Living with dementia Blog post by Petri Lampinen, "My life with FTD"


Thank you for the opportunity to share my experiences of living with frontotemporal dementia (FTD) with you.

At one time, I would have liked to have an opportunity just like this; one which you now have. At the time, I had to rely on social media and luckily, I found fact-based and informative videos on YouTube, such as lectures by neurologists and neuropsychologists from around the world, about this disease and its extensive symptomatic scope. I also found stories of families with children or young people living under the same roof as the affected person, when the illness came into view.

We just had that same situation and of course, the memory disorder that came into our lives didn't just affect me. That time was a very foggy time for the family and I thought my life was completely over at the time. Without the support and understanding of loved ones, I probably wouldn't have been able to find a brighter time.

The most stressful time was a period of two years, before receiving a diagnosis of memory disorder, but let's go back a little in time, when the disease showed the first signs of itself.

While I was still in work, I couldn't stand still and I was always moving. I couldn't wait to take a lunch break for more than 15 minutes. I didn't finish my work, moving hastily to other tasks. I forgot about scheduled meetings and deliveries. I had been a parish gardener for a very long time, and I too noticed that something was seriously wrong with me by then. At the time, I was very keen to contact occupational health care. However, the threshold for going there was quite high at that stage. Fear of losing a job and financial difficulties were a real worry.

At that point, I sought help, but unfortunately in the wrong direction. During that time, I started self-medicating with alcohol. In retrospect, it was the worst thing I could do to myself at the time. I haven't consumed alcohol in eight years now, having stopped when I got up the courage to seek real help for myself.

My wife often asked me, "What have you changed in the world of work since you don't seem to be doing well there anymore?" I think I often complained about the problems there and I was also irritable when I was at home. She also often questioned alcohol consumption, I told her that there was no problem. I didn't always remember where I had put my drink.

During that time, I had become a very impulsive man who used alcohol at every opportunity. The combined impact of these two things on each other led me to make rash decisions. I had secretly obtained loans and consumer credit using my wife’s details, to maintain my own irresponsible activities. I remember those very difficult times and how hard it was to hide these things from my spouse. It ate us up from the inside and produced a lot of supervised nights.

It was the summer of 2013. I had turned 50 in the spring, I took a summer vacation in July as planned. It wasn't part of the plan, though, that I'd never go back to work. While on summer vacation, drinking got out of hand and I got caught out by wife, about my debts. Our family was in the midst of a crisis and that's when I hit rock bottom. At that time, I finally dared to seek help from occupational health care. I remember crying in the reception room and telling them I needed immediate help. I told them I no longer recognised myself as the same Petri I'd been before.

The occupational physician quickly referred me for an acute psychiatric appointment, and from then on, a new direction began for a better future. The family and other loved ones were heartened by this new situation. My wife had lost confidence in me, and the most important thing in that moment was to get it back to normal so that our family wouldn't fall apart. The number one priority at that point was to stop drinking alcohol.

As a psychiatric patient, I was initially seen for about three months, attending a number of ‘interview’ sessions with them. I was prescribed antidepressants and sedatives. Unfortunately, these medications made me even more confused and gave me scary nightmares. I was told I was sleepwalking, too.

At home, more and more problems began to arise. I moved the dirty dishes from the dishwasher into the cupboard with the clean ones, and other similar problems began to arise even more. Family members also began to fear for their own safety and mine. This was very understandable, and I myself was thinking about this same thing.

I told a psychiatric nurse about these things and she decided to give me a short memory test. I was given three words to remember, but I couldn’t do it. He referred me to the on-call neurologist. In a previous blood test for my thyroid, there was also something wrong, so I was a patient of psychiatry, neurology and internal medicine at the same time!

I started to have more and more trouble when I was at home and also when I was driving. At this point, I stopped driving voluntarily because I felt I was a danger to myself and others on the road. Over the next two years, no healthcare professional asked me anything about my right to drive. When drafting the invalidity statement, I told the doctor about my existing driving license and told him I didn't always notice traffic lights or traffic either. He told me that, unfortunately, he had to inform the police, whose transport department invalidated my license.

I was lucky enough to be able to talk myself into the old people's psychiatry department, which was no easy thing. There, for the first time ever, I was really listened to and they began to carry out blood tests, memory tests, neuropsychological tests and imaging studies.

After a week in the old-age psychiatry ward, the psychiatrist told me that he suspected I had a brain disease called FTD. This came completely out of the blue, as I had never heard of the illness in question. He told me it was a rare memory disorder and fitted well with the symptoms. I'd never heard of anything but Alzheimer's before. Let alone that when you're still of working age, you can get a memory disorder.

I was in ward care for five weeks, though at weekends I could always go to my family. This period was becoming an increasingly long period in my life. During this course of treatment, I met people who were in a worse situation than I was. I felt like I was at the bottom, but I knew I had two choices; give up or don't give up. Fortunately, I was able to choose the latter option.

I spent a few months as a client of internal medicine. On their side, they found that certain blood levels in my thyroid gland could not cause the extensive problems I had. An internal medicine physician also thought that FTD could cause these problems. He also contacted the neurology outpatient clinic and asked for more extensive brain imaging. I had already been studied many times on the neurology side and there had been more emphasis on psychiatric illness.

