Warning, this is a long one

“Isolation, loneliness, seclusion, quarantine, separation, segregation, inclusion (antonym), remoteness, inaccessibility.”  Or, being box up. All these words are just the a few that express these last few months of isolation.

I am not the only one, and I am sure plenty of you understand.  There have been lots of videos on YouTube and feature on the news of how people are coping.  Most are funny and we laugh at the reality behind them too.  We all are in this “experiment” together.  It is creating great data on how these last few months have taught me quite a bit about myself and my expectations of myself.  But nowhere, no where is the elephant in the room talked about. 

My mom, when she was alive, was known in our family for her phone calls.  She would call us two to three times a day.  It got to a point that I would let her calls just go to voice mail to see if it were so vital to answer.  There was just so much you can say in one day…at least that was how I felt then.  My siblings were in the same boat as I.  When there was an event, like meeting up with the family for dinner, outing or holiday, the phone calls would escalate.  What time?  What should I wear?  Who is going to pick me up?  Tons, and tons of questions that would be tons of extra calls.  And if there was a weather storm coming…oh my word look out!  Did you close your window?   Did you cover the flowers?  Why would you be going out?  Then you add my aunt and her phone calls, well they could have their own phone company with all those calls.  We all had them, including my cousins.  The greeting “What are you doing?”  even when she just called that morning, it echoes through my memories.  At her funeral, we found out that we were not the only ones.  She called her church people, her friends everyone!  It is amazing the phone was not attached to her ear permanently. 

We can tell these stories now as part of our family folklore, and we laugh as someone will share another unknown story about it.  But what I did not fully understand then that I do now is the isolation she and my aunt were in.

This new norm is not.  This is not normal for any of us.  It is not part of who we are.  Yes, some people do enjoy and thrive on some isolation.  But it is not what we as humans are.  We need each other.  If only to pull out our fears of an upcoming storm.  It is also a check and balance on how we communicate to each other.  Things we would never say eye to eye or voice to voice we have found an unhealthy medium to express ourselves…. isolation.

For me, it started with working from home.  Now, who would not love the idea not having someone over your head checking on you.  You do not have to dress up, you do not even have to comb your hair (unless you are on a Zoom call).  But after you take a week to set up your new “office” and set your goals you start shifting.  I struggled with finding a routine.  Routine for me is how I function at work.  My routine first thing when I walked into my office was dealing with one disaster after another until 2:00 pm when I could breathe and start doing desk work.  This was the first shift.  There were no disasters.  Good news, then I could work on my desk job.  But that shifted too!  I had to really search for work.  I realize my day to day job was tied to my work environment at another location.  As I started to realize that I adapted and created new goals, that needed deep thinking and the quietness I had at my new home office.  I started working longer hours, no breaks (except the bathroom and something to drink).  I was thriving on this new routine, but it was inclusive.  So, I started to call.

You know when you are catching someone who really do not have time to talk to you.  You hear it in their voice.  You know to move back and excuse yourself and go for the next call.  On my to do list I started to keep track of those calls and one day was astonished on the length of some of my calls.  I am a communicator, and sometimes when I am nervous, I talk and talk.  If in my pauses the other side is not talking, it motivates me to talk more.  Sad, I know.  But that is who I am, and I try to work on it.  I finally found a workable goal focus routine that I did not feel lost in.  I took energy from working with staff to find opportunities for our quarantine families to be engaged in activities.  We developed a weekly activity packet, DVD that was a mirror to our program day, CD of sing-along songs, and now working on a Zoom program.

Then, my program was shut down and closed for good. 

My heart went out for all our caregivers and participants who not only isolated physically, but now…lost to the emptiness of this new norm.

In my despair which was a mourning process of not only what would happen to those individuals and staff, I also was dealing with unemployment.  The month of working from home, I was able to go into work at least once a week.  It was on those trips that I would face the world mask in place and a purse full of cleaner to buy my groceries at “safe” places.  I would learn from others how to work the drop off, pick up of essential items and food pick up from my favorite restaurants.  I was adventurist but cautious.  I always had a habit of cleaning my hands after shopping and careful about germs.  After all, the flu and colds have been around a lot longer and those can be killers to our clients.  But now, it was changing.  A different norm was appearing.

My days grew longer at first.  I struggled once again to find a routine.  I can only make so many breads, casseroles with so limited of resources.  Yes, I even tried sourdough starter when the stores and internet went dry on yeast.  I had a new budget, but still enjoy a little freedom.  I found a great farm meat source and a great bakery to buy flour.  I was surviving in the outside, but back home…. I was sinking. 

My calls now were to family and friends.  And soon they would last, for hours!  Across the country I started to check in.  Started to converse and filling my days with human contact.  But it was not enough, yet I was using up all my phone contact list and still had time to spare.  So, I watch like everyone else did tons of TV shows, movies and they all started to blend in.  That was the first week.

Being unemployed I am lucky to live in a state that is known all over the nation for their innovative unemployment model.  They have classes, job support groups, goals, accountability.  They give you money to further your education or gaps in your skills.  They help you find yourself and walk with you through this journey you are on.  And they understand how hard and demeaning it is.  That was before COVID19.  That was during the last recession.  What was done in joint sessions with others that you could sit with and talk with were now Zoom meetings.  They were informative and in the first two months my calendar was filled with classes.  Fantastic classes.  The job support groups did Zoom meetings with lectures and cheerleading encouragement.  But no human contact.  As our state closed so did opportunities of that human contact. Yet, I signed up for everything and did everything.  My calendar was pack full of classes, lectures etc.  In job support group you have a score card.  200 points a week is a goal and means you are doing good.  My average was 1800 a week!   Even taken advantage of college classes the government has offered.  I was so fearful of not finding a job. Therefore, I did everything! 

Then one Sunday evening after I turn off the lights to go to bed, I started to cry, not a little but a down right hurricane cry.  To most of my friends and family I am optimistic, glass full type of person.  I have a strong faith and genuinely believe I am not alone.  I draw on that.  In bad times before, I was the encourager or was told how strong I was.  But, like all of us, we can be deceivers.  Part of being unemployed is the roller coaster of emotions.  It is not laterial….it is up and down and at times off the graft.  I was amazed by my reactions.  I fought hard not to allow it to surface.  Yet it had to emerge.  That cry was the real me.

I was scared, alone, isolated in a way I have never known before.  When I would hear people talk about their isolation they would end with “at least I have my husband, or children etc.”   I have only me.  I started to resent people who talked about family zoom meetings, game nights etc.  I was happy for them, but it accentuated my loneliness.  I could go days without any form of contact with the outside world.  Because of the dismal COVID and riots, I stop watching the news.  Because one movie was melting into another, I gave up on them.  Pretty soon, there was no reason to change clothes or brush my hair.   If I slept, I was waking up hour after hour tossing and turning (totally not me – I am normally a deep sleeper in one or two positions for the full night).  I started to sleep longer.  And then, not eating.  If I did eat it was something so simple like chips or cookies.  I had no energy.  I had nothing.

Except for holidays and a birthday or two, a few phone calls that was it.  They say you need to be open to others, when they ask how you are doing, let them know it is a bad day.  I had lean not to.  They do not want to really know.  I tried; it did not work.  As for human touch, no one was able to give me a pat on the shoulder, let alone a long-drawn hug (and I am a true Northern Scandinavian don’t touch me person, but boy I need one). I was missing something here.  And then that Sunday night it hit me.

Monday morning was coming, and I had no purpose.  I had finished all the possible classes with the unemployment workforce, I had finished all the lectures with the job support group.  I had even signed up for repeated classes, I had forgotten I already took.  I upgraded my strength finders and personality traits and all they showed was what I need most is to be accomplishing and when I do not, I am lost.  Here I was the evening before and there was just emptiness before me.  No new classes, no new learning just a pit of darkness.  I could not go on.  I was lost.  I was not suicidal; I was lost in a pit I could not get out of. 

That cry brought me to my God.  All these emotions of striving to survive.  All the physical implications.  All the fears that was presented.  Real or not…they were all taking their toll on me.  I do not remember how long I cried, but like I said before, it was a good one.  What I learn is, I am not perfect.  Yes, it is nice to have acclaims of being strong, etc.  But by trying to be perfect I was placing myself before God.  Only God is perfect, and I am not God.  So why in the world was I trying to be?  That was a spiritual trip for me.  We are taught that because of our faith we should be above our feelings.  Trust, trust, trust.  You are not believing if you do not.  That is not true.  God has time and time again taught us that we are all too human and make mistakes.  As for showing those mistakes, just read Psalms and David’s cries! 

