Let's
face it, Alzheimer's patients often say things that seem nonsensical
to us; or, say things that leave us exasperated, confused,
frustrated, and sometimes angry.
The words they say often
cause us to react negatively.
The issue: are you really
listening to the person living with dementia? Or, are you immediately
reacting, or overreacting to their words?
Once I took the
giant step to the left and entered Alzheimer's World the words my
mother was saying took on a new and entirely different meaning for
me.
I actually started listening to her instead of over
reacting.
I
want you to imagine yourself calmly leaning up against the wall and
listening to your Alzheimer's patient. While leaning up against the
wall try and think about what the words they are saying - really
mean.
You can also do this exercise while sitting in a
comfortable chair and imagining an encounter, episode, or incident
you had with your loved one. Or, by imagining a recurring episode in
your head.
Example. The dementia patients says, I want to go
home. Home of course can mean many different things.
In the
case of my mother, Dotty, home meant home to south
Philadelphia. At the time while my mother was saying this over
and over she lived in Delray Beach, Florida, and had been living
there since 1977.
Dotty lived in the same exact place, home,
from 1977 - 2012. So you would assume home meant our home in
Delray Beach.
But during the period from 2004 - 2008 when she
said she wanted to go home, she wanted to go home to south Philly a
place where she had not lived since 1943.
When my mother said
I want to go home to south Philly I might say something mean.
"Go
ahead, I'm not going".
Or, I might try to explain, you
are home.
Or, I tried some other wordy explanation.
How
was I feeling when Dotty repeated said, I want to go home?
I
felt crazy, disconcerted, frustrated and sometimes angry. On the
surface what she was saying didn't make any sense to me. We were
home. Hence the frustration etc.
On the other hand, maybe I
felt anger because I heard her saying she didn't want to stay with me
here in Delray Beach, and she didn't appreciate
the simple fact that I was taking care of her 24 hours a day, seven
days a week.
Maybe
that is what I heard. Do you ever feel like this? That your under
appreciated?
Eventually, I made it to Alzheimer's World and
started paying very close attention to the things my mother repeated
often:
like the word No,
Or, I don't know where he goes all the time (I didn't go anywhere),
Or, get out I don't want you here,
Or, I want to move back to south Philadelphia.
As I leaned against the wall and started listening it finally dawned on me that Dotty wasn't really saying I want to move back to south Philly, instead she was trying to tell me she wanted to feel safe and secure.
After
all, I can only assume Dotty felt very safe and secure when she lived
with her parents in south Philadelphia. She was also very happy. I
know this because she told me lots of good stories about when she was
young. Happy stories.
Once I figured out how to look beyond
the obvious and listen to what Dotty was saying, read between the
lines so to speak, I found that I was no longer disconcerted,
frustrated, or angered by her words.
I started doing two
things.
First, when Dotty said, I want to go home, I simply
responded, "okay we will look into it" or, "we will
have to go up there soon and look for a place". This seemed to
satisfy Dotty and we could move on.
The less words you say by
the way the better. If you use too many words it doesn't work very
well.
Once I started listening, I also started learning. In
this case I decided I was going to address the issue of safety and
security head on.
So I started putting my arm around Dotty and
saying things like, "I really like it here
in Delray Beach, this is a very safe and secure place to live".
Or,
wow, "its really cold today up in Philly, and here we are at the
pool, I bet they wish they could go to the pool with us. They are
freezing there butts off up there today". This usually made
Dotty laugh and smile.
I tried to layer it on thick every
chance I got. I also tried to put my arm around Dotty, my head up
against her head, and reassure her as often as I could.
After
2008, Dotty stopped saying, I want to go home.
But, on those
rare occasions when she did I though "uh oh" I better start
communicating some positives, I better get her out into the bright
light, and we need to do some things to reinforce safety, security,
and trust. I learned to cope and communicate.
Bottom line you
have to relax, listen, lean up against the wall and figure out what
your dementia patient is really saying. And then take some positive
action.
Just so you know, the result of creating a safe,
secure environment, by frequently putting your arm around your loved
one and reassuring them , by telling them it is the two of us now and
that you are going to take good care of them will likely create
the long term effect you are looking for - they will stop saying
mean, harsh, or nonsensical things. Or, say them less often.
I
cured our problem by listening, then communicating positively
with Dotty. Layer on the positive reinforcement, and get rid of the
negative you are laying out there now.
This might seem odd,
but I learned that in most cases you have to meet mean,
disconcerting, or hurtful behavior on the part of a dementia patient
with the exact opposite kind of behavior.
Be kind, understanding, and lovable.
You
do what I am describing and guess what is going to happen - they will
stop engaging in the undesired behaviors and start acting more like
you. Kind and gentle. You have to go first though.
This is how
you cope and communicate with an Alzheimer's patient - give them back
the exact opposite feeling and emotion of what they give you until
they stop.
Or, just keep on doing the same old thing for the
next seven years.
Always be kinder than you feel.
It
will work if you are patient and determined.
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