Consultant’s Corner – November 2019
by Carolyn Lukert, MBA, CGCM,
PAC Consultant and Mentor
Dear PAC Consultant,
I can’t believe it’s the holiday season again. Usually I would be happy as it has been a favorite time of year for my family and me over the years. But not anymore.
My mom has dementia, and everything is different now. Just the thought of the upcoming holidays is destroying my holiday spirit. First, the buildup. Helping my mom buy gifts is about as frustrating as it gets. While she wants to be generous and get gifts for her children, grandchildren, and friends, she is not able to manage the process of deciding what to get whom, and an outing to the mall is a complete nightmare. Multiple stores, multiple times in the same stores, indecisiveness over every. single. gift. Then, helping her keep track of what she has gotten for whom is quite the exercise in futility. How many times will I be asked, “Did I get anything for (fill in one of about 25 names)?” Ugh!
Fast forward to the actual day of the holiday. Whether it is Thanksgiving or Christmas, a large family gathering is involved. We go to one of my local siblings’ houses for dinner and celebration. Several weeks ahead of time, my mom starts getting anxious about what to bring, and what to wear, and obsesses about it nonstop. Then, when time comes, she says she doesn’t want to go. One of my siblings or I will basically guilt her into going, but within 30 minutes of getting there, she either wants to go home, or she will retreat to a back room and not want to be around anyone. It is just so strange because she always used to like to be right in the middle of everything. I end up giving in and taking her home which, incidentally, ruins my holiday and puts a damper on the holiday for others, as well.
I’m at a loss. I don’t want it to be this way, but I don’t know how to change it. Can you help?
I am... Frustrated in Fenton
Dear Frustrated in Fenton,
I am so sorry to hear how this is unfolding for you and your family. The distress you are describing in your email is palpable. This is a time of year that so often is associated with joyful celebration and togetherness, and for you, it is sounding like it is anything but that.
I am wondering if we might take a look at this in some small sections – very similar to how you structured it in your communication.
Let’s start with the holiday preparation. The prospect of having to shop for multiple gifts during the busiest shopping season of the year can be a daunting task for all of us, not only to those living with dementia. Crowded stores, loud noises, blinking lights, and lots of waiting don’t make for a recipe of success. I am wondering if finding a simpler solution to gift giving might be an option to consider. Could this possibly be an opportunity to make simple gifts together? When you think about your mom’s current level of abilities, as well as her preferences, does anything come to mind? Simple ornaments, cards, cookies, plants, even small pillows and blankets, can offer opportunities to make personalized gifts and maybe start a new tradition. And, involving others on the support team (family, friends) in these projects can spread the opportunity to support beyond just you. And, posting a list of what is being given to whom that you can reference each time she asks might give you a bit of a break. While you still may get the question repeatedly, you will have a visual cue to refer to, which may make it easier for you and your mom to know the status.
For the day itself – I am wondering what type of sensory changes your mother is experiencing, which might be impacting her ability to enjoy herself. With many dementia-related illnesses, sensory changes can impact a person’s hearing and vision in ways that can make it extremely uncomfortable to be in large and/or loud groups. Have you noticed your mom reacting in unexpected ways to noises or crowds in other settings? What about her ability to understand and follow conversations? If so, how might that be playing a role? And, the bigger question – what could be done differently to support your mom’s needs, and yours, as well? For example, could a smaller celebration be held in consideration of your mom’s sensory challenges, and/or could a less stimulating environment or area room be available for her to retreat to (or proactively be guided to) with just a few people periodically throughout the event? Perhaps combining this with an expectation that staying for a shorter period of time may make this situation easier and less distressing. There are many variations to this theme, with the common thread being that the planning in advance to reduce your mom’s distress will likely result in a better outcome for all of you. Adapting, versus eliminating the celebration and seasonal events entirely, may just be what is needed. In the PAC world, we call this responding, not reacting.
When it comes to holidays and traditions, we often want things to be the way they used to be. It’s human nature. The reality is that some things are the same, yet some are different. It doesn’t have to mean better or worse, just different. How can we look at those differences as opportunities to adapt and perhaps create new opportunities for connections and joy? After all, isn’t that a big part of what we are wanting to experience during our holiday season and events, anyway? I hope some of the options above are worth exploring further, and will spark an idea or two to try. What do you think?
All the best,