I wrote and published Where Memories Meet with the goals to educate and commiserate. I wanted to give readers who had little to no experience with Alzheimer’s a clear understanding of what was involved, as least to the extend that my family experienced it, and I wanted to reach out to those who were currently, or had been, dealing with a loved one with Alzheimer’s and let them know they were not alone. I understood.
A few weeks ago I received my first negative critique of Where Memories Meet. (The good reviews I rush to post, the negative ones, not so much.) As a writer it can be demoralizing and utterly discouraging when you receive negative feedback. It took me about a week to lick my wounds and resurface from the cave I had crawled into.
I requested feedback from a Writer’s Digest contest I had entered the book in, and the critique came as an email with the subject line, “You asked for it.” Which I’m sure was their standard response, but which particularly drove the point, and it was a sharp one, home.
The reader clearly didn’t like the book, and after reading the comments, I suspected he or she hadn’t read very far into it. The critique quoted a particularly benign sentence from page 13 and I seriously question whether the reviewer read any further than that.
The reviewer informed me that when one was writing about life and death matters, it was important to bring the character to life. I agree. In fact that was one of my most important goals and guiding principles as I wrote Where Memories Meet. I aimed to transform my father for the reader. And I took the risk of moving my story line backwards in steps through the seasons to do so, even though some readers found that difficult. I wanted the reader to see that the silent, largely non-responsive human life was a bright, multi-faceted, productive, and devoted father and husband before the disease took him away piece-by-piece. Or maybe I should say, “inch-by-inch.” Had the reviewer finished the book, I believe he or she would have seen that.
He or she also chose to compare my nonfiction memoir and oral narrative to the fictional Still Alice. I read Still Alice. I liked Still Alice. I was not writing Still Alice. I was not writing fiction. I read a lot of nonfiction, and today authors are doing an increasingly better job at making nonfiction compelling reading. I acknowledge that I might have been better at doing this.
What hurt the most was the reviewer’s comment that I told the story “inch-by-inch.” In my cave, licking my wounds, I chewed on that one for a good long while.
When I resurfaced, I responded to the Writer’s Digest contest. I was particularly disappointed because I had always viewed WD as a help and encouragement to writers, in particular to self-published writers. I didn’t find anything about the feedback I received to be helpful—only mean-spirited, discouraging, and demoralizing. I told them the review made me feel like I should apologize for asking the reviewer to read my book. I said that I made a mistake in entering it in the contest, and that was a mistake I would not be making again.
The positive outcome from this painful episode is that the reviewer unwittingly nailed it on the head, gave me a new insight into my family’s experience, and inspired me to write the post at my author website, Inch by Inch, about helping someone with Alzheimer’s.
I’ve entered the marketing stage of self-publishing project, although I really don’t like to use the word marketing. The whole point is that I have to somehow, in this noisy, crazy, over-stimulating, cyberworld, let readers, who might be interested in my book about Alzheimer’s, know that it exists. It’s not all that easy to get a book on someone’s radar screen.
That said, I want to thank Beth Ann Chiles at It’s Just Life, for posting about Where Memories Meet today. I met Beth Ann early in my blogging experience in 2011 and she has been a friend ever since. She writes an assortment of interesting posts on a frequent basis. I always enjoy her Teapot Tuesday where she shares a teapot from her extensive collection. She has been doing this for a while. I have no idea how or where she keeps all these beautiful items. But what I think makes Beth most special, is that every month she picks a worthy cause to feature in her Comments for a Cause. At the end of the month, she donates money to the cause based on how many comments she received throughout the month. It’s a double-win for the cause: money and exposure. Well done, Beth Ann.
Now, it would be great if you could go visit It’s Just Life and read all the wonderful things Beth Ann said about Where Memories Meet. The results of a short interview with me are posted there as well. Here’s a sample question:
1. What is your favorite thing about sharing such personal stories about your family? Or maybe a better question is what was your motivation? For the answer to this and other questions visit It’s Just Life.
