06/08/2025
Caregivers stories continued ….
Nihar
He looked after his father who suffered from dementia. His father was a government employee and a social person who was going on family trips, even challenging ones like Datta Parikrama and Narmada Parikrama.
The first signs he showed were of muscle stiffness which affected his mobility. He wasn’t able to sit or stand with ease. After consulting with two neurologists, his father was diagnosed with Parkinson’s disease. With six months of physiotherapy his mobility improved, but the prescribed medication possibly caused hallucinations. For instance, he imagined someone sitting next to him, or on top of the fan, or outside his window. With these new symptoms, the doctor then diagnosed him with dementia. Vijay mentioned some of the behavioural changes seen during his father’s illness
- watering the plants on the terrace multiple times in the day
-bathing multiple times in the day
- his father was always feeling hungry
- he repeatedly asked what should he do
- throwing clothes outside the window
- moving chairs around
- folding clothes constantly
- more than memory, the changes were behavioural.
The turning point came in December 2022, when his father woke up in the morning but was completely disoriented, barely keeping his eyes open and not wanting anyone to come close. He had to be hospitalized and that is around when he met Mangalatai for guidance. He accepted this journey as a challenging project .
Some of the methods he employed during his father’ care:
1. He tried to settle him down in a care center, but after 8-10 days, he was more agitated and then felt it best to bring him home. His wife was working but supported him in the journey and his son was in the 12th standard. His own mother was upset and felt helpless over the whole situation. His two sisters are in Mumbai and therefore, he was the primary caregiver. He employed caretakers in 2 shifts.
2. Initially they scolded him for his stressful behaviour, but to no avail and so he tried his best to not to let his father feel that his behaviour was disturbing or be bothered by it. He mentioned what he heard from a spiritual person once, ‘We should talk with the soul”. This person was no longer the father he knew.
3. He made changes in his room. Because his father could not distinguish between day and night, they would draw lighter curtains in the day and darker ones in the night. They laid out a carpet in his room to prevent falls. Train the caretakers with detailed instructions on handling him. He fitted CCTVs as well.
4. He always kept contact numbers of neurologists, neuropsychiatrists, physicians handy and was in constant communication with them over phone calls and video calls. He would be prepared with data like the patterns in his father’s behaviour over time and changes at different times in day. This helped adjust the medication dosage. He maintained a good rapport with the caretaker’s agency to ensure there was consistent service.
5. In Dec 2024, when his condition declined, he made another attempt to put him in the day care center and this time it showed good results.
6. He tried flower remedy but found it to be ineffective.
7. Cooked his favourite dishes or put on favourite TV shows
8. Working from home allowed him to pay close attention. In challenging times, he tried not getting upset and reminded himself of the role his father played in his upbringing and considered this phase as part of life.
In May 2025, his father had suddenly lost mobility and was bedridden. He was no longer recognizing the relatives. In the last 3 months, his appetite had reduced and there was drastic weight loss. He had given up on eating and would throw the dinner plates and also water. His nutritional requirements had to be met through saline. He needed an oxygen concentrator at home and eventually his saturation levels kept dropping. Since the doctor advised that even though they hospitalize his father, chances of the improving were bleak and so the family sought peace and content that their father was with them till he breathed his last. His father passed away in his sleep at the age of 84.
Nandini
Her mother was diagnosed with dementia at around 78 years of age. Her symptoms started out with confusion, loss of confidence in driving, episodes of suddenly blanking out. Her cousin who is a neurologist suggested these may be signs of dementia and started her mother on anti-depressants which helped to stabilize her mood better. But with time, cognitive decline was observed. Her mother however was aware enough to realize that she needed caretakers for herself, or she would like to be in a care centre to be looked after.
She regrets deciding against keeping her away from her in a care centre. Looking back she realizes that it would have been better for condition.
Her mother had a fall during the Covid lockdown. And it was hard to keep her calm in the hospital. She kept pulling at the tubes. She hired caretakers for her mother. And there was the other domestic help as well.
She loved music and it helped immensely. It was like an antidote for her. Both would sing songs together very often and her mother wanted to perform on stage. She liked talking to people. And would also talk to their dog as though it were her friend. She liked human touch. She would sleep next to her mother for a few hours and play songs. Inspite of being atheist, they would still pray together and light the lamp. However, her mother did not recognize her own daughter. To her she was the head of the staff that was at home and would thank them all for taking care of her. When her hair was being trimmed, she got very upset, but explaining the intent to her worked. When her father passed away, her mother thought that her grandfather had passed away and that the photograph they hung was of a saint.
She also tried flower remedy but it was not helpful
She was encouraged by loved ones to take a break so that she could focus on her wellbeing as well. Moving her mother to a geriatric ward was not an easy decision. While in geriatric care, her mother had an episode of vomiting blood and had a feeding tube inserted. She did not want a feeding tube for her 87-year-old mother. They were feeding her orally 7 times a day to take care of her caloric needs. She was bedridden and after an episode of UTI, she had fever and had lost speech. There was no eye opening. She was worried about how long this would go on. The uncertainty of this prolonged illness scared her. She reminded herself of how her mother migrated from Karachi, stayed in refugee camps and yet did well in the field of education and domestic life. Within a few days her mother had stopped eating. Eventually she had developed bedsores, her breathing was shallow and she passed away.
She said that compassion is not taught. Her mother’s care was an emotional in which, her emotional maturity has grown and she has been drawn towards spirituality in the last two years. Her children were a big support to her in this journey.
She also sought therapy which also deepened her relationship with her husband and other aspects of life. She has seen a lot of positive changes in herself during this phase of caregiving and continues to be part of the support group.
