Being a care partner has its challenges and successes; in this post, I provide concrete strategies for enjoying Thanksgiving and the winter holidays as a dementia care partner or caregiver.
Travel or Stay Home?
If the person with dementia (PwD) is in the mild stage to early moderate stage and loved to travel pre-illness, traveling may be an option. Rather than get into all of the different stages, 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.
Holidays: For Them or For You?
I’ve seen families after families push the PwD 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 have to accommodate the person with dementia, not the other way around. The question to ask is, “How will this event affect the PwD?”
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 PwD is overwhelmed and frightened, becomes very anxious, and the idealized visit and plans crumble into a clusterf*ck. Here’s the issue: the emotions outlive the memory! If the annual Mother’s Day outing generates fear and anxiety, the PwD 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?”
Criticisms From Others
The thing is, family caregivers cannot catch a break. Families feel guilty “leaving” their parent or grandparent in a facility for Mother’s Day. It would be so much better to head to the facility and spend Mother’s Day with mom in her own, safe, familiar environment. On top of their own emotions, the seagulls begin their chorus. The Seagulls start in on the family care partner (they probably already started for this Thanksgiving) with statements like, “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. The deal is, 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.
Unexpected Problems Brought Back Home
Here is another thought: if the PwD is gone for a couple of weeks, he or she may forget the map of the current home, especially if they have lived in that home for 10 years or less. True story: I had a gentleman with moderate dementia whose spouse was adamant that they were going to travel across the United States to visit various adult children “one last time.” This couple had downsized 5 years prior and resided in a garden home. The wife decided they were going to spend a couple of days at each child’s home. The poor guy was so confused and overwhelmed. He wandered out of the bedroom constantly, looking for the bathroom, sometimes dressed, sometimes nude. When they returned, he no longer recognized his own home. That 3-week cross-country trip accelerated his decline. His wife told me that she “wanted to make memories.” Unfortunately, she did, and few of them were positive.
It’s a good idea to obtain a medical ID bracelet with your name and cell number. But what else to put on it? Several of my families have opted to have “diabetic” inscribed because they felt awkward with “dementia” on the ID tag. And, people with diabetes can become confused when their sugar drops. One of my caregivers simply had “brain disease” etched on the ID tag.
Traveling by car offers the most flexibility. Plan out the route with stops every 2-3 hours. Have a cooler with plenty of fluids and snacks. If travel involves an overnight stay, you may want to request a handicapped-accessible room. Bring something to put on the door (bells, a cheap door alarm) to wake you up if your loved one tries to exit the room.
Trains are another good option. Ideally, get a seat in the carriage with a bathroom. What’s nice about trains is that you can get up and walk around a bit, especially if the train has a dining or snack car. The caveat about trains is the possibility that your loved one may exit during one of the stops.
Flying….is flying. Obtain a medical pre-board, especially if you travel on airlines that do not offer assigned seats. No, you cannot sit in the emergency exit row no matter how tempting. Many airports have family bathrooms, which is a good option if you are concerned about your loved one spending too much time in the restroom or wandering out and getting lost in the terminal. Keep connections to a minimum, if at all.
If your loved one has more issues with impulse control than with memory (behavioral-variant frontotemporal dementia, for example), or if you think the traveling experience may trigger some behaviors, have business cards at the ready: “My loved one has dementia and may act strangely. Thank you for your understanding and patience.” You can make these business cards yourself or purchase them. Some local chapters, like Alzheimer’s of Central Alabama, provide them at no charge to local caregivers.
“Rules of Engagement”
People with dementia need to have a job and purpose.
The outlets for purpose shrink, but the need does not. Provide opportunities for the PwD to help with the holiday plans. 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.
No guessing games.
If you are going to have out-of-town guests or family members who have not seen the PwD recently, give them a phone call with a quick update. Or share this blog with them, whatever works. They are NOT to quiz the PwD; 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.
Have a buddy nearby at all times.
This is especially important with moderate to severe dementia, where the PwD may need direction finding the bathroom or becomes overwhelmed with too many people. Designate a “buddy” who can hang out with the PwD 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.
Avoid Peak Services.
Mass and church services are integral to many holiday celebrations. If you have options, choose the least-crowded one. This may mean attending Mass at 6 am instead of 10 AM.
If you only have one option, or you can only get to the crowded service, here are some ideas. The PwD 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 and 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 scrapbooks and photographs within reach.
This is really important if the PwD 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 PwD’s spouse and one of the adult children. It can also open the door to reminiscence and family history.
Happy Thanksgiving! Merry Christmas! Happy Hanukkah!