Away from sick spouse for extended period of time

My husband was recently diagnosed with Lympholymblastic Lymphoma. We were in a transition time of our lives, I had just started a new job a few hundred miles away in a new city. He hadn't moved up yet, because he was finishing up his job, and fixing our townhouse up for renters to move in. He was living with his family while fixing up our townhouse. We were days away from going to run the Boston Marathon this year when we found out the news.

He has to be in the hospital for a month, then six months of outpatient chemo, then two years of maintenance. I'm living with his parents while he is in the hospital, but have to return to my job soon. I think he will continue his treatment close to his family and support system. We don't know anyone in our new city yet, and we can't imagine going through all of this alone.

Since I just started my job, I don't qualify for Family Medical Leave. I am also the primary breadwinner, and we cannot have an interruption in insurance with Personal Leave of Absence. So, I will be commuting every other weekend to see him for six months. We are very lucky he has such loving parents, family, and friends near his home. His mom has over three months of sick time saved up that she can use, and qualifies for medical leave from her job. She is able to be the primary caregiver, which is a huge blessing.

I'm curious if anyone else has had to be away from their sick spouse for an extended period of time during cancer treatment. How did you manage care-giving? How did you cope having to be so far away for so long?

I'm looking for any support, resources, guidance you can provide.

Gratefully,

Jill

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  • Hi Jill!

    I'm in a similar boat, though I'm not a 'spouse'. My boyfriend also has ALL, and left to start treatment in another prefecture in February. Sadly, there is no outpatient potion, just a straight shot until (hopefully) a bone marrow transplant. Because I'm not a citizen of his country, I can't drop everything to go with him-- my visa is tied to my current job. Like you, his mother was able to leave her job and is now living near the hospital as his caretaker.

    One of the hardest parts for me was to relinquish control. As his partner, it's hard to accept that I'm just not there-- I'm not the one who is at his side through every treatment, I'm not holding his hand when he gets news from the doctor, and I'm not the one he will lash out to when things get tough. His mother and I had a difficult time at first because I was so frustrated, unable to be involved more. I had to accept that, in reality, his mother was his caretaker, NOT me, and my job was to support both of them as best as I could and respecting that I wouldn't be there for every little decision.

    I also struggled with a need for validation. I was a spoiled girlfriend! I always wanted (and got) attention, and I was always the one being doted on. Now his priority in life isn't me and my feelings, but healing. It was hard to deal with, and I found that sometimes I was still seeking validation from him, prying for information or signs that I was still #1. I didn't realize it, but I was doing it! It wasn't fair to him.

    It isn't all negatives, though. There are some things that I can do for him that those physically close cannot. For example, there were many things we were involved in before his diagnosis. I keep him updated on what's going on at home, what work is like, etc. I make sure that he knows that hasn't disappeared, and that even though life is going on up here, he's still a part of it. Honestly, it will be easier to talk to you at times, because unlike those next to him, you'll be living a normal life-- he won't want to talk about cancer, hospitals, and more cancer, all day!

    As for coping, I made a closer connection with a friend I knew could handle it. I don't talk to most people about his illness (it's just not appropriate culturally), but this one friend I know I can talk to. I keep an anonymous blog about the process and my feelings, and talk to a psychiatrist. Also, I plan for the future-- I'm mentally preparing for life after he receives a bone marrow transplant, and what different needs he may have.

    If you ever want to chat, you can mail me anytime!