(This story was first published on 21 September 2021. It has been republished from The Quint's archives to mark World Alzheimer's Day.)
“I grew up holding his hands, walking by his side, his presence was always there around me. Now to reverse the role and hold on to his fragile yet strong hands, to give him the comfort and care he was looking for, was a big shift.”Puneet Singh, daughter of Col. MS Sethi
Col. MS Sethi was a stern but caring head of the house. An army man, his life throbbed with order and precision. His daughter-in-law, Preet Sethi remembers him as sharply groomed.
“We are Sardars and he would take pride in being well groomed, but I noticed something was amiss when my brave, strong, always well turned out daddy start to leave his beard untied.”Preet Sethi
Sethi was diagnosed with Alzheimer's disease in his mid-80s. Alzheimer’s is a degenerative brain disease and the most common form of dementia. According to the Mayo Clinic, it is a progressive disease that causes the brain cells to waste away, resulting in a “decline in thinking, behavioural and social skills.”
In many progressive degenerative diseases, functioning independently becomes difficult and so the role of the caregivers is absolutely essential. Luckily for Sethi, he had an army again. His wife had passed away, but he had his son, daughter, daughter-in-law, grandchildren and great-grandchildren on hand.
Caring for an Alzheimer's Patient: The Parent Becomes the Child
Alzheimer's is uniquely challenging because it’s difficult to see someone lose their memory and begin to forget you. It becomes a huge psychological burden
“When you keep asking...daddy main kaun hoon (who am I)...when your life becomes a whirlwind revolving around him for years and years...your mind is never free of the worry of that sudden call, the high blood pressure, the low sugar...whether he will agree to eat or it’ll be a battle with the food and medicines...because he can’t convey anything to you and maybe you are interpreting him all wrong.”Preet Sethi
She continues, “It becomes a role reversal, the parent becomes the child and the child the parent. That is hard to accept.”
Preet tells me how it started slowly, “When he goes for a walk and almost gets lost...when you see a little emptiness in his eyes.” The family would begin to lock the front door and hide the car keys. “We would be scared for ourselves when he drove.”
Slowly his condition deteriorated. His daughter Puneet says that they noticed an increase in mood swings. “He became angry, withdrawn - we thought it was due to moms passing, but it was something more.” After consulting a doctor, they were first hesitant to believe it was true. But as time passed, they accepted the Alzheimer's diagnosis. And the role of the caregivers became more pronounced.
“Once we accepted the Alzheimer's, we changed our attitude, we became more understanding and sensitive. I had left my job and was by his side non-stop. I regret taking so long to believe it," she adds.
“It’s difficult seeing your strong father like this,” she reiterates. But throughout, the Sethi family made sure he was never alone. “Someone would be sitting with him, and we focussed a lot on mental stimulation, we would play whatever games we could.”
Caring for Your Parents
It’s helpful when the caregiver is a loved one and can identify stressors, triggers and things that bring him joy and calm him down. “We were always with him, and I knew that music helped calm him down. He was very religious and I used to keep the radio next to him and play Paath when he was stressed. It helped,” says Preet.
A good caregiver can help improve the patients emotional health as well.
“We knew him and we knew he needed a lot of care and emotional support, beyond just help with mechanical tasks. So we ensured we would do things he liked. He started enjoying watching cooking shows, he was very observant when those were on and so we encouraged him to watch those and keep vigilant. We took him on daily walks, even towards the end, even if only a few steps to the verandah.”Preet Sethi
Alzheimer's is a tricky disease, and the patient is often stressed out and confused. “I used to wonder if he knew what was happening but couldn't communicate. What if he resented us treating him like a child?” She says thoughtfully. But in some instances, they had to find tricks and ways to make sure their father was fed, had his medicines and was well looked after.
“We had to force feed him like a child. We would use the same tricks you used on a kid, saying, ‘Look at the chidia (bird)!’”Preet Sethi
‘Our Lives Became a Whirlwind’: How To Help?
Be Understanding
The most important thing, says Puneet, is to be understanding and learn to notice the little things. “We had this routine, we would enter the house and salute him always since his army days. So during this time, if he would salute back properly, we would say, ‘Okay papa you are happy,’ and if his salute was dheela (weak), we would know something was amiss.”
Read Up on the Disease
“I realised there is no short cut, and I educated myself with all information regarding Alzheimer’s.” Being aware of the signs and symptoms can help families prepare and manage the disease.
Be Compassionate and Committed
Puneet says it is a full-time committed and compassionate role, and requires round-the-clock support and love. Preet adds that they made sure each family member would spend time with him, “We would wake him up and the grandkids would do their own thing with him, the kids would take care in other ways. It helped.” Being supported in times like these helps with the mental health of patients.
“We tried to give him a happy and comfortable surrounding to ensure a good quality of life with love and dignity.Puneet Singh
The disease does get difficult to manage, and it can be hard to recognise the person you knew. But it can be helpful to remind ourselves that the person we knew is still there, and the disease is making them act out, so we should not react with anger or frustration.
“All they need is a deeper understanding. they need eye contact and sensitivity. I would look at my dad’s eyes and I would understand what mood he was in and what needs to be done.”Puneet Singh
Know Their Medical History
How many of us know the medical history of our family members? “Dad at 85 was suffering from a host of comorbidities like CKD, diabetes, hypertension, etc. thus multitasking of medical front with self-knowledge was the need of the hour,” says Puneet.
Learn Their Triggers & How to Manage Them
“We took charge of all his triggers that caused confusion, stress, anxiety like handling money, driving car, taking decisions, meeting people etc.” They removed things that they found would annoy Sethi.
Create a Routine
“I made a time table and chart for him to plan his day, from waking, walks to baths and everything,” says Puneet.
Managing Your Own Mental Health as a Caregiver
Caregiving is a full-time, tedious and empathetic role. “It can get frustrating, and yes our lives did revolve around him. We had to cancel plans and we didn't travel or move outside for a while. We used to only go out to rush and buy medicines or groceries and come straight back. But we were lucky we had many supportive hands to help. And there was no question ever of us not caring for daddy,” says Preet.
Puneet concurs, “I ensured my plans and engagements revolve around my dad s routine and was fortunate to have a partner and siblings who supported and participated in this journey with me.”
As Puneet and Preet say, it’s essential to have support to help with the mechanical tasks and supervision, and also the emotional labour required. “We had each other to discuss the issues and the problems that came up,” says Preet.
If possible, try and alternate tasks so one caregiver is not too overwhelmed.
“You give so much of yourself, you have no energy for anything or anyone else. My advice to other caregivers would be to maintain a balance. Otherwise, it is very difficult to bounce back.”Puneet Singh
Still, they say they are eternally grateful they could help their ‘daddy’.
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