Granville was the kind of man who spoke his piece, but never dismissed yours.  He was an upstanding man who lived his principles.  He’d do everything he could for you; well beyond the capacity of others.  Indeed, I and members of my family have enjoyed accommodations and many, many meals with Granville and Sherree over the years.

Only a month ago, I spent an afternoon with Granville clearing trees from his property. He worked hard, loved his country, and served as a model of the love of God here on earth. I’ve written about him many times in ElderBlog‘s pages. He was a man as close to our family as family could be.

We lost Granville early this morning. I am surprised by the tears in my eyes, but shouldn’t be; I loved Granville and can hardly believe the earth can continue to spin on its axis without him here.

I have been my parents’ eldest son for fifty-nine years, and their caregiver since 2005. In the past six years I have chronicled their conditions and stories in ElderBlog and, since Pop’s death in 2010, have focused this writing almost exclusively on Mom. A quick recap: medical professionals had diagnosed her as having Parkinson’s Disease and Dementia. We’ve seen plenty of evidence of both over the years; had no reason to doubt. And each disease is degenerative.

But Mom began to improve shortly after that fate-less Easter Sunday. After some weeks in Nursing Rehab, she returned to her own private Assisted Living room and from there continued her recovery. By the time her big 80th birthday party came around in July, Mom was fully able to appreciate all the people and plaudits that came her way. And since then, she has shown still increasing cognitive ability. Her long-term memory was always good while the short-term was not. Now both are good. She’s keeping up with the news and performing complex tasks routinely.

There were times in the past when I’ve allowed myself to wonder about Mom’s major medical maladies, usually only for a moment. Then it’s back to regular programming. But since about June, I’ve increasingly doubted the Parkinson’s diagnosis. After a number of years, you should be seeing other conditions forming as a result of the medication. They never did. And Dementia doesn’t get better. So how do you explain why Mom is able to do math in her head?

I’m not claiming miraculous healing, though the fact that our bodies work at all is a miracle in my own mind. But in the past several months, it has become harder to reconcile the diseases with the reality: Mom is doing great. I’ve allowed myself to wonder if she needed to be under the constant care of medical staff in an Assisted Living situation.

Then, two weeks ago, Mom announced to me that she felt able to live independently. After a moment’s surprise, I agreed.

Please understand that I only want what’s good for my mother. As her caregiver, it is my job to encourage her compliance with the best counsel of her doctors. At the same time, it’s my job to defend Mom against medical mis-judgments borne of lack of information or due consideration. But I’ve been conditioned over the past decade or more to think of Mom as deteriorating. And it’s been six years since I had to learn about the several levels of elder care. So our agreement about her abilities now required a re-loading of old data into my immediate mental reach.

The next level up for Mom is Independent Living. This is where you live in an apartment-style place, get one big meal a day in the dining hall and prepare the rest yourself. The setting for this is often a Continuing Care Retirement Community (CCRC), where Assisted Living, Nursing Rehabilitation, Skilled Nursing, and sometimes “Memory Care” (Alzheimer’s) are all together in a campus-like series of buildings. These levels of care can also be found in different combinations, or even separately.

From past experience, I felt it necessary to find a complete CCRC. The reason: if Mom ever needs a higher level of care, the CCRC guarantees that a bed will be made available to her. I don’t have to scramble all around tarnation looking for one.

There are half a dozen CCRC’s in this county and, to my astonishment, each had single-bed Independent Living apartments available. (My experiences over the past six years have shown that beds of any kind are very hard to get. But because of the economy…)  I screened them down to two, and went to visit one.

“Rustic Acres” (a pseudonym to protect Mom’s privacy) rests in a pastoral setting in a tiny town half an hour north of here. The building in which I found the ground-level Independent Living apartments looks like the nicest deep-woods lodge you’ve ever seen. I spent a few hours there on Saturday, and I brought Mom there on Monday.

She loved it instantly.

The facilities and opportunities available to her here are impressive and plentiful. Before we’d ever expressed intentions of moving Mom into the place, residents welcomed her and told her she’d love living there. We were treated to lunch in the common dining room. Her fish and my meatloaf were as good as home-made.

