A delayed diagnosis of dementia – is it too late?

When we returned to England from New Zealand last March, I noticed a significant change in my dad. His memory was poor, and his capacity for engaging with others was nowhere as near as it had been when we’d previously seen him 12 months before. His eyesight wasn’t too good either, but he insisted on continuing to drive.

After Barry and I experienced a hair-raising car journey from their home in Ombersley to Droitwich, I swore I’d never go in a car with him again – my dad that is, not Barry! My fear was that he would not only kill himself and my mum, but take out a few others along the way. A few months later and I’d persuaded him of the merits of discontinuing, though only once his doctor had advised against it too.

He loved the independence of driving, and it was very challenging for him to give that up.

He had a number of other challenges, which you’d expect at 93 years old. However, he’d always been fit and active, playing squash and tennis avidly for most of his life. In recent years however, after being asked to leave the local tennis club in 2007 because he was purportedly ‘slowing them down’, he’d lost interest in exercise. Walking was something he enjoyed when he could hike in the Lake District, or Scotland, but not just local walks in the countryside.

He’s hardly ever been unwell, and has never taken medication long-term. I reckon his heart is as ‘strong as an ox’ as they saying goes.

I wasn’t sure what services were available to help dad, and mum, to enable them to continue to live together safely.

Long story shortened …

Twenty months later and it’s taken an incredible amount of perseverance and fortitude to discover what they’re entitled to – and to finally get a diagnosis of vascular dementia and Alzheimer’s disease.

After things came to a head in May this year, we finally received some real support at home through Social Services – who were amazing. Through them, the Older Person’s Mental Health Team eventually became involved, and four months later, after a scan to discount any sinister goings-on in dad’s brain, a Consultant Psychiatrist visited last week and confirmed why his personality has changed so much.

I didn’t take any notes while she was chatting, imagining there’d be a follow up letter to dad and us. Asking about this she said that wouldn’t be possible, Worcester NHS Trust have a strict confidentiality policy whereby they can only write to the person’s GP with client information. How ridiculous is that? I despair. The PALS there may be getting a letter from me in the not too distant future … It’s Trust dependant I’m informed, as to whether they reveal all to the individual concerned. Hmm, interesting.

We’re now waiting for a community psychiatric nurse to visit and consider which medication to give dad, which may help to stop any further progress.

How sad is it, that should this happen, if we’d been speedier getting to this stage some of the damage already done could have been reversed? I guess if we’d foreseen this, we could’ve considered a private consultation. That’s the benefit of hindsight …

What else could I have done or be doing differently are questions I frequently ask. I’m a qualified nurse, and have had to be quite proactive to get anywhere – how do people cope with little or no medical knowledge I wonder?

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Visiting Barry in Kidderminster on Sunday

I’ve spent the last two long weekends with dad, and will be back there for a couple of days next week.

When I returned to Areandare last week, I realised how much Barry was getting used to me not being on board, when he entertained me with a medley of Pink Floyd and The Who!

4 Comments on “A delayed diagnosis of dementia – is it too late?

  1. Hi Sandra, Be aware there is nothing you could have done that would have halted the progression of your dad’s Alzheimer’s – there is a drug that, if taken early enough, can slow it down, but not stop it. And early diagnosis is hampered by the person’s denial of any problem and our inability as their child to confront and override their denial and independence. Been there, done that, with my father in law – your description of stopping your dad from driving was very familiar, by the way. However your success didn’t entail any damage to life or property, whereas David’s dad mistook the accelerator for the brake and reversed at speed out through the closed garage door, across the right-angled driveway, over the foot high raised garden, through the 6′ fence and only stopped when he was tangled in the neighbour’s heavy duty rotary clothesline that he’d knocked out of its concrete moorings. Even then, his overriding concern was about getting a hire car while his was repaired … As the Tui ads say: Yeah, right!)
    A book that we found very helpful was ‘Contented Dementia’ by Oliver James – it’s available online (Amazon for Kindle) as well as in print (Book Depository or any good bookshop near you, as they say). It made a significant difference to David in being with (as well as working with/coping with) his dad.
    The most important thing though was taking care of David’s mum, who as John’s primary carer, was worn to a frazzle and could not get that debating with/correcting him was pointless and frustrating to them both. Her diminishing health was the precipitating factor for getting John into care.
    So, no beating yourself up. You are clearly doing a wonderful job in very trying circumstances.
    Cheers, Marilyn (nb Waka Huia)

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    • Hi Marilyn

      Thank you so much for stopping by and commenting. I was toying with whether posting about dad’s diagnosis was the ‘right’ thing to do, I know lots of readers will wonder how things are and of course I’ve not gone into too much detail.

      Yes I understand re the medication, thank you for that clarification. I guess what I meant was what a shame that it wasn’t diagnosed sooner to slow it down more, he’s fading away to a shadow of his former self, so sad to witness.

      OMG re the damage your father-in-law did! The saving grace is that no-one was injured, I feel certain that had I not stopped him it’s likely someone would’ve been.

      I’ll look for that book and get it on my Kindle – thank you 😉

      And yes again, mum is his main carer. I went last weekend so she could have a break at my sister’s house for a couple of nights. It is really challenging for her. They have carers twice a day and one of us staying every weekend. However we’re looking into a half way option, with supported housing, and I’m visiting somewhere on Friday. It may be one solution. Neither of them want the care home option yet – and our experience of dad going in for respite in June was so awful it’s put us off. But it may be inevitable, especially once he doesn’t know who any of us are 😦

      Thank you for your reassurance, it’s appreciated.
      x

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      • You’re welcome, Sandra. Neither of David’s parents wanted the care home option, but accepted it when David privately asked each of them the question ‘What do you want for each other?’ Their responses were that they wanted the best for each other. The conversation among the three of them then opened up to what would the best for each other look like, and John’s answer was keeping them Mary healthy and happy. Mary’s answer was having John looked after properly as she didn’t feel she could do that anymore. John was then able to take on the notion of going into care where there were a number of people to look after him, and where Mary could visit every day without the stress of being his carer. (Unspoken but critical was the need to rebuild their relationship which had taken a dive through frustration at Mary not understanding the disease and taking the slights personally and John not knowing what he’d said to make her cross, her tiredness leading to falls …)
        Cheers, Marilyn

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