Sometimes I momentarily detach myself from my situation and think “Damn, this guy sure asks for a lot,” as if I impose an insane amount of caregiving requirements. I get sucked into that thinking and feel like the most selfish person. I know I’m being a bit harsh, so I do cut myself a lot of slack. After all, it’s not like I’m a healthy, bored suburbanite constantly asking for help or unloading my personal problems on other people without reciprocation. Instead, I have to rely on other people to do just about everything for (or with) me because I’m sick.
It’s easy for a healthy person to look at my life and say something dismissive like, “Oh, I bet he’s glad to not do laundry,” but that’s just not true. I used to love doing things for myself, even mundane or laborious chores. I loved doing dishes and cleaning surfaces. I even sort of enjoyed doing laundry. And perhaps now more than ever I wish I could do those things. I wish I could feel the warm water flow over my hands as I wipe down a plate with a sudsy sponge. I wish I could bury myself under a pile of warm laundry until the heat dissipates and it’s time to fold my clothes. For my entire adult life, I’ve had a method — a routine or process — of doing these things and many others. But all that went out the window when I could no longer do them. Inevitably, that’s when things changed.
My Way Meets The Rigors of Caregiving Requirements
Now that I rely on caregivers to do things for (or with) me, autonomy is but a faded memory, a blissful part of a life lost long ago, or at best, a sliver of my former independence. Perhaps that’s why doing things on my terms has become so important to me, it’s a small slice of normalcy and control in a situation of which I have neither.
The downside is that my caregiving requirements often become more difficult for my caregivers. I get so wrapped up in doing things my way, as if I’m still completely autonomous, living my best life, doing things on my terms. I have engineered most aspects of my life to fit my disabilities. I have a Ziploc bag beside my bed because I can’t walk over to the trash bin; I drink from straws because I can’t lift the glass to my mouth; I use a dim flashlight because a desk lamp or overhead light is too bright. The list goes on and on, but the common denominator is that I have carefully crafted these things to fit my preferences while I’ve been sick.
The problem is: There are few instances over the last three years in which I’ve done anything substantial by myself. I need help doing most of my daily tasks, even the ones I have so carefully tailored to my current lifestyle and preferences.
So, when I find myself completely immersed in whatever I’m doing, I eventually snap out of it and remember: Oh hey, there’s another person here, someone helping me and we’re supposed to be working together. But I don’t want to work together, not on things I’ve done alone my entire life — bathing is not a team sport, eating is not a partnership, and brushing my teeth is not a meeting of minds.
But for me, nearly everything I do has to be collaborative. I have no choice, at least for now, until I get better. Otherwise my needs won’t get met.
To me, asking for help has always seemed like eating food — if you don’t do it life will be difficult, but if you do it too much people will start to judge you. And if you’re like me, you’ll start to judge yourself.
I judge myself every day for asking for help doing the simplest tasks. Yet, there is something inside of me, something engrained deep within my psyche, that insists on doing things my way, even when I’m getting help from someone, who undoubtedly has their own way of doing things. I suppose this is an issue because I have paid caregivers. I’m paying them, so I feel entitled to do things my way. But, at the same time, I’m not a tyrant. I would like to be open to the input of others. It’s just that I never expected to have to consider someone else’s opinions and methods while performing my most intimate tasks, things that most people do alone.
This is where my caregiving requirements get especially difficult. I’ve grown accustomed to asking people to make me meals the way I would have made them prior to losing my ability to do so. And I’ll ask my caregiver to put a specific set of sheets on my bed, but I begin to worry about this dynamic when I find myself micromanaging, usually to the point of exhaustion. Why do I care so much about how things are done? Do I actually care or am I just bored with such an uneventful life? Does it really matter what sheets are on my bed?
These things aren’t going to make me better. Sleeping on my favorite sheets isn’t going to miraculously bring me back to health, using coconut oil instead of canola oil isn’t going to cure my illness.
For this reason, I worry that my delegating is too much — too much for me and too much for my caregivers. It’s exhausting to micromanage my life, for everyone involved. So for my health’s sake and the sake of the people helping me, I should probably knock it off a bit. But it has become a matter of principle for me: Because I can’t do things on my own, I want to do them exactly how I would have done them had I not gotten sick.
