Q&A: Swadesh Bala Jaitly, who lives with Alzheimer’s

What’s changed most since your diagnosis? 

When I was first diagnosed, I didn’t believe it. I thought I was just grieving for my late husband. I started to realise I was forgetting things and could no longer live alone in my house.

I had to move in with my daughter and her family, which was very hard for me as in my culture you shouldn’t move in with your daughter after she is married. I was worried about being a burden.

Now, I feel like I am living again, I go out with my family, enjoy playing games with my grandchildren and am much more active. 

What would you take to your desert island? 

I love to watch Indian films, prayers and songs on my TV, so I would feel lost without it. I would also take a little shrine with me so I could pray and feel safe. 

How has Alzheimer’s Society helped you? 

My family ordered booklets from Alzheimer’s Society to help me understand what was happening to me and to give me advice on things to help. The information also helped my family to care for me. 

What song or tune sums up your life so far? 

The Gayathri Mantra, which is a Hindu prayer song. I have always been very religious and when I am anxious or worried this helps me feel at peace and calms me down.

This has always helped me during the difficult times in my life. I wake up and listen to it straight away and fall asleep listening to it. I sing along.

What single thing would improve your quality of life? 

I found the pandemic hard, as I had to keep safe and not see too many people. I miss seeing people and would like everything to go back to normal.

I would also like to visit my brother and sister In India, as I worry I may not see them in real life again. I talk to them on the phone and can see them as I talk, but it is not the same. 

If you could go back in time, where would you go? 

I would go back to when I was a research scientist, as I loved doing experiments in the lab.

It was my ambition and dream to do research. I did my PhD at university in Calcutta (now Kolkata), India, and I was the only girl there. This was my happiest time and I was very proud of my work. 

What is your most treasured possession? 

A cushion with my husband’s face on it. This helps me sleep.

When I look at it I feel he is still with me, and when I see him smiling at me it comforts me. I love to cuddle it.