In early 2020, South Africa went into lockdown. COVID 19 was spreading quickly, and it was decided that, in order to slow the spread and ensure that our hospitals were ready for the pandemic, we would go into a three week-long nationwide lockdown. Needless to say, the lockdown was very hard on everyone, and we were all relieved when the three weeks were over, and we began to be afforded small freedoms.
After the initial three weeks, our president announced that the country would still be in lockdown, but that stricter rules would apply. Finally, we were able to exercise, even if just for two hours in the morning each day.
I live with my boyfriend and his mother. Shortly after the three week-long full lockdown, my boyfriend’s grandmother lost her partner to a heart attack. This resulted in my boyfriend’s mother driving sixteen hours (after receiving police clearance to cross prince borders) to fetch her mother and bring her back to stay with us. Her stay was to be temporary, and it was the only solution at the time. Retirement homes were in full lockdown, travel was illegal, leaving the house was prohibited, and total social distance and isolation was applied to all contexts. We all knew that her stay would bring challenges, but we also knew that there were no other options.
Initially, we did not have many problems. We all understood the implications of bringing her into the home, Alzheimer’s brings many challenges. Characterised by memory loss and an inability to position oneself in space or time, my boyfriend’s grandmother (from here forward, she will be referred to as Ouma, a word in Afrikaans that means grandmother) did not understand where she was. Time after time, she asked us for a lift back to her house. In addition to travel being prohibited, we knew that she could not live by herself at that point in time. She had suffered a fall while living alone, and her condition meant that she posed a danger to herself. A month or so later, Ouma began to believe that the house was hers.
Anyone who has cohabitated with someone with Alzheimer’s will understand how tedious and tiring it can be to answer the same question time and time again. This becomes even more difficult when faced with questions about deeply emotional topics. For example, Ouma repeatedly asked my boyfriend about her partner, as she wandered around the house looking for him. Regardless of how often we reminded her of his death, she would forget within a few hours – or minutes – and the cycle of heart ache would continue. Every time we told her; it was as if she had only just received the news. It made me wonder how impossible it must be to cope with death, one of the most traumatic events an individual can encounter, if each day feels like the first day of grief.
Over time, Ouma began to realise that her memory was not reliable, and she fell into a deep depression. Extreme mood swings accompanied this, which meant that the living environment was very restrictive and there was a constant feeling of heaviness in the atmosphere.
Living with someone with Alzheimer’s is not easy. It feels like a constant toss-up between “I know it’s not your fault” and “Please don’t ask me the same question again, please don’t get angry at me”. The situation is truly emotionally draining, and sometimes it is very easy to forget that the person cannot help what is happening to them. When I started to get frustrated, I tried to imagine what it must feel like. Imagine waking up and some of the people you love are not alive anymore. Imagine realising that reality does not align with what you believe is true. Imagine living a life where you feel that everyone is lying to you, trying to deceive you…
At times, I found myself getting very angry. They say that the best way to deal with someone who has Alzheimer’s is to agree with everything they say. “Yes Ouma, this is your house”, “Yes Ouma, we can take you home in a few hours”, “Yes Ouma, the people are all sleeping.” While recommended, the challenge comes in when accusations and mood swings mix into a toxic cocktail of mischannelled rage.
I would like to believe that I handled the situation well for the first few months. While I felt frustrated all day every day, I managed to keep my anger under wraps for quite some time. Towards the end of her stay (about four and a half months into her living with us), the resentment began to build and the cracks in my smile began to form.
I found that the best way to avoid confrontation sometimes was to walk away. Just agree and walk away. However, this is a little bit difficult when confronted in your own living space. On one particular evening, I was in my bedroom listening to an audiobook and folding my laundry. These little moments became therapeutic to me, as I felt I was tucked away in my little safe space, away from the drama and tension.
Suddenly, Ouma was in my room. She hadn’t knocked (which is something that has always irritated me, I like my privacy and time alone) and asked when I was going to leave. Earlier in the day, she had, once again, accused me of eating her food, while I am fully independent and pay for everything myself. After a long and stressful day, this question really frustrated me. I thought to myself: “I live here. I pay my rent. This is my bedroom.” I told her that I lived there and that I could show her photos of me and my friends in my room if she wanted to see. She looked at me in an accusative way and said that I needed to leave because she had people coming to stay. Obviously and unfortunately, these people did not exist, and the statement really pushed me a bit too far. The thought of being patient and accepting didn’t even cross my mind, and I found myself saying, in a rather sharp manner, that it was not her house, that I wasn’t going to leave, and that she wasn’t going to have anyone to stay. Very quickly, this escalated to the point where we were screaming at each other, her calling me a cheeky pig and me repeatedly stating that I wasn’t going anywhere. The exchange ended with me slamming a door and screaming “Get out”.
That wasn’t even close to being my finest hour. I obviously regret allowing things to get to that point, but at that stage, I could barely contain my frustration. It’s very difficult staying in an environment where everything you say or do is questioned, where you’re too scared to even cook for fear of accusations, when you feel like you’re imposing when you have every right to be where you are. In that moment, I became the one with a short temper and poor impulse control.
I have learned a lot from the experiences we had while Ouma lived with us. While it was trying and I did eventually snap, I am proud of the fact that I was patient enough to last so long.
Sharing a living space with someone with Alzheimer’s can feel oppressive. The worst part is that they can’t really be held accountable for their actions, we would all behave in the same manner if everything we thought we knew was debated, where reality didn’t align with our perception, where the world has moved on from where our minds are situated in time.
The most important things to try to maintain when dealing with someone with Alzheimer’s are empathy, patience, and stability. These individuals repeat questions, forget where they are, and speak about things that are no longer true. When Ouma stayed with us, she was often concerned about her dog, which had passed away many years before. This meant that she would ask for us to take her home so that she could feed him, while in reality, this “home” she spoke of no longer was hers, and even if she still had it, her dog would no longer be there. The constant questions are emotionally draining, and so it is vital that one takes a deep breath and tries to imagine how hard it must be.
Further, it is important to maintain a consistent, stable environment. Although it is often difficult for people with Alzheimer’s to position themselves, changing their environment can cause even more emotional stability. Major changes are detrimental, and so any alterations should be done slowly and over time. These individuals need to acquaint themselves with the environment, and sharp changes can cause them to feel even more lost in time and space.
Finally, it is highly beneficial to keep them busy. Whether it be through card games, television, or small household tasks, sitting around and doing nothing leaves far too much room for boredom and the accompanying depression. Stagnation is unhealthy for even neurologically sound individuals, and so it is even more so for individuals with Alzheimer’s.
Two months later, Ouma is situated in a retirement village, with staff attending to all of her needs. Existence is lonely when one feels that no one understands, and thus social interaction with others who are going through the same things is highly beneficial. Ouma is safe. Ouma has stability. Ouma has companionship. Ouma has care. The situation can never be ideal, but last, Ouma has everything she needs to help her in her condition, and we are all very thankful.