Mom looking out the airplane window on our trip home.

Reminiscence: a journey home to Finland with my dementia-diagnosed mother

I have been writing this story in my head for years, and many times I have hesitated to write it down. I hesitate firstly because I have very limited medical knowledge about dementia and secondly because I’ve worried about what other family members may think of me sharing. However, after much thought, I’ve decided this is a story I need to tell. I have been open on social media that my mother suffers from dementia. I have tried to focus on humour and love in what I share, as I think it is important to put a positive lens on life. More recently, however, I took my mother home on a trip to Finland. The journey was difficult, and I learned some deeper lessons about this disease. I also had to come to terms with my own abilities and assumptions about my mother’s care. I feel it is important to share the heavy reality of my experience in caring for someone suffering memory loss and cognitive decline — and as a photographer and writer, laying things out in black and white will help me cope.

A Life Fading

You will forgive me if I recount very briefly who Mom and I are, so you can understand the full measure of this journey. On the surface, Mom’s life seems ordinary, and yet the more I think about it, it has been quite remarkable. She was born in a small town in central Finland after the second world war. My grandparents were both professionals. While Mom struggled in school, she was creative and talented when it came to handcrafts. Mom became a draftswoman — a job that involved neatly drawing blueprints from Engineering sketches. She was very good at it, and eventually, she moved to Helsinki where she worked for an engineering firm. This is where she met my father, a Polish engineering graduate. My father was (and is) a manipulative man, whom I am convinced is an undiagnosed narcissist and alcoholic. We are currently estranged. When he met my mother, my father was desperate to leave communist Poland and he eventually convinced her to marry him so he could obtain residency in Finland. I was born a few years later while they were living in Helsinki.

A photo of Mom and me in Helsinki, in 1977

By the late seventies, my father was already looking for greener pastures. He found getting ahead in his career was difficult being an immigrant from a communist country and if he wanted to become a Finnish citizen, he would be required to do mandatory army service — something he had already cleverly avoided in Poland. In 1978 he took a job in Canada and in April of that year, my mother and I followed him. Canada is where my siblings were later born and where we all grew up.

While Mom insisted for many years that she and my father had good years, their marriage was not a happy one. My father was preoccupied with his work and with his image. He did not have the patience for the mediocrity of domestic life and quite often Mom was left caring for us and our home on her own, while my father travelled and spent long nights at the office. She had only rudimentary skills in English and almost no knowledge of the country she had moved to. My father was not supportive of her and any attempts she made to better herself or to gain more independence. He put obstacles in her way, wore down her self-esteem and used every emotional tactic to keep her vulnerable and dependent on him.

Part of the strong bond between my mother and me is that I believe I was her bridge into life in Canada. As I started school, made friends, and lived my life, she made connections, learned English and made friends of her own. As time moved on, I was always the first person she asked her questions. With our shared language, I was able to make living in Canada easier for her. I cannot remember a time when I have not served as her advisor.

It took nearly twenty-five years, but my parents’ marriage finally ended, and Mom started a brave new chapter in her life on her own. She took the initiative and divorced my father, she went back to school and earned a diploma, and then found work as a nursing aide. She made new friends, learned Latin dance, and built a relationship with a more reliable and caring man, who to this day helps me care for her. These years were full of travel, freedom, and exploration for Mom. I now wish that period of her life had been longer.

A Disease that Steals Away Reality

Dementia is familiar to my family. My grandmother and her sisters all suffered some form of memory loss in their later years. Mom and I talked about health and the possible hereditary risks long before she became ill, and we knew dementia was a shadow very likely to cross our path again. She was very matter-of-fact about it and told me not to be afraid to do what I needed to do. I naively expected that this attitude would make things easier if we did get to that point. What is so horrible and so tragic about this illness, is that it can come on so very slowly. Those that suffer from it do not realize it is happening to them. Day by day, year by year it slowly deteriorates certain abilities and erases memories so that by the time they are really ill, their reality is something else and convincing them otherwise is pointless. The first thing we learn as caregivers of those with dementia is to meet them in their reality.

