Christmas is an enormously difficult time for both the carer and their loved one with dementia. The demands of delivering what is expected from the season, coupled with the demands of caring is challenging. The disruption to routines caused by bank holiday closures of day centres make for added confusion.
However the hardest thing to deal with for us is always the ghost of the Christmases past, an annual reminder of what you had and lost. The family traditions that we enjoyed as a family with my Mum at the helm are a distant memory. Thoughtfully chosen presents, fantastic baking, organising silly games… Mum loved Christmas and was always central to ensuring everyone had a good time. This year her confusion over dates has meant that for the past few months she has been convinced she had missed Christmas and somehow we had celebrated it without her; making her feel wrongly excluded and us sad that she could even imagine this was a possibility.
Cruelly Mums memory also plays tricks on her regarding the year. On Christmas Day morning she pressed her panic button, angry and resentful that she hadn’t been woken “to be getting on with Christmas” It was 6.45am and we were still in bed. Her mind had taken her back over thirty years ago, to a time when she would have been preparing the turkey, and watching me open my presents from Santa. She was indignant she had been excluded even though these things weren’t happening and was extremely difficult to convince otherwise.
On long days when Mum doesn’t have her day centres her sense of time slips further. Napping in her armchair seems to exacerbate the problem and she frequently wakes up angry that no one has been in to see her all day. Sleep seems to erase her short term memory and she has no recollection of shared chats, meals etc and is then resentful that they don’t happen. The constant challenging WHY makes us feel feel failures both as carers and as family who love her e.g.
“Why doesn’t anyone come to see me?” (we do)
“Why did you call me late for tea? Don’t you want me through?” (we didn’t)
” Why don’t you love me anymore?” (we do)
New memories have been made, new traditions established with our own children, but the challenge of making Christmas enjoyable for all the family hasn’t been easy.