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

  1. #11
    Moderator Obieone's Avatar
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    Quote 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
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  2. #12
    Senior Member djrolling's Avatar
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    Quote 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.

  3. #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; 11-21-2011 at 01:04 AM.

  4. #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

  5. #15
    Senior Member zillazangel's Avatar
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    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)

  6. #16
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    Kendell, my friend. I was so moved by your tribute to Debbie and your life together, and I have missed you on these pages but have also understood that it might be difficult for you to keep on at this site. I am also on facebook now, and would be more than happy to give you my contact info if you pm me. Meanwhile, know that you have been thought about with affection and with concern too. Hugs to you.

  7. #17
    Quote Originally Posted by zillazangel View Post
    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)
    I think what Ami is saying is it all come down to the skin you have in the game. Having outside caregivers (especially for a married couple) is intrusive and invasive to the relationship. There are those who will post their experience with hiring outside help for their mother or father, but when it comes to the rubber meeting the road, those that hire outside help and don't have to live in the triangle of the relationship, just don't get it because they are not there for the day to day grind and lifestyle impact.

    Most of those who have spouse caregivers are trying their very best to have a "normal" life routine. Outside caregivers, no matter how good they are, just don't have the same investment that spousal caregivers have. It is tough to be in a spousal caregiver relationship, but it is a lot tougher living through the dramas, incompetence, and inconsistencies of hired help.

    All the best.
    GJ

  8. #18
    Senior Member zillazangel's Avatar
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    Quote Originally Posted by gjnl View Post
    I think what Ami is saying is it all come down to the skin you have in the game. Having outside caregivers (especially for a married couple) is intrusive and invasive to the relationship. There are those who will post their experience with hiring outside help for their mother or father, but when it comes to the rubber meeting the road, those that hire outside help and don't have to live in the triangle of the relationship, just don't get it because they are not there for the day to day grind and lifestyle impact.

    Most of those who have spouse caregivers are trying their very best to have a "normal" life routine. Outside caregivers, no matter how good they are, just don't have the same investment that spousal caregivers have. It is tough to be in a spousal caregiver relationship, but it is a lot tougher living through the dramas, incompetence, and inconsistencies of hired help.

    All the best.
    GJ
    A much more elegant way of saying it - yes!! SKin in the game, that's exactly the right analogy. And the intrusiveness of hired help in a relationship is immense.

  9. #19
    Hello "Zilla" and Eileen -

    I've missed you both, too. I am on FB ( will pm you both) and have really not participated in anything else online but that since Debbie died for various reasons. Given that along with the worst loss of my life last year I also dealt with ovarian cancer (still in remission), the loss of two pets, and - after Debbie's death bankruptcy and foreclosure - I haven't trusted my emotional status a great deal to post here. I've lost three friendships as well over the first part of this year and all these things have made me rather cautious and somewhat self-protective. I tend to post from my heart and just didn't feel safe putting myself out there. Mostly the waters here are safe but occasionally a shark swims by and I wasn't up for being bit, ya know?

    So what have I been up to? Pure survival for the first few months both emotionally and financially. I started picking up clients for my home health care agency. That was a difficult adjustment since Debbie had been my only one and I knew her inside and out. Didnt' help that some reminded me of her. Love my clients dearly, but I do tend to get emotionally attached. We're not supposed to do that but how can you not? The job doesn't pay all that well and so I tried looking for better paying jobs, but it's a tough market for a 48 year old who's spent the better part of the last two decades being a caregiver for family and my love. So avoiding foreclosure was not an option. Medical bills from my cancer made avoiding bankruptcy impossible as well.

    Once upon a time I had an LSW (licensed social worker). I had let it lapse long ago. I realized that if I could get it back that was my best chance to begin a career for myself that would help me be more financially secure as well as rewarding to me. I checked into it a year ago and at the time it was impossible, but thanks to some rule changes I was able to regain it recently. Hopefully that will lead me to a new job soon. I've been a bit distracted recently because - after more than a year - the bank finally is going to kick me to the curb soon and I've been hunting for apartments with a male friend of mine. Just a friend - no romantic entanglements here nor am I in any rush for that. I"ll be moving soon and that's kept me busy so not much time for job-hunting yet. Our home was overflowing with 16 years worth of flea marketing finds, medical equipment and supplies, assorted items for what was 4 pets, and Debbie's pack-rat-itis "stuff" which was simply everywhere. A year later I"ve managed to reduce what was in this house by at least half, but I've still got more to do. It's been tough selling things I wasn't ready to sell but needed to. Letting go of "things" is part of the process, but it stinks to be rushed on it. And while I"m ready to let go of the house now, I'd still prefer I could have done it my way, in my time.

    And then there were all the "firsts". This past Oct. 4th completed those, but they were rough. Even if I didn't consciously recognize some of them right away my body knew. I think I got sick to some extent - really sick especially before the first Christmas - every time. Flea markets were such a big deal for us that this summer presented emotional challenges with those. I went to a few when a friend would go along but they aren't the same. I'm still not really looking forward to these holidays. My family is mostly gone now.

    So that is a really Cliffs' Notes version of where I've been. Mentally I"m coping better now, but there is not a day goes by i dont' miss Debbie with all my heart. Really wish y'all could have met her.
    Reality is merely an illusion, albeit a very persistent one.
    - Albert Einstein

  10. #20
    Quote Originally Posted by zillazangel View Post
    A much more elegant way of saying it - yes!! SKin in the game, that's exactly the right analogy. And the intrusiveness of hired help in a relationship is immense.
    Absolutely. My husband has been my caregiver for the last 8 years, we are fortunate that I am able to use my self managed care money to pay him. It would not be a sustainable situation if he had to work another job as well.
    Of course the situation can be difficult at times, he had to consciously work to have an outlet to prevent burnout, and I need to respect him as a caregiver, not just my husband. We both work to keep the 'ickier' side of my care seperate from our intimate relationship.

    For us, the privacy, convienience and control that having him be my caregiver gives us is worth every bit of stress. It would be far more stressful to have strangers coming into our home at their conviennce, not ours, and doing everything on their schedule. Plus, as a family with 2 young children it would be awkward to arrange some things - like I have funding for someone to prepare my meal - do I eat something different than the resxt of my family? Does the caregiver assist my husband in cooking the meal? As it is, he and I enjoy cooking together - I plan the meals and do what I can while he handles the heavy or hot portions.

    And as you say, he loves me and has a vested interest in keeping a close eye on my skin or doing my ROM thouroughly, etc. Any complications I have would significantly affect our whole family.
    Emily, C-8 sensory incomplete mom to a 8 year old and a preschooler. TEN! years post.

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