A few days ago I had some very bad episodes of fainting and tremoring / seizing. It was a really rotten morning, complete with two men trying to lift me to get me to the car and me completely blacking out in the most dramatic of ways. It scares everyone to see me go completely limp, arms swanned out, head back… like a rag doll.
Good thing you aren’t really tall and weigh more than 7 stone, or I’d get a herniated disc, darling.
Following a recovery period, I felt well enough to try to walk to the car, to get to where we were supposed to be hours ago. But those around me felt like this was a bad idea and urged me to lie down and rest more.
After repeated requests to try walking, and getting told no over and over, I figured I’d just frightened them all too much and I’d need to show them I was capable. Or, at least, capable enough to get to the car. So, I got up, tested my shaky legs and showed them I could walk. However, I did not convince anyone and they continued to insist I lie down and rest.
No really. I can walk!
Can’t you see I’m totally ready to run a marathon?
Still sure they were just frightened I decided to just walk to the car myself. I thought that would leave no doubt that I was really ready to go.
I made it to the car. But! It upset my husband. He felt I had been stubbornly dangerous and inconsiderate of his feelings. After all, he was trying to care for me, to protect me, to keep me from worsening symptoms. Why couldn’t I just rest for another hour?
What on earth does she think she’s doing?
I don’t know, but it’s kind of painful to watch.
I was shocked and felt terrible. It was not my intention at all to trample over anyone’s feelings, and I am very appreciative of anyone willing to put up with me, let alone care for me. So I tried to explain: I was just following standard protocol. He’s often away at work when these sort of things happen so perhaps he’s not as used to them as I am.
I told him about having an episode at a big box store: When I went to the store several weeks ago I found there were no beep-beep carts available. I only had a few things I needed, so I leaned on a regular grocery store cart and tried to get the items on my list.
My body had other ideas though, and soon I found myself shaking violently on the floor. Despite the uncomfortable and embarrassing surroundings, I did my best to rest, get some salt water in me, and embrace the cold, dirty linoleum for a while. As soon as I felt able, I got up, leaned on the cart, and got out to the car. I rested again for 30 minutes in the car, and drank more salt water (drink of champions). As soon as I felt like I could get home, I went.
This story was not helpful. All my loved ones hear is: Holy crap, she should never go to the grocery store again.
Don’t ever do that again, you hear me? Never!
But we really needed cat food, and we were out of bananas!
I can understand that response. If someone I loved was seizing on the floor in aisle 6 at the grocery store, I’d be offering to run all their errands, too. However, I don’t think I can adequately explain how not trying feels. Like you’re giving up. Like this thing has won. Because POTS gives you opportunities TO try. It gives you good days or good minutes that feel miraculous. If you don’t seize those moments to feel alive (even at risk of failure!), depression sets in.
So all of this begged a question:
What is the role of the caretaker? Are they just there to help you try to do things that they feel are foolish or unnecessary? Do they not get a say in what they think might be best for you? If you and your caretaker disagree, does the disabled one always win by default because feelings?
It’s a really good question, and I’m afraid I don’t have a good answer, though my husband and I had a good long talk about it (and nobody’s upset or hurt anymore).
Tracy had been planning for YEARS to climb an insane mountain for her 40th birthday. When she injured her hip and found it would not heal, she still had hope that she would be able to climb the mountain. She even tried to make plans with us, because it was so happening.
We, her friends, felt like this was a very bad idea and told her as much, but still, she intended to try. Her diagnoses and injuries continued to pile up including Ehler’s Danlos / Hypermobility Syndrome type III, and POTS. The EDS made her a very bad candidate for surgery to repair her labral tear in her hip socket and she developed an allergy to the prolozone injections that were helping. It became obvious to us that climbing her mountain was not only a bad idea, but a truly dangerous, even impossible one.
Alfalfa and Buckwheat are like, “Stop, don’t climb that thing, lady.”
Though it was very hard for her to give up this dream, she eventually faced facts (broken foot, more injuries, etc.) and realized it wasn’t going to be possible in the immediate future. I’ve learned valuable things from this:
- Climbing the mountain was deemed foolhardy / impossible / dangerous many months before Tracy arrived at the same view. It was easy for those of us who were healthy (me included at the time) to roll our eyes and be all, “Oh sure, uh huh, that’s so cute of you.” When in reality the letting go of the dream and the intense desire to make it happen was extraordinarily difficult.
A caretaker needs to appreciate the strength of the desire to do the thing. Even though NOT doing the thing is the obvious and rational choice to the caretaker, it will take time for the disabled person to see it in the same light.
