I had a couple of heart burdens to take care of yesterday.
I made what might be the last trip to my parents’ house to accomplish the last few things I needed to do, mostly picking of the last stragglers I plan to keep or return to relatives. Even though the interior of the house looks completely different than when my parents were living there (much furniture and most small items are gone, the walls are all painted, and there is new carpet throughout, all the original artwork from relatives and photographs are off the walls) Mom and Dad’s presence hits me like a punch to my gut when I’m there. And all the memories we made over 33 years fill each room. It’s hard to be there.
It will be hard never being there again.
Fortunately Mark was there with me. He followed me around in silence.
The second heart burden was a trip to the cemetery where I haven’t been since the day of Dad’s funeral with it’s gun salute from the Korean War Veterans. The cemetery is a little over an hour’s drive from home. We planned to make the trip to check on the gravesites and make sure no dead and dried up flower bouquets were still hanging around. We also planned to plant grass.
Although I had dreaded making this trip, the cemetery visit was actually much easier than I had imagined it might be. I don’t feel Mom and Dad’s presence there at all. I have a couple of memories of taking them there to visit Annie’s grave, but their presence does not linger there.
The graves were clean and neat and looked like fresh top soil had recently been applied. Mark walked around on them to test how compacted they were and decided they were not ready for grass seed yet. They still have some settling to do.
The gravestone is shaded in this photo, but you might be able to see that it has not yet been engraved with the death dates. We didn’t know if that was something that was prearranged or if we needed to call someone to do it. We decided to stop by the cemetery office on our way out to find out if and when they planned on seeding the grass, and what we needed to do about the gravestone.
The short answers are that they take care of the grass and will continue to add soil to the graves as it settles over what usually takes about six months. Then they will plant the grass. We need to contact the gravestone provider who will contract an engraver to come out and take care of the stone.
But here’s the bright light in this otherwise rather dull and somewhat gray post. I inquired about little WWII and Korean War marker flags I had seen at grave sites. The man at the office was very friendly and told me the cemetery provided those and they would put one at Dad’s grave since I’d asked. He then proceeded to ask me for the identifying information. I had already explained that both Mom and Dad had died in January.
“Where is this grave exactly?” he asked me. I told him it was near the back corner of the cemetery. It was beside another Smith gravestone of my aunt and uncle’s, and it was a plot with three graves on it. I explained about Annie.
“Now I know which one it is,” he said. “Some of the people who were hanging around after the funeral were talking about your mother. They said she took care of her daughter for a long time.”
“Yes,” I said, “she took care of her for 51 years.”
“She must have been a real gift,” he said. “I couldn’t do that.”
And before I knew it, the words were out of my mouth, “Sure you could,” I said. And then I caught myself and added, “That’s what she would have said. That’s what she always told people who told her that they couldn’t do it.”
“Yes, you could,” Mom always insisted. “Yes you could.”
I woke up to a fascinating, no, more than fascinating, soul-stirring, comment on one of my blog posts. Although I had planned to do another post about our recent trip to New Orleans, in keeping with my intention when I started this blog of writing about what was on my mind when I woke up, I am sharing this story with you.
When I arose this morning, I checked my iPhone for email and found this blog comment to moderate by a new reader, Roseanne, who wrote, “. . .I was just lying here looking for sleep, when my Mother came into my thoughts. I got up and put into the computer ‘My Mom had a very hard life ‘ and found your blog. I’m going to put it in my favorites and follow you. I have never done anything like this before. . .”
I retraced her steps and found the post I had written about my Dad and his mother.
But Roseanne’s words struck a cord with me, because even though I had never written about it, my mom had a hard life, as most of my loyal followers might imagine.
When she was young my mother often had to care for her two younger siblings because her mother suffered from heart disease and was quite ill a lot of the time. Then my father was sent to Germany in the army and Mom had their first child, my oldest sister, while he was thousands of miles away. A few years (and children) later, Annie was born with severe brain damage and Mom, along with Dad, took care of her every day for 51 years. Annie died shortly after Dad was diagnosed with Alzheimer’s. Mom went directly from caring for her daughter to caring for her husband. She never got a break. Not one. That’s one of the hardest things I’m dealing with now in the throes of my grief.
So the fact that Roseanne found me by searching for those terms had me take notice. Thank you, Roseanne.
But Roseanne wasn’t the first person who found me recently. A few days ago I got a couple of comments from a person named Kathy and her brother Kenneth on my “Remembering Grandma” post that I had written about my mom’s mother. They recognized the Adams’ name and the house that my grandmother grew up in.
It turns out that they are distant relatives. Their grandfather Adams was my great-grandfather’s brother. They have remained in the same basic location that my, and their, Adams’ family set down roots when they came to Ohio from New York sometime in the 1820s. We are talking about meeting each other in the near future. It is an exciting find for an amateur genealogist like myself, and even more stirring for my heart that has found new family, albeit extended, after experiencing the painful sense of loss of family following the deaths of my parents. I only wish I could tell my mom. She would have been thrilled to know. Thank you, Kathy and Kenny.
