The Story of Jack and Mary
It was during Jack’s second Emergency Department visit in as many months that a concerned nurse began to explore the role that caregiver burnout might be playing in his recent health issues. Jack’s wife Mary was diagnosed with early stage dementia three years ago, and until recently she was doing quite well. Over the past year, however, there had been a significant decline. Although Jack assured the nurse that he was managing fine, she was able to convince him to agree to an in-home visit to assess the situation.
The in-home assessment found that Mary required a considerable amount of support and assistance with activities of daily living. It also found that Jack was an extremely loving and compassionate husband who ensured his wife’s safety and well-being by staying by her side almost every minute of the day. As retired airplane production mechanic, Jack was no stranger to hard work and long hours and had been holding up well under his gradually increasing caregiver duties.
However, recently Mary had developed some new behaviours. She had started having difficulty sleeping and began to wander restless during the night. She was also gradually becoming more withdrawn from activities she once enjoyed, requiring more attention from Jack during the day. The assessment concluded that Jack was experiencing caregiver burnout related to lack of sleep and the increasingly high level of care his wife required. Jack was given three referrals: to the Alzheimer Society for caregiver support, to an adult day program to encourage stimulation for Mary and provide respite for Jack, and to LOFT’s Behaviourial Support Services – Mobile Support Team to provide support in dealing with the new behaviours.
The LOFT Mobile Support Team’s immediate focus was on Mary’s safety and providing respite for Jack. Safety was improved in Jack and Mary’s home by securing exits and removing harmful objects and tripping hazards. They also facilitated Mary’s enrollment in the adult day program one day per week, and provided one of their Personal Support Workers to work with Mary one afternoon weekly. This gave Jack some time to himself.
For the first time in months, Jack was able to engage in activities he enjoyed, such as working on the sprawling model train set in his basement. The Mobile Support Team worked with Mary to modify activities she once enjoyed to match her current capabilities, including helping her to discover that there are a number of word games as engaging and entertaining as her once-favourite crossword puzzles. They showed Jack how to use a gentle approach of redirection strategies when his wife became restless or began to wander at night. Finally, the Mobile Support Team created signs for Jack to place in the bedroom and bathroom during the night to remind his wife that it was night time and cue her to return to bed. To his surprise, Jack found that these signs were often all that was needed for his wife to return to bed.
Jack was so impressed by these practical strategies that he was inspired to develop some ideas of his own ideas, and as a mechanic, he had no shortage of innovative ideas. First he created a motion sensor nightlight that would project the words “BED TIME” when wife walked by the device during the night. He hoped it would cue her to return to bed before she even reached the bedroom door or turned on the lights. He happily reported that it was often successful. Another project involved creating a lighting system that would alert him when she failed to hang up the telephone properly, something that was happening frequently and resulting in regular missed calls from family and friends. Finally, Jack improved the safety of the stairway to the basement by installing a lighting system on the outside edge of the stairs aimed at helping with depth perception.
Jack reports feeling much better and far less overwhelmed after receiving this continuum of support from the Emergency Department nurse, the in-home assessment and the LOFT Behavioural Support Services – Mobile Support Team. He is especially grateful for the practical support provided by the Mobile Support Team and the strategies that he and the team implemented. Perhaps most importantly, Jack has many more ideas that he is working on to help him and his wife manage the behaviours associated with her dementia.
Knowing his creativity and ingenuity, the possibilities seem endless.