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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.
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