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Caring Takes Patience: Helping Loved Ones With Dementia To Enjoy the Holidays

Even in the best of circumstances, the holidays can feel like a Keystone Kop comedy or a carousel spinning at a high rate of speed as each of us tries to keep up with shopping, cleaning, cooking, traveling, and engaging in social events and religious observances. When caring for an elderly relative, especially a person with dementia (PWD), the sense of fatigue – and sometimes farce – can feel almost double-fold. That is why I wish to share a few tips for surviving the holidays. Indeed, these tips are valuable no matter what one’s age or circumstances might be!
First, a tip borrowed from the commercial airlines: Be sure to put on your own oxygen mask before attempting to assist others. Self-care is an essential part of being able to help a person with dementia: At this hectic time of year, be sure that you are getting enough sleep, good nutrition, exercise and emotional support as you tend to the needs of your loved one with dementia. The commandment to “Love thy neighbor as thyself” implies that there is such a thing as a just love of self — no, not selfishness, but a proper regard to maintaining the strength and equilibrium that you will need in order to share those gifts with others. Prioritize what really matters, and don’t sweat the small stuff. Take breaks when you need them, and call on friends and other family members to pitch in and help when you feel overloaded. Often, others are happy to have the opportunity to assist.

When communicating with a person with dementia, recognize that emotional reactions and a tendency to judge are naturalhuman. However, they need not control you or a situation. As a PWD’s ability to verbalize deteriorates, he or she often will rely on body language to convey his or her emotions and wants and — conversely – to assess your mood, intentions andor sincerity. Ask yourself, what is their body language saying? What is yours saying? Clues to reading another’s mood and intentions include the following:

Anxious: foot tapping, hands clenched, fidgeting
In pain or discomfort: grimacing, wincing
Angry: clenched teeth, fists closed, flushed face
Impatient: toes tapping, eyes darting, heavy sighs
Embarrassed: eyes downcast, shoulders slumped
Fully engaged caring: leaning forward, gentle touching, sharing posture or eye level
To connect with a PWD, you also must sometimes set aside your agenda; that is, forget the “To Do list” and be willing to “go with the flow” as the saying goes. Being overly task-oriented can make a PWD feel like a product on an Assembly Line. Make the PWD “look good” whenever you can; for example, offer concrete options and alternatives for even minor activities so he or she enjoys some sense of autonomy and control. Let relatives who are unaware of the PWD’s diagnosis be aware of it, so as to pre-empt any potentially embarrassing remarks.

You might need to adapt your holiday activities to the energy and attention level of your relative with dementia, keeping in mind that energy and attention levels can wax and wane through the course of a day. That being said, don’t forego exercise and fresh air.

“Activity grading” is a wonderful way to tailor holiday tasks and traditions to your PWD’s energy level and abilities. For example, consider baking cookies. Depending on your particular circumstances, the PWD might be tasked as one of the following:

Independent doer, e.g., decides to make cookies, plans, shops, chooses recipe, bakes
Independent doer, e.g., makes cookies once the recipe and ingredients are prepared
Doer of a specific task, e.g., measures, mixes, or pours, depending on ability
Doer of modified task, e.g., does a repetitive task with help or supervision
Observermonitor, e.g., listens for the oven timer to go off
Observerdvisor, e.g., tells of own experience
Observercritic, e.g., tastes the cookies
Observer, e.g., watches or listens
Notice how activity grading works well for children too! Likewise, for the PWD, avoid large parties and late hours. Allow for “time out” or a quiet space to retreat if a social gathering becomes overwhelming.

Finally, when considering gifts for persons with dementia, note that the holidays are a wonderful time to reminisce. Consider scrap-booking or watching old movies. Field trips to museums, churches, or temple can be a source of peace for you and the PWD both. Likewise, avoid too many sweets and other diet dangers.

For these and other great tips  I am indebted to Catherine Braxton and Tami Neumann of the Silver Dawn Training Institute (https://www.dementiaraw.com), as well as several other authors whose work I can recommend.