To enjoy a child, be a child!

 

Today, as I care for a person suffering from dementia, I see there is a childlike behaviour that takes place progressively.

The first reaction would have been to become impatient with this behaviour.

But when Annikki was studying for the Montessori course, she could not type, whereas I had a good typing speed. She would wait till I got home. During the day she would research and prepare her notes. After dinner, she would sit by my side and dictate her notes to me. 

That way I was fortunate to have a great teacher without any effort on my part as she got 98%, continuously for 3 years,  for her work.

But what is more important that God saw what lay ahead of me and taught me all that Montessori was all about, preparing me for what lay ahead.

The main thing I learnt from her thesis is that the Montessori philosophy is that the Child is the Fsther of Man,

Now as I care for my loved one, I believe She is the Father and I learn from her day by day, to laugh and be happy, happy just as the children she raised so lovingly over the last 56 years. 

She never even once got angry with them!

 

When today she repeats a story from her past, 20 or 100 times, I listen patiently. 

When she laughs, I ask her what makes her laugh and laugh with her.

I was an impatient person, always wanting to get ahead in life. Annikki has always been a meticulous person and every thing she did, she knew the purpose.

I have tried to become like her. I admire how she tackled my impetuousness and my desire to run before I could walk.

Today I am calm and collected and enjoying her beautiful childlike behaviour.

 When I am away from the room, she will call to ask where I am, just like a child calls for her father. I reply and she understands and is reassured that I am nearby. 

That is all I can do today, reassure her that love is nearby and at her service. 

It is a pleasure for me to know that I am not forgotten but always still in her thoughts!

Just today a friend sent me a note which I reproduce below. Remember, this is a two way street!

 Nagma Khan

To enjoy life like a child you need to have certain other traits of a child. Some of them are listed below: (Please feel free to add more)

• Do NOT hold grudges  - let go off anger and bitterness, they benefit no one and they will harm YOU the most.
• Find happiness in little things - you don't have to be a millionare or you don't have to be the successful person to be the most happiest. A happy person finds happiness even in the most simplest of things. Try and be happy with whatever you have.
• Do not be TOO content - well seemingly I am contradicting the previous point but actually I'm not. Just like a kid finds happiness in certain things but they are never too content, they are always on the move, venturing out to try new things. Similarly in one's life one should always strive to do better each day, learn new things,outperform themselves. As someone put it,

"Learn to be happy with what you have while you work hard towards what you want"

• Never give up - just like a kid, no matter how many times you fall down, no matter how much you get hurt, always have the courage to get up and the faith to go on.
• Learn to trust - one of the most remarkable things about kids I think is the way they can trust their parents, family, etc. That way they will have complete faith that no matter what happens, their loved ones will be there for them. If only all of us can trust our loved ones like that so many problems can be avoided.
•  
  Annikki and her childlike laughter
  
  
  
• Laugh a lot - yes, even at the most stupidest of jokes, even at your own miseries, with your friends or alone, just laugh away. Laughter is an awesome medicine!
• Think positive - look forward to each day just like a child looks forward to an ice-cream treat, accept life as it comes and have a positive outlook, this change of perception works wonders!
• Pray - do it everyday just like kids do, it will give you the scope to reflect on your life and sort out many issues. If you are an athiest then you may try meditation. Cleanse your soul, your mind automatically clears out.
•  

Thank you Nagma Khan for this lesson.

All these points above are the lessons that Annikki taught me 3 decades ago when she was studying her Montessori course.  

Every evening, before we go to bed, Annikki, even in her childlike behaviour, will ask me to tune in on YouTube to a sermon from her church. 

She will listen for an hour to the pastor who talks the language of her heart. Every word is pure gold to her! 

Then I tune to an YouTube channel (a Canadian singer and violinist Rosemary Siemens) which plays soft hymns. There are hundreds of tunes, but even with dementia taking over her life, she can remember every tune, and she can silently aing thetunes she knows. (Music is one of the last traits that vanish in dementia. As a child, Annikki sang all the time, and even today she tells me that when she went to school, in the class breaks, she sang continuously. And she had a beautiful voice.)

