“Dad was aged 67 when he passed away due to chronic obstructive pulmonary disease. His condition had been misdiagnosed for two years as asthma, it was only 18 months before he died that he was correctly diagnosed,” Mandy explains.
“The effects of his illness meant that he went from being a very active, full time working man, an independent breadwinner, to someone who was dependent on myself and my mum - in a matter of just 18 months.”
As Mandy’s mum had also worked full time, her dad used to share the housework and cooking. But as his illness progressed, he could do less and less, until the point where Mandy’s mum had to give up work to look after him. He could only walk very short distances, and also needed help with bathing.
“Losing his identity and independence was very hard for dad, who found he could no longer help and would often become very emotional. Mum also found it stressful. Having given up her own work, they both became quite isolated.
“Mum went from being an employee, a wife, a friend, to being a carer, and she lost her role as a wife as well.”
The illness and need for 24 hour oxygen meant that separate bedrooms were preferable, so they lost a lot of their intimacy as a couple.
Mandy did her best to provide a break for her mum by making herself available to help whenever possible. Both mum and dad needed space from each other at some points. So whether it was hospital appointments, cleaning or cooking, Mandy tried to carve out time to help, whilst managing her own job and a family with teenagers at home.
“It impacted on all of us,” she explains. “If I had the knowledge I have now, it would have been so different.”
“I would have sorted some external help to help manage the situation. We didn’t know the sort of help we could get. If we had spoken to an occupational therapist, they would have come and assessed his needs, and provided the support and equipment dad needed. We thought we were doing the right thing and went to the Red Cross to source equipment that enabled dad to maintain his independence.”
“It was a minefield trying to understand the benefits that were available when mum gave up work to care for dad. We didn’t know what we were entitled to. It made the whole process more stressful.”
Having since trained as an occupational therapist, Mandy is now aware of the policies and legislation that is in place to help.
“The signposting is getting better, particularly through the use of the internet, and there is a wealth of information, but it’s not always clear what is someone’s personal opinion and what is medical fact. Recognised sites will have the appropriate links on them to signpost you in the right direction."
“From mum’s point of view, we didn’t know at the time about carer’s support and support groups for carers. It would have been good for her to be able to talk to other people in the same situation who could understand where she was coming from.”
“Similarly, respite care would have given both mum and dad a break, although in the current climate, a lot of services have tighter criteria on what can and can’t be offered. With progressive diseases, you have to reach a certain stage before you are entitled to that support.”
Mandy would advise anyone in a similar situation to investigate all the options.
“You can make informed choices if you know what is available, and make decisions about what you want to happen. You can plan for the future. If you have access to a specialist nurse or GP, you can get a specific direction. Ask questions, there is no such thing as a stupid question, especially when it concerns your health.”
Since her husband’s death, Mandy’s mum has started to make up for lost time and embrace her life. She is an active widow and grandmother, has a part time voluntary job and even puts in some hours at her old job at a maternity unit.
“She still misses dad. He had worked so hard for his retirement and he never got to enjoy it” concludes Mandy.