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Thread: Caregiving by Strangers?

  1. #1

    Caregiving by Strangers?

    Have been attempting hard not to reply on a previous thread by someone who asked for help with questions in re to their son getting paid to become the caregiver. Then I decided to start this thread instead after hearing something in the news tonight. Thought I just had to say this and that it might help many others with the same thought.

    It has been my experience that many times we, whether quad or para, often need help in spite of our attempts to be as independent as possible. I have known most of my life as a para and have managed to be independent through it all but recently things have changed for me. Have found myself in need of help more and more with time and the many health issues that have entered my life. Thankfully, there has been a lot of help given to me with HR and the caregiving facilities in this city. The help I have received has been varied. The caregivers also have been different. Some of them have been a good experience but there have also been some whom have been a nightmare for me. Have been so stressed because lately they have been sending me what seems to be the ones from the bottom of the barrel. Since Nick has always been doing his best to be there for me in his free time, it has really taught me a few facts. They are that at times it is best to have family to help instead of having someone(a stranger) come into your home and expose yourself to problems that you can't cope with at times.

    It is possible that I will be critized for having him become my official caregiver but this is what works for US. He has been been working with the health agency for over a month now. It has been a relief to have him to take care of things for me. It has also made things easier for him since he does have to take Isis to school every day since he is taking her of by himself. There are many things at home that I will not go into but it has made it easier for him to work here and not have to be missing work because he has to come home in an emergency or because there is no one to take care of us(Isis or I).

    The suggestion of him taking care of me came from one of the caregivers herself. She would go to sleep while I would take a nap and I guess because I had to talk to her about actually working during working hours instead of sleeping while I was sleeping, she must have thought she would kind of hurt me with the suggestion. But who knows really what brought that up? One thing I do know is that was one of the problems I had met with several of them plus their absences.

    Anyways, he has been a really great help. It has helped us as a family in our family situation. Most of all, I know I can trust him to be here when he is supposed to be here and not be sleeping during working hours. We spoke with the HR office and the agency before we could have him become my caregiver. They both accepted to give him the job.

    Oh, btw, he used to work before and also did help with housework and yardwork when he was home. The agency is now sending a lady which has really worked out better and works on week ends only. Her parents also are now under the same agency and her sister is their caregiver now. Seems that the idea of a relative being the caregiver is not such a bad idea. Plus, I do think they deserve to be paid for the care since they are working and possibly more dedicated than a total stranger would be. Now my worries and problems with the troublesome caregivers are gone. Also, they are going to start me on the CBA program soon. Have been waiting for them to sign the papers to start me now.

    I also wanted to post the following link which makes me feel so glad that I am not having to deal with strangers as my caregivers anymore ..

    I thought how sad that this could happen to this lady and at the same time glad that I made the decision I did.


  2. #2
    My husband and I feel the same way. As difficult as it can be (for both of us) to have him as my caregiver, it is much better than having unreliable, inexperienced strangers coming into my home to care for me on their schedule, not mine. With my husband as my caregiver I get up and go to bed when I want, eat and shower when I want, etc. etc.

  3. #3

    Thanks very much for your post. It is very helpful.

    The issue that has been raised is a very important one. The burden of caregiving has fallen on the family, often the parents and the spouse, and sometimes the children. While we may think that family members should provide care for free, our current approach may be encouraging stranger care of people with disabilities. I am not sure that this is what we want.

    Last edited by Wise Young; 05-08-2007 at 01:35 AM.

  4. #4
    Raven, thank you so much for starting this thread. I,too, was striving to stay out of that other thread. Some of the responses really were hurtful.

    I am Debbie's paid STNA. When she first began receiving aide assistance, she was using aides from a home health care agency. Pick a problem that could possibly arise from having strangers in your home and we had them. There were serious issues of abuse with the last aide and that became the last straw. We found out that I could be her aide and decided to go that route.

    For all the reasons you posted, this has worked for us. The number one reason I continue to be Debbie's aide is for her peace of mind. How often have people posted about the same issues of agency aides not showing up, lying, stealing, etc... We do not have that concern any more with our current situation.

    It is not a perfect situation in all ways. What is? But it works best for us for now.

    Every situation is different, and I wish people would keep that in mind.

    Thank you very much for your post, Raven.

    BTW - Wise - though I was eligible to be Debbie's paid cg in Ohio under the Medicaid Waiver program- even as her life partner and living in the same home- I was required last year to go through an STNA (State Tested Nursing Assistant) program. Before I had worked as an HHA (home health aide). Other laws have changed and I'm not sure what the eligibility requirements are at this point. As far as I know, every state is different as to whether they will or will not allow family members to be paid cgs.

  5. #5
    I took the liberty to put this link in the thread that Raven spoke of here that inspired her to start this thread...

    Hope that was ok.

    Raven, Glad things are going well for you and everyone on the caregiving scale!!


  6. #6
    Moderator Obieone's Avatar
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    Perfectly fine with me Teena ! Carry on everyone!

    ~ 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 ..."
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  7. #7
    Thanks for starting this thread Raven. I know that the issue of caregiving is an ongoing and very emotional issue for my family, as it is for many other families. I find threads like this very helpful.

    Quote Originally Posted by Raven
    It is possible that I will be critized for having him become my official caregiver but this is what works for US.
    It bothers me that this kind of thing happens (criticism for things like care decisions). But I am going to be restrained and not go on a rant I agree with you 100% that the most important thing is that it works for you and your family.

    The reason I am glad you started this thread is that my family and I are struggling very much with the issue of caregiving by strangers. I have some very good agency caregivers. I am glad to have them and they are not a concern at all. But there have also been very problematic issues with some of the caregivers the agency sends.

