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.
Read more on Renee’s blog.
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.
Read more on Renee’s blog.
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.
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.
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 as a spouse caregiver. 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.
In November of 2007, I returned to the workforce after staying home with my three kids for ten years. My youngest child was in Kindergarten, and I needed something beyond the mommy and household stuff. I also wanted to start contributing financially. We had decided to sacrifice lots of things, especially money and the “extras” it can buy, so I could be home with our kids. It was extremely important to us. Two weeks after I returned to work, my husband’s tumor was discovered. In addition to the toll on my husband’s health and the incredible stress it placed on the family emotionally, it began to destroy any hopes we had of financial freedom. Over the past almost 7 years, any hope of financial freedom is gone, and has been replaced with the dream of just being able to be comfortable every month. By comfortable, I mean that the mortgage and monthly bills are paid, we have enough food on the table, and perhaps we can do a few fun things during the month. Our hopes of providing college educations to our children, or going on great vacations, or giving our daughters big, beautiful weddings are gone. I don’t know if I will ever be able to retire.
We are in survival mode and have been every single month since my husband stopped working in October of 2009. It’s a way of life for us. It is possibly the absolute most stressful part of my life. It’s like constantly dangling from a noose, trying to hold yourself up so you don’t suffocate. In addition to raising three kids, managing a household, and dealing with an ill husband, I work to try to make ends meet. Medical retirement and disability payments barely cover the mortgage and food. There have been times we considered shopping at the food bank. We get energy assistance so our electricity doesn’t get shut off in the winter. Our kids qualify for free or reduced lunch. We didn’t pay our mortgage for 6 months, and still could barely make it. We get free stuff for our household from the dump. When we have a little extra, we do something fun so our kids don’t have to miss out all the time. We do our best to give them things, and as a result we sacrifice what we want, or live with that much more stress. They only get one childhood, and I refuse to make them feel “poor,” or let them feel as if they are missing out.
My husband and I have both worked since we were about 12 years old. We both have a good work ethic, and we do what we need to do to provide for our family. We always paid our bills, and were responsible with our money. Then the illness took it all away. I have sat around dinner tables where people talked about how “irresponsible” people are who “live beyond their means” or don’t “keep up with their mortgage.” They criticize people who need help with mortgage programs, or who “live off the government.” Comments are made by people who have no idea what it’s like to be in that situation. People judge with no regard to the facts. They judge people who would do anything to be healthy and provide for their family. Living this way isn’t laziness or irresponsibility.
We commonly hear comments from friends or family members who complain about how they struggle or how upset they are over some financial stress they are having. These same people are hiring people to clean their houses, or are taking their kids out to eat or to some fun event several times a week. They are planning multiple vacations every year, and buying new cars. I even had one person tell me they were a little upset that they are now making so much money that they are in a new tax bracket and no longer qualify for the child tax credit. Their tax refund was going to be less this year. I sat there like an asshole and gave sympathy, when what I really wanted to say was that I would literally give one of my arms to be in the next tax bracket, rather than struggling every damn day of my life. I had just told her that we qualified for a new child tax credit because we are low income. These same people know how hard it is for us. Sort of.
There is a shame that goes along with the way we are living. I don’t know why. Shame implies that we have done something wrong. We haven’t. We’ve tried to do everything right for ourselves and for our children. I never, ever share our true financial story with anyone. We pretend it isn’t as bad as it is. People have some idea, but they don’t know what it’s really like. It’s exhausting and hopeless and depressing and frustrating. The stress leaves me teetering at the edge sometimes. Yet, somehow, we always make it through. We are lucky to have some family and friends who have been Godsends at times. There are times we wouldn’t have made it without them. The struggle is never ending, and sometimes people get tired of helping. We don’t know if we will ever be able to repay people for what they’ve done to help us. There is no end in sight to the struggle. We try to pay it forward and help other people when we can.
People talk openly about the physical, emotional and psychological effects of chronic illness on themselves and their families. But when it comes to money, people keep it to themselves. Yet, I suspect it’s one of the most detrimental aspects of living with chronic illness for everyone involved. It is by far the most stressful part of my life and affects my mood, stress level, health and outlook on life every single day. The nonchalant comments from other people make it even worse. I don’t know what the solution is, but putting it out there without shame is a good start.
by Renee Palumbo, Running on Empty
Adapted from the author’s original post, that you can find here.
[title text=”by Renee Palumbo, Running on Empty“]
As I’ve written about in previous blog posts, I have a chronically ill husband. It’s not a disease that will go away. It’s progressive and incurable at this point. It can be manageable, but it’s also unpredictable, and some days are good days and some days are bad days.
Chronic illness affects families in many different ways.