As she drifts into sleep every, I slowly dial down the volume. When she enters her deep sleep, I close the singing, knowing that she is at peace with the world.

Living and coping with dementia

It is heart breaking to live a tragedy unfolding in front of you, day by day. 

This blog entry tells a story of our livesAnnikki and Jacob, as it is today and the history behind it.

As a postscript to this entry, I have added an AI generated essay about dementia.

Annikki enjoying the sun on the  swing gifted in to her by several members of our O-India Google Group.

I ask you, dear readers, to say a prayer for my beloved as she goes through this stage of her beautiful and gracious life, where she has brought happiness to all around her.

Matti Reinikka (1916-2001)

Matti & Hilja Reinikka after Matti was demobbed after the war in 1944.

In 2001 when Annikki’s father, Matti Reinikka, passed away, Annikki took the responsibility of looking after her mother, Hilja.

Before taking over this task, Hilja was admitted to the Oulu City Hospital to assess what was her current health condition.

An MRI of the brain revealed that she was suffering from advanced stages of dementia.

The doctors prescribed a few medicines but stated that there was no cure for dementia. They also said that rate of decline would be greatly reduced if the person remained in her own environment that she was familiar with.

We were living in a beautiful penthouse in Torikatu. Hilja was living with her youngest son who was an alcoholic. He would leave his mother all alone in the house and go away with his friends on drinking bouts.

On a couple of occasions, the old lady was left all alone in her house and at the mercy of total darkness and isolation.

After discussion with Annikki's other siblings, it was decided that Annikki would take care of her mother in her own home as advised by the doctors. The financial responsibility would be handed over to a public guardian of the City of Oulu.

As the physical strength of Hilja was gradually waning, Annikki got permission to modify the house progressively so as to look after her mother.

For instance, the only bath facilities were the sauna in the cellar. Hilja's physical strength was diminishing till one day Hilja, who had her room on the upper floor, was unable to manage the stairway to the living area and found it impossible to go down to the sauna in the cellar.

Annikki made an application to the city to modify the small toilet into a proper bathroom. She moved Hilja from the top floor to the ground floor which had a small bedroom, the kitchen, dining room, the living room and the modified bathroom.

As physical strength gradually further diminished, various devices as a walker, then a wheelchair had to be obtained to make life comfortable for Hilja. 

A bed which had constant micro vibrations so as to allow air circulation under the body was obtained. This was to prevent bed sores from developing. A lifting sling device to carry Hilja from the bed to the toilet and then from the toilet to the dining area was also provided by the city.

So as to give Annikki time to recuperate from  this backbreaking intensive routine as a caregiver, Hilja was admitted to a care home for one weekend every month.

Although this was beneficial for Annikki, it was a great detriment for Hilja, as every time she returned home, Hilja was significantly weaker than when she went it.

Hilja celebrating her birthday at home.

Annikki and Hilja going to care home.

Four generations , Hilja, Annikki, Susanna and Asha.

Whereas Annikki was always there to keep Hilja active at home, feeding her healthy foods and vitamins she had greatly researched, in the care home Hilja was left to her own devices so she had no movement or personal care.

We had no option even as the deterioration of mental and physical strength was progressing rapidly.

In 2008 August Hilja was moved from the care home during her periodic visit to the hospital where she passed away peacefully.

Thosc 8 yesrs she enjoyed being with her daughter who fed her, cared for her in every way, sang and prayed with her every evening. Finally Annikki fondly said goodbye to her mother aged 88.

Used bulbs were painted to replicate pears and used in interior decor.

Birthday greetings for me as a snowman created by Annikki.

Replica of the garden of Hilja designed and created by Annikki as a gingerbread creation.

During those years Annikki kept her own artistic life active with her own designing work, making her mother's garden something her mother could enjoy from her kitchen window. She continued with her cake designing, gingerbread house creation, kept her own reading active, and lived a full life as a daughter, wife, mother and a grandmother.

lol

Garden designing by Annikki.

