Caring for a Relative With Dementia While Ukraine Is Under Siege

By Myroslav Laiuk

Translated from Ukrainian by Svitlana Bregman

This story is part of a series of essays and articles written by Ukrainian artists who decided to stay inside Ukraine after Russia’s full-scale invasion of Ukraine on February 24, 2022. This series is produced in collaboration with the Folkowisko Association/Rozstaje.art, thanks to co-funding by the governments of the Czech Republic, Hungary, Poland, and Slovakia through a grant from the International Visegrad Fund. The mission of the fund is to advance ideas for sustainable regional cooperation in Central Europe. 

“Do you know what dementia is?” Olga, a Ukrainian woman who has been caring for her ill mother, begins a story. “This disease is completely irrational: everything you imagine about a person or about how the human brain works can simply be deleted.”

“Almost a decade of my mother’s disease has changed my worldview,” she says. “The psychiatrist said, ‘Hide the TV because the patient will destroy it.’ I said, ‘No, but why?’ After some time, though, my mum began to quarrel with her reflection in the mirror and she destroyed the TV in the house. At some point, I realized my mother’s long-term memory was disappearing, the present seemed to vanish, and she was gradually returning to her childhood. My mom kept saying she wanted to go home even though she was in the apartment where she had always lived. In her head, she was back in her youth, before Kyiv. As for me, her only daughter, I ⁠also fell out of her life — I had not been born yet. But she knew my name and kept calling for me, even though she couldn’t explain who I was.”

In the beginning, Olga’s mother understood her condition and asked for help. Her lack of control scared her: she could not read, write, or understand what time it was. She forgot words. She said she would jump off a bridge if she could.

“I ⁠think my mother was telling the truth, but she dared not do it,” Olga said in reference to her mother’s words. “Once, at Trinity, we stayed at a country cottage near Kyiv, and we failed to watch the door of the house. My mother went outside and exited the garden into the forest. Fortunately, she was barefoot. It took us some three hours to find her. The footprints on the sand helped us… Maybe she didn’t want us to find her in those woods.”

Olga keeps repeating that society should have more awareness about this disease.

“In the past, at Lublin University, I took several lectures on euthanasia and could not understand why there was so much fuss about it. As my mother’s illness progressed, I returned to the issue of euthanasia and reconsidered it in the context of dementia: a person should have the right to choose.”

When Olga was pregnant with her second child (her children are five and seven), she debated whether she should place her mother in an assisted living facility so that she could focus on her two young children.

As it turned out, Kyiv no longer had any such wards in psychiatric hospitals or nursing homes. No one wants dementia patients because they are incurable, and the disease keeps progressing. Their care is hard to manage. They found a ward for dementia patients in the suburbs with a long waiting list, but there were only seven nurses for 80 people. The psychiatrist said, “You can take her there, but she will only survive three months at the most. It’s your decision … If you want to ‘get rid of’ her,’ I can help you arrange it. But such patients feel better with the family.” That is why, two months before the birth of her grandson, Olga’s mother was taken to the Vinnytsia region in Ukraine to stay with a caregiver.

“She did not want to be touched by strangers when getting dressed or during hygiene routines. My mother, who has never used any obscene language in her life, would sometimes curse at our nanny in a harsh way. She pushed her away. She spat on her.”

In the Vinnytsia region, she fell down six months after she arrived and broke her hip. The doctors refused to perform surgery to fix it, either there or in Kyiv. This is a common practice. If dementia patients get injured, many doctors won’t treat them, meaning their bones fuse and the person becomes unable to walk. Doctors believe that such persons are not lucid and that they cannot be responsible for the intensive rehabilitative process required after surgery. In addition, there is a high risk of re-injury. A few days after the fall, in May 2018, Olga’s mother was transported to Kyiv. She realized that she was back home and was happy to see her grandchildren.

What to do?

