We Have No Choice But to Be Strong
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.Emotions: They are what they are | The Caregiver Space

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.

Written by Renee Palumbo
Renee Palumbo is living life with a chronically ill husband, three children, a dog, and a cat. In the 10 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.

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10 Comments

  1. Thanks , I have recently been searching for info about this topic for a long time and yours is the best I have discovered till now. However, what concerning the bottom line? Are you certain in regards to the source?|What i don’t understood is if truth be told how you are not really much more neatly-preferred than you may be now. You’re very intelligent.

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  2. Wow. I know exactly how you feel. My wife was sick for 6 years and passed away Saturday the 20th of September 2014. What I did for her, I did because I loved her and I made a promise before God to do it. I am both sad and relieved because she has no more pain. Now I feel more guilty because I feel I should have done more. I was so busy with the physical part of the caregiving – attending to wound dressings, organizing oxygen, cooking, making the bed, etc that neglected to tell her how much I loved her. As you said Renee people that have not walked in your shoes will not have the faintest idea of what you are going through. You and others in the same position are in my prayers.

    Reply
  3. Thank you for putting in words how I feel. Trying to work full-time while being the sole caregiver of my husband who has advanced copd and pulmonary hypertension among other illnesses always leaves me feeling like I’m not giving my all to either even though I feel like I’m constantly in quick sand and will never get out.

    Reply
  4. I am there too — my hubby has had pain med issues, former alcoholic, Multiple Myeloma, diabetic, high blood pressure, and last year a stroke — he is a changed man and now has been experiencing seizures….. has left neglect in arm and hand. The stroke and seizures are changing his personality- more paranoid, accusations, and cold shoulder — but most of what you say I can relate to — I miss having a life, I miss seeing my friends, I can see any illness or problems I have get no help or sympathy from him – he just sees how that will affect him. Presently he is in a care center after several pneumonia episodes from silent aspiration issues — and those seem to be my fault too. It’s a no win situation. It’s a vacation for me not having him at home – sorry to say that but it is. I have been able to go back to the office to work instead of working from home. I am so burned out I can’t believe it – and the stress has been huge….. thanks for your words about resentment and guilt, along with understanding how much present and future are lost due to illness…..

    Reply
  5. Wow! This is spot on for me as a caregiver to my partner who has ALS. We have a 15 month old daughter and I could have written this article myself. Well put!

    Reply
  6. I have been caring for my husband with advanced COPD and Lupus for several years now…I feel exactly the same way. I receive a lot of comfort and hope from my faith and Church, But that often times makes me feel guilty too, because of time spent away from Him. your right it is what it is.

    Reply
  7. I feel like I just read my own thoughts. Very well expressed and thank you for sharing, you aren’t alone ❤️ -Melissa Irvine

    Reply
  8. WOW this article hit home big time, thank you for writing and posting. Now I hope non-caregivers will read it in an attempt to understand what the caregiver is feeling.

    Reply
  9. I just lost my husband of 38 years after finding he had liver cancer 7 months ago. I stopped working to take care of him and I all these thing said I have felt along with alot more now that he is gone.

    Reply
  10. I hear you loud and clear. It’s like you read my mind and my heart!

    Reply

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