I ask you to sign the Dementia Action Week petition – this is my story:
I will never forget the day when school phoned me to ask me where I was. My 5-year-old was waiting for my mum, her grandmother, to collect her. My mum had left the hospital, where I was with my older child, over an hour before to collect her. I called her mobile and no reply. My heart started pounding with fear.
I look back on that and realise it was probably part of the increasingly odd picture that we were seeing. Having taken the wrong turning, my mum got completely lost. She didn’t phone me or ask someone for help, she carried on going, getting more and more lost. Happily, over an hour later she arrived at school and she was reunited with her grand-daughter.
She Never Forgets
My mum has never forgotten appointments or birthdays, even now, she remembers lots of things. She may forget words, names and the order of events but she has always been there. Her difficulties seem to have affected her problem-solving skills and what to do in tricky situations. There was the time that someone drove into her car in a carpark. She accepted a mobile number on a piece of paper as proof. She didn’t take the registration number or name of the person and forgot that she had a camera in the car. Yes, she could have felt stressed and yes, we all make mistakes but there was a series of these.
Then the Diagnosis
Incredibly, very few people could see any problems. The term ‘social front’, that clever way people with this type of dementia can disguise the problems. If she forgot a name she’d say ‘Go on, you know who they are, have you forgotten?’ Her problems became ours more and more.
One day she went to the doctor and explained she had memory problems. A referral to an elderly mental health consultant confirmed the diagnosis confirmed and that’s when things seemed to change. She became resentful that people thought she had problems. The doctor didn’t listen, they sent her to the brain person when the problem was with her back. When they took away her driving licence, they also ‘stole’ her independence but hadn’t sorted the real problem. She relied on my dad to take her everywhere or members of her church to give her lifts. She was still my mum and still is my mum. Sadly, she can no longer stay with me and do my ironing, pull my weeds out and give me the cuddles I desperately need. But she is still my mum.
We Need to Take Dementia Action
Dementia Action Week 17-23 May
The Dementia Action petition will be live from the 26 April–June 2021.
Alzheimer’s Society is leading the national Dementia Action Week. This
event aims to encourage us all to take action and improve the lives of people affected by dementia. They want us to help cure the care system by urging government to reform social care now.
The nearly 1 million families living with dementia, including the 40,000 aged under 65, should be entitled to a good quality of life. Every person with dementia should be able to do the things that matter to them for as long as they possibly can.
CLICK Here to Sign the Petition
Dementia is a Cruel Condition
Dementia affects every person differently. There is more than one type, mum mum has mixed dementia – Alzheimer’s and Vascular dementia. My best friend’s dad had Lewy Bodies dementia which presents with Parkinsons symptoms and Alzheimer. It was awful listening to what she, her dad and family went through. He couldn’t swallow properly so nearly choked on many occasions. He became quite violent as he didn’t understand what was going on. He’d regularly fall if someone accidently left a door open – he’d grab the opportunity and wander off.
The worst part is that that dementia isn’t curable and most of us don’t get the support we need. My 86-year-old very hard of hearing father lives with my mum as her main carer. They live in the middle of no-where and don’t want to move – it’s their home and the place we grew up. It’s all of their memories, should they have to move?
They see a lovely and helpful community psychiatric nurse once a month. The NHS split their fantastic consultant’s job which means he no longer has time to see them. Private carers visit twice a week but there is nothing else. Lockdown closed groups and my mum’s dementia means she can’t cope with Zoom.
Lack of Funding
Over the last few decades, the lack of funding and difficult to access care system has made things even harder. The pandemic has made it even harder. During the pandemic, my mum’s GP practice only offered appointments via the phone. For my hard of hearing dad and mum with dementia this did not work. They are in a better position than most, between my sister and I, we try to sort things. I work from a distance because of the pandemic.
The Dementia Care Advice Service – Facebook
Carers Support Line Opening Hours
01933 677907, Option 2
Monday-Friday – Mornings 9am – 12 noon and afternoons 1pm – 4pm
An answer phone service available outside these times, please leave a message and they will return your call. Service is for information, advice as well as emotional support.
If there is one thing you do having read this, is sign the Alzheimer’s Society petition
Some of the scary stats:
- One in 3 of us will develop dementia in our lifetime
- By 2050 an estimated 152 million people, worldwide, will live with dementia, hat’s a 204% increase from 2018.
- People with dementia fill 1 in 4 NHS beds.
- The economic impact of dementia is greater than cancer and heart disease, combined.
- Delaying the onset of dementia by 5 years would reduce the numbers of people living with dementia by 36%.
- There are over 700,000 informal carers looking after people with dementia.
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