Monday, April 23, 2012

New Perspectives On Dementia

After the events in this post happened, a friend recommended I read the book Dancing with Rose by Lauren Kessler.  While the book is more about Alzheimer's Disease rather than dementia, there was still some practical advice in there that I think I will find useful in dealing with my own mother's issues.

The book deals with Ms. Kessler's progressing attitudes about Alzheimer's while working in an assisted living center and how she uses her new attitudes to atone for how she unsuccessfully dealt with her own Alzheimer's-ridden mother years before.

I thought the book was well-written and quite an easy read, although some of the subject matter was painful as I hoped I wouldn't have to deal with some of the things one deals with with an Alzheimer's patient.  At this point, there is no sign that Mom has Alzheimer's, and I hope it stays that way.  But that doesn't make her dementia issues any less difficult to deal with.

What the book did for me, though, was alter my perspective, and I think that will serve me in the long run.  I highlighted a bunch of things I found useful, and I share them here:

" At [the beginning stages of Alzheimer's] - the memory loss, slight confusion, something's-not-quite-right stage - people often cover up the symptoms or learn to compensate, and...refuse to see the signs."

This was certainly me.  Although I knew Mom was having problems, I kept trying to dismiss or rationalize them.  I think a lot of people do.

"There are some problems finding just the right word, a decreasing interest in the world, some indifference to the normal courtesies of adult life....Retention and recall suffers.  Normal routines are forgotten...Modesty disappears."

"Alzheimer's manifests itself differently in every person and progresses at very different speeds."

"When [my mother] clenched her teeth against a spoon or fork or straw [when I was trying to feed her], I took it personally.  She was rejecting my help.  She was rejecting my love.  She was rejecting me.  Why did I think that what she did was all about me?"

I'm also learning that if Mom gets upset with me for trying to help her, I just have to remember that it's not personal.  Learning to just let any irritability or anger roll off of me makes it a lot easier to deal with.  Mom may be more upset with her own condition than with my trying to help her deal with it.

"The residents depend on me.  Their world is very small now...and I am in charge of it all.  What is left to them is the warm, dry clothes I dress them in, the cup of coffee I offer, the tape of I Love Lucy I put in the VCR, the hug as I pass by to do another chore.  What is left, because it is so little, takes on great significance."

I'm trying to concentrate on the small and simple things I can do for Mom.  Yeah, maybe her not being able drive or her inability to remember words or to do things she's supposed to do is frustrating to both her and me, but the hug I can give her or the Scrabble game I can play with her and my ability to help her with something she is no longer able to do herself is invaluable because it actually means more now.

"Then I had a brainstorm.  Maybe I could break through and communicate with her if we were in the same moment, her moment."

This was a big "a-ha" moment for me.  The quote refers to a woman the author was dealing with who thought she was a student in school rather than the old lady she really was.  The author realized that if she tried to connect with the patient in that moment - that reality - rather than trying to convince her of the actual reality as the author saw it made it much more easy to connect with the patient and communicate with her.

Rather than trying to correct Mom or contradict her, I try to still help her but in the reality she sees.  It's more important for me to help her than to be "right," I'm learning.

"The more frustrated I become, the more agitated she becomes.

"At the Alzheimer's conference I went to, the experts talked about this.  They think that those with the disease might develop a hypersensitivity to the emotional state of those around them, a kind of elevated emotional intuition to compensate for their diminished cognitive skills.  That means that at least sometimes those scary unwanted behaviors - agitation, violence, verbal abuse - are actually a reflection of the fear and agitation of the caregiver."

I really think this is true.  The more calm and gentle I am with Mom, the more calm and gentle she is with me.  If I get agitated or frustrated or upset, I do think she senses that and feeds off of it.  It's so much easier to deal with her issues if I let go of my own negative baggage.

"...I did know that Alzheimer's often removed or muffled inhibitions, and that thus free from constraint, a person might say or act in a way that seemed inappropriate or even bizarre."

"Susan says - and I believe - that the elderly, sick or healthy, crave human touch."

"Touch is vital when dealing with folks who may have limited understanding of words."

