She was gurgling when we came, a horrible gurgling cough that I knew well from my premature babies, sick with yet another horrible cold—lungs filled with mucus they were unable to clear because they were too young to cough well, and their airways too narrow. My mother couldn’t clear her cough, either, because she had forgotten how to cough, forgotten that coughing would clear the airways, that it was important to spit or swallow the phlegm. Instead, she sputtered. It was distressing to see her like this, and we asked, like we always did, “Are you in pain?” For the first time in the eight years that she battled the disease, she nodded yes, yes.
It all moved quickly in slow motion from there. We had made the decision as a family to forgo hospital intervention to treat infections or provide fluids. No IV drips, no feeding tubes, no ventilators. As a terminal disease, that could postpone her life a few weeks, but not really improve the quality of those last weeks, and we knew she would never have wanted that. We took the doctor’s advice to start the morphine drip to keep her comfortable.
In hindsight, I didn’t really understand what that meant. I didn’t understand that when she closed her eyes to nap that afternoon, that she would never open them again. I didn’t understand that when she still did a slow tap-tap-tap on her head, it would be the last time she would move. Either I misunderstood the doctor, or I didn’t want to understand the doctor—I thought she would be comfortable, without pain, but still awake. I thought she would still be able to see us and hear us. And maybe she did know we were there, but from that point on, she was not conscious anymore.
We kept vigil for three days and nights, all three of us sleeping in her bedroom. The first night was awful–listening to her struggling to breathe and powerless to help her. The following morning, her temperature spiked and her heart rate rose to 140. That heart rate stayed high until the very end, but her temperature varied, from high fever to chilled cold hands. Her body was losing liquids, and so her heart had to pump faster to move the blood. “The body is fighting the infection,” said the doctor. “Maybe she will recover on her own.” False hope, but I can’t blame the doctor for not knowing what would happen.
By the second night, she seemed to be breathing better. We spent the day with her, talking to her, lying down next to her. We combed her hair, put on makeup. The nurses had decided not to change her anymore – the diaper was dry, it wasn’t necessary, and it was better not to disturb her. “Let her go gently,” the nurse said, “the less the living interfere, the easier it will be for her to separate and move on from life.” Surprisingly comforting words.
My mother’s mouth was open and slack, like when you fall asleep in an airplane, with your mouth hanging open. Morphine, apparently, makes all muscles relax, including the jaw–there was nothing to be done about it. I knew my mother would hate looking like that, so I put lipstick on her to make her look as pretty as possible. We used lemon infused Q-tips soaked in water to moisten her mouth, keeping her lips and breath as fresh as possible.
I look back at those three days and feel good about them. It was a special moment—all four of us together, listening to the soothing classical music station, listening to her breathing and reminiscing about my mother in her healthy days. We spent a lot of time discussing preparation for her funeral. It felt weird to do that in front of her, so we involved her in the conversation. Would she want this music, or that flower? We napped, we drank lots of tea and ate our meals in the room. The nurses were clearly used to this, and brought us our meals, and everyone gave us sad smiles as we walked the halls.
It was a special moment—all four of us together, listening to the soothing classical music station, listening to her breathing and reminiscing about my mother in her healthy days.
The doctor came in that Friday morning, and said it would probably be a matter of days. “Wait,” I said, “I thought she was fighting an infection, and might recover?” It is amazing how strongly we want to avoid the end. I just held onto the words of hope but prepared myself. When would she pass away? We didn’t dare leave the room, in case she took her last breath at that moment. It happens, the doctor said—the loved one goes to the bathroom and comes back, and the patient is gone. We were determined not to let my mother leave this world alone.
I asked how she was going to die. What would cause the heart to stop? After so many days of not eating and drinking, there was no fluid left to go through her kidneys. Her kidneys would stop working, and the toxins would build up. The lung infection would seep into the neighboring tissues, and there would be widespread infection and septicemia. Eventually the toxins would reach a level that would impact the brain, combined with the fact that there was less oxygen entering her bloodstream and more carbon dioxide building up. All of these would eventually stop her breathing and her heart would slow to a halt. I regretted asking for the details—I didn’t want to think of the slow poisoning that was going on in my mother’s body. I was just thankful for that morphine drip and how she seemed unaware of the dying process.
That afternoon at 4 p.m., my sister had to go pick up her husband from the train station. I lay down next to my mother and dozed off next to her for a while. An hour after my sister left, it dawned on me that my mother had stopped breathing. I listened and put my fingers on her pulse. Her heart was still beating strong and fast. And I realized, this was it, this was the moment … but my sister wasn’t there. “Quick,” I told my father, “come here and hold mom’s hand.” I messaged my sister. I begged my mother to please keep breathing and wait for my sister. It seemed like eons, but she did, she took another breath, and then one more, and I felt her pulse slowing, and then my sister rushed through the door, grabbed my mother’s hand, and my mother’s heart took its last beat.
My mother died at 5:05 p.m. on the fifth day of the fifth month of 2017. She died in the arms of her family, peacefully and in beauty.
Even though I researched what I could about how the disease would ultimately end, I was still surprised by what happened. I learned that it is a disease, one that kills; it isn’t old age that kills, it is the disease shriveling the brain and the important parts of the body that keep it functioning.
I learned that there is a silver lining to the disease. By the end, the patient is unaware of their condition, unaware that they will die from it. Not like a cancer patient, that is fully aware of the terminal nature of their disease until the end. An Alzheimer’s patient isn’t aware and that is a blessing.
I learned that I was lucky to have a long time to say my goodbyes and thank yous and I love yous to my mother.
I learned that we grieve for so long for the disappearing loved one—I have cried buckets of tears over the last few years—so that in the last few months, weeks and days, saying goodbye is not that painful. And that is the one good thing about Alzheimer’s, it makes saying goodbye at the end easier for the family and for the patient.
Jasja De Smedt Kotterman
Jasja is Dutch-Argentinian living in Hong Kong with her twin boys and Dutch husband. She grew up in South America, but considers Holland home. Her mother, Ada, left Holland when she was 21 to teach in Venezuela, met her Belgian husband there, and together with him continued living an international life. She did not return to Holland until Alzheimer’s took away all her languages except her mother tongue, Dutch. She lived the last two years of her life in a care home in Holland. Jasja would fly back and forth to Holland three to four times per year to spend time with her mother. Jasja’s sister lives in Amsterdam and would visit their mother on a weekly basis, and was the main point of contact for the care home. Ada’s husband remained living in Uruguay, but would spend months at a time in Holland to be with his wife during her last two years.