Well, it is that time of year where there is something we need to discuss. An overwhelming sense of loneliness often permeates dementia care partners, especially during the holiday season. This can be caused by their social world gradually collapsing around them and the feeling of being trapped in a domain of isolation. I know this because I’ve been there.
This is a sensation that most people cannot grasp if they have never experienced the tribulations of serving as a primary caregiver. Most outsiders cannot comprehend how a caring for a loved one with dementia could endure such a heavy weight of loneliness, when in reality, they are barely by themselves, always caregiving 24/7.
If you, dear reader, are planning to take on this difficult but noble role, be prepared for vast changes in your life. Running to the grocery store, visiting friends, or just going for a drive may no longer be an option. You most definitely will get to the point where you will not be able to leave your loved one alone, not even for what seems like a safe minute.
As time goes by the added stress of trying to perform both simple and not so simple tasks may cause this responsibility to bring on bouts of anxiety.
Here we are during the holiday season and guess what? This usually joyful time of year is known for bringing on strong bouts of depression for both the caregiver and the one cared for. Friends from the past are out celebrating the holiday festivities with Christmas parties and other traditions but, as for caregivers, plans will likely be disrupted or even cancelled. Even simple rituals are not in unification with the all- important “daily routine.” Like everybody else, the caregiver has extra errands to run in what feels like a shorter period of time̶̶ -typical holiday madness.
Does all this sound familiar to you? Rather than dwell on the downside of things, here are a few dependable 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. Going to another family member’s dwelling could prove too confusing and this would ruin everyone’s holiday. I suggest celebrating quietly in the comfort of the beloved patient’s own home.
Second: Make sure to tone down the decorations. Blinking lights and large holiday displays will be overwhelming. No tranquility will be possible.
Third: Once guests have arrived, refrain from having everyone visiting with everyone all at once, especially the one with dementia. Talk with your family ahead of time and create a schedule for visits. Keep the traffic to a minimum. An effort to recognize too many faces all at once or the sounds of multiple voices talking over each other will become extremely upsetting and additional confusion. If possible, limit gatherings to the daytime hours. Avoid sundowning hours. Visits at times when impairment is more pronounced makes absolutely no sense.
Fourth: Keep your patient’s food choices to a minimum. There is enough turbulence going on already. The fewer decisions he or she 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. Frustration and anxiety overwhelmed him as he was unable to remember whose gift he had just wrapped. He would rip the packages back open, throwing him into a world of even more confusion. This proved to be a long and heartbreaking night and its memory will remain with me forever.
Allow your loved one to help with whatever task you believe he or she can still handle. Remain calm and follow your instincts.
Holidays bring extra stress for everyone, but do not wear yourself out. If you need assistance with the extra chores, do not be afraid to ask for help from a family member or friend.
Find a way that you, yourself can enjoy the season. Hopefully, everything will remain peaceful. You just have to do the best that you can.
I cannot tell you how many fellow caregivers have contacted me, expressing how they receive more help from close friends than from their own family members. They are disappointed at the reluctance of their own kin opting to do nothing to help their fellow loved one.
This is where I suggest you stand up a little taller and do not let your relatives destroy your holidays. In fact, give them a call and wish them the best. Do not let these people distract you from achieving your main goal, which is caring for the one who needs you the most.
Remember to ponder in your heart that the number of holiday seasons you have left to share with your precious loved one are becoming fewer by the very nature of the disease. Even if you celebrate the day, just the two of you, at least you are together. To my way of thinking, this is actually the most essential issue. Someday you may look back and wish you still felt all that isolation all over again just to still have your loved one in your life.
Gary Joseph LeBlanc. CDCS
Dementia Spotlight Foundation