My new “cousin” Kathy wrote me and said, “I just have to say that I think my Grandma Adams up in heaven was pushing for us to meet. There were so many events leading up to me finding your blog and things that occurred afterwards that led me to believe it was not ‘just a coincidence.’”
I wrote her back and said that I believed my grandmother, in cahoots with my mother, may have had something to do with it too. Isn’t it a nice idea to think about loved ones plotting and scheming in Heaven, trying to find a way to break through the veil of life that separates us?
Now, I realize some of you will agree with me whole-heartedly, and some of you will think this is a bunch of bunky and I should devote my active imagination to more production purposes like writing a novel, perhaps. And I’ll be honest and say that I have been all over the map in what I believe about after life.
I can say, though, that when you lose someone you love dearly, it can make you want to believe. And belief, after all, is a choice we make. Belief, according to dictionary.com is, by definition, “confidence in the truth or existence of something not immediately susceptible to rigorous proof.” If there was proof, you wouldn’t need to believe. You would simply know. It is something we can choose to do.
My mom believed in the power of prayer. And in the thinning of the veil from this life to the next. As she was near the end of her days in a bed at Hospice I told her, “I’m going to miss talking to you, Mom. I’m going to have to find another way to talk to you.” And she replied, “Yes. You will.”
So I’ll repeat the question I asked in my very first blog post, that I read again today while I was looking for what I actually said about the purpose of my blog:
“Mom are you out there?”
Images play havoc with my mind. The smile on my mom’s face when she returned from the ER with the revelation that her abdomen was full of cancer. The way my dad looked sitting in his Gerry chair all dressed up in a suit and scarf for my mom’s funeral. Mom reaching out to cup my face between her hands, as I leaned over her bed at Hospice, responding “I love you too,” and then, “Don’t cry.” Dad waving good-bye to me from the foyer on the last day I visited before the “event” that ended with his death. Mom in the good days. Mom in the bad days. Dad crying. Dad laughing.
The images of mom and dad fight for my attention. I allow them to pass through my mind’s eye. Some insist on lingering a while. Some persist in returning. I will never forget.
It’s been a little more than three months since Mom’s cat scan thrust us all into darkness. A little less than three months since we moved Dad to the nursing home. A little less than two months since Mom breathed her last. A little more than one month since we buried Dad. The 2nd, the 4th, the 10th, the 21st, the 25th, the 12th, the 18th, the 26th, the 1st. Milestone dates marching in rapid succession.
I allow myself to cry.
It seems fruitless to do otherwise.
It’s March. Halleluia.
I’ve been through some dark days in December when we found out Mom had cancer throughout her abdomen. Then we found out it was advanced, incurable pancreatic cancer that had metastacized. Then her oncologist told us she had maybe 4 to 12 months to live if we provided nothing but comfort care. In retrospect, that amount of time would have been a joyous gift.
The second day after we found Mom’s cancer was a very dark day when Dad started having breathing problems and we called the ambulance to take him to the hospital. As I watched his monitored blood pressure drop and listened to doctors talk about a massive infection and sepsis, I prayed Dad could hold on a little longer. Mom needed him now.
When I pushed my dad in his wheelchair into the dining hall at his new home in the nursing care facility a week later and he started to cry when he looked around and saw the company he was in, it was a very dark day indeed.
But there were darker, pitch-black days to come. I am still not able to write about it and the vivid memories that continue to plague me at unannounced times during the days.
In fact, I have difficulty writing about anything at all right now and getting my brain and my fingers on the keyboard to cooperate. Yesterday’s “After Mardi Gras” post took me much longer than it should have to write. But I feel more comfortable talking about non-emotional things right now, and that’s where I think I should focus my efforts.
Someday maybe I’ll share the days I’ve spent at Mom and Dad’s house, emptying drawers of memorabilia, sorting, judging, saving or throwing away their life’s small scraps of treasures. But not today.
Today it is March, even though it is still dark outside at this early hour, and even though there are snow flurries in the foreast and a high temperature prediction of only 37 degrees. I know there will be days of spring this month.
Last year my post on this date, Welcome March, oh month who brings sweet spring, received the honor of being freshly pressed. This year I am barely slogging through. This month I have a birthday to get through without the annual arrival of flowers from my mother. So many things to get through that lie ahead.
But today is March. And March gives me hope.
I’m sitting here in my study this morning and life resembles what used to be normal, causing my mind to drift. I check the clock on the wall and wonder if it is too early to call Mom. And then I remember.
The phone rings and I remember exactly how my mother sounded on the other end when she’d call.
Deeply ingrained things.
I turn my thoughts to my dad, alone in his room at the nursing home. Our home health aide Larry will be there in about an hour. So far we’ve kept a daily home health aide with Dad for three hours over lunchtime. Initially we did it as a transition and because we were so occupied with caring for Mom that we weren’t able to be with Dad as much as we would have liked.
I have a lot more time now, but much less direction.
