Living with Dementia
A carer’s story... living with Yvonne
Ten years ago Yvonne began to do inexplicable things: leaving her upper denture in odd places; beginning, but not finishing tasks; mislaying items of jewellery; erupting into unexplained irrational outbursts. In those days, I frequently became angry, as I was accused of hiding her lost items. But as these events increased, I realised something was amiss.
Over the last years, I have adopted another tack, especially now that Yvonne has been diagnosed with Alzheimer’s disease. Anger begets anger; therefore remain calm; talk it out quietly; show Yvonne I still care. A kiss and a cuddle work wonders.
Although Yvonne sometimes becomes lost, I refuse to confine her to home, and I give her shopping lists. She loves to shop. Mostly she returns safely – sometimes with most of the required items. I have learnt to live with the tenterhooks each time she goes out alone, or when I leave her alone to take Dennis (a friend) swimming, attend sessions with my two U3A choirs, etc. In other words, I try to keep our lives as ‘normal’ as possible.
This practice includes various holidays. The most adventurous of these has been celebrating our 20th anniversary with 20 days in Vienna. True, I had to be ‘on guard’ at all times during our excursions – trips to the toilet became dangerous undertakings but we were able to experience an enjoyable, if exhausting, holiday. Singapore is planned for 2006.
Despite being a terrible cook, I wash and clean, iron and dust with the best of them, control the household accounts and so keep our home running. From the outside we appear to be a ‘normal’ couple. I intend to savour the ups and dismiss the downs for as long as is possible. There have been far more ups than downs. There should be enough ‘brownie points’ stored for me to continue.
Maybe, a major in philosophy and a teaching career of 40+ years, at all levels, have given me the patience and constitution to appear laid back through all this – mostly.
Remember fellow carers, during the next outburst, it is the ailment speaking not your loved one!
Bill & Yvonne
This story was first published as a Living with Memory Loss supplement in the Alzheimer’s Australia Vic newsletter, Living with Dementia, March 2006.
A patient’s story... swimming through treacle
Margaret Parnham’s personal story gives us a truthful insight into the ways Margaret and her husband Alan have chosen to deal with Alzheimer’s.
Extracts from Margaret’s story...
I don’t recall when the symptoms began. They just crept up on me like a slow, damp fog. Perhaps it was a couple of years. I was working at the time as a rehabilitation professional, having originally trained as an Occupational Therapist. My job involved a lot of driving, mostly to workplaces around the suburbs, and occasionally to country areas. Many of the workplaces I visited on several occasions, as there may have been more than one worker who needed to be assessed. During this time I had of course become quite familiar with the routes to these workplaces, and I experienced a slight stab of alarm the first time I realised that I was lost. This was to be repeated many times on other occasions.
I think the first symptom was losing my balance. I never fell, but frequently stumbled. I think it was also around this time that I noticed that my night vision was deteriorating. On occasion, it was necessary to visit a workplace at night, in order that I could assess a particular process, which could only be done at that time. It became more and more difficult to drive on those occasions, as the road ahead appeared distorted and I could not see properly. I usually arrived home quite shaken and wondering whether I would survive the next time.
Eventually, whilst driving home one night in heavy traffic in the rain, I realised I had no idea of which side of the road that I was on. At this point I panicked, and frantically pulled over. My car was parked outside a 24 hour supermarket all night, to be collected next morning in daylight. This incident finally brought me to the realisation that as I could no longer drive safely, I would have to resign from my job.
I heard a saying once, something along the lines of ‘when something is taken away, something will be given back. This proved to be true in my case – thank goodness! When I was working, I would joke with my business partner that I was waiting for my ‘Ideal man’ – this meant that he would need to be at least a gardener and a cook. To my amazement, shortly afterwards, a man appeared at my front gate whilst walking his dogs (my property is at a dead end) – and we got talking. It turned out he had worked as a gardener for several years, and enjoyed cooking! The outcome of this encounter was that we married that same year!
People have said to me: ‘What is it like to have Alzheimer’s?’ To me it is like swimming through treacle – almost everything is difficult. I am aware that I am becoming slower at doing things – even common daily tasks such as making the bed or making a cup of coffee. I have to check everything I do in case I have forgotten anything. I also seem to have a constant stream of adrenalin running through my veins, which makes me a bit ‘jittery’.
I have always thought that I could see colours clearly, but recently I have found that colours appear to be dulled, and I am viewing things as if it were dusk. This disappoints me, as I love watching the wild birds take turns on the feeding tray. My vision also appears to be drawing in, with the result that I miss seeing things, which can, in fact, be right in front of me. I think that the visual symptoms are perhaps one of the most frustrating, as they affect my functioning in many ways. For instance, Alan and I walked into town this morning; this takes approximately half an hour. In my case (and perhaps in others with the disease) I have lost depth perception. This is O.K. most of the time, as I have learned to be aware of steps, escalators, etc., and always hang onto the handrails or Alan’s hand in these situations. However, lately I have become aware that even flat surfaces can catch me unawares. On our walk this morning, I noticed that there were a number of metal rings set ‘flush’ with the pathway. To my eyes, these rings ‘rose up’ towards me, giving me the impression that they were about to hit me. Similarly, even the white lines painted on the road seemed to be rising up to attack me. Of course this was not really happening, but it was a bit scary!
I am only now realising why I become so tired during the day: I am only able to deal with one thing at a time. This means that (for example) if I have several items to take to the bedroom, which is at the far end of the house, I cannot take anything else at the same time, or I will become confused. Needless to say, this requires a lot of walking!
Another annoyance is the changes in my speech. The words I am writing seem to have a mind of their own, to the extent that the word that I wanted comes out quite differently. This becomes worse if I am elated or agitated, or if I am in a group of people. It also happens if I speak too quickly.
Generally, I am managing quite well, despite the fact that I am getting slower – most days I am able to do my ‘chores’ (make bed, wash dishes, deal with washing, etc). I continue to need at least one rest during the day. If the routine is altered (such as having to leave home early in the day), I easily become agitated. Similarly, if several people are talking at once, I feel very jittery. Alan continues to assist when he can, and lets me do what I can.
I seem to be living in a permanent dilemma – I cannot admire Alan enough, as he has to unravel my garbled requests to help me with any number of seemingly simple tasks, which are now beyond me. Were it not for him, I would not function effectively at all.
I have become aware of the need for rests during the day. On occasion I am unable to have a ‘proper’ rest – this being an opportunity to lie down for at least half an hour – and then I feel very tired and confused.
I am aware of the inevitability of the disease and this seems to spur me on to put my thoughts and feelings on paper. Perhaps some future reader may glean some measure of understanding about this misunderstood condition.
This story was first published as a Living with Memory Loss supplement in the Alzheimer’s Australia Vic newsletter, Living with Dementia, October 2004.
The Brain