We then moved to another house and Annikki was enjoying all the beauty of her life freed of a great responsibility. Annikki was positive and active looking after her beautiful home and garden, me and our son, Mika. It was a very positive time of her life in every way after 8 years of limited freedom.

Snow volcano and moon in our garden designed by Annikki.

But after a time I noted that Annikki was starting to show signs of forgetfulness. We would go shopping, come home, and she would put the shopping away but then ask why things we had bought were missing. 

This was not taken seriously by me as Annikki was super active in many other ways. She was active with reading the newspapers and sending powerful text messages to them showing defects in the Finnish system. 

Coffee table book about my school Class for our Golden Jubilee Reunion done with Annikki’s assistance.

She helped me prepare the Coffee Table book for the Golden Jubilee Reunion of my class of 1959 Cathedral and John Connon School, Bombay. 

We started a furnished apartment business helping the IT engineers coming to work in various companies all over Finland. She furnished the  apartments so that they would be comfortable and joined me in looking after their every need. 10000 Indian engineers passed through our hands.

Her cake designing work was spectacular and with the help of a young NOKIA engineer, Sriradhakrishna Polsetti, we released a beautiful coffee table book of her creations. 

She. produced a hard hitting book about "Freedom of Speech - Whose?" criticising the situation of freedom of speech in Finland. 

With all this activity, I could not see that Annikki was deteriorating in her mental faculties and that the roots of dementia were taking hold of her.

She never lost her sense of humour and was delightful from morning to night.

She would spend hours with her new hobby, crocheting. 

She was enjoying life creating her beautiful garden, working long hours. She did all the snow work during winter. She made unique creations of cakes for Indian IT engineers representing traditional Finnish culture.

She would enjoy her evening baths, spending many hours sitting and reading while enjoying the joy of baths.

The house was a reflection of Annikki's art becoming a personal museum of her creations and thrifty purchases. She had shelves fitted everywhere to house her enormous collection of glass and other artefacts she had collected from the flea markets.

When some Indian friends of the O-India Google Group, who loved and respected us gave coupon from Prisma as a gift, I bought a beautiful garden swing which she enjoyed whole summer.

She enjoyed her time with her grandchildren, shopping or teaching them to design cakes.

We went to India in 2009 and again in 2014. When we returned in 2014, we both had suffered brutally from the pollution that we decided that we could no more travel to India. Our last major work "The Titanic Called India" was written after that visit. 

Then in 2016 I was struck by a massive heart failure which took me to within 2 minutes to death. It was Annikki's rapid reaction which helped me survive.

As I was in hospital she tried to reach the hospital and was unable to do so wandered off and got lost till one kind lady called the police to get her home. She could not remember her way to the hospital.

This had a dramatic effect on Annikki's life as dementia came on her rapidly. Her short term memory fast approached zero. She became paranoiac, which was completely out of character for the wonderful happy spirit of Annikki. 

She broke her closest relationship she had with her sister from Helsinki. It was a dramatic turn for the meek and mild personality that I knew. She could not do basic things as count money, do shopping or even cooking. She could not switch on the stove or kettle. 

She lost all sense of personal hygiene and fought with the home helps who came to give her a bath. A cleanliness fiend was now the other extreme. She could not dress herslf. She lost all knowledge of her clothes. I had to take care of everything.

But she kept her love and passion for me, our children and grandchildren. Her physical strength was waning and it became impossible for her to maintain the garden, especially in winter.

As God would have it, there was a calamity in our home in the winter of 2021 and we had to to move residence, hoping to move back in summer. I found a small two bedroom apartment, but it was woefully inconvenient. After 10 months we got another more suitable three bedroom house.

We had to move 4 Tonnes of rubbish.

 We had to clear our old house and that meant getting rid of a lot of the treasures collected by Annikki over her forty years in Finland. Her dementia was so strong I had to throw out a lot of what she had so carefully collected and preserved.

