The Elder Report - “This is my life now.”

[Read the previous Elder Report here.]

The first thing we resolved was the skunk smell.  Jennifer and I got our critter control people involved.  It was a disappointment.  Although the skunk is now gone, it's exit had little to do with their involvement.  It eventually left probably because of the coming of spring.  Time to move on.  We did manage to seal-up the house so that future skunks or raccoons can't get in.  Critter traps caught a raccoon around the trash barrel but that was basically a worthless catch.  Except for the exclusion work, the effort was a waste of money.  The situation basically resolved itself, although we had no way of knowing that at the time.  The faint smell of skunk still lingers at entrance to the house and under the deck, but mostly it has dissipated, especially compared with how it was in the beginning.  Throughout the rest of March and into April the clothes of anyone entering the premises were permeated with the odor.  I don't smell like skunk when I go home now, but for several days this spring I did.

Dad ended up in a nursing home.  At first we thought his rehabilitation would allow him to come back home but he had a secondary stroke which pretty much took away the strength in his legs and his ability to balance.  As a result he can no longer safely transfer from the bed to the wheelchair or the toilet.  That is a huge problem.  It requires someone to be with him whenever he tries to walk.  But that doesn't stop him from trying.  My sister tells me he has fallen more since he's been there than anyone else in the entire home.  Luckily (or maybe not) she was able to find a private room at a local facility.  Surprisingly, he seems contented with his situation.  This is the same facility where his own father and mother resided late in their lives.  He knows several of the staff and enjoys cutting up with staff members.  A familiarity has settled into his life with his sense of humor intact.

Cognitively, at first he was about 75% for himself in the mornings then, as he tired, he was about half himself.  He would talk total nonsense and make up things that simply were not happening.  He thought he was driving his truck around and that we needed to go to the parking lot to get it.  There were some mysterious “papers” we had to go sign somewhere.  Slowly, his cognition improved and he is almost 100% today.  He is essentially functional in knowing who he is, where he is, who everyone else is and understanding why he can't come home.

In order to keep the farm maintained, I leased the property to a local farmer who dad knows very well.  I sold all of dad's cattle to the guy, with dad's understanding and permission.  I was expecting some possible push-back on that but dad understands.  I told him that “I don't think you're going to be able to look after your cattle this year.”  He simply shook his head.  He cannot be a farmer anymore, almost certainly for the rest of his life.

Other than a day-trip visit, he won't be coming home.  Although no one has bluntly said that to either him or my mother, dad knows that he can't live on a farm and do what he wants to do if he can't walk or pull himself into his truck or onto his tractor.  So, he is making the most of his situation.  He has taken an interest in the birds that come to the various feeders outside his window.  He has a good view of the sunrise every morning.

I visit with dad on Saturdays.  That's when I switch with my sister and let her come visit with mom.  On Sundays I still cover Jennifer's mom in the afternoon, which is an easy job comparatively.  Although, unfortunately, she is pathetically frail because she never attempted to do any of the home rehabilitation she was given to maintain her strength and balance.  She complains constantly and has an abandonment complex.  Her only love and effort in life is reading kindle books on her iPad.  You can still have a decent, intelligent conversation with her and we usually discuss a variety of topics including literature and psychology during my visits.

Avery's back home.  I hate it that she had to cut short her European tour but it actually worked out for the best, really.  She has been helping out a lot.  Taking my place for an afternoon with either my mom or Jennifer's mom now and then frees me up to tend to my own property, play with my codependent dog, and generally pursue what is left of my life.  Speaking of dogs, it turns out what we thought was Avery's dog “acting out” was worse than we expected.  Her dog and Jennifer's dog too, coincidentally, have varying degrees of kidney failure.  Jennifer and Avery gave them daily infusions of fluids for weeks.  I had to assist a couple of times when Avery wasn't around.  

When she first came back and fully encountered the news about my dad's stroke, my mom's Alzheimer's, my brother's auto accident, her dog pissing and shitting in the hose, and the lingering skunk odor, she naturally became distraught.  It was all so overwhelmingly awful.  Involved with every aspect of the situation and being of tremendous assistance to me helping to file mom and dad's taxes and many other urgent financial matters, Jennifer was blunt.  “Somebody's got to die,” she told Avery.  And that's true.  But, so far, no one is dead.

Jennifer's dog is not only having kidney issues but old dog hip issues too.  For a time, he suddenly couldn't go up stairs without falling.  His back legs just gave out.  We were picking him up and carrying up the steps.  She tried an old prescription for doggie arthritis.  That seems to be working.  Our vet has prescribed more of it.  As Kurt Vonnegut used to write: “So it goes.”

My main responsibilities are my mother.  I am with her from about 8:30 am until about 7 pm Monday through Friday.  I buy her groceries, handle her prescriptions and intercept her mail when I can (if she gets it then I have to play investigator to track down where she put it).  I have changed all the major bills to be either sent electronically or to our home address.  That took awhile.
 