Mom and I in 2017

In about 2010, I noticed little things that worried me. Mom was working two different jobs at different nursing homes I noticed how scattered her notebook was. Mom had always kept a calendar and written down important appointments, but the number of notes and scribbles was a change which made me wonder. Her apartment was also starting to take on a more scattered state. Then she began to have difficulties at work, which was very unusual. Mom was honest and hardworking, so when she was written up for missing a shift, my curiosity shifted to genuine worry. I encouraged her to get tested, but she brushed it off and insisted she was fine.

Somewhere along the way one of her workplaces stopped giving her hours. She eventually quit because she felt she was not being treated fairly. Then a year later, the other workplace let her go for forgetting to lock a medicine cabinet. This was a very difficult turning point, where I knew Mom was not well but had limited ability to do anything about it. She justified this last turn of events by blaming management and coworkers. She was already of an age where she could apply for a pension and I suggested it to her, knowing other work was not really an option. Over the next several months it became clear she didn’t even have the capacity to apply for her pension on her own.

The months and years that followed were challenging, particularly because Mom’s fierce sense of independence made her resolute against accepting, that she was ill. She repeated herself more and more, and the news I told her one day was not remembered the next. She struggled to do things she excelled at, like sewing and knitting. She lost contact with friends, and she began exhibiting obsessive behaviour. When her family doctor called me and suggested we do a cognitive assessment, I was so relieved someone else had finally noticed what I was seeing. Unfortunately, when Mom was given the results, she became angry and decided she wanted a new doctor. It was also difficult in the beginning to get her partner to accept her illness, but over time he too admitted that Mom was not well.

And so thus I settled into the role of a caretaker. Her partner and I did all we could covertly around her, to ensure her pension was set up, and that her day-to-day life was taken care of. He cooked her meals, I ensured I could track her phone and keys so we would know where she was, and we helped her with everything. It took years — years, to get medical professionals to talk to me so she could be assessed. In some way, I am relieved the medical system is strong and protects patient privacy, but in cases such as ours, it made it very difficult to get the care we needed, because Mom repeatedly worked against us. She was finally formally diagnosed with early-stage dementia and cognitive decline in March of 2021.

Back to Finland, one last time

Before her formal diagnosis, Mom had begun talking about going back to Finland for a visit. It had been a while, nearly twenty years since she had made the journey. Originally it was she and her partner who wanted to go, and I supported the idea. I had lived in Finland for a few years in my twenties and thus had stronger ties to family and friends there now. Nevertheless, she and her partner preferred to travel to Chile (his home country) over the winters and the trip to Finland never materialized.

Then a few years into her issues with memory loss, Mom started talking more and more about Finland and how she wanted to go. I understood the longing she felt. I too missed Finland all the time and I felt if I could grant her one wish before her life became tied to a nursing home, I would grant this one. I wondered if she subliminally knew that time was running out. I talked about this with her partner, and we agreed we should try to make the trip a possibility. We decided because of my fluency in Finnish and my connection with family that it was better I went with her instead. While I couldn’t afford to go, Mom had the finances in place to pay for the journey. In late 2019 we began to plan. I reached out to family in Finland and explained the delicate nature of Mom’s health and that she wanted to come for a visit. This was met with enthusiasm, and we settled on the summer months of 2020 for our journey.

Obstacles

In early March of 2020 Mom and I made a short two-day trip to Vancouver to renew her Finnish passport at the Vancouver consulate. I had not really paid much attention to the news, but I remember leaving and wondering about all the people I saw wearing masks at the Airport. Returning home on March 9th I remember sitting at YVR with Mom and seeing the screens in the pub nearby flash the news about possible corona-virus lockdowns. I remember being amused, thinking to myself that lockdowns seemed absurd. A week later, they were a reality. It became obvious about two weeks into the first lockdown, that our trip to Finland would not happen that year. It was a tremendous disappointment, but there was nothing to be done about it. I notified my family and we all agreed that we would wait this out.

