By Frena Gray-Davidson
Don’t think Alzheimer’s experts know any more than you about Alzheimer’s behaviors. They don’t. So, your guess is as good as theirs. And, speaking as a longtime Alzheimer’s dementia caregiver, frankly I think caregiver guesses are better than most other people’s. So there! In my workshops, I always encourage family caregivers to guess. If the first guess seems to be wrong, guess again. Always be prepared to try something new when dealing with solving a difficult behavior.
And, by the way, it’s only difficult for you, which is really worth thinking even harder about. Not that you don’t matter because, of course, you do. It’s just that sometimes we’ll label a behavior as difficult and then we’ll fight to stop that behavior. To retrain our person. To make them learn that it’s not what we want.
Boy, now there’s a way to make yourself feel crazy. When we’re specially stressed, we caregivers can get stubborn and locked into our own demands. That’s because of the tightening up we experience as stress. Weary, grieving and overwhelmed, we just don’t tend to say to ourselves, “Now, how can I find a better way to solve this problem?” No, we tend to mutter between our clenched teeth, “If he (or she) doesn’t stop doing that, I’m going to go crazy!” So, figuring out how to find a solution to any dementia behavior problem should be preceded by a warm scented bath, or a session at the gym, a movie you love and then your own self-consulting care plan conference.
So now let’s fast-forward to that relaxed state in which you can ask yourself, ”What exactly is this behavior about and how can I find a solution?” People don’t do things only because they have dementia. Yes, they do have short-term memory issues. And, yes, they are usually unable to do rational step-by-step thinking. Even given those two unfixable issues, people with dementia have a very wide range of possibility in the behaviors they demonstrate.
So, why is your person doing that particular thing? That’s what you have to make guesses about. Your person is targeted on doing what will bring a desired emotional result. That you don’t want them to wander is your problem. Even if you pointed out that certain things are dangerous for them, it means nothing. Why not? Because they don’t remember what the problem was with what they did. And anyway, they feel like that’s what they want to do. And you can’t fight dementia.
So, why does your Alzheimer Dad go wandering? Make some guesses. Ask questions. Ask him, and then ask yourself:
Is he bored? Probably;
Is he restless? Sometimes;
Is he stuck with absolutely nothing to do? Yes, often.
Is he just not used to being this person with dementia? Undoubtedly.
Think about the average person who has dementia. They’ve lost their previous life and have nothing to replace it. Caregivers can be so busy that those they care for are often left in a kind of limbo They can be left doing nothing, having nothing and unable to figure out for themselves what to do.
I always look at the problem things they want to do as their communication to us. So, a walker wants to walk. As my nephew would say, “Duh!” First, everyone else can go walking any time. Except for people with dementia. We even label their walking as wandering. That’s our caregiver jargon which says we don’t want them to do it. It’s dangerous for them and inconvenient for us. If we don’t help find alternatives, however, they will walk out when we’re not looking.
WHY DAD WANDERS
The biggest reason never stated for people with dementia wandering is that this is the way they can self-medicate their anxiety and sense of displacement;
That feeling of displacement drives them to walk out of the front door and straight off down the road, going forward endlessly. It is a feeling that instigates walking and it is dementia which keeps it going. Once people have begun walking, they tend to be unlikely to ask for help or directions and they tend to go straight ahead.
Boredom and restlessness also drive people out of their front doors to find presumably some kind of variety.
This is why the smart caregiver creates an activity plan. For your Dad, maybe he needs a drawer all of his own full of the kind of stuff that used to interest him. Maybe he was a handyman around the home. Then screwdrivers, nails, a hammer – all the equipment of fixing up might keep him happy indefinitely. Maybe a tool box all jumbled up with stuff he can sort out.
How about having him sweeping up the leaves in the backyard? Filling bird-feeders with seed? If you get him weeding, be prepared for the consequences of a person with dementia who no longer knows a weed from a treasured garden guest.
When we craft an activity plan for our family member with dementia we look for something which evokes what was familiar in a way that doesn’t hold to forgotten standards. And as the caregiver, we commit to letting go of our standards of perfection.
The activity works simply by absorbing the person. Sometimes, your Mom could wash and dry the dishes. So what if you have to redo them? Mom felt useful and helpful and it brought back to her a life in which she was the woman who held the family home together.
These activities fill time, yes, but they also remind people who they were when they did not have dementia. I doubt they think it through in that way, though. I suspect they simply feel a more peaceful, more settled sense of belonging.
The desire in the dementia wanderer is often simply to want to go somewhere, anywhere but where they are. In assessing problem dementia behaviors, we always look at both the obvious message and the metaphor. Dementia allows people to operate at a number of different mental levels all combining into this present moment – which in itself might actually be South Dakota, 1926, for the person with dementia. Time zones may blend as that person’s life has now blended into its own story, nearing completion.
How do we bring satisfaction to the wanderer? Well, obviously, an actual walking program is a great idea. The caregiver need not be the one to do this. Ask a family member, a neighbor, a high school kid you trust, a volunteer from the senior center – any of whom can be great company on a walk. Hire someone to do the daily walk – it’ll be a good investment.
To organize this, you plan it, you set the boundaries in time and distance, you train the walker who’ll go with your wanderer. You explain dementia. You prepare them.
Add to this, a driving program. Most people with dementia love a drive in the car. It’s the most active passive entertainment for an elder. It should probably end at an ice-cream parlor or a fruit stand or somewhere else involving food.
The company of others who also have dementia is often very comforting, so look for a good day activity program. How do you know it’s good? See if people are having a good time. Talking like friends. Enjoying the quality of the connection. Dementia is often a lonely condition. The actual activity almost doesn’t matter as long as it clearly connects people by the heart.
The goal of all this is to tire out your family member so that restless dissatisfaction does not speak so loudly to them. Maybe get them a good pet friend, one of those older pets that are so understanding and seldom get adopted..
By the way, don’t forget to secure your doors. You want to know when your person heads for the great outdoors. This doesn’t have to be sophisticated. The things people I know have used successfully have been:
a set of brass bells hanging on a door-handle;
that cheap set of buzzer and five activators that you can put on doors. Not at all expensive — I think around $7 and in most budget stores and hardware places;
a warning door chime;
an ankle bracelet that sets off a perimeter alarm.
Or for the cunning escaper, firmly locked doors, deadbolted and you have the key.
If your person does get out, unnoticed by you, of course you need to go find them. Before you do that, call the police and give a description. Ideally, you would already have lodged a photo with the local police station just in case.
If you have already tagged them with a GPS unit, then your search will be much easier. Check on-line to find great prices on personal GPS systems. It’s something you can tag on the back of someone’s pants each day, for example. Not in pockets or a handbag or wallet – which can be lost or stolen.
If you are looking for someone not tagged, know that people with dementia are most likely to simply continue walking in a forward direction. If you have straight highways from your door, I’d follow those first. If you’re calling out for them, call by name, not by role. So Frank, not Dad. That’s because they may be in a much younger time-zone state of mind where they weren’t a Dad.
I know you will already have got a non-removable ID on your person. Not in a pocket but on a bracelet, anklet or dogtag. You can get these from the Alzheimer’s Association but they’re much cheaper from your local Walmart or equivalent. Put on their name, something like “memory-impaired” and the most relevant phone number.
Have your emergency wanderer kit already – all the numbers, all the friends and neighbors who’ve already agreed to help. Call everyone. Don’t be embarrassed – people love to help in a real emergency.
May all dementia journeys be safe ones.
Raleigh Geriatric Care Management* www.rgcmgmt.com