Discovering Options To Avoid Being an Unpaid Caregiver or Receiving Unpaid Care!

Nationwide, there are has been approximately 450 billion dollars in unpaid caregiving to an adult family member/friend. That is 13% of the U.S. population that provides unpaid family caregiving. These numbers are staggering - these people are left with not only emotional stress but also financial.

Read a family members story.

A Daughter's story

What do you do when your parents need your help?  I remember it like it was yesterday, my father and I are riding home from my mother’s doctor appointment 5 years ago.  “It wasn’t supposed to work out this way” he said to me with tears in his eyes.  I remember choking up and saying, "don’t worry Dad you are not going to go through this by yourself.  You have Sue and I we will see you through this I promise."

The crazy thing that I keep playing over and over in my head is the day my father handed me their funeral arrangements.  He was so proud that he had made, and paid for these arrangements so that his children wouldn’t have too.  But at the same time, our conversation as to Long Term Care Insurance was playing in my head too!  Years before this day I had tried to convince them that they should apply for Long Term Care Insurance.  After all I was in the business and shouldn’t they believe in what I was telling them.  My guilt is haunting me – did I try hard enough to make them understand.  How could it be that we were about to embark on this long journey without the help of insurance?  At this point I would be able to put it to the back of my mind – but not for long.

It was that day we had finally taken Mom to see a doctor who specialized in dementia and Alzheimer’s patients.  She was diagnosed was Lewy Body dementia.   We listened to the doctor, took his pamphlets and l left with some sense of accomplishment, at least her behavior was starting to make sense.  We started her on a regiment of drugs and patches; these were supposed to take care of the hallucinations and argumentum moods. 

With Dad as the main caregiver and these new medications I thought we were going to be fine.  What I didn’t plan on was my fathers’ declining health, due to covering for my mother’s declining behavior and health.  He hid the fact that Mother was back to hearing voices, seeing people who were not there and just the amount of day to day confusion she had.  I got the next phone call, my sister crying hysterical that she had an ambulance on the way for Dad; he is having a heart attack.   Fortunately on this day I am only an hour away at our summer home.  I now find out first handed, what it is like to live with my Mother and the day to day stresses it brings.  I can’t believe that my sister and I had not noticed just how much work it was on my Father caring for her, and how much he had been hiding.   Nor did I realize just what a juggling act it was going to be over the years with her medications.  What works today may not be enough tomorrow.  The side effects are unbelievable let alone deciding which side effects outweighs not taking the drug!
He still refuses help in the home but will accept my sister and I doing what we can to help out.  You don’t realize how much you are needed until you are actually faced with a Mother who is 100% dependent and a father with serious heart health issues of his own.  My Father cannot go to the doctors himself unless someone is there to watch her.  Take her back with him you say, she is so disruptive with stories and questions that the doctor won’t see my Dad with her any longer.  Haircut, he used to take her and she would sit and wait now she may get up and wonder out the door and down the street.  Grocery shopping, hair appointments, dentist appointments we now have to schedule time to make all of this happen. 

My sister is a school teacher with two children, one grown with a son of his own and one grown but with some minor needs and still living at home.  I still work in our family owned business; have 5 grown children and 8 grandchildren.  Both of our days are busy with husbands, work, home children and grandchildren.  Now we add time to help out Mom and Dad as well.  Sue lives in the same town so she gets the brunt of it.  Grocery shopping, hair appointments, clothing shopping any unexpected doctor runs.  She is exhausted I see it in her face.  I don’t want her to resent me so I fly back from our home in FL every 4 – 6 weeks to give her a break, take care of Mother while Dad has his scheduled doctor appointments.  I clean or do any heavy work that needs doing while I am there as well.  I am exhausted as well – catching a plane every 4-6 weeks is very disruptive to my work and life in general.  You think in the beginning this isn’t bad, but after a while it becomes daunting.  I always feel like I am behind, running to catch up and not let down my spouse, children or grandchildren.  I try to schedule plays, birthday parties and whatever else I can around my visits to my parents but that doesn’t always work out.  Plane tickets and rental cars become a burden at times as well.  I made a promise though, “You won’t go through this alone my sister and I will be there to help.” The guilt of saying no, I cannot come, is more than I can accept, I say I’m not going but in the end I am on a plane and heading their way.  

Most people do not plan for the eventuality of long term care Mom and Dad were no exception.  My Fathers greatest fear is “I will run out of money."

My sisters’ and my fear is will my father pass first from the stresses of taking care of Mom.

We are only 5 years into this, how much longer could we be dealing with this?  I don’t know, this is the problem for most of us in this scenario.  What happens if something happens to Dad?  He is our main caregiver now, without him one of us will need to take over his role, then what?  These unanswered questions plague me and my sister daily.  When we get together we find ourselves consumed in what next.  I feel guilt of being 1500 miles away, should I give up my life here to go home and take care of them.  Does this even make financial sense I ask myself.  What effect will this have on my marriage, children and grandchildren?   My sister has similar guilt, can I retire early to take care of Mom and Dad, and does that make financial sense?  I need to take care of their errands but I am not taking care of things at home in order to do this, what about my family! 

Long Term Care Insurance can and has eliminated the stress of money in the event of a long term care illness like my mothers.  I have planned and understand, we are living longer and the longer we live the likelihood of needing care even if for only fragility due to age is great.   I certainly hope everyone including you will do the same.  I know even though the words are not spoken my Father is distraught with his decision not to look at Long Term Care Insurance.  We now do the best that we can. 

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Sally Melledorf, CLTC
Vice President
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