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Submitted by PatientsEngage on 22 February 2015

Mrs Gowri shares her experience as a caregiver of her mother with Dementia  

I care for my mother, a soft natured but strong willed woman, who had worked for 35 years. Post retirement, a freak accident while gardening, which we now believe could have been caused by a mild stroke, reduced her mobility and slowly led to the degeneration of the brain cells. Normally very quiet and uncomplaining, she had begun to lose her alacrity. Without any of us being aware of the symptoms, like difficulty in using the TV remote and avoiding phone calls, her world had shrunk to her room. Forgetfulness and her inability to take care of even her basic needs prompted us to consult a physician who diagnosed her with age related dementia of advanced stage, which cannot be reversed but could be slowed down with medication and a few mental and physical exercises.

Then started the rapid downslide. It was a tough task to motivate her to do anything. Slowly she started needing prompts to bathe, dress up and eat. My mother is comfortable with only family members, and so paid assistance doesn’t go well with her. At times we have a good laugh at certain comical situations, like wheeling her from one room to another, as though that in itself is a big outing given her loss of memory. She is currently bed ridden needing to use diaper throughout the day and night. Her earlier non-stop delirious talks, which drove us crazy, have now become occasional outbursts.

Initially, it was a tough haul for me as caregiver. I constantly had to, and still have to, remind myself that a person suffering from dementia can’t help certain behaviour. It really needs time, effort, and patience to come to terms with that. There were moments when I was mad at her. Out of control situations, like her frequent mood swings, verbal abuse, etc., were the worst. During such situations I would ensure that she was physically safe, close the door behind me and come out. Nights were also a point of frustration as she turned nocturnally active. Initially I would wake up every two hours to check on her, but eventually learnt to secure her with diaper and comforter, so that I could catch up with some sleep. I now keep in mind that I should take proper care of myself, to care for her still better.

In the mean time, having a passion for art, I have gradually created an interesting world for myself within my home. I paint to my heart’s content and also teach interested people in the time I get. And the fact that I am able to be there for my mother, as well as give wings to my creative streak, gives me a sense of satisfaction and also a refreshed mind to start a challenging new day. Being a Vedanta student I constantly train my mind to think that:

“The one ultimate reality behind the universe, manifested as various gods and goddesses is the same reality that exists as the inner soul of all living beings.”

I must mention here of the Divine Grace I have received in the form of a very supportive family. Together we have resolved to ensure she has a comfortable and dignified life.

I also appreciate the efforts of Ms.Rama Murali of CARE³, in trying to start a support group for the caregivers, a pioneer effort in Chennai, for providing the necessary resources, organizing meets to educate them in every aspect, be it yoga for health or caregiving assistance, etc. I wish her and her team well.

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CARE³ says : We thank Mrs. Gowri for her open and honest story of caring for her mother. She highlighted the complex challenges for caring with someone for dementia, and also beautifully illustrated how prioritizing the caring for oneself can help both the caregiver and the person they are caring for.  

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