Mom and I on Kits Beach in Vancouver in March 2020, just before the pandemic hit

The pandemic brought on all kinds of new challenges for Mom and her care. Suddenly there were all these new rules, stores were closed, and her daily routine was completely changed. I tried to maintain distance from her as we were instructed to do, but in the end, I built Mom into my bubble, as she had become too accustomed to seeing me regularly. She was reaching a point where her short-term memory was so bad, that she couldn’t remember from one day to the next that there was a pandemic. We nearly lost our wits trying to get her to understand that she needed to stay home, not go to the store or that the cafe nearby was closed. I don’t know how many times she was barked at by bus drivers to put on her mask. I understood their frustrations, but it was hard on Mom and those of us caring for her.

Mom and I weathered the pandemic by getting drive-thru coffee and donuts.

As the pandemic stretched on, and vaccines rolled out, I hoped we would be able to make things happen in 2021 but with air travel not recommended and so many tests, restrictions etc. in place worldwide, it just didn’t make any sense to go until things opened more. It was disheartening, as Mom talked about Finland more and more. She kept asking when we would go and I always said, we would see next spring.

Finally, in late 2021, once we had all been vaccinated several times, I was more optimistic that international travel would be safer in the coming year. I felt a sense of urgency in making the trip happen. Her condition was worsening, and if we were going to make this trip so that it had some meaning for her, it had to be now.

We set a loose plan in motion for the trip to occur in June of 2022. We notified family and I started to investigate travel arrangements. To make things easier for us and our family, I wanted to book our own Airbnb and needed to arrange plane tickets and my vacation from work. There was also the issue that mom was a permanent resident and needed a renewed Canadian permanent resident card (government-issued identification that certifies your right to live in Canada) to be able to return home. Because of the pandemic, Immigration and Citizenship Canada were backlogged in replacing PR cards I had long since submitted a renewal application in April of 2020 and we were still waiting for it to arrive in the summer of 2021. I spent weeks navigating the Service Canada website trying to track down our application and eventually had to go to my MP’s office to get things sorted out. The PR card arrived just in the nick of time, in February of 2022.

I booked us an Airbnb for a five-week trip, thinking it was probably best to make the trip a little longer, so we would have time to see people and do the things we wanted to do. I even had the vacation time, having carried over some from the previous year, due to the pandemic. Mom was very excited and asked about the trip all the time. Then, days before we went to book plane tickets, we realized Mom’s passport was missing.

The passport we had applied for back in 2020 had been put into safe keeping in my mom’s apartment, but over the pandemic, Mom had been forced to use it as identification when going out to have her coffees. Mom was in a habit of changing her things from one bag to another all the time, so we were confident it would turn up. After weeks of hours-long searching sprees in the apartment, the passport remained missing. So, I called the Embassy of Finland in Ottawa and learned we had to go back to Vancouver, a second time, after reporting the missing one to the police.

Mom at Granville Island in 2022, the 2nd time we renewed her passport

It felt like all these obstacles were constantly falling in our path — but I forged onwards, feeling this was not just a vacation but Mom’s last wish, a final goodbye that she deserved to have with her homeland. Mom was so eager to go, and I did not have the heart to cancel. In April of 2022, I got an appointment at the Finnish Consulate in Vancouver and booked plane tickets for a day trip back and forth so we could get the passport reissued.

Then, believe it or not, the weekend before our trip, we visited with family for the Easter weekend and by Monday learned that my brother had come down with Covid-19. Sure enough, the following day I fell ill, and our passport trip had to be cancelled. While recovering that April weekend, I was weary and unsure anymore if perhaps these were all signs, I was not paying enough attention to. After talking it over with my mom’s partner, we decided we had to try — so a few weeks later in May, only weeks before our set departure, Mom and I finally got another passport appointment. After going through similar trials to get my own passport renewed, like waiting six hours in line to submit an application, we were set to depart.

The Journey

We had overcome a pandemic, government bureaucracy and covid-19 to make our trip come to fruition and Mom’s excitement was palpable. I still felt a little worried in those last few weeks. Mom was confused more often, and she had begun to wander and had gotten lost once or twice. My husband and even some friends voiced concerns over how I might manage with her alone for so long. I was confident that I could manage. I had made overnight trips with her in the past, and I was accustomed to her repetitive storytelling and idiosyncrasies. We drove to the airport on a misty June morning and boarded our first flight. I did not realize that I was beginning one of the most stressful days of my life.

