Aging with dementia, through a granddaughter’s eyes

Dying With Dignity Canada board member Leigh Naturkach describes how a visit to her 92-year-old Opa led her to reflect on her relationships and her wishes for care at end of life.

I held in my hands one of the picture frames that contained the black and white photos of my Oma and Opa, taken probably 50 years ago, when they were close to my age. Proud German profiles, tasteful fitted clothes, the slightest dignified smiles on their faces. I gazed at their image, wondering what they were thinking in that photo, about their stage of life, of all the things that they didn’t yet know would happen in their lives. I dusted them off and packed them into a half-filled cardboard box. I was packing for an upcoming move to a new and bigger apartment with my soon-to-be husband Danann. As I looked at, dusted, and packed each picture, I thought about the day I had just spent at a long-term care facility, where my Opa now lives — 92 years old, with advancing dementia.

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We had gone to the long-term care residence in Oshawa, Ont. as a family. This was my second time visiting him there since he was moved from Northern Ontario. I had taken a deep breath as we pulled into the parking spot. After we got inside, we went through the regular protocols, then took the elevator up to the security level floor, and walked past the line of residents sitting in wheelchairs and on benches.

As we knocked on his door, I realized I could hear my Opa’s shower running. He opened the door and made a joke by closing it on us as though we weren’t welcome. He was fully dressed and the shower was still running. He had forgotten to turn it off. But thankfully, he remembers most of us and still has his humour. Like my other grandfather who had Alzheimer’s, his disposition changes depending on the day, deepening different aspects of his personality.

We introduced him several times over the next 10 minutes to my fiancé, whom he has met before. Opa wed at 22 and was married to my Oma for 69 years. As we stood around his room, he told me that I was too young to get married, even though I am nearly 40.

That reminded me: No matter how old you are, you are always a child to an older someone. When the time comes when that older someone becomes childlike again, it squeezes at your heart. It’s a balance between simplifying things while maintaining the respect and dignity he deserves. But there are days and moments when he is what and how I remember. The gradual losses are hard to bear, but there are still things to hold on to, and at this point, there is still a new relationship with him for us all to continue to discover.

We took him to sit in the residence’s now familiar visitor room. His room, though clean and comfortable, is a long way from his bungalow home 1,800 kilometres away. We sat in the brown floral couches across from each other. My Opa asked my mother, “How’s your mother doing?” The three-second pause that followed as we waited for her response felt like a lifetime, with each of us observing the look on her face. He doesn’t remember that he found my Oma dead four months ago in their bed, 1,800 kilometres away, and that her death is why he is here in this strange place. I watched my mom struggle to not rehash painful memories in order to provide him comfort. “She’s in a good place,” she said. Opa nodded, not knowing what she meant.

I watched my dad watch my mom. As he’s gotten older he seems to have become more protective, more aware of her. Or, maybe I’m just more observant now. My dad does an admirable job of adding levity to any situation, with his caring ease. Today, it brought a lump to my throat. Grateful for his presence, I inexpertly tried to contribute to the banter, a few tears slowly streaming down my face while I smiled. I haven’t managed the brave face quite yet. I am studying illness, death, and dying, yet no amount of education or preparation can help me shortcut the emotion that surfaces when it comes to my own family.

My mom asked Opa about his leg — it isn’t healing from an ulcer. My mom, ever the registered nurse, took off Opa’s shoes and socks, and went to work, dressing his wound. There wasn’t much for me to do, so I just held Opa’s hand as Mom pulled the compression socks over his legs. Opa winced but put up with the pain because Mom told him it was for the best. He held but didn’t squeeze my hand. His descent into dementia has definitely had its ups and downs, with emotional ranges and behaviours that were new to our family. But with me, he has maintained a consistent softness that I can’t quite explain. Since Oma has died, his resilience has been pretty amazing. We see a new, playful, social side, and a continued razor sharp sense of humour.

My mom worked away at the wound, while my dad supported her by holding up Opa’s leg like some sort of nursing sous chef. Danann and I admired their teamwork in this situation and I felt a deep appreciation for the years of intimacy that helped get them there.

