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Talking about dementia
By Denise Wallin | Monday 04 September 2017
My mum can no longer do anything for herself. She needs someone to get her dressed and out of bed, feed her, remind her to swallow when she’s eating or drinking, brush her teeth, wash her hair, change her and push her wheelchair.
Mum is 65-years-old and is in the advanced stages of frontotemporal dementia (FTD). She was diagnosed at just 59.
This is the reality of dementia.
Denise (centre) with her mum, Barbara, and dad, Tony.
FTD is a rare form of dementia which can affect a person’s behaviour and personality, as well as their memory. There is no cure and we don’t know why my mum has it. She has lived in a care home for the last year as she is too ill to be at home with my dad and their house isn’t suitable for her needs.
I believe that, as a society, we need to talk about dementia and be honest about it. When I talk to friends or colleagues about my mum’s dementia, there are some questions which always come up…
How old is she?
People expect those with dementia to be old. I recently started a new job and when I mentioned about my mum in the office, I walked out and overheard one of my colleagues say to another, “that’s the same age as me!” in shocked tones.
It isn’t a condition which only affects old people. I feel so frustrated every time I see the stock pictures of little old ladies which accompany dementia stories on the news. Meanwhile, there are around 40,000 people in the UK with early-onset dementia, meaning they were diagnosed while under the age of 65.
Does she know who you are?
Almost everyone asks me this question at some point and I really do understand why. 
It’s what sets dementia apart from most other horrible conditions – seeing your loved one forget you. But, as upsetting as it is, I can list many things that have been in some ways worse than Mum not recognising me.
These include being shouted and sworn at by her, receiving phone calls from the dementia day centre threatening that she would have to leave if her behaviour didn’t improve, seeing my children unsettled when she paced around, her hiding faeces around the house after she became incontinent, hearing her shouting “I hate you” to my dad when all he had done all day was look after her.
Many people think dementia is just about memory loss, but it’s not.
How’s your mum, is she getting any better?
It’s nice for people ask how my mum is but unfortunately, there’s not much to say. My stock answer these days is a very dull ‘still with us’ as I’m not sure what else I can reply.
The dementia journey can be a long one and it is all downhill. My mum isn’t going to get better.
Is it hereditary?
Hereditary forms of dementia are extremely rare, and we’re fairly confident Mum isn’t one of these cases. She’s just unlucky. A lot of research still needs to be done into working out why people get dementia. Eventually I hope research will also find a way to develop treatments to slow it down and ultimately cure it.
The only people who can really change how dementia is viewed is us, the families of those who are affected. We need to start being more honest about our experiences and telling anyone who will listen, not just others going through it. The more awareness and understanding there is about dementia, the more funds we’ll hopefully see going towards research so we can bring an end to this horrible condition.
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About the author
Denise Wallin
Denise's mum, Barbara, was diagnosed with early-onset frontotemporal dementia at just 59. She lives in a care home with support from Denise and her dad, Tony.
My dad is an ex professional football player and was diagnosed in 2014. I noticed his memory not so sharp as it used to be and spoke o my mum who agreed. I went to our local doctor and explained my concerns and right away she made an appointment at the hospital to see a consultant. Brain scans were done and memory tests carried out. When we got the results shocked was an understatement. My dad was in his late seventy’s. Gradually he has went down hill with memory problems, forgetting what he has been doing, thinking he was out and arguing about his tablets. He thinks he takes them 4 times a day when he only gets once in the morning and once at night. There has been so many arguments regarding the tablets it’s unreal. He gets quite aggressive sometimes aswell and says some horrible things but I know that not my dad it’s the disease that’s making him like that. The hospital have said that he may have got this due to him heading a football (old leather pigs skin type). He still does his word search and we keep him doing his sudoku. In the last couple of weeks I have noticed that he has went downhill quite a lot and I have spoke to the doctor and she said maybe he had a urine infection, but sadly no urine infection, just dad getting worse. It breaks my heart to see him the way he is. On Christmas day we went out to a restaurant to have lunch he was sitting in the corner not really knowing where he was, he got up to the toilet and couldn’t find our table which was right infront of him. We were getting help from the local hospital and they put him on sertraline which has made no difference to him. I don’t go out anymore incase he walks out the front door and we always make sure someone is in the house with him. My biggest fear is that he won’t know who I am and that scares me alot as it must be horrible to be in a body with your mind like that. It is a very cruel disease and wouldnt wish it on my worse enemy.
Denise I’m so sorry to learn about your Mum. My husband died of Alzheimer’s and I was fortunate I was able to care for him at home. We don’t have any family so I did everything for him, including washing his body before they took him away. I know FTD is slightly different, one of my girlfriend’s husband’s died of it. However it is still a devastating form of dementia, and it is only by raising funds and public awareness can we hope to find a cure. In the hope of finding an eventual cure, I donated my husband’s brain for research, and now doing everything in my power to help others. You might want to check out the website and blog I’ve set up in honor of my husband. alzheimersfundraiserart.com Know you are in my thoughts and prayers.
❤
Thank you, Denise Wallin for this very informative article. I am sure that lots of people will understand better this dreadful illness. None of us can be sure we’ll never be hit by it, one way or another! I have! My elder sister suffered from it and seeing her not recognising one of her grandchildren, asking her “who are you?” was a heartbreak for us all. I couldn’t stand the fact that my, once, bright, intelligent, active and cheerful sister had gone into that stage. As hard as it may have been for her, it was much worse for us all, because our hope was that she wasn’t aware of it. We were the ones who suffered!
Yes, awareness about dementia is capital for me… More research into this horrible condition is needed. I hope this will happen. With all my heart… My thoughts are with you.
Started our journey about a year ago with my mum. Blogging about it has helped me but i also think it helps our friends as they can get an insight into what we are going through http://www.gtblog.co.uk
My mom also has dementia. There are so many things I wouldn’t have understood until I was going through it. The worst is waiting to see what’s next.
So much of what you’ve said rings true with my experiences with my own mother and I will adopt your response of ‘still with us’ as an honest answer to a tricky question. I’ve been stumped for a reply at times. Increasing awareness that dementia isn’t only about losing memory is really important. Thank you for your blog.
I totally agree with you that if the general public knew how awful dementia of anykind was they would donate more to help us crack this awful disease. If it’s at all possible. Thank you for posting your experiences.
I agree with you Hellen…my mum also has Alzheimer’s,it started gradually forgetting little things, latter she becomes aggressive…there was even a time my mum got lost…it was really difficult for us bt at last we found her…my mum was 53 yrs old when she was diagnosed with Alzheimer’s now 63yrs old…she couldn’t recognize any of her family..the truth is the only support she gets is from her children but her husband have fail her,,,he don’t cater for her all the burden is on the children. Am the last daughter of my mum,a graduate but i can work because of my mum’s condition…she’s in her last stage of Alzheimer’s, Alzheimer’s is indeed the awful disease.