I often hear people joke about having Alzheimer’s when they forget something. “Must be the Alzheimer’s”… “Alzheimer’s lite” etc. I have even on occasion made such jokes, but lately I have been thinking about it.
When last did you hear someone joke about Cancer… Can you imagine someone saying, “oh, it must be the Cancer”? I don’t think so. I am not trying to say that we should be joking about Cancer. In fact what I am trying to say is exactly the opposite. But what about Alzheimer’s or dementia?
In South Africa, we joke about everything. It wasn’t 10 minutes after the Oscar Pistorius story broke that I received my first joke via sms. Joking is how we cope with all the crap that we are faced with on a daily basis and I am the first to admit to making inappropriate jokes. In fact, I am known for my inappropriate remarks and jokes. However, I am starting to realise that sometimes we need to be more sensitive.
Maybe I am super-sensitive about Alzheimer’s because I watched my gran, who was incidentally my bestie who raised me, slow diminish and become a shell, a remnant of the strong and fiercely independent woman I had known all my life. I watched as it ate at her memories, slowing squeezing the life out of her, stealing memories and moments.
We first noticed it when she started asking the same questions over and over again. At first we thought she was just a bit sick and it was just old age, but it didn’t stop there. My gran loved to walk. She would walk 5 kms into town and then all the way back loaded with shopping bags. It never phased her. It was the way she relaxed, the way she recharged. But one day it changed. She had been gone quite a long time, and we were just getting worried when in she walked, looking very upset. It turns out that halfway home, she couldn’t remember how to get home. She had had to ask a stranger (a black guy) where our street was and how to get there. Keep in mind that it was early 90’s so talking to strange black men on the street was not something that was done by respectable old white ladies.
Then she started to forget how to cook and then she started forgetting how to do up her buttons and to bath or brush her hair. And through all this, she was repeating herself a million times in a conversation, asking questions over and over and over. She started to forget who people were but managed to fake it by being quiet and polite and only speaking when spoken to. She had 3 kids, but when asked, she would say she had 4, and that I was her favourite. Needless to say that didn’t always go down so well with my mother!
Because my gran was a quiet introverted and polite person, people did not often notice that anything was wrong. But I did and it killed me. Sometimes it would work in my favour though. I could tell my mom that gran said I could do something and she would believe me because gran couldn’t remember. But one day my gran had a lucid day and when I pulled that stunt, she looked at me with tears in her eyes and said, “I didn’t say that! Why are you lying?” I never did that again and I still feel guilty about it.
My gran was very protective of me, and once I asked her if she was scared of dying and she said she was, because she didn’t want to leave me alone with my abusive mother. I was always her main concern, right up to the end.
I once asked her if she wanted to pray with me and what we should pray for. She started crying. “Pray that I can remember, that I don’t have to be so scared all the time. Pray that I can remember who I am!” was her answer. And so we prayed together a lot after that. And when I was alone I begged God to please help her, to heal her, to please not take away more of her.
One morning, after I had left school and moved out of the house, my mom phoned me to say that something was wrong with my gran. When I got to the house my gran was talking to people that were not there. She was blabbering constantly. If you knew my gran you would understand how strange that was. She hardly ever spoke. And so we took her to the doctor at the local state hospital. While my mom stood in line to draw her file, I sat with my gran while she asked me if I could see that little girl with the butterflies and I just sat and wept. When my gran noticed that I was crying, she got upset and started crying too. I told her I was okay, that it was just period pains. I tried to explain to her that what she was seeing wasn’t real and that it would all be okay. In my head I was screaming at God to please just intervene, to please give me back my gran.
When we finally saw the doctor, we discovered that my gran had a very bad bladder infection and that the pain probably had pushed her over the edge. Within 2 weeks of that incident, my gran got weaker and weaker. I would go each day to see her. I would feed her and bathe her and change her nappies. My mom wasn’t a very good caregiver so I took on the responsibility.
At first my gran was still chatty and strangely enough, she remembered me and who I was, while forgetting my mom, calling her “that irritating woman”, another thing she would never have said before.
I will never remember that Thursday morning. It was pouring with rain and when I answered my phone, my mom said, “Don’t get a fright but Granny is gone”. My immediate reaction was why didn’t I go to visit her the night before” I had felt in my heart that I needed to get to her but I was tired and didn’t feel like the 5 km walk in the dark. Immediate guilt flooded through me.
And so since I didn’t own a car back then, a friend dropped me off at the house. My mom was waiting for the undertaker. My gran’s bedroom door was open, and I glanced in at her lying there. Her head was turned slackly to one side and her jaw was lolling on her chest. I closed the door and never saw her again. I never went to view the body before the cremation. I wanted to remember her as she was in real life.
It poured with rain all day. I remember sitting at the funeral home, looking out the window at the rain, waiting for the thunder. But there was no thunder. There was just the relentless rain falling in sheets as I stared blankly out of the window and tried to control my emotions. In the end my mom was in too much of a state and I ended up organising everything, right down to the purplish roses and hymns. I think the worst part was when they took their stamp and stamped the word deceased over her ID photograph. That made it final. She wasn’t coming back. I was alone. The only comfort I had was that finally, she didn’t have to live in fear anymore. She was free!
Dementia and Alzheimer’s are not Cancer. But they kill too. They kill dignity, relationships, lives, families and hope. Suffering is suffering, whether it is physical or emotional.
There are millions of people out there who have similar stories. And so the next time someone jokes about dementia, take a moment and think of the millions of unacknowledged “human “barely being[s]” that are struggling to retain some form of dignity as they slowly lose the long and difficult battle to one of the most evil diseases I have ever met face to face.