Managing Expectations with dementia

As we hope for the decline of COVID, all of us are looking for opportunities to return to “normal,” which often includes travel. It is no different for care partners and their loved ones living with dementia, except for them traveling can present greater challenges.

Recently, I got a call from a member of one of my support groups who had just traveled to a northern state. She told me she thought everything was going well, until the day after her arrival when she experienced a complete emotional melt-down. She said she didn’t see it coming, and was confused that it had happened.

I asked about details of the trip and learned that they had departed Florida late in the day, which created a problem finding a room where they discovered they had left behind medications and dog food. Turns out, they were traveling not with a mature dog, but with a puppy! Their trip covered 1,200 miles over a four-day period, which included stopping to attend a funeral. In addition, our friend who solely manage this journey, including caring for her husband with dementia, is 80 years old!

Wow! This would have been a daunting and trouble-fraught task for a person half her age, and I was quite puzzled that she was puzzled that she had paid an emotional price.
I think the lesson here is that some of us may make assumptions that the “new normal” will be just a continuation of life as we knew it before COVID. Believing this, we think we can jump back into life as we knew it, and as we previously managed it.

I don’t think we can. First, as care partners we have all aged during a time of our lives when aging can bring on significant changes, including decline in our physical abilities. Second, our loved one with dementia has likely declined more than they would have over the same period without COVID. We have seen clear and frequent evidence of this!

I believe it is healthy and important for us to get back into the world, but I wonder if we should greatly moderate our expectations. We can do this by planning to take on less than we think we can handle. We can always ramp up our plans and responsibilities, but not fulfilling them can lead to the kind of emotional toll my friend experienced.

Find ways to ease back into a semblance of your previous life. Don’t make assumptions that you have your pre-COVID strengths and abilities. Pace yourself and watch closely for signs that you may be taking on too much.

As for travel, it has always been a serious challenge for families living with dementia. It is never easy. But there is plenty of good guidance out there. For example, check out the suggestions on Teepa Snow’s web site at

And continue the support group connections you have made during COVID. Even when you travel, arrange your schedule to check in with the others who care about you. None of us should try to manage dementia alone.

Until next time remember: “We all deserve the Best”

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