Archives

I See You

A few weeks ago, I was at the beach and I saw a young woman walking with her two little boys and her husband.  Her husband was disabled, walking with a cane and appearing to have lost some muscle function in his arms and legs.  I keep thinking about the woman and what I would have said to her at the right time, in the right place.  This blog post is for that woman, and the other young people who are caring for an ill or disabled spouse, while raising a family.

To The Woman on the Beach:

I see you.

I see you enjoying a day in the sun with your family.

I see you including your husband, who is clearly finding it a challenge to walk in the sand.

I see you take his hand, silently letting him know you are there for him.

I see your little boys, enjoying the sand, seashells and surf like all little boys would at the beach, happily oblivious to what you and he are going through.

I see you trying to make life as normal as you can…for your boys and for your husband.

I see you putting on a happy face, even when you aren’t happy.

I see your concern for the man you love.

I see your heartache and your heartbreak…watching the man you love suffer, wondering what your future will be like, wondering if you will someday be alone.

I see your worry…worry for your husband and his future, worry for your boys and their future, worry for yourself and your future.

I see your exhaustion.

I see your resentment and your guilt.

I see your loyalty.

I see your commitment.

I see you lying in bed in the wee hours of the night, waiting for the darkness to pass and the light to return.

I see your sadness.

I see you taking one step after another, walking through the storm, hoping that someday there might be sun again.

I see you trying to find happiness wherever you can.

I see you being grateful for all the little things.

I see you wishing for things you may never have.

I see you laughing.

I see your tears, cried silently when you are alone.

I see your appreciation for the moments you have together.

I see you taking care of everyone’s every day needs, while putting your own aside.

I see you wishing you could have time to yourself.

I see you keep going even when you think you can’t.

I saw you on the beach that day.  I saw you, and I want you to know, I understand.

 

Advertisements

Exhaustion

Exhaustion.  It can hit out of the blue.  You think you’re doing well and handling everything, and you have a hopeful outlook.  It’s not always physical exhaustion.  It can be mental or emotional exhaustion.  But, mental or emotional exhaustion definitely adds to the physical exhaustion.  That’s where I am this week.  I’m mentally exhausted.  I’m tired of struggling all the time.  I struggle with a busy schedule…work, managing a household, taking care of kids, being available to my husband for his dialysis or any other medical needs he has.  I struggle with worry EVERY SINGLE MONTH on how I’m going to pay everything and still be able to buy a little extra, or do something fun, or be able to pay for something my kids need or want.

Home dialysis was supposed to make things easier for “us.”  They told us the machine is the size of a suitcase, and we can take it anywhere, even on vacation.  They didn’t tell us we would need to lug 5 large bags of fluid for each day of dialysis (25 bags for a week), saline IV bags, and a gazillion medical supplies with us. They told us you do dialysis more frequently, but for less time.  We do dialysis 5 nights a week for 2 1/2 to 3 hours once he is actually hooked up and dialyzing.  It doesn’t include set-up time and clean-up time.  It ends up more like 5 hours a night.  That’s a lot.  They said he can do it on his own, but it turns out, he has to have someone here with him to help him hook up and unhook, or be here in case of an emergency.  It’s not easier at all.  It’s harder.

I’m so tired of worrying about money.  I get the summers off, but I end up a stressed out wreck because I don’t get paid when I don’t work.  I’ve been applying for other full time jobs that are year round, even though it will mean I will have to leave a job of 9 years that I love.  I considered finding something part time that I could do during the school year to supplement my income, and pick up hours in the summer to maybe enjoy them without worrying.  But, because of dialysis 5 nights a week, I don’t know how it’s possible to work part time during the school year, after work.  There just isn’t enough time in the week.

I’m tired of saying no to things that are important to my kids because I can’t afford them or I don’t have the time or ability to be both at home, and out.  People will say, “you don’t have to give them everything they ask for.”  My answer to that is that they don’t ask for much, and when they do ask, it’s very important to them, or it’s a life event that they shouldn’t have to miss.  I hate that there are times they have to miss out because I’m not available or can’t afford something.  I hate struggling to figure out where the extra money is going to come from.  I hate that I am the only one who worries about it.  It really sucks to keep disappointing your child, when you know you are struggling yourself to accept all of this.

