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Alzheimer’s is not a dirty word

I have to admit that Alzheimer’s was not a subject that I had heard much about before my mother was diagnosed with this dreaded disease 18 months ago. For that is what it is. An irreversible disease, that strikes indiscriminately. There is absolutely nothing to be ashamed about. And yet, in my opinion, it appears to not be spoken about widely. As if, somehow, having a loved one with Alzheimer’s is shameful. Hence why I am writing this today.

The first signs my sisters and I had that something wasn’t right with my mother was her memory. She had very little short term memory and would often ask the same things repeatedly. There were mood swings too. Looking back and with hindsight, it’s easy to notice but at the time, we put it down to aging and perhaps loneliness, after losing dad years earlier.

It was only after we presented to hospital with mum having chest pain, that it was identified that mum had severe bruising on her chest from a fall, that she recalled nothing about. One thing lead to another, and it was through this process, that we received the Alzheimer’s diagnosis. Honestly, I had no idea what to expect. 18 months later, I have a better idea however until one has experienced for themselves, you never truly know.

Being one who likes to be fully informed, I then began to research Alzheimer’s and was put in touch with a wonderful organisation here in Australia called Alzheimer’s Australia. This organisation provides educational material, workshops and courses and many other support services to the carers and loved ones of those living with Alzheimer’s. I researched Alzheimer’s while taking my mother to numerous medical appointments. Around about this time, a contract I had was terminated early and I was left without work. Funny how life intervenes at times! I was available to take mum to the numerous appointments at that time. And she needed it.

This first 6 month period was a very tough one for my mother. She was quite confused and unwell and didn’t want to socialise, a departure from the social person my mother had always been. Fortunately, my mother improved after this, I believe due to the medication she was taking, and began socialising once again. Being social is so important for the wellbeing of those with Alzheimer’s as it keeps them active members of society. I have seen this with my very own eyes.

We were told by the neurologist that we went to, that not all people respond positively to the Alzheimer’s medication. And if they do respond well, that the medication may only be effective for up to 18 months. Fortunately, my mother did respond positively and the rate of decline of this disease was slowed down. Currently, Alzheimer’s medication (if it is effective) will slow down the decline of the disease but it will not reverse it. There is nothing, that I am aware of, that reverses Alzheimer’s.

As I live close to my mother and I do not have a 9-5 “job”, I tend to see her most days. I am regarded as her carer. While this is great from one perspective, it is also tough from another perspective. I do not have any medical training and am simply doing what I believe is best. My compassionate side has well and truly kicked in. However, the emotional impact of watching a loved one decline from this terrible disease, is significant. I am often physically and mentally exhausted, beyond what one would expect. At other times, I have felt emotionally depleted too. I feel that I have aged a lot since mum’s diagnosis. To say that I feel stressed, would be an understatement. And I am a healthy and fit woman in my 40s who is on top of my own physical, emotional and mental wellbeing.

It is my personal belief, that it is important that those who care for their loved ones with Alzheimer’s share openly and honestly. To help educate others and to remove the stigma. But also to receive support and comfort from others. That support is so needed. Being on the receiving end of support, has really lifted me up at times. It has encouraged me and given me comfort that what I am feeling and experiencing is totally normal and ok. That I am not going crazy or being selfish. I appreciate there will be periods that I will need a time out, so that I don’t burn out. My own wellbeing is critical. After all, if I am not well, how can I best support another?

If you take anything from this post, I hope it is that Alzheimer’s is nothing to be shameful of. It impacts many, beyond the one with the disease. And often, the carers and loved ones of the person with Alzheimer’s are doing it hard too.  They are likely to be physically and mentally exhausted and would welcome any support you could provide. Sadly, Alzheimer’s can affect anybody. Nobody is immune to it.

If any reader has been impacted by Alzheimer’s or would like to have a chat about this, I welcome you reaching out to me. Not as a professional but as someone going through the same thing with a loved one. I can’t promise anything other than to offer an ear, a warm hug and compassion.

With love, Georgia

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