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Signs

A Prayer for the Caregiver
by Bruce McIntyre

Unknown and often unnoticed, you are a hero nonetheless.
For your love, sacrificial, is God at his best.
You walk by faith in the darkness of the great unknown,
And your courage, even in weakness, gives life to your beloved.
You hold shaking hands and provide the ultimate care:
Your presence, the knowing, that you are simply there.
You rise to face the giant of disease and despair,
It is your finest hour, though you may be unaware.
You are resilient, amazing, and beauty unexcelled,
You are the caregiver and you have done well!

 

Several years ago I was on vacation in North Carolina with my husband, kids, parents and my aunt and her boyfriend.  One night after dinner we went around the table and asked each other the questions that James Lipton asks celebrities at the end of the TV show, Inside The Actor’s Studio.  The last question he asks is, “If  heaven exists, what would you like to hear God say when you arrive at the pearly gates?”  My answer to that question was that I’d like to hear the words, “You did a good job.”  I’ve always tried to do a good job, whether it was raising my kids, being productive at work, or just by being kind to everyone.  I’ve always tried to be a good person and do the right thing.

I’m not a religious person.  I’ve never had use for organized religion, but I definitely believe in God and consider myself a spiritual person.  My relationship with God is personal, and I don’t feel a need to share it with other people.  However, in my daily life when I’m struggling with a decision, or unkind feelings, or coping with stress, I frequently ask myself what God would want me to do.  Daily life with a sick spouse can be filled with stress, frustration, anger, resentment, sadness, loneliness, isolation, and exhaustion.  This is especially true when your day also includes raising children, managing a household, and working.

Over the past several months, it’s been a real struggle for me to deal with the resentment I have for my husband, our life together, and my life personally due to an illness we have no control over.  I’ve watched my husband go from a man who was always extremely energetic, busy, and on the go from morning until night, become a man who has so little energy that even the shortest tasks exhaust him.  I’ve watched him go from the life of the party to someone who stares into space, wanders around the house, and sleeps for long periods of time.  It’s extremely hard not to feel resentful when I’m running around taking care of the daily needs of three kids, myself, my husband, a household, and be responsible to go to a job.  I often feel like he is here physically, but his mind is tuned out.

I resent that everything is on my shoulders.  My plate is overflowing.  It makes me not want to do things for him.  I do it anyway.  It makes me want to run for the hills sometimes.  I daydream about what it would be like to run away from it all.  But I stay.  It makes me fantasize about life after the illness, when he’s gone someday.  That will be an awful day, but it will be liberating, too.  All of these things make me feel guilty.  It’s a daily struggle, a never ending cycle of resentment, fantasy, guilt.  We aren’t even at the point that my husband needs personal care, but I’m overwhelmed.  I had breakfast yesterday with my friend Yvonne.  She is my dear friend of 41 years.  I told her all of this and said, “I’m not even really his caregiver yet.”  Her response was, “you still have the mental stress.”  That acknowledgement was priceless for me.

I came home from breakfast and found the above poem.  I believe that sometimes God sends signs.  I believe that poem was a sign for me.  “For your love, sacrificial, is God at his best.” That line changed my entire perspective.  God works through us to help people who need it most.  It made me remember that question that I hadn’t asked myself in a while…what would God want me to do?  My husband is in need of someone to be here for him, not only to meet his physical needs, but emotional support, and to provide a home environment where it’s okay to feel lousy, and sleep, and just be sick.   When the days get rough, and the stress gets high, I will read this poem to remind myself of the good I’m doing for my husband and the example I’m setting for my children.  I’m sure there will be many days that are a challenge for me.  I’m only human.  Hopefully, there will be fewer days of resentment, and more days appreciating the time I have with my husband and making his years as comfortable as possible.

