Witnessing mum in her final stage of life

One of the ways that my mother asserts her independence is by pulling funny faces. I've found her apt to do this kind of thing at the drop of a hat. When we're sitting at the table in the dining room waiting for lunch to be served, for example, she'll cross her eyes and pucker up her mouth a bit in order to make a face that might have made me laugh when I was three years old, I imagine. I think that doing this kind of face is part of the coping mechanism old people use because there's not a lot they can really do, frankly, when it comes down to it. Making faces is one of the last methods they have of making their will felt in the world.

This image was taken from the video I made of mum during which she says she doesn't mind living in the nursing home. Because mum has dementia you can be sure that she will be telling the truth when she says things like this. I've learnt that from mum so when she said it I was reassured. There's no dissembling with her, it's what you see is what you get territory all up.

When we have lunch in the dining room we get to sit with other residents as well, including H who is a special friend of mum's. H has severe mobility problems, meaning that she can't walk around unaided and she has to be propelled everywhere by the staff. Even getting to the toilet unaided is impossible for her. She's always calling out for the nurses to come, and half the time when I walk past the door to her room she'll hear my footfalls on the carpet outside and call out "Nursey!" thinking it's someone who can help her do whatever it is she's got a mind to do at that particular time. Occasionally I will tell H that I'll go and find a staffer to come and see her, and she always thanks me fulsomely for that.

Mum often goes in to talk with H in her room because their rooms are located very close together. So when H comes into the dining room she asks the staffer pushing her chair to bring her to our table, so that she can sit with mum and eat lunch with her. H is a real character and I learn a lot from listening to the way she conducts herself in the conversation. There are other regulars at our table too, including N who likes to drink a glass of wine with lunch, and S who is 91 and still walks around although she uses a cane. H is 93.

When I think about how mum is getting on in the nursing home I remind myself that there are these other elderly women living there who I have got to know superficially over the months. Mum knows more about them than I ever will of course but then again she has the memory problem so she doesn't even remember their names most of the time. With mum however it's not the dementia that's going to do her in in the end but the myelodysplastic syndrome, the blood disease. It's because of this condition of hers that I haven't put much effort into finding a job even though I have approached a consultancy for help finding employment. I keep putting things off.

The thing is that if I work five days a week I won't be able to see mum that often. I mentioned this predicament to my cousin, who I often consult on matters regarding my mother because she - my cousin - works in the medical field and has a lot of experience caring for the elderly. My cousin says that if I can manage to stay out of work then I should because I won't know how long mum has got left.

Driving up to see mum I usually go on the motorway. I get on at the ramp near my house and take the Western Distributor to the Harbour Bridge, then I go up the Warringah Freeway to the Lane Cove Tunnel, after which I take the M2 to Beecroft Road, which is close to mum's nursing home. On the way in the car I listen to ABC Local Radio. After lunch in the afternoons it's always time for James Valentine except for weekends when they usually have talk shows featuring sport. I look forward to the radio being on to accompany my trips on the toll roads. These roads form part of the relatively familiar road infrastructure of Sydney that I have got to know over the years, unlike in Brisbane where I had basically one route memorised when I would drive down from the Coast to visit the gallery.

In Sydney I generally have more options, and when driving I can take the Victoria Road route for example in order to get to mum's nursing home. Going back to work for an income is also an option for me, unlike on the Coast where there was no work for the likes of me at all. Another option that I have is the ability to see friends and go out for a meal to have a chat over dumplings or noodles. Even the choice of restaurants is better here than it was on the Coast. I simply have more options in Sydney than I did before.

One thing I don't have any control over is when mum will die, however. So I stay at home and every two or three days I drive up to the nursing home to talk with her. I check up on her and see if everything is OK. I help her find her sunglasses. I take her to see the optometrist who visits the nursing home from time to time. I talk with the nurses and drive mum to her haematologist's appointments. I sit in my chair in her room while she dozes and silently go through the social media interfaces in my phone. I am considerate of her friends over lunch in the dining room. I pay attention to her. I am aware. I watch her progress through this stage of her life. I am a witness.