Every day, every hour is different
Read Clare’s one year on update
No one understands how traumatic it is caring for someone living with dementia unless you’ve experienced it. You’re losing the person you love along the way. You can’t explain it to the outside world.
Dementia is not a straightforward illness – it’s brash and selfish. Every day, every hour is different. I do my absolute best for Mam in every circumstance, but it never feels good enough. Just when I feel like I’m getting the hang of something and I’ve got some strategies, something else goes wrong. It’s like having to be a detective.
We felt on our own
Mam was diagnosed with vascular dementia following a cardiac arrest five years ago. My twins were just four weeks old at the time. We’d suspected something wasn’t right with her, but never considered that it could be dementia.
We had very little support when the diagnosis came, and felt on our own as a family. Filling out forms and chasing healthcare professionals is the last thing you need, but it’s the first thing you have to do to get any help. It caused extra stress and worry, especially as there were constant delays.
Our whole family lives with dementia
Our whole family lives with dementia. It’s been tough on me, my dad, my brother, my twins – all of us.
When your family is living with dementia, your whole world becomes insular. Mam went from going to parties and doing the flowers at church to not leaving the house. She has never understood her diagnosis. Nobody saw her decline or what we were going through as a family – it was all behind closed doors. Usually when someone is unwell, everyone is there to offer support. But with dementia, everyone disappears.
While Mam was still living at home, Dad cared for her 24/7. His whole life was put on hold. He couldn’t even go to the shops. Mam is type 1 diabetic which is incredibly complicated with dementia. She was having hypos (episodes of dangerously low blood sugar) all over the place and Dad had to monitor her throughout the night. He was in lockdown long before the Covid-19 pandemic.
The Admiral Nurse Dementia Helpline kept me going
By the time we heard about Dementia UK, Mam was in the later stages of dementia, but I’ve called the dementia specialist Admiral Nurses on the Helpline many times since, when things have felt really desperate.
They helped me to tackle specific issues like putting us in touch with the Admiral Nurse in our local hospital after Mam was admitted, transitioning her into a care home and applying for funding for her care fees. They have given me that extra bit of support to keep going during this devastating illness.
Having no support is horrendous
My advice to anyone living with dementia is to keep talking to your friends and family. Try to be open about how difficult it is. And keep asking for help – whether on the Helpline or in person, Admiral Nurses are a lifeline.
I’m taking part in the ‘We live with dementia’ campaign because I know that having no support is horrendous. There is a lack of awareness of the help available from Dementia UK and it makes such a difference to speak to a dementia specialist who really understands what you’re going through. No family should have to go through dementia alone.
An update one year on
Shortly after the campaign launch in January 2024, I had lots of comments from friends and family, who had spotted me in bus stops and on billboards across the UK. It’s so positive that the campaign is starting conversations and creating awareness.
As for our own journey, early 2024 was marked by feelings of constant stress and apprehension. Every time Mam’s care home called, we would feel fear that something had happened. In April, she had two seizures but stabilised after each one. A few weeks later however, we got a call to say she’d had a major seizure and was on end of life support.
Her final days were emotional, peaceful, musical, prayerful as well as being incredibly tough. Her priest gave her the last rites, we prayed, we spoke to her, comforted her, played lots of music and took turns to have short rest breaks. It rained heavily that whole weekend. She took her last breath at lunchtime on Sunday 28th April, 2024 with Dad, my brother and I by her side. The next few days, the sun shone with hardly a cloud in the sky.
I always felt guilty for the four years Mam was in care. When unable to visit, I’d constantly worry about how she was faring without one of us there, despite the brilliant care she was given. After she died, many of the staff queued up to pay their respects, many of them in tears. They had treated Mam like she was their own Mother – I will be forever grateful to those carers and staff for everything they did for her.
I felt very lost in those early weeks after Mam died. I took some time off work. The pain of losing her felt incredibly final. Yes we are relieved she isn’t suffering, but we also just miss her incredibly.
I don’t feel like our dementia journey has ended – I do think I can use Mam’s illness, journey and our experience to help others. I’m certain that’s what she would have wanted.
Clare on a recent holiday with her husband and two children
