CARING FOR DEMENTIA PATIENTS

      

    My mother suffered with dementia for a long time. It took us few years to fully understand her condition and the disease. It was a daily struggle for all of us as we expected her to behave normally, which was impossible for her. I undertook a short capsule from NIMHANS (National Institute of Mental Health and Neuro Sciences), Bangalore (now Bengaluru) on dementia and read books and articles to understand the nature of disease. This changed my perspective and I realized that ignorance of the disease was the cause of our misery. The happenings which went beyond my understanding suddenly started making sense to me. Her conduct which looked so irritating, now, started looking natural, normal and in-fact pleasing and at times amusing. She was behaving exactly the way a dementia patient was expected to behave. The realization that we as care giver were to adapt to her requirement and not vice versa as we were trying to do till than, leading to frequent brawls and frustrations on either side. So, the first and most important step for care givers is to understand about dementia.

    Dementia is an umbrella term for cluster of brain disorders characterized by loss of brain function which is progressive and eventually becomes severe. It affects memory, thinking, behavior and emotion. Alzheimer's disease is the most common cause of dementia and accounts for 50-80% of all cases of dementia. It destroys brain cells and nerves disrupting the transmitters which carry messages in the brain, particularly those responsible for storing memories. It is a progressive condition where the person's ability to remember, understand, communicate, and reason gradually declines.

    The onset of dementia is gradual and in the early stages the disease is often overlooked as normal part of ageing. In our case it would have taken us at least 3 years to recognize the disease. Symptoms like forgetting words and common objects, difficulty in conversing, forgetting recent events, anger, confusion and wandering out was taken as normal part of ageing. These are all early symptoms of dementia. Other symptoms are losing interest in activities, depression, undecisive and suspecting others around you. This stage, probably which went unrecognized for us, was also the most difficult too. Here we the care giver believe that the patient is doing things on his own volition, which is not the case. This lead to sermons, accusations, counter accusations and blaming each other. As the disease progresses all the above symptoms accentuate and become more evident as well as restricting for the patient. They become more and more dependent and can not be left alone, can become lost, hallucinate and forgetting becomes more common. They need to be helped for personal hygiene. In the advanced stage they need constant support and supervision as they are unable to eat and drink without assistance, not able to recognize family members and familiar objects. They lose control over bladder and bowel movement and gets easily agitated. Depression, confusion and aggression is commonly seen at this stage. In the last stages they are unable to speak and are confined to bed with very little movement. In this stage they require total assistance. In the final stages they are not even able to swallow and gets into a comatose state.

    There is no simple test to make a diagnosis for dementia and it is very difficult to detect it in early stages. There is no medical treatment but non medical therapies like exercise, music, dance and group activities have been known to be effective in managing the patient.

     Caring is a big challenge, fortunately we had four hands to look after her. My two daughters put in lot effort sparing their time from their work and studies. We tried to establish a routine for her with exercise (walking) being the 'must do' item. A constant attempt was made to engage her in some simple and easy task like folding small clothes and sorting out vegetables to keep in fridge. It helps their self esteem. Dementia patients are scared of being alone. Always remember that they might not understand many things but they can feel and can easily sense your irritation, happiness etc. It is important that they are made to feel liked, appreciated and mentally comfortable. Clinging on to objects, losing things, hiding them and making accusations of violence and theft are fairly common in such patients. We need to be patient in such times. What they see as reality is different to our reality for they have no memories left and their brain constantly play tricks with them. There is no point in arguing with them as it is the disease which making the person act the way he is acting and they have no control on that. To understand their flight you can close your eyes and just visualize that you are in an alien land, you have no memories of your past and present, you do not know and understand anyone there, you have no clue how you landed up there and everything is strange. That is what they are going through every moment of their life. It is scary, so be empathetic.

        

    The following two articles were written when we were caring for her (in the year 2016-2017). The you tube video was made with our help by 'Samvedna Senior Care' whose services we took for about a year. The you tube link : Doll Therapy for Alzheimer patients (youtube.com)

DOLL THERAPY FOR DEMENTIA PATIENTS

Mataji (my octogenarian mother) was diagnosed with dementia, an irreversible and terminal brain disease, about 3 years back. She had been showing symptoms since at least last 5 years, but we failed to notice them due to our ignorance about the disease. Dr. Kubler Ross a Swiss psychiatrist worked extensively with terminally ill patients to propose the Five Stages of Grief ( Denial, Anger, Bargaining, Depression, Acceptance) through which a person facing death goes through. The five stages also apply to the near and dear ones of terminally ill patient. We too went through these stages though not necessarily in the same order. The arduous journey spread over half a decade tested the unity and resolve of the family to the limit. The roller coaster ride took us through negative emotions like guilt, frustration, helplessness, anger as also intermittent periods of hope and jubilation on seeing some positive outcome of our efforts. Of course we had support from my family, relatives and well wishers, but I and my wife remained the prime caretakers as she has been residing with us.

