"People think that Alzheimer's is only a question of forgetfulness or repetitive questioning, but it's so very much more..."
Although he died nearly six years ago, I had lost my husband to Alzheimer's disease more than 10 years before that but the stress of caring for someone with this insidious disease is still clearly imprinted on my memory.
The nights with little or no sleep, being prodded awake with an "are you asleep?" or the night when I was wakened by the glare of the overhead light to find him shaved, dressed in his business suit and ready to go off to a very important meeting - the clock showed 3.15am. People think that Alzheimer's (which is one of more than a hundred forms of dementia) is only a question of forgetfulness or repetitive questioning, but it's so very much more. There are many symptoms that are not spoken about. My husband's earliest symptom was a change in his gait. From being a man who walked tall and so fast that I often had to run beside him to keep up, he started to shuffle and scuff, forgot how to stroll and couldn't walk down gentle slopes without holding on to me like grim death. In his stubbornness he wouldn't put in his hearing aids; "there was nothing wrong with his hearing, people these days mumble and don't enunciate clearly"; and "the TV volume wasn't working properly that's why it needed to be set at 92". If it wasn't lack of sleep, it was stress - stress at not being able to go to the toilet without a constant banging on the door and "where are you?".
Stress when trying to make a telephone call became a nightmare with him trying to grab the handset or writing strange messages to pass on. Stress with his lack of inhibition when out, talking animatedly to total strangers, or sitting down next to them in a restaurant. Stress trying to explain to him that sadly, he must not go up to small children in the street and start chatting to them, while apologising and explaining to terrified parents that he wasn't a paedophile, it was just his disease that was at work. The stress of dealing with his kleptomania - returning cutlery, glasses, or books to their rightful owners. What an embarrassment! He developed the need to go out for a drive every day. He couldn't drive himself without getting lost and even clocked more than 50kms just to go to pick up the newspaper. His driving became so erratic, one moment crawling along at 55km/h then the next speeding at 120! The final event (that much to his anger meant he needed to hand in his licence), was not being able to discern what Keep Left meant on turning into a street with a traffic island, and that was after almost going down the off ramp onto the freeway near Geelong with a large truck speeding towards us.
It is so very sad when loved ones who have always had incredibly good memories for every detail of their lives; who could learn huge reams of lines for a play; develop the need to have their memories written down for them, not as their own thoughts, but because they just can't remember the name of that man, they worked beside for 10 years, or that devoted secretary's name. The change in empathy was another early symptom of my husband's demise. This was very evident on the day when a dear friend's daughter had tragically succumbed to a massive heart attack. He just couldn't fathom why I was so upset; this from a man who had cried uncontrollably when one of our dogs died unexpectedly.
The wandering tendencies of some folk with a dementia diagnosis can be incredibly scary. My husband had been attending a meeting with me in a building immediately opposite where our daughter and her family lived, and he decided to "pop over to see her" while I remained behind. When I walked over to pick him up, no one had seen him. It was winter and dark, with no pavements to walk upon. It took two hours of driving frantically around the district before I finally found him back at the building because he had got so distressed, that thankfully, he decided to knock on a stranger's door and ask them to take him to the building that he could describe but couldn't find. From then on, I carried a photograph of him, and needed to use it more than once. Life can be funny sometimes too.
I still wonder about the reaction of the poor person who lived two doors along from my daughter when they found a trailer load of garden cuttings dumped in the middle of their driveway - because our daughter was going to have a bonfire and had offered to include our garden waste! These incidents and traits are told to you, dear reader, on the chance that you may relate to them because you are going through similar situations in your life; in the hope that in your isolating situation, caring for your loved one, you will realise that in the Macedon Ranges there is at least one volunteer group who understands, empathises, is not judgmental and exists to support you and help you navigate this very bureaucratic world. We offer an opportunity for a brief respite in your caring role, chatting sociably with others who understand what you are saying and feeling. A chance to have a good cry, or to laugh and relax, as well as learn through shared experiences. Woodend Lifestyle Carers Group is there for you. We truly understand because we have lived or are living with a loved one whose life has been crushed by this awful disease. With our ageing population and the rapid increase in dementia there is a desperate need for the stigma to be removed, and for communities to be as understanding as they are when a friend develops cancer.
The Woodend Lifestyle Carers meet fortnightly at the Woodend RSL in Anslow Street, and weekly for coffee on Wednesdays at The Chamber in High Street, Woodend. For more information call 5420 7132. Although located in Woodend, we are in fact a group for the whole of the Macedon Ranges and its neighbours.