Living with Dementia – A Personal Story

In support of Dementia Action Week, we are incredibly privileged to share a deeply personal and inspiring story from our very own dedicated White Oaks Food Service Dietitian, Helen Ream, who has courageously chosen to open up about her own journey of living with dementia. Her story sheds light on the realities of the condition, the strength it takes to navigate each day, and the importance of compassion and understanding. We hope her story resonates with many and inspires greater awareness, empathy and action.

Having worked as a dietitian for over 30 years, I thought I understood dementia, as I had attended so many workshops and study days about the condition and even provided training about how to meet the nutritional needs of individuals living with dementia. It wasn’t until my dad was diagnosed with Alzheimer’s disease in December 2020 that I realised there was so much that I didn’t know!

We noticed dad’s symptoms in January 2020 when he couldn’t work out how to come out of the house and get on the same bus as my mum and me, as we had got on a few stops before their house. He was also very regularly putting things in the wrong cupboard, e.g., rice with the plates, cereals with the saucepans, etc. When we talked this through with mum, it was obvious she had been covering over his symptoms for months.

Due to COVID, it took until December 2020 to get the diagnosis after an ECG, brain scan and an online assessment. It was earth shattering at the assessment that dad couldn’t recall what day of the week, month or year it was, despite being very articulate. It brought it home to us that we all needed to work through this as a team.

As the disease has progressed, there have been three aspects that have been hardest. Firstly, watching the light get dimmer of the person you have known all your life, who has always been in charge and the life and soul of any party, now suddenly sits quietly in a corner of the room and generally gets ignored by everyone (as they often don’t know what to say to him).

The second most difficult part has been mum’s reaction to the grief of slowly losing him and sometimes fighting us as my brother and I have tried to support them with extra help.

Finally, as the disease progressed, my brother and I have had to become the ‘grown ups’ in our family relationship and we have tried to look after them both.

Making decisions for them meant that, for the first time, we haven’t always been able to tackle the issue as a family team. If we hadn’t provided them with extra support, the fear was that we would lose them both, as mum could have a fall or get a nasty illness due to exhaustion. Dad has now been in full time care since January 2024 and has settled there well. Mum visits four times a week, still takes him out for coffee and lunches, and has found time for herself to do things.

When it comes to nutrition, thankfully I have managed to use my knowledge to stay on top of that! Dad refuses food all the time, but if you calmly just leave something in front of him, he usually eats it, and his weight is stable as a result of that. He loves sweet foods even more than he used to. If we are sharing a big slice of cake, you can’t be polite any longer and wait before eating your own bit as it will all be gone!

His ability to chew is reduced, so he eats soft food with lots of gravy or sauce. He isn’t good at trying anything new anymore, so for him, familiar food that he has always enjoyed still works best. In the early days of his illness, he did start trying new foods, like wholemeal bread, which he had never eaten before, but that has stopped now. He uses his fingers to eat more now but can still use a fork when the food is soft.

Throughout these last years, we have tried our best to keep our sense of humour and laugh as much as we can. We have quite a dark sense of humour and have often found ourselves laughing at the events that dad’s dementia creates, like chasing him to make sure he goes into the right toilet in a cafe, making sure he doesn’t steal your drink, and helping him go down to wearing one jumper instead of three, as he still gets himself dressed in the morning.

We dig out photos and talk about happy memories, celebrating the lives we have shared together as a family. I am closer to my brother than ever, which is something I treasure. We don’t know what the next months and years will bring, but working as a cohesive team and making the most of every opportunity to have fun are the things I would tell anyone who is about to go through the same as us.

If you or anyone you know is seeking support or more information about dementia, organisations such as the Dementia UK, Alzheimer’s Society and NHS offer a wealth of resources, guidance and help for those affected by the condition.