Stop thinking, start doing
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- On 29th April 2016
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A person with dementia loses the ability to make their own choices and lead an independent life in the latter stages of the disease. Christina Macdonald explains why there’s a life lesson to be learned
My friends often ask me how I feel when I visit my mum in her care home. Only last night, a close friend asked what effect visiting her and seeing her virtually helpless has on my mood and general wellbeing. As anyone close to a person with dementia knows, you tend to experience a range of emotions. And it’s usually linked to how the person is coping or feeling on a given day. When mum is having a bad day, she will throw food and drink at the staff trying to care for her, and shout at anyone who gets in her way. It’s sad for me to see her like that, as I know she would be mortified if she could see her own behaviour. And when she’s having a good day, she tends to be relaxing in front of the TV with a cup of tea and her favourite biscuits. She smiles when I arrive and holds my hand. We talk about very little these days, because it’s hard for her to process information, so our conversations are short and mostly revolve around what we are watching on TV and whether she wants another cup of tea.
Mainly I feel sorry for mum. Sorry that she has been robbed of her liberty and on some occasions, her dignity. I know she would hate being washed and dressed, as she was always such a private person. I feel sad that she has effectively lost control over her life and is incapable of carrying out basic tasks and making decisions that most of us take for granted. I resent the fact that she can’t lead the life she would want to lead, going out, socialising and organising her own routine like other people. It seems extremely harsh that someone who worked hard all her life, earning a living and raising a family, should be deprived of the chance to relax and enjoy her retirement. I also have to admit from a personal perspective it sharpens the mind. Seeing mum lose the ability to make her own choices and lead an independent life has made me realise the value of the freedom that healthy people have. Good health is the most precious commodity anyone can wish for. When you’re in good health, you can lead the life you want to lead, or at least move towards achieving your goals. You have the energy and stamina to make the changes you want to make. When you have dementia, you can’t make your own decisions and be in control of your own destiny. Those in the later stages of dementia have no control over their daily routine.
The life you want
Seeing my mum go through the various stages of her dementia makes me want to shout from the rooftops that we must live our lives the way we want, while we still can. Anyone who is unhappy in their current job, relationship or personal life, or who wants to change something, should do it now. I quit my previous job after six years because I was unhappy. Some thought it was a reckless thing to do, but I know I made the right decision for my health and emotional wellbeing. I honestly think I have mum to thank for that. While it wasn’t possible to ask mum for advice, seeing her predicament gave me the courage to quit. Life is too short to be unhappy when you can still do something about it.
So how do I feel when I visit mum? Each time I leave the care home and walk towards my car, one thought unfailingly goes through my head: ‘Don’t waste time. It’s too precious.’ None of us know what tomorrow will bring. We must do our best for loved ones with dementia, but we also owe it to them to count our own blessings, and realise how fortunate we are to be able to make our own choices. As carers, we know better than most that health and time are both priceless.