The sense of separation

Yesterday I decided to get away for the day and go into Brisbane by car, so I left home as soon I had taken my mother back to her place from the doctor's surgery - where we got her biopsy wound rebandaged, just in case - and drove down the highway. As I was driving along I felt a lump in my throat form and rest there like a memory of something valuable lost, some species thought of a fork in the road taken, never to be revisited.

This morning I felt the same thing as I went to my mother's apartment as I usually do - to have breakfast - as I was walking along the suburban street near my home. There was this weight inside me, a weight on my chest and in my throat, and a desire to cry.

Driving down the highway the weight inside me was somehow connected to the separation - even if only temporary - from my usual connections. I was leaving my mother alone in her home to go into the city for a few hours, to recharge my batteries. Nothing undue, nothing exceptional. Or so you would think. But the burden of caring for my mother has been matched recently with the additional burden of planning to leave our town and move to Sydney, and somehow this new burden has doubled the pain of separation I feel whenever I drive down the highway to the city. The pain of separation can even be felt just while walking out the front door on a weekday morning on routine business.

The pain of separation is permanent now. I am planning to move back to Sydney and also to place my mother in a nursing home, and this compound of burdens makes itself felt in even the most normal parts of my life. Even just walking down the street I can feel the burden pulling on my emotions, drawing me down into new regions of discomfort and anxiety. New worlds of feeling, new loci of pain and separation.

I am sure that this is the case, and that it is these new elements in the topography of my life that are causing the new stresses I can feel while driving or while walking down the street. I know it is them because I didn't feel these things so strongly before, and these new elements are of recent origin, belonging to the past three weeks or so of my life, to a part of my life when they were born in my mind as ideas, and began to develop into plans. I am still resolutely connected to my mother but the new reality means that I feel the tug of separation at all times. You can check out any time you like, but - as the old familiar song says - you can never leave. A busker was playing that song yesterday in South Bank while I was in Brisbane.

Knowing where you are

My mother has had problems with bruising in the absence of any physical impact and the GP took her off the blood thinners she was taking and also referred her to a haematologist - a blood specialist - in order to find out why mum's platelet count is so low. A low platelet count means the blood is liable not to clot, which is why the bruises were appearing with such frequency on her arms. The haematologist then ordered a biopsy to take a sample of bone marrow - the place where blood is manufactured in the body - and we had to drive to the surgery 40km north of where we live. It is a fairly arduous drive in an area that is difficult to navigate and that has a lot of roundabouts. In the past, mum has developed motion sickness in the car because of these road fixtures, but yesterday we were lucky and we arrived without having to stop.

After having a few blood samples taken - these had been ordered in addition to the bone marrow sample - they took mum away to do the main procedure and I went outside and found a bakery where I bought some food and a cup of white coffee. Mum was gone for a couple of hours; to do the procedure an anaesthetist administers a general anaesthetic, so most of the time she was away from the waiting room - where I sat chatting with people about the sudden rainshower, and watching a bad American drama on the TV - she was in fact just sleeping off the anaesthetic. Eventually the nurse brought her into the waiting room and found her a seat.

I sat next to her after a while and asked her how she felt. She found it difficult to answer the question, and replied by asking me one: "What am I doing here?" To answer my mother I explained about the low platelet count in her blood, the haematologist's order for a biopsy, and our trip north to the small regional centre where the surgery where we were sitting was located. She said nothing, but a few moments later she asked me: "Can you tell me what I am doing here?" I went through the reasons for our presence in the surgery again, explaining about the low platelet count, the haematologist's order for a biopsy, and the trip north.

Soon, the nurse came out to the waiting area and brought mum a cup of tea with three biscuits, which she happily consumed. Not long after she finished the tea she went to the toilet and then a nurse took her aside to run tests to establish whether she was fit to be discharged. Soon after, we were back in the car running through the roundabouts on the way back down south, with the heavy rain pattering against the windscreen and the wipers operating at normal speed to clear it.

When we got home it was still raining heavily. I took mum out of the car and we shared an umbrella as we negotiated our way back to her apartment, where she has no trouble remembering where she is.

Making lunch happen

I am responsible for the evening meals that my mother and I eat every day; her housekeeper cuts up fruit for breakfasts. Lunch? My mother makes it herself but as she gets older and her memory - and her awareness of the world around her - fades, it happens more often than not that the regular time for lunch is missed. Evenings I usually serve up dinner around 5.30pm, so I normally arrive at my mother's apartment at the same time each afternoon. So it is important to make sure that she eats lunch at around the same time every day; my mother says she prefers to eat lunch around 1pm. Often, however, with the vagaries of memory and awareness brought on by dementia it's quite likely that she might still be eating lunch at 2pm or 3pm. It all depends on whether she is hungry or not.

Today I went around to mum's place at around 12.30pm to make sure she started making her regular sandwiches - we had a lamb roast a few days ago so there are still the remnants of a leg of lamb in the fridge - at the appropriate time. Usually I call her, but last night mum tripped on her shoe - yes, I know it's hard to believe, but it's quite credible where you're talking about someone as liable to missteps as my mother - and fell against the kitchen bench, bruising her arm. I saw a subdued mother this morning when I went around to her place to eat my breakfast.

The thing about telephoning a person with Alzheimer's is that the second - the very SECOND - you put the phone down she has turned to occupy herself with other things, and likely as not she will completely forget the contents of the telephone call. It happens often. I call and explain the need for lunch to her and she agrees with alacrity. But when I call back an hour later she is still sitting in front of the TV. "There was a good program," she'll tell me. "Did you eat lunch?" "Yes, I think so." "Are you sure?" "Let me check," she says. (She always trims her sandwiches of their crusts, so there will be telltale crusts in the garbage bin if she has, in fact, made sandwiches.) "Oh, no ..." she tells me, slightly bemused. "I didn't." It is now 1.30pm and dinner looms. So I tell her to make sandwiches and then I call back 15 minutes later to check that it has been done.

In order to avoid such frustrating telephone conversations - and repeated calls - and because she tripped and fell last night, today I started out for her place at around 12.15pm despite the heat, to watch her make sandwiches. In fact, there is no more reliable method to ensure that this critical element of the day's routine is faithfully performed, than to be present at the time of its performance. Making sandwiches is important for elderly ladies. A meal anchors the otherwise elusive day that tends to meander on the breeze of time like a pair of flirting white butterflies drifting on the diurnal breeze. Making lunch happen is also an important part of my own day. For myself, I have no trouble remembering to warm up some stew to eat by myself at midday, but for my mother there are too many things in the world ready to distract her mind from this important task. I will try to make the lunchtime trip to her place on as many days as I can. For both our sakes.