As we get older our brains also age and we lose some of our capacities naturally.
For the 1800 people who are diagnosed with dementia each week in Australia (that’s 1 person every 6 minutes), their brains start to die, and the person deteriorates over time. This is not what we expect out of normal ageing.
In this post I share with you the early changes we noticed with my mum, in the hope of making it easier for you to recognise some of the symptoms and behaviours that are early warning signs of this disease. You must also understand and accept that Alzheimer’s disease and other forms of dementia present many and varied effects in each individual person.
Number 1. Lost for Words
For almost two years before her diagnosis mum would search for words in conversation. The context did not matter as she struggled to find the right word. She would say ‘that’ instead of the word she was struggling to recall, so her speech was filled with: the ‘that’, her ‘that’, let’s ‘that’, it was ‘that’, or what ‘that’.
At that time, we did not know that we’d have to face the anguish of this sinister disease. The earlier the diagnosis, the better for the person, their loved ones, and the carers.
Number 2. Hearing v Confused Conversations
Mum loved to chat. Because she was deaf in one ear she’d sometimes miss parts of a conversation - we were used to repeating things. She really enjoyed having a chat!
But she began to intermittently ‘switch off’ and lose interest in what was going on. At times she was nervous and defensive. I could see her trying to listen intently and then just walk off in frustration, which was her way of coping with a situation she did not fully understand.
This change in behaviour was the disease taking a little more of its hold. Most conversations were confusing to her. She needed lots more time to think and process information.
As difficult as this was to deal with, it was even more difficult for mum to make sense of what was happening to her. It was important to me that mum did not feel isolated or left out, but how do you help your mum to be more involved in what was going on around her once more?
Number 3. Mixed Cutlery
Have you ever placed the spoons or the forks in the wrong place in the cutlery drawer? Most of us have done this at one time or another.
Mum started doing this regularly and was not aware of how mixed up the cutlery was. She was unable to recognise the individual pieces.
To not make a big issue of it and make her feel bad, I would just put them back in their correct place. In the big scheme of life this thing didn’t really matter, but the road we were travelling on was leading us to that sneaky thief of life called Alzheimer’s disease.
Number 4. Loss of Spatial Awareness
I became aware of this at the dinner table. Mum would reach for the salt and pepper and miss them – her hand was going just to the right of them. The same would happen again when reaching for cutlery, a glass, or other items on the table. I thought there may be something wrong with her eyes or her arms until I researched the disease to learn that this indeed, is a symptom.
It wasn’t too much of a problem until it later began to affect her driving. Losing her driver’s licence was one of the most devastating days of her life. On that day, she made it perfectly clear that on top of everything else, she lost her independence as well. I will never forget her cries of sorrow.
Number 5. Confusion, Fear, Confidence
For the person living with dementia, all these symptoms create confusion, and confusion translates into fear. Mum found it difficult to understand what was happening to her and she would avoid talking about it, so for me it was a challenge to understand her emotions. She felt confused and I felt powerless to assist her appropriately.
Alzheimer’s sufferers question their confidence as little by little their capacity to perform ‘normally’ is stolen away from them. Everyday tasks that were once easily done unconsciously, become frustrating to deal with as the brain loses those connections. One thing is for sure, no-one deserves this cruel disease.
Number 6. Who are Those People?
Not recognising reflections is common for people living with Alzheimer’s. Eventually they will not recognise their own reflection in the mirror.
Looking at the windows at night mum would often ask us who were those people and what are they doing here. She was looking at our reflections as we moved around the room but couldn’t make the connection between the two. Living alone was frightening for her. When I phoned she would tell me about being scared by those ‘other people’ in her home.
One way to minimise this problem is to close all curtains before it gets dark and remove or cover all mirrors around the home.
Dealing with the ‘imaginary people’ (while acknowledging that perception is reality) requires lots of sensitivity and important decisions. How do you decide where the best interests of a person lie along that fine line of personal independence? When is it right or wrong for your loved one to be living at home alone?
Number 7. Loss of Time and Day Perception
It wasn’t long before mum lost track of time and was confused about what day it was. The short term memory loss of Alzheimer’s prevented her from recognising clocks and her watch. Eventually she simply stopped looking at them as they had no meaning for her.
It’s difficult to watch someone you love lose their ability to function in this way. Day to day tasks that most of us take for granted become challenges to them and eventually disappear from their existence.
To support the person through this, it is very important to use some routines to simulate the rhythm of life as they lived it before their diagnosis. For mum it was important to go to church every Sunday. She was blessed to have a very special friend who would be calling her the night before and again on the day to remind her, take her to church, and bring her safely back home. A friend in need is truly a friend indeed.
Number 8. Lights On and Off
Leaving lights on throughout the home at night is better for the person living with Alzheimer’s. This makes it easy for them to see where they are going.
Problems arise when they cannot turn a light on at night. They may search for the switch and not recognise it, or forget that turning a light on is actually an option. Darkness is frightening and creates more confusion, increasing the possibility of an accident causing injury.
How can you help? Remove any items and furniture that they may bump into or trip over and install sensor lights. When I was visiting mum I would leave the lounge room light on at night which lit up the hallway for the toilet and bathroom and the way into the kitchen.
Yes electricity costs money, but how much is your loved one’s comfort and safety worth?
Number 9. The TV Remote
Mum lived alone and TV was a good companion. The Greek channel was her favourite and she loved the soapies and music shows. With horrible dementia creeping in, this joy of light entertainment was so cruelly taken away from her as she began to struggle with the remote.
Turning the TV on, getting the right channel and adjusting the volume became a big challenge – enough to cause her frustration, anger and tears.
There were (and still are) 445 km between us, so it was impossible for me to ‘just pop over’ and help her. I would step her through it over the phone which sometimes worked and sometimes didn’t. I often called on nearby family members to call in and help her out. How I wished I could have been a genie!!!
Number 10. Tuning Out
People with Alzheimer’s have difficulty taking in many sights and sounds all at the same time. Their brain can’t cope with all the stimulation and this adds to their confusion and worse, it increases their feelings of isolation and exclusion.
They cannot take in everything that is happening around them, and so deal with it by simply tuning out. When you notice a blankness in their eyes, particularly when out in the community or at a family gathering, this is what may be going on for them.
Help them with love, and the dignity and respect they deserve, and you will intuitively know what to do to ensure they also enjoy the environment they are in.
Footnote: Mum is in her 10th year now and has end stage dementia – a cure will be too late for her, and many others like her. Scientists need cold hard cash to find this cure now.
We have taken on a fundraising challenge and in sponsoring us, you are making a valuable contribution to this cause.
Every person who receives a diagnosis today needs your tax deductible donation now.