Adjusting expectations from the holidays: reflections from a family living with dementia — part 1

“Oh, you’re being over-protective. Are you sure? Why stop him from having fun? He really seems totally fine!”

These are the reactions that Anne has heard, frequently, from new acquaintances, from friends, and even family; people who are not familiar with the sometimes deceptive “look” of dementia, particularly at a young age.

Anne is a caregiver to her husband Paul (not their real names) who is living with a progressive form of dementia. Their experience since he was diagnosed many years ago is that when Paul consumes an alcoholic drink, or a couple – which is usually at a social event – his symptoms become progressively worse. He starts to slur his words, forget the names of people around him, and get very tired. Often, he just completely shuts down. At that point, the couple inevitably have to leave the event early, saying their excuses and making a quick retreat.

This is only more pronounced in the holiday period, when the number of potential social occasions is greater, and expectations are higher to be social, “relax and enjoy”.

It wasn’t always like this

Similar to other couples, Anne and Paul enjoyed a busy social life in the past. Alcohol, never consumed to excess, only added to their experience – reducing inhibitions, and increasing the laughs. The couple would celebrate special occasions or social evenings out with a glass or two of wine, or a cocktail. They would clink their glasses and commemorate the time together.

Having a drink together was not the focus of their fun, but rather it was a liberator, a contributor to the moment, cemented into the memories.

All that changed when Paul started experiencing symptoms of dementia. Enjoying a drink together could no longer be part of a celebration. That part of their life was over. While it took Anne several years to adjust to this new reality – one where having a drink with others is still too painful a reminder of the life she enjoyed with Paul – the adjustment for others in their life has in some ways been harder to endure.

Adding insult to injury

Anne has found socializing with a group of people, especially around the holidays, can be quite stressful.

It starts with having to speak to Paul extensively ahead of time, to ensure he understands that he cannot have a single drink. Paul, remembering the fun he used to have, and still wanting to be one of the guys, can easily be persuaded to have a drink or two, when Anne is not within earshot.

It continues with Anne advising their hosts that they are not to serve Paul anything with alcohol to drink. As hard as these conversations are, so is the pushback that she has frequently received. She feels like she’d being gaslit, like people think they know the reality of the situation better than she does. What’s worse is peoples’ reactions if he does have that drink – laughter, a knowing exchange of glances. Even if the intent is not mean spirited, the effect on Anne and her family has been devastating.

Dementia does not go away just because others don’t to see it

The aftereffects of alcohol could go on for hours to days. Paul has no filter to tell him to when he is being inappropriate. He would be vulgar and offensive to his kids, fall asleep during dinner, and generally be impossible to be around. Recovering from that one or two drinks could take days.

It’s important to understand that people living with dementia and/or a neurodegenerative disease have a brain that has already experienced some damage; they are therefore more susceptible to the effects of alcohol. Alcohol can exacerbate the impact of the medications they are taking, such as a sedative or anti depressant. It is critical to always check with the person’s clinician to understand what is advisable with respect to alcohol intake.

“The holidays, that were always such a time of joy, now create a lot of anxiety for us as a family,” said Anne. “But there are ways to adjust. We have started buying Paul non-alcoholic drinks to take along to celebrations. I use flavour enhancers with his sodas, so they feel more like the old alcoholic drinks he enjoyed, so he can feel like ‘one of the guys’ again”, she continued.

These adjustments and creating new holiday activities has been the way this family has coped.

More to come in this series.