This was an interesting one to me.  I knew Mom got lonely, and although we are a very touchy-huggy family, it hasn't really occurred to me how much a hug or a caress or kiss might mean.  I think I should perhaps double my efforts on that front.

"After months of reality orientation, I managed to accomplish only two things: I made myself miserable, and I made my mother irritable.  I see relatives do this every day at Maplewood - disagree, contradict, correct, challenge.

"I know they mean well, just as I meant well.  I know they think they're helping.  But they're not.  They are actually doing harm.  A Cleveland social worker by the name of Naomi Feil noticed that repeatedly correcting those with Alzheimer's made them withdrawn or hostile.  Not surprisingly, they sometimes become combative - no one likes to be contradicted all the time - or paranoid - why is everyone always saying I'm wrong? - or simply stressed.

"Suppose, Feil thought, caregivers (family members or professionals) adjusted to the person with Alzheimer's rather than trying to force the person to adjust to them?  Suppose caregivers tuned in to the reality being lived by the person with Alzheimer's rather than trying to force another reality upon them?"

"And so, you go where that person is going.  You don't challenge or contradict or correct.  You listen.  You respond in a way that encourages conversation.  Feil's validation therapy is practical, sensitive, intuitive - and mind-bending.  When you practice it, you are not only keeping stress levels down and opening channels of communication.  You are not only respecting the dignity of the other person.  You are actually being forced to consider that a person with Alzheimer's might be doing important life work right in front of you."

Again, this goes back to suppressing the temptation to correct or contradict my mom.  I'm realizing more and more that it is far less important to fight my mother when I know she is mistaken and far more important to just help her, even if it means giving in to her reality.

"This is a woman who graduated from college in 1948, a woman who figured out how to be a feminist while Betty Friedan was still working it out.  Does it matter, really, that she forgets when lunch will be served?"

The above quote is about a well-educated patient the author dealt with.  She did many great things before succumbing to Alzheimer's.  I love the statement that, with all the woman had done and been in her life, was it really that important that she could no longer remember when lunch was served?  Are the things my mom forgets and mis-remembers really all that important in the long run with all that she has done and been and still is in her life?  I'm beginning to realize they aren't.

"What I see, what I've experienced, is old people, healthy and sick, living solitary, silent lives; old people made to feel as if they need to apologize for being old, for clogging up the works, for showing us the future we don't want to see."

This was a great one.  For so much of this process, I've sometimes thought selfishly about how it is affecting me or inconveniencing me and wishing Mom could just be the way she was.  But I realize it's probably more about not only seeing my mother become somebody different, but about how it makes me think about my own mortality and my future as an elderly person.  I felt the same way about my dad.

"It certainly shows me that the family treats them with respect, that the family sees the person and not just the disease.  It shows me that the family has not given up."

I do need to be reminded to see Mom as a person and not a disease because, well, she is.

"I have long understood that reality is subjective..."

"When I allow myself to accept those other realities...I begin to experience a paradigm shift.  It is a shift away from disease, disability, and dementia, and toward 'personhood.' ...that 'the person comes first,' that attention to personhood rather than pathology could, and should, revolutionize Alzheimer's care."

This was a big one for me, too. Mom's reality, even though it sometimes contradicts my own, doesn't make it any less real to her, and who's to say I'm right about what is real and what isn't? It reminds me of the musical Man of La Mancha, where everyone around him thinks that Don Quixote is crazy, but in his idealized reality, who, really are the crazy ones?  And some people even succumb to his reality because it is a better one, in their opinion.

"We are so focused on words..., on the act of talking, that we have forgotten how to communicate without them.  More than that, we think there is no communication without words - which, of course, means that we believe we can't communicate with those who, in the later throes of Alzheimer's, have lost most of their language."

I'm a big "word" person, and I do often catch myself thinking words are the only way to effectively communicate, but, of course, I know that is not true.  Mom's not yet in a place where she can't communicate using words, but she does forget words.  I need to remember that there are, indeed, other ways to communicate.