Our first flight to Toronto went fine and on our arrival at Pearson, I sought out a place for us to eat. Like previous trips, we laughed and joked. Mom was particular about what she ate, but I found a place where she could have some fish and fries. We left the restaurant, and I thought the best strategy would be to find the gate and just settle in for the remaining layover.

At first, a British couple sat down beside us near the gate, and I struck up a conversation with them. We swapped travel stories and mom even engaged them. As the time dwindled on, however, Mom got restless and began to ask when we were going to board. She became uncertain we were at the right gate. The usual explanation of the time remaining to board time did not assuage her. Mom became uncharacteristically upset. I was filled with a foreboding sense of anxiety that I tried to stuff down deep somewhere so I could manage. I went to the stewardess preparing the gate, and explained that Mom had dementia and that could there be any way we could board with the other passengers needing more time? She accommodated this wish and after asking someone, Mom seemed to settle down.

I settled into the long eight-hour flight to Munich and tried to calm myself. Mom was happy now for the most part, occasionally interested in looking out the window, sometimes anxiously asked about where our other bags were — which I assured her were under the plane and that we would receive them when we reached Helsinki. At times she was puzzled why the plane was not moving, a feeling she got from not seeing the ground move as we flew through darkness. I even summoned the stewardess over to assure her we were still flying and that there were still many hours to our arrival.
Then, at some point, I dozed off after dinner and when I woke up, Mom was acting a little strange. She started to talk about “her daughter Hanne”. It made me wake up in a jolt when I realized she did not recognize me. I was overcome with utter terror. Here I was, over the Atlantic Ocean with a grown adult who had no idea I was her daughter, and I still needed to get her to a connecting flight in Munich.

The fact that mom eventually would not recognize me was something I had accepted, but it had never happened thus far. For it to happen now could not be worse timing. She asked me curiously where “Hanne” had gone and in my panic, I did the one thing I should not have done and said: I am Hanne. Over the course of an hour, I tried to convince my mother I was who I claimed to be, and she kept getting more and more upset. I showed her my passport and she suddenly claimed I had stolen it. She began to raise her voice, demanding to know why I would claim to be Hanne and that it was wrong. I pleaded with her to keep her voice down. I bought the onboard Wi-Fi and furiously began communicating with folks at home, unsure what to do. In the end, I chose not to engage with her so she would not yell. I choked back tears as I sat there feeling like the whole trip was falling apart on the first step. How was I going to manage?

Then like some miracle, about an hour later, Mom began to call me Hanne again. We got to Munich and after much navigation and struggle to ensure Mom followed me, we got to Helsinki. I was exhausted and the trip had only just begun.

I didn’t dare say anything to my uncle and aunt at first when they met us at the airport and drove us to the Airbnb. I was trying to process what had happened and wondered if through some cause of the air travel her condition was suddenly worsening. That night after they left us alone for the first time, Mom begged to be able to take the bus home. She had no idea where she was and no matter how I explained to her that Canada was far away, she just teared up and said she wanted to go home. I called my mom’s partner for support, and he reacted, likely due to his own fear, completely to contrary what I expected. He yelled at me and told me I had made up my mind to do this trip, I had to be responsible for her and do what needed to be done — either make the trip happen or come home.

I was devastated, but I took a deep breath and called my aunt. I told her what had happened on the flight and that evening, and she and my uncle explained that I needed to give it time. The changes in her surroundings and the exhaustion from the journey were likely making her confused and over time she would settle. We went to bed that night, me wondering if I had made a huge mistake.

Managing

My Aunt and Uncle were correct that after a few days my mother’s inclination to go home went away and she settled and even began to enjoy herself. My uncle was brilliant with her, he told all kinds of jokes and got her laughing. I started to feel that perhaps things would be okay after all. What did concern me, was that mom gave indications that she didn’t always know who these people were. While talking with her brother, she would say “My brother Vesa” and he would say “yes me, your brother Vesa” and she would laugh, but clearly could not make the connection. In the evenings we took long walks to wear down her restlessness and I took on a matter-of-fact approach to her questions about where her dog was or her partner. I tried to move along with our plans, visiting family or going into town to see places.

