31 March 2011

Sharing the Pain

Many of the websites I visit and the blogs I read are MS-related. Most of the time, I don't find them all that depressing. For one thing, a lot of the time they're not about MS. These people do have lives, after all. But even when they're writing about MS, reading them doesn't usually make me feel depressed. Yeah, having MS is crummy and I'm sorry that anyone has it. I wish I didn't have it myself, truth be told. I don't like reading that anyone's having a flareup or that their symptoms are getting worse. It might make me feel sad, but not depressed. The other day, however, I ran across a blog that I found profoundly depressing.

It's written by a 19-year-old girl who takes care of her mother. The mother has MS, and is apparently pretty seriously disabled. The girl is torn between loving her mother, and hating having to take care of her. It was not easy reading. It left me feeling really depressed.

You see, everything she has to do for her mother, Scarecrow has to do for me, and more. How could he not hate it?

Thinking about it, I realized I mostly avoid reading caregiver blogs. It's so hard for me to put myself in caregiver shoes, to imagine doing that job. I don't know how they do it. It's just too hard, and it never stops. It's easier for me to deal with having MS myself than it is to think about what it does to my family. I have no choice, after all. They could walk away, but they don't.

I've tried to avoid having Tuffy take on caregiver chores, to the point of hurting her feelings sometimes, I think. I don't want her to feel that she has to stay here and take care of me, instead of living her own life. It's a luxury we have because Scarecrow takes care of me instead. If it weren't for him, my daughter might be the angry young woman writing that blog. Hating herself, for hating her mother.

So, there's that. It took a serious dose of old-timey music, a couple of books with absolutely no edifying content, and some really stupid movies to restore my normal grumpy, cynical outlook on life. Sometimes it helps to share pain. Sometimes shared pain just makes more people hurt, and what's the point of that?

Tomorrow is Scarecrow's first day at Gloria's Books and Adult Day Care. The adventure begins…


  1. some posts can really get to me too. I am glad that KRP and I (and I suspect you and Scarecrow) communicate. Although I do wonder if she shares when over the edge and ready to explode.

    I do not have a daughter or son to worry about being a burden for. So not sure how much harder that would be to think about.

    As for me I believe the Caregivers have the worst end of the stick. I am not sure I would be able to take on the role myself.

  2. I fear my words could be misconstrued, but sound judgement isn't always one of my strengths. So, I'll continue...

    While caregivers all share certain similar issues, I do believe that the young woman's situation and yours are somewhat "apples and oranges".

    I am not minimizing how huge Scarecrow's commitment and responsibility is, but he's your life partner and chose to create a life with you. And, he demonstrates that commitment daily...hourly. No, he didn't sign up for MS but he did sign up for you. The young woman is supposed to naturally want to be moving from the nest / Mom to create her life. I just see it as being a bit different.

    I remember reading a blog by a middle-aged fellow who had moved home to assist his aging parents with his sister who had ALS. The parents starting having health problems requiring assistance and the sister, while very affected, was living well beyond expectations for ALS. Meanwhile years later the fellow was candidly venting his frustrations about feeling trapped, financially ruined, etc. A young mother with a severely disabled child responded in sunshine fashion chastising him about how life with disability didn't have to be so dark. I thought she rather missed the point. And, so did he.

    So, there are my thoughts which may be totally off-base but that's what jumped out at me. Good luck at the new bookstore!


  3. Zoom - I reread this today. I still think it's and apples and oranges things but quite possibly I also missed the point. Sometimes I think talking about these heavy things in this flattened out medium that doesn't allow for nuance, clarification of complexity, interactive sharing, etc, isn't the best.

    In any case, I didn't, and don't, want to minimize Scarecrow's awesomeness or your response to contemplating the family caretaking burden.


  4. Donna, I don't think you missed the point at all. In fact, you may have put more thought into your response that I did into the original post –– thanks for that. Family caregiving is a tough subject, no matter who's doing it or how they got stuck in that situation. I'm glad you were willing to brave the awkward medium and wade into the conversation.

    Jan, I'm with you. I think caretakers have a harder job than the caretakees.