"If we take over the task for [the Alzheimer's patients], we take away their independence.  If we remind them too insistently, we erode their self-confidence.  So we cue them with a gentle prompt, the subtext of which is you probably would remember this anyway, but... It's the way you'd remind your spouse to pick up a quart of milk on the way home.  It's all in the tone of voice, in the offhand manner, subtleties that are absolutely not lost on these residents."

This is a good one, too.  I have negative trait in that I often try to take over duties because otherwise I'm afraid they won't get done correctly.  It is hard at times, but I try very hard not to micromanage my mom.  I do try to gently remind her in a way that suggests it's something she would have done herself anyway.  I try to let her have as much independence as she can for as long as she is able.  I think it's important for her self-esteem and self-worth.  Yes, it sometimes would be easier to pay her bills myself or such, but she is still able to do it, and really, is it more important to have convenience or to have a mother who still feels she has a purpose?

"...I close my eyes and let her lead."

I have to learn to trust my mom more.  Her judgment may be impaired at times, but she is still capable of so much, and I need to stop sweating the small stuff.

"Not to conflate the beginning of life with the end, but babies confront similar challenges to those faced by people with Alzheimer's.  Thrust into a world they do not understand, surrounded by strangers who make noises they cannot comprehend, awash in alien sights and smells, babies have a lot to handle.  The world must seem to them much like the world appears to a person with Alzheimer's.

"...I bet it also makes a difference, maybe a huge difference, that babies, unlike the elderly, are constantly hugged and held and stroked and smiled at.  We do a lot of touching at Maplewood.  Susan believes every person needs to be hugged every day and that some of our residents may not have felt the comfort of human touch for years.  Still, the pat on the shoulder or squeeze on the arm or peck on the cheek cannot compare to the enveloping, nurturing world many infants are lucky enough to experience."

Again, this illustrates the importance of touch, and I want to stress that this does NOT mean we treat the elderly like children.

"'You can't hold on to them forever,' she says. 'Everything can't stay the same.'"

Part of life is getting older.  People change - physically, emotionally, mentally.  It's just the cycle of life.  We spend so much time fighting it when it would be better to just accept what we can't control or change.

"It must be the nowness of this disease that, in stealing the past and obscuring the future, forces us, the healthy and the ill, to stay in the moment."

As an actor, I am always supposed to be staying in the moment.  It makes for much more believable and realistic acting.  Mom sometimes lives in whatever moment she happens to be in.  I should appreciate the moment rather than worrying about the future or dwelling on the past.  That's good advice for life, in general, I think.

"...the essence of a person is their heart, isn't it?"

"When we lose our mind (our memories, our coherent thoughts) do we lose our humanity?  If we keep our 'heart' (our emotions, our connected-ness) do we remain, in essence, who we always were?"

Again, Mom is not a disease; she is a person, and even though who she was does not always correlate with who she seems to be now does not change the fact that she is, in fact, the same person she's always been at heart.

"...part of me has come to think of Alzheimer's, despite its obvious horrors, as a disease of freedom.  It's not just memory that one loses.  It is inhibition.  It is pretense.  The thin layer of civility that forces us healthy people to operate with equanimity even when we are tired or crabby or don't like someone or just want to be left alone - that's gone, too.  What remains is some unvarnished, unprotected self, maybe the self a person would have been had culture and society, gender and class, manners and mores not overlaid it.  The buried self, the unlived self."

"Alzheimer's is a detaching disease.  It detaches people from their memories, their selves.  We can look at that as tragic and awful or we can change the frame.  ...Consider Zen..., which is all about clearing your mind, detaching from your thoughts, grounding yourself in the moment.  ...Well, that's Alzheimer's."

I like these quotes.  It helps me see the disease of dementia from a different, more positive, perspective, much in the same way I learned to see my dad's physical disabilities in a positive light.

"They just have their own way.  It's like they're living at a different speed."

"You can choose instead to see the pleasure they are experiencing right now, at this moment."

We can lament who our parents were when they were healthy.  We can worry about what they will become as the disease progresses.  Or we can see what they are enjoying now and be grateful for the joys we share with them now, in this moment.

Anyway, it was a good book.  I, too, recommend it for anyone who is dealing with dementia or Alzheimer's in their lives.  It's a good perspective-alterer.

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