Jane, aged 61, cares for her husband, David (Dave), 81, who suddenly became paralysed eight and a half years go, and now requires full-time care. Their lives changed dramatically overnight after Dave woke up paralysed due to a spinal infection, but Jane’s determination and positive outlook on life have remained strong.
It was a huge shock to both Jane and Dave when Dave’s physical health deteriorated so quickly, “everything changed overnight”, as Jane says. Whilst Dave had already retired by the time he fell ill, Jane was still working in the civil service part-time, and enjoyed the social aspect of having a job, as well as getting to help others and offering advice as a Universal Credit Account Manager. Jane chose to leave work as she knew she would have to look after Dave after he had a serious operation and needed care and support. She immediately resonated with being Dave’s carer and stepped into her caring role.
“I knew I was going to be his carer and I took it on because I believed that it was my job to do that - I couldn’t abandon him.”
Unfortunately, as is the case with many carers and the people they care for, they did not have the greatest experience dealing with medical professionals and hospital wait times. Dave had to spend two weeks at Castle Hill Hospital in Hull whilst waiting for a bed in the spinal unit at Pinderfields in Wakefield where he eventually spent three months recovering. This lead to frustrations and stress as Jane had to juggle visiting Dave, seeing to the house alterations looking after their dog at the time.
“When Dave was in hospital, every week was just a blur.”, Jane shares.
Like many carers, Jane had to seek out the information and support she needed to care for Dave. She emphasises the importance of researching and learning more about what you are entitled to as a carer.
“Don’t be scared to ask, voice your concerns or question medical professionals… You have to tell them what you need.”
Now, Jane cares for Dave full-time. As he is in a wheelchair, he requires a lot of extra support to do daily tasks, “the only thing he can really do independently is wash his face, clean his teeth, shave and eat and drink.” Jane assists with: “dressing, hoisting, bowel and bladder care – he has a colostomy bag and a catheter [which Jane changes every six weeks].” While he was able to retain some independence in things like feeding himself, Dave’s condition meant that their whole house would need adjustments so that Jane could care for him safely and comfortably.
Fortunately, Jane and Dave were able to receive some support from their local council, a £26,000 grant from West Lindsay County Council, which covered the alterations they needed to make their house safe and suitable for Dave, such as knocking down a wall to make one room, adding a hoist, hospital bed, wet-room and ramps.
During this time when a lot of changes were happening unexpectedly, Jane reveals that she felt overwhelmed at first, “I wondered will I ever do anything again, I felt trapped sometimes to be honest.”
She shares how engaging in hobbies, such as learning piano, has helped her to feel more in control, and that Dave encourages her to keep her independence and do the things she wants to, “I go out sometimes to plays, concerts, Dave never stops me doing anything…” Walking their labrador at the time greatly helped to take her mind off of things, especially when Dave was in hospital, “our dog saved my life really, walking, just to get out.”
A stable support network has helped Jane through some tough times, as she shares how her friends and family have always been there for both her and Dave.
[when talking about her friends] “They’ve really rallied around us. I go out for meals and I have a friend who will come in and look after Dave…” One of Jane’s close friends even offered to learn how to take care of Dave so that Jane could take a break here and there, something which she is extremely grateful for, “I just sat there and cried my eyes out, you don’t know what that means.”
Despite everything the couple have been through in the past eight and a half years, Jane’s strong spirit has helped her to retain a positive outlook on life, something she is thankful to have as she expresses how many carers don’t have the energy to remain positive when faced with the weight of caring, “I consider myself to be very lucky, I never let anything beat me.”
Jane’s advice to other carers who have had difficulties getting the support they need would be to advocate for yourself and learn what your rights are as a carer. Although it may seem daunting at first, advocating for yourself and the person you care for is “the best thing you can do”,and an open mind and self-determination is essential when stepping into a caring role. She shares how she first found out about Carers First whilst visiting Dave in hospital and began seeking support, “I always get the digital magazine. Caring can be a lonely place and it’s good for people to have support should they need it.”
Jane’s unwavering positivity and strength is deeply admirable. Her story highlights the importance of having a support network to help you and she acknowledges how lucky she is to have this within her personal circle. However, for many carers this is not the case and reaching out to Carers First can be the first step to receiving the support and guidance you deserve. Jane explained “Carers First does back people up in situations, which is great, it’s nice to know they’ve got your back, and are campaigning for things to support carers.”
Click here to find out about the support we offer at Carers First.
Online Help and Advice
Visit our online support section where we have provided advice and guidance on a range of relevant topics to help you in your caring role.