sleep

TEACHERS AND STUDENT

Several years ago my friend Diana listened as Ken talked for a few minutes then crinkled her brow just a bit and whispered to me,  “Is he having memory problems.”  I replied that he was and had been diagnosed with Alzheimer’s.  We talked about people we knew in common who suffered from some form of dementia, the medical field’s lack of knowledge and the sadness of it all.  Reassuringly, she commented about the brain being such a wonderful organ that we should be able to educate another one of its parts: transfer the data he was losing to a healthy section so to speak.  I wanted to say, “You mean like a back-up chip for the computer,” but I didn’t.   Instead I just  smiled and thought wouldn’t that be wonderful.   She spoke with such certainty that I didn’t want to pop her bubble by saying that a diseased brain doesn’t have a good section.  With Alzheimer’s the brain wasn’t injured and there was no part that had any immunity from the tangles and plaque. Also, research has found that whatever it is that causes the brain to “die” is contagious. It spreads from one section to another.

Diana isn’t alone in her thinking.  When my friend Jayne stays with Ken during those times when I have to be away longer than I like, she tells me that she “taught” Ken during the afternoon, using repetition.  Over and over she would tell him that he is married.  (Something Ken often denies.)  Then she would continue to repeat my name to him as if teaching a toddler how to say please and thank you.  At the end of her stay and my return home Jayne was convinced that Ken had learned something.  And I’m not one to say he hadn’t.  It’s like asking someone with no memory, “What did you forget?”  If you can’t remember, how do you know what has been forgotten?  It would be the same thing with knowledge.   When he does recognize that he is, indeed, married then something has happened  to allow that bit of memory to return, if only momentarily.  Is that restored memory or taught memory?

When his disease began and I noticed his forgetting, I too found myself teaching him.  Perhaps it wasn’t teaching, but more of preserving what he still had.  At least making an effort to keep some of the fundamentals.   I would spread playing cards out on the table and challenge him to a game of concentration: turn over a card and remember where the match is.  He did all right.  Was he learning or was that part of his still-functioning brain?  Our granddaughter, Jessica, often brought her game of “Go Fish” when she came to visit and we three would play.  Again, he did okay, but then that was a few years back.  All of his responses were better before.

I’m one who likes to read in bed and I asked Ken one night if he would like me to read to him.    He was agreeable, listening for a while before dropping off to sleep.  Did he absorb anything? Did he even listen?  Did I plant information or thoughts in his subconscious?  Did he subliminally learn while sleeping?  I don’t know.   It’s interesting, even though I smiled a bit at Diana and Jayne for believing he could be “taught,” I’ve seen too many demonstrations and videos showing the steps of destruction occurring to his brain.  Nevertheless, deep in my heart I too have felt if I tried hard enough and talked long enough I could change not only what was taking place, but I could restore bits and pieces of his memory.  Did any of our efforts do any good?  Did I extend his memory for any length of time?  I don’t really know.

So what does he remember? Career skills must be deeply planted in memory because he likes to add numbers.  I doubt if he could design much of a building nor could he make any sense from a set of plans, but he can still read the printed word, add  a simple column of figures and can think about how much he should set aside to pay his bills (which are requests for money presented in “bill form” from our deluge of junk mail).  But on the other hand I see him forgetting that he lives in our house asking me, “When are you going to drive me home?”   In the real world I know that he won’t get better and with each day he will get worse, but it’s nice to hear encouraging words from people who care like Diana and Jayne — and so many others.  Thank you friends.

Originally posted 2009-05-02 05:42:54.

BROTHER-SISTER TUG-OF-WAR

Ken is sleeping longer now, but by ten in the morning I begin the waking process.  Opening our bedroom door and with my best cheery voice I call out, “Wake up sleepy head, it’s shower day.”   Moving across the room to pull up the blinds I am greeted with a grunt.   “Shower day,” I repeat.   “Not today,” he grumbled.  That’s a first from a guy who once showered twice on a warm and sweaty day.   “Okay,” I tell him, “it’s all right stay in bed a little longer.”

I was certain that when I returned in 10 to 15 minutes and suggested showering again he would be ready and willing.  He did not.  Taking his jeans and shirt into the bathroom, he shaved and dressed.  The next morning I went through the same routine, but again there was no shower.  He made excuses such as, “Why should I shower, I’m not dirty.”  It wasn’t two days, it was actually three because I have been scheduling his shower every other day.