A few people came forward to help. I must especially mention a Phillipino couple Mary Jane and her Finnish husband, Arto, another Phillipino gentleman, Gabriel, and his friends, Dhanpal Singh and his wife, Raji an d their two children, Anu and Ankit. 

Dhanpal and family showed enormous heart and their true "pahadi" character helping me with this enormous task. 

Others were two friends from Paris, Said and Shafak, Kannan Balaram, an Indian from Pondichere/Riihimäki, Sanjay Patel, an Indian born and brought up in New Zealand, who had come into my life as a pharmacist during my long stays in the hospital, and a Palestinian, Zaid, whom I have known from the time he was 5 years old boy.  

It was good to know the true nature of the majority of this community. I do not blame them as I did not ask for help!

Our daughters from England came in turns and help sort out a lot of the stuff and the  job of throwing out the things they considered immaterial.

Further calamities hit our life as I injured my toe which then had to be amputated. Then I lost a couple more toes and then half my foot. But I was still mobile and could still drive and continued with the process of settling in our new home. 

Then the major catastrophe struck and I had to have my right leg amputated below the knee. This meant my mobility was now down to zero. I was in a wheelchair and although the rehabilitation centre (physiotherapists Maire and Soile) put me on the road to recovery but I was a cripple.

But I continued to carry on best I could. I helped stabilise Annikki and keep her happy. Her paranoia phase was over and she remained a happy individual with zero short term memory and a very selective long term memory which fitted her own narrative.

I used some of my own novel techniques and provided her constant love and affection, that she had shown me from the very first day we had known each other. I provided 100% attention to her. This has helped us both survive these years.

Many facts came our way, especially as the way as the majority of the Indian Community in Oulu decided we were morons and not useful to them any longer. 

That was not a great shock for both of us. 

As we had lived our life by 10 guiding principles for the 56 years together, we decided not to waste our time chasing shadows. 

We had our family, a few true friends and that was enough in our life.

Annikki enjoys the company of these few friends. She especially enjoys the company of children. She enjoys talking to her children and grandchildren scattered around the world and that is happiness. 

Recently, when a person from India, a complete stranger, asked for help look after his young son who who was coming to study in University in Finland, Annikki asked me to offer him a home till he got University accommodation. 

Despite her dementia, she still shows her humanity!

Throughout her life Annikki has been faithful to her God. She read the Bible every single night and visited her church whenever she could. She kept her Sabbath Day (her day of rest) faithfully. I know her Lord has looked after her at all times of hardship. And with her devotion and prayers she has prayed for her Lord to look after me, her children and grandchildren from all harm. And thus He has done.

He spared my life as He had a purpose as He wanted me to be there to serve His devoted handmaiden. I live today because He has given me a task in life, which makes me thankful to Him.

Although we are different faiths, I respect her beliefs just as she respects mine.

Today, Annikki, a voracious reader and writer, cannot read the Bible or even say a prayer.  

I found a YouTube channel which has a daily sermon from her church. When she goes to bed, she listens peacefully to the sermon. Then I put on some hymns and till she goes to sleep she lies there peacerfully enjoying the music. The peace of mind she has while I sit by her with my computer doing my work is her refuge. She trusts her Lord. 

I have infinite faith that her Lord will look after both us. 

Shashank and his wife an accomplished Indian dancer.

During the day I play for her the beautiful flute music gifted to us by our dear friend, Shashank Subramanayam, and that brings peace to her and me. (Sadly we cannot see him perform in Oulu as the organisers violate every norm that Annikki snd zi abide by. I had to explain this to Shashank directly so that he does not misunderstand our absence.) 

What more could we ask in life.

I know what lies ahead, having looked after Annikki's mother with her for 8 years. 

There is much pain I will have to suffer. 

Unlike her mother, Annikki is in perfect physical health because of her Biblical background. Although touching 80 next year, I know she will survive another decade and more without any problem. 

Our dear friends come from all over the world to see us and share their happiness with us. 

We are surrounded by a few people who love us dearly and that is enough reward for us in this life.  

