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Thread: Should a spouse or partner be a primary caregiver?

  1. #1
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    Should a spouse or partner be a primary caregiver?

    November is National Family Caregivers Month. What are your thoughts on becoming a family caregiver? Please below or on FacingDisability.

  2. #2
    Moderator Obieone's Avatar
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    Whether or not a partner of a couple chooses to be the primary caregiver for the other with an sci is pretty circumstantial and a decision based on a variety of factors.

    In our case my husband Bill a T5 complete for almost 14 years is very independant despite many set backs. When he had health issues related to his injury (and some not) I was the one who did the majority of his care which included years of dressing changes, assistance bathing and other activities of daily living. We could have had home care and did opt for it occasionally in the early years until I became familiar with what needed to be done. Much of what I learned I gleaned from here at CC and ironically I soon found myself teaching and sharing knowledge with the medical teams working with Bill as I became more competent.

    We live in a rural area and in a northern climate - all our emotional support system is here - there are financial considerations because when Bill was hurt we had no insurance - he was 50+ when he was injured and we had been married a long time and already had our family of 4 ! All these factors came into play - but without a doubt its true that in an ideal situation the less nursing care a spouse does for the other the better because there is no doubt it changes the relationship.

    I am finding as I age I have begun putting my own needs first more and more because my own health requires my attention - the years have taken their toll. I also notice I have been experiencing some feelings of resentment creeping in because while there is always me to look out for Bill when necessary there is no one to care for me in that same way.

    It's complicated - but I love him and I'm in it for the long haul ! Although I'm not ashamed to say it would just be nice - to look "up" into his eyes now and then - and feel his big strong arms around me - like the old days! I think it's perfectly normal to have those feelings - coming here has helped to ease that pain many times over the years !

    If you use the search function you will find other discussions regarding this topic - it has been discussed pretty thoroughly and has come up often over the life of CC - when I have more time I will try to find them for you !

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  3. #3
    Obie puts into words so many of my feelings. Our circumstances are similar in many ways and we have old man winter coming-blah!

  4. #4
    You ladies remind me so much of my beautiful wife. I can assure you we gents, feel the pain and lonlyness you feel. There are times that I would gratefully choose death over putting my wife in the circumstances she has to endure because of me.

    I realize you do it because " that's what we do for our spouses"; yet it still pains us seeing you do it. Thanks for being there.

  5. #5
    Obie is wise in many ways, great post / response

    And LindaT is also well versed in this unique dynamic of spouse/caregiver.

    Complicated, challenging, incredible doses of human compassion immediately spring to mind.

    And as Obie has indicated, there have been many threads over the years discussing the same subject, the OP may want to try the "Search" box above.

    As an SCI patient myself (C6-7 quad, 11yrs post) and now part of the Administration at Craig Hospital (22yrs, Top 10 Rehab Hosp) I see the challenges of spouse/caregiver, parent/child, sibling/sibling, (relationships are defined in many ways) etc. day after day.

    We see approximately 450 patients annually - (Craig is 105 yrs old!) in many forms, shapes and sizes all suffering and challenged by these life-altering catastropic injuries (SCI & TBI). Overall and unequivocally I would say that if outside assistance is within your family's budget - Do It! Make it a financial priority.

    There are a few exceptions, and I do mean EXCEPTIONS like Obie, Linda and a few others. However, after 11yrs of patient / family teaching, mentoring and observation I have probably witnessed maybe a dozen 'relationships' that have stood the test of time. The majority burn out within a year or two and typically the relationship dynamic suffers damage beyond repair. Every husband, wife, caregiver goes into the role with the best of intentions but unfortunately and inevitably finds the delicate balance and obstacle negotiation beyond anything they could have realistically imagined. There are a lot of moving parts and untold details & complications especially in those early days, months, years.

    Humbly, I believe that a caregiver is a caregiver and a spouse is a spouse. The less those two roles cross the better. Obviously, in an emergency situation or unique events (vacations / travel) there may be necessity however I would caution against it if at all possible.

    Sometimes, as in my case, even with the financial resources of caregiver support (I went back to work immediately after discharge) a previously loving relationship becomes a casualty. My wife was emotionally devastated by my accident and she never recovered. Sadly, five years post, we divorced. It still breaks my heart as the tears roll down my cheeks. Objectively I understand it, personally its a knife in my heart..

    Ultimately, there is no way to determine the outcome of any relationship dynamic. However, in most cases, a spouse that substitutes as a caregiver accelerates the negatives and dilutes the positives of what you once may have shared..

    Good luck, Onward & Upward.

    Chris

    P.S. Obie and Linda - god bless, you are saints..

  6. #6
    (((blushing)) Not sure if worthy of the compliments, but thank you.
    Craig is a wonderful place. I doubt we would manage had we not gone to Craig Hospital.
    We will NEVER forget that special and unique people that work there. RTs are saints in our book.
    It was the toughest thing we ever went through-sort of like boot camp!

    We have learned to have as much help as we can afford, but often situations are that a family member has to be a caregiver. It isn't perfect, but people do what they have to do.
    It helps to have places to vent about our frustrations-there are many.

  7. #7
    Moderator Obieone's Avatar
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    Hi again AnnieH

    Here are some links to past discussions on this subject - there are many more - and I'd like to thank you for drawing attention to this particular issue because it certainly does bear repeating.

    Resurrecting some of these older threads reminded me how important this issue is - and sadly - how timeless it remains - I do hope you find them helpful :

    http://sci.rutgers.edu/forum/showthr...regiver+spouse

    http://sci.rutgers.edu/forum/showthr...regiver+spouse

    http://sci.rutgers.edu/forum/showthr...regiver+spouse

    http://sci.rutgers.edu/forum/showthr...regiver+spouse

    http://sci.rutgers.edu/forum/showthr...regiver+spouse

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  8. #8
    Moderator Obieone's Avatar
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    ...... and thanks for the kind words Patrick and Chris ..... but you're just going to have to trust me on this ..... I ain't .... no saint !!

    Obie
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  9. #9
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    The prevailing mantra at this site is not to have family as caregivers. Having said that, I have been my brothers 24/7 caregiver for 12 years now (!). but that is different than most here. If it had been my husband I would probably feel the same but we are all different, with different circumstances, finances and views. The most important thing to me is attitude, if I ever came to resent, begrudge or whine about life changes then it would be time to hire. I choose to live without help because I value my privacy so much. We tried a PCA twice but were robbed or spent our time trying to get away from the aide. A lot depends on how high the SCI is, complications and other medical conditions also. If my brother was nasty, whiney or depressive it could be a different story, I have met some people that are unpleasant to be around but my brother has adopted a positive outlook and that makes a huge difference. Although our lives are not what either of us envisioned, we have a loving, beautiful home, are financially secure and able to see the sun shine. How different that would be if financially insecure I couldn't imagine. There will always be uphill battles at times but our frustrations are clearly aimed at possible symptoms (leaking legbag comes to mind) not the person. I have met many couples and families that do just fine. So. I guess speaking as a sibling caregiver, attitude and financial security make all the difference.

  10. #10
    You are all wasting your time responding to this thread. The originator's threads are all just links to other sites - not genuine questions. Probably just trying to generate web traffic. Sorry to be so cynical but when it walks and talks like a duck ...

    Nice summary of thread links Obieone. It is an import topic and I will be browsing all those.

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