I’m never really sure which of Ken’s three personalities I am waking in the morning?   Is it Ken, Mr. Hyde or is it Buddy?  All three are grumpy, but before Alzheimer’s Ken would have been up for hours.   Gradually the disease has put an end to Ken as a morning person and to make matters worse, he has developed shingles.  The sporadic pain plagues him with a vengeance all through his back and across the front of his upper torso.  The doctor tells me that when older people get the ailment it  usually stays the rest of their life.  It would appear that’s the case with Ken.

No matter which of the three personalities are present in the morning he still complains about pain.   In an effort to bring him some comfort, I tell him how sorry I am that he hurts.  He answers with, “It’s not your fault.”   Hoping to change his shower refusal to “yes,” I counter, “The warm water will make you feel better.”  And actually it does, but he answers, “No it won’t and it’s not your back.”   I leave him alone and return later to try again.  He is insistent, “No.”  It’s day four without a shower.  “You’re beginning to stink,” I tell him as he passes me in the hall fully dressed.”  “So do you,” he shoots back.  “No I don’t.  I took my shower.”  I’m losing this battle and I’m not sure what to do next about his personal hygiene.

It’s day five without a shower and Sunday.  Sleeping as late as he does we haven’t been getting to church.  In the past when I have greeted him with, “We’re going to church, you had better shower and shave,” he was always willing to shower before getting into his “good” clothes.   Even in his demented state he wanted to be at his best to enter the Lord’s house.

This particular Sunday I too slept late.  As we lay in bed I mentioned that we had been invited to our daughter’s house for an early dinner.  “You had better take a shower,” I said.  “Why?” he questioned.   “Because we’re going out and you need to be clean.  Remember?”  He thought for a moment then said, “I’ll see what mommie wants me to do.”  With that I knew he was 12-year-old Buddy, and possibly an even younger Buddy with his reference to  “mommie.”   Picking up on the clue I decided it might be in my best interest to take on a third personality for myself; that of his sister, Loretta.  I began, “Mom left me in charge today and she said I was to see that you took a shower.”  So, in addition to Carla, Mr. Hyde’s housekeeper/cook/caregiver; I am also Loretta, Buddy’s older, bossy sister.   Apparently, it all worked.  Buddy took a shower.

The shower problem might have been just a phase, a momentary pause in his personal care routine, but to be on the safe side I now suggest that he shower every morning.   It’s for certain that he won’t comply on a daily basis —  and if  he does that’s all right.   If not, then at least my chances of success are considerably increased.   Furthermore, when Buddy is present, I have also decided to take on the role of Loretta  and make every effort to address him as “Buddy” rather than Ken.  He seems to take comfort in hearing the “family” reference.   The top advantage of my being Loretta is that it will give me the authority to answer any “Why” questions.  As the big sister in charge I can just say, “Because mom said so!”

Originally posted 2009-03-16 05:05:58.

SWEET DREAM AND THEORIES

“Is he ever Ken?’ asked Jayne.  “You know what I mean.  Is he ever the Ken you married.”

“Not really,” I answer, “but he comes close once in a while.  If he goes to bed at a decent hour, before 10, and gets a few hours of sleep before I come to bed he sometimes wakes up a little and is as close to Ken as he will ever be.  He’ll say things like, ‘Hi.  Coming to bed?’  I answer him to the affirmative, but with caution.  He could be Buddy or Mr. Hyde wanting me to leave his room.   I climb into bed and say to my husband, ‘By the way, I love you.’  He smiles and says, ‘I love you too.  Will you marry me?’  ‘We’re already married,’ I assure him.  ‘When did that happen?’ he questions.  ‘A long time ago,’ I reply asking for a kiss goodnight.  He is willing and I kiss him gently.  A real kiss.  Then he rolls over and says, ‘Goodnight.’  That’s probably as good as it gets,” I tell Jayne in answer to her question, “and it’s nice to be able to go to sleep with kind words and sweetness.”

As I lay in the dark I picture his mind and the tangled mass of nerves that cause him to be demented.  I wonder if during sleep the nerves relax a little, possibly becoming less tangled and perhaps some of the plaque covering his brain sluffs off leaving a clear, but temporary,  path for thought.   Awake I continue to think about solutions — even miracles — as my absolutely non-medical mind looks  for answers.

