Faces of Caregiving – Australia
When Niall and Carol married, they knew she had Multiple Sclerosis (MS) and they thought they “knew what they were in for.”
Carol was diagnosed with MS at the age of 32 and lived with it for 38 years until she passed away at the age of 70.
She spent 20 years in a wheelchair and for the last seven years of her life, she couldn’t communicate very well and could barely move of her own accord.
During all this time, Niall lovingly cared for her and made her his number one priority.
When her mother, to whom she was very close, died, Carol’s health took a turn for the worst.
“I believe stress plays a big role in the progression of this horrible disease, so I saw my primary role as doing all I could to make Carol’s life as stress-free, happy and as comfortable as possible,” says Niall.
They loved to travel and in 1996 they had their last big trip – a three-month holiday to Europe and the UK. As she was already in a wheelchair, they found inaccessible, upstairs toilets and cobblestoned streets challenging, but they still had a fabulous time together.
Whilst Niall’s children from his first marriage helped him out on occasions with Carol, for the most part, he was her primary caregiver.
“We tried to get government assistance with carers, but the assistance was minimal, and the paid carers viewed it =more as a job rather than caring with passion, so I just took over and looked after Carol myself,” he said.
An application for funding of a specialised wheelchair was denied. The reason being because Carol lacked the ability to control the chair as it was designed with rear controls for the caregiver, so it was deemed to not improve her independence.
I think the Embracing Carers™ / Time Counts initiative sounds like a great idea. Any carer would be happy for offers of assistance, especially if they are given in a loving, thoughtful way,” says Niall. “Small things, like picking up groceries from the store, providing the odd meal and help around the home would be a godsend.
Carol described her condition as “being a prisoner in my own body.” Being unable to help yourself is very tough, but the 24/7 aspect of caring is also very difficult. Eventually, it led to Niall being admitted to hospital for exhaustion and ‘caregiver burnout’.”
Carol was then admitted to a nursing home and not allowed to return home due to the strain on Niall’s health.
“We both hated the situation and were not happy with the nursing home. My daughter and I checked out 29 nursing homes until we found one we were happy with,” says Niall. “I visited her every day and eventually they gave her palliative care until she passed away.”
Along with caring for Carol, Niall has been involved in the the Trish Foundation. Since it was founded in 2002, the Trish Foundation has raised an impressive $500,000 through charity golf days for research funds to find effective treatments and, ultimately, a cure for MS.
“In 2002, a cure for MS was an impossible dream. In 2019, it is now a realistic goal, at least for relapsing and remitting MS,” says Niall. “Obviously, it is too late for Carol, but my hope is that a cure will become a reality in the not-too-distant future. the secret of caring is sharing with love.”