I broke one of my cardinal rules today and played Christmas music before Thanksgiving. But I needed the music because I was going to decorate a Christmas tree. My mom’s little Christmas tree to be exact. The little tree traveled with us to Mom’s assisted living apartment, and then later I packed it up and moved it home with me where it has remained boxed up in the basement until today. I look forward to the year I can put it up without tears again. This post is copied from my one last year about Mom’s Christmas tree.
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.
My thoughts in the mornings aren’t very random anymore. In fact they are down-right predictable. My parents, either my mother, my father, or both, are on my mind when I first wake up, lying in my bed each morning. That’s one of the reasons I’m having trouble getting a blog up consistently. I don’t want to burden my readers with it.
But today I want to try to close a chapter for you about my dad’s life and death and Alzheimer’s.
Earlier on when the reality that Dad had Alzheimer’s started to sink in, I wondered how he would actually die. Does Alzheimer’s itself actually kill you? If so, how? Would the damage in his brain ultimately stop his heart from beating?
So I researched the end stages of Alzheimer’s online and read about all the things that could happen, and did eventually happen, to my dad. Often, it seemed to me that Alzheimer’s patients basically starved to death or died from dehydration, being unable to eat or drink. This did not sound like a good way to go, or process to watch. I dreaded the final days and weeks.
I don’t like to think back on the last weeks of Mom and Dad’s life together in their home with the series of desperate days trying to get Dad out of bed, trying to feed him, watching Mom in an exhausted state trying to catheterize him three times a day in his bed. (The catheters had become necessary years ago following radiation treatment for prostate cancer.)
During the last week of November I retrieved Annie’s Hoyer lift from the garage where it had been covered and stored since shortly after Annie’s death. I scheduled a lift repairman to come and check it out for us to make sure it was working and then I moved it to my parents’ bedroom beside Dad’s hospital bed. By now their bedroom closely resembled a nursing home room with the equipment and supplies we had collected there.
I planned to teach each of Dad’s home health aides how to use the lift. I was going to write clear instructions and post them on the wall.
That Sunday we found out about Mom’s cancer and I took over taking care of Dad for her the next few days during which I had a nurse come and give Dad an indwelling or Foley catheter that would only have to be changed monthly. By Monday Dad started with symptoms of diarrhea and vomiting. By Tuesday evening I noticed his breaths were shallow and rapid. I suspected at minimum that he was dehydrated from the flu-like symptoms. In consultation with my sister who had stopped over, we decided to call 911.
The paramedics came, put Dad on a gurney, rolled him out, and he never returned home.
In the ER we found out he had a full-blown urinary tract infection and was sepsis. I watched the monitor as his blood pressure dropped. They put Dad on a strong IV antibiotic and admitted him to the hospital where he stayed for six days.
In some ways the decision to move Dad to a nursing home was made for us. It would have been craziness to move him back home with Mom having discovered she had cancer. Around-the-clock help at home is really not affordable. It didn’t seem feasible that one of us would be able to stay there every single night indefinitely. And there was no way we were going to leave Mom alone with Dad now that we knew how vitally important her rest would be to her. The medical professionals and support services at the hospital just assumed he was going to a nursing home.
Meanwhile, we were battling Mom’s high blood pressure which we became aware of while she was in the ER finding out about her cancer on Sunday. In retrospect, it was likely the cancer that was causing the blood pressure problem, but at the time we thought it was the stress and anxiety.
We were monitoring Mom’s blood pressure at home and making regular calls to her family doctor giving them updates and receiving medication changes. Mom’s BP was frequently higher than 200/something, and we were not able to get it lowered significantly.
While Dad was still in the hospital the doctor refused to allow us to continue the over-the-phone consultations and demanded to see Mom before making any further medicine adjustments. I left the hospital where I was visiting Dad, picked up Mom and took her to her doctor’s office. While we were there I asked for his opinion about the plan we were formulating to find a nursing home for Dad with an assisted-living facility on campus. He said, “Bringing Jerry home is non-negotiable. He has to go somewhere.” And then he offered the name of the facility that his family had used and where we ended up moving each of them before Christmas.