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The Noose

In November of 2007, I returned to the workforce after staying home with my three kids for ten years.  My youngest child was in Kindergarten, and I needed something beyond the mommy and household stuff.  I also wanted to start contributing financially.  We had decided to sacrifice lots of things, especially money and the “extras” it can buy, so I could be home with our kids.  It was extremely important to us.  Two weeks after I returned to work, my husband’s tumor was discovered.  In addition to the toll on my husband’s health and the incredible stress it placed on the family emotionally, it began to destroy any hopes we had of financial freedom.  Over the past almost 7 years, any hope of financial freedom is gone, and has been replaced with the dream of just being able to be comfortable every month.  By comfortable, I mean that the mortgage and monthly bills are paid, we have enough food on the table, and perhaps we can do a few fun things during the month.  Our hopes of providing college educations to our children, or going on great vacations, or giving our daughters big, beautiful weddings are gone.  I don’t know if I will ever be able to retire.

We are in survival mode and have been every single month since my husband stopped working in October of 2009.  It’s a way of life for us.  It is possibly the absolute most stressful part of my life.  It’s like constantly dangling from a noose, trying to hold yourself up so you don’t suffocate. In addition to raising three kids, managing a household, and dealing with an ill husband, I work to try to make ends meet.  Medical retirement and disability payments barely cover the mortgage and food.  There have been times we considered shopping at the food bank.  We get energy assistance so our electricity doesn’t get shut off in the winter.  Our kids qualify for free or reduced lunch.  We didn’t pay our mortgage for 6 months, and still could barely make it.  We get free stuff for our household from the dump.  When we have a little extra, we do something fun so our kids don’t have to miss out all the time.  We do our best to give them things, and as a result we sacrifice what we want, or live with that much more stress.  They only get one childhood, and I refuse to make them feel “poor,” or let them feel as if they are missing out.

My husband and I have both worked since we were about 12 years old.  We both have a good work ethic, and we do what we need to do to provide for our family.  We always paid our bills, and were responsible with our money.  Then the illness took it all away.  I have sat around dinner tables where people talked about how “irresponsible” people are who “live beyond their means” or don’t “keep up with their mortgage.”  They criticize people who need help with mortgage programs, or who “live off the government.”   Comments are made by people who have no idea what it’s like to be in that situation.  People judge with no regard to the facts.  They judge people who would do anything to be healthy and provide for their family.  Living this way isn’t laziness or irresponsibility.

We commonly hear comments from friends or family members who complain about how they struggle or how upset they are over some financial stress they are having.  These same people are hiring people to clean their houses, or are taking their kids out to eat or to some fun event several times a week.  They are planning multiple vacations every year, and buying new cars.  I even had one person tell me they were a little upset that they are now making so much money that they are in a new tax bracket and no longer qualify for the child tax credit.  Their tax refund was going to be less this year.  I sat there like an asshole and gave sympathy, when what I really wanted to say was that I would literally give one of my arms to be in the next tax bracket, rather than struggling every damn day of my life.  I had just told her that we qualified for a new child tax credit because we are low income.  These same people know how hard it is for us.  Sort of.

 

There is a shame that goes along with the way we are living.  I don’t know why.  Shame implies that we have done something wrong.  We haven’t.  We’ve tried to do everything right for ourselves and for our children.  I never, ever share our true financial story with anyone.  We pretend it isn’t as bad as it is. People have some idea, but they don’t know what it’s really like.  It’s exhausting and hopeless and depressing and frustrating.  The stress leaves me teetering at the edge sometimes.  Yet, somehow, we always make it through.  We are lucky to have some family and friends who have been Godsends at times.  There are times we wouldn’t have made it without them.  The struggle is never ending, and sometimes people get tired of helping.  We don’t know if we will ever be able to repay people for what they’ve done to help us.  There is no end in sight to the struggle.  We try to pay it forward and help other people when we can.

People talk openly about the physical, emotional and psychological effects of chronic illness on themselves and their families.  But when it comes to money, people keep it to themselves.  Yet, I suspect it’s one of the most detrimental aspects of living with chronic illness for everyone involved.  It is by far the most stressful part of my life and affects my mood, stress level, health and outlook on life every single day.  The nonchalant comments from other people make it even worse.  I don’t know what the solution is, but putting it out there without shame is a good start.