We don’t know how much Dad understands about what has transpired over the last seven weeks or so. When we moved Dad from the hospital to the nursing home I told him he was going there for a while. I called it re-hab. And he did receive some speech therapy for a while. I told him Mom was moving there too, in a different room, but in the same building.
I showed him the hallway to get to Mom’s room before she moved in.
I brought Mom to see him after she was living there. She stood up on her own, kissed him and said, “I’m living here now. I’ll be able to see you more often.”
We brought Dad to Hospice for a visit while Mom was there. My sister and I helped her stand up and lean over to kiss him. I have no idea what he thought.
We brought Dad to Mom’s apartment twice after she returned from Hospice. The first time she was conscious, but too weak to stand up and kiss him even with my sister’s and my help. The second time she was not conscious. Both times Dad seemed uncomfortable and would not look at her.
The day Mom died, we all walked over to tell Dad. He cried hard when I told him she was gone and that she was with Annie now. I believe he understood. I don’t know if he remembers.
We took him to the funeral and he sat with dignity beside her coffin.
I would like to be able to give him comfort, but the advice we’ve received is to not bring it up. It could be like learning it anew every time we mention it.
So we put pictures in his room. And I hung a windsock beside his window. And we go on together.
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.
Life is uncertain. Or as my dad used to say, “There are no guarantees.”
As we enter into a new year, I know that I can’t predict the miseries, mysteries, and magic that will enter into my life this year.
So we march forward, armed to meet our challenges as best we can, yet with our eyes and ears open to the many miracles that surround us and make our journey not only bearable, but make life worth living.
I wish you all many magical moments, and the awareness to fully appreciate them.
Happy New Year.
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 am reminded this morning of a book I read by Arundati Roy called The God of Small Things. It is set in India and is concerned about the sad and dangerous things that go on in the main characters’ family lives, set in a country where sad and dangerous things are happening on a much larger scale. So the main character prays to the God of Small Things.
The recent tragedy in Newtown has helped me keep my own tragedy in perspective. Although my parents are clearly suffering both physically and emotionally, there is some small comfort in knowing that they have lived full and relatively long lives. The children of Newtown have not.
We carry on and continue to march forward.
Dad is settled in his room at the nursing home. The room is semi-private and quite small which makes it difficult for his care. He is using a geri chair that takes up more space than a wheel chair, and they have to pull a Hoyer lift into the room to get him up or put him back in bed. It is quite a cramped ballet of movement when that occurs. We hope to get him moved to a larger room when one becomes available. His medical condition is a little complex because of the side effects from his prostate cancer radiation treatment years ago that have required him to be catheterized three times a day since. First he managed it on his own for a decade, then Mom took over. Recently we’ve tried the Foley cath but that probably led to the UTI and landed him in the hospital on Tuesday of our crisis week. Since we’ve had a variety of opinions recently from doctors in the hospital to the doctor at the nursing home, the Foley cath has been in, out, and now back in. It continues to be a big medical issue for him and may require a minor surgery for a surgically inserted cath. The Foley cath appears to cause him pain based on facial expression and body movements.
Dad’s swallowing ability has been evaluated at the hospital and re-evaluated at the nursing home. It continues to be a source of concern. He is on pureed foods only and nectar-thick liquids. Initially we had to give him his drinks by spoon, but a straw has been approved if it is well-monitored so that he only gets a sip at a time. We have to wait quite a while between bites of foods and sips of drinks. His swallowing reflex is very slow. The aides at the nursing home feed him most of his meals, but we’ve kept our morning home health aides working with him for a transition period. I try to visit at meal times to be able to feed him occasionally.
Mom finally got enough strength up to visit Dad on Thursday. She hadn’t seen him since he went to the hospital on the previous Tuesday night. We were in the middle of a Christmas party entertainment at the nursing home when Mom arrived with my sibling. Dad was crying every time a new song started, so it didn’t really feel all that much like a celebration to me. He did seem to listen attentively to the jokes and trivia questions from the entertainers. Mom wasn’t sure Dad recognized her at first. He did not respond as I imagined he might. He remained fairly neutral. I have no idea what he’s thinking.
Dad is trying harder than ever to speak. Yesterday I asked him to whisper because sometimes he was able to do that when he couldn’t actually talk out loud. I leaned in close over his bed, next to his head, and felt his warm breath blowing the wisps of hair from my forehead with his efforts to expel words. The speech therapist who is working with him on swallowing, thinks he may be able to use a communication board. Today I am working on getting photos to her of family members, foods, drinks, and other things he likes for her to make the communication board with. I am afraid to hope.
Meanwhile, my siblings are getting my mom ready to move. They are sorting through things as she chooses what she wants to take with her. Yesterday the dining room table held a stack of sheets and a few mementos. I took three family photos off the wall to hang in Dad’s room in addition to what we’ve already put up there.
The little Christmas tree and the Christmas bells still decorate the living room. One day soon I will have to return and take them back down without Mom sitting in the chair in the corner. At least I won’t have to look at the empty chair. It is going with her.