We have finally accepted the reality and are trying our best to make her remaining years enjoyable, happy and pain free. We make efforts to learn about the disease through books, internet and specialized organizations run by Government and NGOs. It was some time back when my daughter suggested doll therapy as she saw a video on the subject. The suggestion got lost in the daily struggle.  In the mean time mother was getting more and more dependent for her daily routine forcing us to replace Sompal, with a female attendant for obvious reasons. Sompal had been staying with us for last 4 years giving company to mother in our absence which was rare. Having already completed his MA in first division under our care he picked up a good job in Delhi and moved to a PG close to his office. During one of his fortnightly visits he got a doll for Mataji from his pay. Mother almost grabbed the doll and held it tightly against her bosom showering frenzied hugs and kisses. It appeared as if she had been united with her long lost baby.

The doll was a breath of fresh air in her life. She believes it to be real and cares for her like an overprotective mother. She talks to her, sings to her, rocks her, dresses her up and shows her to all with pride. There have been many positive changes in her. She has stopped wandering in the night. The bout of anger has reduced, is less excited and is easy to calm down. We easily distract her if she becomes adamant on her ‘mission home going’ by bringing in the doll factor. She uses her new found vocabulary to talk effortlessly to the doll. It appears that the doll has brought back happy memories of motherhood and made her feel useful and needed. It could have also given her a sense of purpose and meaning as also a new status of a care giver to her child.

    In the mean time we also came in touch with Samvedna Senior Care Centre which apart from running various activities for seniors also runs a program for dementia patients. We have taken their services and a trained professional visits our house regularly. The doll therapy and the efforts of Samvedna have changed our lives for betterment. The other day when Sompal visited Mataji I asked him as to how he decided to go for the doll. He took us by surprise saying that he had made some research about dementia patients online and found mention of doll therapy. He got the doll from Chandni Chowk for Rs. 3000. It has been almost two months since the arrival of Doll and it continues to enthrall my mother. (The article was written in 2017).

The following article was published in The Tribune 29 Feb 2016. 

The home-going

EVERY day is a home-going day for my octogenarian mother who is in an advanced stage of dementia. She gets up disoriented in the morning and enquires where she is.

Biren Yadav

    EVERY day is a home-going day for my octogenarian mother who is in an advanced stage of dementia. She gets up disoriented in the morning and enquires where she is. Thereafter, she starts to pack her things and heads for the door to go to her house, to her children. As the day progresses, she becomes more adamant and insists to be taken home. She cannot understand that she is chasing a 50-year-old mirage. She has lost most of her cognitive abilities since the onset of the disease three years ago. At times, she reverts to her toddler days and searches for her mother. Frequently she confuses me for someone else and I become her nephew, brother or grandson, and my wife turns into her bhabhi, jethani or chachi. One ability she laments losing the most is her literary skill which is restricted to the five Hindi alphabet of her name.

My mother grew up in a village in times when education for girls was unheard of. She laboured in the fields and the house and continued to face the same drudgery after her marriage, till my father could support his four children aged six to 14, in the city. Just as we joined him, he was transferred to a non-family station. There was thus this inescapable necessity to do bank transactions for which she was taught to write her name. This was her solitary achievement in the literary field which she flaunted to her peers back in the village. 

She was talking to my daughter one day, recollecting how she could once sign a cheque and take out money from the bank. The loss of this ability was therefore the most distressing for her. Surprisingly, though, her ability to monitor and dictate my wife remains unaffected by her medical condition. She is still able to strike terror in her by a mere look. Any permission to go out is frowned upon, conceded only after open display of disappointment over her uncovered head and hands sans bangles; that she is in western attire for the occasion is immaterial to her. On the other hand, her maternal instincts towards me have multiplied and she dotes on me as if I am a small kid. This open bias, along with her relentless ‘mission home going’, at times, becomes a little too much for my wife. On one such occasion she exploded: “How come she is confused about everything except that I being a bahu need to be snubbed and you being a son need to be pampered? She refers to me as chachi, jethani and thinks I am elder to her. It is embarrassing, especially in front of neighbours.” I tried to explain: “Dementia is a brain degenerative disease where one loses cognitive function marked by memory problems and confused thinking. At times, she mistakes me too for someone else.” But she had more complaints. “Have you noticed the persons she associates with us? You are always someone very young, like her younger brother, nephew and grandson while I am someone elder to her. She had loving relations with those she associates with you, but I am the relatives with whom she never saw eye to eye.” 

I kept quiet. It was true, but I respect my wife for shouldering this onerous responsibility, notwithstanding the occasional saas bahu ki nok-jhok.