An overwhelming sense of loneliness often permeates dementia caregivers, especially during the holiday season. This can be caused by their social world collapsing around them and the feeling of being trapped in a domain of solitude.
This is a sensation that most people cannot grasp if they have never experienced the tribulations of serving as a primary caregiver. An outsider’s mind can’t understand how a caregiver could feel such a heavy weight of aloneness when, in reality, they are never by themselves, always caring for someone 24/7.
If you plan on taking on this challenging and noble job, be prepared for vast changes. Running to the grocery store, visiting friends, or just going for a quiet drive may no longer be an option since you may be unable to leave your loved one alone, not even for a single minute. This all starts boiling together, where you likely experience the sensation of being isolated.
Unfortunately, these emotions may become more intense during the holiday season. This time of year is known for bringing on more substantial bouts of depression. Your friends from the past are out celebrating the holiday festivals, Christmas parties, or other family traditions. Your plans may be disrupted because simple family rituals have taken your loved one with dementia out of their daily routine. Like everybody else, the caregiver has extra errands to run in what feels like a shorter period, typical holiday madness.
Rather than dwell on the downside of things, here are specific steps you can take so that you and your loved one can enjoy the holidays.
First: Try to hold the family celebration in a familiar environment. Taking your loved one to another family member’s dwelling could prove too confusing for them. This could devastate everyone’s holiday. I suggest celebrating quietly in the comfort of the beloved one’s own home.
Second: Make sure to tone down the decorations. Blinking lights and large holiday displays may overwhelm any tranquility loved ones may achieve. Putting up a Christmas tree means, you probably moved some furniture around to make room. This by itself has upset their daily routine.
Third: Once guests have arrived, refrain from having everyone visiting with their loved one all at once. Talk with the family ahead of time. Keep the traffic to a minimum. Trying to recognize too many faces at once or the sounds of multiple voices all talking simultaneously may become highly upsetting for them. If possible, limit gatherings to the daytime hours. Visiting at night may make their confusion much more pronounced.
Fourth: Keep your patient’s food choices to a minimum. There’s enough turbulence going on already. The fewer decisions they must make, the better.
Many Christmases ago, I thought my father would enjoy helping wrap presents. This proved to be a very painful and time-consuming mistake, for both of us. Frustration and anxiety overwhelmed him as he was unable to remember whose gift he had just wrapped, only to have him rip the packages back open, throwing him into a world of confusion.
Let them try to help with whatever task you believe they can still handle. You need to remain calm and follow your instincts.
Holidays bring extra stress for everyone but don’t wear yourself down too thin. If you need assistance with the extra chores, don’t be afraid to ask for help from a family member or friend.
The main thing is to try to relax and enjoy the season. Hopefully, everything will remain peaceful. You have to do the best that you can.
I can’t tell you how many fellow caregivers have contacted me over the years, expressing how they receive more help from close friends than from their own family members. They are overwhelmed by the reluctance of their kin, opting to do nothing to help the loved one they’re sacrificing everything for.
Stand up a little taller, and do not let your relatives destroy your holidays. Give them a call and wish them the best. Don’t let these people distract you from achieving your primary goal: caring for the one who needs you the most.
Try to have a calm and relaxing holiday. After all, the number of seasons you have left to share with your precious loved one is becoming fewer by the very nature of their disease. Even if you celebrate the day, just the two of you, at least you’re together. To my way of thinking, this is the most essential issue. Someday, you may look back and wish you still felt all that loneliness all over again to still have your loved one in your life.
Gary Joseph LeBlanc
Dementia Spotlight Foundation