Real stories

My wife’s person-centred care has improved her life with dementia, and mine

Before her diagnosis, my wife Yvonne astonished everyone with her ability to do anything she set her mind to.

She was an amazing cook and hostess, and our house was always full of family and friends. She loved gardening and especially weeding the borders, taking pride in immaculate flower beds. There was little or nothing she couldn’t make or repair on her sewing machine. 

Early signs and adjustment

Yvonne used to happily go off to work as a bookkeeper for a local charity. She would often bring home files and documentation so that she never missed a deadline.

In 2009, the first signs of dementia manifested themselves in short term memory loss and constant repetition.

Although not diagnosed at this stage, she realised she could no longer cope with numbers and spreadsheets. Yvonne applied for a job as an online picker at Sainsbury’s and started her role there in the summer of 2012.

Switching roles

It was 2013 when we finally received confirmation of young onset Alzheimer’s. By that point, Yvonne's capabilities had dramatically declined so we simply switched roles. She became my sous chef and I took over most of the gardening. I confess, though, that I never did get my head around sewing and interlock machines.

Sainsbury’s astounded our family by keeping Yvonne employed for a further four years. The company found ways to constantly make her job easier and reduce her work hours. They explained to her colleagues the need to look out for her and how best to support her. 

‘I have no doubt that having meaning to her days kept Yvonne’s brain stimulated and helped to stave off the rapid decline.’

This lasted until, unable to find her way either in or out of the store, she eventually had to give up her job in early 2018.

Considering care options

Yvonne and I had wonderful support from family and friends alike. We also used the services of a day centre a couple of days a week, as well as enjoying Singing for the Brain sessions. However, I eventually realised that I was burning out. 

The tipping point for me came with the onset of Yvonne’s double incontinence. At this time, towards the end of 2018, I realised I could no longer recharge my batteries and needed to consider professional care.

I looked at three options: carers coming to our house at given times of the day, live-in carers and finally full-time residential care in a specialist dementia home. 

My kids and Yvonne’s sister were very supportive of Yvonne receiving the best care possible whilst also allowing me to lead a life. I had not been able to do so for a very long time, and with this in mind I focussed solely on the care home option.

The main decision criteria for me were consistency of care and a person-centric approach. 

‘It was important that any care home recognised Yvonne’s age and interests.’

Above all, I wanted an environment that would be the antithesis of the depressing care homes I remember visiting as a child to see aging relatives.

I invested three months in evaluating six care homes. We were lucky to find somewhere less than 20 minutes from where we lived which met all my criteria.

A home from home

From day one, in May 2019, Yvonne loved the home. She never once asked why she was there or why she wasn’t leaving with me after a visit. I hope this proves that, fortuitously, we got the timing spot-on, and I made the right decision.

‘Knowing Yvonne’s interests, the care home staff are mindful of which activities she finds most stimulating.’

They have made a point of spending 1:1 time with her in the garden. The staff support Yvonne to fill the bird feeders, do simple gardening and pick tomatoes in the mini greenhouse. They also help her with biscuit baking using her favourite simple recipes, which I take in for them to buy the ingredients and use. 

For Yvonne this must have felt like home from home and was beyond doubt one of the reasons she settled in so well.

I could write at length about the last two years of coronavirus and how that has impacted Yvonne, as well as the wonderful staff at the home. But that’s a blog in its own right.

I’ll close by answering a question that I’ve been asked by many on many occasions. Do I feel guilty about having Yvonne cared for outside of our family home? The answer is a simple and definite ‘no’ because I know I would have felt guilty soldiering on when I was exhausted and ultimately not doing my best for her.