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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
    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

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      #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!

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        #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.

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          #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..

          Comment


            #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.

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              #7
              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 :

              https://www.carecure.net/forum/showt...regiver+spouse

              https://www.carecure.net/forum/showt...regiver+spouse

              https://www.carecure.net/forum/showt...regiver+spouse

              https://www.carecure.net/forum/showt...regiver+spouse

              https://www.carecure.net/forum/showt...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

              Comment


                #8
                ...... 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

                Comment


                  #9
                  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.

                  Comment


                    #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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                      #11
                      Originally posted by MSspouse View Post
                      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.

                      Thanks for the heads up MSspouce - I was wary of the links too but upon further investigation they all appear to be legit sci info sites - so unless they are spam or self promoting it's all good.

                      I'm always glad to resurrect old discussions for the silent newbies (of whom there are many) - but do I appreciate you keeping CC's best interest at heart ! Perhaps AnnieH will elaborate more by joining the discussion.

                      Obieone
                      ........ oh and your welcome
                      ~ 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

                      Comment


                        #12
                        Originally posted by MSspouse View Post
                        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.
                        I get what you are saying but even so the info is great and helpful to people and really did not serve to build up the other site since it was disused here and not there.

                        Comment


                          #13
                          Through the years my husbands injury incomplete c567 has been heart breaking ,but he told me this is not what I wanted for you, and I said you would do it for me. And he hasnt ever said that again, know matter what we have been through I have always known he loved me, that keeps me going, doesnt mean we agree on somethings but when we fuss or cuss we do get stronger each time we are still together at the end of day, and true as years go by you do have to take care of you to.
                          Last edited by Peacegirl_11; 21 Nov 2011, 1:04 AM.

                          Comment


                            #14
                            My situation was a bit different from some as my life partner had been injured some 25 years before we got together. She had her routine and - at that time - was still pretty independent. I freely admit I was nervous about making that committment both because I realized that she did have health issues that would worsen with time and I would be her caregiver, and because I had lost a life partner to cancer years earlier and knew that my new love probably would not live to a ripe old age and I would have to face loss again.

                            And all that came true. And it was difficult - damn difficult at times. I surely second everything Obie said. As Debbie's health went downhill and my role as her caregiver vs. her spouse increased, we walked a tightrope trying to maintain our relationship. There was resentment on both sides at times. In the end, we developed a beautiful partnership (though never without some problems - I aint' a saint either and neither was Debbie!) but it was hard and I can understand - though sadly- why sometimes it doesnt.

                            We had 16 years together. She died Oct. 4th, 2010. My life has been turned upside down since her death, both on the most obvious emotional level- I still miss her tremendously and life feels rather pale without her to share it with even more than a year later - as well as physically and financially.

                            If I could go back and make the choice to be with her again knowing what the future held, would I do it? In a heartbeat... Despite the stress, the financial difficulties, the physical impact on my health, the tremendous pain of losing Debbie when she was only 54, I would do it all again. People wanted to call me a saint for staying with her. The simple fact is, for all she could not give me on a physical or financial level, what she gave me in terms of unconditional love, emotional support, making me laugh, and just knowing she was always there for me - that was priceless. Maybe I'll have a companion again someday, but there will never be another Debbie.
                            Reality is merely an illusion, albeit a very persistent one.
                            - Albert Einstein

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                              #15
                              Despite it being a thread potentially just to direct traffic away, I'd like to weigh in too because I have a lot of experience with this now. By way of background, I met Chad 15 years after his injury, we dated for 1.5 years and we've been married for 6.5 years. For nearly all of that time, I have been his primary caregiver. For all but the last 1.5 years, I have also held down a full time job, raised my young son, and managed all aspects of the household.

                              Should a spouse be the primary caregiver? In many ways, yes. There is NO ONE who will do as good of a job as someone who gives a shit about the injured person. No matter how good a PCA is at first (and 50% of the time they suck right out of the chute), their performance declines rapidly over time and you are stuck with substandard care that affects both the injured spouse's actual health and both spouses quality of life from worry over health and worries and hassles about the PCA's performance. In many ways, no. It is hard, hard, hard work. At least when it comes to higher level injuries. In my case, Chad can shoulder shrug and turn his head, that's it. If he was lower level or more capable, it would be a slightly different story. I know that LindaT and Lisa also struggle because they face similar levels of disability in their spouses.

                              So in part the "answer" lies in the injury level. Paradoxically, the higher the level of injury, the more the primary caregiver should be the spouse because the screw ups of a PCA impact the injured spouse tremendously and sometimes irrevocably. But primary does NOT MEAN "only". In my case, we have live in help now, and that live in help is family, and I only work part time now and that is the absolutely ideal situation. I couldn't imagine a better situation for us because we really love the family member who lives in - he is GREAT and we all coexist together incredibly well, but I do know that is rare.

                              So its a complex question but the knee jerk answer of "no, a spouse should never be a primary caregiver" is not always the right one. It really depends on the level of the injury, the financial situation of the family, the ability of the non-injured spouse to stay at home (or not) to be the primary caregiver (or whether they are forced, as I was before, to ALSO be the primary caregiver AND work full-time, that is a recipe for disaster), and the quality of the PCA involved. None of these are black and white and should be considered and reconsidered over time.


                              ETA: kendall (((( hugs )))) I miss you dear friend .... if you are on Facebook, come find me? (pm me for my last name if you don't remember it still)
                              Wife of Chad (C4/5 since 1988), mom of a great teenager

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