I had been diagnosed with moderate or severe depression. I had also been diagnosed with memory disorder and psychosis. The main problem during that period was overly high demand for appointments and the lack of communication between certain units. They didn't always know what the other unit was doing.

One example of this: I was checked out of both the psychiatry and the neurology units during the same week. I was then left completely without care and had it not been for the help of one psychiatric nurse, I would have been completely helpless. He contacted occupational healthcare and I returned to them after a break of more than a year. I provided the occupational health doctor with my patient records in advance and after examining them, he interviewed me carefully at the clinic. He prepared a referral to the TAYS Neurology Outpatient Clinic and fortunately this referral was approved.

After a few months, neuropsychological tests and medical examinations/interviews were conducted in that unit. It wasn't that long before I finally got my diagnosis of FTD, which was a great relief, because now I surely knew what disease it was. I had felt, during these two years, that depression was not the issue. I was happy and I did a lot of things, even though things didn't work out the way they should have. Luckily, I had support available and it made me wonder how someone could manage through this alone.

I am glad that more is known today about this disease. Finland is doing great research. In the future, a diagnosis will be obtained more quickly and with more certainty. Sufferers and loved ones may have an easier path than mine. There will certainly also be savings for society with a faster diagnosis.

At the beginning of this text, I told you about how I watched foreign videos about memory disorders. I had watched them very often during this two-year period, so I already had information about my disease. I received more information from the local Memory Association and my family also received peer support, advice and brochures from them. It was worth opening the Memory Society’s door and stepping into their activities. Since my working life ended, I have also gained new social contacts through them. Over the years, my own and my wife's path has been routed through memory actors of the Memory Association into experience actors.

In the European Working Group of People with Dementia (EWGPWD), I started my fourth year at the beginning of this year. Through this group, I have gained more involvement in life, sharing experiences and learning new things. The help of my wife, loved ones and friends has played a major role in the experience. My wife has worked shorter hours to help me, and many acquaintances have also assisted me when needed.

I have applied for and received neurological rehabilitation and during the adjustment period I was with my wife. These periods have been very useful. I have also applied for and received services for older people and for people with disabilities. I have received transport services based on severe disability when living in Hämeenlinna. They also gave me the right to a personal assistant, daytime activities, and my wife got the right to an informal care allowance. On the elderly care side, I got into a group of strength and balances guided by a physiotherapist. Home care visits worked with me for three years. Over the years, I regained my sense of security and with the change of residence, home care visits were stopped.

A detached house was no longer the safest option for living and nowadays we live in a terraced house in Seinäjoki. It is very difficult to draw up applications. I had to reapply for all disability services when we moved to Seinäjoki and I didn't get all the same services as when I lived in Hämeenlinna. Unfortunately, the same criteria are not being followed in different parts of Finland at the moment.

I maintain my ability to function with diet, social contacts, exercise and even the smallest things in everyday life. I do things that I like for myself, as much as I can independently do. Safety is important and also the art of forgiveness. You don't want to get stressed if something doesn't work out the way it used to. If you get stressed, you'll be in even bigger trouble. I have said these things to myself and learned from my mistakes.

I lose a lot of things, and of course it's going to cause me a lot of difficulties. On the train or bus, I hold the strap of my bag, otherwise it will be forgotten. I have problems with attention, concentration and short-term memory. I'm also very accident-prone, I stumble easily, and my wife sometimes has to patch me up. However, I keep moving forward, with curiosity and courage.

The everyday supports I use at home have helped me really well. I've been using a big whiteboard on the wall for eight years. I mark my upcoming events, tasks, appointments. I also put information on it for the family if I go somewhere, like where I am. I use coloured markers and magnets to help me mark things clearly. I also take a picture of the whiteboard on my phone from time to time, so the information goes with me when I am outside. I have also made various checklists through which I can check that everything has been done or that I take what I need. Smoke alarms are also in the rooms and I don't light a candle indoors at all.

I've given a face to a memory disorder without being ashamed of it. Memory disorder is a neurological disease and does not only affect older people. I've been without disease monitoring for just over six years. Fortunately, things are now changing, the Hospital District of South Ostrobothnia is just finishing a treatment path for people with memory disorders, and hopefully there will be a pathway for working-age people as well. This path should be created nationwide, equally for all. Over the years, I have tried to influence people's attitudes to this disease. By doing small things, we can change things in a more memory-friendly direction.

The years have passed. It's been eight years since I left work and six years since I was diagnosed. I've regained the confidence and appreciation of my wife. It feels very good. I understand more and more about giving her value and love. She could have abandoned me, with the difficulties my illness has brought. Such as when I made financial difficulties for her. Over the years I have taken responsibility for these things. I still feel bad, but the psychosis, impulsivity and alcohol consumption that came with the illness led to these irresponsible choices. We try not to go digging into the past, but rather we do and experience many things together, because we don't want to waste our remaining days worrying about things.

Despite my illness, life has given me things over these past years. I continue to move on and believe life still has more to give. I am prepared for the progression of the disease, for any treatment that will be made and have prepared an advance directive. I have also told my wife and children about my wish to be separated from my family if my behaviour becomes aggressive or too heavy for them. I've prepared a playlist and picture galleries for myself at that worse time, in the hope that maybe they'll calm me down. I hope that time doesn't come, but life is full of surprises and so am I. It is not worth giving too much power to fear and too much thought.