Learning what it’s like to live with Alzheimer's

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This letter is from a Queenslander living with Alzheimer’s disease, the most common form of dementia. Alzheimer’s is not a normal part of ageing. She shares her perspective to help others understand how Alzheimer’s disease currently affects her life. She connected with Queensland Brain Institute staff at a function and has supported our research ever since, saying that research is important to discover a pathway to better medication and, ultimately, a cure.

In my case, Alzheimer’s is a short-term memory issue, not a diminution of intelligence, intellect or industry. By short term, I mean the memory loss starts within a minute of the formation of the idea or thought or action, leaving me to go back to the room of origin to recover the thought. That worked well in the past, pre-Alzheimer’s, but it does not work now. I leave small notes on my computer keyboard, on a whiteboard near the phone, on the fridge, by my bed and by my TV chair. It is not an ideal way of keeping track of my once intact memory. Alzheimer’s is a dreadful disease, but to know I am not alone is powerful and lifts me out of the doldrums that I sometimes (but not often) find myself in.

 

"I can either let this dominate my life for the rest of my life, or I can use it as a lesson to make me a better person."

 

To paint a bit of a picture about my past. I was a self-employed accountant preparing over 1,000 tax returns and about 200 sets of financial figures for just over 700 clients, occasionally calling on a bookkeeper to help in the peak season. I travelled widely as a single person with the Australian Davis Cup Foundation to many overseas destinations to watch the three-day ties. A concurrent tour was usually offered of that country or nearby, and my memory is jogged by the hundreds of photos taken on each of these tours. I sold my practice about a year after I met my first and present husband on a Dinosaur Dig in Winton in September 2012. I was proposed to and accepted on the Cinque Terra in Italy in 2014.

The “family” joke, because he is a few years older than me, is, “she found one” – a dinosaur, that is! A bit unfair in hindsight. We have had many successful Australian trips, in his camper trailer initially and then in our A Van – what luxury! We have also travelled to the UK, Canada and Antarctica, all on guided tours.

To the present, having to write copious notes and, if I don’t, trying to recall what the last lost thought was or what I was supposed to be doing. My hand often has instructions or though or an appointment or the next task that I have written on it, as a reminder. I spend some time trying to decipher these notes once the hand has been washed a couple of times.

The other note-taking that is harder to decipher is when I write on a bedside notebook, in the dark, of a thought that may have woken me or come to me before I fell asleep.  In too few times, the thought returns by walking back to the point where I first thought of the idea or action. This frustrates me, no end.

I take a lot of photos, which I used to print out, but I have now realised that I don’t have the time to revisit the trips through the albums. However, I refer more often now to the various itineraries to jog my memory. I have so many articles from many sources, e.g., printed off the web, the Sunday paper, or newsletters and emails received, on a variety of interests, waiting to be filed, a very good “C” (Covid) job. The travel ones should be binned, I think. My days of travelling alone, albeit as a group member, are certainly numbered. Now I use my camera to take photos of waypoints if I am in an unfamiliar setting or going for a walk, for example.

A message I read, not about Alzheimer’s, but I felt it works for me, was: “You cope with it,” (isolation in the author’s case) “by breaking down the enormity of the situation into small pieces, and you work through those with physical skill, positivity and good problem solving.” A diagnosis is not the end of the world. It is only a change in our world. All lives have an end.

I did have a win recently. I bought a clock which shows the day of the week, the date and the time (not on a clock face) but white print on a black background. I love it! I am always forgetting what day it is, and the text on my watch is far too small to read the date and day these days. My husband was very understanding when I woke him up one day last week, in a panic, earlier than usual, to get ready for an outing, only to be reminded that it was in a couple of days.

For those of you that have direct contact with someone living with Alzheimer’s, I suggest you show the most patience you can. We don’t want to be like we are. We don’t enjoy being in this space, but there is no cure, and that is a problem. I worry, when in a deep mood, about how I will be when the disease progresses to the extent of my Father's in his later years. He died at 88, and quite frankly, I don’t want to get to this number in the present state of my disease, let alone a decline. I realise this is my lot. It is genetic (in my case), and I worry about my daughter’s future constantly.

With our help, in time, there will be further breakthroughs in research, and our lives will be in a better place.

Finally, here is a quote from a woman who lost her husband and then, nine years, later her 33-year-old son. I would like to adopt it for my situation. “I can either let this dominate my life for the rest of my life, or I can use it as a lesson to make me a better person.”

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Last updated:
6 September 2021