Inkwell: Authors and Artists

    
Interestingly, the specialized dementia AL near me where a friend placed her
mother is an Arden Courts, part of the Manor Care chain (which just in turn
got bought by HCR).  Like Maplewood, it incorporates certain design features
like small "villages" with their own staff and dining rooms, unlocked doors
into a secure fenced yard for walking, etc.  And it also gives family
members the Naomi Feil book "The Validation Breakthrough," which Lauren also
mentions.  The staff have clearly been trained in that approach, too.

Giving out the book struck me as a smart idea.
  

    
When we were looking to move my mom from her room in the independent
living facility to an Alzhiemer's/Dementia specialized facility, I
checked out a few places.  One, in the town where I live, had designed
the hallways in an ovoid shape with railings so that the patients who
liked to walk (and could walk) never butted up against any dead ends. 
For some, dead ends would be a great source of confusion/frustration. 
Do you know of other innovative little tricks that staff will use to
either motivate, or make daily activities smoother for the patients and
staff? 
  

    
>>I'm wondering how many people in your
acquaintance-friends,colleauges,neighbors-are dealing with Alzheimers
in a relative and what your conversations with them are like.
>>Do people who know about your book see you as some sort of expert?Do
people recognize your name and tell you their stories?

I know very few people who have not been affected by Alzheimer's --
through parents, grandparents, parents-in-law, aunts and uncles,
friends of friends, parents of the people next door.  And yes, everyone
tells me their story.  I've received more than 300 emails from readers
-- probably 90 percent include personal stories.  At readings when I
was on tour, everyone who came to have a book signed told me a story.

And to respond to your other thought, Katherine...I think it would
help enormously if validation rather than correction was used every day
by everyone.  When it is your own relative and they are misremembering
a part of their life that you were a part of, it is a very difficult
thing to do.
  

    
It is WONDERFUL to hear that the Manor Care chain is spreading Naomi
Feil's work.  It shows not only that someone in administration is
versed in the literature (not always the case), but that the facility
is interested in empowering relatives (also not always the case) and,
most important, that the facility -- at least in this instance, and
probably other ones -- is thinking actively about the well-being of the
residents.  Hooray for them.
  

    
>>Do you know of other innovative little tricks..

The wide hallways with no dead ends is a great interior design
concept, Scott.  Protected, closed in-patios with always-open doors
leading out to them is another.  Also lots and lots of light --
natural, incandescent and fluorescent.  The Alzheimer's-affected brain
is very sensitive to shadows...interprets them as bigger and scarier
than they are, almost like crevasses.  

For activitiees...I can't stress music enough.  Maplewood also brought
in, twice a week, an exercise guy who led a stretching class (with
people sitting in chairs or wheelchairs) that managed to involve, on
some level, just about everyone, at all stages.  And animals!!
(Companion-trained animals, that is)...an amazing reaction from even
the most deeply demented folks when dogs visited.  
  

    

Other tricks/techniques I'd like to call attention to have to do with
understanding the dementia resident's declining ability to differentiate
one thing from another without substantial clues.

I am astonished when I see dinnerware with dense floral patterns in 
dementia facilities. I've seen so many residents struggling to get 
that thing they see on the plate off it and into their mouths. They 
grow unhappy, frustrated because no matter how hard they pick at it,
it can't be lifted. That's because it's a pattern in the plate, not
food on it. Similarly, a facility that's smart will provide dinnerware
of plain, bright colors designed to make the food on the plate stand
out. I've seen many dementia residents totally miss the mound of
cottage cheese on their white plate.  

Lauren, did Maplewood's planning include KISS as far as the table
settings? 
  

    
<<I can't stress music enough. >>

Finally!  My jumping in place!  Thanks for being here, Lauren - I've
read and enjoyed your book, cried a bit while you danced with Rose, got
smacked in the face with the correction v. validation discussion (oh,
MAN, is that hard in practice), and have my own karmic burden that I
seem to be working out in real time.  I'm thinking this is my 'toad'
incarnation - perhaps I can be a journalist/author in my next!

I sing with an organization founded by a friend, known as the
Threshold Choir (www.thresholdchoir.org).  Our primary service is to
sing at the bedsides of the dying and those in coma. We come together
in regional choirs for rehearsal, sing at bedsides in groups of two or
three, and every now and again, bring multiple regional groups together
to share stories, record, play, etc.  

At one of our playdays, a singer told the story of her mom's dying. 
She and her sisters were gathered round Mom, who'd been silenced by
multiple, massive strokes.  The sisters had grown up singing together,
with Mom, while doing chores.  So they decided to sing to her, as they
were all together for the first time in years.  

They were astounded when Mom started singing her part.  She could not
speak, but her singing was unaffected.  All the words, right on pitch,
in what had been her designated 'part'.  Blew them all away - what a
gift, for all of them.

