Challenges with your primary Caregiver?

By jefff Latest Activity February 6, 2016 at 2:43 pm Views 1,052 Replies 8 Likes 2


Happy Saturday afternoon everyone,

So it's about time I "broach" this subject since I know there are many of us out there who may feel this way at times, hopefully 'less than more' if you know what I mean?

There are and have been many times over the past 15+ years that have caused me to stir emotionally which then leads to a physical exacerbation because in the world of MS, whenever we internalize our feelings, they eventually fight there way to the surface and become a physical issues more so than a mental one —- does that make sense?

I've been having challenges lately with my caregiver, friend and spouse regarding how and what we say both to each other as well as to others and it can really hurt at times…I mean it CUTS deeper than I ever imagined. There has to be a happy medium somewhere?

Is there anyone out there on the site facing these types of challenges whereby we can have an open and sensitive dialogue about these particular issues? I know you're out there, but just need a forum to speak in —- please know we're ALL in this boat together and we ALL need each other at times.

As unfortunate as it may seem, I and others NEED YOU now if you don't mind adding or giving me/us some advice on how to move forward because it feels like I'm stuck in cement with NO where to go, THANKING YOU in advance!!!


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Replies (8 replies)

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  • JadeK4142
    JadeK4142 March 4, 2016 at 8:44 pm   

    Jeff, you may think this is weird but it really works if you're both committed. I have often found myself in the middle of an angry discussion saying things I know I don't mean. I've always wished there was a rewind button on mouths. But that gave me an idea. I asked that gentleman friend if we could incorporate rewind into conversations. Either of us could say rewind and we would work our way back to where it stopped being a mature search for common ground and started being a hissing match. Rewind also means let go of the hurt, forgive the hurt and start over and do it better. it takes time to make it really work, but when you're both committed to a successful relationship, mutual agreement to stop, take a deep breath, calm down, let the hurtful words roll off, and try again makes many of the bumps smooth out.

    Example: I had always managed getting my fractious stallion out of the horse trailer myself. I tamed him — I didn't break him — with love and apples so when he got into that trailer which he hated, my voice could soothe him out of the trailer without anyone getting hurt. Enter big protective boyfriend who does not want me getting hurt. I smile and say I share that concern. That's why I'm on top of the trailer and the trailer is inside the corral before the pins are pulled. He says, no, you are not going to do this. I do not want you hurt. I smiled and said rewind, please? He stepped outside for a few minutes and when he came back in he said, I would really like to be on top of that trailer with you this time if you don't mind. I know, I worry and you're a professional with these animals, but the fact is, you tame, you don't break and that makes your horses wild animals. You are the epitome of love and gentleness. And I am the epitome of protectiveness and pushiness. Did I do better this time? I told him he did.

    Before it gets to snarling, a gentle request for rewind can change a potential fight into an open discussion.

  • Dr Gary
    Dr GaryCA February 18, 2016 at 9:19 pm   

    HI Jeff, I think your post is so insightful. Our emotions and are physical beings are so tied into each other. Body, mind, spirit. I know how hard it is to need to rely on someone else for help, I talk to my clients about this so often. And I know it hurts when the people we need can't be as helpful or supportive as we need them to at times, and the feelings that can come up. It's not an easy road for anyone, especially the person who is living with a condition like MS, and on that road every second of the day.

  • jefff
    jefff March 6, 2016 at 9:50 am   


  • jefff
    jefff February 23, 2016 at 6:59 pm   

    Thanks DrGary!!! jefff

  • JadeK4142
    JadeK4142 February 10, 2016 at 6:38 pm   

    Jeff, my caregivers come from the newspaper ads I run from time to time. It's a crap shoot. I've had some atrocious caregivers and two I reported to APS for physical contact of an intimidating nature, stealing from me, and no call no show. I can walk my house and see the family heirlooms gone forever because of the entitlement attitude of so many. But my tings are not what I'm about. My things get stolen but what really disturbs me is that I become so much less trusting in the face of it. My mother used to tell me that my biggest defect was that I trusted people. That always baffled me. I didn't see it a a defect. I saw it as a strength in me, that I could greet a stranger warmly and invite him in for a cup of coffee and a ham sandwich. Now I'm wondering if she was right. I've had more than a dozen caregivers over the last 6 years and I wouldn't give a single one of them a good reference. The one I have now, interestingly, has no medical training and no experience in this line, but she gets it. She understands when I'm struggling and she says, Do you need help? and I say, Well, I don't want to. She knows that I wish my hands would just do the job, but they won't so, yes, I need help, but I wish I could say no. She understood my claustrophobia the first time I turned to her in Walmart in utter panic. She knows that on ice or in wind, she has to hold me up even though I have the braces and crutches. And she has unerring sense of how important it is to me to be able to do as much as I can without help. She does not define my need. She simply fills it. This one I may keep. The rest I threw back.

  • Dr Gary
    Dr GaryCA February 18, 2016 at 9:15 pm   

    Hey Jade, just wanted to say hi. I appreciated the opportunity to read your story and learn more about you and what you are dealing with. I am also a trusting person. But I know how easy it is to cross over into trusting too much and being taken advantage of or, in your case, potentially harmed. It's a tough balance. But it sounds like you have not allowed your bad experiences to cause you to distrust everyone. And I am happy to hear you have connected with a caregiver who is really giving you the care and support you need and deserve. That's great. Thanks a lot for sharing this.

  • jefff
    jefff February 11, 2016 at 2:45 pm   

    Independence…Love It and Love your Care Giver!

    Thank You for sharing how you arrived at your experience, I'm VERY fortunate to have my wife take care of me most of the time when she's home and I have several neighbors who are aware of my circumstances and are willing to "jump in" at a moments notice.

    So thankful to them and my special wife, either way, your story sure does hit home and I'm still so very happy for you and the advice you gave me as well as any others who may pick up on your story, so I appreciate your sharing with all of us. Oh yeah, I meant to ask what the most frustrating aspect to "being down" was for you if you don't mind sharing? Mine was the one thing we all do every day, urinating! I now have to "self-cath" myself and while at first it was very painful (still is sometimes after about 3 months), I've gotten into a routine and find it to be very helpful since my nerve conductivity down there just isn't working anymore…oh well!

    Thanks again and PLEASE Take Care of yourself, jefff

  • JadeK4142
    JadeK4142 March 4, 2016 at 8:29 pm   
    Edited March 4, 2016 at 8:31 pm by JadeK4142

    Actually, you know, the most frustrating aspect of my dance with MS is that it is joining up with corneal dystrophy which means my cornea cells are dying which clouds my vision and MS is playing tiddly winks with my optic nerves, so I can't read books anymore. But nobody's keeping me down. I got a cassette to computer and cassette to CD converter and then a CD to DVD converter and I get books at Friends of the Library sales for a quarter and go home and convert them to CD or DVD books. I have 4 books, each of which holds 325 disks, almost full. So like my friend and I are saying even more often in writing Bug Stomping, you have to find your warrior and put it to work on even the smallest problems. Although I don't really think of losing my vision as a small problem.