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A crunchy, sweet, but tangy apple is what I crave. Something bittersweet. Bittersweet is a word I’ve always loved for its fascinating connotations. But now the word seems to swallow me, as I would swallow the apple I crave. For I am at the bedside of my dying mother. 

Mom has always been quite healthy, with a strong beating heart. In her youth, it was something she disliked hearing from doctors; it pissed her off for some reason. I never asked her about it because it seemed to upset her so much. Maybe she thought the doctors should find other ways to tell her how robust she was. Maybe she didn’t like the foreshadowing of it; knowing she would live such a long life. Maybe she felt guilty that her heart was so strong when her sister, Dorothy, had died so young. “She has a strong heart,” the doctors would tell her parents. And she’d be put off by the telling. 

The last ten years of my mother’s life didn’t really belong to the Mom I’d grown up with. Not to the Mom I knew who loved to dance and who retired at 68 either. Not the grandmother who took her grandsons to every water park in Southern California and to Disneyland every summer.

In her 70s and into her 80s she walked five miles around the lake near her home every day except Sunday. She got up at 5AM to exercise first too. Then the brisk walk with her friends around Lake Murray at 6AM. Sometimes afterward they went to breakfast. I always marveled at how fit she was. She square danced and round danced at least three nights a week for years and whenever she could she enjoyed ballroom dancing. I have sweet memories of seeing her graceful moves on the dance floor. She had a body that was envied.

It was gradual, her decline. Normal aging I guess you could say. But it wasn’t until the last ten years that it became more and more difficult. And not just difficult for her, but for those who loved her and knew her when she zoomed about and danced on her own two legs. When the wheel chair became her life she quit wanting to leave the house. Too much trouble. Too much pain to get from the wheelchair into the car. She did enjoy having her brunch outside on the patio overlooking the golf course. She did love sitting in her massage chair. And even though she only weighed 100 pounds, she had a good appetite and cleaned her plate. She loved cookies and chocolate too. Her mind began to fail, but not completely, but as she moved on into her mid to late 90s, she became more and more demented. 

 

In her last years I found myself missing the mother and woman she used to be. I longed to have her back; the one who baked cookies and whose filter was still firmly in place. The one who taught me to respect all people no matter their color, size, and shape. The one who was so easy to laugh with, who loved to read, and was kind to strangers and who had compassion for her husband. The mother who showed me by example how to be a strong, yet tender woman. The one who could cry when she was vulnerable or when something sad happened. Something sad like her husband dying. When my step father died, she was unable to cry, and it almost seemed like she didn’t understand. Did she really get it? She went to his funeral. She insisted on dressing up, and I helped her fix her hair, and she sat in the front row of the chapel. Some of us spoke of him that day. And she listened, but she could not cry. At the cemetery when they gave her the flag all folded so perfectly, she was solemn. But did she know he was gone? Did she get the significance?

In the next few years she would ask about her husband. “Is Stevie coming home? When is Stevie coming home?” I never felt like lying to her, but I didn’t want to make her sad by telling her he was never coming home. Usually, I just looked at her and hesitated long enough. “He’s dead isn’t he?” she’d say. 

“Yes, Mom. But we loved him so much and we remember what a great man he was, don’t we? He was such a good grandpa for the boys, wasn’t he?” It was then I would remind her of the good times we shared with him. It made me feel better to talk about my memories, but I never could tell if it gave her anything. What was going on in her mind?

Dementia is cruel. It takes away one’s quality of life, interrupting memory and cognitive abilities. Sometimes I would lose patience with Mom. She’d ask the same questions over and over. Sometimes within minutes, the same question, the same answer. She began to make repetitive humming sounds that drove us somewhat crazy. At one point in her decline she sang a certain song over and over.

Bill Grogan’s goat,

was feeling fine.

Ate three red shirts,

from off the line.

Bill took a stick,

gave him a whack,

And tied him to,

the railroad track.

The whistle blew,

the train grew nigh;

Bill Grogan’s goat,

was doomed to die.

He gave three moans,

of awful pain,

Coughed up the shirts,

and flagged that train.

It’s funny the first time, but when we’d push her in her wheel chair around the neighborhood in order to get her some fresh air and different scenery, she’d sing that part of the song over and over. “Enough with the goat, Mom,” I’d tell her and try to get her to sing something else. Anything else. “She’ll be coming around the mountain when she comes!” 

 

But soon she was back singing Bill Grogan’s Goat. Arghhh. But one day she stopped singing it. Just stopped. The repetitive humming increased though. I read about this compulsive or recurring behavior in people with Alzheimer’s and other types of dementia symptoms. According to some experts, this may be a simple form of communication for them or a behavior “covering up” their failing vocabulary. It can try a person’s patience. Trying to redirect her might stop her, but it didn’t work for long. Sometimes it’s not the big things about caring for your loved one, it’s the little things that make you weary. 

Our son and his wife lived with Mom for over ten years, making it possible for her to stay at home. They did all the shopping, cooking, and attended to all the details for her so she could be in her comfortable cocoon of home. We hired a company to provide care-giving and they did two shifts a day, which included massaging her legs twice a day too. But our “kids” made it all possible. They endured everything with efficiency and grace, and kept Mom as happy as she could be. It’s a big reason they adopted a dog–to be Mom’s companion. The gift of their love and devotion is priceless. We are the fortunate ones.

