My posts are coming more frequently at the moment because more things are happening.
Last night I experienced a classic case of sundowning with my wife. http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Dementia_and_sundowning
This has never happened before and was quite an eye opener for me. I have read about them and spoken to carers whose partners demonstrate this behaviour, but never actually seen it happen. It started at 10.30pm when I woke my wife who had been sleeping in a chair while I watched television. I was ready to go to bed so I turned off the television and gently woke her up and said it was bed time. This in itself is an unusual occurrence as my wife usually decides to go to bed any time between 7 and 8 o’clock. It took a while for her to come to and stand up and get her balance. As I tried to lead her to the bedroom she pushed me away and started re-arranging cushions on the couch, tidying magazines on the coffee table, re-arranging family photos on the shelf and generally showing no interest in heading towards the bedroom. She looked around the kitchen, even opened the door into the garage, all the while muttering something I couldn’t understand. After 20 minutes of this she finally headed to the bedroom where she pulled back the sheets and was intent on getting into bed fully clothed. I sat on the bed and insisted that she undress and put on her PJ’s. This ‘discussion’ went on for a further 20 minutes or so before she accepted the idea of undressing and getting ready for bed in the way she has always done. Then I suggested she go to the bathroom and do her usual routine there. It was 11.25 before she got into bed. Lesson to be learned from this – don’t let her sleep the evening away in a chair.
Last Thursday I was invited to take part in a focus group to discuss the needs of carers of people who have dementia. This was organised by Medicare Local whose aim is ‘connecting health to meet local needs’. This is a federal government organisation set up with Medicare within the last 8 months. Information from focus groups is being used to guide the local area dementia strategy with the aim of improving services to people with dementia and their carers. The clear message I left with the leader of the group was that more dementia specific short-term respite care is needed. I have found the services provided by Commonwealth Respite & Carelink Centre to be invaluable because of the insights learned from attending the courses provided. The encouragement and contacts provided by this organisation, and in particular from my carer support worker have helped me to see beyond my previous situation of sometimes despair, many times anger, and then guilt because of my anger, to become much more sympathetic and caring in my dealings with my wife. That doesn’t mean to say everything is smooth sailing all the time. Sometimes there are going to be times like last night where every ounce of patience is drained away.