As the caregiver you forge ahead on this windy journey known as Alzheimer’s disease, trying to maintain strength and courage within yourself and also trying to keep things relatively normal for your loved one. If Tuesday card games are a regular event, you want to keep going, not just for the socialization of your loved one but for your own well-being. Maybe it is a stroll on a favorite trail, shopping at the mall, or dinner at a restaurant, you must not isolate yourself, nor do you necessarily want to isolate your loved one. While later on stepping out the door with the victim of Alzheimer’s may throw up too many barricades to even consider a trip to town especially when you have in-home help to relieve you so you can breathe deeply and freely for just a moment, in the early to mid-stages of Alzheimer’s disease, a semblance of familiar routines is recommended.
Plan for eventualities for your sojourn by packing a bag with a change of clothes, wipes for spills, an extra jacket, and maybe a change of shoes. Create small business cards that have a simple message: Patience please. My loved one has Alzheimer’s disease. Check the weather so you are not impeded by rain or snow, and keep the trip as brief as possible with a limited number of errands and stops. Getting into and out of a car or bus are challenging events; finding rest stops for restrooms and parking places near the destination are too. Make it easy on yourself and easy on your loved one.
Know that while in the past, even the “past” as in yesterday, your dear one could enter the car, fasten a seatbelt, and double check that the door is locked, today may be a different scene. I always recommend dignity, with patience added in abundance, so that you assist by saying, “May I help you get that seatbelt snug” as opposed to, “Are you kidding me? You’re in the seat upside down and backward! I’ll never get you into the seatbelt!” Loss of patience leads to gain of frustration. Increasing frustration moves to anger, confusion, and breakdowns. These breakdowns are exhausting for you and for your loved one, and they never accomplish a positive end.
Plan ways to adjust the trip as needed. If purchasing groceries is the number one goal of the day, do it first. Take along a cooler so that you can stop at the shoe store or the park afterward if time and temperament allow it. If the walk is what you really need and phone-in dinner sounds the most appetizing, go for it.
Favorite restaurants are a special treat, especially when the employees know you and your loved one. This is not always possible if you live in a large city, but whenever you can select a locale where friendliness and understanding abound. You will also need a site that is well lit with soft or an absence of music. Request a corner seat so that you can enjoy a conversation, even though often it is circuitous, repetitive, and straining.
You may need to do the ordering of the meal. Ask Dad, “Do you want your favorite pancakes?” a non-threatening suggestion that eliminates some confusion as opposed to “What sounds good?” This may just be too big of decision. Plus you may have opened the door to food that requires cutting (sometimes very difficult) or items that are extra sloppy. When the food comes, you may have to provide additional assistance, always presenting it with dignity. “Would you like that soup in a cup for easier drinking?” “Here’s the syrup, Mom” before she can dump here juice on the French toast. Or, “Would you like a little help cutting that into smaller bites. Mine was sort of tough.”
Maybe a bib is necessary – sneak it on and wear one too, if that makes your loved one feel more comfortable. Or just tuck a napkin in where needed. Or grab the “devil-may-care” attitude and let spills ensue. Who cares, as long as no one is burned? Remember that you have your handy note cards in your pocket, the Patience please. My loved one has Alzheimer’s disease cards. They really work. When I have had to share these cards with individual’s with wayward stares, the reaction has always been quiet, self-abasement and a soft apology. Impatience and gawking are replaced by sad eyes. Most people want to be kind and understanding. You may just have to teach them how.