The apartment Mom selected has a bedroom, living room, kitchenette, full bath, and lots of closet space. She’ll have more than twice the number of square feet as she now has in Assisted Living. And she has a screen door to…

…a porch; a huge, private, covered porch. From there and from her windows, all Mom can see is a lovely lawn and a deep forest. We were told that wild animals are frequently present.

Mom claimed this place for her own. She’ll want a rocking chair on the porch, of course. But that’s for guests. For herself, there will be a cushioned rocking couch where she can sit and read or just lie down and bask in her beautiful surroundings. Mom thinks she’s hit the lottery. I think she’s right.

—–

Why is it called a medical practice? There may be a tighter Greek definition, but the popular definition is that medicine is not an exact science. Sometimes, a diagnosis can be made directly from a blood, urine or physical test. Sometimes, the practitioner has to work through a process of elimination. Sometimes, it’s trial and error. Sometimes, the patient responds to a medical solution; or not.

And sometimes, you just plain get it wrong.

There may be a dozen reasons for Mom to develop tremors. When the neurologist examined her years ago, he came back with a diagnosis of Parkinson’s. Maybe the same reasons – or a whole ‘nuther set – are responsible for Mom’s declining cognition. When a specialist examined her, he came back with a diagnosis of Dementia. Each diagnosis is for a degenerative disease. Dementia doesn’t clear up like a cold; it sticks with you and deepens. You don’t get better from Parkinson’s; you get worse – and then you die.

One of a number of drugs is prescribed for Parkinson’s patients. After a few years, certain negative effects should result from the combination of disease and medication. This never happened for Mom. And she hasn’t tremored for a couple of years now.

People who once couldn’t choose between Taco Bell and Chipotle don’t just wake up one day and start working through complicated logic problems. But Mom’s ability to do exactly that has been strengthening for some months now.

What can we deduce from this? Nothing. We’re not doctors. So I took Mom to her beloved, long-time internist. We had three questions: 1) Can you certify that Mom is capable of living independently? 2) Parkinson’s? 3) Dementia?

The doctor, who has the benefit of knowing Mom really well to begin with, did his assessments and came back with confirmation: ‘Yes, she’s capable; Dementia, not so much; and Parkinson’s? Let’s not be ridiculous.’ This, by itself, was cause for celebration. To learn that there isn’t a dark cloud hanging over you after all is a wonderful thing. Mom’s medications were then examined, several were lopped off, and now she’s got less in her system to slow her down.

—–

It wasn’t easy getting here. It took a lot of patience and lowered expectations. It can be accurately said that Mom has never had it as good as she’ll have it at “Rustic Acres.” World War II interrupted what should have been a normal childhood. Transplantation to America presented new challenges. A fifty-nine year marriage to a less-than-stellar husband tarnished what should have been a full and happy life. Then medical problems piled up in old age.

It took a long while for Mom to find her self after Pop’s passing. But she has now found enough of it to be able to claim independence. And the turnaround in her health is nothing short of remarkable. Putting it all together, she’s ready to take this next big step.

So early next month, we’ll load up a truck with her belongings, pick up some things we will have set aside at the furniture store, and move her into a new life of freedom and happiness. I see her thriving and growing; enjoying life on earth almost as much as she’ll someday enjoy life in heaven.

• Caregiver Village is dedicated to building better health, using an innovative, engaging virtual game to inspire better self-care, teach stress management skills, and build more positive attitudes about caregiving.
• Caregiver Village is dedicated to increasing happiness, by helping caregivers connect more with others, choosing their caregiving journey and encouraging mindful support of each other.
• Caregiver Village is dedicated to easing frustration, by linking to resources caregivers need to make a tangible difference in their lives.
• To achieve such an epic change it will take a true Village – a Caregiver Village – reaching out, inviting friends, family and acquaintances to join with us as we raise our voices, affirm our choices and change the world of caregiving today.

Caregiver Village seems to be a fun, relaxing, interactive and informative place. Full disclosure: membership is required to gain full access to the many activities and resources available in Caregiver Village. Initially, the membership is free. It eventually converts to a small fee. My sense is that caregivers will find the value fully worth the cost.

Some of the lesser bills have been received and paid already.  We now have the bill; the one from the hospital with all of the big numbers.  It’s in the tens of thousands of dollars.

