Real Question

Only honest answers please, I get enough bullshit to disdain it here. (Most of the time 😉 ).

Which is worse, having a severe disability, or caring for someone with one?

In other words:

Wiping someone’s ass, or needing someone to wipe yours?

Being in constant pain, or the helplessness of watching someone you love endure constant pain.

Moments when you wish for death…I guess that applies to both caregiver and the invalid.

14 thoughts on “Real Question

  1. I have never really thought about being in the situation you posed in your question. I believe the person with the disability would be the one who suffers more. Not only are they having to accept and deal with the physical limitations their body has imposed upon them, they also have to endure the embarrassment of being cared and have tasks completed for them which they can no longer perform themselves.

    Now this by no means undermines the caregiver and their awesome responsibility; but in order for them to perform the “personal” duties of another, we can only hope the caregiver has their health and is not limited like the person they care for.

    • It is a difficult situation for everyone involved.

      There is a moment as a disease progresses that you fully realize that life will never be the same as it was before. I think this realization can bring with it many feelings of anger, despair, and hopefully courage for the days to come.

      Isolation on the part of the wounded and pressure on the caregiver contribute to the difficulties. Not to mention the grief of losing the person you once were, and all the medication, side effects, sleep disturbances, etc. it is no wonder death seems like a viable solution for many people in this situation.

      That said, some people with disabilities and those who care for them have the most impressive courage and strength I’ve ever seen, and many have great attitudes (although everyone’s entitled to a few breakdowns every now and then).

  2. I think this is by far the most challenging question I have seen in a long time, there are really strong cases to be had for both cases to be the hardest.

    I think it depends on the severity of the disability and the length of time the person has had that disability, also it depends a lot on the carer and their understanding of the disability and how thick their skin is.

    I have seen carers that have been treated really badly by the person they look after and are not at all appreciated, but also can’t get help and support from local authorities, are at the end of their tether and don’t know where to turn for help and advice. I have also seen carers for people with very challenging disabilities that make it look so easy because they are perfectly in control and nothing phases them.

    I have seen many different and varied disabilities whether physical or mental and the way that the sufferer copes is so varied. Disabilities affect different people in different ways, people with the same level of a disability will cope in completely different ways.

    So my answer to the question if I had to pick one or the other would probably in most cases be the carer. I think that the difficulties faced by both the disabled person and the carer are fairly evenly matched but for the carer there is also the ability to affect the outlook of the disabled person. I think the courage and drive of all the athletes that you see at the Paralympics is absolutely amazing but how many would be there if they were cared for by someone who couldn’t be strong and cope with everything that the disability threw at them. I know that you have to have an immensely positive attitude and drive to succeed to get to where they are, but a carer can have a lot of influence on that.

    • Definitely true. I think being a care-giver is incredibly difficult, and the extent of disability definitely matters.

      As a disabled person, I feel incredibly guilty for “making” the life of my family so difficult. I hate that my kids haven’t done a lot of the stuff I enjoyed as a kid, because now I can’t do it. I hate the fact that my husband can’t have a sexy wife who can walk and dance, and everything I can’t do. I hate that he feels extra pressure to provide and take care of all of us.

      At the same time, I didn’t choose this, and every day is difficult and often humiliating. Even small things like laundry, or putting a glass away are a challenge. I’m constantly bombarded by realizations of my limitations. My anger and resentment can be fueled by the pity I see from others all the time, as well as the resentment my caregiver demonstrates at times.

      It is exhausting. I do try to be happy, try to do what I can, and be what I am, but sometimes the defeat is overwhelming. I take my frustrations out on those I love most.

      At times I wish I was in a nursing home so I wouldn’t be making my caregivers life so damn difficult.

      • It is incredibly important to accept that there are times when living with your disability is horrible, at those times you need to be able to look at the positives around you. You have kids which is a blessing in itself and just because they can’t have all the experiences that you did growing up doesn’t mean that they aren’t going to have different and equally rewarding experiences.

        I hope that you can keep positive and that you keep posing challenging questions on your blog, I will look forward to reading more.

  3. I think it’s a damn fine question with no good answer, and is situation dependent. I can feel yer pain! Luckily I can take care of myself pretty good, but living with never ending pain 24/7-365 – with the promise that it’s gonna get worse . . . hey, that’s my boat, LOL. And I find myself sometimes wondering: why DO I bother going on? Wouldn’t it be better (and easier) to let my wife collect that 50K insurance policy? I don’t know. Curiosity keeps me going more than anything else, I reckon.

    Caregivers. Another tough question. At least once you are gone they can continue to go on – without that burden. But then there’s the loss. How does that affect one? Having loved and lost a ‘burden’ isn’t a burden at all when you’re in love. Think “children”. What a disabled group *they* are! Butt-wiping, puke, diapers . . . and yet we do take care of them. 😀 And so: does it matter what age you are?

    You come up with some good questions, Hobbler, but I think like me curiosity drives you on. What lays beyond the next day? Eh? Gonna wait around to see. 🙂

    • Curiosity is a life saver for sure. Have you seen the video for the song “say something” I’ll post it, but it has a man grieving as his wife dies. Love is a powerful medication for surviving the caregiving role.

  4. I think it’s worse to watch someone you love suffer! I am in the unenviable position of needing care now & I hate having to ask for help. So when I got my COPD diagnosis, hubby & I sat down & decided who would do what, how much I thought I could handle, my signs of distress to watch for, etc. We discussed a plan for my future care & medical interventions. It was hardest for me to call my daughter & tell her I did not want extraordinary measures used after a certain point & my plans.

    • I’m glad you and your husband are talking and planning for the future. It is very hard on both caregiver and the one with the illness. I think the embarrassing parts of a disability are the worst. That and the cognitive stuff. There is something so horrifying about watching yourself lose basic abilities.

  5. I guess it depends… on how much you love the person, how old they are, how involved you are… I would rather be sick than have my kids go through it… but an elderly person, it is a little more expected and might not last as long. Would your parent want you to go through it for them?

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