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Real lives – what it is like supporting a loved one with dementia



This article is an extract from the Intermediary Mortgage Lenders Association’s (IMLA’s) equity, diversity and inclusion (ED&I) group meeting in September 2024.

To watch the video of the whole session and download the accompanying slides, visit: Lunch and Learn – Working In Mortgages 

 

Sally Wright, national account manager at Paragon, began the talk, saying: “Dementia affects almost a million people in the UK, most over the age of 65, and predominantly women. Dementia itself is not a disease, but a term used to describe a group of symptoms arising when the brain starts to function differently, and it impacts individuals in different ways.

“There are several different types including vascular dementia and Parkinson’s, but the most common by far is Alzheimer’s, which often involves a decline in memory, confusion, lack of reasoning and changes of mood, along with a loss of the comprehension of time. Obviously, dementia has a huge impact not just on the person who has it but their family members. Two of our industry colleagues share their stories.” 

Claire Askham, head of mortgage sales at Buckinghamshire Building Society, said: “My mum was diagnosed with Alzheimer’s in 2019. She knows that something is wrong with her, but she believes it is some kind of bug [that] she will shake off eventually. She laughs about the fact that she can’t remember things.


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“In fact, the main consolation about her condition is the fact that she seems happy most of the time, and never gets angry or aggressive. She lives in her own head. When she was well, Mum was a keen gardener, and when I speak to her, she will often tell me she has spent the day in the garden, or shopping with friends. Of course, she hasn’t done these things. She hasn’t left the house for years, except to go to medical appointments. But in her head, she is doing things, which is good. 

“Mum has physically shrunk and is tiny now as she has no appetite, except for chocolate. One of the kitchen cupboards is like a Cadbury’s storeroom. The doctors did say that an increasing sweet tooth was a sign of dementia. I’m just glad she is taking in calories, regardless of their form.

“Mum’s memory loss is a lot more of a challenge for my Dad, who won’t leave her side – she gets anxious if he is not there. She has the same conversations with him over and over again. Dad is 88 and I do worry that his caring role is impacting his own health and wellbeing. 

“Mum’s understanding is declining as time goes on, and she gets confused by little things like a slight change in routine more and more easily. It feels as though we are losing her little by little every day. 

“I see a lot of my parents, but I still feel guilty all the time. I feel I should be there more as I don’t know how long we have left. My brother has put his life on hold this year and moved in with my parents to look after them. Now I worry about him as well! I would like to get external carers more involved, who could lighten the load, and also bring a new energy or at least different conversations to the house. My brother disagrees. None of it is easy to navigate, practically or emotionally.

“I do have some practical regrets. Before Mum’s diagnosis, Dad did not want to believe that she had dementia, so we didn’t sort out Power of Attorney. It’s too late to do that now that she is no longer officially ‘of sound mind’. So, I would urge people with elderly parents to think about planning ahead on a practical level. 

“On the upside, my colleagues and managers have been amazing and very supportive, at Buckinghamshire Building Society where I work now and also my former employers Metro Bank and Legal and General. Opening up and talking to people in itself is incredibly helpful.” 

Marie Catch (pictured with parents), head of mortgage market development at Legal and General, added: “I have lost both my parents to dementia in recent years. Mum was diagnosed with Alzheimer’s in 2016, though I think she may actually have had it for some time by that point – for many years, we used to laugh that she was in her own little world, without thinking any more of it. 

“Dad was an alpha male who never went to the doctors and had never been in hospital. In 2017, when he was 77, he fell and hit his head and from then on had a few falls and slurred speech. He was diagnosed with vascular dementia soon after. The doctors said there was not necessarily a connection between the initial fall and the dementia – perhaps it was coincidental timing, but I’m not sure. Dad’s vascular dementia affected his cognitive ability but the symptoms were mainly physical. His brain would tell his legs to get up and walk across the room, but the message would not get there fast enough and so he would fall. Eventually, he lost his speech and then control of his throat. In 2019, Dad had to go into a care home and be fed a liquid diet for the last three months of his life. 

“As their only child, I had to work out what to do at each step (along with my hugely supportive husband), and tackled the situation as a series of problems to be solved. The first was trying to keep them both safely in their own home, where they were comfortable and familiar. I joined an online group, which was very helpful, and found lots of information about tools and gadgets on various websites (see below) for details.

“Both my parents were fitted with ‘fall alarms’, and we installed cameras so I could keep an eye on them and explain to the paramedics exactly what had happened when one of them had a fall. We also put alarms on the external doors, so I knew when one of them had left the house. We bought dementia music boxes (you just remove the lid and music plays – no buttons need to be pressed), easy-to-use dementia mobile phones and a dementia clock with a large analogue face. We put notes around the house with reminders for them and information so the paramedics would immediately grasp the situation when they were called.

“Next, we made the difficult decision to bring in carers – my Dad, the alpha, responded far better to having an external professional look after his personal needs than me or other family members. 

“In the end, Dad had to move to a care home and Mum followed him there soon after. It was the only safe option at that stage – she had given us a bad shock when she left the house at 2.30am and made for the bus stop. When we got her home, she said she was going to buy some slippers. ‘At 2.30 in the morning, Mum?’ ‘Yes, it’s very quiet at this time’. 

“The people at the home were amazing with them both; moving them there was hard but definitely the right thing to do. But the whole process was a huge emotional strain. I made the decision to put my career on hold as I could not really be more than functional in my job. My parents were my priority. I really needed the support of my managers, and I will always be thankful they provided it. 

“So many of us will have similar experiences – it really helps to reach out to people who have been through it. There are lots of tools to help you care for a loved one with dementia, but communication and the support of colleagues and friends is essential.” 

 

 

For help and advice, visit: https://www.dementiauk.org.uk; https://www.alzheimers.org.uk/; https://age.co.uk

Help & Info – Employers Support for Carers | Carers Trust





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