My mother was diagnosed with Alzheimer’s disease two years ago, aged 60, and there is barely any aspect of her life that has been unaffected by her diagnosis.
She had to retire earlier than she would have otherwise and has not been able to enjoy retirement to the fullest, as she so deserved. Mum’s communication has also been affected by the dementia.
She often has things she wants to tell us because she still has interests and notices the things going on around her, but the words regularly escape her, leaving her scared, sad and frustrated.
Sadly some of mum’s friends do not call/visit anymore as they are too daunted by the diagnosis – even though mum is still very much herself minus the same ability to express herself. Unfortunately they proved Mum right in her earlier reluctance to share her diagnosis as she feared people would immediately treat her differently if they did know.
My father is having to learn skills that he has not had to master previously, such as cooking. At the same time he’s aware that he needs to tread carefully and ensure he’s not taking tasks from mum before she is ready to give them up, as this can upset her. This is one of the crueller parts of Alzheimer’s, that the person living with the condition is totally aware of the fact that they are losing their capacity to perform even the most menial task.
These are just a few of the things mum deals with daily, along with the terrifying knowledge of what lays ahead.
Mum has expressed to me that her greatest fear is being in a care facility and being quite aware, but not having the ability to speak and express herself. I believe this is one of the most important messages we need to get out to the wider community.
Although people with dementia may not be able to properly communicate, they often still understand a lot of what’s going on around them.
They deserve respect, compassion, dignity and at least the same standard of care as someone fully comprehensive and expressive.
Most people reading this would know about these symptoms and struggles, as they have been touched in some way by dementia. The general public however, knows very little about the realities of the disease because it is frightening and this is what I strongly believe needs to change.
We must educate people about all forms of dementia.
People need to know that the person with dementia they encounter may seem incapable of comprehending because they are unable to express themselves, but that they may be quite aware of what is happening. My father, siblings, nephews, my children and I have lost some part of our precious mother and grandmother already, and remain heartbroken and scared about the future.
Two things are certain for me though. Firstly, we will all be with mum every step of this path she walks, with love, compassion and admiration for how she faces it. Secondly, I personally will do whatever I can to raise awareness about the realities of living with Alzheimer’s so that people with the condition may be better understood and treated in future.
If you meet someone out in the community that you suspect has some form of dementia, PLEASE treat them with respect, kindness, patience, understanding and care.