The second thing is having faith in the unknown…that is a leap.  And this is a time of the unknowns!  Not just unemployment, but COVID, isolation, the riots, and the elections.  Normally you would have the opportunity to talk over lunch, dinner with friends, family and discuss this.  But you cannot.  So that night I had some important awakening to accept.  The unknown and where is my faith.  You can be a naysayer and say faith does not matter, but it does.  Without faith you have no hope.  Without hope, well it would be a pit that you would never get out of.

The next morning, I went to another job support group online that I had checked out a few times before but never really gave it a chance.  That day they had a speaker David Cornell.  Unbelievable!  He spoke on his book “Cultivate Courage…Face Fear, fulfill Dreams.”  What an inspirational talk and truth from his own life.  At the end he shared two books that was worth the reading.  They were “if” and “Chase the Lion” by Mark Batterson.  I was so impressed with his presentation that I jump on to amazon and checked out the books.  Actually, there was a first book called: “In a Pit with a Lion On A Snowy day.”  The title alone forced me to buy it.  Two books that would transform my despair.  Those books lead me to a few more and a few more lead me to podcast and webinars.  Pretty soon I was seeing, I was feeling again.  I was learning. 

You see, when I cried out, I was letting go.  I was asking for help.  The book In a Pit with a Lion on a Snowy day” is from a verse in the Bible describing one of David’s 37 warriors.  Just a quick reference to a deed this guy did.  But do you know of anyone who did something like that?  He equated that with how the courage this warrior had to have to jump in there in the first place.  And the book is fantastic describing that and other deeds when they can let go of their fears.  I like to also look at the “pit” is at times we “fall into the pit” and our fears about getting out.  And that is where I was at.

I started to think of where I went wrong.  Of course, not being perfect was a start.  I also realize my fear of the unknown was keeping me from what I could, should be doing.  How would people perceive me an unemployed pathetic aging director.  Who would listen to me?  But as in Cultivate Courage I realize I needed to frame my fear.  And was verified in Mark Batterson’s books to get back into the pit and fight it.  That lead me to write a few emails.  Not that I expected to hear back, but felt I needed to say something.  Two of the emails came back with thank you for your thoughts.  One never was answered.  BUT, a month letter one email came to me.  Dr. Joseph E. Gaugler of the University of Minnesota.  He had written an article for the Minneapolis Star Tribune on Our vast family care system for the elderly is at risk of collapse.”   He wrote in his email with a link to his article  that a comment I made inspired him.  I had written:  “..I am not sure how many champions are out there, but ever if there was a time, it is now…this isolation has been a disaster for older people.” 

You see, I like to say that this time was like walking with God in the garden.  At first it was my crying and telling Him all the bad things that I cannot handle and so sad for me.  Then it transformed into God talking to me.  Understanding me, encouraging me, and giving me supports.  And now, He is reminding me that the skills, tools that is me is to be that advocate for them. My mission – ministry for the caregivers and their love one. 

We all will have the stories to tell our future generations where we were and what we did during this time in our lives.  But what we all fail to understand, that this is just a preview. I think back to my mom and her phone calls.  I see now, I feel now, I understand now…her isolation.  So many of us fail to see it at first.  It is a frustration, annoyance, something that is just “mom.”   But weather it is the caregiver or the love one who has the disease – they are isolated.  They are alone.  They are fearful.  They have lost their purpose. They are in a pit.

That day, when you are given the diagnosis, that day you enter the world of a caregiver you start becoming isolated.  You start out busy getting set up for this new norm.  Then as time moves on, you start see newer norms.  Newer events that chip away from who you are now and were.  Friends who once talked for hours or socialized soon dwindle away.  Not knowing what to say, or the fact you talk a lot.  You start seeing life only in your four walls because that is where you are confined.  And then one day pass into another and there is no purpose.  You lose hope.  You are in the pit. 

If we could just channel all the zoom meetings, the playfulness of being quarantine, the “we are in this all together” slogans for our caregivers and love one…. what a difference it would make.  If we could see not only for ourselves but for them and accept the need for socialization, engagement…what a difference it would make.  If we could have all the creative hours that the media industry has had to make to capture our attention and do it for the caregivers and love ones…. What a difference that would make. 

We are starting to emerge out of this epidemic experience.  I use of the word emerge because with knowledge and experience we grow.  Therefore, we are growing slowly but we are.  We know there is no quick answer, there is no end date, there is no fast cure, there is lots of mis information, and those you thought you knew – you do not.  But there are opportunities.  We now can look through new lenses and we can help make a difference for those who have and will experience this isolation again and again long after our epidemic is over.  The questions before us:  “..how many champions are out there, but ever if there was a time, it is now…this isolation has been a disaster for older people.”  Are you a champion?  Are you a warrior willing to jump in a pit with a lion on a snowy day? 

 

What is a moment in time?  We tend to think in minutes, hours, days, months, years.  But a moment… a flash of time.  It depends if you are on the receiving or giving end.  “Just give me a moment,” as a giver is intended to delay a conversation.  As a receiver that moment can seem like an eternity.  When you have all the time in the world, moments are too small to measure.  When you are losing time or waiting, moments vanish too fast.

It is common for a caregiver to want to hold on.  To keep their loved one’s memory intact. Then they are not slipping away.  But without realizing it, that memory is slipping away.  And it is hard to let go.  Keeping the mind intact becomes a routine of quizzes of who is who.  “Don’t you remember her…say her name again.”  As the progressing of the disease take over, measuring the memory becomes measuring emotions.   He had a good day today, he was happy.  She was upset, so we left the party not doing well.   As good days become smaller and bad days increase, the caregiver becomes depress and overwhelmed.  Determination to change it or control it takes over, fighting by increasing past likes.  To recreate or find new “good” times.  To measure success by the smile on their face to prove the caregiver made the right decision.  It becomes a game, that challenges the caregiver beyond reality.

One such caregiver excitedly told be that she got tickets to the theater for a production of her husband’s favorite play.  She was so looking forward to taking him there because he would be so happy!  The tickets were costly but that was no concern to her.  Arranging transportation, dinner and everything was an ordeal, but she was excited because it was for him.  The day came and went.  The next time I saw her she did not mention the play at all.  Matter of fact she avoided all conversations for a week.  Finally, she came into my office regarding another matter and soon tears started to fall down her cheeks.  Handing her a tissue, I touched her hand and ask if she wanted to talk.  Her eyes welded up with tears and her mouth quivering, she said yes.  She then told me about that evening.

She arranged everything just for him.  She made sure he had a nap that afternoon to be sure he was not too tired.  She chose comfortable clothes but worthy of his need to look appropriate.  The transportation came on time and drop them off at the right door.  Everything was going right.  Finally, they sat in their seats and the play began.  After about 15 minutes he started to get antsy.  It started to increase, and he would turn around looking for someone he knew, or thought he knew.  At first people around them were nice and understanding but soon it became distracting.  She said she took in a deep breath and at intermission she escorted him out.  The lobby being crowded, and the noise increased his anxiety and soon she realizes he was not going to make it.  So, she called for the transporter who could not come any earlier.  Her nerves being rattled and trying to think what to do was met by a very nice usher who offer to call her a taxi.   She was defeated.  Her husband started to calm down once in the taxi but was still looking around trying to find people he knew.  She asked him if he liked the play.  He did not answer.  She tried to nudge any recognition of the play, no answer.  Once home, she got him settled and ready for bed.  As she laid him down, she told him she loved him, and he reach for her hand and fell asleep.   She went into the living room collapses into tears.

She talked about how important this became to her because she wanted to give him something he liked doing.  They often talked about how much they miss the theater, and this would have been so special.  A gift she could give him.  But instead, it was a disaster.  She was losing him.  She talked about years before when the doctor told them his diagnosis, she and her husband talked about what was most important to him.  Life was full for him.  He was always doing things, keeping busy, enjoying life.  They went on trips and did things that they always talked about but had no time.  They did well to fulfill those goals in those few years.  Going through pictures and things that were important to him.  Seeing places, he always wanted to see.  Keeping family near and enjoying events together.  They adapted with his disease as it progressed and did well.  But now, it was becoming too much.

In the beginning he would tell her how great those journeys were.  How wonderful to be with family was.  He thanked her.  She knew his approval and that was so important to her.  She was honoring him.  As time went on instead of saying how great it was, his approval became a nod, a smile, a twinkle in his eyes.  She was still honoring him, and he was grateful.  She knew she was doing right.  And as long as he showed his approval, she was making the right decisions.  But now, it was gone.

