«Pinch me when I talk to you like a first-grader»

Several times a week, Sidona Gianella drives to her mother, who suffers from dementia, and accompanies her to medical appointments and makes arrangements with the service providers who help her to cope with her everyday life. Or she simply listens to her. "I never know what to expect, every day is different," says her daughter. A protocol.

As soon as my son is at school and I'm off work, I drive to my mum's house. If there's no doctor's or hairdresser's appointment, we can have a chat first. It's usually trivial things that we talk about. But I can sense what mood she's in. Sometimes my mum tells me the same thing two or three times and I have to try to give our conversation a structure.
I make us a coffee and try to bring up the points I want to discuss with her today. She blocks some topics at first. «Mum, a lady from the Red Cross will come to see you once a week so that you're not alone while I'm at work.» In such cases, I need three to four visits with her and have to feel my way round the critical issue again and again. «I heard and understood what you told me,» she says at some point.

«My mum has a rare form of dementia. Her condition can change from one minute to the next».

My mum has a rare form of dementia. Her condition can change from one minute to the next. «Pinch me in the arm when I'm talking to you like a first-grader,» I have therefore agreed with her. In these clear moments, I am the daughter who talks to her, comforts her, encourages her when she realises her state of health. I tell her that now, at 77, she simply has people who think for her. If she is in her own world, it is better if I switch to the role of carer. This distance is good for me. That way I can help her without suffering too much.

A farewell in instalments

There is nothing I can do about the increasing oblivion. It's a farewell in instalments. We spend most of our time entering her appointments in her diary. My mum has a large wall calendar, a desk calendar and a handbag agenda for this. The agendas help her to organise her time. I want her to keep this ability for as long as possible. She writes her appointments in pencil in all three and marks them with a highlighter pen. The memory training is in yellow, the visits from the Spitex staff in green.

«Sometimes it all gets too much. Then I drive to the top floor of a multi-storey car park and look up at the sky. Ten minutes just for me.»

We usually only visit one particular day of the week per visit. This can take up to five hours. She can often only stay focussed for twenty minutes at a time and when her concentration wanes, we go outside to look at flowers or check on her cat.
Sometimes she has a depressive phase in between. Then I try to comfort and distract her. At such times, she sometimes asks me if she has to pack her bags and move into a care home. Of course I want to spare her that. It's difficult to set boundaries. As soon as lunch is brought to her, I try to say goodbye. «What, you're leaving already?» she sometimes asks, even if we've been sitting together for hours. I can't be angry with her.

«I can't do anything about my mother's increasing forgetfulness. It's a temporary farewell.»

My 14-year-old son is waiting at home. I know that he wants more time with his mum, he's told me so. I realise how I neglect his needs - and often feel guilty about it. My mum, my son, my husband: someone always has to wait for me. But giving up my new job again? I don't want to. Working at the retirement home is an important balance for me and helps me to set boundaries with my mum. And it gives me the self-affirmation I need. Because I can no longer expect gratitude from my mum.
She is no longer able to do this due to her illness. As soon as my son has friends over in the afternoon, I take care of everything that's left to do around the house. And yet I always feel like I'm lagging behind my to-do list. Sometimes it all gets too much. Then I have to break out of my «fixed timetable» for a moment and drive somewhere. After shopping for a cup of coffee. Or I drive to the top floor of a multi-storey car park and look up at the sky. Ten minutes just for myself, take a deep breath, answer to no-one. Then I'm ready to go again.
Image: pexels

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