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.