When my mother had Alzheimer’s I compared her with my father.  They were married nearly 70 years.  She was afflicted, he was not.  At that time they thought one might get the disease from cooking food in aluminum pots and pans.  Mama had a complete set of hammered club aluminum cookware which she had saved for faithfully until there was enough money for its purchase.  She cooked everything in those utensils, fried hamburgers on the club aluminum grill and flipped pancakes on Saturday mornings.  She had Alzheimer’s.  My father ate everything she cooked, but when he died at 90 his mind was as clear as a bell.   Nor do we three girls have signs of Alzheimer’s, but the jury is still out on that.

Then I wondered if it was water.  It seemed to me when I observed my mother’s consumption of water, she was well under what was suggested as daily water intake.    Often she would say, “Would you bring me a half glass of water.”   My sisters or I would comply.  Remembering those requests, I reasoned she wasn’t flushing her system properly.  My dad, on the other hand, drank lots of water.  Good theory, I thought to myself.  But when my uncle (my mom’s brother) died, also an Alzheimer’s victim, he wife mentioned to me that he drank water like no one she knew.  Bad theory.  We might even say, it didn’t hold water.  I suppose, though, that the pondering, the questioning, establishing theories, reading and wondering helps us, as caregivers, cope with this awesome task.  Who know, maybe one day someone will come up with a theory that ends the mystery.  We can only hope.

Originally posted 2009-02-13 05:59:26.

Shhhhh! My husband is asleep

old man sleepingin bed

Even while asleep this caregiver gets comfort from her husband with Alzheimers; sleeping in the house.

I sometimes feel a bit isolated when the caregivers leave, but not for long.  Ken is in bed and usually asleep as the evening stretches before me.  Yes, cabin bound, but I don’t feel I’m alone in the house.  I’m not.  My husband is sleeping in the next room.  I can sit with him and read or I can talk to him if he’s awake.  Awake or asleep he doesn’t make much sense, but that’s all right.  If something entertaining is on the tube, I can sit next to his bed and watch TV, holding his hand while he sleeps – or not.

Alzheimer’s makes life such a dichotomy: at times I state that he is gone and other times when we are alone he is with me.  At night, his very presence gives me a semblance of companionship – the same feelings I had years ago when his day had been long and hard, and sleep beckoned earlier for him than usual.  He was at home although he was asleep.  If someone called I would simply ask if it was important because Ken had a rough day and had gone to bed early. I suppose that’s the feeling I have now at night:  my husband is here, but he went to sleep early.

It’s with that feeling I go about my evening – even laughing at myself for the lack of logic in some of my actions.  Ken’s caregiver, Ben, is very good to me and very considerate.  Waste Management comes to our neighborhood on Wednesdays to collect the contents of our various waste containers so Ben puts the cans out on the street before he leaves each Tuesday evening.  He also makes sure the cans from the house have been emptied as well. However, there are times when a forgotten waste basket filled with paper needs to be added to the recycle can.  I think nothing of taking the trash out to the street before I go to bed – even at midnight.  I have no fear of leaving the door open and dumping my small amount of paper into the recycle bin for pick up the next day because my husband is in the house.  If I lived totally alone, even though I am comfortable in my neighborhood, I wouldn’t empty the basket until daylight.  How rational is that?  Am I safer because he is here?  In his condition, certainly not, but because my husband is here,  I feel safe.  I know my reasoning defies logic, but feeling safe and feeling that I’m not alone is not only a comfort, but a battle fought and won, and it’s a blessing to have someone with me in the house, even if that someone could do nothing if a bad guy jumped out from behind a bush.

Bob DeMarco in his Alzheimer’s Reading Room blog often talks about AD victims still being here, and physically DeMarco, of course, is right and in some cases an AD victim’s cognitive awareness is in and out.  In reading about his experiences with his mother, Dotty, I realize that where she is with her AD is not where Ken is with his AD. During his awake time when daylight fills the room he is seldom the Ken I have been married to for more than a half century.  And when I look into his hazel-green eyes and see no response or recognition, and I’m sure others will agree, that’s when I have that feeling he is not here – he is gone.  But other times, and during those long night hours, as lacking in logic as it is, he is here with me — but we mustn’t disturb him because my husband is sleeping. And his presence fills my home and my heart.

Originally posted 2011-11-05 03:25:19.

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