Both Marie and her husband John gave up their jobs within months of Amanda being born in 1989. They knew her diagnosis of Dravets Syndrome meant she would need full time care, and they have continued looking after her for the past 33 years.
Dravets Syndrome is an exceedingly rare, catastrophic neurology disorder with seizures often difficult to control and resistant to medication. Treatment options are limited, and the constant care needed for someone living with this condition has an enormous impact on the carer and cared for.
When John, 63, was diagnosed with Prostate Cancer in November 2021 and her 80-year-old Mum has a heart attack in December 2021 Marie became a carer to her daughter husband and mum.
She is supported with a self-directed support package in place which allows her to employ Personal Assistants along with some hours with their local Care Provider Glasgow East End Community Carers. Marie gets some respite when her older daughter comes to stays for them to get away for a few overnights. The respite on offer is not suitable for their daughter as Marie feels there is insufficient choice of services.
A keen photographer
When she has a few hours to herself, you will find Marie with a camera in hand. Her photographs have been used in the local paper. And her other hobbies are gardening and fundraising, creating awareness of Dravets Syndrome.
She joins a friendly circle of carers once a fortnight to join other parents who are looking after their adult sons or daughters.
“The benefit of being with other carers who ‘Just Get It ‘brings a sense of belonging, understanding, and emotional support within the group. Being cared for by the friendly cheery Hub staff gives me the opportunity to relax in a different environment, it is a much-needed distraction from my everyday routine of chasing up never ending appointments, phone calls etc.”
I will continue to look after my daughter for as long as I physically can. It is so important to have time out from my often demanding, stressful, sleep deprived caring role.
The staff give emotional support alongside the many other programs on offer, like training, activities, outings, benefit maximising, apply for individual grants that will benefit a carer and their family. I have been able to enjoy the many benefits the Carers Hub have to offer.
“I worry about the cost of living as everything goes up. My daughter gets disability benefits and must pay a care charge each week towards her package from this. We use her mobility adapted van a lot to go out and about that benefits our daughter quality of life and overall, the family’s wellbeing. The cost of fuel has recently made us cut down on a few of our further away trips.
“When you receive benefits, they are means tested on what you are expected to be able to live on, however when you have additional complex care needs you must pay a contribution towards your package from you benefit. We have always had to be careful and budget our finance due to giving up our jobs to look after our daughter full time to give her the best possible outcome her illness dictates.
“When winter approaches we will have concerns about putting the heating on. As Amanda is less mobile, she gets cold quickly and we have the heating on more than normal. We also must run her seizure monitors 24/7 to keep an eye on her because of seizures especially during the night.”
Marie’s family say:
- Don't dwell on what your loved ones will not achieve.
- Celebrate what they can do at their own pace.
- Live in the moment and enjoy the simple thing in life.