Mom wanted (demanded!) to know the final cost and I told her.  I also told her how it would all be paid.  Thankfully, we’re going to wind up paying only a small fraction of the total out-of-pocket.

Mom considered this for several days.  She also remembered that my father spent long months in agony while being treated with antibiotics before finally passing away last year. She remembered deciding then that she didn’t want to suffer the same fate.  She put all of the factors together and told me quite earnestly that she never wanted this to happen again.

“You never want what to happen again?” I asked.

“I never want to be exposed to all of those machines again.  I don’t want to receive all of that treatment again.  I don’t want to spend that obscenely large sum of money again no matter where it comes from.  I want you to see to it that this won’t happen again.”

I explained to Mom that it is my role as caregiver to see to it that she is as comfortable as she can be without my playing god.  What she was asking me to do defied that definition.  She held her ground.

So I went pragmatic.  “If the same thing happens again (you’re found unconscious on the floor), the Piedmont Place medical staff is going to follow set procedure in rendering immediate care, and will have you transported to the hospital where they will follow procedure in determining causes, and seeking and implementing solutions.  This is what they’re supposed to do.”

“I don’t want them to do it.”  Mom was serious.

Rather than argue with her, I decided to pursue the issue elsewhere.  My first contact was with our lawyer who not only didn’t say she couldn’t get her way, but did say that the state provided a legal document which ensures that she does.

It’s called a MOST form – Medical Orders for Scope of Treatment: a physician order sheet issued by the state of North Carolina Department of Health and Human Services.  MOST asks the patient to select the level of intervention to be given in each area of treatment.  The state mandates that the patient’s doctor complete and sign the document in the presence of – and at the direction of – the patient.

I was surprised at this development to say the least.  It took away my arguments in opposition to Mom’s wishes, and it put me in a very uncomfortable spot.

—–

My mind raced with the possibilities.  I could see the dire circumstance when a medical professional would say, “Your mother needs (this, that or the other thing).  And as her Caregiver and Healthcare Power of Attorney, I would be obliged to say, “No.  Check your charts for the MOST form.  Mom does not want that kind of treatment.”  To my way of thinking, this is the same as me saying, “Let her die.”  It seemed to me that I was at least on the edge of playing god.

I could see the medical professional stopped in his tracks; prevented by a piece of paper from doing what he knew to be necessary to save a life; to do what he believed to be the humane thing; to do what he was trained to do.  I imagined the impact such a scenario would have on him as a person.  And what if his belief system differed from Mom’s?  Would he be obligated to follow his convictions or hers?

And what of the moral argument?  This God-fearing woman was essentially signing her own death certificate.  She’s playing god, and forcing my complicity.  Knowing the end of someone’s days is God’s job, not Mom’s or mine.  Would this displease Him?  Would He shut us out of our eternal rewards?

—–

Is a MOST form different from any other advance health care directive?  Is it any different from a DNR or a DNI?  Is the self-directed restriction of medical care the moral equivalent of suicide?

—–

Since the Bible forms Mom’s belief system, I went there for counsel.  It is my personal belief that the myriad rules of The Old Testament were necessary before the time of Jesus.  I bring this up to explain why I did not consult The Old Testament.  I believe that the teachings of Jesus provide all the guidance we need today; specifically Matt22:37-40 (CEV) in which Jesus says:

“’Love the Lord your God with all your heart, soul, and mind.’  This is the first and most important commandment.  The second most important commandment is like this one. And it is, ‘Love others as much as you love yourself.’  All the Law of Moses and the Books of the Prophets are based on these two commandments.”

That’s all we need.  The Son of God said so.  But the closest He gets to mentioning suicide is the “love yourself” part. 

A century later, the Apostle Paul wrote (1Cor3:16-17 The Message)

[Y]ou are the temple of God, and God himself is present in you…No one will get by with vandalizing God’s temple…God’s temple is sacred—and you, remember, are the temple.

In its proper context, Paul is saying that God will deal harshly with someone who harms another.  A bit later (1Cor6:20 The Message), Paul wrote:

The physical part of you is not some piece of property belonging to the spiritual part of you. God owns the whole works.

The context for this second scripture comes a little closer: he’s saying that we should not do things that are harmful to ourselves.