I tell that story as often as I can (you guessed!), as the mysteries
of stroke effects/dementia/Alzheimers are unsolved and one just never
knows what can still be brought forward, if prompted.  

Closer to home, when my dad had three small strokes in late September,
I was asked to run a few 'tests' with him at various points in his
early recovery (who's the President?  what's the date? etc.).  I added
a few of my own 'indicators' - set him up to play gin rummy with his
grandson, whose 14 year old ass got whipped (math's still there!) and I
had him sing along with me.  Picked Home on the Range.  I'm delighted
to tell you that where, prior to the strokes, he would have had to
la-la-la through half of any song I picked, he had each and every word
on the tip of his tongue!  Cracked me up.  

Now we all know this is anecdotal evidence.  I'll take it and run with
it, thanks.  Let the great men of science figure it out in the lab,
we're on the front lines, and anecdotes are all I've got for now.

Glad you're here, Lauren.  I've got several dog-eared pages in the
book that I'll get in and comment on as I can - I'm a little busy here
- Dad with stroke recovery, sister dying of cancer, her 14 yr. old in
high school, and me - the whole dysfunctional family in one house. OY!
  

    

Oh yeah, I also want to concur with <spinner> and others that validation is
a great technique for connecting with somebody who has dementia.

For a while, my mom had a roommate who had dreadful afternoon bouts of
weeping. She was weeping because, she would tell anybody who's ask, "my
mother just died."

Of course, her mother had been dead for years. Those who tried to 
reassure her not to be sad, that her mom had been dead for ages -- well,
that didn't help at all. 

I used to sit with her and hold her hand while she wept. I said I was
sorry that her mother had died, that I understood how hard that is to
bear. I hugged her and rocked her, and after a few minutes I'd pull a
cookie out of my purse and give it to her. 

It didn't matter that her mother had been dead for years. The grief
she was feeling was real, fresh, and raw. That's what I figured I
was validating. 

The cookie was a great way to redirect her after the validation.

Lauren, can you talk a little bit about redirection?
  

    
(laura-mac slipped in while I was composing my post...)
  

    
Thank you, Laura, for those terrific stories. AS you know reading from
Dancing with Rose, I had one of those magic music moments with my
decidedly unmusical mother. And magic it was.  I wrote a piece a while
ago which will one of these days appear in O magazine (they contracted
for it, bought it and are currently sitting on it because it has to do
with DEATH...oh my, not that!!!)about a program started in my local
hospital -- but now international -- called No One Dies Alone. One of
the components is music.

Laura, it's amazing you have the energy (sanity?!) to sit and write
with all that is going on in your life.  I am in awe of yur strength. 
  

    
The house my aunt lives in now,the one she has settled into without a
recurrence of the paranoia that tormented her a month ago,has high
ceilings and many windows:except for one end of one hallway,the
outdoors is visible everywhere.She seems much more comfortable there
than she ever did even when she was used to the people at the other
house.

My aunt sings often,both songs that seem to go back to her years as a
camp counselor and director and songs that she makes up-she sings
herself through the steps of,say,getting ready to leave the house.At
least once a week we sing "Do your ears hang low,do they wobble to and
fro..." together.

I don't believe her new house has any visiting musicians;I think I
need to find some good plain folksinger who will swap for bread baking
or child-minding,then negotiate with the AFH to pay for regular
visits.(My aunt is very sensitive to being entertained down to,so to
speak-she is allergic to hyper-cheeriness.)

Lauren,I don't underestimate the difficulty of using validation with
one's own loved ones.I do think it might help people to move through
the correction phase,after denial has broken down,if validation were as
well known as Aricept.
  

    
Table settings...interesting.  It makes sense that floral patterns
would drive some people nuts.  At Maplewood the plates were beigy pink,
kinda like old calamine lotion. 

And about re-direction.  A very helpful strategy for someone with
limited short term memory.  If something is going south, some hurtful,
disturbing or out of control behavior and you can keep your cool, you
can generally defuse the situation by getting the person interested in
something else.  Sometimes I would just walk someone to another part of
the facility.  Maybe a cookie or a cup of tea, or helping me fold
laundry...anything that is a physical change from what was going on
before.  The re-direction works because of short-term memory loss.  The
person forgets what they were upset about.  This doesn't always work
-- but should always be a first strategy, I think.  At Maplewood almost
no one was on anti-psychotics or anti-depressants.  I think this was
because we had activities, had a place where people could "wander" and
did a lot of re-direction. 
  

    
RE: correction VS validation.  Is this a false binary?  I agree that
it makes little sense to correct our loved ones on every detail when
they grow increasingly confused, but where is the harm in trying to
ground them in a semblance of reality?  Some correction, done in a
positive manner, should be seen as mental exercise, and a form of
helping them validate who they are.  

