Struggle for Peace

It’s been quite some time since I’ve written my blog.  Part of the reason is that things have been pretty much status quo with Dave’s health.  There hasn’t been a significant change that has inspired me to write.  I noticed that I didn’t write a single blog post in all of 2019, and I honestly had no idea it had been that long.  As I thought about it, I realized that I just had no motivation to write.  In fact, I had no motivation to do anything.  I didn’t read books, I didn’t particularly want to go out and do things, I didn’t really want to hang out with people, I watched mindless TV, and I often didn’t feel like taking a shower.  I went to work, and sat on the couch when I wasn’t at work.  I lost interest in cooking, didn’t particularly care what my house looked like, and really didn’t want to be bothered by anyone.  Then, I changed jobs and started working at a very high stress, high anxiety workplace.  I spent my time at home doing absolutely nothing because it made the time go by slower and then it felt as if I had a longer evening or weekend.  I dreaded going to work and felt a sense of torture every morning. I decided to leave and got a fantastic job that I am now really happy with.  But when I started that job, and for several months after, I had a lot of anxiety around going to work.  I felt like I had PTSD. I would drive home from my new job, listening to my favorite music, and cry.  I had to be careful not to cry too much, because I had to see the road.  I’d start thinking about all the things I constantly have to deal with and was feeling very alone. I was always angry and always exhausted.  It finally dawned on me that I wasn’t so much tired from lack of sleep (although I wasn’t sleeping well), I was tired from a lack of peace.  I don’t know how long it had been since I felt a sense of peace…at least 12 years. I was at the point where I wasn’t suicidal and did not want to hurt myself, but if I didn’t want to be here for my kids, I would have been okay with my life being over. That was how much I craved peace. My life had gotten to the point where it was clear my needs weren’t being met, and I was at the end of my rope. I was hopeless, and felt I had nothing to look forward to. Twelve years of a spousal illness, raising 3 kids, keeping a household going, and struggling financially, led me to this point.  One December day, it suddenly occurred to me that I was in a depression.  Nobody in my life had noticed I had changed and was struggling, but in all fairness, it wasn’t clear to me up to that point.  I’m also not a person who shows or shares my feelings easily.  I don’t want to burden other people. I decided I couldn’t live that way and it was up to me to do something for myself.  I made an appointment with a psychiatric APRN and got myself on an anti-depressant.

As a spousal caregiver, you struggle with a range of emotions all the time.  You feel empathetic, helpless, resentful, bitter, sad, tired, loyal, compassionate, hopeless, guilty, and there are days you wish it was over so you could have a life. The person you committed to spending your life with is not available to share that life in the way you both had hoped on your wedding day.  Dave has been sick for half of our marriage.  The dreams and goals we had are gone.  We take a day at a time.  Simply making plans for Saturday night is a challenge.  We’ve had to leave social gatherings numerous times because he was suddenly not feeling well.  Everyone is sympathetic to him, as am I, but people don’t realize how hard it is for the other spouse.  Chronic illness is torture for the patient, but it’s torture for the spouse to have to watch someone suffer every day, year after year.  It’s hard for the healthy spouse to essentially have to give up their life to be available to the sick person.  You are torn between the needs of the person you love, and your own needs.  People tell caregivers all the time that they need to do things to take care of themselves.  While that is true, it’s much easier said than done.  You just don’t get it if you aren’t in our shoes.

There are some people in my life who ask me what they can do to help me.  I usually say I don’t know, because I don’t.  Plus, I don’t want to burden anyone or put anyone out.  As I’ve gone through these dark few months, I realized that the biggest thing anyone can do to help a caregiver is to make it okay to share what is REALLY going on with them, the good, the bad and the ugly.  If you ask how they’re doing, make eye contact, really listen, and make them feel safe and especially not judged for how they feel.  Believe me, we judge ourselves more than anyone else does.  Although we are doing a good thing, we criticize ourselves for every negative feeling or thought we have.  We kill ourselves to make things okay for our families.  We do it out of love, and we know it’s hugely important.  We wouldn’t want anyone else to do what we are doing.

I’ve been on medication now for 4 months and it’s made a huge difference for me.  I still struggle at times with anxiety, and there are days that I still feel down.  But the hopeless feeling is gone, and I’m a little more positive that maybe someday life will be easier, and more enjoyable. If I didn’t have that hope, I could never get through this.  This quarantine that came out of the blue has been a serious blessing for me.  I’ve had time to read and do things, or just not do anything if I’m feeling lazy.  It’s been nice not to have to go anywhere or do anything.  I’ve finally felt the peace that I’ve been missing for so long.

A Sliver of Light

Sometimes, when the darkness comes and you feel your world crumbling down around you, a sliver of light makes its way through the cracks of your life.  The past month has been a huge struggle for me and my husband.  Not only has he seemed to have gotten noticeably worse, but financial burdens have become overwhelming, our kids have had some personal struggles, and the pressure to remain strong and keep life “normal” for everyone has become harder for me.  Then, on May 18th, my husband was brought to the ER by ambulance once again.  He had been vomiting on and off for days, thought he was better, and then started all over again.  We thought he was septic again.  This was not a new thing for us…we had been down this road several times before.

