Caring for Mum: A Journey Through Dementia
When dementia enters your life, everything changes overnight. What begins as small lapses in memory soon transforms into a reality that reshapes family roles, routines, and emotions. This is a story—a daughter’s journey of love, resilience, and learning to navigate the unknown.
My Caring Role
When Mum lived at home, my caring responsibilities were hands-on: washing her hair, giving her baths, cooking, cleaning, managing medication, and accompanying her to hospital appointments. I made sure she was safe and comfortable. Today, Mum resides in a care home, and while I no longer handle daily tasks like bathing, I visit her three to four times a week. I still encourage her to eat and attend appointments with her. Caring doesn’t stop—it just changes.
Everything shifted the day Mum was diagnosed with dementia. She had always been my support system, helping with my children while I worked. Suddenly, that stopped. Overnight, I went from daughter to carer, and life as I knew it was gone. I worried constantly about Mum’s decline. Supporting Dad—who is over 80 and isolated—added to the strain. With three children of my own, I felt physically and mentally drained. It was relentless.
Finding care that respected Mum’s cultural background was a challenge. Agency carers didn’t understand her love for South Asian food or Urdu music. Communication was hard—she often reverted to Urdu. Eventually, we found an independent carer from our community, but it wasn’t easy. We paid privately because I didn’t know what help was available. Even then, nights were sleepless, worrying about what might happen between visits. It felt like running two households.
People often ask about Dad, but he’s elderly and never did household chores. My husband was supportive, but his full-time job meant long hours away. I didn’t want to leave work—it was a break from the pressures and financially necessary. Balancing roles as a mum, wife, and carer was exhausting.
At first, I didn’t know where to turn. A friend suggested contacting the council for an assessment—without her advice, I’d have been lost. Eventually, Mum’s condition worsened, and after a mental health facility stay, she moved into a care home. Even then, financial guidance was unclear. What happens to Mum’s property? What about Dad who still lives there? These questions haunted me. Clearer information from social care would have made a world of difference. Professionals mean well, but they don’t always grasp the real impact on families.
Friends kept me afloat checking in, visiting for coffee, recommending care homes. Online resources like the CQC website and Facebook groups helped too. When Mum moved into care, I finally slept without worrying about stoves or missed medication. But the guilt lingered.
People think they understand, but unless you’ve lived it—the worry, the exhaustion—you don’t truly know. Professionals need to include carers in decisions. At first, I needed Mum’s permission for everything, even when she couldn’t give it. Over time, things fell into place, but it was a steep learning curve.
I visit once or twice a week. Her mood changes—sometimes calm, sometimes agitated. It takes time for her to recognise me. Right now, she knows who I am, and we share laughs. But I know one day she may not. Despite her condition, Mum remains grateful for life. We laugh, eat, and pray together. Her gratitude reminds me to count my blessings. If she can be thankful, what excuse do we have?
Dementia is isolating. There’s no clear timeline. People lose interest, and the person fades away day by day. On days Mum doesn’t recognise me, I still feel fortunate to be with her. I’ve learned to cherish moments and not feel so lonely.
You grieve for who they were while holding on to who remains. It’s suffocating. Sometimes grief turns to anger—anger at the disease, at the loss, at what it stole from my children. Over time, I’ve learned to let go of guilt, but it wasn’t easy.
When Mum was admitted for over a week, things became harder. Care home staff don’t attend hospital stays, so I had to be there feeding her, keeping her clean, making sure she felt cared for. Hospital staff were kind but busy. Communication was poor. Missing doctors’ rounds meant chasing updates constantly. Even at discharge, I struggled to speak to the consultant. Better communication would have made a huge difference.
Despite the pain, there are glimmers of joy. On Mum’s birthday, I baked her favourite recipes and brought flowers. When she saw me, she cried and called my name. For a moment, it felt like the Mum I knew.
Caring for a loved one with dementia is a journey of love, loss, and resilience. It’s exhausting, isolating, and overwhelming—but it’s also filled with moments of connection and hope. If you’re a carer, know this: you’re not alone. Share your story, seek support, and remember to care for yourself too.
What This Tells Us
This story highlights the urgent need for:
- Better emotional support for carers – Caring is not just physical; it’s deeply emotional.
- Clear communication from care homes – Families need reassurance and updates.
- Accessible technology – Video calls helped, but they’re not easy for people with dementia.
At Healthwatch, we’re listening. We have spoken to carers across the borough to understand their experiences, needs, and the challenges they face. Our report brings together these voices through a series of case studies, highlighting both best practice and areas where improvements are needed to better support carers.