A carer has spoken about looking after her husband as part of National Carers Week (June 6-12) – a campaign which salutes unsung heroes who selflessly devote their time to friends or family who are older, ill or have a disability.
Alison Bulmer, from Helsby, has been a carer to her husband Paul, 57, since 2012 when, at the age of 53, he was diagnosed with Posterior Cortical Atrophy (PCA) - a rare variant of Alzheimer’s which afflicted best selling author, the late Sir Terry Pratchett.
PCA is a progressive degenerative condition involving the loss and dysfunction of brain cells particularly at the back of the brain.
Whereas Alzheimer’s is most commonly associated with deterioration in memory, individuals with PCA typically have a well-preserved long-term memory but instead show a decline in visual processing.
Since diagnosis, Paul and Alison’s lives have changed dramatically and it’s been tough for their daughters Grace, 27, and Lorna, 24.
Both have had to give up work; Paul was a high flying IT consultant for a London-based global firm and Alison, 56, had to retire early as an English teacher for West Cheshire College working in Handbridge and Ellesmere Port.
Paul’s visual spatial awareness and coordination is now significantly compromised meaning he can no longer drive, cycle or go out alone due to an inability to judge depth, distance and speed of traffic. Steps and escalators are a big obstacle.
A life-long runner, he has now sadly had to give that up too as he can’t manage even with a guide because of sheer mental concentration required after too many incidents of running into trees and falling into ditches in the past.
But he continues to love music with an eclectic taste that ranges from techno to rock as well as audio books, some ironically written by Sir Terry Pratchett, and TV comedies like Black Adder and Would I Lie to You? but complicated plot lines are out of the question.
However, the disease is entering a particularly cruel phase affecting his short term memory and speech and just generally slowing him up in everything he does. And Paul is acutely aware of his own decline which he finds depressing.
"On our last holiday we went to Northumberland and took a walk on the beach," explained Alison. "He could pick out a worm cast in the sand but he couldn't see the boat heading towards us, coming onto the beach."
Alison agreed to open her heart during Carers Week, a national campaign supported by NHS West Cheshire Clinical Commissioning Group, which highlights the challenges carers like Alison face and recognises the contribution they make to their communities.
She explained that the condition is difficult to diagnose. In Paul’s case it was confirmed within 10 months, which is relatively quick, but the diagnosis put her in ‘a very lonely place’.
“I would find myself crying in the middle of a shop or whilst driving, in the shower or anywhere that I was on my own,” she said, explaining that difficult conversations had to take place about the implications for the future.
Now, four years on, the couple are still coming to terms with Paul’s condition and the impact it continues to have.
Alison said: “From the start there was no signposting to services or help – perhaps because Paul was so young at the point of diagnosis. The Alzheimer’s Society was not regarded as applicable and it was all down to me.
“Luckily I found the UCL (University College London) PCA support group. It was a relief to be able to talk to people who understood PCA but I still had to get my head around so many other things. It was overwhelming.
“Even now I find that I am constantly adjusting to our changed lifestyle. Each day is a reminder of what Paul can no longer do, as his world and mine contracts sharply.
“Our children have struggled to deal with the diagnosis too. Our youngest daughter transferred to a university nearer to home to be nearer her sister and long-term friends.”
People often don’t regard themselves as carers, more as someone who simply helps to support and look after a family member or friend.
Alison continued: “I still regard myself as Paul’s wife, not caregiver. In the early days of diagnosis I reacted quite negatively to being referred to as his carer – it didn’t fit or feel right.
“However, over time, I have become acutely aware of the responsibility. I have to organise everything, deal with everything and communicate for him more and more as his speech becomes increasingly compromised.”
Alison, who also supports her 80-year-old mother, said: “One of the hardest things to do is keep a smile on your face - learning to live without a piece of Paul every day, watching him struggle and seeing the inevitable decline, but knowing that a cure may not be so far away.
“I find it almost impossible to switch off because I am thinking about how something will affect Paul.”
Despite the difficulty of her caring role, she acknowledges there are personal achievements at times.
“I have become a lot more patient,” she said, “Because Paul’s pace at doing everything is slow. I try not to do too much for him, but he needs more help these days. I am a stronger person, and determined to give him the best possible care but also the opportunity to enjoy some quality of life.
“Carers can start to breathe when the person they are caring for has a meaningful life. A meaningful life for Paul would be to enjoy an activity that he valued and felt engaged in, to have someone to listen to. He needs to feel valued. If he is happy and kept occupied, I would be able to relax more and, as a result, he would be less dependent on me.”
New support group for North West
A recent positive development is that a North West PCA support group has just been set up, which has so far held two meetings and may be opened up to families affected by young onset dementia.
Asked about the future, Alison said: “Four years on, I now realise that I will not be able to physically do everything for Paul 24/7. However, his wish is to remain at home, so I hope that when I need it, I will be able to source additional care to help me out.
”In the meantime, I will continue to raise awareness about this condition by speaking at key conferences on behalf of Paul because I feel that there is still a stigma attached to Alzheimer’s and similar diseases and we really need to overcome that.”
Three-quarters of carers say their community does not understand or value their caring role. The focus for Carers Week is to build communities in which carers are better supported. You can read more by visiting the website or follow @WestCheshireCCG.
Click here for more information about the UCLPCA support group. For details about North West support group meetings contact dementia specialist nurse Andy Tysoe: Andy.Tysoe@cheshirewestandchester.gov.uk