This is the first post that I will be writing in a series that I will be calling Living with Dementia. Today I am beginning what is a personal mission to me, and that is to discover what can I and others do to ensure we never get dementia ourselves and what can be done to help people who already have it, and equally as importantly how their families can best cope when they are faced with it.
Now this may sound rather strange coming from a healthy lifestyles blogger and a fitness instructor. Maybe as I’m 50 years of age it could be interpreted as signs of me entering a mid-life crisis. But I assure you it is no such thing.
Dementia is a neurodegenerative, progressively deteriorating and terminal clinical syndrome characterized by a loss or decline in memory and other cognitive abilities. Most recent scientific thinking is that dementia may be caused by various diseases and conditions affecting something like 30 million people worldwide, and presently there is no cure for dementia.
Now that in its own right is a very worrying statistic, 30 million is one large number of people, but still isn’t the cause of my personal mission to bring the subject of dementia to the heart of this my blog.
Dementia really has a terrible effect on the person who has it. Some of which include:
• Problems with memory, especially for more recent events (short-term memory)
• Problems with processing and sequencing information which make thinking, reasoning and carrying out tasks more difficult
• Changes in mood, especially anxiety and depression, and a sense of confusion, not knowing what to do
• Cognitive problems – it gets harder to understand, remember, think, do sums, learn new things, talk or make judgements
• Functional problems – it gets hard to do complicated tasks. As time goes on, it gets harder to do the basic task of looking after yourself, like washing and dressing.
Nobody would want to live like this, living with dementia is dreadful, and the thought that this may be possibly what you have ahead, of course you would do anything to discover how to prevent it. So that is part of my reasoning for doing this, but not my only one.
In my own country, England, I’ve seen statistics that say there are 700,000 people with dementia. But the news gets worse. Approximately one in 20 people over the age of 65 have dementia. By the age of 80 about one in five are affected, and 1 in 3 people in the UK will have dementia by the time they die. I find this frightening.
Perhaps you have to see the effects of dementia to know how bad it is. When I say bad, maybe I mean more like sad. I referred to it in a previous blog that I titled Caring for the Caregiver
I see the results of dementia every time I visit my mother. She has dementia. She is no longer able to do anything for herself. She sits in her chair all day long, able to do, or say virtually nothing. To me these days are as dark as they will ever be. She’s my brilliant mum, my wonderful, loving, so intelligent mum, the woman who fed and cared for me, the person that made me believe I could do, be and have everything I put my mind to, the one that made sure personal development was central to my whole life. I owe her everything, all I am is due to her.
She has lost the skills and intelligence that were the heart and soul of all she was. With this she has lost her ability to engage in meaningful interaction. Mum’s short-term memory span is now virtually non existent, so repetitively she will ask over and over again the same thing. . She’s literally lost her amazing brain, there’s no past, no future, nothing to plan, nothing to think about, she’s just existing in the here and now, if you can call it existing. It’s like she’s a child. Sometimes she’s frightened and alarmed, constantly asking ‘what should she do’, but then she knows there’s nothing she can do and she gets so frustrated.
At times she looks so sad and lost, and she forgets so much. Over Christmas when the family were around her. She remembered who I was, but would then ask who is she pointing at Laura Jayne my eldest daughter, and that one indicating Carly my youngest, We are his daughters, your Granddaughters. After it happened for about the 5th time you could see how upset the two girls were getting.
My Mum was a unique individual who has lived a fantastic life history. I hate the fact that my children missed out on so much of this amazing woman. If they though the Spice Girls was the epitome of Girl Power they really needed to have known their Grandmother better but alas living with dementia has prevented that.
I may be a personal development coach, skilled in the use of 100’s of techniques in how to deal with emotions, conflicts, relationships, yet with everything I know I do at times truly struggle when I see my mum as she is. I sit there wishing I could remove this veil and just for a time once again have a conversation with that brilliant woman who taught me so much. I miss her and that’s the problem. I feel so sad that she has to be lost behind this screen as I call it. She deserves better for all she had to do through life.
That’s the problem with living with dementia it creates repercussions for everyone within the family all who have to come to terms to living with dementia.
The thing I try and teach my daughters, is that this isn’t her way to grab attention for herself, in fact a person with dementia can’t prevent or control any of what they do. You can’t place their behaviour in the context of normal relationships.
I worry as much for my sister and my Dad which was the point I covered in my previous post. Caring for a loved one with dementia is emotionally crippling. It’s inescapable: You and your loved one share a history together. So it’s impossible to attain a distance of neutrality or detachment while you see the person changing radically in front of your eyes.
You can’t separate a person you’ve long known as vital and healthy from the person they now see as declining unpredictably but surely. Remember, no matter how hard you try, you can never separate your emotional connection with your loved one from her irrational behaviours.
Statistics report that people caring for those with dementia suffer from depression twice as often as caregivers of persons with other illnesses. Family caregivers of people with Alzheimer’s disease suffer illness more often and typically request assistance least often.
Sometimes the pressure of caring for elderly parents or persons with dementia can lead to stress. You begin to feel overwhelmed and unable to cope. These are physical, emotional, and behavioural warning signs of stress. Over time, stress can affect the body’s immune system, and illness can result.
Caregiving isn’t easy, and it’s important to make sure your aging family member does not take up all your energy. Make sure you find ways to pull together as a family and work together for everyone’s benefit.
Well that’s it for today, but that’s just a start to my series on Living with Dementia. If you want more information check out these two sites:
The Alzheimer’s Society Website www.alzheimers.org.uk
Dementia Care Partnership website www.dementiacare.org.uk
If any of you have any stories or information to share about living with dementia, please send it to me at [email protected] and title the email Living with Dementia, and if you would like to be a guest blogger even if you’ve never blogged in your life well here’s your opportunity.