In Ken’s words…
About five years ago, it became more and more obvious that Elizabeth wasn’t remembering things from one part of the day to the next. She had notebooks all over the place, but didn’t refer to them or couldn’t understand what was written there. People say, ‘Oh isn’t it fantastic to be 90-odd and still going strong,’ but it isn’t always fantastic for the carers – it can be a nightmare. Some days she could be on the phone half a dozen times, asking the same question.
Getting support at home
Elizabeth had a seven-day pill box, but she wasn’t taking her medication. The social services did assessments and agreed to come in and make sure she took the pills, but they wouldn’t monitor that she was eating her meals or anything else – they said they were too overloaded at the requisite times of the day. Even the medication support took ages to get in place.
Elizabeth was referred to a psychiatrist, who said that she was a danger to herself and others, but we still had great difficulty getting responses from social workers. Time and time again they didn’t return our calls, and that really got to us. Email was only slightly more effective. It was a big strain for all of us. I kept very detailed notes of everything we did to help Elizabeth: every attempted contact and every conversation with the social services and the doctors, and what the responses were.
Organising respite care
My wife and I ran our own business and were in the habit of booking holidays up to a year ahead. We told social services about six months in advance that we were going abroad for a four-week holiday. As that time drew closer, we had no confirmation that they were actually going to do anything.
Elizabeth’s condition was rapidly deteriorating and when we were three weeks from going, I wrote an email pointing out that they had either declined or avoided all our requests for a face-to-face meeting to sort this out. I explained that we didn’t know what was happening, that her doctor had said she was not safe and that I had kept a detailed diary of every communication we’d had with them. It was a stonker of an email! I wasn’t rude, but I was very, very direct, and said that I wanted not just an answer but I wanted action.
Be robust with the authorities without being rude.
Within two or three days they found a respite space in a care home for Elizabeth while we were away. Fortunately it was incredibly good, with fantastic staff. While we were away they assessed her and said, ‘She can’t go back into the community, she can’t live on her own, she needs permanent care,’ so she stayed in the home. Actually it was an immense relief. She’s been there 21 months now and is very well looked after. We’ve had two Christmas lunches there, the food is good and we’re looking forward to the next one!
Advice on how to get the support you need
My advice to other people in this position is to be robust with the authorities without being rude. You’ve got to have evidence, otherwise they can wriggle out of things. Stick to the facts, don’t get emotional and keep the pressure on.”
Respite care offers carers a break from caring, by providing replacement support. We explain your options.
The importance of planning ahead, how to access local authority respite care and choosing respite care.
If you need a complete break from caring for a short time, the person you care for may be able to stay in a care home ...