In a little over a week, Christmas will be here. In my experience, it’s probably the hardest holiday for a dementia patient.
For me, having more than three people around might as well be a crowd. Add wrapping paper flying everywhere, excited kids, music, loud conversation, and our dogs all riled up, and you have what I call the perfect storm.
However, I never want to compromise this holiday for my family. No dementia patient would. Fortunately, I still have the ability to remove myself from all the hubbub and confusion. I simply go walk outside with my therapy dog Sam if things get too chaotic, but some patients aren’t capable of doing that.
At this time of the year, families have to remember that what once was is no more. Grandma may think she can still prepare the celebratory meal, but in reality, she cannot safely boil water. Or Grandpa, who used to love watching all the grandkids open their presents, now finds this to be a stressful situation that could take days for him to recover from.
There isn’t a patient who would want to put a damper on this time of year for anyone, but, once again, the disease is the culprit. Long-running traditions like this become more difficult to enjoy or even tolerate as one’s condition progresses. So far, I am still able to handle Christmas Day. It is tough, but everything about this disease is. There will come a time when I can no longer cope.
In fact, the stress has already started for me. We have a Christmas tree in our front room, which, of course, does not belong there. Something as simple as putting a tree in your living room can set off a series of anxiety attacks for a dementia patient. As beautiful as the twinkling lights are to you, these can drive me crazy.
Unfortunately, dementia and Christmas aren’t a great combination. This disease can put a real damper on keeping up holiday traditions. I tell people all the time that their loved ones have specific routines they are comfortable with. Drastically changing the way their home looks and hosting/attending holiday gatherings can be nerve-wracking for dementia patients.
Now, this doesn’t happen with every patient. Each one is different. Some patients I know love this time of year. On the other hand, I do not. The house looks and feels different, which worsens my confusion. Having to be at a certain place at a certain time is increasingly difficult because of my limited sense of time. With throngs of people, there are plenty of opportunities for forgetting names and faces, and crowds make conversations particularly difficult to follow.
Nonetheless, my wife Phyllis June and I still host the family for Christmas dinner. I do love having them over, but it makes for a long, confusing and stressful day. Please keep this in mind if you are caring for someone with dementia.
It is likely that most family members don’t come around much anymore, and the first thing they usually do is bombard the patient with questions.
“How are you?”
“You don’t look sick.”
“What can I get for you?”
“Do you remember…?”
It goes on and on. Most people mean well, but dementia patients’ communication skills often decline as their condition progresses. The casual “How have you been?” conversation that so many family members have when reuniting during the holidays can be extremely challenging. Keeping questions to a minimum is always a good policy.
Children are also a central part of holiday gatherings. Their excitement and playful antics are uplifting for most family members, but shouting and horseplay can be very disorienting for me. If kids will be attending dinner and other celebrations this season, please encourage them to talk and have fun but use their inside voices. Better yet, communicate this to their parents well in advance. Make some calls a few days beforehand. Explain to your family members and friends that things are different now and keeping the chaos to a minimum is crucial for your loved one.
With all this being said, it is my sincere hope that each and every one of you has an enjoyable and uneventful Christmas Day. I really think I will get through this year, as I have many others. I will keep my distance and just go to another room or walk outside for a bit if things get too hectic for me. This way my family can carry on the celebration without too many modifications. If your loved one isn’t capable of safely removing themselves from the situation, please try to be extra attentive to how they are feeling and when they’ve had too much excitement. If they overdo it, they’ll feel out of sorts for some time and this will mean more stress for you as well.
As a caregiver or family member, there is little you can do to prepare your loved one for what is going to happen in the next week or so. Trying to explain events in advance will not work. That is why it is imperative to inform your guests of the circumstances and how they can help prevent issues.
It is my job to watch out for the patient. I want everyone to have a wonderful holiday, but if your plans put your loved one in a stressful situation, then certain aspects need to be adapted or removed from the equation altogether. Perhaps new holiday traditions with family can be formed to keep crowds, noise and excitement in check.
I know this sounds harsh, but I know all too well what this time of year can be like for someone with dementia...
Editor’s Note: Phyllis June Phelps, Rick’s wife of 38 years and primary caregiver, passed away November 9, 2021. She was 64 years old.