But, this time was different.  He went to his usual hospital, where they knew him and his history.  They discovered he wasn’t septic, but possibly had a blocked intestine from his tumor growing and squeezing it shut.  A doctor came into the room and said that she felt he would be better off going a few blocks away to Smilow Cancer Hospital.  She felt he would be able to get tests over the weekend, and that there may be doctors there with more expertise.  So, we agreed and he was transferred.  It was one of the best decisions we’ve ever made regarding his treatment in the last 11 years.  It changed the trajectory of his treatment and gave us some hope we haven’t had in years.

Dave stayed in the hospital for 5 days, and came out looking and feeling like his old self.  The difference?  He had a different doctor who decided that since his disease is essentially an overproduction of inflammation (in a very basic nutshell), that they should put him on steroids and see how he does.  The result was nothing short of amazing.  He felt better physically with less pain, and his head cleared and he was able to think more clearly.  He was more awake.  They released him on Tuesday, with a referral to a doctor who specializes in rare diseases.  That doctor happened to be in the SAME practice as the doctor he has been seeing for the past 5 or 6 years.  We have no idea why we were never told about him.

Last week, he had his first appointment with the new doctor and he has given us more hope in one visit than the other doctor has ever given us.  The new doctor is already treating another patient with Erdheim-Chester Disease in the same practice.  He studied under a doctor at Sloan-Kettering and a doctor in Boston who both have experience in treating ECD.  He started my husband on a new medication, has a brand new plan for him, including monthly visits, scans, and testing for a gene mutation that could change the course of his treatment in a positive way.  The hospital also gave him other resources to help him and the family.  In 11 years, we never knew any of this existed.  One trip to the hospital, for what we thought was just another hospital stay with some sort of infection, turned out to be a blessing in disguise.  We had the right doctor at the first hospital who questioned his lack of current treatment, who sent him to a specialty hospital, who had the right doctor on staff to lead us to a completely different doctor with a much better plan.

Life is still a struggle, and the illness will always be there.  We’ve watched as my husband slowly deteriorates, not knowing what to do or where to go.  Just when you feel as if life has kicked you so hard that you don’t want to get back up, the right people, in the right place, at the right time, enter your life.  And everything changes.  We don’t know yet what the outcome of all of this will ultimately be, but we feel hopeful for the first time in a long time.  Sometimes, that’s all you need to get you through.

When The Caregiver Gets Sick

On Tuesday, November 14, 2017, I heard the words “You have breast cancer.”  I knew the words were coming.  Somehow, I just knew. I had had a routine mammogram the week before..a week and a half after I had noticed a lump.  A lump that my doctor had NOT noticed 3 weeks before. Within 2 days, I had a biopsy and I could tell by the atmosphere in the room that they thought it was suspicious.  They’ve seen enough malignant lumps to know one when they see one.  So, I wasn’t surprised, but I WAS shocked.  How the hell is this happening to ME?  Haven’t we been through enough?  I’ve been taking care of a husband with a rare disease for 10 years, who 7 years ago had a motorcycle accident and broke 10 bones, in addition to raising 3 children, running a household, and working full time. In between the major crises, we had so many mini-crises that I’ve lost count…sepsis more than once, dead cars, financial crises, a daughter with a ruptured appendix, broken appliances, more car issues, and now my own cancer diagnosis.  And did I mention my car just died last weekend?

I’ve seen a lot of statistics over the years about how caregiving can impact the health of the caregiver.  Logically, it can have a huge impact on depression rates, but it can also impact the physical health of caregivers.  We are told all the time to “take care of ourselves,” and “take time to pamper yourself.”  As caregivers, I think we can all agree that is much easier said than done. I mean, when exactly are we supposed to do that? We go into auto-drive and we do what we have to do.  We think about the people we take care of…the sick, our children, our jobs and responsibilities, and our finances. The last thing we think about is ourselves.

I’ve seen the statistics and I’ve always thought that it will never happen to me.  I’ve always told myself “I’m strong, I do what I have to do, it’s just our life now, I take care of myself by eating pretty well, I won’t let this get me sick, etc.”  I pride myself on having a positive attitude, a great (and frequently twisted) sense of humor, and my incredible resilience.  I have handled everything that’s been thrown at me.  I just put my head down and forge ahead and I do what has to be done.  I think that’s the common thread with caregivers.  Unfortunately, sometimes life catches up with you and says, “Hey, since you won’t give yourself a break, I’m going to force you to have one.”  I certainly don’t think of this as getting a break, but I do have several weeks to recuperate from surgery so I get a little bit of a rest.  The next treatment is up in the air at this point.  Chemo may be in my future, maybe not. I do just look at my cancer as yet another bump in the road. It’s just one more hurdle to get over.  I was lucky my cancer was found relatively early and my prognosis is great.

I’m not sure if I’m being super positive, if I’m in denial, or if I’ve finally lost what’s left of my marbles, but this isn’t going to get me down.  I have too much to do in life and I have people relying on me.  I’m going to kick cancer’s butt, and I’m going to look good doing it with my cute, perky new rack, and even a bald head if I have to.  I just do what needs to be done, and I will always try to do it with a smile on my face.

 

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.

 

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.

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.