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Steve & Nik

We met in 1996 and have been married for 16 years. Steve was diagnosed with FTD (fronto temporal dementia).

The trigger that made us go to a doctor was when on a group weekend away in 2005, 2 of our friends independently asked if Steve was OK having noticed him be a little different, and struggling with things a bit. I had confided in a friend that I thought he was acting a little strange and having memory and speech problems.

Diagnosis

At the doctor's, he performed a mini mental test (MMSE, mini mental state examination) and didn't seem too concerned but was happy to refer on to the hospital for more detailed testing on the basis of his results. He said it wasn't a perfect score but likely nothing to worry about. But then doctors have that as their default setting don't they, saying things are likely nothing. Anyway, the testing at the hospital took place over many months and included hours of cognitive tests, and scans including EEG, ECG, CT and the one we had to wait longest for was the most useful one, the MRI head scan.

The psychometric tests showed he struggled with many things, and the doctor then and there asked Steve to stop driving due to these test results. I was a bit relieved about that as I thought driving was becoming more difficult for him, but it wasn't too easy for Steve. He took it in his time honoured good manner though, as with most things. We didn't see the neurologist for a final diagnosis until months after most of this testing, but before reciving the MRI results. In fact, when we saw him he thought we already knew the diagnosis and casually mentioned dementia mid sentence when we had to stop him and ask if that meant he had it. Steve reminded me actually, that the doctor was sorry to have made this error and we had a little time going over the diagnosis, which was initially FTD. After the MRI results he later wrote to us and changed it to vascular dementia (VD) and the psychologist prescribed Aricept which although is only licensed for Alzheimer's (AD), is widely thought to also benefit VD sufferers. However since a subsequent MRI scan the diagnosis has reverted to FTD since the vascular damage remained largely unchanged, but there was some brain shrinkage more like FTD.

Symptoms

I started keeping a list of examples of strange things, or things I though at least 'might' be due to whatever the problem was, knowing that diagnosis of anything would likely need my input. I admit dementia had certainly crossed my mind right from the beginning, although of course didn't seem too likely. But then I also thought 'what else could it be'?

Examples I had recorded included: left fridge door open, left the milk top off the bottle when putting away in the fridge, feeling stressed, unable to write well eg spelling incorrectly and not able to write many words at one time, sometimes puts watch on upside down, difficult to put some clothes on the right way (eg jumper back-to-front), found money hard to recognise eg values and what they meant, numbers generally a problem eg unable to dial a telephone number, deafness appeared to increase but I think it was confusion about what was said rather than not hearing it, couldn't see things that were in front of him eg couldn't find a cream that was in it's usual place, could not take a phone message and either remember what was said to pass on verbally or write it down either, a regular general point is he often 'argues black is white' which could be about anything that is irrefutable (like how to spell my daughter's name), increased frustration, forgets to do normal things such as brush teeth and other associated daily tasks re personal care, can forget to eat breakfast when used to always get up and get this straight away, used a fork to put butter on toast once, now unable to read (re poor concentration) which just reduced gradually from reading in bed eg every night, sometimes moody with no seeming reason for change when normally was always steady and OK, difficulty coping in groups of people eg socially, difficulty making choices eg from a menu, made a cheese and pickle sandwich without the cheese (and didn't notice when eating), conversation a little stilted, doesn't know his age and is always surprised when I tell him.

Daily Life

Steve was unable to work from quite early on due to these practical difficulties, but despite this, remained largely 'himself', which was what I was afraid of changing the most. I know this may well follow, but even now he's very much in late stages, he is still 'in there'. I think this was the secret to our managability whilst still at home - that we both accepted the situation more or less from the word go. Don't get me wrong, we were no saints - we could both lose our temper unjustly, but we mostly managed not to and just remember that it's the illness that's making the problem, and so it can't be helped. Now he is in a nursing home, and the time we spend together is more quality because he loves seeing me, and we still appreciate each other and can have a laugh on a very basic level. I could not cope with the increased nursing needs he had developed, and also, some behavioural difficulties, so took the necessary decision when I knew the time was right for both of us. He needed 24hr care, and I am only 1 person. I never thought it could be possible that this decision would be best, but I know it is. The best of a bad lot, but necessary, and it does help us maintain some quality time together without all the practical hardships. I visit him frequently, and for several hours, because that's what works best for both of us. We have made his bedroom like a bedsit so have our own space to be together and watch TV for example. But I also take him out for a cuppa, before he gets too tired. I oversee his care to ensure his needs are met to the best of my ability, and the nursing home staff are like our 2nd family.

I had to reduce my working hours to part time to care for Steve whilst he was still at home since he couldn't be on his own at all and he had carers for when I wasn't there. It was very hard to juggle work and home life with running the house on my own, and I had a 17 year old daughter so was effectively a single parent too. Nor am I very fit myself. I received Direct Payments to pay for care for him which took a while to get set up but made a big difference to my coping with things, and more importantly, his quality of life. He was much better having people care for him 1-2-1 than going into an unsuitable daycare option that mostly exist for older people.

Evening Post Article 9 September 2008 (454kb PDF file)

Radio Nottingham interview 23/09/08 10mins
(right click this link then "save target as", or, click to play now but may take a minute to upload)

Daily Mirror Friday 18 January 2013
Click here: Daily Mirror Article 18 January 2013

BBC Radio Nottingham Tuesday 5 February 2013, HOLD SHIFT KEY and click here to listen: BBC Radio Nottingham 5 Feb 2013

Nottingham Post 30 April 2013 there was a feature on Working Age Dementia which included our story: Nottingham Post 300413

BBC Radio Nottingham Tuesday 14 January 2014, our story again, but also mentions Dementia Friends. HOLD SHIFT KEY and click here to listen: BBC Radio Nottingham 14 Jan 2014

BBC Radio Nottingham 6 March 2014, about Dementia Friends. HOLD SHIFT KEY and click here to listen: BBC Radio Nottingham 6 March 2014

BBC Radio Nottingham 20 May 2014. HOLD SHIFT KEY and click here to listen: BBC Radio Nottingham 20 May 2014

BBC Radio Nottingham 16 October 2014. HOLD SHIFT KEY and click here to listen: BBC Radio Nottingham 16 October 2014

BBC Radio Nottingham 5 April 2016 on caring. HOLD SHIFT KEY and click here to listen: BBC Radio Nottingham 5 April 2016

BBC Radio Nottingham 12 June 2016 on the first Dementia Friendly Church in Nottingham. HOLD SHIFT KEY and click here to listen: BBC Radio Nottingham 12 June 2016

BBC Radio Nottingham 23 August 2016 on dementia care experiences. HOLD SHIFT KEY and click here to listen: BBC Radio Nottingham 23 August 2016


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