Abandonment

As I’ve written about in previous blog posts, I have a chronically ill husband.  It’s not a disease that will go away.  It’s progressive and incurable at this point.  It can be manageable, but it’s also unpredictable, and some days are good days and some days are bad days.  Chronic illness affects families in many different ways.  Patients and spouses go through many emotions at different times.  An ongoing theme that I’ve noticed affects both my husband and I, and has a ripple effect on the people in our lives, is abandonment.  We abandon and we feel abandoned.  I can’t speak for my husband, but I can share what it’s like for me.  I have always kept this stuff bottled up inside me for many reasons.  I feel like I have to be strong and be able to handle everything.  But I can’t.  I don’t want people who leave me out, to know I feel abandoned because I don’t want them to feel bad.  So, I feel bad instead.  I feel guilty for having less than stellar emotions.  I don’t know why.  I’m human and entitled to be negative at times, and feel sadness, and feel upset with people.  Mostly, I don’t want other people to worry about me, or have my hard times affect their happy lives.  I know in my head that I shouldn’t feel this way, but since when does that matter?  We feel what we feel.  That is one of the reasons I write.  It’s therapeutic for me, and I think it helps other people who are going through the same thing.  Writing lets me get out my feelings without having to say them.  It’s easier for me.

One of the hardest things that I have gone through over the past 6 ½ years, is the feeling of being abandoned.  There are people who I have thought would be there for me who have not.  I don’t think it’s necessarily intentional, but nothing hurts more than people you care about becoming scarce when you are left to hold together a family affected by illness.  There have been many people who have stepped up and been great supports to us, and for that we will be forever grateful.  But there are others who have not.  My husband has told me that he feels left out of things, and he says it doesn’t bother him, but I think it does.  I know it bothers the hell out of me when I feel left out.  It happens frequently.  We aren’t sure why.  Maybe people think we can’t afford something, or he won’t be up to it, or maybe we just aren’t as fun because we can’t do everything everyone else does.  We wish people would invite us to do things and leave it up to us to decide if we can or not.  Sometimes we will be able to, and other times not.  I need to get out and keep living my life and do fun things.  He is still living and he should get out and do things, too.

Abandonment goes in both directions.  I work, take care of a household, and I’m busy with three older children who have places to go and activities to do.  I’m also looking for a better job.  Thankfully, my husband is still at a point where he doesn’t need me to be a caretaker, but there are days he doesn’t feel well and I do take care of him.  I spend a large part of my life doing for others, and there are those times when a crisis happens and suddenly there is a trip to the hospital.  Out of necessity, I abandon those things that aren’t of vital importance.  My house tends to be messy…who wants to spend a free day cleaning the stinkin house?  I do whatever amount of laundry needs to be done in order to give us clean clothes for a couple of days.  I’ve also abandoned certain dreams…buying a bigger, nicer house…spending my older years traveling with my husband…retiring, in general.  There are those times, when I don’t feel like doing anything on the weekends, so I don’t seek people out to do things with.  When you spend your weeks always doing, a day off to do nothing is a luxury.  A day to myself, doing anything I want to do is almost unheard of.   Because of this, I have done my share of abandoning some people.  One of the people that I don’t spend nearly enough time with is my Mom.  But she is the one person in my life who I know will NEVER abandon me, no matter what.  It’s not fair to her.   I am going to change that.  The irony of all of this is that I feel abandoned, and the one person who has never abandoned me is the one I leave out.  Sometimes, I just feel like I have nothing left to give.  I’m tired.  There are also times I feel like I’ve abandoned my husband, but again, sometimes I feel like I am depleted of whatever I have to give.  I have also abandoned some of the people who have stopped bothering with us.  That was hard to do, but necessary for my peace of mind.  Sometimes, you just have to let people go.

All of these feelings lead to that old cycle of guilt and resentment.  There are millions of people who are going through an illness with a family member.  We have become a caretaking society…people take care of parents with Alzheimer’s, children with autism and other disabilities, cancer patients, chronically ill family members.  It’s not an unusual thing to have someone in your life that needs to be taken care of.  Someday, YOU may need to be taken care of.  Or you may be taking care of someone.  Take a moment to reach out to someone who is going through this.  Please understand that a lot of times, the person may say no to an invitation.  Keep asking anyway, because it makes a world of difference to know that someone thought of them and took the time to at least ask.  It helps people to not feel abandoned and isolated, and that goes a long way.