All of this is a long way to go to find an answer to the question: Is the self-directed restriction of medical care the moral equivalent of suicide?  And perhaps now we should add the question: Is suicide necessarily an act of self-loathing or self-destruction?

I am not nearly smart enough to answer either of these questions.  I think the answer lies in the interpretation or belief system of the individual.  But I do know that today’s medical technologies were not available to God’s children a hundred years ago, or a millennium ago, or in Jesus’ day.  There cannot be a reasonable person alive who would think that God disapproved of the deaths of all of His children for all of time because they failed to use technology to sustain themselves beyond their natural lifetimes.

God never intended for humans to last forever.  We know this because He did not create an earth of sufficient size or resources to sustain all of humanity forever.  The notion is ridiculous on its face.

Let’s approach the matter of morality from a different direction.

God knows everything.  There are many biblical references to support this.  He knows the beginning from the end.  He knows what’s in our hearts and minds.  He’s known what our decisions would be since before He even created our species.  If we accept this to be true, then He must know that Mom’s heart is filled with love for Him, and that her choice is driven by her best reasoning and purity of spirit.

—–

What about the impacts her decision might have on others?

Life is built into us.  By that I mean that it’s in our DNA to live; to survive.  And because we are necessarily relational beings, our hope is that those who are close to us will similarly survive.  When someone close dies, we deeply feel their loss.  There is little relief in knowing that it is a certainty that each of us will one day die.  The manner of death, therefore, is a non-factor in the emotional aspect of losing a loved one.

The first principle of medical practice is ‘do no harm.’  The practitioner’s training and experience then endeavors to do more than just no harm; they work to do good.  There isn’t a single one of us whose life hasn’t been touched to the good by myriad hard-working, well-intended doctors, nurses and aids.

But these highly trained professionals are also human beings with many of the same values as the rest of us.  How would one of these deal with orders that essentially say: ‘Don’t do what you can do?’  I can’t begin to know.  But the fact that these good people spend their decades-long careers continually dealing with life and death suggests that they do find ways to cope.

—–

The meeting was set and Mom dressed up for it.  Lisa and I walked into her room followed shortly thereafter by the head nurse, the section nurse, the social worker and the doctor.  Mom was undaunted by the number of souls crowded into her room — all focused on her.

The doctor conducted the interview.  She explained the choices available on the MOST form and the consequences of each choice.  She asked Mom about her wishes and recorded them on the form.  “Comfort measures” and only short-term antibiotics were selected as the desired treatments.  Great pains were taken to emphasize the meaning of each selection.  At one point, Mom went so far as to take over the meeting to explain her wishes at length.  If nothing else, she proved that she was of sound mind at the time.

The professionals in the room understood the proceedings without question.  I, on the other hand, had many…the questions I’ve approached above.

While I am now fully informed and armed with an official document as backup, I am still somewhat uncomfortable with the prospect of using its powers someday.

For her part, Mom is content in the knowledge that her wishes – for her body to comfortably expire so her spirit can rise into heaven – have been sanctioned and will, most likely, be followed.

God knew since the beginning of time that it would be this way.  I’m guessing that He can’t wait to see her.

It sounded, at first, like complaining, and Mom never complains.  “They serve too much food,” she said.  “Too many starches, too much salt.  Not enough green leafy vegetables.  The meals are almost never served hot enough.”

And there were complaints about other aspects of service, too.  Ice poured into her water pitcher at midnight.  Emptying the waste basket at 5am.  Medication at 5:30.  How’s a person to sleep?

And then it was my turn.  Mom complained that I blow into her room like a little tornado, check stock in the refrigerator, check stock in the bathroom, gather laundry, spend only a few minutes without anything fresh to say, and then go to conduct business with various members of the staff.  And when I drive her to church, well, I don’t talk much then, either.

When we completed an in-room conference with her doctor the other day, I asked to speak with the doc in the hallway about another matter.  Mom thought, “Why aren’t they talking about it with me?  It’s my health.”

Mom’s point was that among the people with whom she interacts frequently, she isn’t being respected.  No one listens to her.  No one knows what she thinks, what she needs or wants, how she really feels.