The next morning, she tried again to “measure.”  She asked him if he had a good time the night before.  She talked about a certain scene or costume.  He just ate his breakfast without any response. She was losing him.  How could this happen, he was still healthy.  He is still with her.  When she slept at night, he was still next to her.   For over 50 years, he is still there.  Reality was too much.

I sat there listening to her story.  As she sobbed I could here this story but in different voices through the years.  Caregivers looking for approval and not knowing.  “If she is happy at the end of the day…I made the right decision.”    “When he wants to go, I know it is the right thing to do.”    They are centering approval on a cognitive rational that is no longer there for some.    I explained to her that sometimes we are measuring success in our terms not in theirs.  Our terms are center around logical steps that is a means to the end.  For them, it is the moment.

A moment is just that.  What is hard for us to understand is that it is fleeting.  Before we know it, it is gone.  And that is the reality of the disease to us.  Once they get to that point, they can no longer argue the value of a moment, a minute, an hour etc., because they no longer understand the concept of time.   To tell them that so and so will be here in 15 minutes or at 3:00 means nothing.  It is a cognitive function that no long computes in the brain.  Even if they agree, more than likely a few minutes later they will come back and ask the same question again.  It is just words to them.  Not constructive knowledge.  And that is the killer for caregivers.  They can get lost in the emotions, cycle of arguing, trying to explain to no avail.

I asked her when he reached for her hand, and as they held hands, did he look content.  She sat there and thought about it.  “Yes, now that you say that.  He used to always grab my hand, ever since we dated.  Holding my hand was very comfortable to him.  He would tell me that through the years.  In bed just as we were falling asleep, he would reach for my hand.   She went on to tell me that his hold family always did that.  She then talked about him holding his father’s hand as they were walking together down the hall in the nursing home.   And then later as his father laid dying”.

She looked up on that verge of an ahh moment she asked, “but we always do that.”  I smiled and affirmed to her that it his sign of approval.  He has lost the words, the cognitive reasoning.  But he is still able to show her his approval…. not of the theater, the dinner or anything else of that night.  But at that “moment” he could still hold her hand.   She gasps!  “My word, he still passes by me grabbing my hand, I just thought it was mindless motion.”  It may be, but it is comforting and that is him reaching out.

We need to look for those moments and embrace them.  When those days of anger, arguments, frustrations overtake our love one or even ourselves – that is just a reaction to coping with this confusing scary world.   Instead, the moments; whether in laughter, joy, hug, smile or just holding a hand – those are the moments to cherish.  It is like a photograph.  That is a snapshot of a moment in time.

She smiled and wiped the tears away.  A few weeks later she walked by smiling.  “Moments, I get it now.  I started a diary of “moments.” I read them now at the end of the day and realize our days are full of moments!  Little things like the clouds in the sky to laughing together to the smell of baked bread from the oven.  These moments are shared with my children now.  What was hard for them to see us going through has now shown there are good times still.  And now when he reaches for my hand at night, I smile… he is still with me!”

 

 

Today as I write, I am not so much giving insights to caregiving as memories.  I can’t help it.  Whenever I see tomatoes I think of my mom.  

There are always those little things that pop up that for good or bad turns up a memory.  My mom always had a habit or using the ‘reminder’ button.  “Don’t forget to turn off the lights.”  “Don’t forget to close the windows before the rain.”  She also  gave the ‘warning’ signal before it was invented.  It didn’t matter where in the country bad weather was or where you were – she would call and give you a warning.  I didn’t have to turn on the radio or the TV…I had ‘mom weather’. 

Once, I had just started working for a small newspaper when on one of those awful weather days the tornado sirens went off.  Electricity went out.  We were on generators and only one phone line was working.  The phone rang and all the reporters and department heads hoover around it as it was picked up.  This was a newsworthy moment.  The staff person answered and said “One moment…”  As all the necks reach out to hear the staff person yell  “Is there….and then my name.”  Everyone looked around repeating my name in wonderment as to who this person may be…must be important…the only phone call that came in and…then the next words came out of the staff person….”it’s your mom.”   I died.  Yep. That was my mom.

It also happened in California when I was in college.  I was called out of class for an important phone call.  It was my mom.  She wanted to know if I was ok from the earthquake.  Earthquake?   I found out later there was one in a far part of Eastern Europe, being in California…my mom just wanted to be sure I was ok.  Yep, that was my mom.  As much as it could irritate me…it was one of the things I missed after she died.  To this date my brother and I will call each other on an approaching storm…”secure the battle hatches…it’s a big one comin” and then laugh. 

That is what happened with the tomato plant.  I had just moved into a new house with a small garden.  My mom grew up with gardens that her mother and her siblings tended.  Those gardens took them through the depression years.  My grandfather had died and my grandmother had four children to raise.  The only source of income was working as a cook for a wealthy family in Boston.  She did not make much and had to travel quite the distance on city buses.  But she was able to provide for the family and stretch the household budget with the garden.  Not only were there vegetables but fruit trees and a flower garden.  It was always a good memory for my mom.  So for a house warming gift my mom gave me a tomato plant. 

Now that tomato plant….I will admit that I did not go running out to plant it that day.  It may have taken a few days.  I was busy with work and unpacking.  But as it sat in its container waiting to be planted I did water it…after all it was just outside my back door.  Each day my mom would call…”have you planted it yet? “   At first they were pleasant questions…and as the days progressed they became more comments about what would happen if it was not planted.  To my reaction I would argue that it was planted in a pot and it will be just fine until I can get it into the garden and after all – go to any garden nursery and there will be plenty of tomato plants not in the ground!  Of course that was not the right answer…but she was now nagging me and I was reacting.   I finally planted it, thinking that now no more tomato calls.  Silly me.

Each day…did you water the tomato plant.. calls?  Each day when the phone rang I dreaded the question. But if I did not answer the phone…the questions/comments would be on the answering machine.   Finally late one night I lost it.   In my pj’s getting ready for an early night sleep since I had an early morning work meeting.   I was standing in the kitchen answering the phone. It was my mom.  I was worry because of the lateness of the call something must be wrong.  No, it was her daily tomato question:  “Mom!  I am an adult!  I have had gardens.  I have had plants.  I have had flowers.  I KNOW how and WHEN to water plants.  AS for this TOMATO PLANT…YES!  IT IS WATER AND DO NOT CALL ME AGAIN ASKING ABOUT IF THE STUPID PLANT WAS WATERED!!!!  With that she said she was sorry to be a mom and after all I should be thankful…and so on and so forth…the creed of all mothers that they will throw at you.  We hung up.  It was past 10:30 pm and dark outside.  I stood there staring down at my slippers.  SHOOT!  In other words…I had lied.  I did not water it. I then marched outside and turn on the hose and watered that stupid tomato plant!!! 

That plant did not thrive.  It was a very, very sad looking plant.  My aunt had come over for a July 4^th picnic and was the first time she really got to see the new place.  I gave her a tour and when we came to the garden…she looked down at the pitiful tomato plant, looked up at me she burst out laughing!  Yep, she knew…just like her sister…I did not water it as much as I should have.  But unlike her sister (at least this time) she never said a word about it to my mom or me again. 

The years have gone by, but as I said when I began this story…whenever I see a tomato I think of my mom.  I still grow tomato plants.  Most of the time the plants thrive and I yield a good bounty for wonderful salad toppers, BLT sandwiches or addition to the pesto that I add on pasta.  Unlike my mom, I do not put my plants in the ground.  I plant them in containers.  I have had more success that way.  I am assured of the dirt.  Whenever too much or not enough sun…I can move them around.  That includes the rain too!  Some years are better than others.  Last year, my first time on my new deck I grew…a stick.  Got up to a yard high…finally bloomed one flower then a big storm blew in and…well it was a nice stick.  AND a well-watered stick!

It is important to remember those moments with our love ones.  At first it may not be a pleasant moment.  But later, through this incredible or amazing event you will find your own laughter, smile or just a sense of relief.  Our love ones are just that.  Love.  But in the mist of caregiving it does not seem like that.  Yet, when you go to any support group…you will hear the laughter.  The sharing of incredible or amazing stories that you wonder how could they take it.  Then you realize…they can’t…but sharing gives voice.  And voice gives hope.  And hope reminds you that there is love.

This year, my plant has a number of blooms that have already become little green tomatoes.  When I looked out my window this morning I noticed one had bloomed.  I smiled.  As I finish this memory, the clouds are getting darker and ready to burst.   Thankfully I have secured the battle hatches but surprised that I have not received a call from my brother yet….maybe I need to call him?  And then we can laugh!

 

 

I read somewhere that caregiving can be a joy.  They made it sound like it was a dance through a meadow, full of flowers.  All that warm comfort loving feeling.  It stung.  I felt like a failure.  It was no bed of roses for me.  Matter of fact, it was a minefield full of explosions.