The first thing mom and I usually do when I arrive is go for a walk around a nearby street.  It is a circular path with a fairly steep hill at the end.  At 85, mom can still kick that hill's butt every morning.  Then she sits in her chair, drinks water and reads her devotional for the third or forth time that morning.  It is the same devotional, she can't remember reading it before.  And it is not even the correct one for the day.  It is from an old devotional book dated years ago.  It doesn't matter.  It is all new and meaningful to her.  She has no idea about time of year.  What is time to a holy fool?

More recently, the walk has turned into troublesome habit.  With the summer light and heat, mom knows that she needs to get out early and get her walk in before it gets hot.  Sometimes she will do the circular walk alone, which is not necessarily a good thing.  It is a familiar path for her but I worry about her possibly falling or becoming disoriented.  I have been stressing the need for her to wait for me to arrive before she walks.  My brother attempts to keep her in the house until he has to leave to get ready for work.  But sometimes my mom takes off on her own out of habit, before I can arrive in the few minutes after he has gone.  

Right now, I am trying to instill a new habit of walking at 9am.  It is very difficult for me to get over to her house before 8:30.  Yesterday I met her coming up the big hill as I was driving to her house.  When she got home I was extremely stern with her, much more so than I have ever been before.  I wanted to frighten her and I succeeded.  Hopefully, this will leave a marker in her feeble memory to wait until I arrive.  I told her I love her and I want to walk with her.  Why would she want to walk alone?  She understood it in that moment and promised to wait for me in the future.  We will have to wait and see if that actually happens.  Hopefully, she will remember.  At any rate, things should become easier when we get to fall and the amount of daylight and weather changes. 

Like myself, she is a creature of habit, which helps me manage things.  I know, for example, that she can prepare her own lunch (usually a sandwich, chips, and a couple of lemon cookies).  That allows me to go home for my lunch, play with Kudo, and take care of a few things around the house.  If Avery is covering the afternoon then I can mow or take on another large project.

The real challenge with my mom begins about 3:30 and lasts until she goes to bed at 7 or 7:30 pm.  (Thankfully she sleeps soundly for about 12 hours.)  She sundowns, which is common among those with Alzheimer's.  She will randomly get food out of the fridge and set it out for dinner even though dinner is hours away.  She turns the ceiling fan on and off.  She raises and lowers the window shades.  She opens and closes the front door.  She turns the thermostat up and down, off or on.  She goes outside to sit in her rocker in the carport for about two minutes, then she is back inside for five minutes, then back out again.  And so on.  Whatever she does, it doesn't last more than a few minutes and then she is on to something else.
 
I have learned it is best to devote that time to her and engage her in conversation.  That settles her down but you have to be willing to put up with insistently repeated questions, always joyfully asked literally every 3 or 4 minutes.  “How was your day?”  “What did you do today to make it a good day?”  “What kind of day did you have?”  “How do you kill a day?”  It is as if I haven't been with her all day long.  She can't remember that.  

She focuses on the road for some reason.  When her house was built in the late 1950's our road was unpaved.  “I want you to tell me when they paved that road,” she will ask.  Over and over with variations like “I want to ask you another question...”  I try to answer her the same way every time as if it were the first time (and not the tenth) that she asked the question.

Then I usually get a rambling lecture of of how she moved to Alabama as a child and how she had to pick cotton.  “Then someone invented a machine to pick the cotton.  I was so happy.  Now machines have pretty much taken over the world.”  Then we go back to how my day was, when the road was paved, how she misses my dad, and, ultimately, back to picking cotton.  It is relentless.

In the morning before, during and after our walk, there are other habitual phrases uttered.  “What's on your plate today?”  “You got a busy day ahead?”  Referring to the weather:  “How high is it supposed to get today?”  She loves all sunny days.  Detests cloudy days.  She is more or less animated depending upon cloud cover and possible rain.  “Listen to them,” referring to the birds that surround the neighborhood.  “I don't know when I fell in love with nature,”  she frequently proclaims, always cheerfully.

She loves to sing and usually has one song “stuck on the brain” every day.  It is usually a song about sunshine like “Oh, what a beautiful morning.”  “Uncloudy Day.”  “Zip-a-Dee-Do-Da.”  “Oh, Let the Sun Shine In.”  But there are some others that randomly settle-in, like the gospel song “I Don't Know Who Holds Tomorrow” or songs from Hank Williams "Hey, Good Lucking") or Kenny Rogers ("Lucille).

For Memorial Day we brought dad home in his wheelchair to enjoy a cookout with the family.  Mom did not respond well.  The following day she had the blahs and did not feel like going for a walk.  The next day she had a full-blown migraine I had to nurse her through.  After that she was more disoriented than usual, doing crazy things like pouring her cereal bowl out in the front yard and using the wrong bathroom.  Gradually, these behaviors changed and she went back to “normal.”

