What My Grandma’s Dementia Diagnosis Taught Me

Coming to terms with a dementia diagnosis in your family can be difficult. Here, Rupert Simon tells us about his grandma’s dementia journey and what her dementia diagnosis taught him.

Grandma’s Dementia Journey

When we heard Grandma and Grandad were moving to Sidmouth we were chuffed. The previous five hour journey to Morecombe was now cut to just over half an hour from our house in South Devon.

They had swapped the big place full of our childhood memories for a handsome Regency apartment directly overlooking the well-kept bowling green and the evocative sea beyond it. We would go over and see them more, particularly since we had all recently got our driving licenses.

Between her three Devon based grandchildren, despite university, they would receive a steady stream of visits in the following years.

The context of the move was not unusual. Grandma had just retired from her all consuming role as a headteacher at a Catholic primary school in the north west and they no longer needed such a big place. It was a good time to take the plunge and be nearer the grandkids.

Before long though it became clear their idyllic retirement wasn’t going to work out when my grandfather was diagnosed with Parkison’s disease – a disease which got progressively sadder as the years passed.

Caring for my grandad would come to define my grandma’s retirement. The physical and emotional toll it had on her is impossible to measure but her days were filled carrying my grandad up the stairs, taking him to appointments, along with as many trips to mass as she could squeeze in, presumably praying that despite the odds things would get better. 

Whether she wished to have my old grandfather back or whether with her ever-important faith she was resolute in accepting her new reality isn’t my place to say. Probably both.

But as a family we grappled with the same feelings a few years later as we would go and visit her in her nursing home in Exeter on the first floor dementia ward.

Coming to terms with a dementia diagnosis can be hard for all family members. But where do you start when telling the kids? We’ve written all about how to explain dementia to a child.

Coping As A Family With A Dementia Diagnosis

Yearning for my old grandmother was natural. She was physically strong, fiercely independent and a very proud lady, who we loved to talk to about issues both big and small. But the old grandma hadn’t had any peace since retiring and was suffering since her husband of over 50 years was no longer there.

Soon after grandad had died she had started showing signs that things weren’t right. These early signals of memory loss in the beginning were perhaps the most difficult part for her, being aware of it all.

Early everyday things linked to her dementia might have gone some way to providing comfort. She would leave the TV on and line up photos of family members in her living room when she went out. Those pictures which took on lives to her appeared to give her comfort and her new, altered reality wasn’t stopping her doing what needed to be done like driving the car, going for long coastal walks or locking the front door. 

Other everyday things did less in the way of providing comfort. Her ever changing mood swings (a symptom of vascular dementia) and the fallout with her own children were no doubt a result of an underlying feeling that things were slipping slowly out of control. These were the early days.

Dealing With Dementia

Then came the day when things became more official and we started using the word ‘dementia’ or ‘vascular dementia’. The day when the doctor she respected told her to her face that she had dementia, with her knowing perfectly well what that meant and how it signalled a new chapter in her life which didn’t finish with a happy ending.

The final straw for her living on her own after the dementia diagnosis came when she was found by a member of the public at five o’clock in the morning, wandering the streets with no idea where she was or where she needed to be.

That marked a turning point for my grandma and was the moment where various people and care agencies sought to best understand how her complex needs be served.

As a family, we rallied round. At first she moved in with my parents. People from the council came round and inspected my dad’s handiwork at installing handrails and alarm systems.

A welcoming dementia group brought grandma back from a day out one day saying she had been too difficult. Dealing with a parent with dementia isn’t easy. My mum knew where they were coming from. Unfortunately as her dementia progressed, it was beyond them to be able to look after her, even if it were a few hours every few weeks. 

Coping With Dementia As A Family

The truth was that grandma needed specialist dementia care. Her savings, headteacher’s pension and her apartment meant she was fortunate and could get the best care money could buy.

For a woman who puffed up her sofa cushions every time someone got up to go to the loo, it wasn’t difficult to know the sort of place she would have wanted, even if by this point she couldn’t tell you easily with words.

It was the right decision and the specialist dementia care home allowed grandma the best possible way to live out her remaining years with as much dignity as was humanly possible.

It came at a cost and it’s not nice to think that the dementia care she received would have been out of the reach of the vast majority. But it’s hardly surprising that good care costs money. The ratio of carers to patients was high and no attempt was made to skimp on things even if the argument could be made that they didn’t really appreciate it. The assumption was that they would prefer panacotta made with organic milk or freshly caught Brixham sea bass.

Caregivers we are here for you! We know that caring for a loved one and yourself in the process can be difficult. We’ve got a section dedicated to providing carers with information and support. It answers caregiving questions, and focuses on ways to avoid caregiver burnout and help you improve your wellbeing.

Things To Remember If You Love Someone With Dementia

That became the key. Never to assume you knew what they knew or didn’t know. Never to assume you knew how they felt.

We might spend hours speculating (dementia is both cruel and fascinating) but we must have tacitly decided that it was not our role to assume something so complex and ultimately unknowable as her disease.

In her final stages of dementia, Grandma found it increasingly difficult to communicate. At first, a descension into goppedly gook, which became a new language to speak even if it was superficial. As a Catholic with no Latin that I knew of this wouldn’t take much. Then words almost completely left her.

There were of course other ways to communicate. Ways which were probably easier to understand than words and certainly more profound and honest. A smile or a laugh. The way she moved her body or her eyes widened when for example you said a joke or mentioned ‘Frank’, her husband’s name.

Creating Joy For My Grandma After Her Dementia Diagnosis

The things that gave her joy when she was well never left, nor things so deeply entrenched. The fact she got to see her great grandchildren so regularly at the end was a blessing and you could see her captivated by them.

Her joy was heightened and her filter was gone but these weren’t the reactions of a madwoman, they were the feelings she’d known ever since or before she realised teaching was her calling. She didn’t need to tell you that she’d enjoyed the sherry at Christmas or that she found it annoying when you deliberately antagonised her and referred to ‘the Grim North’ but it wasn’t hard to tell what she thought in those moments.

Coming To Terms With My Grandma’s Dementia Story

The disease was difficult at the beginning, in the middle and at the end. My feeling was always that she knew a lot more than she let on and there was a certain peace for her by the end. Ultimately she was still good to be around and in the limited things she was able to do there was still a lot of joy for her.