Caregiving is hard and it really does a number on your emotions.  I felt like that a number of times with my mother.  My aunt?  She was easy.  She made it clear to me that she wanted me to help her if she needed care.  She arranged for me to be listed on her medical documents.  She showed me all her important papers.  We had the “talk” …. the one about her wishes in case she could not speak for herself.  When that time came, she accepted and thank me for taking care of her. Although before she needed help she was a handful.  She was very opinionated and into my affairs as well as my brothers and relatives.  She just was cranky to a child – and even adults.  She was the relative you fear would come for a visit…and when she did…look out!

My mother on the other hand…was the one you wanted to visit.  Fun, easy-going, full of laughter.  But for me…she was very hard to deal with.  We just did not think alike.  Maybe it is the mother daughter thing.   Whatever, we just were always on the opposite sides.  She wanted me to live with her (she actually was living with me), as if I was her maid, driver, chief, etc.  She took over my whole world and at times I felt suffocated.  It is harsh, I know.  I remember having dreams that I would get so frustrated and wake up with my fist clinching and my jaw hurting.  On an emotional level we were not good.  But I was the organizer and the expert who knew the terrain and could figure out paper work and understand legal jargon.  So up until her last two years in that respect she would listen.  Here I was working in the field of caregivers and I was the worst…. or so I thought.

In working with caregivers; there are always those who no matter how you explain things they will not accept help.  They seem to always be waiting for that “rainy day.”  Eventually, as I inform them that it is raining – it’s a mega storm then will they listen and I can win them over.  But there are the few stragglers who will always for one reason or other refuse help.  After a while I will run into them or their families to hear how they became so exhausted and everything was falling apart.  Even then…they can do it on their own.  Maybe it is because they can’t see what is in front of them.  Or maybe that pledge of “death do us part” or maybe just stubbornness.  I have seen their determination ending up causing problems rather than helping.  Falls, medication blunders, dehydration are just a few.  Becoming the opposite of what they claim there were.

My mom was living on her own in a cute little senior “cottage” that she loved.  All went well for a few years until she had a small stroke that left her weak on one side.  She struggled in the hospital with physical therapy.  Even told me that they beat her up for which after many questions she changed it to yelling.  Believing my mom, I went to the nurse to complain on her behalf.  The nurse said she had witness some of the times when my mom would be the one yelling and refusing treatments.  After some discussion we all agreed that she needed to be in transitional care.  We chose a place that I knew the administrator very well. 

The goal in transitional care is to transition from the hospital to home.  There are a number of objectives they develop from the condition that needs to change in order for someone to live back home.  One was physical therapy.  My mother hated it at the hospital and now hated it here.  She would try to get out of it.  Came up with amazing excuses.  She had guest coming.  She was sick.  She had an important phone call.   I would try to explain to my mother that this is not a choice.  That for Medicare to pay she has to meet these goals…therefore she has to go to physical therapy.  If not, she would have to pay the bill and she would not be able to return home.  I tried every angle. These conversations would go on and on and I would walk out of the “visit” exhausted.  She just did not want to do it and that was it!!  She was determined and would use whatever powers she had to break me down.  It was a total show down.  At one point I walked out and sat outside just sobbing.  I just could not convince her what she needed to do. 

I got a call at work that my mother wanted out.  And in order to do that they would have to do a home assessment to see if it would be safe.  I rolled my eyes.  I knew what would happen and how would we work this out.  I was facing the future, my one-bedroom apartment that I loved would have to go.  My friends would stop coming over.  No time to myself.  My life was going down the toilet!  But more importantly was this attitude from my mother.  She had no regard to safety.  She had no regard to that someone knew something more than she did. So we set up an appointment and I went to my boss to ask for the time off. 

The day of the appointment I had to go to the transition care unit and pick her up to meet the physical therapist at my mother’s home.  Just walking down the hall and getting her into the car was hard.  She was weak and refused to use a walker or cane.  She would not listen to directions to get into the car and it was ….so painful to see.  So of course on the way over I took the time in a very calm and loving attitude explain that we are running out of options.  What did she want.  She would not answer.  She sat in silence all the way.

As we drove up to her home, the therapist came to the car door.  Expecting that my mother could not get out of the car by the way she got in it, I quickly came around to assist.  The therapist put out his hand and told me to stand by…she needs to show us she can do this.  And low and behold….my mother got out of the car, stood up grab the cane from the therapist and walked up the pathway to the door as if nothing was wrong!  She opens her purse, pulled out her keys and unlocked the door went in turned and asked what he wanted her to do.  For the next 20 minutes she follows through with everything he asked as if nothing was or ever was wrong with her.  My mouth was hanging open!  I was shocked!  We all walked out of the house and she locked the door turn and went to the car on his directions got in and sat in the passenger seat.  He was finish and announced that he saw no reason why she could not come home.  I got in the car and turn to her to say how proud I was when she turned to me.  With a mocking smile on her face she stared at me with lighting eyes and said “See! I don’t have to do therapy!”

She faked them out.  When my aunt learns of this she laughed.  “That’s your mother!  She always will do whatever it takes to get what she wants.”  She then told me how when my mother was a little girl she pretended to be sick to get out of a church function.  My grandmother not knowing if it was true or not gave in.  My aunt told my mom she was faking it.  And to prove my aunt wrong she deliberately stayed in bed for a week…missing out on other events just to prove it.  But she was not sick.  And I had just been made aware of the “dark side” of my mother.  My aunt also reminded me that my mother has never or will ever do exercise, because it is a discomfort.  Now it all made sense.  And I was duped.

 It is so hard as a caregiver to comprehend what is going on.  Intelligent people.  People who raised you.  Loveable nurturing people…and yet they insist doing things on their own or not doing it.  It would be so much safer and easier to accept help – at least you would think.  But for some reason all sanity is blown to the wind.  So how do you deal with it? 

First of all, know something about their past.  My mother never did anything that was too discomforting.  Therefore, why would we have imagined she would accept therapy? 

Know what they will do and use it as an incentive.  Dangle that carrot in front of them.  If it works remember and try it again.  If it does not…try something else. 

Don’t give them a time frame or an incentive to go back to bad behavior.  An example: “try it for two weeks, if you don’t like it then….”  Well you just cut that string to the carrot.  Instead say let’s try this for a while and then see what happens.  Don’t give them an actual date.  They will focus on that date instead of what they need to do and you will never accomplish anything except they would get their way.

Maybe you are not the voice they need to hear.  Is there another person they will listen to?  Sometimes this is where doctors can do wonders.  For some reason that generation still believe doctors walk on water.  So throw a little water their way and get them walking.

Do not fight.  Do not get into a struggle of wills.  Do not become confrontational – physical, vocal, emotional.  Stop it from escalating by turning away and breaking eye contact.  Don’t keep the argument going by answering or name calling or mimicking the behavior.  

Don’t beat yourself up.  The moment you feel overwhelmed, exhausted, abused or catch yourself getting mad…take yourself out of the picture.  Don’t just walk out in a huff.  Try to take the time to explain that you need to leave because you both are saying things that are hurtful. 

Talk to a social worker, therapist, someone who understands what you are going through.  Seek a support group.  Take time for yourself to understand the emotions that are taking over you. 

Remember, they are just as emotional as you are.  As you are fighting for their safety, they are fighting for their self…. the ability to make their own decisions. 

It is a minefield.  It is full of bombs whirling through the darken skies.  It is full of foul smells and cries of agony.  IT is call the other side of caregiving.  The one that no one likes to talk about.  But there is a blue sky.  Get yourself to a support group.  You will find yourself mirrored in all their faces.  They too are husbands, wives, sons and yes, even daughters struggling through this mine field.  But there is safety in numbers.  They hold each other up.  They guide each other through the dark times and they cry together during the pain.   

c

My mom seemed to enjoyed her winters in California.  I had lived in Pasadena the first year of her “winter” visits, and then moved to a place called Fillmore.  It was a small town of 3000.  I called it the Mayberry of Southern California.  Where everyone seemed to know each other.  You paid your electric bill at the sporting goods store.  You paid your phone bill at the Flower shop.  If you want stamps, you just buy them from your post person as they delivered your mail.  23 churches (about two of each religion, since they would have disagreements and form their own church). A small public park square with a band shell. It was a cute little town.  Just perfect for Hollywood to come up and use the main street in their films.  You expect to see Andy and Barney coming down the street.

