December is a particularly difficult month. I lost my mom on December 15, 2012 following her long battle with Alzheimer’s disease. The holiday season had changed many years earlier, but at least we were able to sit and hold hands, enjoy the twinkling lights on the Christmas tree and indulge in our favorite holiday cookies. Now that she’s gone, I’m left with a lifetime of cherished memories, a broken heart and an evolved perspective on just how precious life is.
There’s no doubt this time of year can be tremendously challenging for families dealing with Alzheimer’s and other forms of dementia, but my message is simple: enjoy the time you have left. A day will come when you will yearn for just one more holiday together. This horrific disease teaches us that tomorrow isn’t promised, and making today count is paramount. Traditions may shift and adjustments might be in order, but Alzheimer’s cannot stop us from creating beautiful experiences that will one day be priceless memories.
When planning your holiday festivities, consider where your loved one is in his or her progression, and use that as your guide. Start by letting go of the unrealistic vision of a perfect Norman Rockwell-esque Christmas. Remember that you have the power to redefine “perfect,” and it can be as simple as trimming the tree together, watching a favorite Christmas movie, or simply giving your family member a gentle hand massage with a lovely scented lotion. The time is what you make it.
If you’re at a point where you are still able to host a holiday meal or gathering, ask for help! Rather than preparing all of the food, ask each guest to bring something to share. Keep it simple, and focus on the people you love and the memories you’re making rather than an extravagant centerpiece or spotless house.
Another key to success is preparing guests before the day of the event. If they don’t visit on a regular basis, they may be taken aback by the advancement of the disease. Tell them what to expect, and give them some tips for connecting with your loved one. For example, it’s best to let the person with dementia guide the conversation if possible. Never argue or correct. Use music or old photographs to encourage reminiscing.
Remember people living with dementia are often more sensitive to noise, as well as the commotion that accompanies a house full of people. To counter agitation, keep the celebration small and create a peaceful distraction-free area where one or two people at a time can visit. Try to limit excessive noise, and consider having the gathering earlier in the day to stave off the effects of sundowning. Also watch for signs of overstimulation, and have a quiet, comfortable place available for rest.
Sense of purpose is vital to every human being. If there are tasks your loved one can help with, by all means let them! Long after my mom lost the ability to communicate, she went through a stage where she wanted to clear the table, rinse the dishes and load the dishwasher. Never prompted, she would finish her meal, then get up and start her post-dinner clean up routine. Perhaps in her mind she was in another place and time - all that mattered was that it made her feel needed.
Find stage-appropriate activities that you can do together: making cookies, hanging ornaments, looking at old photos, or listening to Christmas music. Include your loved one in conversations; speak slowly and clearly. Even if he or she can no longer respond verbally, your familiar voice, gentle smile and direct eye contact will bring about a sense of happiness and comfort.
Last but not least, take plenty of photographs and video! Trust me, you will absolutely treasure the images years from now. I’m very thankful to have many pictures and video clips of my mom to help me remember and relive those precious shared moments of joy.
Above all, try to relax. Avoid getting lost in unrealistic expectations and instead focus on creating positive energy and a joyful experience. The most important thing of all is love. It’s so simple; the best gift is your love and attention. Someone living with dementia may forget the visit itself, but the resulting emotions will remain long after. Today is really all any of us have. Make it count.