[This is the third installment of posts from Faith, AGE's CaregiverU Coordinator and expert on being a family caregiver - you'll continue hearing from her on a range of topics about once a month.]
We all carry visions of what the holidays should look like and often those visions don’t jibe very well with reality! At this time of year, many of us visualize a Norman Rockwell type scene with everybody gathered happily around a perfectly laid holiday table. Reality is often a bit different! In addition to that image, I also carry around in my head visions of previous holidays when life was different. That is, when the kids were younger and my spouse was cognitively able to partner with me in all the holiday preparation. Today my husband has a cognitive disability and the children are young adults with spouses and responsibilities of their own. Part of the holiday experience is traveling to their homes for visits and hosting them in our home, all the while helping my spouse cope and have a good time. As a caregiver, managing the holidays has come to mean managing many different issues—disruptions in schedule and routine, traveling, adapting to new surroundings, decorating the home, shopping for gifts, and preparing food, to name a few.
When we need to stray from our well established regular routine, I find dry erase boards are a valuable resource. We focus on one day at a time, so on a dry erase board I write down that day’s schedule. As I write, we talk about what to expect and how to be prepared. Then I leave the board out in a place that will be easily seen throughout the day. Sometimes we need an additional board on which to write details or items to be brought with us.
On these ‘irregular’ days, it’s easy to forget about medications, or to not be home when they should be taken. Keeping a regular medication schedule is important to well being, so I sometimes set the cell phone alarm as a reminder and keep the pills with me as we meander about.
My spouse does much better when he has appropriate activities to fill his time, and on regular days he has those. During the holidays, especially when away from home, I have to create and provide. My middle child, Christopher, has developed a wonderful resource for the days we are visiting the city in which he lives. He puts together a resource bag for his father and gives it to him upon our arrival. The bag has a variety of things Christopher has found at very little cost. Usually there are a few books on adult themes with lots of funny pictures. A delightful one was on the hundreds of uses for duct tape! Included also are usually some word game books and puzzles. My daughter, Joy, often provides a craft activity for the two of them to do during the visit. She also has a list of cleaning chores that need doing, all that her father is capable of doing with a little supervision. That supervision is especially needed when selecting the right cleaning products—a few years back we had a memorable bleach incident! Doing those chores not only fills his time, but also gives him a feeling of pride that he is able to contribute to the common good.
Safety must be a top priority during the holiday activities, safety for my husband and safety for those around him. That sometimes means firmly setting some boundaries on activities and places, and following thru to be sure that the boundaries are kept. It doesn’t make me popular but it does keep people safe! For example, yes, he can hold the baby—but only when he is seated and secure. Yes, he can go for a walk in this new neighborhood, but only if someone can go with him. And on and on. . .
It’s very easy in the midst of all the chaos of a family gathering, to lose track of my hubby, and goodness knows, what he’s gotten into during that time! Thus I’ve found the buddy system works well. I recruit another family member or friend who is present at the event to help me keep watch. Between the two of us we can usually maintain the right level of supervision.
A valuable resource I learned about from a good social work friend, is a tool that can be used to discretely communicate to strangers that my husband may behave differently than is expected. That great tool is a set of business cards which simply say, “My dear husband has a cognitive difficulty. Thank you for your understanding.” It’s fairly easy to give out these cards when needed, and the recipient usually becomes my new helper in the situation!
While staying away from home for a few days, a careful decision needs to be made on where to stay. My husband needs a certain amount of quiet time. He also likes to go to bed early and rise early. Thus staying in someone’s home may not be a good choice. Perhaps a hotel will work better. Careful thought about this will reap great dividends. When hosting overnight guests at our home, I simply try to ensure that there is a quiet place for him somewhere in the house, and that there are appropriate activities at the ready. My daughter-in-law, Leah, is great about gently guiding him into doing a puzzle when needed.
Attending events at any time of year is a challenge because the responsibility is all mine-to drive there, park, find seats, locate bathrooms, etc. Usually it seems too daunting and I decide to stay home, but sometimes dear friends will invite us to attend with them and sharing that load makes it worth the effort to attend. Occasionally, I’ll hire someone to stay with my husband, while I attend alone. It’s expensive, though, to do that and finances are limited, so it’s a rarity. To prevent extra stress, it’s important to evaluate carefully whether attending the event is worth the cost, including the effort.
Holiday times can still be very delightful for us, if we keep an easy pace, continue to provide what he needs, and share the care when the sharing is available. It will never be like it was in the past, but today is a new day and we can still make it good!
For more thoughts on making the most of the holidays with a loved one who has dementia, click here.