Just last week my school Physics teacher, Bill Shiri, who was living in Toronto passed away at the age of 98. Annikki was visibly saddened by this as she has been close to all those who have shown her respect. 

Others do not matter in her life.

Rajen and me in Delhi.

I chat with my cousin, Mammen Mathew (Rajen), who runs our family newspaper empire, almost daily. Annikki waits to hear what he has to say. She knows that he cares for both of us as much as we care for him and his family. We share our joys and sorrows with him as he does with us, because we both live our lives by the same 10 Guiding Principles. 

As dementia progresses, we will get closer and closer to each other, each depending on the other. We trust in our Lord and Maker to take us on through life.

AI generated essay on Dementia:

“ Title: Understanding Dementia: A Comprehensive Exploration

Introduction:

Dementia is a progressive neurodegenerative disease characterized by a decline in cognitive functioning that impairs daily activities and affects a person's memory, thinking, behavior, and social abilities. With an aging global population, dementia has become a significant public health challenge. This essay seeks to provide a comprehensive exploration of dementia, including its causes, prevalence, symptoms, and available treatments, as well as the impact it has on individuals, their families, and society at large.

Causes and Risk Factors:

Dementia encompasses various conditions, the most common being Alzheimer's disease, vascular dementia, and Lewy body dementia. While the exact causes of these conditions are not fully understood, several risk factors have been identified, including age, genetics, family history, cardiovascular health, smoking, and certain lifestyle choices. Additionally, traumatic brain injury and long-term substance abuse can be contributing factors to the onset of dementia later in life.

Prevalence and Impact:

Dementia is a global health concern, impacting individuals of all backgrounds across the world. According to the World Health Organization (WHO), approximately 50 million people live with dementia worldwide, with nearly 10 million new cases reported each year. The prevalence of dementia increases with age, and as life expectancy rises, the number of people affected is expected to escalate. This poses significant challenges to healthcare systems, families, and societies as a whole.

Symptoms and Progression:

Dementia presents itself through a range of symptoms that progressively worsen over time. Initially, individuals may experience mild memory lapses, confusion, and difficulty finding words. As the disease advances, memory loss becomes more severe, affecting recent events as well as long-term memories. Individuals may struggle with problem-solving, decision-making, and general cognitive tasks. Changes in behavior, mood swings, and impaired communication skills are also common. In the later stages, individuals may require assistance with daily activities such as eating, dressing, and personal hygiene.

Impact on Individuals, Families, and Society:

The impact of dementia extends beyond the individual suffering from the condition. Family members often take on caregiving responsibilities, which can be emotionally and physically draining. Witnessing the progressive decline of a loved one's abilities and personality can lead to feelings of grief, frustration, and stress. Additionally, the financial burden associated with dementia, including medical expenses and specialized care, can be overwhelming for families.

On a broader scale, dementia imposes a significant economic burden on healthcare systems and society at large. The costs associated with healthcare, long-term care facilities, and lost productivity due to caregivers taking time off work create substantial strains on national economies. Furthermore, the social stigma and lack of awareness surrounding dementia often result in individuals with the condition facing discrimination and inadequate support.

Available Treatments and Interventions:

While there is currently no cure for dementia, several interventions can help individuals manage the symptoms and improve their quality of life. Pharmacological treatments, including cholinesterase inhibitors and memantine, may temporarily alleviate symptoms in some individuals. Non-pharmacological approaches such as cognitive stimulation therapy, physical exercise, and social engagement have shown promising results in slowing down cognitive decline and enhancing overall well-being. Additionally, providing a supportive environment, educating caregivers, and fostering community and societal inclusivity can greatly impact the lives of individuals with dementia.

Conclusion:

Dementia poses a significant challenge to individuals, families, and society. By understanding the causes, prevalence, symptoms, and available treatments for dementia, we can work towards destigmatizing the condition and providing appropriate support for affected individuals and their caregivers. Furthermore, continued research efforts and investments in dementia care and prevention strategies are crucial in addressing this global public health concern.”