Patients and spouses go through many emotions at different times. An ongoing theme that I’ve noticed affects both my husband and I, and has a ripple effect on the people in our lives, is abandonment. We abandon and we feel abandoned. I can’t speak for my husband, but I can share what it’s like for me. I have always kept this stuff bottled up inside me for many reasons. I feel like I have to be strong and be able to handle everything. But I can’t. I don’t want people who leave me out, to know I feel abandoned because I don’t want them to feel bad. So, I feel bad instead. I feel guilty for having less than stellar emotions. I don’t know why. I’m human and entitled to be negative at times, and feel sadness, and feel upset with people. Mostly, I don’t want other people to worry about me, or have my hard times affect their happy lives. I know in my head that I shouldn’t feel this way, but since when does that matter? We feel what we feel. That is one of the reasons I write. It’s therapeutic for me, and I think it helps other people who are going through the same thing.
One of the hardest things that I have gone through over the past 6 ½ years, is the feeling of being abandoned. There are people who I have thought would be there for me who have not. I don’t think it’s necessarily intentional, but nothing hurts more than people you care about becoming scarce when you are left to hold together a family affected by illness. There have been many people who have stepped up and been great supports to us, and for that we will be forever grateful. But there are others who have not. My husband has told me that he feels left out of things, and he says it doesn’t bother him, but I think it does. I know it bothers the hell out of me when I feel left out. It happens frequently. We aren’t sure why. Maybe people think we can’t afford something, or he won’t be up to it, or maybe we just aren’t as fun because we can’t do everything everyone else does. We wish people would invite us to do things and leave it up to us to decide if we can or not. Sometimes we will be able to, and other times not. I need to get out and keep living my life and do fun things. He is still living and he should get out and do things, too.
Abandonment goes in both directions.
I work, take care of a household, and I’m busy with three older children who have places to go and activities to do. I’m also looking for a better job. Thankfully, my husband is still at a point where he doesn’t need me to be a caregiver, but there are days he doesn’t feel well and I do take care of him. I spend a large part of my life doing for others, and there are those times when a crisis happens and suddenly there is a trip to the hospital. Out of necessity, I abandon those things that aren’t of vital importance. My house tends to be messy…who wants to spend a free day cleaning the stinkin’ house? I do whatever amount of laundry needs to be done in order to give us clean clothes for a couple of days. I’ve also abandoned certain dreams…buying a bigger, nicer house…spending my older years traveling with my husband…retiring, in general. There are those times, when I don’t feel like doing anything on the weekends, so I don’t seek people out to do things with. When you spend your weeks always doing, a day off to do nothing is a luxury. A day to myself, doing anything I want to do is almost unheard of. Because of this, I have done my share of abandoning some people. One of the people that I don’t spend nearly enough time with is my Mom. But she is the one person in my life who I know will NEVER abandon me, no matter what. It’s not fair to her. I am going to change that. The irony of all of this is that I feel abandoned, and the one person who has never abandoned me is the one I leave out. Sometimes, I just feel like I have nothing left to give. I’m tired. There are also times I feel like I’ve abandoned my husband, but again, sometimes I feel like I am depleted of whatever I have to give. I have also abandoned some of the people who have stopped bothering with us. That was hard to do, but necessary for my peace of mind.
Sometimes, you just have to let people go.
All of these feelings lead to that old cycle of guilt and resentment. There are millions of people who are going through an illness with a family member. We have become a caregiving society…people care for aging parents, children with autism and other disabilities, cancer patients, chronically ill family members. It’s not an unusual thing to have someone in your life that needs to be taken care of. Someday, YOU may need to be taken care of. Or you may be taking care of someone. Take a moment to reach out to someone who is going through this. Please understand that a lot of times, the person may say no to an invitation. Keep asking anyway, because it makes a world of difference to know that someone thought of them and took the time to at least ask. It helps people to not feel abandoned and isolated, and that goes a long way.
Renee Palumbo is living life with a chronically ill husband, three children, a dog, a cat, and 5 chickens. In the 7 years since her husband’s diagnosis, Renee has learned that life can change in an instant, and we all have choices in the way we handle a crisis. She holds a degree in journalism and sociology from the University of Massachusetts at Amherst. Renee writes a blog called Running on Empty, which is about seeing the humor in life, dealing with the stress of a family member’s illness, and looking at life from a slightly warped perspective. She hopes that by expressing her thoughts and feelings, she can help another caregiver feel less alone and more understood. Read more of her thoughts at runningonemptyblog.net.
Adapted from the author’s original post, that you can find here.
[title text=”by Renee Palumbo, Running on Empty“]
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 as a spouse caregiver 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.