The DAA thanks Maureen and Mike and Unforgettable.org for allowing us to re-post their story
Maureen Pike’s husband Mike was diagnosed with Alzheimer’s and Posterior Cortical Atrophy (PCA) at the age of 59. Here Maureen explains how they’re both continuing to enjoy life.
How was Mike diagnosed?
It was quite a long process. Mike had always looked after himself and led a healthy, active lifestyle. The only time he’d ever been ill was as a teenager when he had an eye condition (his eye turned in) and needed an operation to correct it.
Then in his early fifties he started experiencing eye sight issues again. Given his history, we attended numerous appointments with eye specialists who scanned him and said his eyesight was fine. But then Mike started to forget things like information he had just been given or he would lose his sense of direction. Eventually he stopped driving because he was struggling to see the lines or boundaries on the road.
Eventually when he was 57 our GP ran tests for dementia, but the results were ‘satisfactory’ and we were sent away. I wasn’t convinced by the test results and felt sure there was more to it. Mike’s memory continued to deteriorate and so we went back to our GP and were eventually referred to the Rice Clinic in Bath where we were both interviewed. It was a relief for me to feel my perspective was being taken into account.
In 2014, when Mike was 59, he was diagnosed with early onset Alzheimer’s and Posterior Cortical Atrophy (PCA) a rare form of dementia which is known to cause vision problems. Fortunately for us, the consultant we saw was actually a PCA specialist so he was able to give us good information. He said that Mike probably should have received his diagnosis six or seven years previously as my instincts had told me.
What happened after the diagnosis?
Immediately after the diagnosis Mike was both gutted and relieved to know what was happening. He was obviously worried about how it would change his life but he was also comforted to have a proper diagnosis, as he had worried he was going mad. At first, I couldn’t really take it all in so I chose to take a practical approach to it as I had no experience of dementia and had no idea what to expect. I decided we would just have to manage.
How did other people react?
Speaking to Mike one-to-one you wouldn’t really know there is anything wrong – the symptoms are more obvious in day-to-day living. Our friends and family have mostly been supportive, although we have noticed that some people avoid us now – we think, perhaps, they don’t know what to say.
What were the main challenges you faced and when did they happen?
Mike was able to continue to work for a while, his employers were supportive and adapted his role but eventually he retired. His worst experience was when he got lost while out walking on his own. He was walking along the canal towpath in Bath and wasn’t sure if he was heading in the right direction to get back to Bath, so he asked someone who said ‘yes he was’ but as Mike turned to thank them he ended up turning himself around and heading back the way he’d come. He turned a few times before someone else realised what he’d done and managed to get him back on track towards home.
However, he doesn’t really go out on his own anymore and the biggest challenge is finding ways for him to keep active. He used to be a very active person and now he stays indoors much more, particularly as he can get confused in our own garden, although I am usually there to help. It feels hard that we can’t always do what we want to do and our choices are affected, but despite those things we have a positive attitude.
We like to get away as often as possible with friends and family, as it gives us both something to look forward to and is a change from the normal every day pressures. We both do well when we’re out and about, not cooped up inside. Being outdoors boosts both our wellbeing, keeps our minds active and relieves boredom as well.
Have any services made a difference?
Yes, the Alzheimer’s Society is setting up a ‘buddy’ volunteer who will come and chat to Mike and take him out regularly. Mike’s eyesight problems mean that we get help from RNIB, we go to a support group and have just bought some sloping plates and drinking glasses with thumb indents which really help him.
I’m also part of a carer support group on Facebook. One of our best finds has been an organization called Dementia Adventure which arranges holidays for people with dementia and their families. I heard about it on Facebook and liked the sound of it, though if I’m honest I did think, ‘we don’t really need help, we can cope.’
However, we decided to try a holiday with them – our philosophy is to try anything once and if we don’t like it we won’t do it again! We went to Ireby in the Lake District and had a wonderful time. We were thoroughly relaxed and enjoyed every minute. It was basically a normal holiday with back up if you need it. For example, when I needed to pack to return home Mike went for a walk around the village with a Dementia Adventure team member – I even had some time to sit and read, which was unheard of.
We’ve just had another holiday with them and find they really benefit both of us. Mike is more relaxed when we’re away, his memory seems to improve, too, and he remembers parts of his holidays in a way he doesn’t remember other things.
Have any products or gadgets made life a little easier?
Yes, Mike has a talking watch which tells him the day, date and time, which he finds helpful. He used to have a simple Doro mobile phone with only four buttons on it and a GPS tracker which was also useful because it prevented him getting lost and he could easily contact someone if he was out. However he’s sadly unable to go out alone anymore so he has no need of it.
Has your experience of living with someone with dementia changed your perception of it?
Yes, before Mike’s diagnosis I didn’t really think about dementia or take it particularly seriously – when my mum was alive we would joke with her when she repeated herself. Now I have much more awareness of what it means and how much it affects. I also have a lot more patience, not only with Mike, but with other people who are living with dementia.
What lessons have you learnt and what advice would you pass on to other families?
Get out and do as much as you can while you can – and enjoy it! Live in the here and now and try not to worry too much about the future.
For more information about Dementia Adventure go to www.dementiaadventure.co.uk