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.

For Now I Won’t Be A Loser

I recently entered a “Biggest Loser” contest at work.  The way it works is that the person who loses the highest percentage of weight by April 9th will win the title of Biggest Loser, as well as a monetary reward.  I thought this would be good motivation because not only can I use the money, but a weekly weigh-in is required and I figured that if someone will be seeing my weight every week, I am going to make damn sure it goes down consistently.  It is now 3 or 4 weeks later, and I haven’t lost a blessed pound.  The only reason for this is that I haven’t even tried to lose weight.   Well, I tried on some days and not on others.  I didn’t really try to resist the temptation to eat something I wanted, but shouldn’t have. I finally realized that I wasn’t in the right frame of mind to try to diet.  It’s not that I don’t WANT to.  It’s that I just can’t do it right now.  So, I felt like kind of a jerk about it.  I let the group down, and I let myself down.  I want to be thin, and look great in my clothes, and have people look at me and see a 47 year old, thin, fit, and healthy woman.  But I’m not ready to do the work yet.  And after really thinking about it, I wondered why the hell I should be feeling guilty about it.

I am not in a place in life right now where I feel I can take on a personal goal and be successful at it.  I have more on my plate than the average person.  I have a sick husband who has failing kidneys, and is on so much medication, that he spends his days sleeping, or severely lacking the energy to do much of anything.  My weekdays start at 6 a.m. when I get up to make sure my kids are up for school, and to get myself ready to go to work.  I’m in work by 8:30 and spend my days with 5 year olds.  I am home by 4, at which time I have to make any phone calls that need to be made (if I remember to make them), run any errands, shop for and/or make dinner, help with homework, make sure there is some clean laundry for the next day, straighten up any messes (usually half assedly because I am out of energy by dinner), run any errands that didn’t get done before dinner, have at least a little conversation with my kids, and get ready for the next day.  That is all I do on a good day.

In addition to my full time job, I just took on a part time “small business” that I’m trying to get up and running so I can make some “extra” money.  So my evenings also now involve answering emails and FB messages, learning about the company and the product, and promoting my business.  Soon, there will be evenings that I will be out at parties, selling my product.  Then there are the evenings that my kids have appointments or activities that I need to get them to.  Friday nights are often spent taxiing kids to friends’ houses or to meet them at the movies or ice skating, or even at the occasional concert.

The weekends aren’t much quieter.  They are spent trying to motivate myself to get up and clean the pig sty that is my home.  After a full week of working and running around, it’s all I can do to dust, vacuum, clean the toilet, straighten the mess, and catch up on laundry.  I never catch up on laundry.  My house always feels dirty and messy, even if I clean.  I feel guilty about that, too.  I wonder what kind of wife and mother I am that I can’t keep a neat, clean home, have dinner on the table every night a la June Cleaver, and have everyone’s clothes cleaned, pressed and put away.  I try to do it all.  But my weekends are also spent carting my kids around, or out and about getting things for them for school, or things for the household for the following week.  At some point, I have to get to the godforsaken grocery store…a place I’ve come to detest.  I’m tired all the time.  This isn’t how I want to spend my weekends.

Recently, I thought about all that I do.  When I list everything like I did in this blog post, I realize I do A LOT.  And I do it pretty much on my own.  My husband and kids will help out a little, but the majority is all on me.  Why is it that I always feel like I’m not doing enough?  Why do I feel guilty that I’m not a perfect housekeeper, or a perfect cook, or a perfect wife and mother?  Why do I never feel good enough?  Why do I always feel like I should be doing more?  I compare myself to other women who have neat, clean homes, or who go to the gym and look perfect in their jeans, or who cook a hot meal every single night rather than order take out.  It’s not just me.  I think A LOT of women feel the same way.  Why do we do it to ourselves?  I don’t know the answer to that question.  But at this point, I’m allowing myself to be okay with not trying to lose weight.  I just can’t put that on myself right now.  I need to let something go for now, and so I’ve decided to let the guilt go of not trying to lose weight and being the perfect size 10.  I’m going to be okay sitting in my dusty living room, eating my chocolate chip cookies.  Just for now.

