Caring through chaos

Within two years post-diagnosis, the changes in Mum became more noticeable and challenging, continuing to this day. She experiences daily physical and verbal outbursts at irregular and unpredictable intervals, both in timing and severity.

Mum will bang on household objects, slam cupboard and fridge doors, and hit the windows, damaging the seals. Entering and exiting doors often results in multiple bruises from her lashing about, with damage also inflicted on the paintwork and the doors themselves. She will stamp around the house, scream, and shout at any hour, including at night, which led to an incident where the police were called by a concerned onlooker. She will also hurl abuse at me for no apparent reason, telling me how much she hates me and how she wants to k1ll me. I was unprepared for such instances to become regular, transforming our once quiet and relaxed household into a chaotic and unpredictable environment—a stark contrast to the life I was used to.

Talks of su1c1de and harming me became more frequent, and aggression towards family members increased. I had never heard Mum speak with such hatred, trying to cause disturbances in any situation. This unpredictability is constant; we can be quietly watching TV, and she will suddenly become paranoid, start shouting, slamming things, and storm out of the house. This reminded me of a conversation we had early in her diagnosis, where she expressed feeling the need for constant attention, but knew it wasn't right.

When unpredictable outbursts occur, they are often unmanaged, requiring supervision from a separate room for her to self-soothe and calm down, limiting distractions and preventing overstimulation. This can last for hours, which is exhausting.

A specialist nurse was contacted for a second opinion to assess whether Mum's Alzheimer's medication was becoming ineffective. This wasn't the case, and we were advised to continue, with only anti-anxiety medication suggested for calming her. I rejected this due to the risk of further cognitive decline and falls. Many might say it was only delaying the inevitable, but in my eyes, Mum still has some quality of life, and I want her to maintain it for as long as nature allows.

Severe aggression occurs towards me during her bathing times, with physical and verbal outbursts, shouting, scratching, grabbing my clothes, splashing water, and attempting to stand up in the bath to get out, often slipping and risking falls. I can't leave the room for safety reasons. Undressing her often results in kicks and punches to any part of my body she can reach, necessitating learning how to perform such a simple task safely for both her and me. As carers, we must be considered in every aspect.

One-on-one care is always needed, as she will wander if left unattended, becoming a danger to herself and others during these times. We live near a busy road within a five-minute walk, and she would walk into traffic, showing aggression if confronted.

Su1c1dal thoughts tempt her to harm herself, expressing no care for her well-being and wanting to d1e, along with paranoid thoughts of others wishing her harm. Severe fight-or-flight issues arise, with her leaving the house without warning, requiring constant supervision.

Mum cannot participate in group care; she won't engage in group activities and becomes disruptive without full attention, quickly becoming overwhelmed.

Weather poses a challenge, especially rain and snow. Mum screams endlessly if she can't go for her morning walk and maintain her routine. While water is only skin deep, factors like slippery road surfaces, puddles hiding holes or uneven surfaces, and wet shoes create risks. Wet clothes lead to battles to change into dry ones, leaving little clothing left. Repeated tumble drying starts the cycle again.

There's only so much screaming one can tolerate, and further damage to our home proves too costly to repair. She hates the sound of heavy rain hitting the windows, so I constantly have to find ways to drown out the noise.

I always hoped a short walk together would suffice, holding the umbrella, as Mum will set it down or walk with it by her side. Occasionally, this works, but usually, it doesn't, triggering her need to repeat walks over and over. Her mind can't rest like ours, and she finds no satisfaction in resting or relaxing indoors when the weather limits activities.

Mum is no longer interested in tidying up or pottering around her house. When weather prevents outings, no distractions work. Thunder and lightning add more challenges, requiring me to close the curtains, increase the TV volume, and manage anxiety outbursts. I let her self-soothe, as sometimes intervening can make things worse, but I ensure she is safe at all times, hoping she calms down. An earpod with some music helps me drown out some of the noise, as the sound echoes through the house, and she follows me from room to room when I try to seek some quiet.