vector illustration of a white woman with read hair sitting under a rain cloud, concept of depression, isolation, hopelessness of long-term spousal caregivers

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.


If you are in a crisis situation

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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1 Comment

  1. I would really, really love to talk to Renee. I read this and for the first time in 11 years, feel exactly what she has felt and understand truly what I’ve been feeling. I couldn’t put my finger on it—I work, I do the basic fundamentals, I take care of my husband…but yes….no interest in cooking, cleaning up much, even showering. I thought it was just exhaustion. Now I’m thinking it is more.

    Not having peace and normalcy really has taken a toll on me and my emotions are all over the place. Anger, resentment, sadness, guilt, worry, fear…and my heart breaks for him and the life we thought we would have together. No one prepares you for this and you are thrust in with no warning, and even if you had a warning, you don’t fully understand or feel the effects until you both live it daily, 24/7, w no break. Thank you for sharing this piece. I am going to make an Appt w my doctor to talk about how I’m feeling.

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