The Abyss

In November of 2007, the words “they found a tumor” altered the course of my husband’s life, my life, and my children’s lives.  Those words started a two year journey to find a diagnosis, followed by several years of treatment attempts, horrible illness,  multiple hospitalizations, incredible stress and strain on our family, more questions than answers, and ultimately, the realization that this wasn’t ever going away.  In fact, it would only continue to get worse…his disease is progressive and incurable.  The roller coaster of emotions never stops, but I have learned a lot about myself, the people in my life, and life with a chronically ill family member.

 

For myself, this isn’t an easy journey.  People tell me all the time that I am an incredibly strong person.  I am strong because I have no choice but to be strong.  What would my alternative be?   I can choose to give up and stop living, or I can choose to be strong, do what needs to be done for my family, and be here for my husband.  I’m strong, but not infallible. I make a choice every day to laugh, enjoy my family, find a few things for myself that I enjoy, and try not to get sucked into the abyss of never ending illness.  However, there are a lot of struggles that I endure every day that people who haven’t ever been in this situation would fail to grasp.  People who haven’t lived this may even think less of me for feeling the way I sometimes feel.  You just can’t fully understand it unless you’ve lived it.

 

There are two emotions that play a constant role in my life…guilt and resentment.  I didn’t sign up for this.  Who would?   I have a lot of days that I resent what this illness has done to me, my husband and the life together that we will likely never have.  We won’t spend our later years traveling together, or going out and doing things with friends, or staying up late having interesting discussions.  Those things are few and far between for us already.  I know this isn’t anyone’s fault, but that doesn’t make it any easier to accept.  I feel resentful of friends and family members who WILL get to do those things, or who can go on great vacations, or who express worries about money when they are making two or three times what we are struggling to live on. I am resentful when I see other couples out doing things together.  I am resentful when I see other families with healthy Dads, actively engaging in activities with their children when my children’s Dad barely has enough energy to get through a quiet day at home.

 

The usual emotion followed by resentment is a big, healthy dose of guilt.  I feel guilty for feeling resentful of the illness, and other people who have an easier life.  I feel guilty for yearning for more from life. I would never wish this on anyone.  I am happy for people who are happy with life.  But sometimes I still resent it, which makes me feel guilty.  I have a lot of things to be grateful for.  I have a husband who loves me, three amazing children who I love more than life itself, some incredible friends, incredibly supportive parents, and many family members who have always been there for us.  I get it.  I have many good things in my life, too.  But that doesn’t take away the resentment and the guilt for feeling resentful.  It is what it is, but it doesn’t make it easier to accept.  Again, for people not in my shoes, this may be hard to understand.

 

I tend to keep my feelings to myself, and withdraw from people during my darker times.  I am an introspective person, and usually prefer to solve my own issues on my own, and in my own time.  I’m sharing this not because I want anyone to solve this issue for me, or because I’m looking for sympathy.  These are my issues that I deal with every day.  They aren’t right or wrong…they just “are.”  I’m sharing this so that people can maybe understand what it’s like to live this type of life.  There are many people out there feeling isolated, misunderstood, resentful, guilty and hopeless.

 

People often ask what  they can do to help a family or person dealing with illness.  They usually mean by actively doing things…making a meal,  or helping with a task.  There are other ways you can help.  You can help emotionally by letting them know that you are there if they need you.  You can help by realizing that your every day issues are issues they would give anything to have, rather than the stress they are living with on a long term basis.  You can help by including them in things so they don’t feel isolated.  You can also help by being sincere in your interest in how someone is doing.  Don’t ask if you don’t REALLY want to be a listening ear. It is noticed when you aren’t really paying attention to what someone is telling you.  You can help by listening without trying to give advice.  Advice is nice if it’s asked for, but mostly it’s just nice to be listened to and sympathized with.  When I feel as if I’ve been really heard, it makes a world of difference.  It makes the resentment and guilt go away for a little while.  It gives me hope.