An grey haired man holds his hand around the shoulders of a white-haired senior woman, they are both smiling.
Mom and her brother, together at Suomenlinna. A good day.

After the first week, I learned and noticed things about Mom’s condition that I had never previously realized. She was obsessive about her belongings and felt a keen need to constantly inventory and sort them. She was not eating very well and chose candy and sweets over proper food. She was reluctant to bathe and often wore the same clothes over and over. These are normal tendencies for people with dementia, but I had not seen how bad they were until I was with her around the clock. I felt at first upset with my mother’s partner for not telling me more clearly how things had deteriorated, and then I felt terrible that he had carried such a burden alone. He had often said to me that I didn’t understand but had never explained why. I now realized seeing Mom for a few hours a day was very different than being with her 24/7. Had I understood, I might not have made the journey.

A senior white-haired lady sits at a table focused on a small assortment of things on the table.
Mom sorting her things at the Airbnb

There was no way to change the fact that we were now on another continent, so I found a way to manage her endless energy and worked around her obsessive tendencies to sort her bags, her insistence on cleaning the apartment, emptying the garbage several times a day and even water the fake plants. We were able to see family, but I realized very quickly that they were eager to reminisce, look at photos and engage with Mom and she was trapped in a few random memories, not all of them pleasant. I also realized that reminiscing was not something mom could really do anymore, she always came across gaps or had the memories confused. I felt terrible and wholly responsible for this predicament.

I am an educated and well-read person, and I’ve done my fair share of reading about this disease but I had yet to read that a chief strategy for dealing with dementia sufferers is not to ask them what they remember. To do this puts them in a position of realizing they do not remember and makes their anxiety worse. Our family, with best intentions, had prepared to spend time reminiscing and all this did was confuse Mom and ramp up her anxiety. I had put her into a place where everyone was expecting her to remember, and she couldn’t.

There was nothing to do but forge onwards. I was hoping that at the family summer cottage we would have some joy. This is the place she had talked of most, the cottage her parents had bought when she was young and where she had spent so many summers as a child. The place was special to her, almost sacred to me. I too shared my own memories of the place. Even while on the trip, she had asked when we would go to the cottage, and she could go to the sauna** — so I was hoping this would be a good turn in our trip. I prepared mom for the journey North and things seemed to be on track. We packed our bags and met my aunt at the main Helsinki train station, my uncle was waiting for us at the receiving end.

On the journey, mom enjoyed watching the Finnish scenery and even a visit to the restaurant car. When we arrived at the cottage, however, Mom’s demeanour changed. She became anxious like she had the night we had arrived in Helsinki. I couldn’t understand. Wasn’t this what she wanted? She had talked for years now about how she wanted to come here. My siblings had heard it, and her partner had heard it. All the work and toil and planning had been for this, and she wanted to leave as soon as we arrived. I explained we were staying at the cottage for 4–5 days and then going back, but she became instantly concerned that she had left behind things at the Airbnb and that she wanted to go back to retrieve them. My Uncle and Aunt tried to help me by distracting her thinking, to get her excited for midsummer, for good food, for the sauna, but nothing seemed to work.

That night as I sat alone sweating in the sauna (Mom had refused to go) I faced some difficult facts. The trip was not going well. Mom was not coping with the change of scene, nor was she fully comprehending where we were. I also was not coping well. I was existing in a constant state of fear, overwhelmed at how different she was. I was feeling responsible for taking her on a journey that she now clearly had not been well enough to make. I had to accept that likely, Mom’s talks about Finland were the result of her disease, rather than any conscious desire to go there— or even if her desire had been real, she was longing for a Finland that was no more, a Finland of her past. Had I separated her talks about Finland from the others she made, because I wanted to give this to her? I didn’t know, but I knew I had to do something. That night I decided we would go home to Canada early. I rebooked the plane tickets for a return much sooner than planned, and Mom and I left the cottage before midsummer even arrived.

