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Should a spouse or partner be a primary caregiver?

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    #16
    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.

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      #17
      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

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        #18
        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.
        Wife of Chad (C4/5 since 1988), mom of a great teenager

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          #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

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            #20
            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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              #21
              I am coming up on 7 years since my injury, I am a low injury T- 11 paraplegic. Jake and I had barely been together a year when I was injured, we were seniors in college when it happened still living in the dorms. I thought for sure that our relationship would be quickly over. Jake and I will celebrate 8 years together come the end of November and he has been helping with my care from the very beginning. Even though I can do a lot on my own and am hugely thankful for that -- I still need some help with certain tasks. Jake and I lived with my family during the first year which meant my Mom and Jake helped me through the worst, and the learning period. Jake has been my sole caregiver for the last 7 years... doing just about everything at some points, even changing would dressings with a wound vac for the good part of a year. He would rather do all of my care then not do it--he honestly doesn't trust anyone except maybe my own Mom to help me or take care of me-- we have attempted to have PCA and they wouldn't show, or were more trouble when then they were worth when they did. Jake and I had to learn how to compartmentalize our relationship and to be respectful of one another. If I treated him like an employee or he treated me like a patient it wouldn't work. He cares for me more then anyone in my life and I care for him as well. I know he has vested interest in my health and that makes both of us comfortable. I also have a vested interested in his health and well- being and respect what he does for me daily. We make sure he has time to himself, has a place to blowoff steam and we do activities together as a couple when we can. He works out, spends time with friends, and also works outside the home to get some separation from me as well. We are only lucky enough for this to work because I don't need constant care and because we respect each other to know when we need a break. We talk often about where we are or if one is feeling overwhelmed. I think if your going to be a caregiver or be the one taken care of by a spouse or significant other you really need good communication, and also separate things to do to blow off steam. Do I think a spouse or family being someone full time caregiver is always a good idea --absolutely No but it can work and be wonderful for both parties.

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