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.

There Really Are Angels Among Us

The Imperfect Caregiver

caregiving angels

When I first saw this picture I was reminded of a day when angels made their presence known to me. There had been an ice storm and Rodger was in the hospital again. Unable to get there so see him for a few days I was worried about him and how he would react upon seeing me. Although he often said he didn’t mind being in the hospital, he always resented it and acted out when he got home. I was becoming overwhelmed and prayed often asking God to send help. I prayed again as I drove the winding road over the mountain into West Virginia to the VA hospital.

The following is an excerpt from chapter 25 of  my book Confessions of an Imperfect Caregiver, the true story of my time as an imperfect caregiver.

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Beyond The Cover

You can’t judge a book by its cover.  How many times have we heard that phrase?  We know what it means…you can’t judge something based on its appearance.  Yet, it’s human nature to do exactly that.  How many times have we seen a dirty, homeless person on the street, and thought to ourselves how lazy they are, or perhaps mentally ill, or just plain losers?  How many times have we looked at someone of a different race and made assumptions about them based on stereotypes?

A little over a year ago, we were on vacation in Sunset Beach, North Carolina.  My daughter, Hannah, was 14 at the time and had brought a friend with her for the week.  One day, they decided to walk down to a group of gift shops because her friend wanted to buy her younger siblings some souvenirs.  As they walked through the store, the owner followed them around, and then finally kicked them out and told them not to come back.  Both girls were shocked because they had been doing nothing but looking around.  They weren’t bothering anyone, or acting suspicious, or trying to steal.   What were they guilty of?

Both girls were teenagers.  Both were wearing black, perhaps one or both of them had a skull somewhere on their clothes.  Both of them had numerous piercings in their ears, and Hannah’s friend had gauges that enlarge the earlobe.  They may have been wearing black eyeliner.  Did the woman feel threatened by them because of their appearance?  Did she judge them as shoplifters because they looked different?  That’s a shame if that’s what she did.  Not only did she lose a sale that day, but she also made two nice, honest  girls feel offended by her actions.  They felt what it was like to be stereotyped and judged, based on their appearance.  Both of them were upset and didn’t understand why they were being judged when they weren’t doing anything wrong in the store.  I explained to both of them that the woman likely judged them by their appearance, and even though I know, and they know, that they are good girls, the woman saw only their style, and reacted based on that.

Hannah is now 16, and she wants to get her nose pierced…a small stud on the side of her nose.  I have always told her that I wouldn’t allow her to pierce her face, but I am allowing this small piercing.  Why?  Because I think it looks pretty.  All of her piercings have small holes so that they can be removed when she wants, and they won’t leave large holes in her body.  Hannah wants to go to nursing school, and eventually she will be going to interviews for jobs.  She has seen first-hand how appearance affects people’s opinions.  She understands that it’s okay to have your own personal style, but that there are times that you may have to tone it down in order to get to where you want to be.

There are some people that have told Hannah that it’s “wrong” to have piercings, or that the way she dresses is wrong.  She’s been told by family members that she is ruining the body that “God gave her.”  She has been made to feel bad for what she likes as her own personal style.  She has been judged based only on that style.  She has been given gift cards for her birthday in past years for places like Aeropostale, or Hollister by people who think the preppy look is the “right” look.  Isn’t that a not-so-subtle way of telling her that her appearance is wrong? I think that a lot of us look at the people close to us, and feel that their appearance reflects on us.  If she is wearing black and has her nose pierced, what does that say about me?  It says nothing.  It’s not about the rest of us.