For the Fourth of July, everyone went to the high school football field and piled into the rickety stadium seats.  A record player played over the crackly PA system patriotic tunes that was interrupted to inform some child’s parents to get them off the snack shack roof or not let them run on the field.  After the fireworks then everyone went back to their home to set off their own “missiles’” and I mean missiles.  This was the only city in Southern California that allowed fireworks and they were crazy about them.  It was amazing that no one got killed or the town burnt to the ground.

I lived in an old 1940’s side by side duplex.  Typical of houses those days, they sat on cinder blocks.  Just waiting for an earth quake to knock them over.  Next door to the duplex was a nice couple of my mom’s age.  So when my mom came up for her Winter vacation,  I introduced her to the neighbors.  They enjoyed each other and would sit out on the porch sipping ice tea and enjoying the California winter.  She also was able to attend a church in a town close by that gave her even more opportunities to meet people.  This was just the perfect location for her.  She seemed to thrive there.  With her having her own friends gave me time to be with mine.  But I started to see a pattern emerging.  My friends no longer wanted to come over when she was there.  I was going to their place instead.  When my mother returned to my sister’s house, my friends wanted to come over to my house again.  It was strange, but I had no idea why at that time.

Close to the end of her stays – whether it was at my sisters or mine place, the phone calls between my sister and myself would escalate.  Each of us would feel trap and frustrated.  We needed space.  We needed to get away.  We each had “war stories.”  And we each clung to the other because we knew someone understood the madness.  It was coming to the end of my mother’s winter vacation and I needed the break.  I needed to reclaim myself.  My house.  My cupboards.  My TV.  My shopping.  My friends.  My identity.  My LIFE!

My mom turned 70 one year while at my place in California.  I decided that I would take her to Disneyland .  I thought she would enjoy it and why not….it is the perfect place.  I knew she has said in the past that she did not like Disney World.  When she was in Florida for a few years she would complain about it.  I took it as all her Northern snowbirds friends always wanted to go there when they visited her,  and she was just tired of it.  So the night before, I informed her to have walking clothes and shoes on the next morning and we will have a early start.

Not knowing where she was going she just enjoyed the hour and half ride.  When we got to Disneyland she was upset.  She did not want to go inside.  I finally persuaded her by promising we would just stay for an hour.  As we walked down the main street she was not impress.  I was bewildered….here we are at Disneyland…how could you not be impress?  We were coming to the end and ready to move on into another area.  She really protested.  She was not going any further.  She would not go on any of those rides.  After all, she is 70 years old.  Then I realize.  She thought the rides were roller coasters and such like that.  I tried to convinced her to go on the train ride, which again she saw it as something else.  This time a child’s ride.  So we bickered, walked into Frontier Land.  I got her to the Golden Saloon and in we went to have a “rest” and decide what to do next.  Then the show started.  And then, my mom started to see a whole different side to the “rides”.  She was transfixed.  “I never knew they had shows.”  So instead of calling them rides, I started to call them shows.  And it worked.  We went everywhere!  She was pulling me, eager to get to the next show in time and the good seats.  We spent the whole morning going to “shows.”

Finally after the Country Bear Jamboree, we took a break.  We went to a food place that at Disneyland – the restaurant over looks Tom Sawyer’s Island.  The paddle wheel boat would pass the deck where we could look out and enjoy the somewhat quite view.  After all it was Disneyland.  The soft banjo music playing and the good food.  It was nice and restful….until my mom shot up and screamed!  Then she ran.  I had no idea what just happened and looking around and getting up I had no idea what was going on.  She ran, pushing children away to get to… Goofy!  Here was my mom, the one who did not want to go to Disneyland, who was not going on any rides….who is 70 years old and she is overwhelmed with seeing Goofy!!!  I believed Goofy was taken aback by her hugs!  All these little kids surrounding Goofy and my mom!!  What a sight!  Then a bigger scream!  “Mini, Mini!”  My mom called out when poor unbeknown Mini Mouse appear.  Another run pushing kids aside and crunch moment.  My mom was so happy and so excited.  I truly believed she thought I had arranged it all.  And for that moment, I was the good daughter!

We spent the remainder of the day going from one “show to another.”  Enjoying the fun and wonderment of Disneyland.  She embraced every magical moment.  At one point we were sitting in a park area overlooking Main Street.  The Barbershop Quartet had just sung and moved on.  The cotton candy vendor was making the best smelling cotton candy.  People were happy all around.  And of course the music in the background softly playing.  The lights were just coming on.  We sat there in a nice warm second breath of silence when my mom looking out on the horizon said: “I just never realize there was anything worth seeing at the end of Main Street.”  She then explain that all those visits with her friends and family at Disney World was boring to her because she never wanted to go on the “rides.”  She stayed on Main Street for hours while the rest ran around.  She never knew there was a bigger world to see.   She never knew there were “shows.”  I sat there, trying to keep my mouth shut and allowed her that moment.

We stayed into the evening to see the fireworks and by that time taking longer rests.  I am sure Goofy or Mini Mouse was staying far away from us, because we never saw them again.  On the drive home, my mom fell asleep and I smiled.  I was the good daughter.

So many times we see the world out of our own eyes and forgetting the view of the other.  I did have to push my mom to go to Disneyland.  But I just could not believe anyone would not like it.  What I fail to see was her point of view.  Her perspective.  Could we have talked about this before and would she have been more open?  It is hard to know.  Rides meant fear. But once I divorced the word “rides” she accepted a word that meant to her sitting and watching, not so threating.  And once I knew that “shows” was that word – for the rest of the day that is what I used.  There were some moments that I had to do fast thinking and reassure her that they meant show instead of rides like on the brochure map.   I soon tucked that information out of sight.  Yet, her world open up.  And I saw a side of my mother that I had not seen before….she was young again.

That day is hard to put into words.  It is a special memory for me.  It is hard to put into words because it was so much more than words could describe.  On that ride home as I contemplated my success I also realize why it was so important.  We were changing.  I had been looking at my lost more than hers.  I was overwhelmed with this process and what it really was about.  That is caregiving.  Once you answer that phone call…you have no idea what it means.  There would be really hard times ahead.  Times that I just wanted to run away and hide.  There were times yet to come that would take me down to the very existence of my soul.  But there also would be moments like this day at Disneyland. A very special day indeed.

My aunt had the same doctor for a number of years.  She was happy with him and felt he did a good job for her.  I had made sure when I called for an appointment to talk with his nurse and let them know ahead of time all that had happen.  So when we got to see the doctor I asked my aunt in front of him if I had her permission to explain to him how I found her this morning and that things were a bit off.  His reactions was that I was stepping on his authority.  He responded with a cool get down to business let’s move on approach.  As if we had come just for shots.  Nothing seemed out of the ordinary to him.  All her vital signs were good and she was talking and following the conversation.  Weight was down a bit, but nothing to be concern about.  That was it.  I again explained to him what had happen the last week and asked if it could be a UTI (urinary tract infection).  He seemed imposed but had his nurse draw some fluids for a test.  That was that.  Even my aunt was amazed.

On our return ride to her apartment we stopped off to have lunch.  I was still astonished over the doctors reaction when I noticed that my aunt was woofing down her meal.  I gave her some of my food and she ate it all.  I asked her again if she had breakfast – yes she did.  It was interesting.  So we stopped to get groceries and this time I picked up some fruit and bottle water.  We agreed she would drink a bottle a least each day.  We arrived at her apartment and I started to put the groceries away when I notice…the food from the Monday before was in the same place.  I quickly looked at the counter where the cookies had been and saw that they were almost gone.  Ah ha!!! She was just eating cookies!

Equipped with this new knowledge I sat down and started to talk to my aunt about what she liked about this place and what she did not.  It was a senior housing, but without food services or nursing.  She said she would love to have someone else to do the cooking for her and reminded me she told me that before (She had about six months ago before my mom’s stroke but it was just part of a chatty conversation.  I did not take it seriously). I asked her if I could find a couple of places, and would she go with me to check them out.  She agreed.  I would call the next day and see what we could view for the next week.  She also agreed to let my mom or myself to call for reminders to eat and drink water. I told her I would set her up with meals on wheels.  She reluctantly agreed.  When I got home I called my mom and explained all that happen.  I suggested she ask more questions about my aunt’s food to see if she really ate anything, not just did you eat.  My mom said she had a friend living there who would check in on her and have her come to supper.  Feeling good about the plan, I started to work on possible housing with services.

As I was setting up meals and tours the next day, my aunt called.  She said she started to think more about it and did not want to leave her place.  She understood she was not eating right and she would promise to eat better.  That was it.  Maybe meals on wheels in the future, but not now.  She hung up before I could say anything.  Then my mother called and begged me not to push my aunt on moving.  My mom promised that she would have her friends check auntie and just to give her some time to think.  Of course I could not force my aunt to move.  I thought we had a good plan.  With all these promises I agreed and would give the weekend to see how it would go.  My mom begged me not to call my aunt for the weekend…she would.  I agreed.  Big mistake.

