Tag Archive | illness

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.

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.

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.

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.