There’s more to a person than dementia | Stuart’s story…

Content

The week, 15-20 May 2017, marks Dementia Awareness Week, a topic which Haelo’s Programme Manager Stuart Clough has become rather passionate about over the last couple of years.

I’d like to tell you a short story about a man living well with dementia.

I first met Pete 12 years ago. At the time of meeting he was a 74 year old man who was very youthful for his age. He regularly exercised, drove competently and enjoyed everyday life with his wife, Margaret. Pete was a very sociable person, a real man’s man – I knew this as I was one of the people who he enjoyed sharing his stories with; he enjoyed telling me about his days in engineering, growing up in his beloved Edinburgh and more still, we shared a passion for football which left us talking for hours.

As a keen fitness fanatic and the more mobile of him and Margaret, Pete would complete a one hour round trip walking to his local village to get a paper on a daily basis. Whilst he was down there he would always make time to pop into the bank to have a chat with the girls before nipping into the bookies to see his friends and you guessed it…talk football!

In 2012, Margaret sadly passed away and although Pete missed her dearly, he continued to live a good life and simply looked to his two daughters and son for help where it was needed. It wasn’t until late 2014 when the family began to notice subtle changes to Pete’s behaviour; at times he seemed to become a little forgetful, a little less organised and became less fixated with football. All the same, he was now 84 years old and to some degree it was simply put down to ‘getting old’.

As the summer of 2015 approached, Pete, still feeling the youthful ’68 year old’ that he regularly described himself as and decided to attend a family wedding in Mallorca. It was during this holiday when Pete’s family were with him 24/7 that the uncharacteristic behaviours of Pete became more evident and more regular than previously thought…one afternoon as he was visiting some family members at a nearby hotel, he fell towards the edge of the swimming pool as he waving to get their attention. It seemed that Pete had disregarded his surroundings and hadn’t taken note of what was in front and to the side of him. Two days later, he fell down half a flight of stairs as he similarly attempted to speak with someone across an outdoor terrace. Pete, being Pete, stood up graciously and told everyone he’d had worse injuries on the football pitch and for no-one to worry. This was a close call and alarm bells began to ring – if he was having incidents this regularly and putting on a brave face what was happening on a daily basis when family weren’t there?! On his return, an appointment with his GP was made. One thing led to another and he was soon diagnosed with Alzheimer’s disease.

Along with the diagnosis, the family became educated as to the signs and symptoms of Alzheimer’s. It was then, when the jigsaw pieces began to fit into place; Pete’s conversations in recent months had become very repetitive, always the same topics and very much about what happened in the past. We now know this was because he was having difficulty in remembering short term events, so instead he would discuss stories that were ingrained in his memory; his past. The incidents in Mallorca were easier to make sense as dementia can affect a person’s perception of spatial awareness. As we learned more and more about Alzheimer’s we recognised more and more of these symptoms in Pete’s behaviour.

Despite all of this, what did this diagnosis actually change? Well, not a lot. Pete was still extremely able, very fit and loved his family. The only thing that changed was the support he required to continue living the life he was accustomed to. Pete was well in himself physically, the family just wanted to ensure they put a plan in place to prevent any serious issues from occurring – Pete had lost all interest in preparing any fresh food, therefore his family would take it in turns to prepare home cooked food and drop this in on a daily basis. On days where someone was unable to visit they arranged for a male carer to visit for an hour to ensure he was eating an evening meal.

Structure was important to Pete; liking to know what he was doing in the week ahead so that he felt prepared. Without encouragement, Pete found his own solution to his failing short term memory…a diary! This was a revelation as it helped him to see what was ahead for the day, who was popping round, but also a chance for him to record some of his thoughts and feelings on the day. He didn’t mind people having a browse; again, he took comfort in people knowing what he had been up to. Pete also agreed to wear a watch monitor which had a direct link through to a care agency, just in case he needed some assistance in an emergency.

Over the year or so which followed, Pete began to lose confidence as he was struggling to remember basic concepts; the value of money, directions to the village and home and he lost interest in football completely, which was very sad. Throughout this time, the family didn’t change his routine, they just ensured he had support when he was completing the things he enjoyed; still travelling to Scotland to see his relatives, still attending the annual Scarecrow Festival which he looked forward to, going to the village to get his paper, he still went to get his favourite meal of fish and chips from the chippy, the list goes on!

Earlier this year, Pete had some complications with his heart and was admitted to the local hospital. Whilst he battled against this, he sadly passed away surrounded by his family on Wednesday 15th March.

I wanted to tell you about Pete, my wife’s grandfather, because he was proof that just because he had dementia, it doesn’t mean you can’t live a normal and enjoyable life. People can and do live well with dementia, they just need a little help. Pete could still do all the things he used to do before he was diagnosed, he was the same man, it’s just the level of support which he required to complete those things that changed.

If I can ask one thing of you, please take the time to become more aware, become a Dementia Friend and share Pete’s story.

Dementia Friends training takes about an hour of your life and will give you the awareness that will make all the difference to a person living with dementia. For instance, times when you are in a queue at the supermarket and that person is struggling to pay but have all the money they need; they could be living with dementia, but you’ll know this because you are aware.

Thanks for reading this, I appreciate your time.

Visit Dementia Friends to find a training session near you or become a Dementia Friend online.

Unite against dementia #DAW17

What do you think?

Leave a comment below

Your e-mail address will not be published. Required fields are marked *

2 Comments

  1. This is an excellent blog Stuart for but also a challenge for Dementia United http://www.dementiaunited.net and Andy Burnham to take in Greater Manchester to help the majority of people like Pete who need much more support than they are getting now to remain active and contributing members of their family and local community

  2. Firstly, thank you very much for your kind comments, I am pleased that you enjoyed reading Pete’s story.

    In respect of the challenges Greater Manchester face, I think that, whilst it is one which won’t be easy, having a transformation programme such as Dementia United shows that the intent is most certainly there to make change. A key to this is to provide a more joined up approach which will allow people who live well with dementia and the opportunities to continue to do the things which they enjoy, in a way which supports them appropriately.

    I look forward to seeing developments and also hearing more stories of those who live with dementia, enjoying the things which are important to them.