It's a very difficult transition to watch one's parent reach the point
where they no longer know your name or even the relationship.  I
remember the feeling of loss at that moment when my dad didn't know my
name. In the last few months, my mother has followed suit.  I see
nothing wrong with reminding her that I am her son and not her brother.
At the same time, I find myself not wanting to ask her to tell me my
name because it will frustrate her if she can't answer.  In many
instances in the past, I have asked her probing questions to gain a
measure of her state of decline.  For example, I loved that she
remembered that I had just been on vacation.  I also know that, at some
level, she does know I am close family. 

In the same way that we reinforce the behavior of a young child when
learning to talk to help them acquire cognitive and language skills,
and a sense of relationships, I like to think that engaging our loved
ones with Alzheimer's/Dementia in a range of corrective AND validating
dialog, might help slow the deterioration and slippage.   




   
  

    

I'm sorry, Lauren, I can't help but respond to this.

> where is the harm in trying to ground them in a semblance of reality?

"harm" -- pointing out that you're a son, not a brother, may make you feel
better, but it won't help orient demented loved ones. Instead, it makes
them feel uncomfortable, unsure, disoriented, embarrassed. If they're
able, they'll usually cover up their distress quickly and you may not
notice the flicker of anxiety that passes over their faces, but I
promise you, it's there.

Reminding them of the "correct" relationship won't help cement it in
their minds, either. It's a losing battle, and it'll end up making you
and your loved one feel worse, not better. 
  

    
Plus, I think the analogy with childrenis misguided.  We're talking about
damaged brains here, not able to respond and retain the way healthy
children's brains can.

But people in the field tell me that people with dementia do remember that
you belong to them, even if they can't come up with the proper relationship
or name, for a very long time.  Lauren, did you find this to be true?  With
your Maplewood patients, or with your mother?
  

    
<<It's a losing battle, and it'll end up making you
and your loved one feel worse, not better.>>

Cynthia, I don't see it as a battle, because this analogy connotes
winners and losers. I'm not battling her, I'm engaging her in the time
she has left.  We all die, of course, and Alzheimer's/Dementia is a
particularly drawn out diffusive way to see a loved one go.

As with anyone we communicate with, finding common ground is crucial. 
There is rarely anyone we have more common ground with than our
parents.  So, of course, when I talk with my mother, I will say things
like "I understand that Aunt L. came to visit you on Monday." 

She may or may not remember, but it reinforces to her that her family
and friends still care.

Or, I will say, "I got to visit JL in Sweden, you remember him don't
you?"

"Oh, of course," will be her invariable reply.

I guess the thought of it somehow being inappropriate to tell Mom that
I am her son, not her brother, strikes me as not unlike Political
Correctness at its worst.  Of course the synapses are eroding for her,
but how do any of us know that such a dialogue won't help keep this
very primary essence of our relationship functioning for her?  

Of course, constantly correcting her would be futile and, as you
suggest, would make her feel bad. For example, when Mom insisted she
saw me out of the car window, I didn't correct this well-formulated
delusion of hers.  She was convinced. Then she looked back at the
mirror and wasn't so sure so she insisted that it had happened at a
different time.  This confusion and attempted rectification was of her
own making.  

On the other hand, my reminding her that I am her son, was an attempt
to help her remember something more basic.  

Much of our discussion in this forum has to do with quality of life. 
Helping Mom stay connected mentally to her larger sphere of family
while she is still able, is an enhancement of her quality of life. This
isn't about badgering her to be someone who she will never again be,
this is about engaging as much of her as is still there.  

Paula, I used the analogy of the child as a follow up to an early post
here.  I'm fully aware of the difference between development and
decline.  There are cognitively diametrical similarities in how we
leave our life and how we grow into our life. I think you missed my
point here related to the value of stimulation.  Gentle corrections can
be good stimulation for young children and those with this affliction.
 Why give up on anymore of our loved ones than we have to?    
  

    

> I don't see it as a battle, because this analogy connotes
> winners and losers. I'm not battling her ...

No, you're not. It seems to me that you're having a battle, though, a 
battle of acceptance within yourself.

Acceptance? Yes, at least that's how I see the whole "coming to terms
with my mother's Alzheimer's" issue. I fought it like crazy. I tried
giving her little "memory exercises" to keep her more with-it. I was
angry about the diagnosis, I've been depressed about it, I've struggled
against "giving in" to it. It's a lot like the Kubler-Ross "Five stages
of grief" thing people go through when diagnosed with a terminal
disease, except I've gone through it even though it's my mom who has
the terminal disease.

Battling with my own frustration and sadness and learning to accept
what is happening to her has been hard. The amazing thing, though, is
that as I've stopped trying to orient her to reality as I experience
it, I've found that both of us are happier. When she calls me "mother"
I no longer have any urge to say "I'm your daughter," I just smile
and tell her I love her,  because in the end, its the shared love
that matters, not the specifics of the lineage. 