I asked a question: “When someone asks how you are, what’s your answer?”

“I’m fine.  Everything’s in God’s hands.  Have a good day.  God bless you” (or a number of variations on the theme).

“Right,” I said.  “And when the head nurse asks how your are?”

“I’m fine.  Everything’s in God’s hands.  Have a good day.  God bless you.”

“Right, again.  And I’ll just tell you that I get the very same answer whenever I ask how you are.”

I continued.  “It’s a wonderful thing to be able to assert that everything’s alright all the time.  It’s self-affirmation.  It’s a statement of faith and submission to the Almighty.  It’s an inarguably good thing to live in a completely positive state.

“But my question is this: After getting the same answer a dozen times, why would anyone bother to ask you how you are?”

Mom’s mentation level has been very strong since her hospitalization in April.  She understood my point and acknowledged her contribution to the problem.  At the same time, I pledged to be more transparent with her both about my own affairs and about her healthcare.  I told her that I was excited about this new way of communicating; excited to see what good things would come of it.

Mom is an experienced speaker.  Years ago, she would drive all over the region to tell her life story to those who’d invited her.  Later, armed with his learner’s permit, Michael did the driving.

Knowing that I attend several Alzheimer’s support groups, Mom thought out loud that she’d like to address these groups; to tell them, from her side of the issue, what it was like to have her ability to think questioned at every turn; to live in an institution; how she felt about the treatment rendered by her caregivers.

Rick Phelps

She then realized that the speech has already been given.  It comes in the form of a posting on the wall outside the head nurse’s office.  Ten Requests of an Alzheimer’s Patient was written by Rick Phelps who suffers, himself, from the disease.  This, of course, is one of seventy forms of dementia.  Rick’s is early-onset Alzheimer’s.

Ten Requests of an Alzheimer’s Patient

PLEASE BE PATIENT WITH ME
Remember, I am the helpless victim of an organic
brain disease which is out of my control.

TALK TO ME
Even though I cannot always answer you, I can hear
your voice and sometimes comprehend your words.

BE KIND TO ME
for each day of my life is a long and desperate
struggle.  Your kindness may be the most special
and important event of my day.

CONSIDER MY FEELINGS
for they are still very much alive within me.

TREAT ME WITH DIGNITY AND RESPECT
as I would have gladly treated you if you had been
in this bed.

REMEMBER MY PAST
for I was once a healthy, vibrant person
full of life, love and laughter, with abilities
and intelligence.

REMEMBER MY PRESENT
I am a fearful person, a loving husband, mother,
grandmother, grandfather and dear friend who misses
my family and home very much.

REMEMBER MY FUTURE
Though it may seem bleak to you, I am always filled
with hope for tomorrow.

PRAY FOR ME
for I am a person who lingers in the mists that
drift between time and eternity.  Your presence may
do more for me than any of the outreach of compassion
you could extend to me.

LOVE ME
and the gifts of love you give will be a blessing
which will fill both of our lives with light forever.

The other cake said: Happy Birthday Edith. Yes, we had a LOT of cake.

Her 80th birthday party was in the planning for months.  My sister, brother, his wife and Lisa and I had monthly planning meetings via Skype and VSee.  As the day grew closer, the meetings became weekly.  Together, we hatched a plan which would bring many of Mom’s intimates together to celebrate her life-thus-far.

Now, I’m guessing that some of you are experienced party planners, so you know well the logistics involved.  Challenge number one: identifying the intimates.  I’ve been collecting contact information from my parents and by other means for years and thought I had a pretty good list at 70 entries.  Not even close!  Before it was all done, 183 people (some of them couples) were fully sussed out.  That number would have been higher, but some are no longer with us.

Challenge number two: delegation of tasks.  It made sense that I – being local – would handle things on the ground.  But my siblings stepped up from their far-flung locations to contribute mightily to the effort.  We live in an age when distance truly doesn’t matter.  Invitations were conceived, created and mailed by Elizabeth.  Michael prepared a moving PowerPoint tribute-in-pictures.

Challenge number three: bringing it all together.  All of the prior planning was intended to make things just fall into place and, for the most part, things did exactly that.  It was a busy time, nonetheless.  We secured the main dining hall at Piedmont Place.  It seemed better there than anywhere else.  Chairs, catering, cakes, balloons…  We had the room for three hours total: thirty minutes each for setup and teardown; two hours for the party.  And the party turned out just great.

