Sue was married to her husband Terry for 40 years. In the later years of his life, Terry suffered from vascular dementia and Parkinson’s disease. During this time, Sue was not only his loving wife but also his full-time carer.
Caring for someone with dementia can be incredibly challenging and heart-breaking. This was certainly the case for Sue at times. She supported Terry with getting washed, dressed and ready every morning and at bedtime. She was there for him at all hours.
“I was often woken up several times during the night. Caring can be isolating and hard, even if you have family around to help, they can’t be available 24/7.” said Sue.
“If anyone asks for my advice caring for someone with Parkinson’s disease, I will always say to be patient and calm - treat them like they used to be, even though they may find it difficult to express themselves. They may get frustrated, but they do understand and they do feel the same emotions.”
She describes how the hardest part of her caring role was the exhaustion not only from frequent nightly wake-ups, but also from manually helping Terry to and from his stand aid.
“It was so draining, both emotionally and physically,” recalls Sue. “But the joy of having your loved one must never be discounted - every day is a blessing, it’s just important to try and carve out the time to have little breaks yourself, even it’s just the odd hour here and there.”
Sue described how the bottom fell out of her world when Terry sadly passed away in early 2020, just two months before she lost her mother. Today, Sue still dedicates time to supporting her elderly brother. “I think it’s in my nature to care.” explains Sue.
Sue first heard about The Carers’ Centre at the time when she first started to care for Terry. With few support networks close to hand, she decided to reach out for help. From that moment on, Sue has became a regular on the wellbeing activities organised by the centre which give her some much-needed respite in a fun, supportive environment.
“There’s always someone you can talk to at The Carers’ Centre and there’s such a wide range of activities and breaks that help with your own wellbeing. We all have respect for each other due to our caring roles and have something in common. It’s like a little family. When you need help, don’t be afraid to ask - it is out there.”
Although the past few years have been especially hard following the loss of Terry and her mother, the support Sue received from The Carers’ Centre and other carers she has met has helped her through some dark days.
Have you experienced a loss like Sue?
We understand how difficult and upsetting it can be when a caring role changes or ends. If your caring role has ended because the person you cared for has sadly passed away, you can still access a range of our free services and be a valued part of our caring community.
Ocean of Life
After the loss of her husband, Sue wrote a touching piece reflecting on her feelings. She has kindly shared some extracts with us...
When did I ever sit outside? I usually sit in home and hide.
I've come through a storm that I couldn't imagine now washed-up thoughts envelop every emotion.
Like the huge ocean waves ebb and tide. Never knowing the greatness of the next wave.
Be strong be brave and let the warm sun bathe that distress make you smile and be happy.
So, as I struggle to make sense of this sadness, I'll look to nature, my family my home, I'll not be alone, and I'll nurture that presence.
Thank you great sea for bringing home to me, life's beauty and greatness for all to see. Thank you life for making me, me.