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From a Different Perspective: Caregiving

Each of us filters information through our previous life experiences. Through those filters, we evaluate comments made and inferences perceived and eventually make conclusions based on those filters. We also tell ourselves stories about what we see and hear based on those filters and it’s through those stories that our emotions are generated.

That being said, each of us will read a blog and get something different out of it. We will pass judgment on the writer and the content based on where we are in life and what we believe to be true at that moment. As I have been writing my columns, I have had a growing concern that what I share may be misinterpreted or may even cause pain to readers who take in what I share from the point of view of someone who has MS. When I share my “story,” it’s from the point of view of the person who cares for the person with MS. Essentially, I have MS by association. I do not have the muscle weakness, the spasticity, the loss of functioning, but I have equal impact as my husband’s full time caregiver. I do not for a minute think I have it worse than he does. I could walk away from this situation (though I choose not to), but he cannot. My image of myself, my career choices, my plans for the future are not made based on my own limitations but every choice I make, I make with his limitations in mind.

I pledged to Lynn before God and our families that I would love and care for him in sickness and in health. I meant it. I never considered leaving when his condition deteriorated to the point it is now. I want to take care of him and I put his needs first in everything I do. I feel it is a privilege to be able to give myself over to the care of my husband whom I know would do the same if he could for me. However, that being said, this life is not easy. It’s incredibly difficult. I, alone, am responsible for ALL his needs. He only has use of his mind and his left hand and arm (and that’s before lunch each day; by lunch time, he can’t use them anymore either). I have people who come in and help me for a few hours during the day so I can continue to work full time from home. However, they do not provide for any of his physical care other than to feed him. Don’t get me wrong. What they do for him saves me a lot of time and allows me to focus on work during normal work hours rather than late at night; however, if there is a problem, I still take care of the fix.

Though, I have pledged to care for Lynn and do so willingly, I get frustrated. I get angry. I get depressed and overwhelmed when he feels bad and demands more attention that I have the energy to give.  When he asks me to adjust his inflatable cushion so that his bottom doesn’t hurt, he expects me to know, I guess by instinct, whether to add more air or take more away. He can’t tell me what to do. He looks to me to figure out everything he needs and while I understand that after he’s sit for a long time on a cushion till his bottom is either numb or painful and he can’t “feel” it anymore, it’s frustrating to be called away from cooking or from participating in a conference call while working so that I can provide a fix that I don’t know exactly how to provide. I am very adept now at catching him while discussing highly sensitive issues during a conference call and balancing the phone with my head while I use my hands to do a sterile insertion. I often have food cooking on the stove, while I’m scratching an itch somewhere on his body and formalizing a response to an issue to give when I can get back to my email. I get angry when he sits there watching TV while I administer to his care, I finish up to leave with my arms full of supplies, and he says, “Oh, before you go I need…” I get depressed when I ache all over because I’m coming down with something, I’ve had 4 ½ hours of sleep, and still have several jobs to do and all I want to do is lie down and rest but I can’t. I get depressed when everyone from work gets to go to conferences or gets “atta boys” for what they do and I don’t because I have to stay home, out of sight/out of mind, and I feel unappreciated. I admit, I do a lot of “poor pitiful me” self-talk before I even realize what I’m doing which is unhealthy.

If you are a person with MS, the last thing I want to have you think is that your caregiver resents you or that you are harming them in anyway. The vast majority of the time, they want to do what they are doing and even though caring for you may very well cause them health problems in the long run, they want to do it. They wouldn’t have anyone else do it for them apart from a short respite. But as a caregiver, we need to be able to share with other caregivers, like us, who occasionally get down, always are tired, and regularly get overwhelmed with responsibility. What I write is written for them; the other caregivers who need someone to share their experiences with. I appreciate that you are concerned for me when you comment on a blog that I should consider therapy and that my view point is very negative. I admit sometimes it is and maybe I could use therapy but that won’t change reality and the reality is I have too much to do and not enough time to do it and so does almost every caregiver I know.

But, I don’t regret my decision to care for my husband. I would never want to hand over his care to anyone else. I want to direct his care because I know I can do it better than anyone else; it’s just that sometimes a break would be nice (but only if he wasn’t harmed in the process). Thanks for understanding.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • mario lobo
    4 years ago

    My wife’s MS hasn’t progressed to the point that Lynn’s has. With a lot of planning, preparation and communication systems in place, I am able to work outside of the home. Nevertheless, I really empathize with you. I have no time for myself, and most of the people around me who are living their non-caregiver’s lives, just don’t have a clue. When I hear one of my colleagues talk about going somewhere on his day off “to kill time”, I want to grab him by the collar of his shirt, shake him, and ask him if he realizes how lucky he is to have that kind of time, ANY DISCRETIONARY TIME, for that matter, to himself. Instead, I take a deep breath, smile, and tell him that I hope he has a good time.
    Once in a while, when my wife is going through a bad spell, a friend will ask about my wife and then ask me, “And how are YOU doing ?” It means so much to me when people realize that it’s not all sunshine and roses for the “healthy” caregiver and that they make the effort to acknowledge that the situation might be taxing on me too. Kind words and thoughtfulness are very powerful! I feel good just thinking about that 🙂
    Hang in there Donna, and please keep blogging! Your writing helps a lot of us feel like we’re not alone in this caregiving adventure.
    Mario

  • Donna Steigleder moderator author
    4 years ago

    Thank you Mario for sharing that account of how caregiving affects you. I’m right there with you. I get so jealous at times when people talk about going out to eat or to go to a movie. There’s no way we can do that or can I do it alone. Sounds like our situations are very much the same except I think going into work each day away from home would be more than I could handle. Hang in there and thanks for your words of encouragement.
    Donna

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