    I always want to keep my family at arm's length because having them involved in my care seems to complicate our relationships. For me it is about independence too. I have a hard time feeling independent at all with them having to do so much and being involved in every aspect of my life it seems. I also worry about the effect it has their own lives, their jobs, their own families. I know they wouldn't do it unless they wanted to, so I try to let that go. But sometimes the issues with a few of the caregivers has been so bad that it really makes me and my family question how safe or desireable it is to have strangers caring for me. It is a big struggle to know what to do. I guess right now we are still trying to find the medium between family and agency caregiving that will work best. I am very glad you have been able to find what works for you and your family Raven. Kendall too. Having the worry of caregiving hanging over your head makes it so much harder to cope with the rest of daily life.

    I always feel bad when I am critical of agency/outside caregivers because I know there are many wonderful ones out there who are fully dedicated to the people they care for. The good ones are like gold and when you find them it is a really great thing. Unfortunately my experience so far has often been more negative than positive.
    Last edited by orangejello; 05-08-2007 at 12:12 PM.

  8. #8

    I do not know why we did not think of this sooner. It has always been a struggle for everyone's needs in your household to be met. This seems like the ultimate solution. Ideally this decision will strenthen the family and create a best case scenario. Who better than Nick? It has always been clearly obvious that Nick makes you a priority, and with this plan in place maybe it will bring a sense of relief to everyone including the little Isis.

    The way I see it, from far away there are several relationships that stand to improve. Mother - son, Grandmother -grandaughter, Father- daughter. For your family I like this idea. You will be healthier, Nick will be healthier, and Isis will be healthier.

    Makes me want to vist El Paso!

    Well done... your Mariquita

  9. #9
    I'm glad you started this thread, Raven. You always are so full of love, hope and optimism, so fair and balaced in sharing your opinions and thoughts.

    I'm thrilled you and Nick and Isis have what works for you, what is less stressful for all. It takes doing what is needed for each individual, for the family unit in whatever form or forms that is and isn't.

    I've had paid caregivers through an agency and I was ripped off. Had good jewelry stolen. It was awful. Really bad. For now, I do what I can solo, get help when I absolutely must for other things. It's what works for me, not necessarily anyone else.

    About to have a small amount of surgery. My parents will help me in the aftermath. They offered to come here to help (my apt.) or for me to go there.

    I'm going there for a number of reasons. 1) I think it will make it easier on them. 2) I love spending time with them and they with me. We not only love each other, we like each other, enjoy the company of each other. 3) My apartment would be totally boring for a month to six weeks of going nowhere, just being here. 4) It's more peaceful and serene in the mountains. Seeing nature all around blisses me out which I think helps with healing, is good for the soul. Taking my camera with me for when I feel stronger yet not quite ready to fly solo again here.

    Some people could never imagine spending that much time with their biological family. They might not make it a weekend together. That's neither bad nor good. It's just what is.

    We're not role models for how things can work, but what we do works for us.

    I try to be respectful of what they need and want. I do for myself everything I possibly can. I won't abuse their kindness and love in helping me in the coming weeks. They know this and I do, too.

    Those invisible yet necessary boundaries work for us and that's what this boils down to: what works for us, what works for you (collective you to mean anyone reading this).

    We each have to find our own ways with those who help us live as full and complete lives as we can.

    While we can learn from each other here at CC, I hope we never dictate to another what they should do because it's what works for us.

    I wish us each and all better days and much less stress.

  10. #10
    Thank you for your comments everyone. It is hard to have to deal with the things that are brought about with SCI and then the care that is needed is also so varied and complicated. I have found that so many quads here are so full of fight that I admire them for it. I really don't know if I were in that situation that I would be able to do the same as they.

    Coming to this site has taught me so much in many ways. Have been a member here for about ten years after managing to get my first computer. Most of my life I have had to deal with all this only in the AB world. Had only met two paras before finding this site. I learned from a special one who encouraged me to do more things and keep on fighting to be independent. But from this site I have learned a whole lot more too.

    Life and time in the SCI world has also taught me that we have to first and foremost find out more about each individual situation before we can say anything about it. At first, we all struggle to find our way to do things in a different way since things have changed for us. We also have to somehow cope with our loss(es) from an emotional/psychological point of view. We can get depressed and give up or we can fight to go on with life in spite of what has happened. To me it was very hard to come to terms with it all and I believe all of us feel somewhat the same way at first. I have found that time does bring some sort of coping skills in us so we can find our way in this new life we now deal with. Somehow we become like a chameleon to fit into things in our lives so we can survive in all the changes brought about. I guess it is the survival instinct that exists in all or most of us. Somehow we learn to adapt to the new things brought on.

    I think that each one of us has to find the way that will work for us individually according to our own personal needs and according to the things that enter our lives too. As I mentioned earlier, I was independent for most of my SCI years with the exception of the beginning years. Once I got rehabbed I did go out on my own and after getting married, had my children, raised them pretty much on my own. Things have changed for me now. Having to deal with diabetes, osteoporosis, arthritis, hep C and all the things brought on by these health problems have made my life harder to deal with. I still want to do things for myself even though it does take me longer to do them now and with a lot of aches and pains. My daughter used to call me "supermom" and now my son has to help me more and more with things. It is hard to accept this but I still won't give up. I still am stubborn and try to do things pretty much for myself or at least as much as I can do.

    I only hope that anyone who comes in these forums and asks for help, I can at least help them to find a way to solve or find the help they need with my answers. I hope that we all keep in mind how it has been for us many times before. Especially when newly injured, we are more lost and vulnerable. It is truly sad if we can't give them the help we have gotten ourselves at some time before.

    I hope all who have read or replied here have found a little bit of help on the road to continuing on with SCI life.

    Sorry for the long post. Am tired and getting sleepy from a long day and need to go to bed I think. Good night everyone.


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