Two or three days before the full-scale invasion in February 2022, a friend from Lublin wrote to Olga: “Get your stuff and come stay with us.” At work, her managers told her: “You are too panicky — no one will attack Kyiv!”

Olga recounted the night of the invasion: “That night, I did not sleep at all. I collected my belongings and documents. I had a gut feeling. After 4 a.m., I heard the first explosion. I turned on Putin’s speech and heard: ‘Dear Russians, we are starting …’ I woke up my husband and said, ‘It’s the war. Take the kids and go.’ He couldn’t understand what was going on. And then he said, ‘We have to stay together.’ And so we took duct tape and started sealing the windows to calm ourselves down. They are still taped over.”

The next day, the border was closed to all men. What were they to do? How could they wait in a traffic jam with an immobilized, sick mother? Every three or four hours, she needs to have her diaper changed and be fed. Bedsores can develop instantly and then can take weeks to heal. Where would they find accommodation suitable for a paralyzed uncooperative person who screams at those around her?

“When a day later, active shelling began in Kyiv, and the enemy was already close, we decided to go to our country cottage north of Kyiv, in the Vyshgorod district. My sister and her family also came along. They helped us carry my mother to the car and pick up some of our bags. When we were leaving, we saw a military vehicle and dead bodies.”

The conditions in the country cottage were more or less good. There was a cellar they converted into a bomb shelter. At night, the explosions never stopped:

“In one window on the second floor, we saw Grad missiles flying from Petrivtsi. In the other window, we saw the missiles on their way from Brovary. My son was terrified of those shellings. He would wrap himself in a blanket, hiding in it like a cocoon. And my daughter began to bite her nails. During the day, we walked around the village and saw white traces of rockets in the sky.”

Olga’s mother came from a religious family; she attended church and respected the Reverand Volodymyr from the village where their country cottage was located. When in May she got worse and came down with pulmonary edema — a buildup of fluid in the lungs — Olga invited a priest to do a final anointing. This is the only rite that can be done for people in that condition: communion and confession are no longer possible since a person cannot adequately respond and answer questions. The priest reads seven prayers, anoints them with oil seven times, and reads the Lord’s Prayer.

“It’s all buried really deep in us”

“Her garden was always perfect,” Olga recalls. “A  lot of flowers. We made different jams and preserves. When I⁠ was a child, we would often go to Central⁠ Department Store, to Passage Mall, and to the central food store. We stood in queues. Then, we walked around the city center; we stopped by a cafe to have some Prague cake with tea or coffee. This was shopping during the Soviet Union era …”

Olga’s mother died on August 2, 2022, on Saint Ilya Day — the birthday of Olga’s late father. In eight days, she would have been 73.

“It’s very symbolic. I was expecting it. In recent years, August has always been difficult for my mother. My father would have been 75 on that day. My children and I visited his grave. At home, I poured my mom a little glass of wine, and I gave her her favorite coffee-flavored ice cream. Then we went to see off a relative, we stayed outside to exchange some small talk, and when we came back inside — that was it.”

They buried her in the village where the country cottage is located. The cemetery is some two kilometers away. The unsealed coffin was placed in an open car. Olga held her mother’s hand.

“It was a clear day, and Mom’s little lean body was warm from the sun. While we slowly drove to the cemetery, I held her warm hand. There it was. My mom was saying goodbye to me.”

Over the years, Olga has not used any anti-anxiety medication, but this episode pushed her to the brink.

“After 40 days, I broke down. I started getting symptoms I⁠ had never had before. My body released the many years of stress, on top of the war. I’m taking some mild anti-anxiety medication. It’s getting better. It’s all buried really deep in us. And we’ll have to deal with it for a long time to come.”

The number one cause of suicide is untreated depression. Depression is treatable and suicide is preventable. You can get help from confidential support lines for the suicidal and those in emotional crisis. Visit Befrienders.org to find a suicide prevention helpline in your country.

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This post was previously published on globalvoices.org under a Creative Commons License.

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