Meera’s dementia story: ‘As long as Grandma keeps smiling, we know she is doing okay’

Ba’s (we call her Ba – Gujarati for ‘grandma’) two passions were her love of gardening and cooking, specifically cooking for loved ones. Growing up, she was a doting grandma and was devoted to her family – my grandad, her four children and their spouses, but mostly her ten grandchildren who she used to spoil endlessly.

She helped to raise my brother and I alongside my granddad whilst my parents were at work. As we lived in the same house, we spent the majority of our time together and I used to share a bedroom with Ba, further strengthening our bond. We are still extremely close and as long as she keeps smiling (she has a killer smile!) and laughing as she does to this day – I know she is doing okay.

Noticing the signs

Initially we didn’t have any awareness of Alzheimer’s. It took a few years for Ba to get a diagnosis.

At first we noticed changes in her behaviour and overall mood. She had a bubbly, charismatic character and was always the life and soul of the family, but she had started to become very angry and defensive over time and wouldn’t smile as much. She became more agitated and gradual memory loss crept in. She would start repeating her words, forget conversations that had taken place the day before or even hours earlier, and would always reminisce about memories from years ago.

My grandad (god bless his soul) taught us the true meaning of unconditional love.

Throughout Ba’s battle with Alzheimers, he treated her no differently regardless of her changing nature and showered her with continuous love and affection with which we all followed suit.

Advancing care needs

Ba is now in the advanced stages of Alzheimer’s and vascular dementia; she is 81 and developed symptoms very early on. She can no longer walk, she has a wheelchair to move within the house which she has to be lifted into and out of, and she cannot verbally communicate and speak. We also feed her as she has lost mobility.

'Ba's underlying health is fine, but she requires around-the-clock care.'

We converted our dining room into Ba’s bedroom around 12 years ago when she fully lost the ability to walk upstairs. She has a hospital bed to assist with her movement and care, and we converted our garage into a shower room as we had no bathing facilities downstairs.

We have a social care agency that help us with bathing and personal hygiene. She has a sponge bath every morning and the agency comes in twice a day to assist. My dad and kaka (dad’s brother) place her in her wheelchair – we have a hoist to assist.

We try to keep a set routine in place, which we feel works best for her and we have made many adjustments over the years to assist with her condition. We blend her food to prevent her from choking, we ensure her meals consist of easily digestible foods and delivers sufficient nutrients, and we purify all liquids so we can then spoon-feed.

Coronavirus disruption

During the coronavirus pandemic, the social care workers have continued to come round. But there have been shortages in staff being available due to illness, attrition and other unforeseen issues.

This has led to changes and inconsistencies in call times – which has had a knock-on impact to Ba’s routine (meal times, bed time).

'The family has had to adjust to changes in Ba's care, fitting it in with working from home.'

This also throws Ba off and she sometimes sleeps during the day and then stays awake during the night.

We took Ba to our local GP surgery for her COVID vaccine – given she was high risk, she could not wait for the alternate vaccine to be administered at home which could have been 2-3 months down the line. 

This was the first time we had taken Ba outside of the house in over six years. She did have a reaction to the vaccine, so we requested the social care agency to suspend coming home until she was better and we conducted their services in the meantime. 

Seeking support

We first came across the Alzheimer’s Society eight or nine years ago. We weren’t aware of Alzheimer’s Society support when we needed it at the start of the diagnosis.

When Ba initially had the Alzheimer’s prognosis, we were focused on her symptoms and very much in the moment of what was happening to her.

I wanted to understand more about the support systems out there – the Society’s website is a great resource.

I’ve since taken part in fundraising events (Elf Day, Memory walks, Trek26), events organised through my workplace and multiple research studies over the years through the website. I signed up to be a Dementia Friend and I want to become a Dementia Friends Champion too.

When my grandma started showing initial symptoms, people would often ask ‘what’s wrong with her’, ‘why is she acting strangely and out of character’? Dementia was (and still is) frowned upon in the Asian community. There wasn’t much awareness at the time and unfortunately there is a stigma associated with mental health.

'There is now greater awareness as you hear about dementia more in the media. There's more targeted communication in Black, Asian and Minority Ethnic communities, but more still needs to be done.'

It’s great that there are resources available out there. However, I have found a lot of them theoretical and more factual rather than practical help and tips on living with dementia. We need more stories on what it means if you are going through it personally or caring for a loved one.

This is something I would like to raise more awareness of and how important having a support network is. There is not enough support out there for carers and the Government needs to do more to support families affected, given how prevalent Alzheimer’s is.