But sometimes I’m so particular and neurotic about the way my life is orchestrated, it often feels like I’m being selfish. Although nobody has told me directly, I’m sure the people in my life have noticed. Maybe they don’t consider me to be selfish, but probably annoying at times. Awhile ago, I overheard someone ask one of my caregivers about the things I ask her to do. I forget the exact question, but she replied by saying, “He’s very particular.” I can’t argue with that, but my rationale runs much deeper. I am the way I am because of years of fighting for my health. I am the sum of my life’s experiences and many of those experiences have been a struggle. So sometimes I need to do things illogically because that’s just how I’m wired.
About a year after I first got sick, I was searching for answers to my poor health and needed help getting to a doctor’s appointment. I lived with two roommates whom I was fairly close with and could have asked for help. I’m sure they would have gladly taken me to the doctor’s office, but because of pride and a fear of vulnerability — perhaps not wanting the people I lived with to know how sick I was or simply not wanting to inconvenience them — I couldn’t bring myself to ask my roommates for help. But also, I felt like shit, physically, and I was afraid. I didn’t want a friend to help me, I wanted, perhaps even needed, family. So instead of doing the logical thing, asking my roommates for help, I asked my dad to drive three hours to take me across town to see the doctor.
I was very grateful he did that for me, just as I’m grateful for all the help I’ve received from other people over the years. I know there will come a time, and to a certain extent that time has already come, when I can no longer rely on these people for help. It’s scary to recognize that this is the case, and to not know what will happen in the future. All I can do is hope things get better, not worse, and that just how I’ve adapted to my current situation, I will figure out a way to get my needs met in the future. Though, I may need to be less particular about how things are done. So it goes.
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I’ve noticed getting overly caught up in details when I’m feeling especially vulnerable and “needy”. Instead of thinking of meeting a need, I get caught in the trap of “I used to be able to do it and so it needs to be done that way” and “if I ask for help that comes across as needy, instead of in need”. That distinction has been a very hard perception to change in myself and that need to keep things the way they were from “before I got this sick” are so incredibly difficult to handle. You made a big first step in recognizing it!
Definitely! It’s hard not to be stubborn when it feels like the way things were is slipping away from you.
Having been in the role of a caregiver, between a child and aging parents and watching them negotiate with others who care for them, you have really hit on that delicate balance between autonomy and the need for help. What does seem to be a common factor is that we all long for is control – especially when we’re afraid of what we’re losing. Control sometimes comes in the form of trying to keep things the same, because sameness is comforting.
There’s something to be said for accepting, as human beings, ill or aging, that the ground is constantly shifting underneath our feet and the harder we hold on, the less balanced we become. I think about that a lot ever since reading “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers” by Toni Bernhard. It’s human nature to want that control, though, and a challenge to adapt our thinking otherwise. Your self-awareness is right on point.
Hi Michelle. Thank you so much for sharing your thoughts and for your generosity 😉 I love your blog by the way. Especially your bio, very clever and well written. Control is such a hard thing to let go of, particularly when we’re forced to. I often find myself trying to control things I really have no business controlling merely because they’re the only things I can control and are projections of my loss. For example: I can’t control my health so I spend far too much energy and time arguing about politics. I would definitely like to let go more. It usually takes me feeling the worst physically before I really just surrender to my circumstances. Thanks again for your thoughts. Let’s keep in touch.
You think you’re at ground zero for so many things, and then you find out that they can be worse.
Priorities are important – I care about some things much more than about others. As long as laundry detergent with no fragrance is used, I don’t care how my daily pj-type onesie is washed. She actually folds them better than I would bother.
But other things, well, she doesn’t do everything the way I would, and I have corrected some and not others.
I’d think your sheets WOULD actually be important – you spend a lot of time with them. If they are not the softest, it hurts.
Maybe explain the difference – and say, “I really need you to do X my way,” and then make a big deal about the things you don’t care about.
Dunno. There are no courses we’ve taken on how to be sick.
Hi Alicia! That’s a good point. We really don’t know what is rock bottom. There has been so many times that I’ve thought a given moment was rock bottom. For my sake I really hope rock bottom is in my past but it’s impossible to know. Thanks so much for reading!
