Caring for someone with an undiagnosed neurological and developmental condition can present challenges. In Jean’s case, she believes her husband, the person she cares for, is on the autism spectrum. She wants to let others know that caring for someone with undiagnosed high functioning autism is more common than people may think, and that more awareness is needed to support those carers.
Jean cares for her husband who has mobility issues, as well as spinal and joint problems, and is hypersensitive to sensations. She does every household task, including cooking and shopping and on top of caring for her husband, she also checks in on her older sister with dementia. With most of her time spent caring for others, Jean often feels stressed and emotionally drained, “I try to fit it in [social life], I don’t think I’ve ever felt as overwhelmed and anxious as I do now.”
Jean’s husband’s suspected autism diagnosis presents itself in daily life, for example, his hypersensitivity to touch and sound. She shares how growing older has emphasised his diagnosis, as he suffers from depression, is often uncomfortable and certain traits have been highlighted. Autism is known to be genetic and can often be passed down within families. Jean and her husband have two grandchildren who are diagnosed with autism, which made her realise there may be a connection.
Supporting her older sister adds even more complexity to her caring role, the emotional impact of helping her leaves Jean sometimes feeling under-appreciated.
“My sister has dementia and there comes a lot of anger with it. I do have a severe anxiety state, I wake up and have panic attacks in the night.”
Jean has power of attorney over her sister, meaning it is also her responsibility to manage finances, something she has received little support with. Her role organising day-to-day care for her sister and trying to visit once a week does take time and energy.
Balancing daily life responsibilities with making time for herself can be difficult, but Jean appreciates how important trying to make time for yourself is and does her best to do the things she would like,
“One thing that’s very important to me, is that I work hard at not feeling guilt and taking a bit of time to myself.”
She occasionally takes a couple of nights away for some much needed selfcare. She also enjoys gardening; however, this has sadly been neglected for a while due to her busy caring schedule. Jean expresses her gratitude to her son and daughter who visit the home when they can, which is a massive help physically and emotionally for her.
Support from Carers First has also had a positive impact on Jean’s wellbeing. After finding our services on the internet one day, she occasionally attends one of our regular dropin groups in Essex. She shares how being in the presence of other carers who understand firsthand the experiences she is going through is so helpful and that it’s a great comfort knowing that Carers First is there to turn to.
Jean’s advice to other carers would be not to let your caring role define you in a negative light, no matter what you have been through or are going through. Reclaim your life and be sure to prioritise yourself, in addition to the person you care for, “I think my caring role has changed me as a person, in a positive way. I’ve decided I’m not going to give priority to taking care of others all my life again.”
If you have a story you'd like to share, get in touch with us at commsandinvolve@carersfirst.org.uk. Click here to find out about the support we offer at Carers First.
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