Close to a hundred people came from up and down the eastern seaboard: New Jersey to Florida.  Elizabeth drove down from Maryland.  My son Jeremy flew in from Oklahoma.  Michael & Joy came in from Germany, and their son Milton flew up from Brazil.  Between invited guests and family, I calculated that a total of 26,000 miles round trip – almost the circumference of the earth – had been traveled to join in the festivities.

The birthday girl

And the theme of the day was “Honor.”  In the runup to the day, I’d heard from so many of Mom’s friends.  “I’m honored to be invited.”  “I am honored to know your mother.”  “I’m honored to be considered her friend.”

We created a program wherein each of us three kids would pay tribute to our mother.  Michael’s was a perfect table-setter.  Elizabeth talked about the values and manners Mom had placed into us.  I had a few words of my own, and then had the privilege of leading the room in a rousing “Happy Birthday to You”.  Even Mom shared a few thoughts and words of appreciation for everyone gathered.

Part of the crowd listening to a personal story from one of Mom's many close friends

But I think the highlight of the day was the time given to our guests to share their stories.  One after another, they came to the mic and spoke lovingly of the inexhaustible effort, fervent prayer, and endless hours on the telephone invested in them by our mother.  To a person, they thanked Mom for the enormous contributions she’d made to their lives.  Many of these words were spoken through tears.

Now, a week later, Mom’s room is still festooned with colorful bunting.  She is moved to speak about her many encounters with loved ones at the party, and of her life-long experiences with each of them.

Truly, hers is a life well-lived.

The family after-party party at Olive Garden. Front row (l to r): Elizabeth, Mom, Jeremy. Back row (l to r): Lisa, Me, Milton, Joy, Michael.

Every word I’ve written has been true.  And yet, when you see her now, you’ll wonder what I’ve been smoking.  My mother is a picture of health.

Mom’s eightieth birthday is coming up, and lots of her friends are coming to visit.  They’ll find remarkable how sharp her mind is; how well she remembers small details from years gone by; how quick she is to smile and hug and be the person she’s always been.  They’ll leave feeling like they’ve had a meaningful encounter with the same woman as thirty, forty or fifty years ago.  They’ll question my mental health.  Why?

Mom walks for exercise through the hallways of her Assisted Living facility for up to two hours a day.  She pops through open doors to spread sunshine to residents therein, and then moves on to the next open door.  She has developed meaningful relationships with the medical staff and others who watch after her.  Everyone knows Mom, and Mom knows everyone.

If you thought of her as if a diamond, you’d notice that Mom has a few new facets.  She has crafted her schedule of daily activities to include viewing the evening news.  She really wants to know what’s going on in the world and she likes to discuss what she’s seen with whoever’s available.  Mom still plays bingo twice a week not just because it’s fun, but because it exercises her mind.  She even wins, sometimes.

She’s reading a biography of St.Francis of Assisi.  Next up: The Pilgrim’s Progress (pub.1678) by John Bunyon.  No light reads, these two.

Mom is excited about seeing so many of the people she’s known for so long, and I’m excited for her.  Mom’s in a place where she can fully appreciate the love to be poured out to her.  And she’s just giddy with the prospect of giving that love right back.

—–

ElderBlog serves to inform you of Mom’s goings-on.  It also serves to record data to better inform me for when I’m asked questions by medical professionals.  With that in mind…

Mom’s ankles were very swollen as I drove her to church two Sundays ago.  I honestly don’t know how she even got her shoes on.  Mom, of course, said it was no big deal.  But I know that such things are often indicators of other underlying problems.

I brought the issue to the staff who made some adjustments to Mom’s medications, but the ankles were still swollen last week.  I shook the medical tree once again and a doctor paid Mom a visit yesterday.  He discontinued two meds — Norvasc and Florinef — and started a new one: Enalapril 5mg.  He has also re-ordered that her blood pressure be taken every day.

This, I suppose, is why medicine is called a practice: you keep trying until you find the treatment that works best.