However, in the end it was necessary to move Mom to a bed and care facility. She fell and broke her hip, requiring surgery. The woman who normally came to be with Mom had a day off, and the replacement worker did not follow the protocol to leave Mom in her hospital bed with the rails up when her shift was over. Instead, she left her in the massage chair in the living room, and moved the wheel chair out of her way. Too far out of her way. Struggling to get into her wheelchair, Mom fell. We saw the whole thing on video from the interior cameras my brother had installed years ago. 

Our son got home from work five minutes after she fell according to the video recording. He took all the right actions and got her an ambulance. He called me immediately and I was on a plane the next day. 

Because of Mom’s strong heart and overall health, she came through the surgery like a champ. The doctor explained to me that almost one out of 10 people over the age of 50 will die within a month of surgery for a broken hip. In Mom’s case, they were not going to try to rehab her, because of her advanced age (102) and being wheel chair bound pre surgery. 

While in the hospital I signed forms to require the medical staff to provide only “comfort care.” Even though this was within the parameters of her health directive, it was difficult for me. I called my brother, and he said, “You are the one who is there. You make the decisions and I will be fine with whatever you decide.” Okay, and I think that with love I will do the best I can.

Now because she needed 24/7 care, I had to make other important decisions. Was hospice necessary? Where does she go to live now? How much does it cost? How will she react? My brother and I both talked about how taking her out of her home would be the beginning of the end, though my son reminded me that Mom always talked about wanting to go home. 

At this point in her life she wasn’t clear about where she was some of the time. And as it turned out, even though she came home after surgery, she gave no outward indication of distress when the ambulance came to transport her to her new “home.” They transferred her to the bed and care place I had secured for her. It was only a two minute walk from her house to this new residence where the caregivers provided all she would need. They would do everything for her—adjust her position every two to three hours so as to avoid bed sores, be mindful of post surgical hip precautions, change her diapers, keep her clean and fed. These were things we family members had been doing round the clock. My husband came for a week and helped with all those things. Our oldest son and his wife came too, and everyone pitched in. It wasn’t easy, it wasn’t pretty, but we did it without hesitation.

In the bed and care residence she had her own private room. It was one of six private rooms in an old house that had a living room, dining area, and kitchen where they prepared everyone’s meals. She would get the needed 24/7 supervision. 

 Because of our naiveté at the time, we didn’t understand that she would never get out of bed again. At the time we hoped for more recovery. We filled her little room with her chest of drawers and her TV and photos of family. We brought her books and her CDs and her CD player and one of her small music boxes that played, “Somewhere my Love,”  from Dr. Zhivago. She loved music and it was easy to provide her with that familiar comfort. 

My daughter-in-law always decorated for holidays for Mom, and it was February 1st, close to Valentine’s Day, so we took those decorations over to her room as well. I put up a pretty scarf of Mom’s on the closet doors so she could see something besides a big beige closet door from her bed, and I put the quilt my brother had made for her on her bed. It was as good as it could be. 

I went home after 24 days, but feeling as if I had deserted her. The guilt was palpable. My son reassured me. My husband did too. In my head I understood my guilt was unnecessary, but my heart was breaking. It was the toughest thing I’ve ever done. But in reality, the toughest thing was yet to come. 

I went back to be with her for her 103rd birthday on March 16, 2019. I planned to get her closet cleaned out and her clothes and knickknacks donated to Good Will while I was there for three days. It was a let-down when we went to see her on her birthday. She was barely aware when we brought her a few gifts and blackberry pie with one lighted candle, and sang Happy Birthday. We did get a little smile out of her though.

 

The next day, Sunday, she seemed better, more alert, recognizing us. Talking a little. She smiled for me when I snapped her photo with my phone. She hugged her little teddy bear and seemed almost happy.

But on Monday the 18th of March around 10:00AM I got an urgent call from the caregiver. “Come right now.” My adrenaline kicked in making my heart race. When I got there I could see the difference. She was obviously in the first stages of dying. The nurse was there and she talked with me about the signs, what to expect. It could be hours, days, or weeks, but it would be soon. I cancelled my flight home. 

That very day, everyone in the family was able to say good-bye, either in person or on the phone. All six of her grandchildren and two of her great grandchildren spoke of their love for her. She couldn’t talk at all, but I could see in her face, her eyes, that she heard us. Each one of the grandchildren spoke of their love. My husband, my brother, all of us were able to tell her how much we appreciated her, loved her. What a blessing.

Staying with Mom as she went through all the stages of dying was as I said, bittersweet. Our hospice team’s goal of keeping her comfortable, clean, and pain free gave us the freedom to minister to her in more personal ways.

Mom was no longer able to swallow, so eating and drinking was out of the question. Even as she progressed through the predictable journey to death, it was precious to be holding her hand, giving her reassurance and “permission” to go. 

