scrounge up. I was a bad boy. I raised Cain about what we had for meals and I have regretted that many, many, many times over the years. I’m a mashed potatoes and gravy kind of a guy. I wanted a full meal with meat, potatoes, and vegetables. If we didn’t have that, it wasn’t a meal in my way of thinking. My parents had two limitations: one, their financial ability to provide it and two, before the end of the war, whether they had rationing capabilities to provide it.
My mother had a number of family events that she always enjoyed, but my dad was a wet blanket on every one. He never missed one that he didn’t make at least somebody miserable, in particular my mother. He didn’t want to go.
When my mother wanted to go somewhere she’d get us all ready to go and then he would refuse to go. Most of the time we went anyway. Because we didn’t have any transportation, the Wirrigs would come and pick us up, generally Paul. Paul always represented to me the person I would like to be.
My dad never watched the kids. Mom would always be mad at him. With just cause. I can’t ever remember my father ever doing something that was really a help to her.
My mom didn’t like the fact that my dad was an alcoholic. And she couldn’t do much about that. She’d do what women generally try to do—threaten—but that don’t stop them.
[. . .]
My mother never had time to play.
She told me she was going to teach me how to cook enough that I could be self-sufficient when I got older. She taught me how to bake a cake from scratch. It was almost a sin to think about making a cake out of a box.
I also watched her fry chicken and saw what she did, but there was nothing formal about learning that.
I was supposed to keep the weeds out of her garden. I never did.
After the war, the factory where she worked went back to making underwear. Those ladies really worked hard sewing their stuff. I worked there my junior and part of my senior year cleaning the place at night. Those women leaned on those sewing machines just flinging the fabric through there. They got paid by how many they did. So they worked hard. They had to. That’s why I say my mother had a pretty hard life.
Songs really have a way of transporting me to a different time and place.
Pandora is one of my best discoveries on the web. I love defining my own radio stations. If you’ve not done it, you should give it a try. I just heard “Don’t sleep in the subway Darling,” on my Petula Clark station.
Now it’s playing one of my old favorites – Ferry Cross the Mersey by Gerry and the Pacemakers. I just love this station.
In the time it took me to look up the links, Ferry Cross the Mersey ended and now they’re playing another goldie, God Alone Knows by the Beach Boys.
Earlier today I heard Build me up Buttercup by the Foundations and was instantly transported back to the talent show my 7th grade year of grade school. I wasn’t performing in the show, but my sister Carol was. She and a friend had worked out a baton routine to this song. My sister had never really done baton before other than to just play around, but her friend knew what she was doing, and she taught Carol.
Carol practiced and practiced and practiced, forever engraving the song into my mind. I knew every step of the routine by heart from watching her practice.
They had little costumes made up and everything. And I think it could have been a knock-out performance.
But Carol didn’t have as much confidence as perhaps she required. She told me before the show, “I hope I catch the first toss. If I catch the first toss, I’ll be fine.”
I sat in the front row of the balcony as Carol and her friend came on stage with their batons and the music started. I held my breath when Carol tossed the baton into the air. Then my shoulders slumped when her spinning baton fell with a thud and a bounce to the floor. Oh no.
I don’t think Carol caught even one of the subsequent gazillion tosses during that song that never ended. And I cringed from the cheap seats every time. The rest of the audience responded as you might expect teenagers of the junior high variety to respond. It was mortifying for me as a mere spectator to my sister’s disastrous performance. My heart bled for her.
But she stayed out there on the stage and kept doing the routine, tossing the baton into the air and dropping it. I suppose she had options. She could have left the stage in the middle of the routine in tears. But she saved the tears for later and saw it through.
Here’s to you, Sis, for an amazing performance of perseverance.
And thank goodness we’re not in junior high anymore.