Of course, I've been dealing with this for 15 years, so I've had a lot
of time to ... um ... well, to process the process. And maybe in your
mom's case, I'm totally wrong. Maybe she benefits from you reminding
her of your shared relationship. 

All of us facing this dreadful disease in a loved one have to learn our 
own path. There certainly are similarities from patient to patient as far 
how the disease affects them, but no hard and fast rules that can always
be applied. 
  

    
Wow.  Look at what happens when I don't check in for a few hours!

The reason we correct and repeat with children is because we want them
to learn. Correction and repetition are learning strategies -- and
they work.  But correcting a person with Alzheimer's doesn't teach them
anything other than the fact that what they just said was wrong. 
Correction doesn't re-orient them (or if it does, it is only for a
moment) or ground them in reality -- OUR reality that is. They may be
perfectly grounded in their own reality.  What correction often does is
makes them feel insecure and threatened, even paranoic. Imagine if
every time you said hello to someone, they told you they were someone
other than you thought they were.  

That said, I also agree with Cynthia's last remarks.  WE all have to
find our own ways.  These ways differ because the disease manifests
itself in very different ways, because our relatives' temperments are
different and because our relationship with our relatives are
different. I am not sure any of us should prescribe for anyone else. 
  

    
One other thing I want to mention:  A habit of correction over time
causes stress, chronic stress.  And guess what?  Chronic stress is a
leading cause of memory loss.
  

    
 So what about this idea that people with dementia know who belongs to them,
even if they don't know the precise relationship or can't retrieve a name?
I think many of us have seen this, seen someone's face light up at the sight
of a beloved, even if the beloved is your daughter but the demented person
calls her her mother.  It does seem like real recognition.
  

    
I want to put in a plug for caregiver support groups,which can be a
safe place to both cry and laugh.Some people in my group have come and
tried again after going to a group that left them feeling worse,so the
facilitator makes a difference.

I have also gotten lots of support from being in the elderpri
conference on the Well.

My aunt used to tell me angrily that she wanted to learn from her
mistakes,and it broke my heart every time.
  

    
<<All of us facing this dreadful disease in a loved one have to learn
our own path. There certainly are similarities from patient to patient
as far how the disease affects them, but no hard and fast rules that
can always be applied.>>

Thank you for your thoughtful response, Cynthia.  Fifteen years with
your mom is a different scenario than the year-and-a-half of my mom's
decline (and the five years before that with my dad). I used to do more
of the "memory exercises" with Mom, but have largely given up.  As she
declines, the grounds of engagement and expectation change, sometimes
very rapidly.  Two or three months ago she would call me by name, but
now she doesn't know that I'm her son.  Before I'm able to accept her
latest decline, I must first learn where she is in her cognitive
ability.  Every new visit with her is an adventure of sorts.  

Specifically, it wasn't as though when she called me her brother, I
immediately thought, "gosh, I'd better not correct her because of the
chronic stress this may cause."  Rather, my internal reaction was one
of "oh shit, now Mom thinks I'm her brother." It sucks to see each bit
of her go. And, I agree, that after recognizing diminishment, the only
option is to adapt and accept this on adjusted terms. 

Bottom line, our interaction needs to be done with kindness.  As
befuddled as they are, they are still sensitive humans, and, as Paula
suggests, there is that core recognition, the lit up face that tells us
they are delighted about our visit. My mother's decline is so
accelerated right now that it's not easy to know what to expect.
  

    
Paula emphasizes an important point about what "recognition" means. 
Note that "cognition" is in the middle of the word -- I think we need
to transcend that.  Recognition can be linked to logical thought, sure.
 But I also think, as Paula does, that it can be intuitive.  There is
something I would call emotional recognition.  Your relative has lost
the neural pathway to your name and the neural pathway to the word that
defines your relationship.  But for a long long time -- maybe even
until the end -- your relative has not lost the emotional pathway,if
you will...the intuiitive sense that you mean something to him or her,
that the two of you are connected. If that's enough for them, then it
has to be enough for you.  The biggest lesson I learned in all this was
the disease was not about ME, about what I wanted or needed or was
afraid of.  It was about my mother.
  

    
And speaking of plugs...If any of you involved in this conversation
(or you lurkers...) have connections at your state Alzheimer's
Associations or your regional chapters, I'd appreciate a mention of my
book.  I am doing quite a bit of traveling this spring, giving speeches
at conferences, etc. and would really like to do more, to spread the
word.
  

    

I've been touting your book all over the place, Lauren, and I'd love to come
to a reading if you're doing any here in the San Francisco Bay Area. Do you
have a listing online somewhere of your upcoming appearances?