The WanderGuard ID Departure Alert System

The anklet, of course, is the security precaution affixed to Mom’s left leg: the WanderGuard ID Departure Alert System.  You win one of these little prizes if you are deemed a “walking risk.”  A walking risk is someone who might one day up and walk out of Piedmont Place.  That would be a touch embarrassing for the facility, and more than a little dangerous for the expeditionary patient.

Mom’s adventures with the anklet have been documented in this blog before: here, here, and here.  Having one means that any time you get near an exterior door, the door locks shut, and an 80-decibel shriek alerts staff that an inmate is making a break for it.  (Just kidding about the “inmate.”)  It’s on you 24/7, and only a specialized tool can remove it.

“It’s an abomination,” Mom says of her WanderGuard.  She’s had one for months followed by a few blessed weeks without, followed by months again with, and so on.  It was last removed about a month ago.  Only a week later, it was on again.

I tracked down the RN responsible for this device to ask what’s up.  It turns out that the facility’s policy is to not require an anklet for its patients.  Every quarter, certain key staffers meet and evaluate each patient’s potential for walking out of the place.  In the last meeting, a staffer noted that Mom had to ask for directions back to her room once in recent days.  This lapse of memory was an indicator that she had the potential for exiting the premises.  Such is dementia.  On went the anklet.

I have influenced the judgment of medical professionals before; like when the handicap walker was prescribed for someone with a falling risk.  That made no sense to me.  I presented my case to the doctor and won.  Mom is again scoring frequent-walking points.  Or the closely-supervised shower.  I hatched a plan, advocated with the Occupational Therapist, and won.  Mom is again a happy daily showerer.

I have not attempted to influence professional judgment regarding the WanderGuard.  I don’t have a strong-enough case, and they could be right.  So Mom continues to suffer the indignity and inconvenience of wearing the thing.

When I visited her yesterday, Mom gave me the usual short list of needed things.  Among them, more clear cellophane tape.  I promised to bring it tomorrow.  She then proceeded to explain what she needed it for; an explanation I didn’t understand.  So she showed me.  Hiking up her pant leg, she revealed the WanderGuard taped to her skin high above the ankle.  It was an odd sight, but one that smacked of genius.

Mom explained that when she walks, the device bounces against her ankle causing chafing and irritation.  Taped up this way, the bouncing problem was solved.  But she had run out of tape.

I found myself complimenting her on the cleverness of this solution.  At the same time, I allowed myself — for a moment — to doubt the diagnosis of dementia.  Only a spot-on person could come up with this.  Reality returned.  I called in the nurse who called in the social worker.  They tried to develop some kind of fix that didn’t involve adhesives clogging up pores.  Tomorrow, they’ll try some more.

In the meantime, I’ll purchase a wrist sweatband.  I’ll suggest that Mom slip it over her foot onto her ankle, and let the WanderGuard rest on it.  I think the irritation will be eliminated.

Of the genius-ity of my idea: like mother, like son.

Mom’s been back in her comfortable surroundings for several weeks now, and frankly, I can’t remember when last I saw her as functional.  Her routines are well-established; she wants for nothing.  To use her favorite phrase: “All is well.”

Except that it isn’t.

Mom informed her night nurse this week that she would no longer take her prescription medication for dementia: Aricept.  Mom’s reasoning was that the drug was making her sleep too much.  This news didn’t set right with the nurse who brought the problem to me today.  Together, we looked up the drug and learned that sleepiness was not among its side effects.  After some discussion, we speculated that Mom was feeling poorly about sleeping so long and so late these days.  We examined her sleep medication and developed a plan to help us learn what’s really going on after Mom gets her nighttime meds.  Settling that, I went in to talk with her.

Me: “Mom, you’ve stopped taking your dementia medication.”

Mom: “My memory’s fine!”

Me: (to myself) How would you know?  (To Mom): “Your memory has been fine because you’ve been taking Aricept.”

Mom: “I don’t need it.”

Me: “You do need it.  Your long-term memory’s great, but your short-term memory (is a hot mess) isn’t so much.  (She nodded in agreement.)  Mom, this med helps your ability to think.  The nurse will bring it to you again tonight, and you should begin to take it again, okay?”

She said that she would.

