Alzheimer’s and Down Syndrome: ‘We Were There for Each Other’

(21 March is World Down Syndrome Day, and in light of it, FIT is republishing this story.)

Alzheimer’s is difficult to understand on its own, and the movies portray the disease in a very conventional manner. The illness isn’t only about forgetting or memory. The patient undergoes a rapid transformation (biologically and psychologically), and their body cannot cope with the change.

Garima Garg (named changed) had further complications as she also had Down’s Syndrome. It took time for the family to realise that the patient might be suffering from Alzheimer’s, when the behaviour patterns of the patient had already been oscillating due to Down’s Syndrome.

It all started during the Diwali festival. Crackers are loud and obnoxious, and Garima was sensitive to such sounds. This is when we saw a change. After hearing the crackers, she had a fit and had no memory of the same after. We took her to the hospital, where she was very well-behaved. On the way home, she suddenly seemed to have no memory of her immediate family. She thought she was being kidnapped.

Alzheimer’s has stages. Her mental age was 3 when physically, she was about 45. She always had difficulties when it came to pronunciation and recollection. As the disease progressed, she started imagining people. She initially made friends with these fictional characters and later started fighting with them. This was like any other relationship, except for the fact that the people whom she talked to were only a part of her imagination.

As her family, we tried to make her understand that these things didn’t exist, but soon, this dialogue became a part of her routine. She would see me and immediately recall our conversation regarding this. She would recite the lines that I said, while still not believing them. She just wanted to make me happy.

Things took a turn for the worse when she started attacking herself under the belief that she was being attacked by these ‘friends.’ Our neighbours and some others were amused by her and never took her seriously. Since there is no cure for the disease, doctors prescribed everything that they could and simply hoped for the best.

She gained weight and was also diagnosed with an obsessive-compulsive disorder OCD. Apart from the conventional OCD-induced washing of hands, Garima also made sure that everything happened as per routine. She had the same fights with the people living in her mind. She repeated the same things.

Many told my family to give her away. But how could we? While she was suffering from Alzheimer’s, she had an excuse to forget our identities. We were her family. We never forgot that.

'We Were There for Each Other' 

As caregivers, there is a lot of emotional and psychological stress involved. Garima was never violent. She was the most patient and understanding person when it came to understanding her family. We adapted according to her. We made sure that she was never left out. Most importantly, we were there for each other.

Most of the Down’s Syndrome patients end up suffering from Alzheimer’s. However, they barely ever forget people. Garima started to unknowingly forget her own habits — but she was still Garima.

I have spent hours playing games and colouring with her. She loved dancing and would start jumping every time she saw me hold my guitar. Her sense of hearing had started fading away.

She had reached the last stage of Alzheimer’s in January, 2020. As her family, the news was too much for us to take. Nevertheless, we were strong for her. She used to cry with us every time we cried (while not understanding why we were crying). We played more games with her. We tried teaching her more.

She started getting chills in the month of April. In 2 days, she was gone. As her caregivers, we try our best to destigmatise Down’s Syndrome and Alzheimer’s.

We were her caregivers when she was alive, and we won’t stop being her caregivers even after her death.

(Aditi Subramanian was not Garima's primary caregiver, but part of the group of people who cared for her. Aditi send us her story as part of our Caregiver's Special on World Alzheimer's Day.)