DEMENTIA is more than just memory loss.

When we talk about a dementia diagnosis, the first thing that usually comes to mind is loss of memory and for the longest time I believed that was the most important aspect of it until dealing with someone with the disease first hand. It made me realize why in African villages, some people burn old people especially women claiming witchcraft when in actual fact, they are battling dementia. Not justifying the cruelty but understanding how a sudden change in someone is looked at with a suspicious eye. Dementia also affects the frontal lobe which is responsible for movement, personality, planning and decision making and the temporal lobe which is responsible for processing, hearing and emotions.

The other side to dementia involves changes in personality and mood swings which may shock the family. Because dementia is a neurocognitive disorder, it means that some neurons in the brain cells are destroyed by the disease which manifests in personality changes. For some people, there isn’t much change as I have read stories of how family members were warned about the issue but their loved ones remained kind and loving throughout unfortunately for some, my family included, it took turn for worst. My grandmother became someone we or rather I did not like most days but even in those moments, I was still someone she trusted and loved being around.

Changes in personality can be daunting especially to the caretakers who not only have to deal with the disease but also the emotional impact it has on them. Symptoms involve getting easily upset, apathy, perseverance behavior or compulsions, my grandmother would throw all her clothes on the ground and claim that she is packing them the whole day, physically acting out and aggression to name a few. Dealing with these symptoms is the most heartbreaking part because it can get difficult to reconcile with the fact that your loved one is behaving the way they are because of the disease and not because they are intentionally hurtful. Seeing the person you love change right before your eyes and knowing that there is nothing that can be done about it is even sadder.

Patience is prerequisite for caring for a dementia patient but it is easier said than done. Unless you are a robot with no emotions of which I hope that with all technological advances they manage to create a few that can better care of people with dementia:you are bound to get your feelings hurt. I can’t emphasize on forgiveness enough because dealing with a dementia patient will make you understand why Jesus spoke of turning the other cheek when one is slapped because you will still be angry and they will have forgotten everything about the fight you had. Sometimes we would be woken up by loud singing in the middle of the night from my grandmother’s singing loudly at around 2 AM to being on the receiving end of her aggression expressed through hitting you to her crying. God knows had she still been in the village at that time, she would have been a victim of a mob justice because people would have said that she is a witch singing at ungodly hours.

Unfortunately, there are no homes for people with dementia in Lesotho so the burden lies heavily on family members. This is why I hope that if God has favorites my mother has got to be the first in line because she took care of my grandmother and even during the times my grandmother was hurtful, she expressed kindness. Ofcourse I can’t credit her without mentioning Mme Mathabang, wherever she may be, I pray that she is having an amazing life because she stuck it out until the very end when many people would have long quit the job. My father for being a supportive husband and the only person who remained my grandmother’s favorite person when she hated everyone and made sure we all knew.

I saw my grandmother two weeks before she died and we had a great time, she wasn’t as aggressive but nonetheless when she died, as sad as I was, I won’t deny that I also felt a bit of relief. I know it’s a taboo to admit this as an African child but it was for the best because her condition was deteriorating and the weekend of her stable mood did not mean she was miraculously cured, my mother said the weekend before she died she was still the same as when I last saw her. Perhaps if she had had more stable mood throughout her illness it would have been easier but with her, it was difficult from the get go.

For a while I felt guilty for the times I lost my patience but I’m consoled by the fact that despite the times that we did not see eye to eye, I still remained someone she would always call out to for help or the times she would just call me and ask me to sit down with her. Other times it would be in silence and other times filled with laughter and stories of her youth even though some were mumbo jumbo. She loved love and marriage and sometimes I would disagree with her just for the fun of it because I think I’m a hopeless romantic like her but I could never admit it to her just for control. She was stubborn and so am I, so arguing for hours had always been our way of showing each other love. Won’t blame the stubbornness on dementia, I will let it catch a break for once 😂.

There is no cure for dementia but just medication to help manage it and also to help manage the mood disorders such as antidepressants and anti anxiety disorders to help with behavioral symptoms. With the Dementia Awareness Week, I’m sending out love to all people battling with the harrowing illness and strength to the carers of those suffering. What I hope this week brings is not only awareness to the disease but also funding in research studies to find how we can better help people with dementia. Emotional and social support for carers. Above all, I hope that in Africa, there may be homes meant for dementia patients with skilled professionals such as psychiatrist, psychologists and nurses to help the patients and family members during the period. Educating masses about the illness will also help people extend grace, kindness and forgiveness for those suffering. Investing in dementia health care is important because it is one of the leading causes of death in old age.