Adam Sibley, author of: “An Unbreakable Bond,” speaks with Alzheimers.net about the time he spent caring for his mother with Alzheimer’s. He promised his mother while she was battling the disease that he would write a book about their experiences with dementia.
Learn more about the author and the advice he shares for Alzheimer’s caregivers today.
Unbreakable Bond Outlasts Alzheimer’s
I cared for my mum when she was diagnosed with early onset dementia at the age of 51; I spent four years caring for her before she passed in 2013.
The main thing I learnt through the experience is, when you are caring for someone with dementia, there is no such thing as a normal day. I think the most dangerous thing you can do is have expectations when caring for someone with dementia.
Remember to celebrate good moments when they happen — and if you are lucky you will get a few — but never go into a day expecting them. Try to be adaptable and calm.
Through the sadness of this awful condition, it is sometimes hard to find happy moments, but if you look hard enough and are willing to celebrate the smallest of victories, I am sure you will find some.
Although I eventually lost the ability to have a conversation with my mum, I was still able to communicate with her. Early on I realized if I was sad, my mum would reflect that emotion. If I was a bit stressed it would make her anxious. If she felt like she had done something wrong, she would be apologetic and try and move on from the event that had just happened.
After I understood the pattern, I would make it my goal to be as calm and patient as possible. I’m not saying I was calm and patient all of the time, but I remember the times that I wasn’t and how bad I felt afterwards. Knowing that you haven’t been quite the person that the loved one you are caring for needed that day is one of the worst feelings in the world, so I would advise anyone to avoid that at all costs.
One thing I would say, is never be afraid to try different things when caring for someone with dementia, they might not all work but by trying different things it may jolt a memory, a thought or a reaction. Whilst your loved one is fighting the condition I think it is up to you to try and stimulate them as much as possible.
Remember that trying is never failing; failing is not trying at all. Never be afraid to ask for help and although it is so hard try and make each decision about the person you are caring for and not what is easy.
I think it is important for as many people as possible to share their experiences of dementia and dementia care as everyone has a unique story. Every experience you have had could help someone else, so never be afraid to share.
Thanks for your time reading this article, and I truly hope my words and “An Unbreakable Bond” can help someone.
Have you read “An Unbreakable Bond?” What insights did you gain from the book? Share your thoughts with us in the comments below.
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