Devoted couple's heart-breaking dementia story

The devoted wife of a man living with dementia has spoken of her husband’s heartbreaking Alzheimer’s descent- but also how an Age UK Sheffield centre has given them parts of their lives back.

Elisabeth Hyde has been caring non-stop for beloved husband Bernard since he was diagnosed with Alzheimer’s disease five years ago.

Her husband’s sudden decline left Elisabeth and her family shocked and home life increasingly difficult as Bernard’s condition left him increasingly reliant on his wife’s care.

Now regular visits to Age UK Sheffield’s renowned Wellbeing Centre mean Elisabeth is receiving the vital respite she craves and Bernard is being given long lost parts of his life back- piece-by-piece. 

Elisabeth said: “I met my Bernard when I moved onto the road he lived on, a few doors down. We hit it off straight away, and we married almost thirty years ago. He has five step children whom he adores, and he’s besotted with his grandchildren. We are a close knit family and meet as regularly as we can.

“Throughout his life, Bernard has had poor health, including asthma, mini strokes, an operation to correct fluid on the brain, and a heart condition which required a pacemaker.

But none of those have impacted and worried the family as much as when he was diagnosed with Alzheimer's disease. In 2012, all of a sudden he didn’t know what day it was and he couldn’t recollect things we’d just spoken about. We went to the GP and he got all of the memory questions wrong – he even thought I was the Queen as we shared the same name.

“My Bernard, the one who I used to know, has gone now, which is devastating. He’s only 79, but he can't do anything for himself and he's really clingy to me. He’s my shadow. 

“Even if I go and make a cup of tea he will tell the dog that I’ll be back soon. It is very difficult and frustrating and home life can be very hard. I'm determined to care for him myself and I am adamant that he won’t go in to residential care. I would feel like I’m letting him down. We made vows after all–‘til death do us part. Until it’s physically impossible to care for him, he’ll stay with me. 

“I often worry whether I am doing right by Bernard. When we go out, he’s not aware of what we are doing or where we are. His table manners aren’t very good – he will cut everything up with knife and fork, even a sandwich. He gets lost going to the toilet. I’m under enormous stress and sometimes lack understanding about how best to deal with his dementia. 

“We used to have six-monthly memory clinic appointments to check how Bernard's Alzheimer's was progressing, but it closed, with no alternative service offered. I was upset by this, as it was nice to be able to speak to someone face-to-face and ask for their advice. I didn’t know where I was going to turn. Then social services came to the house and told us about the Wellbeing Centre, run by Age UK Sheffield.

“At Bernard's initial visit, staff worked on generating a rapport with him to build a picture of his life story. Bernard is a quiet man and initially was anxious about being left at the centre without me. Over the course of a couple of weeks, he started to share more details about his interests, and became more comfortable and relaxed. He expressed his interest in sports, particularly football and enjoyed sharing stories about his working life as a fitter of burglar alarms. He also spoke about his love of animals and children, stating that he used to be known as "Grandad biscuit". Bernard also spoke frequently about his childhood and his parents along with his motorcycling days.

“Staff encouraged Bernard to reignite his love of DIY by getting involved in a project to renovate a dolls house which was to be donated to Norfolk Park Nursery. Bernard was thrilled at the prospect of gifting something for the children to enjoy and enthusiastically helped with sanding, painting and glossing. 

“Bernard's interests in motorcycles was explored through reminiscence with a fellow biker and images on the iPad. His passion for football was also accounted for after staff facilitated a group penalty shootout game using an indoor football set. This created a highly social atmosphere for all and showcased Bernard's knowledge and talent to the rest of the group.

“I provided photographs of Bernard's parents and his family tree, so he’s able to reminisce, and they are now displayed on the memories board, providing a focal point for conversations. These personalised activities have significantly increased his sense of purpose and happiness which is evident in his demeanour.

“For me, now I have respite – and it’s brilliant. Supporting someone with memory loss can be so hard. I get angry, then I feel guilty, but I was amazed when I first came to the Wellbeing Centre. The moment we walked in we felt at home. It's a fantastic place for Bernard and also for me to have some much needed time to myself.  I can walk in and feel absolutely desolate but there is always someone there to listen and give advice. All the lovely people who work there are so understanding and make me feel worthy again.”

Age UK Sheffield’s Wellbeing Centre is a one-stop-shop for older people and their relatives which combines a range of support services in a safe, central hub. 

For more information about attending the Wellbeing Centre, click here or email enquiries@ageuksheffield.org.uk or phone 0114 250 2850.