We struggled with my wife Eeva's Alzheimer's disease for 18 years (2002-2020). We always moved together. I cared for Eeva at home until the end. We also travelled abroad as long as possible.
The younger Alzheimer's attacks, the more virulent it is. That's what happened to Eeva. In the spring of 2007, Eeva was already in the severe, or terminal stage of the disease, which usually lasts a couple of years.
We were with Eva in Spain, in the mountains of Andalusia, in Orgiva from February to May 2009. Eeva's illness was so far advanced that she was no longer able to properly verbalise her wishes and needs. I was worried that if something happened to me, no one would know what she considered important for her quality of life. So, in the evening in mid-March, after Eeva's evening feedings had been taken care of, her medication and herbal remedies given, her hygiene taken care of and she had been put to 'bed for the night', I went to the toilet. It was the only place in our hotel room where the light did not disturb Eeva's sleep.
I sat down on the toilet seat with a large, empty checkbook and pen in my hand. In my pain, I began to ponder what it meant for Eeva to have the best possible quality of life. Soon I had many questions, but no answers. The notebook remained completely blank all night. Despite all my efforts, the notebook remained blank the next night - and the next night. This went on for a week and I became even more anxious.
The second week began and in the evening, after taking care of Eeva, I went to the toilet to sit down. Since 1976, I had been consulting for the Ministry of Finance on training and building projects in computational modelling for ministries and agencies. In 1980, the Ministry of Finance invited me to lead these training and construction seminars and I led them until 1984. During these years, a total of 35 computational modelling projects were carried out by experts from ministries and agencies (more than 300). In total, I have played various roles in about 50 model building projects during my career and beyond.
In addition to decades of model building, since 1980 I have also been involved in values for society, communities and individuals. Our values are all the energy we have. Only those values that energise us have meaning. Other values we can throw away.
Eeva's and Petter's quality of life model
Eeva and I were in Alzheimer's rapids for 18 years. Someone
someone else is in the cancer rapids, someone is in some personal
crisis. No one has yet come to me to tell me that his or her
there are not enough rapids in his life. Everyone has enough rapids, or at least at some point in time. Drawing by Tuomo Veijanen
Eeva and Petter at the Peace Corps (UN Finnish Battalion 6-8, Cyprus 1967-1968) reunion in Helsinki in 2012. Photo by Heikki Kahrama
Eeva's and Petter's quality of life model
My model and value consciousness began to give me a little glimmer of hope and hope that we each have our own quality of life model that we use to make our lives better in the face of adversity. Our model works so well that I have never heard anyone who cares about themselves seriously ask others how they can improve their own quality of life.
For the seriously ill, the critical factors of quality of life should be identified. Gradually, in the quiet hours of the night in the toilet, I began to realise that the key core issues of quality of life are the same for individuals, families, communities and nations. Two critical elements were self-evident from my expertise: security and freedom. The third factor I had to think about for a longer time. Little by little, it began to take shape in the way things were managed.
I had to spend even longer thinking about this from the point of view of a person with a memory problem. When a person is no longer able to control things because of memory loss, it is important that they have someone close to them whom they trust completely and with whose support they can maintain a sense of control for as long as possible. Then, when the sense of control is also lost, a touch or a voice from a loved one is enough to ensure that they are cared for as well as humanly possible.
When I finally got down to writing, on the night of the second week I wrote 49 pages in the toilet with a pencil on a piece of squared paper, and there was Eeva's and Petter's quality of life model. Over the Christmas nights of 2010, I built our quality of life model into a general crisis time quality of life model. During the four nights of February 2012 I built a general crisis time quality of life model for online publication www.elamanlaatu.fi. It is also called Eeva's and Petter's Quality of Life Model.
Our quality of life website has already had over 500 000 visits. The magazines that have featured articles about our model and our coping with Mr. Alzheimer's have over 4 million readers. ET magazine ran an article about Eeva and me in 2019: Together towards the evening. It was nominated for the best magazine story of the year and eventually came second.
This article is a testament to what Eve and I learned 18 years of struggling with Alzheimer's.
I will continue to work after Eeva to help people with memory loss, including by updating our quality of life pages with news about health and quality of life.
The core of Eeva's and Petter's quality of life model:
People with dementia are heroes.
The core issues of quality of life
I use cosmology to describe the difficulties and crises we face in our lives, and which we try to overcome as best we can.
All 8 billion people on the planet are struggling to the end with the three core issues outlined in our quality of life model. These are security, freedom and control. All previous generations have certainly done so, and all future generations will do so.
Quality of life is volume in 3 dimensions
3. Management of affairs
Compare: volume = length x width x height
If any one factor is 0, then the whole volume is 0.
This is also true for quality of life.
In our quality of life model, I group the practical things to be taken care of into ten categories that need to be taken care of in practical life. Although I have numbered them for clarity, they are in a completely random order. All 10 groups of issues need to be taken care of as well as possible to ensure a high quality of life.
Eeva's and Petter's quality of life model
1. Medicines, vitamins and natural supplements
2. Safety and presence
3. Healthy food
4. Physical exercises
6. Sauna, hygiene and beauty care
7. Rehabilitation treatments
8. Special requests
9. Keeping up with life
10. Peer support and friends
Note! To maximise quality of life and well-being, it is always worth improving the aspect that has been neglected or not addressed at all.
As we are all well aware, the care sector is in great shortage of many resources. That is why I have included free resources in our model.
Five free resources: Positivity, humour, gratitude, hope and joy.
There are five free resources available to all of us if we so choose. These resources cannot even be bought with money.
To help us better remember these resources, I have linked them to the fingers of our hands. This way, they are always with us, alongside our other uses, to remind us of these resources.
1. Thumb: Positivity. Every cloud has a silver lining. A rich life doesn't cost much (Pirkko-Liisa Perttula).
2. Index finger: Humour. Even in war, the tougher the place, the harder the humour. Good humour is what "welds" a group or community together and gives it strength. It gives courage to fight to the last, even when faced with impossible tasks.
Humour is a value, a resource and a "breeding ground" for values. No matter how good our values are, only the right humour can make them work properly, i.e. get the "turbo" on.
3. Middle finger: Gratitude means that we have received something that we did not deserve. Gratitude is the shortest route to happiness. A grateful person cannot be unhappy (sad though).
"Gratitude is the golden edge of life" (Matti Otala).
The only way to spread happiness is to share it with someone.
When we are in the greatest difficulties of our lives, gratitude is the only one of these five free resources that is useful.
4. Untitled finger: Hope. Pentti Haanpää has said: "Hope is the resource upon which we will step into tomorrow." When we lose hope, no matter how well equipped we are to survive, we are doomed.
"A drowning man grasps at straws." I used to be a little amused by this saying, but I'm not anymore. Now I think it might be more like, "A drowning man will hang on longer if he knows there is at least a straw coming from upstream."
5. Little finger: Joy. The joy that turns to peace as the strength fades.
"One joy dispels a hundred sorrows" (Chinese wisdom).