Recently, my sister took her to church for Sunday services.  She spent the entire next week thinking each day was “the Sabbath” and dressing for church every morning.  Of course, I had to convince her that the day was not Sunday and that she would have to change clothes before we could go for a walk.  At first she would argue with me and flatly state she was walking in her dress.  But, gradually, she snapped out of it.

Sometimes I have to get creative – and sneaky.  A couple of weeks after I started staying with her, I noticed she wasn't brushing her teeth at all.  Personal hygiene is one of the first things to go along with the memory in the behavior of those with Alzheimer's.  So, I started going into her bathroom first thing every morning, checking her toothbrush (it was dry) and leaving it on the counter with some toothpaste on it.  I would come back into the living room laughing and saying she must have gotten into a hurry because she left her toothbrush unused.
 
“Yes.  The phone started ringing and I got distracted,”  she says joyfully.  The phone has been disconnected for months.  But, she brushes her teeth every time.
 
She used to think my dad was dead.  Every day the first thing she would ask me was “Is he dead?”  “When did he die?”  I would always respond exactly the same way.  It is not an exaggeration to say that I repeated my response the same way hundreds of times over a 3 or 4 week period.  “Dad is in rehab, they are helping him get better.”  At some point a marker was formed in her half-crazed brain.
 
Now she simply says, “I know he's in rehab.”  Recently, that has evolved into “Someone called me, I wish I had gotten a name.  They told me he's been transferred into town.”  My mom's brain fascinates me, what sticks, what doesn't, how some things have a powerful effect on her, others are not remembered at all.  Most of her life is unremembered these days.

Lately, she has taken to memories of confusion and complete fabrication.  She tells of “Papa” deciding to move from south Alabama to south Georgia where the farming (or the soil or the rain, it depends on the telling) was supposedly better.  Sometimes Papa is her father and she talks about moving with her mother and two sisters.  Other times Papa is my dad who never left this farm where he was born and she thinks I lived with them in south Georgia, which never happened.  

She often intermingles these “memories” in some strange version where both her dad and her sisters and my dad and me are all part of the same story.  It makes no sense at all, of course.  “Didn't you go to college in south Alabama?”  I laugh and tell her that I went to UGA in Athens and it is a sacrilege for her to accuse me of going to college in Alabama.  She laughs, getting the football-oriented humor of my remark.  Sometimes she recalls these memories “vividly,” sometimes they are a “vague” recollection.  Much of it is made up in her head.

Each evening, in that last half hour before she finally goes to bed, she reflects on the day.  “I think we can all agree this has been a glorious day.”  That's if it has been a sunny day.  I respond that, indeed, “the day is a credit in the Ledger of Days.”  She thinks it is humorous, the idea of having credit and debit days.  Humor is often my aid and my solace in dealing with this situation.  Fortunately, mom's sense of humor is still intact, which helps immensely.

Mom has turned into a holy fool.  I have never met anyone in my long life with more gratitude than my mother has right now.  She is grateful for sunshine, for rain (which she calls “moisture”) for bird song, for the road being paved, for people helping out, for her vision and hearing and for the fact she can still do her walk.  She is thankful for people visiting her, for those who prepare meals, for what peace and decency exists in the world.  She is literally grateful for everything.

This is strangely inspiring to me.  I think of Myshkin in The Idiot.  My mother is now that kind of person.  A beautiful soul without a care in the world and smiling at everyone she sees.  It opens up my tainted vision a bit and I notice that, yes indeed, there is a lot to be grateful for in this life.

When my mom's dementia became full-blown Alzheimer's and we had to take away her car keys, my dad was suddenly thrust into doing everything.  He had to write the checks and pay the bills, something mom used to handle with ease.  He had to watch her and keep her from doing ridiculous things.  He did not like it.  At first, he was angry and sometimes expressed his anger by yelling at my mom.  It didn't really phase her much.  She already did not care anymore, though she offered boundless love to him, her family and everything in her known world.

“This is my life now.”  That is what my dad said to me one day, a couple of months in to her slowly deteriorating condition.  After the anger and frustration, my dad accepted his situation and lived with it and through it for several years until his stroke in March passed the responsibilities on to his children.  My sister and brother and I have a pretty good team approach to everything at the moment.  It isn't easy on any of us, each of us is adjusting in our way given our own life circumstances.  

For me, I am trying to approach my situation with curiosity.  My mom's condition, her bizarre behavior, her distant memories, the lack of new ones, and incessant repetitions fascinate me.  But I could not manage this without the support of Jennifer, Avery, and the rest of the family especially my sister and brother.  Once again, my dad's wise words simultaneously ground me and inspire me.  “This is my life now.”  That sums it up as well as anything.