“When I was a child, I recall how jovial and hardworking my mother was. She was the kind of woman who loved picnics, movies, and did not hesitate to join her kids in kicking a football! She had a positive outlook on life and constantly pushed us to work more and pursue bigger opportunities. However, at 72, some time after my dad passed away, she began experiencing hallucinations. She would repeatedly say the same thing while losing track of our chats. I had no idea what was happening. I merely assumed that it was due to her advancing age and missed the signs! Fortunately, my brother-in-law observed her during a family lunch, and suspected a case of Alzheimer’s, and advised us to consult a doctor. After multiple consultations, it was confirmed that she was indeed suffering from Alzheimer’s.
We immediately began treating her with prescribed medication, but by then she was already experiencing hallucinations and was unable to understand what she was going through. Thankfully, the medication helped…her hallucinations decreased and her behaviour calmed down significantly.
It was up to us as a family to step up and manage her condition. With barely any idea about Alzheimer’s, it was challenging for us, but I read a lot to understand how to deal with her illness. In addition, I started reaching out to other caregivers of Alzheimer’s patients as well as the Alzheimer’s Society of India. That helped me navigate the many pitfalls a caregiver has to deal with while caring for a patient.
Since Alzheimer’s disease has made maa totally dependent on me, even if I wear my shoes and grab my handbag, she feels insecure and I have to assure her that I am not abandoning her. While I’m her primary caregiver and she depends on me for almost everything, my family has always lent a helping hand whenever I’ve needed assistance. When my daughter sees that I’m exhausted, she goes and sits with her dadi and chats with her so I can get some time off. She knows we cannot leave maa alone, so she takes over my responsibilities temporarily and encourages me to go meet my friends and freshen up!
Some Alzheimer’s patients tend to get violent, and maa behaved like that too at some point, so I’d always try to keep her in a good mood. Anticipating her foul moods and stopping things from getting worse was something I learnt along the way. Playing along with what she says and answering her repetitive questions like it’s the most normal conversation we are having helps make her feel like all is well, because of course, she cannot remember that it isn’t. Most Alzheimer’s patients start fearing water and that creates problems at bath times. So, when I need to bathe her, I pretend to bathe her as well, so she doesn’t feel embarrassed. Making her feel that nothing is wrong with her helps a lot.
Caring for maa has gone on for almost eight years, along with managing my work, my household, and my kids, so I was looking for better ways to manage. I was looking for a facility where she could be engaged in the recommended cognitive activities when, thanks to a friend, last year I learned about Hope – Ek Asha day care centre for dementia patients. With the supervised activities they have for patients, I have seen a huge improvement in maa’s mental health–especially since she had gone into a state of depression during the lockdown.
Whenever our relatives come over and don’t know how to talk to maa, I start talking to her as usual and they follow suit. When they see me cracking jokes and being affectionate with her, they realise she connects, and then do the same! After all, we need to understand that just as we wouldn’t expect a person with a disability to get up from their wheelchair and walk, we cannot expect someone with a memory problem to make sense of their words or behaviour. Maa may have lost her memory, but she’s still the same person, so she needs to be treated with the same dignity and respect!
As maa is getting older, there are times when she does not recognise close family members, and I know someday she might forget me as well. Although that will be sad, I’m mentally prepared for the day when it will happen. Because she cannot remember most things, I feel that she doesn’t know what I do for her on a daily basis. But I’ll never forget something that happened recently! One day, when I was cleaning her feet, she surprised me by exclaiming, ‘Oh, you have to do all this for me!’ and sighed. Her reaction made me realise that, at some level, she knows what I’m doing for her… In that moment, I felt so touched and validated; and I can never forget that memory!”
Being India’s biggest storytelling platform, Humans of Bombay is all about bringing you extraordinary stories of ordinary people. This World Alzheimer’s Day, we bring this story to create awareness about how serious this illness is. We hope this story showed that Alzheimer’s sufferers need to be taken care of and dealt with patiently. Alzheimer’s patients may forget their loved ones because of the illness, but as caregivers, we must not forget to care for them. If you’d like to read more such stories, check out our book and dive into the diverse tales of a country with a billion beating hearts!