Tag Archive | caregiver

Adjustments

It’s been almost 8 years since my husband’s disease was discovered.  It’s been a long 8 years, full of learning experiences I never thought we would ever have to endure.   I’ve learned how very possible it is to get through every day life, struggling with exhaustion, or finances, or lack of time, or situations out of our control.  I know what it’s like to continually take one step forward and two steps back.  I know what it’s like to make sure my kids have a good childhood, with interesting experiences, unique opportunities, and the chance to become the people their souls are meant to become, all while living with a fathers’ illness that invades every part of our lives.  Life has been an ongoing struggle between dealing with a sick spouse, the loneliness of losing people in our lives who can’t deal with it, grieving the loss of our dreams, and living every day life, raising kids, enjoying what we can, and just keeping on going whether it’s an easy day or a hard day.

The hardest lesson has probably been acceptance of how this disease has changed our marriage.  Eight years of spousal illness takes a rough toll on a marriage.  Both of us are dedicated to each other until the end.  There is no question of that.  We love each other and we are both loyal to each other.  But life has changed for us.  My husband sleeps all the time.  When he is awake, he has no energy, or he has energy for short amounts of time.  He is on so many medications that he is often in a zone and not really hearing what I’m saying, nor responding to me.  He is in pain almost all the time.  It never goes away completely.  For all the exhaustion he has, he never sleeps well because he can’t get comfortable.  It’s really hard to watch your husband suffer every single day.  I get tired of it all. Sometimes, I just want to get out of the house so I don’t have to look at him like that.  There are days I want to scream out of frustration…frustration that he isn’t talking to me or listening to me, frustration that he can’t do much to help me out, frustration that it will never get better.  It’ll only get worse.  We likely won’t grow old together, and get to do the things we used to talk about doing when we retired.

There have been many times that I felt alone with all these frustrations, grieving the loss of a marriage that won’t be what we had hoped.  But, he deals every day with illness.  He never feels good, he is always wiped out and exhausted, he is bored being home alone all day while we are at work or school.  He wants to be included when we go out and do things, even though he doesn’t always have the stamina to keep up, and often wants to come home early.  There are times I need to get out of the house and away from the disease, so I don’t ask him to go.  I want to go out, and not have to worry about whether he is tired or in pain and needing to leave early.  We recently had a conversation in which he told me that it makes him sad when we do things and don’t invite him.  Honestly, I hadn’t really thought about it…I needed to get out, and I figured he wouldn’t want to go because he’s sick and can hardly stay awake.  I didn’t always think about asking him.

It made me realize how important the little things are when you are in this situation.  We can’t easily do the big things any more.  I don’t remember the last time we had a date night, or went away for a weekend, or did something fun together. Now, I’m happy when we have a ten minute conversation and he is awake and paying attention.  I’m really happy when he acknowledges the things I do around the house, or the little things I do to help him out, or when he brings me a candy bar just because I know he was thinking of me.  He is happy if I go to Walmart with him, or ask him if he wants to go with us somewhere, or if we pick up sandwiches and eat lunch together.

Life with a sick spouse is all about adjustments.  If you can’t adjust to a situation, you’ll never make it.  A simple shift in the mind can make all the difference in how peaceful your life is.  We have made small changes in order to make life a little easier for each other.  There will be more challenges and crises down the road, but if we do what we can for each other along the way, even little things, those challenges will be that much easier.

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Teachable Moments

When my husband’s tumor was first discovered, our children were only ages 9, 7, and 5.  They were really too young to be kept in the loop about what was happening, and we went out of our way to hide it all.  They were too young to hear about doctors, illness, tests, and an unknown prognosis.  We spent two years not knowing anything, so it would have been  impossible to explain to them what we didn’t understand.  Once we started getting answers, the reality of what could be coming wasn’t something we felt they needed to know or worry about.  We wanted them to just be children, with no adult worries, and we wanted to keep their lives as “normal” as possible.  It worked for a while.

Now, our children are ages 16, 14 and 12.  There really is no more hiding, and it wouldn’t be fair to be less than honest with them.   They know Dad is sick.  They see it every day.  We don’t make a point of talking about his illness, but we answer honestly now, when they have questions.  That is a hard transition to make.  As parents, we want to protect our kids from the difficult parts of life.  Nobody wants their kids to grow up with a sick parent, constant financial struggle, and an inability to know what can be expected in the future.  Under the best of circumstances, none of us can predict what the future will hold.  But with an illness, it’s even harder.  Life is lived on a day to day basis.  Plans are hard to make.  Promises are almost impossible.

For a long time, I felt guilty that our kids were dealt this hand…living in a family with a chronic illness that hangs over us every single day.  I felt it was unfair to my husband, and myself, but especially to our children.  I had an amazing, happy, care free childhood, and it hurt my heart to know that my kids wouldn’t have the same experience.  I’ve always wondered how this experience would affect the rest of their lives.  Would they grow up feeling cheated, or insecure, depressed, or anxiety ridden?

As our kids grow older, I find myself looking at our situation in a different way.  I’ve accepted that this is how things are and there is nothing we can do about it.  We can fight it and wish it were different.  That doesn’t work…I’ve tried it.  We can let it consume us and ruin our lives.  For me, that has never been an option and I wouldn’t allow my kids to let it affect them that way either.  Now, I try to look at it another way…a way that will hopefully help my kids.  My kids are, and always have been, watching me and how I respond to my husband, his illness, and our life as a family.  I hope that they have learned that spouses are loyal, through sickness and health.  I hope they have seen that life can be brutally hard and not go as planned, but that you simply don’t give up.   I hope they have learned that sometimes, you just have to put your head down and plow through the tough times, and that eventually you WILL come out the other side.

Now that our kids are more aware of what is happening,  they are asking me more questions, and talking to me about their feelings…whether positive or negative.  It’s my opportunity to continue to teach.  The most common feeling they have mentioned is frustration.  They get frustrated that their Dad sleeps a lot, and spends a lot of time just sitting and watching TV, or wandering aimlessly around the house, not doing much of anything.   They get frustrated when they see that he eats and drinks unhealthy food.  They get frustrated that he is often too tired to do something with them, or drive them somewhere.  They get frustrated when he won’t wear a seatbelt.  I completely understand their frustration, but I take those conversations as the opportunity to sympathize with them and to teach them that we can only control ourselves, not other people.  My kids tell me they don’t like to talk about it (as they are talking about it), and it gives me the chance to tell them that talking about it relieves them of the burden of holding it in.  I encourage them to talk about their anger and frustration because I know it helps to let go of it and share it with someone else.  I tell them it will eat them up to hold it in if they are sad, angry, or upset about something.  They tell me they want to spend more time with their Dad, but don’t know what to do with him.  I tell them to tell him that they want to spend time with him…it will make him feel good, and they will always remember the times they spent together.   Communication is important, and they should always tell him when they want to be with him.

As life evolves, and the years go by in our household, there will always be teachable moments that I hope will help my kids throughout their lives.  I could live with a heavy heart, wishing that life for my kids was different.  Or, I can share my experience with them in the hopes that they can move forward through their lives with a little bit of wisdom, and a foundation for dealing with the hard blows life can throw at them.

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.