Mom enjoying a coffee along the Helsinki docks. She looks happy but this was a difficult day.

Long Days in Helsinki

I got Mom back to Helsinki, and with an earlier departure back to Canada now twelve days away, I resolved to make the best of our time there. On returning to Helsinki, Mom settled down and seemed happy in the interim. I decided to take the opportunity to walk the city with her. Every day I planned an outing or an area of the city I wanted to photograph, we would travel there by transit, afterwards, we would then have coffee somewhere and return home.

Mom’s need to walk off her restlessness was challenged by an unprecedented heat wave that made walking outside nearly unbearable. I found shopping centres, museums, and any place air-conditioned so that we would not be hit by heat exhaustion. We had some good times. Mom enjoyed reading all the signs posts and posters, we visited old parts of town, walked along the marinas and even visited with some family and friends again. She was always quiet when we visited with others, but then later said that it was nice. This made me hopeful that the trip was not a complete waste.

We also had rough moments, particularly as Mom now tended to be very sensitive and misinterpreted my silence as anger. We were both emotional and worked to tears at times. At night, I lay in bed questioning myself, counting the days and worrying about what the trip home might yet entail. I am indebted to my Uncle, Aunt and dear friend Anne-Mari for helping me keep Mom occupied over those last days, and for my husband for keeping me calm as best as he could from the other side of the planet.

We watched a lot of TV at night in the Airbnb to keep Mom occupied.

Muistikuva — memory image

In Finnish, we have a word called muistikuva which directly translated means ‘memory picture’. The more nuanced definition is remembrance, recollection, reminiscence, a person’s mental picture of something that happened to him in the past.* I have been thinking about this word a lot as I have returned home to unpack my bags and my feelings.

Memory is a fascinating thing, that I clearly need to read more about. As a photographer, I have always felt that photos, as material objects, are an embodiment of memory. Much like photos, past events imprinted on our minds, change to have different meanings. A happy memory for example of a gathering or a meeting with friends can become a sad memory later when one of those friends passes away that same day or shortly after. Memories carry so many nuances. They can mean something special to one person, and nothing to others. Over time we also unpackage memories as we grow and change. In photos from my preteen years, I appear a happy and cheerful young girl, but I now remember that those developmental years were some of the unhappiest of my life.

The fluid nature of memory is one of the things that makes Alzheimer’s and dementia such terrible illnesses. If what we remember can change even when we are well, imagine how utterly confusing it must be for those with the illness. Happy memories are mixed up with bad ones, separate occurrences become combined, deaths get forgotten, and people and places get confused. It’s like all the photos in their album fall to the floor and disintegrate into a million pieces. They are left putting together their memories over and over, and the picture is never quite right ever again.

On cutting our journey shorter, I have been told by many family and friends that I did a brave and noble thing in even attempting the journey and that I should not be ashamed or too hard on myself. I still cannot help feeling hollow and a little bewildered, after pouring so much effort into something for years — only to have it fizzle and end so differently than expected. As I said at the beginning of this story, I’m not an expert, and it is likely the travel and change of scene that instigated some of the changes in Mom. There is also the fact that some aspects of her worsening condition were not made apparent to me. I also overestimated my own abilities to cope with her alone. No one can tackle this disease alone, that much I have learned. I have also learned that no matter how sincere and genuine, our best intentions can still be wrong. When that becomes apparent to us, all we can do is take the steps to repair our wrongs.

Even in my weary state, I do not believe our trip was pointless, as seeing Mom for the last time was certainly meaningful for her brothers and cousins, and as my friend, Anne-Mari said: “Whether she remembers that we’re at home or in Helsinki, you spent that time with your mom and that was kind and good of you. And you yourself will remember the good points of this trip, as you move forward.”

And as I now face the path ahead of getting mom into care and coping with her further decline, I cling to the idea that someday when I go back to Helsinki, I will be walking down a street and I will be able to recollect and reminisce how Mom and I walked there together, on this one last journey.

https://en.wiktionary.org/wiki/muistikuva

** For background on the significance of sauna in Finnish culture see Bare Facts of the Sauna

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