Invisible Caregiver Stress?

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Elsieblue
Elsieblue Member Posts: 4
edited April 2016 in Caregivers #1

 It has taken me seven years to find my way to this forum but I am so grateful to have found it.  I don’t even know what to say except that I am only now realizing the full impact our situation is having on me, and it finally occurred to me to connect with others with similar experiences.

 My husband I are in our late 40s. We had about four good years after his first diagnosis and we lived in some denial about the big picture until the recurrences started happening with increasing frequency and the prognosis became more ominous. He is not undergoing treatment now although the cancer is back and we are heading into another scan that will likely indicate the need for more chemo. 

The cancer has sadly created so much distance in our relationship. He is understandably very depressed and often checked out, and he is not working so I work overtime.  So I am wondering whether there is such thing as invisible stress, when your spouse is not acutely ill but everyone is suffering from the weight of the situation? It’s not like I am overwhelmed by actual caretaking activities right now but I often feel without a partner, yet I urgently want to make the most of the time we have. The general mood is so low, and we are living scan to scan. Some days (or moments) I am fine, other times I just feel numb, and yet others I’m an emotional wreck.

I hope this makes sense and is not too long. I would love any insight. Reading the other posts here has already been helpful.

 Thank you!

 

Comments

  • cheatinlil
    cheatinlil Member Posts: 197
    #2
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    Elsieblue,
    I'm sorry you are

    Elsieblue,

    I'm sorry you are here.  You are not alone in how you are feeling.  I really don't have much to offer.  I am very new to this myself.  I think we have been on this journey 2 years now and my husband has not worked in a year and is not planning on going back.  I hope you have applied for Social Security disability to help with the financial burden.  My husband has stage 4 cancer and the application process was pretty quick and easy.  I also just found out you can freeze your school taxes so they do not go up annually.  I just applied for that.  Right now my concern is for our finances so that is why i'm giving you that kind of advice.  The stress is overwhelming and yes, I too feel very alone with the burden of it.  No one seems to worry how I am doing.  I also found an organization called Cancare that will connect you with another caregiver to talk to.  They will also connect him with another cancer patient to talk to.  Caregivers and the cancer patients problems are VERY different.  Hugs to you.  Keep posting.  Chin up :(

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #3
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    I hear you

    While we may have been taught how to live through acute illnesses in our loved ones and spouse, chronic yet terminal illnesses (think COPD, congestive heart failure, cancer with a high likelihood of recurrence or that has left serious damage) are a different matter.  The never ending stress is overwhelming after a time.

    The desire to live life as fully as the disease will allow, make memories that will last and show our spouse how much we care while trying to maintain a career and some type of normalcy in other areas is exhausting and physically harmful after a time.

    Add to all this possible guilt (entirely misplaced) and our own physical needs and illnesses...how could a relationship not falter?

    Before my husband's health made it too difficult, we went for overnight stays at a nearby small town.  Just the change of pace helped our feelings.  Even a restaurant that is different helps these days.

    There is a good book called "The Long Goodbye".  Take look online.  It might help.

    Hugs, Elsie.

  • Elsieblue
    Elsieblue Member Posts: 4
    #4
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    cheatinlil said:

    Elsieblue,
    I'm sorry you are

    Elsieblue,

    I'm sorry you are here.  You are not alone in how you are feeling.  I really don't have much to offer.  I am very new to this myself.  I think we have been on this journey 2 years now and my husband has not worked in a year and is not planning on going back.  I hope you have applied for Social Security disability to help with the financial burden.  My husband has stage 4 cancer and the application process was pretty quick and easy.  I also just found out you can freeze your school taxes so they do not go up annually.  I just applied for that.  Right now my concern is for our finances so that is why i'm giving you that kind of advice.  The stress is overwhelming and yes, I too feel very alone with the burden of it.  No one seems to worry how I am doing.  I also found an organization called Cancare that will connect you with another caregiver to talk to.  They will also connect him with another cancer patient to talk to.  Caregivers and the cancer patients problems are VERY different.  Hugs to you.  Keep posting.  Chin up :(

    Thank you so much,

    Thank you so much, Cheatinlil, and I am sorry that you are here too.  Two years is more than long enough to feel the full range of this roller coaster :(. Thanks for the excellent financial advice - I will definitely check into the school taxes! And you're right, the focus on finances will help my stress level. My husband is on SSD too. I hear you about people forgetting to ask how you are doing. Even when well-meaning people do ask me how I'm doing with all of this, I hardly know how to answer! I am not sure people are really prepared for an honest response.  Cancare sounds wonderful and I will try that. We do have very different kinds of stress as caregivers. Hugs back to you, and prayers too.

     

  • Elsieblue
    Elsieblue Member Posts: 4
    #5
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    Noellesmom said:

    I hear you

    While we may have been taught how to live through acute illnesses in our loved ones and spouse, chronic yet terminal illnesses (think COPD, congestive heart failure, cancer with a high likelihood of recurrence or that has left serious damage) are a different matter.  The never ending stress is overwhelming after a time.

    The desire to live life as fully as the disease will allow, make memories that will last and show our spouse how much we care while trying to maintain a career and some type of normalcy in other areas is exhausting and physically harmful after a time.

    Add to all this possible guilt (entirely misplaced) and our own physical needs and illnesses...how could a relationship not falter?

    Before my husband's health made it too difficult, we went for overnight stays at a nearby small town.  Just the change of pace helped our feelings.  Even a restaurant that is different helps these days.

    There is a good book called "The Long Goodbye".  Take look online.  It might help.

    Hugs, Elsie.

    You are so right

    You are so right, Noellesmom. It is so true - there really is no ready "how to" on the chronic illness caregiving, especially with the chronic dread, day to day stress, etc. Just slow losses, I guess. We have a teenage daughter and have not explained the full picture to her yet, but that is a whole other issue.  I will definitely get that book, too.  

    Thank you, Noellesmom. I am sorry you are here but grateful for your words of wisdom. Hugs and prayers. 
       

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