Allison and Jim's story - Carers Week 2021
Allison Dobbs is PA to the Director of Property at Nottingham City Homes and has been working in the organisation for many years. She is also a carer to her husband, Jim.
Around three and a half years ago, Jim began to fall backwards quite regularly. But it was while on holiday just over two years ago, when he couldn’t step down off the pavement and he began to struggle to get in and out of the car, that the couple sought for help from their GP.
After months of scans, tests and visits to the hospital, Jim was finally given the diagnosis of Progressive Supranuclear Palsy (PSP). This is a rare progressive condition that can cause problems with balance, movement, vision, speech and swallowing. It is caused by an increasing number of brain cells being damaged over time.
This was a crushing blow to the couple at first, as they looked ahead to the prospect of the condition progressing and what this meant: “I sobbed of course at the time, it was a lot to take in and neither of us really knew what was to come.”
However, a couple of years down the line, Allison is still able to work full-time hours, with the support of carers and Jim’s lifeline, which she says is a constant source of reassurance: “This is just life to us now, we take every day as it comes. The lifeline gives me the peace of mind to leave Jim in the house on his own, however briefly,” she said.
“Since the COVID pandemic began, I’ve been working from home and I’m here the majority of the time, but if I do have to go out alone, I am comforted to know that he has that button to press, just in case he needs it.
“There were a couple of occasions before the pandemic where he’d pressed the alarm and the team called me straight away. I was able to just pick up my laptop and head home to make sure he was alright. I’ve even used it when I’ve been there with him to get us an ambulance. If I don’t have my phone on me, and I don’t want to leave his side, I can just press the alarm and they will call an ambulance for me.”
As a carer, Allison has said it’s been so important to her that there is support all around her. From her family, friends and her employer to the carers that visit daily, the PSP Association and the team at Hayward House; that network has been her own lifeline: “Jim is considered to be in palliative care now. Before this happened, I hadn’t understood really that it’s not just about ‘end of life’ care. The team is there to support us through the tough days, the endless decisions we have to make, and to guide us through this process as empathetically and supportively as they can.
“Even though I know that technically I am a carer, I don’t really think of myself in that way. We made vows to each other to stick together in sickness and in health, for better or worse. We have had so many fantastic times, we’ve had the better and the health, now this is our time to deal with the harder bits.
“I find myself being very pragmatic, and people sometimes seem shocked that I’m so ‘matter of fact’ about this, but I have to be. I’ve had my tears and done all that, now is the time for me to do my bit for Jim.
“I keep working because that is something that I still enjoy doing, it keeps me going and gives me an outlet – particularly over the past year, when there’s been very little else to do.”
All the support Allison and Jim have received has enabled them to plan a little for the future, and talk about Jim’s wishes. She adds: “We have filled out his Respect form, where he outlines how he wants to die, where he wants to be and what happens next. He’s even decided he wants his brain to be donated to medical science, so more research can be done into the causes and potential treatments for PSP in the future.
“I’ve got our dining room ready as the place for him to be when he’s in his final stages of the condition and I’ve covered two walls with some fantastic pictures and memories, for him to talk about when people visit.
“I’m very proud of him for how he’s handled it all, and I hope he’s proud of me too. We do it together, as we’ve always done everything.”
Allison does raise money for the PSPA (Progressive Supranuclear Palsy Association) and is a real advocate of the work they do. For more information on the condition and how you can help support research into the condition, visit the PSPA website: https://pspassociation.org.uk/