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.
Mom can decorate the tree later.
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. . .”
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 possible my dad could not bear to be here without my mom. Or perhaps she could not bear to be, where ever she is, without him.
Dad went on Hospice crisis care Thursday afternoon and quietly departed this life at 3:23 a.m. Saturday with my sister at his side.
After surviving the Great Depression as a child; serving in the army in Germany for two years during the Korean War; fathering and raising five children to adulthood; caring for a disabled daughter for 51 years; providing employment for others through a small business for many years; remaining a loving and faithful spouse for 59 years; participating as a faithful follower of Christ his entire life; surviving prostate cancer for more than 10 years; and enduring the ravages of Alzheimer’s on his cognitive and physical abilities for over five years; Jerry A. Smith is finally at rest. He was an intelligent, responsible, hard-working, loyal, and loving son, brother, husband, father, and grandfather. May he rest in peace.
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.
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.
We all love bright blue-skied days full of joy, peace, contentment. But in life we have our gray days. Sometimes we even have very dark days where we can barely see past the next minute that faces us, let alone the next day, the next step. In recent weeks, even months, with my mom struggling to care for my dad with Alzheimer’s whose abilities have continued to decline, the gray days have grown ever darker.
Even with an increase in the hours of home health aide help, my mother’s strength and overall health continued to decline as she persisted in taking care of my father. She was in trouble, and we all knew it. The last week of November I ramped up my time at their house and spent 4 out of the 5 weekdays there trying to step in for her with Dad’s care. My sister relieved me on the weekend, but called me Sunday morning, December 2nd.
“Mom thinks she needs to go to the hospital,” Carol said.
“I’ll be there in a half an hour.” I was already dressed, found a pair of shoes and left immediately. Carol met me at the door and said, “She doesn’t want to go to the hospital today anymore.” Mom was lying on the sofa looking pale and lifeless. I sat down beside her legs and spoke softly to her, trying to convince her to go. I handed her the phone and asked her to call 911. I wanted her to do it. I didn’t want to force her into anything.
“They’re probably not going to keep you,” I said.
“But you don’t know everything,” Mom said.
I did know that Mom has suffered from stomach or digestive problems her entire adult life and has always been very careful about what she eats, avoiding foods that cause her problems. But she’d gotten to the point where the only foods she could really tolerate were toast, cream of wheat, cheerios, and a turkey sandwich. She was taking every over-the-counter remedy available, but had continued to refuse to see a doctor for three years.
“What don’t I know?”
“A couple of days ago I found a lump here in my abdomen around my belly button,” she said.
I took the phone out of her hands. “You can’t tell me that, Mom, and expect me not to take you to the hospital.” I called 911 because she wanted to go in an ambulance and not wait in the ER. She simply felt too bad.
I stayed home with Dad.
The first phone call from my sisters at the hospital with Mom were optimistic. Her blood work and another initial test were good. Her stomach problems were related to her nerves, we all thought.
In the second phone call my sister told me that Mom’s cat scan showed that she has cancer throughout her abdomen.
And my world went pitch black dark.
Mark packed a bag for me and brought it up. I temporarily moved in.
Mom came back home that evening because even though they wanted her to stay for testing, she wanted to come home. We found an oncologist and scheduled some outpatient testing. Meanwhile Dad started having problems and by Tuesday night we were so concerned about about his rapid and shallow breathing that we called 911 for him. He spent six nights in the hospital on IV antibiotics. We took turns staying with him or with Mom so that neither would be alone overnight.
On Monday afternooon when Dad was discharged from the hospital, he was moved to a local nursing and rehabilitation facility. I went with him bringing the basket my sister had packed at home of his labeled clothes and a few personal items from his “office,” a card table beside their living room window.
“When you leave here,” I began to tell Dad daily the last few days he was hospitalized, “you’re going to move to another place where you can do rehab.” I was very careful now to avoid the “home” word, like we were with Annie when she was in the hospital.
At first the move to the nursing home seemed okay, even fine. It was a little more home-like than the hospital. His roommate is also nonverbal and looked like he slept a lot. A nurse station was down the hall. I moved Dad’s clothes into his closet and drawers while the staff got the initial admission things done. They asked me if he wanted his dinner in his room or in the dining room. I had heard that it was good for residents to get out of their rooms and eat in a social environment so I said, “Let’s take him to the dining room.”
I wasn’t in the dining room two seconds before I realized my mistake.
The residents who need assistance eating are assigned tables at the far end of the room. These are not the people who are able to sit upright in a chair and have conversations. When Dad saw where he was, he started to cry. And so did I. I imagined he thought, “How did I get here?” I think he may even have been horrified to find himself in a place where so many people were so disabled.
But it was too late to turn back now.
I pushed him to his assigned table near a big window. A woman, P., was already there and waiting. She is a tiny little woman in a large well-padded chair with head supports on either side. She didn’t move a muscle except for the fingers of her hands which held a soft white stuffed kitten that she gently squeezed from time to time. She watched us, but said nothing. I smiled at her, but got no response.
H. arrived at the table next. He sat across from Dad. He was in a reclined geri chair, had sores all over his head, and his mouth was trembling constantly with some kind of palsy. He didn’t say anything.
I felt myself falling apart. Mark had met me there and was sitting on the other side of Dad. “I have to go to the restroom,” I managed to utter, and I got up and left the room. Behind the closed door I was able to pull myself back together, and returned to the table.
I sat down, looked over at H., smiled and said, “Hello, H.” And miracle of miracles, he spoke. Then he lifted his hand and waved to Dad. I wasn’t sure if Dad noticed, so I told Dad to wave at H., which he did. And H. waved back.
Just one small light in the midst of darkness.
A few minutes later A. arrived. She is a sweet little lady who does speak.
“My dad doesn’t speak,” I told the table at large, “but he likes to listen. He is very interested in fishing and in WWII.”
“I was in WWII,” A. said. “I was born in Holland.”
“Dad wasn’t in WWII, actually. He served in the Korean War in Baumholder, Germany,” I said.
“I was there!” A. piped up.
A. may or may not be a reliable source, I started to think. But I was happy to have someone at the table who was able to speak.
Then a whole beam of light walked into the room and up to the table. P.’s daughter, K., had arrived with bright spirits, stopping to say or word or smile at other residents along the way. She sat beside her mother and helped her drink her fluids. P. is on a liquid diet. K. explained that her mother has Alzheimer’s and has been at this particular facility for 3 months. She visits her nearly every day, but she doesn’t feel like she has to. In the nursing home P. was in the previous two years, K. felt like she had to be there daily. “This is a really good place,” K. said.
And my world got just a little bit brighter.