our story
Dad, dementia and why AirCarers Companion exists
David Hall, Founder, AirCarers Companion
Mum passed away, and Dad was living on his own. He started struggling to get his words out, stopping mid sentence, so we got him checked out. An MRI scan confirmed he had dementia.
We hoped the medication would delay or slow the decline. We tried hard to support him, but we could not reverse the illness or push it back. My brother Eamonn and I looked after him through it, in Harlow, until he went into a care home and then until he died.
Here are my thoughts on what happened with Dad. I hope it may help another family.
the years before
What I wish someone had told me
We expected a slow, gradual decline, especially once Dad was on the medication. We thought it would be obvious when we needed more care. It was not like that. Dementia is not a linear journey. It can change in a week.
Dad had two bad urinary tract infections, and both moved him to a completely different stage. The first one meant carers coming in twice a day, seven days a week. The second one meant a care home, because he could not be left on his own any more. Once each infection cleared, his cognition never came back to where it had been before.
If I had known that, we would have had the care plans, the phone numbers and the contacts ready before we needed them, not scrambled together in a hospital corridor.
Hope for the best. Plan for the worst.
what changed
What it did to his memory
Towards the end, Dad thought he was back in Wexford. When he was in hospital in Harlow, he was sure he was in the hospital in Enniscorthy. His Irish accent got noticeably stronger.
He remembered Eamonn, he remembered me, he remembered Mum. He did not remember his house, or thirty years of living in Harlow. We were lucky. He never reached the point where he did not know us. I know plenty of families are not that lucky.
He did not remember his house, or thirty years of living in Harlow.
the lighter moments
The funny moments
There were some. When Dad thought he was in Ireland, we would walk onto the ward and he would be delighted to see us and ask how we had got there. Did you fly? Did you take the ferry?
He thought we had made a six hour journey to visit him, every single day. We got a lot of credit for that. I can laugh about it now. At the time it was quite upsetting.
We got a lot of credit for that.
And then there is sundowning.
what nobody warns you about
Things nobody warned us about
Two things did more damage to Dad's dementia than anything else, and neither of them was dementia. Urinary tract infections, because people with dementia forget to drink and the infection sends their confusion through the roof. And constipation, which nobody talks about and which had the same effect.
Then there is sundowning, the late afternoon change in mood and confusion that catches every family out the first time.
Neither of them was dementia.
the loneliness
How dementia deepened his loneliness
Dementia took the bowls club, then the TV, then the phone, then the driving. Each one made his world smaller, and a smaller world made the dementia move faster.
The thing I keep coming back to is the grandchildren. When they visited, after twenty minutes or so Dad would perk up. They would get him talking about when he was younger, get his brain working in a different way, and the difference was fantastic.
Looking back, if we had found one or two good companions he could have built a relationship with, I think it would have staved things off a bit longer, and maybe got him eating and drinking a little more. It is hard to look back and think that. But it is true.
A smaller world made the dementia move faster.
what it cost
What it actually cost
Home care was around 35 pounds an hour. Two visits a day, seven days a week, came to roughly 500 pounds a week. The care home was about 1,800 pounds a week. Before Dad could be accepted as a permanent resident we had to show 139,000 pounds in his account.
Both figures were a complete shock to me. I am sharing them because nobody shared them with us.
Nobody shared them with us.
the care home
The care home
After the second infection, Dad went into a care home. The staff were lovely and, for the first time in a long time, Eamonn and I could relax. He was being looked after twenty four hours a day and we could visit whenever we liked.
It was worth every penny for that peace of mind. That does not mean it was not a shock.
It was worth every penny for that peace of mind.
what I would say now
What I would say to another family
As much as you hope it will not deteriorate, for us it did, and at times very quickly. So: hope for the best and plan for the worst. Have plans in place for the sudden changes.
And do not wait until it is too late. Get the small interventions in early, before the falls, before the not eating and not drinking, before everything is stressful. I think the outcomes are much better if you can get ahead of it.
Hope for the best and plan for the worst.
Why AirCarers Companion exists
This is why I built it. Not to replace carers or care homes, we needed both. For the years before that, when what Dad needed most was someone to turn up, sit down, and get him talking. Help before care.
If you are at that stage with a parent in Hertford, Ware, Hoddesdon, Broxbourne, Sawbridgeworth or Bishop's Stortford, Lucie will talk it through with you. No contracts, no minimum hours.