Dementia is the name for a group of symptoms affecting memory, thinking skills and other mental abilities. Alzheimer’s is the most common form of dementia and in 2019 there were over 850,000 people with Dementia in the UK. Dementia can affect all aspects of a person’s life, as well as their families. If you are affected by Alzheimer’s know that there is support available and you are not alone.
As part of Alzheimer’s Awareness month, Dawn, a member of the National Centre for Diversity team has taken the time to share her experiences with loved ones affected by dementia.
“Family members, including my great-grandma, my grandma and most recently my father-in-law have all had some form of dementia, and I’ve seen the impact on everyone within the families over a number of years.
In my father in law’s case, we saw the deterioration really, really quickly. It’s not just him that suffered; it was everybody else, and that’s the hard bit. We’ve seen it through a long time: each person had different experiences. There isn’t a one size-fits all. It affected them all completely differently, and it affected us all differently.
There were similar symptoms – the forgetfulness, the anger and lashing out in other cases, remembering things from years and years ago but very little short-term memory. The running theme through it was the confusion, along the rapid deterioration towards the end of life. That was the thing that got me – that it happens so, so quickly.
I know people say that you lose them and then you lose them again: I never understood that, until it happened. You come to terms with them not being the person that they always used to be and then they’re not there anymore. You say a goodbye to start with when they are very poorly and somehow you feel somewhat “robbed” of that person. But they can carry on for a good long time: in my grandma’s case she did, my father-in-law had about 8 years of suffering. It’s a long process sometimes, and it is hard to comprehend.
Geoff, my father-in-law, had vascular dementia that progressed quickly following his later diagnosis of Alzheimer’s, which we now know is another form of dementia. We think a lot of the rapid deterioration was an effect of the pandemic.”
Geoff and wife of 50 plus years, had been receiving external support before lockdown, without this, Dawn feels that they both really struggled.
“He was getting a lot of help, The Alzheimer’s Society and Dementia UK were amazing, with both of them, providing them with support telephone numbers, websites and someone to listen to.
He used to go to a memory group, a lot of his old army friends were there, that sparked a lot of memories off for all of them. You could ask him what his name and rank was, and he’d give it to you straight away. We found this with my great-grandma as well, the long-term memory was amazing. She could tell you where she was when the First World War broke out and what her brothers rank was, but little stuff, like have you had a cup of tea this morning, she couldn’t remember.”
“Geoff got lots of support with the memory groups, they used to come and pick him up, pick up Mum, and take him off for days out. They gave her the tools to deal with it, they were always there for her. It wasn’t just the person who had the Alzheimer’s, they were there for the carers as well. They were amazing.
Just to see him with his old friends from the army was great, he was back to his old self. They had that common ground. When he came out of that again he would be okay for a couple of days, and then he’d just slump.”
Without that in-person support, Dawn feels his isolation and the confusing situation of lockdown, increased Geoff’s decline.
“He couldn’t understand why he couldn’t go out to see his mates. He couldn’t understand why he couldn’t go out every day and do what he used to do. It was trying to keep him in, and keep him safe, and explain to him in terms that he could understand.”
I”t was just really sad, especially for Mum, we couldn’t go help because of the restrictions and the external help they’d been getting was restricted too.”
It’s difficult to come to terms with, but Alzheimer’s and the other forms of dementia can turn the people you love into somebody you don’t always recognise.
“My great- grandma she was accusing us all the time of stealing stuff from the house. I remember one time we went to visit, and she went you ‘You’, meaning me, I was probably about 12 at the time, ‘have stolen a curtain’. One curtain, why the heck would I steal a curtain?
Geoff forgot who people were. That was hard for the kids, it was hard to try to explain to them. When he used to see Violet, the little one, his face used to light up: he knew who she was. He was always very protective of her. “
“When they do succumb to it, you feel that sense of loss all over again. It’s really hard, I wouldn’t wish it on anyone. It’s so debilitating, but you get through it, and you find the funny moments. Like my great- grandma with the curtains.”
Dementia changes people: those who have it, and their loved ones.
“Grandma passed away 7 years ago. She was always active and had a double hip-replacement when she was 75. She used to go walking up and down the lane to get her steps in. Everybody knew her, she was the secretary for the community centre in the village. She wrote for the local newspaper, she did that for years, she was a nursery teacher. She was just always baking and knitting and sewing, she was always busy.”
“The diagnosis and the change in her almost came from nowhere, she just changed completely. She got violent, couldn’t remember anything. Wouldn’t have my uncle in the house, she accused me of stealing her shoes. She no longer had any interest in anything. It was so so sad to see.”
“Geoff doted on his grandkids. Really, really did.
He was just active, a proper granddad, taking all the kids to the swings, slides, holidays, sandcastles and ice-creams. He was just amazing. As a couple, both him and Pauline used to do a lot of tea-dancing and on Friday and Saturday night they were doing their “Strictly” thing. I remember one time, Geoff was dressed all in pink, he looked like Mr Blobby. Pink trousers, pink shirt, pink jacket, pink socks, darker pink tie because it couldn’t be the same shade of pink. Still makes me smile now. To practice, he used to used to move furniture out of the lounge into the kitchen so that they could dance around the room.
He was a family man and when it came to the point where he didn’t know who anyone was: that hurt a lot of people, but that wasn’t his fault. He got frustrated and couldn’t express himself.
We have fond memories; in time you forget the rubbish bits and you just remember the pink shirt.”
“You have to take every day as it comes, and you never know what they’re going to be like. You’ve got to take what happens as it happens, and you’ve got to take it all in your stride. You’ve got to remember it’s not their choice. You just hold on to the good bits, you can’t really change anything. You do get frustrated, not with the person, but with the disease. You need to if you can, find the positives in it.”
Organisations like the Alzheimer’s Society and Dementia UK can provide you with the tools that will make your journey easier.
“I would just say for anyone going through it: just reach out and ask. Nobody is going to judge you for asking for help. Especially if you are on your own, and you are looking after your loved one by yourself, it is so, so difficult. The thing that’s scary is trying to deal with it on your own, there are professionals who have the tools that they can share with you. The Alzheimer’s Society was just fabulous, as were Dementia UK.
Everyone deals with it differently. There isn’t a one size fits all but the organisations out there to help, will help. They’re there for the person that’s suffering and their loved ones as well.”
Overall, try to remember those pink shirt and missing curtain moments. If you can, in time.
