Dementia Care: Tracey Shorthouse, Living with Early Onset Dementia
How did you realise that you had early onset dementia?
I was a community nurse, working as part of a district nursing team, and I remember first noticing that my memory wasn’t quite as it should be when I was doing some complicated calculations for drugs one day. I was 44 years old. I began to be unable to write down things on the graphs for patients, such as the person’s date of birth and NHS number, which I put down to tiredness at the time.
That year, 2014, I also I fell about 30 times, mainly trips over nothing. I did wonder if this was medical, but then thought I was probably being a klutz. As a nurse, if a patient complained of this I would investigate further immediately, but because it happened to me…
Things escalated in 2015 when my speech began to slur, and I was continually stumbling. In May 2015, I was admitted to the hospital for a week. I had been experiencing pins and needles, and I actually thought I had Multiple Sclerosis (MS); the doctors thought I had a brain tumour, and the hospital thought I had had a stroke.
The MRI and CT showed nothing wrong with my brain – so, in the end, the symptoms were put down to depression and stress. I went back to work, but in the first week back I was being shown how to use a new peg feeder for a patient - the sort of thing I would get shown once and then know how to do it – and I couldn’t remember by the end of the week.
My colleague noted, “There is something wrong with you, as you usually pick things up quickly”. I went back to the doctor who thought I was wasting his time, and I thought “What am I going to do now?” So I went over his head and saw a locum doctor and asked to be referred to a memory clinic.
I failed the first memory test in June 2015, and failed the second in August. By October I saw the consultant, and he said thought that I had Alzheimer’s disease, but to rule out everything else I had about 20 different blood tests and a SPECT MRI that checks your brainwaves. By the end of the year, I was told that I had Early Onset of Alzheimer’s Disease and a variant of Posterior Cortical Atrophy (PCA), which is seen as part of Alzheimer’s.
How did the diagnosis affect you?
I was relieved, to be honest. Finally, someone believed me, and I also felt relieved that I hadn’t got MS! I know I wouldn’t cope with that as I am a very active person, but I could cope with dementia, I thought at the time. In my nursing career, I was used to looking after people with end-stage dementia – and there is dementia in my family, but at no point in the process did I suspect I had early onset dementia. After the relief though came a period of being upset. I went through a grieving process, which is normal – you are, after all, losing part of yourself.
How has your life changed since diagnosis?
I’ve never been one to be negative, and I tend to look towards what I can do. I am still able-bodied and I can remember things to a point. I’d forgotten how to use a computer by the time I was diagnosed, but I have relearned that – and I’ve realised as time has gone on that if I push myself I can relearn other skills.
Things I can’t do anymore I have adapted to - or stopped doing such as driving as the PCA part of dementia alters my perception. But I take buses and that is okay for now. I also retired from nursing last May and had a Critical Health Policy which thankfully paid off my mortgage. At the time, I started writing a collection of poems which has now been published, called “I am Still Me”.
I had thought “what can I do to stimulate my brain” – and had originally started writing short stories, but found that hard with my dementia. So, I tried poems, and this allowed me to get my feelings out. The poems aren’t just about dementia though – dementia doesn’t define me, it’s just part of who I am. They also include other things about me like my love of nature and gardening and my cat. I also write a blog on Facebook called ‘I’m Still Me’ it’s more of an open diary, again sometimes I write about my dementia, sometimes my walks, meetings etc.
Do people realise you have dementia, given your age? How open are you about it?
I lost a lot of friends when I was first diagnosed who thought I was lying or pulling their leg about having dementia. One even said that her Nan had dementia and she remembered a lot more than I did, so I can’t have it. But I’ve made new friends since and met so many lovely people in the past two years. They accept dementia as part of me, I am very open about it – my family and friends know that I have it and I never hide it when I am out and about or meeting new people.
It is unhealthy to hide things and I am a very forthright person. The only issue is that when people hear you have dementia sometimes they tend to start speaking very slowly! Or they say, “You poor thing” I don’t do pity, so I soon put them straight.
What are the challenges of your dementia and how do you deal with them?
I don’t get thirsty or hungry with my dementia, which is tricky. In the early days, I got a lot of urinary tract infections as a result of not being properly hydrated. Then I devised a chart, which then got replaced by an alarm. But now the chart has come back and its simple. I just tick each time I have a drink, so it’s quite good to see the overall amount I do drink.
Now I eat first thing in the morning and again at 6 pm, so I know that I am getting two meals a day at least. I also walk around 1-3 miles every day. When you’re young you don’t want to be walking with a stick, but sometimes you have to, to keep independent.
I’ll get my stick out if I get wobbly now, whereas I didn’t in the beginning. I was also more cautious early on – if I was going on a bus I would have to sit near the bell in case I had a problem - and on the train, I would have to sit somewhere where I could see where I was going.
Now I’m more relaxed. Last year I did a 26km charity walk in Brighton and had problems so on the way back I said to the guard, “I’ve got dementia. I am fine but can you help if I have a problem or get confused?” He helped me to change trains when I needed to. I like to do things independently as much as I can, but sometimes you have to bite the bullet and ask for help.
How do you look at the future as your condition progresses?
I don’t even worry about what might happen because it hasn’t happened yet. Every day is a blessing. And I am busy! My occupational therapist says I do too much and should rest more. But you have to grab opportunities with both hands, as they might not come again.
I have to put some days off in my calendar these days. Last year I spoke to the local police about the fact that dementia affects all ages, not just the elderly and how they can help. I recently spoke at the Alzheimer’s Show 2017 as part of the Dementia Engagement and Empowerment Project (DEEP) and I am also involved with the SUNShiners group, which promotes positivity in dementia, YoungDementia UK and The Angela Project, which is working to try and change the way people with young onset dementia are diagnosed.
Some of my time now is also taken up with giving talks to those who have recently been diagnosed with dementia. When I do, I always stress that people believe that a diagnosis means they can’t do things. But this is an excuse – because you can. During my nursing career, I used to see patients give up so easily and it really stuck in my mind. When I was diagnosed I didn’t want to be like that.
Practically speaking, the main thing at the moment is that my stairs are steep, and I am having perception problems in the bathroom so I am having equipment to help keep me independent. In life, you should definitely do whatever you need to do to keep that. I always say that life is a blessing, to make the most of when we can.
For more information on early onset dementia, visit:
The SUNshiners is part of DEEP (The Dementia Engagement and Empowerment Project).
The Angela Project is a UCL project that aims to improve diagnosis and post-diagnostic support for younger people living with dementia and their caregivers
‘I am Still Me’ by Tracey Shorthouse is available on Amazon and in branches of Waterstones.
by Anna, Features Editor
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