“Only here and now”

As Opa continued to wince, I kissed his hand because that was all I could think to do. Thoughts about pride, masculinity and privacy ran through my mind, all elements he’s maybe dealing with silently, or maybe not at all. How would I feel in this situation? Would I know? Maybe it won’t be the case tomorrow, but today I don’t think he remembers the birthday cards, Easter baskets, German cookies, Christmas Eves. I don’t think he remembers when he took me to his workshop filled with cars, and parts of cars, and things that made a lot of noise. My conversational references to what I think are simple shared knowns are no longer guaranteed familiar territory. There is only here and now.

Leigh and her Opa, about 10 years ago.

My mom got Opa’s leg fixed up as we talked with him about the weather, how he’s sleeping, and what’s new in our lives. Sometimes, he’s happy to just listen. As our time with him came to an end, we slowly walked him to the lunch room so he wouldn’t miss his 12 o’clock sitting. The residents were already lining up. We gathered around him for hugs. He kissed me goodbye. He’s a big fan of kissing everyone on the mouth these days — something else he never did before.

His eyes look different now, less clear. He still sees me and knows me, but I do not know if he will the next time I come. The uncertainty and lack of a clear linear trajectory of this disease makes it difficult to anticipate what to expect each day in mood, recognition, and physical state. My mom’s family is German, and we tend to operate in terms of order, logic, and clear pathways. Dementia feels like multiple intersections of uncertainty, being forced to be in the moment, to simply react to what is directly at hand. There are good and not-so-good surprises along these intersections. Ambiguity has taken on a bigger role in our family, and we are doing our best to adjust.

I wondered how he would feel observing himself now. Our family is carrying out the wishes that my grandparents indicated in their living wills. Despite the fact they were as prepared as can be, the reality and rollout of these kinds of diseases can render us powerless in their wake. I am grateful my family has had these conversations, and that we are respecting those directives. This situation reinforces the importance of these conversations; however, for me, it also reinforces the importance of advocating for the option of advance requests for individuals who are seeking medical assistance in dying but are at risk of losing capacity.

We left Opa standing in line, as we walked over to the elevator and waited. The short distance between us in that hallway felt farther than it actually was. I felt a pressure on my heart seeing him standing there, alone again, even though nothing was technically wrong. I don’t have children, but I imagined it might feel the same way when a parent leaves their vulnerable child at school for the first time, or with a new sitter. We waved to Opa as the elevator door dinged open, and we stepped inside.

Downstairs, as we signed out of the building, I positioned myself behind a wall post to compose myself. I didn’t want my parents to see me upset — I just needed a minute. Danann held my hand. I thought about how, hopefully, we will one day be my parents’ age, facing life together, and then one day, my Oma and Opa’s age, together. I thought about the unknown journey ahead for us, with the end in mind.

In a few weeks, we will be living together, debating about furniture and who will make dinner, deciding on pets, sharing career and creative goals, and planning our wedding. No matter what we choose, we don’t know what the future will choose for us. Fast forward to the end: will mine be a sudden passing like my Oma? Or a lengthy illness, with ups, downs and a hundred tiny heartbreaks, like my Opa?

While most of us truly cannot prepare for, or know when or how our time will come, all I know is that I feel a sense of relief in knowing that I’ve already made plans (to the extent that any of us can) for my ending. I have a will, power of attorney, advance healthcare directive, and finances and funeral arrangements in place (I’m happy to share that chicken fingers are on the menu and Leonard Cohen is on the playlist). While maybe not romantic, these are the ultimate “’til death us part” demonstrations I can give to my future husband and my loved ones: my wishes, and peace of mind.

It is thanks to getting involved with Dying With Dignity Canada six years ago, studying, and having many conversations about death, that I can focus on and deepen the life and joy I have in front of me. My support of Dying With Dignity Canada also assures me that I’m defending end-of-life rights, including those of people with dementia.

I closed up the box with the last of the photos, sealing it with tape, packing up for this next life adventure. It is with love, communication, and planning that we can be prepared as best we can, wherever the path takes us.

Leigh Naturkach is a Dying With Dignity Canada board member and the Director, Advancement for Women’s College Hospital Foundation.