Ekta Hattangady was 15 years old when her mother, then 45, was diagnosed with Alzheimer’s. Over the next 4 years, till her mother passed away, Ekta juggled the role of caregiver and student, facing the unusual situation to the best she could. Now much committed to the cause of supporting caregivers, she shares her experiences and perspective below. [note]
Your mother suffered early-onset dementia. Often, when old people show dementia symptoms, it is attributed to old age. What sort of behaviors did your mother show which led to the family consulting a doctor for a diagnosis?
Well, the above statement said she was diagnosed at 45, but she was demonstrating “peculiar” symptoms for at least 2-3 years before. When I was 13, I remember she gave me a huge sum of money and asked me to manage the household expenses. In hindsight, this tells me that she was aware of her difficulties. Among other things, she’d forget her keys, to switch off the geyser, put off the gas, have no recollection of having eaten, lack of inclination towards company, etc. The GP said it was probably related to her menopause.
But the symptoms grew worse. She had been teaching at the pre-primary of a popular school and they said that she seemed quite lost. She wouldn’t respond to greetings from colleagues, run out of the classroom wondering where she was, and just not be able to complete her sentences.
Finally, we took her to a psychiatrist, supposedly the head of the Indian Psychiatric Association, and he diagnosed her with Schizophrenia. This is the worst thing that has ever happened to my mom or to me! She had an adverse reaction, became violent and it was impossible to deal with her. I still have a mark just below my shoulder, she had bitten me there.
We finally took her to Dr. Wadia in Mumbai, had an MRI at Leelavati Hospital and he said it was EOAD. Some simple cognitive tests – like asking her who the current prime minister was (she said Deve…Deve…couldn’t complete the word Devegowda) and drawing a clock (saw her number going out of the circle) – helped to understand her problem. The diagnosis came not as a relief, but as a terrible blow. I had lost my mother even though she was alive.
Did your mother register the impact of the diagnosis? In what way did the doctors explain the disease, or prepare your mother, you, and the rest of the family for what to expect?
Like I mentioned before, I think mom knew she was sick, just didn’t know what it was. She didn’t register what the diagnosis meant and she asked if she had “menin..menin…” – she meant “Meningitis”.
The doctors only explained how the disease would progress. They themselves had probably hadn’t dealt with someone who’d got it so young, so it was hard for them to help us prepare for the worst. Nobody thought that we might need help…me and my sister…
You were very young, just in your teens, and awareness of Alzheimer’s was low in those days. What was your understanding of the impact of the disease? What were you expecting? Can you share your emotional response to the situation?
This was before the advent of the internet, our information was limited. However, our GP helped us get info from a foundation in the US, I think it was run by Nancy Regan and I did read all of it. My understanding of the disease was perfect, I knew what would happen, but beyond that, I cannot describe anything else. I did what I had to. I guess some days I felt burdened, I felt depressed, lonely, misunderstood…angry…yea…sure…But I felt an innate sense of guilt, because even before the diagnosis came, I knew what it was…and when it came, I felt my mother got AD because I thought she had it.
I carried the weight around for years. Made wrong choices, dealt with it in a completely unsuitable way, but well, there wasn’t anybody around to think that I needed any sort of support or help!
Can you share some incidents (both happy and unhappy) about how your peer group, relatives, and neighbors responded to your mother’s condition and your new role?
Nope, no support from family, especially extended family. I took it with a pinch of salt, but I guess I am unforgiving. I do not keep in touch or even qualify them with cordial greetings when I see them, even now. At best, I nod and smile. I accept their decision to not help or understand, and they need to accept that I don’t care about them now.
My friends’ families were much better. I went through my class XII and college days only because of my then best friend’s family…I used to stay with them, and her mom made sure I was okay…ate on time…studied…slept…everything. She took care of me like her third daughter 🙂 and I am indebted to her.
My other best friend was in charge of providing the much needed respite of having to think about mom. She was my complete fun quotient. We hung out, did regular teenage girlie things. And I remember those days with fondness and gratitude now.
As a caregiver, what sort of care did you find particularly difficult to give?
Giving care was never a problem, but yea, being around her all the time, I felt irritated. After the so-called active stage of wandering and stuff, caring for her became easy. We just had to feed her and change her and make her sleep. But she needed constant attention. We had a nurse, but I guess my family expected my sister and me to be around. She gave up her studies to care for her! And when she got married, the responsibility fell unto me. I resented that I couldn’t go out and stuff…but I did it anyway. I did go out at nights, requesting our day nurse to stay over, etc. She was really nice. And I think the last two years were the easiest.
Care was never the problem. It was the hurt, what I was going through…my loss of my mom which was the hardest. Even as I write this, I feel my tears well up. I miss my mother greatly. I don’t have any recollections of her as a healthy person anymore and it really hurts. I don’t want to remember her that way.
Were there any difficult decisions that needed to be made? Can you share some examples?
For my sister yes…she had to decide whether she could continue to go to college. My mom was in the wandering phase then and there used to be a lot of tension at home. My grandfather yelled at my sister and said it was not their duty to stop her from leaving the house just because we were at school. That was that, my sister announced at the dinner table that night, that she was dropping out, my father didn’t even react to that.
I was much younger…by the time I was the primary caregiver, she was mostly bedridden, definitely not wandering, etc. So no, I didn’t have to do anything of that kind.
Can you share any fulfilling moments you experienced in those days despite all the problems you were facing?
Ha ha, no…no fulfilling moments. It was my hardwork that saw me get good grades in the class XII exams, and my friend’s family that took care of me. When my mom could still speak, we’d ask her, “Who’s your favourite person in the world?” and she’d say my name….Yea, I remember those moments with love. My mom and I were close. I look like her…it’s, I guess, moving in a way.
Looking back, combining your professional knowledge now with your raw experience as a teenager, can you share some thoughts with us? What type of counseling and practical advice would you give for families of loved ones diagnosed with early-onset dementia?
You have to decide what you do with your life. Don’t put your life on hold. If you can afford help, hire it. Do not feel bad about it. Always share your burden with someone else. Pray lots. It gives strength.
If I am called on for help today, I mostly share my feelings and negative emotions from that time. Most people just feel relieved that they’re not alone in hating their sick loved one or the other members of their family. It’s natural! Alzheimer’s affects the entire family!
Have a support system of people who understand. If it is not your friends and family, seek people who have been caregivers, they’re likely to be more empathetic, supportive and give correct tips.
I am going to sound hard. There’s nothing anyone can do for you or your loved one. N.O.T.H.I.N.G. unless you let them in. So let them in…
Based on what you know, what sort of support systems are available for such families now? What is missing?
I am not qualified to answer this question. But my guess would be networks with empathetic doctors and social workers that can work with families are missing. But honestly, I am not sure I would have sought help even if I knew it existed (it didn’t then). There has to be a way to get the help to the people…when it’s at your doorstep, you’re so desperate, you will try anything. But if it’s away, and you have to attempt to make contact, it is more likely you won’t.
Any other comments/ advice?
My parting advice would be just let people in…share your thoughts more…and you will find you can touch the lives of others like you. There is no better way to heal, than to help someone else heal.
Thank you, Ekta!
P S: Message from Ekta: Do have a look at some related blog entries by Ekta: My Mum was Just like Iris Murdoch Opens in new window and My Caregiver’s Song Opens in new window.
[This is part of the caregiver interviews on this site. View the list of all caregiver interviews]
Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.