• Sponsored Post

    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 11 replies, 6 voices, and was last updated 8 months, 3 weeks ago by DeAnn R.

    • Author
      Posts
      • #17830
        DeAnn R
        Keymaster

        Apparently an episode of Dr. Phil has sparked some controversy in the disabled community.  I have not seen the episode, but I guess he makes it very clear that with interabled relationships the able bodied partner should not take on the caregiver role.  From the sounds of it this couple had other issues, but this topic has stirred a lot of reactions.  Here’s a link to an episode of Squirmy & Grubs discussing their reactions to the show after turning down an invitation to be on the episode  https://www.youtube.com/watch?v=prjdlTVT5uk There’s even an Instagram movement using #100outof100 to dispute the episide.

        Personally I haven’t been in a serious relationship, but I’ve known individuals that have done this and are perfectly happy with their situation.  I’ve known others where it hasn’t worked out.  I think it really depends on your situation.  Since I’ve become accustomed to having outside caregivers I might be inclined to still rely on them for a majority of my cares, but I’m sure my partner would take on some of the roll.  Not out of obligation but because they care about me.  I can see where it could be awkward having to schedule others come into your home to do things your partner could just do.  But I can also see where it could become overwhelming.  As with anything I’m sure balance is key. My concern would be if my partner were injured or sick.  I’d definitely need backups.  Then there’s always the breakup factor to consider.

        Have you had experiences having your partner being your primary caregiver?  What would you say are the pros and cons?  We’ve touched on this topic in other forum posts, but let’s dive into the subject!

      • #17834
        DeAnn R
        Keymaster
      • #17835
        Kevin Schaefer
        Keymaster

        Yep, I saw this. Oy, I don’t even know where to begin.

        I think Shane and Hannah summed it up perfectly by saying that things like this are totally up to each person and couple. Dr. Phil’s pretentious “you have to decide between being a lover or a caregiver” line is complete bs. I’m not in a serious relationship, but I have friends who help me all the time, and I do things for them in return.

        Personally, I wouldn’t want my significant other to be my only caregiver, but I know couples who do this, and it works for them. It’s a personal decision, and I don’t need some bigshot tv personality telling people with disabilities what to do.

      • #17848
        Pamela Muhammad
        Participant

        This is a very important topic for me, because someday I hope to get married. And I thought about this over and over again I would like to have additional caregivers ,but I know that my husband he would have to take a part in  my caregiving! Because I believe that everything has to be balanced to be healthy. And I do know other couples  that are married and caregivers to their spouses and that is fine, whatever works for that person, I do not judge that. So I have to get these links and probably will be back with more opinion. Smiles 💖

      • #17873
        Ryan Berhar
        Participant

        I think this whole situation is unfortunate, because whatever merit Dr Phil’s comments might have had were lost due to their hyperbolic nature. Like of course 100/100 relationships involving caregiving don’t fail, however, I’d venture to say that the majority do. I mean, relationships often fail period, so adding a stressor like caregiving figures to lessen the likelihood of a lasting relationship.

        You also don’t need to draw a hard line in the sand between “loving and caregiving”. In their video, Hannah mentioned how under this stipulation, she couldn’t even feed Shane popcorn. This is of course absurd, and shows why Dr Phil is wrong. However, I believe it’s wise to establish certain boundaries. While feeding someone popcorn probably won’t stress a relationship, providing all the heavy caregiving tasks on a daily basis very well may.

        From what I understand, he also didn’t give the couple any advice beyond the disability. I’m sure there were issues independent of the disability that should have been addressed.

        I can say that if I ever have a wife, I wouldn’t  let her be my primary caregiver unless she really wanted to for some reason, because I just don’t think it’s a great idea. That’s just me though.

        Basically, I think Dr Phil could have provided wisdom here, but instead he made untrue, hyperbolic, blanket statements that ticked off the disabled community. Perhaps he was going for entertainment purposes, or maybe he’s just ignorant.

      • #17882
        Adnan Hafizovic
        Participant

        I hoped that Kelly Miller will comment these theme.Another good example of good relationship between person in wheelchair and healthy person.I also think that if I have a wife that wife would be my main caregiver.And I don’t see anything bad in that.I think Ryan until recently your main caregvier was your grandmother,like my main caregiver is my mom.And if my mom can be my caregiver,why would not it be a woman with whom she would be married?

        • #17905
          Ryan Berhar
          Participant

          For me personally, I just don’t think it’s particularly wise to put that kind of stress on a relationship. But that’s not to say that it can’t work.

      • #17888
        Kevin Schaefer
        Keymaster

        Good discussion here. This reminds me of an interview I did a while ago with an SMA friend: https://smanewstoday.com/2018/01/16/adults-with-sma-collin-pollock/?amp.

        For Collin and Kyla, they’ve made it work for Kyla to be Collin’s primary caregiver, but I think it’s important to note that they each carry weight in the relationship. Collin runs his business and picks up their daughter from school everyday, and they work together to manage their household.

        Again, I personally would not want my significant other to be my only caregiver, but it does work for many couples. It’s very much a decision you have to make with your partner.