I’m tired of having to keep it all to myself because the person that I’ve always figured this stuff out with is sick.  He’s sleepy, he’s medicated, his brain is often foggy.  And there isn’t much he can do.  He is exhausted, too.  His body is failing him, he’s in constant pain, he’s sleep deprived, he’s forgetful.  He doesn’t have a solution to any of this.  I’m tired of handling it all alone.  I have to always keep him and his illness in mind, otherwise I would be overcome by resentment and hopelessness.  I keep him in mind because he has enough to worry about.   He didn’t ask for this any more than I did.  He has it worse.  My exhaustion is nothing compared to his.

This exhaustion has come and gone many times in the last 9 years since he got sick.  We always rally, we always make it through, we always survive.  It’s a matter of plugging along and pushing through.  We have no other choice.

When Is Enough, Enough?

I walked in the door at 7:30 tonight after being out since 8:15 this morning.  My day consisted of working with kindergarteners for 7 hours, picking my daughter up from track practice, driving 40 minutes to her voice lesson and 40 minutes home, and a stop for Chinese food.  I blew off a meeting because I had to get home at a decent hour to help my husband, and I was tired.  Like almost every night, I was greeted by dishes in the sink, dirty floors, dusty pet hair covered surfaces, laundry piled on the couch, laundry in the bathroom, laundry in the laundry room.  Did I mention there was laundry?  The bathroom is a mess, even though I clean it at least once, if not twice, a week.  There is also the usual clutter of a lived-in household.

I blew off cooking dinner tonight because if I had to make a meal, we would have been eating at 9 p.m.  Did I mention I was tired?  So, take-out it was.  Again.  I was out of the house and on the go for almost 12 hours today and had no desire to cook.  As I sat and ate my Chinese food , I looked around and started criticizing myself for my obvious incompetence in running a household.  What kind of wife and mother lets her home look like this?  How dare I have this amount of laundry all over?  How dare I allow my floors to look like crap all the time?  It’s incredibly embarrassing every single time someone walks into our home.  I wonder what they must think of me.  I don’t like it when people come over.  They probably think I’m lazy.  There is no excuse to not keep up with it all. Even though I try to clean it every week, it never looks the way I like it, let alone the way guests would expect to see it.  It looks good for a day at most, and then it’s a mess again.  I don’t have time to make it look incredible, or even presentable most of the time.

I look forward to weekends, but then I spend them grocery shopping, cleaning what I can, driving kids around, and hopefully catching up on some of the sleep I inevitably missed during the week.  It’s a rare weekend that I get to do something just for the fun of it.  Sitting and reading a book can be a challenge.  I figure I don’t deserve it anyway, because I can’t even get my simple chores done.

I’ve also been trying to find a part time job to supplement my income during the school year, and be able to work in the summer when I don’t get paid from my regular job.  I can make it work.  I can work a couple of evenings, and maybe one weekend day, while holding my full time job.  I mean, it’ll take some of the stress off, right?  I can do this.  No excuses.

Meanwhile, my husband sat in his recliner.  No, he isn’t lazy.  Far from it.  He was hooked up to the dialysis machine that keeps him alive.  He does this 5 nights a week for several hours.  He can’t be alone when he is hooked up to the machine.  I have to be here with him, or another adult has to be with him, in case something happens or he needs something.  I figure that should give me the time to clean, do laundry, and cook, since I’m home anyway, right?  No excuses.  There is no excuse.  There is no reason that I shouldn’t be getting everything done every night.

These are the things I say to myself all the time.  Then tonight, as I sat here,  I heard that sound a record makes when the needle scratches it.  You know the sound, if you are old enough.  Now, I didn’t really hear that sound…it was in my head.  But I noticed the negative chatter in my head and stopped myself.  What is wrong with me?  I never stop, and yet it still isn’t good enough for me.  The house isn’t clean enough, I don’t cook enough, I don’t keep up with the laundry, I’m not giving enough time/money/attention/experiences to my kids, I’m not giving enough time/attention to my husband, I’m not making enough money, so I can’t provide enough.  I also tear myself apart because of what other people might think.  They’ll think I’m lazy, or dirty, or simply not good enough.  I make it seem like I can handle it all just fine, but I really can’t.  Why is that not okay?

Honestly, I don’t know how to fix it all.  I’m trying to accept that this is my life for now.  My house will be messy, the laundry won’t be completely done, we will eat take out more than we should, and if other people come over, they will have to tolerate the mess.  People will always judge what they haven’t lived.  I’m judging it, and I live it.  I’m just trying to get myself to the point where I can say “enough is enough,” and be okay with just doing the best I can for now.

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.

View original post 380 more words

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 http://www.alsa.org/.  In the meantime, if you are nominated to do the ice bucket challenge, buck up, buttercup, and just do it!