The weekend went really fast.  I talked with my brother and he had talked to my mom and all seemed to be well. I called my mom, and all seemed to be well.  Monday morning came and I was at work.  My mom called.  Something is wrong.  Auntie Vi is not picking up her phone.  Calming my mom down, I told her maybe she is down getting her mail or, and before I could say anything more she yelled…”all weekend she has not answered her phone.”  ALL WEEKEND!!!  I responded.  “And you are just now telling me???”  “I thought she was down stairs getting her mail.” my  mom said.  Taking in a deep breath, I reassure my mom that I would take care of this and would call her back.  I then called my aunt’s housing director and asked if she would immediately go and check on my aunt.  She did.  They found her wrapped up in her sheets on the floor of her bedroom.  She was aware of the housing director but not much more.  911 was on their way and I left to meet them at the hospital.

Evidently my aunt had open her bedroom window to let air in as she always does (because the bad furnace smoke could kill you…even though this is the 21 Century and she has electric heat).  But with the weather in early April it changes fast and it got colder and started to rain.  She woke up and decide to close the window but got her feet tangled in the sheets and fell.  She was unable to untangle herself and ended up getting more tangled.  From laying on the floor for two days and three nights she was dehydrated.

When the ER doctor met me, he was ready to tear my head off.  Explaining that so many families just do not care for their elders and leave them to fend for themselves without understanding that they need help.  I understood his frustration – but this was not the situation.  I quickly explained about the last week.  As I was doing so, my aunt moved her head up and down in agreement with me.  I took the doctor aside and asked if he thought she should be in an assisted living or at least housing with services (knowing full well she did).  He agreed.  I asked him to tell my aunt that and even write it down!  Because my aunt will listen to him before me.  He did.  At that point the nurse interrupted and told him that my aunt had a UTI.  We both looked at each other with that knowing look.  They would keep my aunt in for a few days to give time for the medication to take affect and that would give me some time to find a place for her.

The next day I would then explained to my aunt that she would need to find a better place that would take care of her.  I did a lot of thinking over that.  How would I convince her to move.  I really did not get any sleep.  Prepared for the worst I went into her room the next day to present my argument as if I was facing the Supreme Court.  I brought her flowers which right away she started to cough “Take those out of her…I hate the smell of dying flowers!”  I explained that they were brand new.  “Get them out of here!”  We were not off to a good start.  After I brought the flowers down the hall (as far away from her room as nose possible), I sat down next to her bed.  She started to tell me that she was upset with that apartment building for letting her lay on the floor for so long.  After all the money she gives them.  At first I almost started to explain that it was not their fault…but then I took the opportunity to present a different version.

“You are right Auntie Vi.  That is not the place for you.  Paying that much money you should have…a hotel!  Where they prepare meals for you and clean your room, fix your hair and nails,  and have parties and….would that not be so grand?  And then mom would be envious of you.”  She looked up and thought about it for a few moments.  “Yes!  That is what I want.”  And that was that.

The moral of the story:

• Holidays are a perfect time to do a bit of a check.  Are there any differences that you notice?  Are your out of town relatives annoying you that something does not seem right with Uncle Bill?  Don’t hush them.  Ask them why.  Let them tell you from their eyes what they see.  It may be nothing…it may be something.  Make a note of it.  Write it down.  It may not amount to much…this time.  But you will have a note to help you remember next time.  Changes in people can be small and unnoticed to those who see them daily/weekly.
• Dehydration is a major issue in elderly. Drinking coffee with caffeine is not hydration.  Thirst is not a reminder.  We need to encourage water.  Add a lemon or lime to make the water “special.”  Also, electrolytes are affected by dehydration and they need to be replace.  Ask their doctor for suggestions.  Think sports…there are good hydration drinks out there but they are not to be used every day.  They are not a substitute for proper water and food consumption.
• If you are multi-tasking in the caregiving area, have someone else take some of those duties off you.  If there is no one, check with local senior programs for services like adult day programs.  They are a daily support that will give you ease of mind.
• Eating proper meals, not frozen TV dinners which are high in salt.  There is no drink substitute for a good meal.  So unless it is doctor orders – real food.  If the preparation is too much, meals on wheels.  If it because they are lonely and need companionship (people do eat better when others are around), senior centers that server a hot meal or find a friend to eat with.
• Check those refrigerators.  Look to see if things have been open or if they are past their expiration date.
• Start developing good relations with the doctor’s office.  Yes, your parent may be threaten by this, but if done in small steps at least the doctor office will know you.  Tell them ahead of time your concerns/issues etc.  Read your notes to them.  If they seem to dismiss your concerns (real concerns about their health)…maybe time for a change.
• Use your doctors influence to help the elder to accept new ideas.  Remember, they are still the geration who think Doctors walk on water (now the baby boomers may be another story).
• There are a number of options for senior housing.  Do not look at it as a one move to end all problems.  There will be another move…or two.  So make your decisions based on the what if’s of life.
• Above all, go with your instincts.  If something looks wrong…something may very well be wrong.

Looking back all these years I wonder if my aunt had chosen a better complex to live in would her quality of life been better.  That six months while my mom was healing were six months that my aunt lost support that we were not aware of.  We had no idea because my mom was covering up for her if she realized it or not.  She was my aunts fail safe; my mom phone calls gave her reminders and kept her alert.  While my mom was gone – no one was there for those daily tasks.  Our once every few days phone calls, which seem appropriate at the time,  did not replace my mother’s hidden duties.  We see this a lot in couples.  Covering up for the others lack…is normal.  We even make jokes about it.  Think President Reagan with Nancy whispering in his ear the name of a person approaching them.  It is part of being a couple that they soon do not realize (or do not want to tell) and it becomes just a way of life.  That is until one is sick or hospitalized or worst.  Then families are taken aback just how much the other needs help.

My Aunt loved her new place and enjoyed all the convinces, as if she was living in an expensive hotel.  My mom and aunt still continued with their phone calls to each other.  My aunt found a whole new audience to teach about those dreadful candles.  When she passed away, I found what seemed like a ton of those little newsprint cutouts explaining the dangers!  And all these years later, I still forget the jello.  I just know she is up there elbowing my mother saying…”I knew it!”

 

My Auntie Vi was my mom’s older sister.  They did not get along very well, but as they grew older they bonded together as if holding on to each other would keep what was to come away.  They would have moments of great disagreements and then they would do the kindest thing for each other.  It kept us on our toes.

Auntie Vi had very strong opinions.  she had this habit of cutting out articles from the newspaper (and making copies) to hand to you whenever she saw you.  Mostly to point out where she got her information from and prove she was right. If that didn’t work she had other ways.  Such as the time she felt we were all going to die if we burned candles, not because of the fire but the fumes.  If we were sitting at a table that had candles lit she would softly remind everyone of the dangers.  When no one would acknowledge this, she would start clearing her throat louder and longer.  She would do this until someone blew out the candles.  Or we could all sit there continue to eat our meal and ignoring the elephant in the room, trying not to give eye contact and keep conversing.

One year I made a wonderful Crown Pork Roast.  She convinced my mother they would die when she saw the meat was pink.   They were so upset I had to take their meat and nuke it until it was almost leather.   To their credit when they were younger it would have been a health risk to eat pork that was pink – after explaining this they would yell “you’ll get worms!”  Because of all the fuss I had forgotten the jello salad until after everyone left the table fo which my aunt exclaimed:  “I knew it!”  And every year after, she would remind me not to forget (and every year it seemed she was right).

My mom and aunt talked on the phone, not once but many times during the day.  It kept them grounded.  It kept them alert.  It gave them a purpose.  At times they would drive the rest of us crazy with the relentless phone calls…but it was good for them.  It kept the sisters together.

It was Easter time and I was to pick up my aunt.  She lived across town and it was an easy trip.  This year we would be going to Stillwater to have dinner by the boat docks.  My brother thought it would be nice for my aunt and mother since they grew up in Boston and always talked about the water. The past few months our attentions were on my mom’s health.  She had had a small stroke.  She was now back in her apartment and doing well.  My aunt had been worried for my mother and missed their daily talks.  So now that my mom had returned home she was very happy to have the calls again.  All was going well for the outing.  We were starting to breathe again from my mom’s stroke.  Things were getting back to normal.