      • #17899
        Pamela Muhammad
        Participant

        <p style=”text-align: right;”>To each’s own, as I stated in my previous commitment I personally would not want my husband to be my only caregiver,because I feel  that all couples in relationships need  some “me time”  or “alone time”! Because we would run each other nuts..lol ( or nutter..lol)) However whomever disagrees and believe the opposite go for it!! But I like my private time we’ll the little I have , being that I already have 24)7 care! I have to go in the room to get a break from them!!! </p>

      • #17901
        Kelly Miller
        Participant

        Okay, I guess I’ll have my say here. First, I haven’t responded, not because I didn’t want to, but because I haven’t been on here this weekend. Taking a little break from the computer to have some of that “alone time” that Pamela mentioned!

        As you all know, my husband (Jack) & I are in this situation where he is my only caregiver. I’ve mentioned before that he decided he wanted to do it because he didn’t trust other people. At the time that he made that decision, we were both working full-time, had very nicely paying jobs, and there was no feeding tube, no SPC, not so many meds, & no need for more care. Most people would say well, it would be under these later circumstances that you would need extra help. Yes, that’s true, but there is also another aspect to think about.

        I may be wrong, but most of y’all who have caregivers are on Medicaid. Am I correct? That makes a huge difference when you are talking about hiring someone to take care of you almost full-time. (I won’t even talk about the “100%” time because it’s utterly ridiculous to think that your spouse will not do ANYTHING for you that could be defined as caregiving.) Since the day Jack decided he wanted to do everything for me himself, I have had to quit working, he has had to work from home at something that really requires a person to be able to go out a lot, I’ve gotten to where I need a lot more care a lot more often, and my Social Security Disability benefits have increased to the point of knocking me off SSI & Medicaid. I don’t need actual nursing care, so that rules out Medicare. Because the cost of hiring someone who actually wants to do the job and can make a living at it is far beyond our financial capabilities, we no longer have the option of someone else helping out. Now, much like some of you, I have friends who will occasionally take me to the store or stay with me a little while when he has to go somewhere, but I don’t feel comfortable asking any of them to actually do a PCA job without paying them. Unfortunately, our current income is just slightly above the requirements for Medicaid but not enough to be able to afford any kind of help. Thus, we are forced into this situation whether we like it or not. I don’t think Dr. Phil has even thought about how someone would pay for this caregiving.

        Of course, an ideal situation would be where I get more help from outside the home so Jack could have less stress on him. We are currently considering moving away from Texas (where we moved before I needed so much care) and back to Atlanta where I have family who can help. Even occasional help would give him an opportunity to get a break, but we don’t live in an ideal world. We have tried to alleviate what’s on him whenever we can. We’ve thought about trying to budget something for occasional help, but that would cause us even more stress financially and create problems between us for that reason. Some of the worst times for Jack have been when I’m in the hospital because he’s very worried about me and not getting good sleep on the hospital recliner. During these stays, we’ve relied heavily on church friends to stay with me while he goes home to sleep/take a shower/hang with the dog. This respite does not cost us anything (other than my hospital bill), but we can’t rely on them the way we would a PCA under everyday circumstances.

        I guess my whole take on the situation is… You do what you have to do, and you make do with what you have. If I see Jack getting stressed easily, I back off the best way I can & try not to put any more on him. I also do whatever I can to help out in other ways. I pay all the bills and keep our budget in line. I make up the grocery list and now shop online so he can just go pick up the groceries without having to get out of the car. I figure out what meals we can have to keep him from having to worry about that. I proofread a daily devotional for him to make sure it’s grammatically correct and says things the way he intended. I make any kind of phone calls that are necessary for our household i.e. maintenance calls to the apt. office, dealing with Internet provider when the Wi-Fi goes down (that one right there is worth it to him!) I do whatever I can. That may not seem like a lot to Dr. Phil, and maybe he wouldn’t think those things are as stressful as physically caring for someone, but Jack hates doing every single one of them and would pay his last dollar for someone to take care of them for him. To me, that’s what a relationship is all about – give-and-take, balance, using your strengths where someone else is weak.

        • #17920
          DeAnn R
          Keymaster

          Thank you for chiming in Kelly. The financial aspect isn’t something that a lot of people consider. I think it’s one of those things people in general don’t think about.  Almost like we can wave a magic wand and have caregivers and the means to pay for them.  For married couples it’s even more difficult as with Medicaid they consider household income correct?

          One major issue of the couple on Dr. Phil, in my opinion, was a lack of communication and respect.  As you said when you see your husband getting stressed you try to dial it back a bit.  Plus you know what you contribute to the relationship.  Sometimes I think some people with disabilities don’t feel they can contribute.  We can, it’s just may not be in the traditional ways.

          As with any relationship there’s going to be bumps in the road.  With faith, love and a little understanding I think most couples that are meant to be can get through it no matter how they’ve decided to have their caregiver arrangement.

      • #17910
        Adnan Hafizovic
        Participant

        Of course it is stressful for a life partner to be a caregiver for 24 hours, that this person should have a little freedom, rest and therefore it would be good to have an additional carer. I am lucky that at this moment I do not need care for 24 hours. But Kelly again I liked to have a life partner like yous, he shows it with all attention how much he loves and respects you.

    Viewing 9 reply threads
    • You must be logged in to reply to this topic.

    ©2019 KLEO Template a premium and multipurpose theme from Seventh Queen

    CONTACT US

    We're not around right now. But you can send us an email and we'll get back to you, asap.

    Sending
    or

    Log in with your credentials

    or    

    Forgot your details?

    or

    Create Account

    Copyright © 2017-2019 All rights reserved.