Then I asked about her sleep meds.  Mom said she was stunned to learn that she wasn’t getting Ambien anymore.  In fact, Ambien, which works just fine for lots of sleepless people, didn’t work well for Mom at all, and we began adjusting sleep meds months ago.  Now she’s getting Trazodone — used off-label — which is working perfectly to ease her to sleep and keep her sleeping until she’s well-rested.  Sometimes that’s 7 or 7:30am.  Then she gets up, opens the blinds, and spends another hour resting in bed.  She loves this part of her daily routine.

I went back to the nurse and called off our elaborate sleep-detection scheme.

—–

Mom’s strongest visible trait is charity.  For as long as I’ve known her, Mom has worked hard to do for others.  I am witnessing the resurrection of this trait, and am not crazy about what I see.

One resident needs a picture hung on her wall.  Her family won’t do it.  So I do it.  No problem.

Another lady needs a tarnished silver picture frame cleaned up.  Her family won’t do it.  Mom asks me to bring in some silver polish.  I’m beginning to see a pattern.

Another lady is scratching her CD’s because they don’t have covers.  Her family won’t bring any.  Mom asks me to bring in some covers.  Red flags are flying.

Will this one day progress to our paying room and board for someone who’s family won’t do it?

Mom is attempting to solve the problems of others without realizing that her dementia-driven neighbors will always have new problems to be solved.  In her right mind, Mom would ultimately feel taken advantage of (though she’d never admit it).  In her current mind, she doesn’t see that at the end of this rainbow awaits another hot mess.

I found myself in the unkind position of explaining this to Mom today.  The experience — both for her and for me — was something akin to picking up a blob of mercury with welding gloves.  I couldn’t get through, and she couldn’t understand.  Such is the way of dementia.

That said, both therapists will sign off this Friday, and on Saturday, we’ll move Mom back into her own comfortable room in the Assisted Living section of Piedmont Place.  She’ll abide there, I’m sure, with a new appreciation for the activity and noise levels which are markedly less than those in the nursing rehabilitation section.

She’ll also be able to re-establish her life routines; those daily markers which serve to maintain her sense of stability.  Mom will watch her favorite inspirational shows on TV while eating breakfast.  She’ll rejoin her friends in the dining hall for lunch and dinner.  She’ll spend part of the afternoon in the garden taking in the fresh air, and she’ll stroll the hallways each evening.

Mom has abandoned her oatmeal-for-lunch-and-dinner regimen because its desired effect, regularity, is being achieved through the use of her old friends Activia and prunes.

The hallucinations appear to have abated somewhat, but are being monitored by medical staff, nonetheless.  This was discussed in a quarterly care-plan meeting today.  We agreed that no harm was being done to her or to others, so the present strategy is to wait and see.  The hysterical laughter continues unabated, however.  Nearly everything is the absolute funniest thing Mom has ever heard or said.  It’s almost as weird as the hallucinations.

In contrast (sort of), Mom claims to be spending an awful lot of time crying.  This started while still in the hospital a few weeks ago.  She’s always quick to emphasize that these are happy tears, and that they are part of the release she’s feeling from the oppression under which she has lived her life.  But crying is crying, and this, too, will be watched by medical staff.

The big news: Mom feels strong enough to allow visitors again beginning next week.  She’s hoping that the pent-up demand for face time will not result in a sudden crush of guests; she knows she’s not that strong yet.  This Sunday, she wants me to take her to church.  And on Saturday, of course, it’s the big move to her own room.  So, the coming days will be busy for her.

One sore spot for Mom is that her showers have to be personally monitored by staff.  This has been necessary for many months and is a result of her propensity for falling.  I came upon a brilliant (Thank you!) idea today and discussed/negotiated it with the Occupational Therapist.  Here’s the deal: Piedmont Place will purchase a ‘tub seat’ the correct size for Mom’s private shower.  As the name implies, Mom will be able to sit, thereby minimizing the risk of falling.  Mom will inform the head nurse that she’s going in for a shower; no personal monitoring required.  The nurse will understand this as a signal to check on Mom in about fifteen minutes to make sure she hasn’t fallen.  Of course, if Mom gets dried up and dressed before then, she’ll call off the hounds with another visit to the nurse.  Slick!  Mom deeply loves this plan.