That Easter morning I got a call from my mother.  My aunt was very mad at me.  I was not there to pick her up and…there were more words regarding how bad I was.  I looked at the clock and it was two hours before I had to pick up my aunt.  I explained that to my mom, reasoning that why would I pick her up two hours early to just drive around?  My mom was upset and still was not the best in her reasoning skills from her stroke.  I hung up and called my aunt.  She would hardly talk to me.  She asked “how could I do this to her!” and hung up.  My brother soon called and told me because I forgot to pick her up he would.  He heard the story from mom and he understood.  But to keep all happy I would pick my mom up instead.  We hung up and I stood there numb.  What just happen??

My mom and I arrived before everyone else.  When my aunt got out of the car something hit me.  Something was not right.  My aunt was presentable enough but her hair which is always perfect was not.  Her clothes and shoes did not match and that was a big no-no for her.  I was helping my mother to the table and asked if she noticed.  My mom was more concerned about making any disruptions and begged me not to say a word.  So we sat together and started in the polite conversations, keeping everything positive.  Out of the corner of my eye I did noticed that Auntie Vi would be talking off in the distance about the water and it didn’t make sense.  It was as if she was pointing to someone or asking for someone.  In the rush of ordering and getting our food her comments lost to others kept waking my “work” senses.  Something was wrong.  She was not eating much.  She was off.  Not completely, but enough to make me wonder.  I encourage water and food and soon realize my instincts were right.  I pointed out to my brother what was wrong and told him I would take her home.  But this time she was calmer around me and the glass of water started to make a difference.  She was more alert and seem to be able to track our conversations to the point my mom thought I had over reacted.  I started to second guess myself and came to the conclusion that maybe I had.  But I still wanted to take her home to see for myself if anything was out of the ordinary.

Walking into my aunt’s apartment I saw nothing out of place.  I did a sweep as we talked.  I checked her kitchen cabinets as well as the refrigerator.  All seem well.  She had food that was up to date and even some cookies on the counter with only one or two gone.  So in my check list it seems that maybe it was dehydration and she was doing well now.  I made sure she had some more water before I left.  But something kept me from leaving.  How could it go down so fast?  She was so upset with me in the morning.  I checked her wall calendar and there it was…the time for me to pick her up was right.  I then check her clock to see if that was wrong…it was not.  So at that moment I made a decision.  I  stepped out of the niece persona and went into my working persona.  I went back to where my aunt was sitting and asked her about what she remembers about the day.  In the conversation she was not aware that she had been mad.  I asked her about her hair and if she did it and why not the salon. She could not remember and thought maybe she did not make an appointment (she has a standing appointment).  We talked a bit more and then I explained to her that I have been noticing her forgetfulness.  We talked about these changes and I suggested that maybe I should make an appointment with her doctor and I would come with her – since I could remember better.  She accepted that.  She was doing fine now and I knew she was in a safe place.  I left with a new list – to write down these changes/issues and call the doctor in the morning.

I could not get her in until Thursday.  I had alerted the senior housing staff and was assured they would look in on her.  I called her every day to be sure she was doing well with reminders of when I would pick her up.  That Thursday morning I called to remind her what to wear and time for pick up.  She agreed and would be ready.  I got to her place and when she open the door – there she stood – fully naked and looking a bit panic.  She could not figure out what to wear, or what purse to take.  She was not aware that she was naked. I quickly got her back inside and closed the door.  The niece persona was shocked.  The working persona took over.  As I was helping her get dress I realize that even picking out a slip or shoes was hard for her.  Calming her down and reassuring her I asked if she had eaten breakfast and she said she had.  I gave her a glass of water then I combed her hair and off we went.  I was glad I had made this appointment and ready to get help for her from the doctor.  What I was not ready for was his reaction.

to be continued….

 

 

 

On the way to get some hot coco on a cold winter day, my friend asked me that question as he turns the car into traffic. Out of the blue he asked. Nothing in our conversation before was there anything near this subject. Actually, we never talked about caregiving in any length before. He knew I had worked in the field and he knew I was a caregiver. But he never really explored this subject with me.

I asked him to clarify his question. “What do you mean.” Then the flood gates open and soon four hours past. I hardly spoke. It was his time to release all the pressure that had mounted up behind those gates. He needed to let it go. And he did.

You know that song, “You’ve got to know when to fold…” Well, in talking to another caregiver it is like that. You may have the knowledge, but unless they are at the same point…you got to just “hold.” Finally he asked again, “When did they get so mean?”

That is a good question. Not every elderly person gets mean as they grow older. But I have heard and seen people who did “change.” Not like the famous movie “The Body Snatchers”, but almost. Like over night they became this mean, complaining, demanding person. Grumpy Ol’Men type. When did that happen?

It is amazing when it does. When they are around other people, they can be sweet as pie. But at home, it is different. Radically. But is that not all of us. In public we are good. Then we come home, throw off our shoes, put on some comfortable clothes…and puff…we are home. We can say, itch, eat whatever way we want. Or until one of the other family members come home. Yet, even then we conduct ourselves on a different level until company comes. So we all have different personas. We all have different levels of acceptance of those personas. Therefore, we all can let loose and shock the people around us with our behavior…good or bad.

Living alone does not help. You start getting too use to letting go. What is acceptable and what is not becomes larger and larger but their world is getting smaller and smaller. As more family members move out, the smaller their world becomes. Pretty soon just making a meal becomes either too much…or who cares…just eat some popcorn. . Physical changes increase the problem. Hearing, seeing, feeling starts taking their toll. Pain creates havoc on anyone and if it years of pain….you start letting go.

I remember one of the first times when my mother snapped at a waitress. I was horrified! Her voice was not only piercing, but it was loud and the whole restaurant could hear. The next time it happen, she kept going…as if it was acceptable. But it was not. I politely told her so. She backed down right away. It was hard for me to do that. Here I was reprimanding my mother.

Somewhere out there, there is a manual of life. It tells you how this life of ours works. In the back there is a larger section on Troubleshooting. We all have those little booklets that come with a new gadget…or at least we glance at them Troubleshooting is only when things go really wrong and even then we do not read it as closely as we should. Of course dealing with humans…that would be huge! In other words there is no manual for getting old. There are only assumptions. Ones we believe we know, ones that were taught and ones we just made up.

We learn from our parents and those around us. They teach us how to eat, walk, talk. We learn from them how our emotions work – good and bad. We learn from them how to spend and save – good and bad. But somewhere in all that learning there is nothing about becoming old and how to deal with it. You are lucky if you had a grandparent living with or close by. You gleam from them how it is getting old and dealing with it. The same for how your parents dealt with them – good or bad. If you did not have an older person in your family your knowledge may have come from the cartoons, books and movies. Remember Mr. Magoo? Or the little old lady who took care of Tweedy Bird? Eyesight problems. Hearing problems. Hunch over. Talked with quivering voices. If you were to ask to portray an elderly person how would you do it? Crunch up your face. Squint your eyes. Pull in your lips. Hunch over as if using a cane and shake? Looks like Mr. Magoo to me!

So what do you do about it? Simple. Put yourself in their place. If it is just because they are getting too comfortable with being by themselves….time for more visitors. Isolation will zap the need to be nice out of anyone. It also allows a person to let a little too much go. So check the wardrobe before you leave. Complement them on items that they would look better in (or even cleaner). Give them genuine positive feedback. Maybe a good cleaning of the closet and a shopping day would help.

It is not always the obvious that lays the problem. Maybe, they can’t do the things they use to. Such as bathing. It could be as simple as needing grab bars for safety in the bathroom. Or the wash machine is in the basement and stairs are too hard to maneuver without better lighting. If they no longer drive, how can they get their hair done? All of these little things build upon the larger from being a winner or failure.

Pain or medications could also be at issue. When you don’t feel good, you are not looking good. Pain bites away at your inner sole. It tears, grips, and pounds you down. Sometimes with medication you have no idea how you are reacting. Sometimes you have no control. But it should not stop a person from interactions. And sometimes, taking a breath before we react gives a moment for that pain to ease up. The goal is not to center on the pain but the change environment to get your mind off the pain.

And then there is the behavior. I learned after pretending it didn’t happen to finally realizing that I had to do something. Put it this way. If your mother or father wanders out in the middle of traffic would you even hesitate to go get them and bring them to safety? The same goes for a “mean” behavior. Yes, I had to reprimand my mother. It was hard. But the alternative would be worst. And I have seen it. Where an adult child is yelled at, shouted at, belittled, negative name calling, it will escalate. It will start to become on the borderline of vulnerable abuse by them or the adult child. Therefore a little nudge and reminder is better than a yelling match. Find that sweet spot that they will respond to. Give them dignity but be firm and be consistent.