People overlook her amazing qualities, and allow her appearance to overshadow them.  Hannah is a person who is open minded, doesn’t judge others, and is quick to speak up when she feels someone else is being judgmental.  She has no tolerance for intolerance.  She is loving, and caring, and wants to spend her life caring for the sick.  Yesterday, Hannah and two of her friends saw a large amount of garbage left in the woods near our house.  They filled three garbage bags with someone else’s trash, brought it home, and put it in our garbage pails.  Are those the actions of a person that deserves to be told she is ruining what God gave her, or to be kicked out of a gift shop for doing nothing but shopping?

Never judge a book by its cover.  Hannah’s cover is beautiful, regardless of a few holes, or the black clothing it wears.  Her cover encases a beautiful soul that shines wherever she goes.  Don’t miss the soul because of the cover.  Wherever you go, take a moment to look beyond the cover, and see the soul inside.  THAT is what counts.

The Ice Bucket Challenge

As almost anyone who lives in the free world is aware by now, there has been a viral campaign going asking people to either dump ice water on their heads or make a $100 donation to ALS (Amyotrophic lateral sclerosis).  ALS is also known as Lou Gehrig’s disease.  I’ve watched as friend after friend on Facebook has been nominated, and videotaped themselves making a little speech, and then dumped ice water over themselves.  Honestly, I was starting to feel relieved that nobody had nominated ME for two reasons.  One, I don’t have $100 to donate to anyone, and two, dumping ice water over myself sounds like some version of self-torture.  I hate being cold.  I don’t even like to drink ice water.

But then it happened.  My dear sister-in-law, Julie, nominated me in her video.  That was an instant of sheer dread that I haven’t felt since, well, I don’t when.  I started thinking of excuses as to why I couldn’t do it.  I considered donating money I didn’t have.  Then my heart took over and I realized that the ten seconds it would take for me to pour ice water over my head, was a much shorter time to suffer, than the patients with ALS have to suffer.  I decided that not only would I do the ice bucket challenge, but I would also make a donation within my means to ALS.

Once I made the decision to participate, the next order of business was to plan my wardrobe, makeup, and hair for the big event.  I don’t normally post videos of myself on the internet.  In fact, this would be the first time.  People who are my friends through the internet only, would hear my voice and see me live for the first time.  I went with black pants for the slimming factor, which honestly didn’t matter much.  Bare feet sounded good because I hate walking around on wet flip flops, and I have a tendency to slip ungracefully on them.  I couldn’t have that happen, although I’m sure it would have made my video much more entertaining.  I actually showered, and did my hair and makeup before the dumping.  I know.  That was really vain and stupid.  But whatever.  The ALS was getting their money and some awareness, so if I wanted to look decent, then call me vain.  I don’t care.  It doesn’t matter that the video quality was so poor that I could have done it with bed head and yesterday’s makeup running down my face and nobody would have seen it.

The time came to suck it up, prepare the ice water, and do the challenge.  I practiced in front of the camera first, to make sure the angles were good, ie. a “thinner angle.”  I wanted to practice my speech, so I didn’t sound like a bumbling fool.  It took a few tries because my son was standing next to my cameraman daughter, making faces and pretending to laugh at everything I said.  His support is always a blessing. All he had to do was look at me a certain way and I would start laughing.  He kindly offered to pour the water for me, but I passed on that offer as I knew he would inevitably throw it in my face, rather than allow it to prettily run down my svelte body in a “supermodel standing under a waterfall” way.

After a few practice tries came the real thing.  It’s very easy to hesitate indefinitely before pouring ice water over your head, so I told myself I would just do it without thinking about it.  I made my speech to the camera, nominated my unsuspecting friends and family, and dumped the ice water.  Holy shit, was it cold.  The shock to my system didn’t wear off until hours later.  I think I had frostbite down my neck and back.  My kids laughed…a lot.  It was okay because every good comedy needs its own laugh track.  My kids were happy to oblige.  They’re sweet like that.

