Holidays, Visits and Lewy Body Dementia

There are traditional holidays and important dates around which you likely go to visit your slightly more distant loved ones, or invite them to your home. You may have hesitated to do so when you learn of a person’s health difficulties, especially if it’s dementia or mental illness. It’s natural to not know how to act, what to say, how long to visit: but the key is just to be present. To go, and be there.

Gifts and activities and decorations are not the key. For most with LBD, keeping as close to routine is very important, and with minimal intensity that can be maintained with the fewest guests possible. One may be ideal. Plenty of recovery time between is likely beneficial as well.

“Showtiming” may give a less frequent visitor the impression that all is well. This is common, and can be very misleading. Once back to the person’s regular routine, they may be back to a very compromised state. And for those who care directly, its worth being prepared for what I refer to as the “showtime hangover” which is a common occurrence, where the person’s behaviour, energy level, balance, cognition and thinking is dramatically lower after a social event, which I believe has to do with the cognitive reserve that’s taxed heavily by the engagement and energy expended during holiday or social events.

Help out: make your visit burden free for the carer

Keep an eye on the primary caregiver when you go. Their health and well-being may be suffering greatly, but they may not convey this. Try your best to make your visit one that takes work from them, rather than adding to it. Do whatever you can to help those you visit, so there’s less to be done than when you arrive. This may give you more opportunities to “step up.” Try to contribute meaningfully, in ways that are easy to do, but will make a huge difference. And this will make an inspirational difference to all involved.

Accept things as they are at the moment

Adjust your expectations as well, especially about your loved one. Practice mindfulness and focus on your breathing if the situation is challenging, or if you’re anxious before you go in. Simple things like this, which only take a moment, can transform your visit.

Dementia with Lewy Bodies typically fluctuates, sometimes drastically. This means you may find a person who seems completely normal, or instead, seems in very bad shape indeed. However, their “norm” may be the opposite, or neither. Accept things as they are, and act appropriately. It’s easier than you likely think.

Calming, short and sweet visits

Visits, and any change from routine can be very upsetting to a person with cognitive difficulties. So even if the visit is going very well, it may be exhausting for your loved one. The exhaustion may not show itself until after you’ve left. Shorter visits, with the fewest number of people, and with the least commotion are likely best.

You may not have seen their loved one for some time, and it’s worth being ready. Go with confidence, and have a meaningful visit. The benefits can be monumental. The key thing is to accept them as they are, right now: things may be a little, or vastly, different than you expect. But there is very rarely any reason not to visit. Summon any courage you need, do the right thing, and make a difference in their life.

Finally, as the video below suggests, keep an eye on any carers involved: they may need your help too, perhaps even more.

Strength and courage to all!
Timothy Hudson

 

Updated November 27, 2024
Originally published November 21, 2018

Visiting a person with Lewy Body Dementia

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