Losing life from the inside out

Hettie Gray, 89, from Bonteheuwel.

“The worst thing is to mourn a person who is still alive.” These were the words of a Bonteheuwel resident whose mother suffers from dementia.

She told the Athlone News their story while the spotlight is on mental health awareness during October.

According to Dementia SA, dementia is a term used to describe the symptoms that occur when the brain is affected by specific diseases and conditions including the Alzheimer’s disease and stroke. Dementia is a progressive disease, which means that the symptoms will gradually worsen depending on the individual.

The disease takes control of the victim in stages and eventually takes over completely but it also has a huge effect on the caregiver.

Hettie Gray, 89, started to display symptoms of dementia two years ago when she started to misplace items and had short-term memory liss.

Last year, when her granddaughter whom she looked after died at the age of 22, more symptoms started to show.

Shirley described her mother as a gentle, intelligent woman who loved to read and still does. She said her mother was a good-hearted person who always saw the best in people. She was God fearing and never missed a church service.

Ms Gray worked at the Ruyterwacht swimming pool as a tea lady during her late 40s and later, because of her passion for swimming, she started to coach children during the school holidays.

Shirley explained how the disease took hold of her mother.

“When my niece died, my mom broke down. They were joined by the hip. She started to pick up anything shiny like papers, packets, or bottle tops and hide it in her bra. We never knew what we were going to find in her bra. She was never a big eater but she ate well and then she started to eat all the time, forgetting that she had already eaten. Sometimes she would drink up to 10 cups of tea, forgetting that she already had a cup.”

Shirley said her mother was a social butterfly and still visits one friend in the road but that everyone was aware of her condition and often brought her back home if she wandered in the street.

During the stages of dementia, the victim might struggle to communicate normally, suffer from a loss of memory, and experience mood changes as parts of the brain which control emotion are affected by the disease. They may also feel sad, angry, and frightened about what is happening to them.

A month ago Ms Gray started to become aggressive and violent and according to Shirley she would often accuse her family members of trying to stab her or kill her.

Shirley said the disease has not only consumed her mother but has stripped her of all the wonderful traits that she had.

“It is a horrible disease that emotionally and mentally drains you as the caregiver. I have become very tired but I try not to lose myself to this illness. In the beginning I would try to reason with her and advise her but I have learnt not to argue with her but go with the flow because this is not her speaking, it is dementia.

“I will never put her in a old-aged home. My mother took care of me and now I will take of her. I will never give up on her, she needs to be in her own surroundings.”

At night, Shirley helps her mother to the bathroom and sleeps next to her as well because she is afraid of sleeping alone. She said that it is important for her mother’s muscles to remain active so she often walks in the street with her.

Shirley said that her worst thing is to mourn someone who is still alive while watching the disease consume them.

“Sometimes I just want to talk to my mother but she won’t understand what I am saying. You have to watch it steal your loved one and there is nothing you can do about it. The one thing you must try to do is not allow it to consume you as well, as it can take over your life because once the person is gone you will wonder what to do with all your time.

“I go to church on a Monday evening to pray and just socialise with people so that I can also get out. You are so busy caring for the person that you forget to eat and all of a sudden you feel dizzy or you stand and eat,” she said.

Shirley said that it is very difficult to speak about her mother’s condition to other people because not many people understand the disease.

Her advice to others who are caring for people with dementia: “Go for a walk, take a few minutes for yourself and do not feel guilty. Take care of yourself and trust them with other people. When you bath them do not put them under the shower or in a bath, they are scared of that. Place them on the toilet pot and bath them top first and then cover them and then bottom, they still want their privacy.”