So, it was over.  Done.  It really was easy, and kind of fun, all for a great cause.  If you get nominated by one of your loving, considerate friends, please seriously consider doing both the ice bucket challenge AND making a donation.  The ice water is to spread awareness…asking for donations wouldn’t have the same impact if it was just some person standing there asking for it.  It also gives your friends and family the sick pleasure of watching you torture yourself.  In my opinion, simply dumping ice water doesn’t excuse people from making a donation.  I think it’s important to spread the awareness as well as make a donation, even if it’s just a small one.  Every little bit helps.

If you are interested in learning more about ALS or in making a donation, please visit  In the meantime, if you are nominated to do the ice bucket challenge, buck up, buttercup, and just do it!

Out Of The Ashes

Living in a household affected by chronic illness is challenging, stressful, frustrating, and sometimes next to impossible.  It often feels like a jail sentence from which there is no escape.  But over the past almost seven years, my family has experienced amazing acts of kindness that we may not have seen if all had been well in our world.

In October of 2010, my husband wound up in the hospital with a failing kidney.  It was decided that he needed a nephrostomy tube placed through his back and into his kidney to allow it to drain properly.  His tumor had occluded his ureter and his kidney was swollen.  It was the only thing they could do to save his kidney function on that side.  We didn’t know it at the time, but that was the turning point for his disease and we had yet to feel the full impact on our family.  Meanwhile, I had a hip resurfacing surgery scheduled for early November that year, and we decided I should keep the surgery date and get it done before he was any sicker and I couldn’t take the time to do it.  I had surgery, and a few weeks later, my hip fractured, and I had to return to surgery for a total hip replacement.  My second surgery was 10 days before Christmas, and my sick time had run out.  Neither of us had any income coming in.  With three young kids, and no income, the stress of Christmas was the highest it had ever been.

One day, a letter came in the mail, addressed to me.  I opened it and found $500 with a note saying that it was so my children could have a nice Christmas.  It was signed, “Santa.”  I felt the tension release from my shoulders immediately, and was so excited that I could buy them presents to put under the tree.  A week or so after that, we found a gift basket full of cheese, crackers, snacks, and assorted other goodies, left inside our back door.  There was no note and we had no idea who had left it for us.  We put it under the tree to save for another day.  We decided to open it a few days before Christmas.  At the bottom of the basket was a green gift box.  I opened the box and found $800 in cash.  To this day, we don’t know who left those for us.  But whoever it was, they were our Christmas angels that year, and we will be forever grateful for their kindness and generosity.  That was the most stressful two months of our lives.  Our world had completely fallen apart, and yet out of the ashes came hope, love, and incredibly kind gestures that made all the difference to us that Christmas.

Over the years since my husband got sick, we have been the recipients of numerous kindnesses from many people.  Our friend celebrated her 40th birthday, and asked all of her friends and family to donate money to help us, in lieu of gifts for herself.  Our parents have helped us out numerous times when we were in a bind.  They have paid our mortgage at times, bought us heating oil, bought us appliances when ours had broken, and my awesome uncle even gave me a car when mine had died.  Friends gave us money this past Christmas and we were able to buy heating oil and pay some bills.  My parents treated us to a Disney vacation,  have taken us on vacation to the beach in North Carolina, and my husband’s parents treated us this summer to a vacation in Vermont.  The list goes on and on.  People have made us dinners, and taken our kids to do things, and helped with projects around the house.  Every gesture of kindness has been very much appreciated and drastically reduced our stress during those tough times.

Families dealing with chronic illness tend to get caught up in the day to day stress of trying to keep their lives as normal as possible, even though their lives are anything but normal.  It helps to take a step back sometimes and look at the good that has come out of a tragic situation.  We have had friends come into our lives who have provided companionship, laughter, and time away from “the disease.”  Anonymous people have come through to help us when we needed it most.  We all have a choice to get lost in the rubble, or to stand up and see the beauty that can come from the same mess. We were dealt a crappy hand, but because of that hand, we have also been given the profound gift of friendship, love and generosity.  THAT is the true gift.