Just as with a toddler, it seems that the second you step into the car or a restaurant, it is time to go to the bathroom when you are caring for a loved one with Alzheimer’s disease. While it has gotten a little easier with more locations offering “Family Restrooms” that are bigger and allow either or both sexes in the room at the same time plus they are more private, you will not encounter this luxury everywhere you go. It is essential to plan ahead and to be prepared.
Try to select places to visit that have quiet, well-lit bathrooms. Wandering down a dark hallway and into a darker restroom with blaring music can set life into a swirl of angst. It will only take one visit to such a restroom to have you commit yourself to not making the same mistake again.
Avoid locals with just one or two stalls. Often the trip to the restroom is an emergency and although many kind individuals will permit you to cut into line, others just don’t understand why it is impossible to wait. You know that with a victim of Alzheimer’s, many things no longer make sense, especially standing in a long, often odorous line.
When possible, select the handicap stall. It is wider so you will have more room for navigation and there is often a shelf for hanging your bag and for removing essentials like wipes and clean clothes if the restroom journey develops into wet or soiled pants. This is one reason to always carry a change of clothes and wipes along in your backpack. Backpacks are roomy so you can toss in the necessities and since they sling over the shoulder or over both shoulders, your hands are free. Those with Alzheimer’s disease often present trying situations and you need every tool available to assist you.
Easy, pull-down pants with elastic rather than snaps, zippers, and belts simplify the next step. Remember you and your loved one are out, in a strange place and even if you have visited here a hundred times before, it may all seem new to someone with dementia. As you turn her around to be able to sit down on the toilet, you have induced a semi-confrontational position. Face-to-face and up close can feel pushy and scary. Worse you now must tug down pants while often the victim senses invasion of privacy – and it is. You’ll tug down while she wrestles the pants up in a mini-tug-of-war. Once you get them down, try to push them close to the floor and out of reach of your loved one. This prevents some of the on-going reaching to snap the pants and yank them upward. There are more struggles on the horizon so you want to solve and/or eliminate as many as you can.
When you have won the pants pushing match, it is time to coax your loved one to lower herself onto the seat.
Remember: strange place, strange events; possibly strange noises and now, with your loved one may be nervous and touch distraught, you are forced to shove her down onto a cold, hard, unfamiliar toilet seat. Maybe you have a liner down but often this placement has been the last of your worries or it has slipped into the toilet or onto the floor. At this point those with Alzheimer’s tend to buckle their knees and the rigidity adds to the seating tussle. Plead, ask kindly, try nudging gently, and never lose patience. Anger never works for the best results. With enough time and ample persistence and fortitude, you will succeed. Nine times out of ten she will now wonder what is going on and say, “I don’t have to go.” She may or may not, but as with a child, murmur, “Please try.” Although I find adult diapers humiliating, you now understand why sometimes they become fundamental apparel.
With men it is sometimes easier because you can abolish the turn, pull, and shove technique, but sometimes getting the penis out and directed into the toilet or urinal are impossible and potty stains appear on pants and shoes. The hand dryer may solve the issue or you can also count on your change of clothes – quick pull-ons only. While I only cared for my mom and sister in the delicate toilet tango, it is hard to imagine me with my father’s private parts in hand as I drag and point toward the target. I could do it if I had to, but, wow! What a role!
“Number 2” adds to the discomfiture of all, especially the caregiver. Most of us willingly sign-on for care of those we love, but dirty adult pants can bring heaves and horrors. The change of clothes, the large container of wipes, and a damp washcloth are all tools to help you survive. A strong shot of drink may be necessary as well. I joke here, but I know how overwhelming toileting can be.
If there is no Family Restroom, a dilemma is also, “Which one do I use?” when you and your loved one are of the opposite sex. Men in Women? Women in Men? Either way adds turmoil to an already tumultuous task. Remember those note cards, the ones engraved:
Patience Please. My Loved One Has Alzheimer’s
Keep a stash handy in your pocket and bag. The message works wonders, halting the gawkers who upon reading, flee from your sight, but more importantly, bringing out the best in others who offer you a wet paper towel, offer to go buy clean underwear and/or pants, or who just give a smile of support and ask how to help.
The final stressor arises when your loved one has finished, he is wiped and the pants are about to be pulled up when suddenly the toilet explodes in a whirl of swirling flushing water. Droplets are sure to target any exposed parts adding to the noisy, splashing twirl. Whoever invented the automatic flush in public restrooms never took a loved one with Alzheimer’s disease into such a bathroom. It seems too that the wildness of the eddy is not easy to determine. If she stays seated, will the splattering subside? If I drag him up quickly, will we be safe for the spray? Life as a caregiver is full of revelations as you gain wits of wisdom. You have to laugh or else you will cry. Plus laughter eases tension that eases the pain of the entire process.
As the disease progresses and trips out with your loved one become so difficult that they feel impossible, accept the aid of others who will “sit” with your loved one while you shop, dine out, or just enjoy a quiet reprieve. It will strength your determination and resolve so that you can better carry on.