My daughter-in-law, the pup, and I were there when the hospice team Chaplin came (with our permission) to give her a blessing and say a prayer. He sang “Amazing Grace” in English and in Cherokee (he’s part Cherokee). He told her, “When God calls you, you can go.”

They say that hearing is the last thing to go. So I read to her, sang to her, and told her how she had been such a good mother, grandmother, sister, and daughter. I shared examples of mothering when my brother and I were growing up and how she had been so dedicated to us, giving us dancing and music lessons, teaching us important things about life, taking us to museums, plays, to our activities, and providing for our happy lives together. For the most part she was a single mother who worked and arranged an idyllic childhood for my brother and me. She was a strong and beautiful, smart woman.

And so it was that starting the 18th, when hospice began sending nurses and LVNs and care-givers to do 8 hour shifts, we knew the end was near. They stayed with her, changing her diapers, checking her vitals, giving her medicine to help dissolve the secretions (which seems a nice word for mucous that was causing her to choke). The nurse kept me informed of all the signs and what they meant, so I would not be surprised, I suppose, when the inevitable happened. If I wasn’t in her room, they called me on the phone with updates. Hospice was beyond wonderful.

On the day she died I sat with her for eight hours. In a way it may have seemed desperate, even macabre. But it was important to me to see that she wasn’t alone. Holding her hand I sang “The Lord’s Prayer” and “I Can’t Help Falling in Love with You” along with Andrea Bocelli on the CD compilation I had made for her.

You can hear him sing these here:

https://www.youtube.com/watch?v=SPizIaBPhSg

https://www.youtube.com/watch?v=aEplqV0scyo

I read to her a section “On death” from one of her favorite books, The Prophet by Kahlil Gibran. It wasn’t surprising that she had underlined the last stanza:

                          For what is it to die but to stand naked

                                 in the wind and to melt into the sun?

                                 And what is it to cease breathing, but to

                                 free the breath from its restless tides,

                                 that it may rise and expand and seek                           

                                 God unencumbered?

                                 Only when you drink from the river of silence

                                 shall you indeed sing.

                                 And when you have reached the mountain top,

                                 then you shall begin to climb.

                                 And when the earth shall claim your limbs,

                                 then shall you truly dance.

Soon the secretions were too much for the medicine to handle and she had to be suctioned with aid of a simple machine. All of this was for Mom’s comfort, but it worked to comfort me as well. I hated listening to the telltale rattle of her labored breathing that is caused when a dying person is no longer be able to swallow, cough, or otherwise clear saliva and mucus from the back of the throat. 

If we saw a grimace, she was given more morphine. She could have it every two hours or as needed. The way you knew if she needed it was her body language and her grimace. Most of the time every two to four hours seemed sufficient. I was uncomfortable with how her body was twitching. The nurse assured me that Mom was not in pain from it, and I didn’t see any indication that it bothered her, but it unnerved me. The twitching stopped after the first day, but the secretions increased rapidly. When the nurse pulled up Mom’s eyelids she pointed out how glassy they looked. This, and dilated pupils, signal death is near. Her eyes were somewhat open, and tearing occasionally too. 

At 4:00 in the afternoon I couldn’t hold my vigil any longer. I needed a break. Some food possibly, but at least some kind of break. I went back to the house. Both my son and daughter-in-law were there. They talked with me a bit about their grandma and about half hour later they decided to take their dog over to see her. The dog had been a big part of Mom’s life and she loved her dearly. It went both ways. I went back with them. We only stayed a short time. 

Around 6:30PM I decided to hurry to Costco to pick up my prescription. They closed at 7:00 so I was in a hurry. I would just make it. But I got a phone call a few blocks from the house. I pulled over to park by the lake where Mom used to walk every day. It was the nurse. Mom was gone. I called my daughter-in-law’s number and told her Mom died, and asked them to meet me there. I got there first, they were right behind me. 

I was crying so hard, and all I could think about was holding her. The hospice nurse and the woman from the bed and care were in the room. I knelt down by the bed and told them, “I want to hold her.” I picked her up slightly and held her in my arms. The mother I loved all my life wasn’t in that body I was holding. That was obvious to me. I don’t remember if I said anything, but I felt, more than heard, her body’s last gurgle. Her color was fading quickly as I gently laid  her back down. The only thing I felt for certain in those moments was my own selfish pain. Her wish, her prayer that God take her, was answered at last. She lived for 103 years, but it didn’t matter to me that it was such a long time. It was just too unbearable to think of her being gone. 

The next thing I remember is my son encouraging me to go outside and look up into the sky. “It’s beautiful out there.” His wife was at Mom’s bedside. The day before she had brought a vase of red roses from the garden. Now she was placing the rose petals all over Mom’s bedclothes, arranging and rearranging them. Their sweet dog jumped up onto the bed and was lying next to Mom, just as she had done for so many years. This made me gasp for breath it was so sweet. My son was taking it all in from the foot of the bed. It was a beautiful scene, but heart-wrenching to witness their good-byes.  

I went outside and looked to the sky. There were so many clouds; some dark and foreboding, others with the last light of day pouring through. It was beautiful, just like my wise son had said, but it couldn’t stop my tears, even as I realized how my sweet mama would now be able to truly dance again.

 

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