Sharing the highs and lows of caring for a parent who has dementia on Instagram

I’m a senior support worker helping people with their wellbeing. I also care for my mum Gwendolyn who has Alzheimer’s disease, though we call her Gwen. 

Mum went straight into nursing after school and did this for 50 years – it’s what she always wanted to do. 

She had lots of different nursing roles, at one point becoming a midwife. Osteoarthritis forced her to leave, though she later became a practice nurse. 

Bubbly personality

To the people that she knew and loved, Mum was bubbly. She had a good sense of humour and would do anything for anyone. 

Sometimes we were like chalk and cheese. We used to do amateur dramatics together and we’d often need separate dressing rooms due to our bickering! 

Forgetting things

I remember we owed Mum some money after my wedding and we delivered it in person, as it was several hundred pounds. 

But a few days later she called me to ask when I would pay her back. It was as if it had been completely erased from her memory. 

She started forgetting other things, like one day she forgot to let the dog out for us. It was lots of little things like that. 

We went to a speech and language therapist because Mum would say ‘cat’ instead of ‘dog’ or ‘fork’ instead of ‘table’. We were then referred to the memory clinic and told she has Alzheimer’s disease. 

Complex 

I’ve come to love Mum as she is now with dementia. Because I work full time I’m not her full-time carer, but sometimes it has felt like I am. 

We’ve finally found respite care because Mum was not safe at home. 

It was complex. There was no stimulation and she started hoarding things, including food that was going off. Carer visits were inadequate. 

Gwenventures 

Mum started to lose weight rapidly, so I started taking her out every week to ensure she was getting a good meal – fish and chips being her favourite. These became our Gwen adventures or ‘Gwenventures’. 

One of the reasons why I set up @OurGwenventures on Instagram is because friends wanted to know how Mum was. They’d often ask after her and missed her presence – including at the drama group. 

I already had a messaging group with my family to keep everyone updated but Instagram made it easier to update everybody. 

Reality 

I will never not share both the good and bad bits, because people need to know how hard it can be. 

Lots of people who have been through similar situations say the posts help them feel less alone. I know Mum would want people to know how she is. 

To me, there’s absolutely no point if I can’t share the dark as well as the light, because that’s the reality of life with dementia.