When did they get so mean? Some day they may be saying that about you. How would you want them to respond. This is a teachable moment with your children. Let them know by your actions. And yes, this is hard. It is very hard. But if this didn’t bother you then you would not care. Since you care, that means there is hope. Find the activity, people who will make both of you have a great time so that the pain, medication or other interference would pail. For my mom and me…it was shopping! But that is another story!

The phone rang….it was my brother with a question.

At some time, when I moved backed it was agreed that I would host Christmas Dinner and my sister-in-law would host Christmas Eve. I had a small one bedroom 1930’s apartment (another day for the story on how I got there). It had a formal living room and formal dining room, but a very, very small kitchen. I tend to over decorate…or I did then. But the place was just so cute and it was so easy to make it so festive. Anyways, back to the phone call. My brother’s out of town In Laws had decided to come for Christmas and wanted to make sure it was ok for them to come to dinner.

Now normally this would not be a bad thing. But our life was no longer normal. About a year or two before, my brother and sister-in-law thought it would be a great idea to have my mom and the in-laws up at the cabin together. Well, bad mistake. My mom and the mother-in-law did not get along and matter of fact they had a nasty argument which is still part of the family fork lode. I was not there, but my mom was very upset and did not want anything to do with “that woman.” On the phone my brother was wondering what to do, since if I did not have them all for dinner, then none of them would be able to come. This was a very interesting predicament. I told him that we would need to talk it over with mom. I was the chosen one to call her.

This was a hard one. It could go either way. My mom was a very strong willed woman. And so was the In-law. This spelled disaster to me. But, I called and after a long silence, my mom agreed. I played the favorite son angle. She loved my brother and I set it up as how he was so worried of not hurting her feelings, but what could he do. She did not like it and her Christmas would be spoiled…but it was for her son and she felt she needed to protect him. Whew, that was a close one. But of course that was just a phone call, now on to the actual day.

I called my brother and told him it was ok. Then he informed me that the father-in-law had dementia and tended to get agitated easy. He had to go and left me sitting with the phone in hand in silence. Wow, as I looked around. Wow, as this small one bedroom place got smaller. How was I going to pull this off without the world falling in.

What you do not know about me is that I have worked for a number of years in a program for adults with dementia. I was at that time an Adult Day Services Director. This is a program where activities, games, crafts, socialization, outings are structured to provide independence with guidance of staff. Therefore I knew what would help and what would be an issue. I decided that my mom and the mother-in-law were not the most important persons at the dinner. It was the father-in-law. So, I took control.

What you do not know about me is that I also have put on conferences and programs where everything had to be timed. So I took out my pad of paper and outlined the day events, including my meal. Everything was timed…allowing of course for the unexpected bumps.

From the moment they arrived I set everything up for success for the father-in-law. I greeted him as if we knew each other for years. I helped him off with his coat and joked about the weather (so any confusion over the mechanics of unbuttoning or pulling arms out of the coat would not be noticed by all). I escorted him to a pre chosen comfortable chair that did not offer too many distractions or over sensory (not by a window or in crowed area). I controlled the conversation with gentle questions pointing to my tree and asking if he ever cut down a Christmas Tree and let him bring up those memories that were still intact. My mother picked up on the subject (not to be out done about memories) and soon they all were enjoying memories. I was able to get back into the kitchen for last minute preparations.

It was time to serve the meal. I had his seat at the head of the table…an honor that was part of the family table in his day. I reminded him that he was a very valued guest. This is important for people with dementia at his stage. He was aware of people watching him. He is aware of his mistake and it is frustrating. They know something is wrong and they are losing their self-esteem. They know they will be corrected and they try to hide their mistakes. When pointed out or failure to cover it up…this is when they could become agitated. So you need to stay ahead of the game or quickly change the play.

I made sure that my sister-in-law sat next to him and that the mother-in-law sat by my brother…but on the other side of the table from my mom. I did this for two reasons. To keep mother-in-law from correcting her husband, and to give her some relief. After all, her over correcting takes a toll on her too. To make sure, I had name cards. “Oh, how fancy.” “Yes, my daughter is the Martha Simpson of the family.” Ok, it was Steward…but it was a complement!” Ok, it was just a snob remark too.

My mom gave the grace and before anyone could eat, that year I introduced my family to the English Crackers. They are the cute tubes that you pull apart and they “crack” with a hat, a joke and toy falling out. I found a kit that you make your own. So instead of a stupid joke that no one in the US understands I put in a question. Choose your favorite Christmas Song. I listed two. When they picked one, then we all sang it together. It was a picture to remember. Everyone had on their paper crown hats, singing together. The father-in-law was enjoying himself, not concern if it was right or wrong. He was in the moment. They all were. And we were sharing together…on the same level.

After we finished our meal, more fun! I made sure that we stayed at the table a bit longer. With my brother’s help we cleared off the table while they played another game. A simple but enjoyable memory game: a word that brings up a memory for which they had to share with everyone. Then it was time to go into the living room back in their chairs and listen to soft music or restroom break. Not aware that this was all organized. They were having so much fun. Then we played Dirty Santa. They never played that before and were astonish that it would be so much excitement as they won and then lost and then won a present. Showing off their gift (which was silly little items) I made sure that the father-in-law had a larger gift that would not break or loose small parts.

We ended with a dance around the coffee table. This was more for my brother. When we were children at our Swedish church they would put up the Christmas Tree in the center of community room. After it was decorated they would play Swedish music and everyone would grab hands and dance around the tree. One of the songs was called: Nu Ar Det Jul Igen. It was a fun folk dance with a melody that sticks in your mind forever. We never could say it right or sing the words. But we knew the melody and often would remind each other. I had a tape – yes the old fashion tapes. No tape player. So I traveled all the way over to Minneapolis to Ingebretsen’s Swedish Meat Market and Gift Store. No one under stood what I was trying to pronounce…so with all my pride put behind me…I sang the melody. No one knew it. They called the boss and on the phone I sang the melody. BINGO! Got the CD and went home over the river and through the neighborhood happy as a lark!

Now, in this very small apartment with six people dancing around a small – I mean small coffee table was in itself something to behold. But, they all were laughing and shouting with joy. It was golden. Soon it was time to go. Everyone had their coats and I was lost in the shuffle. I heard my name called urgently. It seems that father-in-law would not go out the door. He froze and mother-in-law was getting upset, demanding him to move. Sister-in-law was trying to soften the moment but did not know what to do. My brother was calling him trying to get him to come down the stairs to him. Nothing was working. My mom called out for me. Everyone just parted the sea as I came forward. I could see caught in the door that father-in-law did not have his coat zipped up and he was fumbling with it getting more and more agitated. I asked everyone to go out to the car. Smiling I said to him, “People are crazy, they think they are helping but they are not!” Acknowledging the moment with him, I asked to help him zip up his coat. “Can’t they see it is cold outside and why would you make anyone go out in the cold.” He said yes with his eyes opening wide…someone understood. “But unfortunately that is how we have to go in order to get home. We had so much fun, I would not want to leave.” He shook his head in agreement. “But, I am so tired…I need to go to bed or I will get sick.” Then I gave him a reason to help me. “Can we get your wife and the others to go home so I can rest?” As I talked and laughed with him going out the door and finding the rail to hold on to, I held his arm tight and thanked him for keeping me from falling we walked down the outside stairs and into the car.” I gave him a kiss on the cheek and thanked him for keeping my secret and helping me. He had a huge smile on his face.

With the astonishment of my family I scooted them all off, waving good-bye. It was work. Well worth it as I watch them drive down the snow fallen street. I stood there in the moment looking towards the stars and smiling. It was over. I was tired and the cold started to get to me…after all I had no coat on. I ran up the stairs and walked back into my apartment. It was quite. I turn down the lights and with just the tree lights I sat back and dozed off.

I put it this way: you need to control the moments or they will control you and you have to do it out of love. I can do this better with other people than my mom. I am too close. The emotions are too raw. But as an outsider, I could control the moment for my brother and sister-in-law. For them, I could give them a nice Christmas. By centering on the Father-in-law needs, I defused the mother-in-law. I made it into a party. The party kept moving so it gave little time for negative comments or being lost…for everyone. It was fun for the elders of the family to tell their memories. Even my mom and the mother-in-law grew together in their storying telling of having to wear long wool stockings to school. They laughed and laughed – together, in their own private world of memories.

After they got back home, the mother-in-law sent me a wonderful thank you. My sister-in-law talked up the day to her family.   The next year my nieces wanted to come for the “party.”   And my mom, she said that she was amazed how nice the mother-in-law was.

Now, if only I can get that melody out of my head….