I have too been called particular … and no one understands all you give up having caregivers … I’m been blessed w those that we are a total team and lucky that I don’t need any personal hygiene help … but no my eggs I don’t care how your children love your eggs – I would like you to learn how I eat them .. if the biggest of your problems is my house is so cold omg put on a god damn sweater at least you’re not struggling to not get light headed .. I explain to caregivers you are essentially me bc I can’t be – and those that get that it isn’t complicated or taxing – it’s respect … those that want to tell you how they do it – well you’re in my house I’m 45 I’ve got reasons as I’m too tired to explain to you why …my best caregiver and I have labeled those the “why don’t you …” or the “welll have you tried “ umm yes Sherlock thanks for the advice but this isn’t our first rodeo this is all carefully crafted after a decade of adjusting … you are not here to reinvent the wheel … you are the wheel. Thanks for sharing Jamison – I understand it takes some caregivers a bit of time to understand our nuances are our control – but after a few times of gentle reminders it normally takes one breakdown and mostly it will click … if the job is caregiving there needs to be a mindshift that we are not children we are not elderly w dementia … if you want to provide care just please hear me…
I find caregivers jobs to do exactly what you need them to. That’s why you pay them, to do things you need and want. I understand the feeling of wanting to do for yourself. Right now, you need the help. Maybe when you get better, you can do everything for yourself again, just don’t push it. It takes time. Let them help you and keep telling them how you like things because otherwise, how will they know? I’m sure you are very polite too so don’t fret too much.
Thanks for the encouragement! I appreciate your kind words.
I am nowhere near as sick s you are Jamison. I do have post exertional malaise along with CFS and Fibromyalgia. I believe I am much older than you – almost 70. I have a volunteer who helps now and then but I try not to call him very often. Instead I just let things go. I hardly ever clean, except for the bathroom. When it gets to a certain point I will call him and he will go over the apartment. He likes to talk while working which is okay though I get exhausted quickly from having to follow the conversation. He will be moving out of town soon and my case worker wanted to know if I wanted a new volunteer. I told her I’d let her know when he moved.
I rarely ask friends for help. They too are getting older. Same goes for my remaining family of one sister. Part of the reason I don’t ask has to do with how much being around people exhausts me. There is a grocery store one block away and that helps. I only go to the grocery store, the library and various doctor appointments. There is a free service in my town for rides to doctor appointments. That is a great thing. I have lost the energy to go anywhere else or maybe I’ve lost the motivation. Probably both.
I spend my days reading. I am grateful I still have good vision. I watch a movie at night. I am thinking of just buying finger food as I just don’t want to cook anything nor clean dishes. I have lost interest in meals that require preparation. I have even lost my appetite somewhat. I bought a bag of trail mix a few days ago. It’s just fuel. The crazy thing is that if the researchers are correct and my cells can longer manufacture much energy, about 10% of daily needs I read, why would I need to eat very much anyway?
Compared to you I can still be mostly self sufficient for my basic needs but I can also see that not too far down the line I will be in a similar situation as you. I think I will have to just let go of the notion of having things my way. I will be dependent. Independence may be the hardest thing of all to give up. I encourage you to hang on to as much independence as you can. It’s a matter of principal and self worth. In the meantime there is no fault in asserting your wishes and desires.
Pat
Hi Pat, thanks for your words. I will always maintain as much independence as I can, but often times that means using my energy to do small tasks like reaching for something or brushing my hair which is exhausting and doesn’t really matter except on principle. But baby steps I guess.
Apropos of nothing, I popped open the May/June issue of “Writer’s Digest” … and there you were! I thoroughly enjoyed your article. Thank you for sharing your experiences with all of us.
Hi Sharon, Oh cool, do you subscribe to WD? I’m glad you read it, I appreciate that and your kind praise!
I’m so moved and touched by reading your post 💙
Seems like looking at me in a mirror.
I’m tetraplegic since the end of 1995 and I feel and I know exactly your mood.
I have nothing to add actually. I only wish to thank you for having described so good the feelings and the thought of someone who needs help and always will. Just like me!
I’m going to reblog your post and provide a translation into Italian.
Thank you again and again!
Hugs from Italy
Vicky
🌸🌸🌸
Reblogged this on Vincenza63's Blog and commented:
Amici miei,
vi invito a usare il pulsante dedicato al traduttore e a passare qualche minuto leggendo questo post estremamente realista e per nulla vittimista.
Io, da tetraplegica, mi ci sono rispecchiata.
Mantengo intatto il mio desiderio e il mio impegno per conservare la mia piccola grande vita indipendente.
Esattamente come il blogger Jamison!
Una dedica, un programma di vita in musica. Sempre Vicky <3
https://www.youtube.com/watch?v=M90BHwNXn-0
https://www.youtube.com/watch?v=PP8HO9TGkbw
To stop fighting for input into your care and passively accept every detail of how your carers care for you, is the same as giving up. You are an individual and don’t let them forget it, while bearing in mind that they have a schedule to keep. I guess a bit of compromise doesn’t hurt. …Oh hell, I really mustn’t complain about doing the washing-up anymore!