It was really out of our hands.
Shortly after Dad arrived at the nursing facility I met with his new visiting doctor there. He wanted to know how aggressively we wanted to treat Dad. I told him Dad had a living will, and was pretty miserable being stuck in his largely nonfunctional body, from my perspective. I didn’t think heroic life-saving measures were appropriate. But I also told him about Mom’s situation. I really didn’t want Mom to have to suffer Dad’s death while she was dealing with her own cancer. “I think we need to keep Dad alive if we can. For now,” I said. He suggested we get Hospice involved. I was concerned that we’d lose the option of giving Dad antibiotics if Hospice was involved and I was afraid of more UTI problems because of the Foley catheter. I was under the impression that once you are under Hospice care it shifts from curative to comfort. And I had read that some people suggest in the end stages of Alzheimer’s that antibiotics are not given to cure infection and prolong life.
I wasn’t ready to lose Dad under these conditions if we could keep him here a little bit longer. I feel bad sometimes for making him endure more when perhaps he could have left sooner. I believe if we wouldn’t have called 911 when we did, he would not have survived that initial infection. We prolonged his life by calling 911. These are difficult decisions to make. I knew in my mind, heart and every ounce of my being that Dad did not want to be here anymore. His life was misery. And if there were moments when he was completely aware of his surroundings and his condition, as I have read there can be, I don’t know how he bore it all.
Anyway, Dad survived the Foley catheter, the infection, the move to the nursing home, and Mom dying. He made it through getting dressed up, transported to, and enduring Mom’s funeral mass. He made it to his 80th birthday that we celebrated the Friday afternoon after my siblings and I made the trip to Piqua and laid Mom to rest in the cemetery in the morning.
The Thursday after Mom’s funeral, and after Dad’s 80th birthday, I got a call from his nurse. “Your dad had an ‘event’ this morning,” she said. His loyal and compassionate home health care aide was with him at the time. The nurse explained,”He slumped over in his chair and turned gray. We got him back into his bed. I need to know if you want us to do blood work to try to figure out if he has suffered a cardiac or neurological event. Does he have DNR?”
I told her he had a living will and a DNR and that I would be there as soon as I could. I called my siblings and told them what was going on. “I don’t think we want to do any interventions,” I said. My siblings all agreed. I was getting a clear message in my mind as if someone was speaking to me, “Let him go,” it insisted.
So they brought in Hospice Comfort Care. We gathered at his bedside and performed our 24-7 death watch for the second time that month. Dad was conscious when we all arrived and turned his gaze to each of us one at a time. He was jerking his right arm periodically. We interpreted that as a sign of pain, but later one of the Hospice nurses suggested it could be a spasm or seizure.
It’s difficult to know how much to medicate someone who is nonverbal. We had been through that before with Annie.
I stayed with Dad Thursday night, sitting by his side in a recliner, dozing on and off, but holding onto his hand.
We all gathered together in Dad’s room during the day on Friday. I don’t remember when last he was conscious.
My sister stayed with him Friday night. I knew when I said “Good-bye” to him, before going home to sleep, that I might not see him alive again. It was the third time I had been on a death watch with Hospice Crisis Care. I knew the signs.
The phone call woke me up at about 3:00 a.m. “Dad’s dying,” my sister said. “I don’t think he will be alive by the time you get here.” We got in the car and arrived shortly after he breathed his last at 3:23 a.m. with my sister by his side.
The truth of the matter is that I really don’t know what Dad actually died from. I don’t know whether it was the cancer he had been treated for years ago that damaged his urinary tract making catheters necessary with their associated infections. I don’t know if it was dehydration from his inability to eat or drink much of anything. I don’t know if he had an infection, or if he suffered a “neurological or cardiac event.” Or maybe it was a broken heart that ultimately killed him.
I do know that for the last five years he suffered from Alzheimer’s in every sense of the word.
We all did.
And I’m grateful that the suffering has come to an end.
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. . .”
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:
I allow myself to cry. I cry for what used to be. I cry for what was. And I cry for what will never now be.
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.