This is the story of Sarah from the Carefree break for an Invisible Army exhibition.
Discover more about the full exhibition in our Carers Week 2025 round-up.
The last few months have been extremely challenging for Sarah. She cares for her parents, Jean who is 89 and Peter, 91. During a recent hospital stay, Peter was told he is now at the end of his life. "My dad's been very ill," Sarah explains. "They found the valve in his heart is too tight. He's deteriorated since being in hospital and had lots of infections - it's been a very emotional time. My mum's also been in and out of hospital over the last month with health concerns. She's been very confused - I think her dementia is progressing."
Along with caring for her parents, Sarah has suddenly felt thrust into thinking about what they want when they die. They have not made a will and have only shared passing comments about cremation or burial, and location. Sarah has her own thoughts and beliefs, but she knows these may differ from her parents'. She wants to meet their hopes but feels unable to ask. "We've had enough tears recently," she says. "I don't want to upset them more."
Jean and Peter were married in 1953. "Jean was on one side of the cafe, me on the other," recalls Peter. "We locked eyes and that was it: love at first sight. We were married a year later. The taxi we'd booked to take us to our wedding didn't arrive, so we had to take the bus!"
It can take Sarah up to three hours to get to her parents' house on public transport. "I don't drive," she explained. "Last year I took 580 buses to care for them." Because their health has been worse recently, she's currently staying in the spare room. "I haven't slept properly in 14 weeks, with mum and dad going in and out of hospital and meeting their care needs," she says. "My head pounds constantly and my eyes hurt. The other day I just had to leave and walk for an hour in the pouring rain, crying. I wish I could be by the sea - that's where I feel at peace with myself."
Sarah moved Jean and Peter's beds into the spare room to make room for hospital beds. In the hospital beds, though, they can't be close together like they were before. "My dad's sight is poor, and he used to hold mum's hand in bed to know she was there," Sarah says sadly "It's hard seeing the small loss of comforts like holding hands in bed that gave them reassurance and closeness".
"It's like Piccadilly Circus here sometimes," she says. "Loads of people coming and going: care workers, nurses, other professionals. Then suddenly no one comes." She suddenly remembers something: "Did they take a urine sample today, mum? I don't think they did." "Maybe they'll be back tomorrow," Jean replies. "Goodness I hope not: it's Saturday tomorrow. Hopefully our day off," laughs Sarah. Although she is grateful when support is of- fered, she is finding that most of her interactions with professionals are just assessments. "Yesterday we had a social worker visit," she says. "Both me and mum were in tears, but she never deviated from the assessment questions." At the end she was asked what she felt her parents needed. "I answered with some suggestions, and they were all immediately turned down. I asked: what's the point? It feels like they're just leaving us all here to die."
"The social worker asked, 'Why are you changing and washing your mum and dad? That's the role of the care workers'," shares Sarah. "I had to laugh, I think because I was getting angry. My parents need support when they need it, not according to a fixed rota. I can't leave them sitting in discomfort for hours until the next care worker gets there"." When a care worker is changing him, Peter asks to hold Sarah's hands, in tears. After a lifetime of independence, he finds it very hard to have to rely on professionals to change him. Jean and Peter have care workers come in four times per day. "Professionals act like they're giving you the earth as this is their maximum package of care," says Sarah, "but in reality, it only covers around two hours of the day. It also feels like the more you do as a family member, the more professionals expect you to continue to do."
"What am I supposed to do?" Sarah asks. "Mum has said a few times recently, 'Just shoot us both' and 'Peter and I could hold hands and jump out the window.' What do I say to that? How do I show I care and meet their needs and requests when what they both want is to die?"
In Jean and Peter's living room there is a glass cabinet full of treasures. "These are all gifts from over the years," Jean shares. She laughs. "We call it The Museum." Each item in The Museum has a story. As Sarah gets out small glass animals her late sister made, Jean smiles and said, "Sarah has beautiful eyes - a lovely colour." "She's a real wonder," says Peter. Their home is also filled with photo frames and albums, while showing each one they share many beautiful stories of Sarah's sons and Jean and Peters great grandchildren.
Her mum is having a better day today, but Sarah explains that she's been getting more spiteful towards her over the past few weeks. "I understand and know it's not my mum; it's her illness - but it still hurts," says Sarah. "Mum said to me yesterday, 'You'd think this was your flat the way you're acting: why are you even staying here?' I know it comes from a place of pain and exhaustion, but it's devastating to hear when she doesn't understand everything I'm doing and the fact that I've put my whole life on hold to support them both, but it's so hard not being appreciated. I don't want to be living with my parents, I'm 56 with my own home and children. I've also always wanted a tortoise and recently bought one and now I can't spend any time with him. "I feel like I've lost my life and don't know when I'll get it back. But wishing for change feels wrong - because it would mean losing my parents."." Jean wears a bracelet Sarah gave her which reads, 'Always my Mum, Forever my Friend." "I used to have the mick taken out of me when I was a child for being so close to my mum," says Sarah. "When I was out, I'd always give her a call to chat. I never wanted to resent my mum, but the challenges of caring for her dementia are beginning to make me feel that way."
Peter recalls, "I have family who live in Bristol, we used to take our motorbikes there. I owned many bikes; Jean and I were the first motorbike and side car riders in our town."
"I feel like I've disappeared into the role of carer, I don't know what my own needs are anymore or what feeling 'normal' would even look like." Sarah explains. "I have aged so much in my face over the last few weeks: my friends are starting to get really worried about me. I can feel so alone with it all. I just need people to understand how difficult being a carer is." Something that does support Sarah through the more difficult times is music, especially Bob Marley. "My music is what gets me through," she says. "It shows a little piece of who I am."
Sarah was offered a break at a hotel by us. She invites a friend who has been a crucial support to her throughout her caring journey. Together they make full use of the space and time they have there - watching a theatre show, going for afternoon tea, shopping and finishing off with a spa treatment. Sarah glows. Her friend says, "Sarah seems completely different from just a few weeks ago when she hadn't been able to leave her parents side - or even their house for a full month. It's wonderful to see her relax and start to find herself again." Sarah replies, "this glow is a bit of a front, I'm putting on a smile so we can enjoy this break, but really, I am feeling exhausted and very emotional. But I am enjoying my break very much. Such mixed feelings.
Catch up with the Carefree break for an Invisible Army exhibition
To read the rest of the stories and discover everything Carefree did during Carers Week 2025, check out our summary below!
(All photo + case study credit: ©Invisible Army)
