I love Kacey Musgrave’s song, “Family is Family:
They might smoke like chimneys but give you their kidneys.
They show up at Christmas, get up in your business.
You might look just like ’em; that don’t mean you’re like them,
But you love ’em.
Holidays can be wonderful, exhausting, amazing, and problematic all at the same time. Add being a dementia caregiver, and things get complicated! This year may be worse, because many families could not spend time together thanks to last winter’s coronavirus surge! In this blog, I offer simple tips to make any holiday–especially this Thanksgiving, Hanukah, Yule, and Christmas–dementia friendly ( and keep you from wanting to strangle any ‘helpful’ family members!).
Holidays: For Them or For You?
I’ve seen families after families push the person living with dementia beyond his or her limits because “this may be his last Thanksgiving” or “I want the grandkids to know their Mom-Mom before she gets worse.” These good intentions will turn travel and the holidays into a massive nightmare. We must accommodate the person with dementia, not the other way around. The question to ask is, “How will this event affect the person living with dementia?”
For example, I dread Mother’s Day when I’m working in long-term care facilities. Why? Because well-meaning families decide to take G-mom or Mom (with moderate to severe dementia) out of the Memory Care Unit and off to a crowded restaurant or family gathering. The person living with dementia is overwhelmed and frightened, becomes very anxious, and the idealized visit and plans crumble into a mess. Here’s the issue: the emotions outlive the memory! If the annual Mother’s Day outing generates fear and anxiety, the person living with dementia will remain in that state for hours after the event. The emotions then trigger other negative memories associated with those emotions, like the loss of a spouse or parent. Cue the repetitive behaviors: “I want to go home (to the childhood home)” or “Where is my mother?”
Travel or Stay Home?
If the person living with dementia is in the mild stage to early moderate stage and loved to travel pre-illness, traveling may be an option. As I explained in other blogs, here are some “milestones” to help you figure out where your loved one is on the dementia continuum. If your loved one can safely and independently perform basic activities (shower/bathe by him- or herself, make a cup of tea or coffee, safely use the microwave, dress in weather- and situation-appropriate clothing, he or she is most likely in the mild stage. You may notice that the person does become overwhelmed and cranky in situations that were no big deal before. However, you can help with some of that behavior with good planning and back up ideas. Even airplane travel may be doable!
If the individual needs much more assistance and support to complete basic activities, for example, you have to set out the clothes or hang out in the bathroom to make sure he or she showers using soap and water, then…caution. If “travel” involves heading over to a relative’s house in the next town, probably OK. If travel involves a several-hour car drive, train ride, or flight...you may want to rethink this.
Criticism from Others
Family caregivers cannot catch a break. Families feel guilty “leaving” their parent or grandparent in a facility for Thanksgiving or Christmas. However, it is often much better for the person living with dementia to stay in their own, safe, familiar environment and have family come to them. If you are a caregiver and other members of your family are insisting on seeing the person living with dementia outside of the facility, just know that they are dealing with their own issues. Those family members want to see Mom or Grand-Dad but do not want to go to the Memory Care Unit because of their own fear and guilt. Be prepared for the seagull chorus as they critique you decisions and your care: “Dad should be here,” “How can you be so thoughtless, you stick her in a nursing home and then you don’t even have her visit on the holidays,” “But she always LOVED the holidays,” blah-blah-blabbity-blah.
Holiday “Rules of Engagement”
Introductions–No Guessing Games
Everyone is always excited to see family and friends that they have not seen for some time. You can help out the person living with dementia by introducing everyone…especially family members who the person living with dementia does not see regularly. It’s sad, but grandchildren who visit twice a year are more at risk for “being forgotten” than the grandchildren who pop by nearly every day. Facetime and other virtual interactions are good; there does come a time in the severe stage where even virtual interactions may not help with recognizing family members.
If you are going to have out-of-town guests or family members who have not seen the person living with dementia recently, give them a phone call with a quick update. They are NOT to quiz the person living with dementia; tell them to introduce themselves. If Mom knows who they are, she will laugh at them and say, “Of course you are Marty! I’d know my own son!” If Mom is having trouble keeping faces and names together, this may help prevent anxiety.
