***NOTE*** Information contained in this post about Alzheimer’s Disease was obtained from Alzheimer’s Australia. If you know someone who may be suffering from Dementia or you are caring for someone who is and you need help, please contact the National Dementia Helpline on 1800 100 500
My mother has Alzheimer’s Disease – often referred to as the long kiss goodbye as in many cases, including my Mum’s, the brain gives up long before the rest of the body does.
WHAT IS ALZHEIMER’S?
Alzheimer’s Disease is the most common form of dementia, affecting up to 70% of the population with dementia. Alzheimer’s disease damages the brain, resulting in impaired memory, thinking and behaviour. The rate of progression of the disease varies from person to person. There is currently no treatment and no cure for Alzheimer’s but certain drugs may alleviate co-symptoms such as depression and restlessness.
WHAT ARE THE SYMPTOMS OF ALZHEIMER’S?
- Lapses in memory
- Persistent and frequent memory difficulties, especially of recent events
- Vagueness in everyday conversation
- Apparent loss of enthusiasm for previously enjoyed activities
- Taking longer to do routine tasks
- Forgetting well-known people or places
- Inability to process questions and instructions
- Deterioration of social skills
- Emotional unpredictability
MY MUM’S STORY
Looking back now I realise that Mum was always a little bit ‘vague’. She would often repeat stories to me and when I would tell her that she had already told me something she would reply, “No I didn’t.” Despite this she was always active. Her and Dad played tennis 2 or 3 times a week after they retired, she was heavily involved in the CWA (Country Women’s Association) and at one time held the position of President at her local branch. She was also a Land Cookery Competition judge, as well as being a prize winner herself. They were also able to travel a bit, going on a few bus tours around regional Australia. And apart from some high blood pressure she enjoyed pretty good health.
When I fell pregnant with Miss M, they were living in a large-ish country town, not far from Sydney but 3 hours drive from where I lived. I suggested on the phone one night that they think about moving to where I lived (my oldest sister lived nearby as well) and before I knew it they had put the house on the market and it sold almost instantly.
They quickly found a house to buy and within 6 weeks they had moved. Mum seemed to settle quickly and was excited about the impending arrival of her grandchild. She came with me when I went to buy a pram and was happily knitting a jacket. (I will get back to that jacket later) After having an emergency C-section with Miss M I really needed some extra help at home and would ring Mum up and ask her to come over to help. Sometimes she would, but other times she made it sound like it was all a bit to much effort for her and this puzzled me greatly. I couldn’t understand why she wasn’t more interested in helping and seeing her grand-daughter.
Miss M was born in March and as the weather started to cool down I asked Mum if she had finished the jacket she was knitting and she said she had run out of wool to finish the front. She showed me the jacket and the only bit that needed finishing was the bands for the buttons and button holes. The jacket was cream and I tried to get Mum to finish the bands in some pale pink wool she had but there was no way she would do it. This wasn’t the Mum I knew – the Mum I knew would have whipped out that pink wool and had that jacket finished in no time. I know that jacket would still be sitting in a cupboard somewhere in her house.
After a few months my sister became concerned as well and we made an appointment to see Mum’s G.P. He wasn’t really much help and said that it was probably just a bit of age-related dementia as Mum was in her early 70’s by this time. About 18 months later I got a phone call to say that Mum had collapsed at her CWA meeting and been taken to hospital. I rushed straight to emergency and was told that Mum had probably suffered a mini T.I.A (Transient Ischaemic Attack or mini stroke) She couldn’t talk properly and the side of her face had drooped but after about 2 hours had passed she was back to her normal self and saying that she had just got a bit hot. The Doctor did however order Mum to undergo a ‘Mini Mental’ test to see if she had any impaired intellectual function and she did not perform to well, however it was still another 2 years before she was actually diagnosed with Alzheimer’s Disease. Now some people when they are diagnosed with this disease have awareness that something is wrong – Mum had none. And sadly, Dad didn’t either.
By this time I was working for an aged-care service in my local town so I knew all the right people to contact for help and advice. Trouble was by this time my sister and on were not getting on (that’s a whole other story) so everything I tried to do, she vetoed. It was an extremely difficult time for me as all I wanted to do was put some services in place to help Mum and Dad stay in their own home as long as they could, even though I knew that they really needed to be in full-time care. This was high-lighted even more strongly when Mum cooked lamb chops for dinner that she had possibly got out the day before and left sitting in the oven to defrost. She ended up with food poisoning and was very ill for a couple of days. Why didn’t Dad get sick? He didn’t eat his dinner that night as they were having an argument and he had lost his appetite!
In late 2004 we made the decision to move to the Gold Coast – 1100 kilometres away. It was an easy decision to make as we wanted our kids to have better opportunities education wise than we had. I had also reached the point where I knew no matter what I tried to do for Mum and Dad that it wouldn’t work so I made the decision to let go. After we moved in early 2005 I grieved for the loss of my Mum and Dad for about 6 months before I felt ready to move on. Dad passed away aged 86 in the middle of 2006 -walking with Mum to get the Sunday paper as they had nearly every Sunday for the best part of 30 years. My sister attempted to have Mum live with her after dad’s death but she spent more time in respite care and following a serious accident that my sister was involved in Mum was placed into full time care in 2007, where she remains.
The last time I saw my mother where she recognised me was 2009. Since then she has not known who I am and is now totally incapacitated and totally dependant on the nursing staff for all her care needs. She cannot walk or talk or communicate in any way nor perform any task such as feeding herself or toileting herself. She is 88 years of age.
WHAT I HAVE LEARNT ALONG THE WAY
* Family can be the greatest support, but also the greatest opposition when caring for someone with Alzheimer’s Disease. Please discuss everything openly and try to be on the same page.
* Older adults need to discuss openly and honestly with their children what they would like to happen to them in the event of an incapacitating illness.
* Carers of people with dementia need as much support as the person themselves.
* There is a strong correlation between depression and Alzheimer’s, especially if the person has a lot of regrets about the path that their life has travelled.
* If someone has no awareness of the fact they have Alzheimer’s, there is nothing you can do or say that will make them aware of that fact.
* Everyone should have an Advanced Care Directive in place.
I should also mention that our little family also lost Mr B’s mum to early-onset Alzheimer’s. She passed away after just 3 years aged 63.