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When my parents developed dementia

Jude IrwinDad first showed signs of dementia in 1999. At that time, I couldn't know what was ahead – for him, our family and me. I was 43, with a communications job and a great life 300 miles away. But I worried about the changes at home and the strain on mum. Crisis hit in 2003, when dad crashed his car as a result of his confusion. I changed jobs and moved north to be with them. Colleagues thought I was crazy, or noble, but I had no choice – they weren't coping, and I couldn't support them at a distance.

First, dad needed a diagnosis. I dithered about seeing his GP behind his back, but an Alzheimer's Society advisor explained this had to be down to me. An important first lesson. From now on, everything would be down to me. If I'd acted sooner, dad could have had treatment much earlier.

Naively, I thought the NHS would look after dad. But I learned this wasn’t entirely an NHS matter. There was no neat road map to take him through the stages of the disease and ensure he automatically got the right care. That was down to me too, with support from professionals and friends who'd travelled the same road. Because dad had an income, house and savings, I found he wouldn’t get free care. Now that mum needs care too, I wish I'd got early advice to make their resources stretch further.

The next thing I learned – belatedly – was to get social services on board. Ask, and you're assigned a care manager to help you navigate through the system. But beware, that system may fail you. I came to dread the phrase, "It's not critical need." Dad stopped washing, started going to the loo in odd places, ate strange things and began wandering. Yet social services couldn't help, because mum and I – though inexperienced in dementia care – were there to keep him safe. The pressure on us became intense, but with council budgets tight, people living alone had priority. By now, it was clear mum was developing dementia herself. Inevitably, dad had an accident that put him in hospital. The next stop for him was a care home, arranged quickly by his care manager – this WAS "critical need".

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Once mum was diagnosed, the care manager organised four sessions with a social services enabler to take her shopping and help her cook. Then the sessions stopped. Unfortunately, the progress of mum’s dementia didn't. Dozens of different carers popped in briefly to give her daily medication – a confusing and dispiriting experience for her.

As time went on, mum became very depressed, losing her confidence and drive. We couldn’t rouse her to do anything. She had always been sociable, but when we took her out she was quiet and anxious to go home.

A friend told us about a new care agency with a different approach, claiming to be person-centred. From the moment they came and did an assessment we knew we were onto something. They made practical suggestions straight away, without being pushy: it was an instant success. Using the proceeds from the sale of the family home, mum pays for lengthy daily visits from one main carer and a small team of backup carers, all handpicked to match her personality. She is happy shopping, knitting and enjoying hobbies again with their support. Her confidence is sky high.

It’s been a tough road, but we’ve had fun times and seen improvements along the way, and there is now much better information around to help people find good care. But knowing we may lose that person-centred support when her money runs out and our council is back on the case remains a constant worry.

Jude Irwin is a supporter of Find Me Good Care – a free online information and advice service about care and support options. You can discuss this blog post further on the thread.