“I wished I’d known about my rights as a carer”

SARAH WEIR OBE, 58, IS CEO OF DESIGN COUNCIL AND WAS AN ALZHEIMER’S SOCIETY TRUSTEE.

SHE LIVES IN LONDON. BOTH SARAH’S MOTHER AND FATHER HAD DEMENTIA. WHEN MY FATHER WAS DIAGNOSED WITH DEMENTIA I DIDN’T KNOW ANYTHING ABOUT IT. HE AND MY MOTHER WERE DIVORCED AND HE LIVED ALONE BUT FRIENDS OF HIS RANG ME TO SAY HE’D TOLD THEM HE WAS HOMELESS, BUT HE WASN’T (WHICH WAS THE FIRST SIGN THAT ALL WAS NOT WELL). I WENT TO SEE HIM IN DEVON AND HIS HOUSE WAS IN CHAOS. I WENT TO THE DOCTOR WITH HIM AND HE WAS ADMITTED TO A PSYCHIATRIC ASSESSMENT UNIT FOR THREE MONTHS. MY SISTER AND I MOVED HIM TO A HOME IN SUFFOLK, WHERE WE BOTH HAVE COTTAGES, SO COULD VISIT. HE LIVED THERE FOR FOUR YEARS BEFORE HE DIED AGED 80, FIVE YEARS AGO.

FIVE YEARS AFTER HE WAS DIAGNOSED I WAS HAVING SUPPER

WITH MY MOTHER AND SHE WAS USING LOTS OF ODD NON SEQUITURS. I THOUGHT, “OH NO, NOT AGAIN.” I SPOKE TO MY STEPFATHER WHO BROKE DOWN IN TEARS AND SAID HE COULDN’T COPE, AND SHE GOT A DIAGNOSIS NOT LONG AFTER THAT. MY STEPFATHER LOOKED AFTER HER BUT WHEN HE DIED, SUDDENLY, WE HAD CARERS VISITING HER AT HOME. BUT THAT WAS VERY STRESSFUL SO MY SISTER AND I FOUND A CARE HOME IN SUFFOLK WHERE SHE STAYED UNTIL SHE DIED AGED 80.

FIND OUT YOUR RIGHTS AS A CARER

I WOULD HAVE MADE SURE MY FATHER WENT TO A DIFFERENT ASSESSMENT CENTRE THAN THE ONE HE WAS INITIALLY IN, BUT I DIDN’T KNOW I COULD MOVE HIM.

APPLY FOR ATTENDANCE ALLOWANCE IF SOMEONE NEEDS HELP AT HOME OR AT A CARE HOME, THEY ARE ELIGIBLE. YOU HAVE TO FILL OUT LOTS OF FORMS,

BUT IT CAN REALLY HELP FINANCIALLY.

FIND RECREATIONAL THINGS TO DO WITH YOUR PARENT I TOOK MUM TO A MUSIC SESSION AND SHE JOINED IN, AND SANG, AND WAS ANIMATED IN A WAY I HADN’T SEEN HER FOR MONTHS. >>