People with Dementia Need to Have a Job and Purpose
As I’ve mentioned in other blogs, dementia causes the outlets for purpose to shrink, but the need for being helpful and for having a purpose do not. Provide opportunities for the person living with dementia to help with the holiday plans and activities. This may take some creativity on your part. For example, Mom always made the turkey. She is adamant that she is going to make the turkey. You are freaking out because last year, she sprinkled Comet on the turkey instead of salt. And stuffed it with a dish towel. You have 2 options: tell her “no” and deal with her upset behavior, or give her a turkey to prepare. A really small one! Have another relative make and bring the actual turkey that will be consumed. Win-win.
Holiday gatherings are a great opportunity to record family stories and anecdotes. The person living with dementia will enjoy the opportunity to reminisce, while someone can record the stories on a smart phone. You can also tap into their procedural memory. One of my colleagues was upset about all of her mother’s Brazilian recipes becoming lost to future generations because her mother did not use written recipes–it was “all kept in her head.” Mom was at the mild stage of dementia. I suggested asking her mother to make one of her famous holiday recipes. While mom made the dish, one family member could record her and a second family member assist by having ingredients, measuring spoons and cups, and any pans greased and ready.
Avoid Prime-Time Services and Events
Religious services are integral to many holiday celebrations. Try to choose attending at a time that is normally “good” for the person living with dementia. If you have options, choose the least-crowded one and briefest one. This may mean attending the early morning Christmas service instead of the midnight vigil.
If you only have one option, or you can only get to the crowded service, here are some ideas. The person living with dementia may not be able to tolerate sitting there for a couple of hours, especially if you have to arrive early to get optimal seating. I know this is against the “rules” for many congregations, but see if you can enlist someone to get there early and claim seating.
Another idea is to contact the church or synagogue NOW and ask about reserved seating for your family member. More faith communities have reserved seating for handicapped persons; use this seating. You may get some looks because our loved one is not in a wheelchair. So much for the scriptural passages about not passing judgment?
Have a Buddy Nearby at All Times
This is especially important with moderate to severe dementia, where the person living with dementia may need direction finding the bathroom or becomes overwhelmed with too many people. Designate a “buddy” who can hang out with the person living with dementia and move them to a quieter area if the festivities become too loud or boisterous. This also frees up the caregiver to enjoy a little break.
Have Scrapbooks and Photographs Within Reach
This is really important if the person living with dementia begins calling relatives by the wrong name, especially if the relative is no longer living. People with dementia move backward in time. Having scrapbooks and photographs allows everyone to see the resemblance between the person living with dementia’s spouse and one of the adult children. It can also open the door to reminiscence and family history.
Socialization is important, because people living with dementia and their family caregivers experience isolation. Your friends and family want to see you and support you, they just don’t know how. Hopefully, you found some ideas in this chapter and will share them with your friends and family. Or suggest they all read this blog!
Categories: Alzheimer's Disease Caregiving Dementia FTD Lewy Body Dementia
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.
I am so grateful for all the information you share dealing with this horrible disease. You have brought laughter in dealing with this. I have a question regarding a book by Dr. Dale Bredesen, he wrote a book, The End of Alzheimer’s,
Wanted to know your thoughts on what is his saying. Thank you again
Dr. Dale Bredsen’s book does not contain an Alzheiemer’s cure. Save your money. If you are looking at ways to maximize memory and function, it is worth a read. Here’s why. Every single person who has dementia, regardless of type, can have issues with medicines and lifestyle habits that are making their memory and functional abilities temporarily worse. These items include a badly functioning thyroid, liver problems, certain medications, poor sleep, depression, and anxiety. These same issues affect us. If you have a couple of days without sleeping, how well is your thinking? You probably feel “out of it” and may make mistakes at work. Depending on your sleep deprivation, you could be “cognitively impaired.” Your thinking and doing will dramatically improve after a couple of days of solid, good quality sleep. If you correct these problems, the person with dementia improves. Did you fix the dementia? Nope. You took away problems and now they are functioning at their true level.