On tips in the approach of Alzheimer Disease, comment on a patient's testimony

On tips in the approach of Alzheimer Disease,
Ms Hendi LINGIAH, clinical psychologist, France.



The following text has been written by Richard Taylor, suffering from Alzheimer Disease (dementia). He gives his views everyweek on Alzheimer daily news website.

His testimony is not only an example of courage from someone who has to fight the disease everyday, but it is also the testimony of someone who has to face other's ignorance and misunderstanding.

The disease is in part a progressive disorder in the understanding ability, a brain disorder. But it seems that many people, non-sick, as they dont know or dont want to know more, oppose a “resistance” to learn and use their own understanding ability. Limitating then their empathy, maybe by fear, maybe by ignorance, maybe by helplessness feeling. Whereas for others "it is only old age, so no need to worry". Anyway, the result is suffering from each side.

By his contribution, Richard is letting us know, making us understand by giving tips to us, how to approach persons suffering from Alzheimer Disease. There is no perfect behavior, there is no perfect way to answer and everyday comes a new problem, everyday a new solution has to be found; so why not using our own understanding ability while we know some others cant.

Everyone is different; Richard is sharing with us his own peronnal experience. But when the relation to yourself and to your relatives and environnement is disturbed because of the disease, the first step is to accept it, which is already a big effort. This is the cost for each of us and for our society to live a better life inspite of the disease and with the disease, to assure welfare, respect and dignity to someone who is still and forever a subject, an individual.

The following text of Richard is pointed out the issue of stop driving for a person who is suffering from Alzheimer Disease; why someday it becomes a necessity, who decides about that, when and how to make it acceptable for the person, how to proceed, how to adjust your own behaviour. It is Not the solution but A solution worth to try. There is no perfect behavior, there is no perfect way to answer and everyday comes a new problem, everyday a new solution has to be found; so why not using our own understanding ability while we know some others cant.


Miss Hendi LINGIAH
Clinical Psychologist


Richards Views: The Best Way to Get Him/Her to Stop Driving

Several years ago while driving home from
teaching a high school class, I was suddenly aware
that I was steering my car across eight lanes of
oncoming traffic! I was following the white line -
not the one between lanes, but the one that had been
put there to temporarily redirect traffic to toll
booths which were no longer there. That was enough
to scare me. I voluntarily stop driving the next
day.

For many people, like me, who wake up each
morning and arm wrestle with Dr. Alzheimer's until
they fall asleep that evening, giving up driving is
the most difficult decision for them and their
caregivers to make ... and accept. What I did not
realize was that I was also giving up my personal
freedom - to come and go as I pleased, the
subliminal giant root supporting my resistance to
give up driving.

Some of us, people living with one of
the diseases of dementia (especially Alzheimer's),
are honestly unaware of a problem, and are totally
perplexed by the suggestion that our driving is less
than excellent. Understandably, we become quite
defensive when the entire family attacks us by
trying to take our car keys. This is probably not
the first time these family meetings have turned on
them. [And what about the family struggle to get us
to say aloud "I have Alzheimer's disease" or the
time they wanted me to change my clothes because
they didn't like the way I was dressed?]

All these defenses are constructed because we see
ourselves "under attack". Attacked by our own family
members! I'm not really sure why I am so opposed to
doing what they want me to do, but I do know I am
strongly against it. [Why do people keep accusing me
of acting as if I am paranoid? I'll tell you. I am
defensive, not paranoid, because you keep attacking
me!]

For many of us, we sometimes, or always, lack the
concentration to generate insights into ourselves,
We are the ones with the altered thought
processes. Why don't you figure this out for
yourself and adjust the ways you act towards me?
Instead, you again want me to act and think as I
did, like you, like you want me to. When will you
ever get over it. I have Alzheimer's disease!]
[If I could think like you now, I could generate
insights like this. But I can't!

Whenever possible, begin early in the disease
process, pre-prepare the person [me] for what might
be to come. "Ganging up" may
work for the family - but it doesnt work for me.
All need to agree that if and when that
time comes, it will be a consensus of opinion
(what/who/when/where/how) and all have determined
that it is time for me to stop driving.

You-all need to keep reminding me, lest I forget.
You-all need to keep reminding me of the
arrangements that have made to diminish the effect
upon my freedom to go when and where I want. Contact
members of the church, neighbors, friends,
volunteers who could drive for me, helping to
dissolve my fears of being stuck at home. They will
need to learn how to drive for me, and not drive me.
Offer to try out this plan - one day a week for
three weeks - to see if it works. Do it now, while I
don't see it as a threat. Go along with me to places
we usually go together. Let me go by myself to
places I usually go to alone. [We can deal with the
secret police issues later on when I need them.]
Build my confidence that there will be little change
in my lifestyle when I park the old mini-van for the
last time. And please do it one-on-one. Don't jump
me with the gang of seven. Don't leave it all to Mom
or Dad to drop the hammer.

Now what of those who are too far into the
disease process whereby this approach can't be used
- sitting in the dining room, surrounded by
uncomfortable family members? Everyone out of the
room! We first need to try this one-on-one, and it
needs to take place over a couple of weeks. Get your
story straight with each other. Get the support
network together while the conversations take place.
Offer to try it out to see if it works.

Use the "there is strength in numbers" approach
only as a last resort, not as a first, preferred
course of action. Don't threaten in hopes of scaring
me, unable to follow through. Don't just be firm and
not offer some solution for which you will take
responsibility. This isn't all about me [at least in
my mind it isn't]. It's about what you want, not
what I want.

Act now. It would be best not to wait until the
car is in the shop being repaired from the accident.
If you need proof to justify imposing these
constraints, we are both in trouble.

Perhaps this is not "the best" way to engage this
issue, but from my perspective it sure beats the
alternatives. Waiting to cross this bridge when you
come to it is definitely not the right road to start
out on. Early on, early stage, everyone creating a
family road map seems to be a better answer.


Source : Richard Taylor, Alzheimer Daily News