Living with Dementia

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I love working jigsaw puzzles, the bigger and more complex the better! I’m one of those people who can look at the big picture, focus in on the hole for one piece, and then go and find it. I look at the hole’s shape, the colors around it, any unique characteristics the puzzle piece might have. Then I go on the hunt, and usually within a few minutes I’ve found my target.

Dementia is a lot like a jigsaw puzzle, only one where the picture changes daily, as do the shapes of the pieces and the size of the puzzle! Early on in the disease’s development, it might seem that boundaries are clearly defined and solutions to minor problems are relatively easy to identify and manage. Things like repetitive words and stories are well tolerated, and forgotten words or details can be easily explained away or minimized. But at the disease progresses, management strategies become much more complex and elusive to family members and friends. What works today to get your dad to take a bath might not work tomorrow or next week. Explaining why wearing clean clothing is important might elicit compliance or outright rebellion from your mom. Even routine tasks like brushing teeth or combing hair could confound both you and your loved one. And while there may be good days and bad days, the family caregiver must approach each day as a new puzzle to solve.

To solve a puzzle, it’s helpful to have a big picture for reference. Talk to a medical expert who can suggest resources that will help you understand how the disease might progress over time. Avail yourself of books like The 36-Hour Day (the gold standard) or others; there are many to choose from. Plug into resources like support groups, either online or in-person if you can get away to attend. Download the Alzheimer’s Daily Companion app to your smartphone for daily encouragement, suggestions, and resources.

Keep a journal; this is the best way to keep perspective on your journey in caregiving, and it could also be a helpful resource for others when you need to be away for a while. Keep records of challenging behaviors that emerge over time, and see if you can identify patterns for circumstances, events, or even times of day when these more commonly occur. Also, keep track of what solutions work and don’t work. It is especially important to make a note of those days when all the puzzle pieces come together, and a beautiful picture emerges. Celebrate those times and reflect back on them when times get tough.

Chris and I hope you’ll join our conversation and share your heart about how you work the puzzle of living with dementia as a family caregiver.

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