- If Tracy had determined to try to climb her mountain anyway, we would not have been able to stop her. She would have gotten herself there with or without us and given it her best. Maybe she would have pulled it off. Maybe she’d have needed paramedics to bring her down the mountain in a stretcher. But it was still her choice.
The patient is allowed to make decisions just like the rest of the planet. They might be stupid decisions, or decisions fueled by the delusion that if we just tried a little harder, we could get better, but they are still our decisions.*
* I realize this can only be true to a point. A person can be disabled so far as to be incapable of making decisions, but I don’t think either Tracy or I fit that description, though we can both get very incoherent and garbled if we’re passing out a lot. So in fairness to our caretakers, it is sometimes impossible for them to hear us or our decisions on a matter. (eg: “Put me down! I’m going to pass out!” came out as “Gurphurggle own! Immaona fish oo!”)
* I also realize that from a caretaker’s point of view something we look even fairly capable of doing some days (eg: driving a car) causes worry and concern. We insist that we get pre-syncope warnings and can pull over, but those around us fret and chew their nails. What if one time we don’t get the warnings? What if we just spontaneously black out at the wheel while we are carrying precious cargo?
I’m going to walk to the car anyway, Mr. DeMille.
As someone struggling with disabling symptoms, it feels like I’m at war. A war between what makes me who I am, and my body’s new and frustrating limitations. The war is sometimes also (though rarely!) between me and those around me. I don’t want to be viewed as self absorbed, stupidly stubborn, or dangerously willful. And yet, it feels like if you give in and just allow yourself to be handled with kid gloves, or rolled in protective bubble wrap, you will lose everything that remains of who you are as a person.
And even when you admit that it’s a bad day, or a bad week, or a bad month and all you are capable of doing lying in bed, it can feel like the only thing you have left is your voice.
Many people with long term debilitating symptoms find themselves divorced and friendless. It is hard to take care of someone in constant need of care. And it is, I imagine, very hard to try and protect that person from additional pain or hardship only to have that person attempt to climb that mountain / run that race / walk out to the car anyway — over and over, and then watch them suffer more because of it. I don’t fear my family or friends leaving me, but I do worry about making sure they feel loved, appreciated, and heard.
My call to walk out to the car was a good one, I didn’t hurt myself, and the rest of the day went well, but sometimes I do misjudge my abilities and I can’t have anyone looming over me saying, “HA, I told you so. You’re too broken to do this thing!” Because that is not going to help anything at all. Not that anyone ever has said that (other than the voices in my head), but you know, I think it’s good to talk about.
My cousin AJ was in a terrible car accident and is a “Para Plus.” (A paraplegic [waist down paralyzed] with additional paralysis in his chest, arms, and hands.) He can move his biceps, but not his triceps. Meaning he can get his arms up, but gravity has to take them down again.
During his occupational therapy (therapy designed to get him more independent) they were working on him getting his own shirt on and off. When I was talking this over with my family and friends, I used this as an example and asked, “Why would this be something they’d work on? His mom is always there, she can help him get dressed and undressed. Why should he expend any of his limited energy on something as frustrating as getting a shirt on with unresponsive arms and hands?”
Oops, I’m not a black and white photo.
Because! If he can do this small thing, that is a small thing he can do by himself. It gives him a little bit of autonomy in the middle of a life-changing-event where he is suddenly largely and often humiliatingly reliant on others.
Being able to master this is valuable for his mental and emotional state, as well as good for his physical rehabilitation. Could he give up? Could he say “This isn’t working, help me get my shirt on.” Sure. Might he some days? Absolutely. But should anyone stand in his way if he wants to get his shirt on by himself? Tell him they don’t think he looks capable and refuse to hand him his shirt? Absolutely not. And no one for certain should never scoff while he tries to get that shirt on and then roll their eyes and tell him “I told you so” if he fails. (Again, not that anyone ever has!)
AJ is dealing with far more difficulties than I am, but the principle is the same. I need to try. I need to be allowed to try, and I need to be heard when I’m telling you I want to try.
So. Back to our question:
What is the role of the caretaker? Are they just there to help you try to do things that they feel are foolish or unnecessary? Do they not get a say in what they think might be best for you? If you and your caretaker disagree, does the disabled one always win by default because feelings?
I still don’t have a good answer. I know what I feel like I need, but how do I help prevent burn out and frustration of the various caretakers I’m lucky enough to have? I like to think I listen to advice to take it easy. I like to think I give them a say and consider their words, but in the end it needs to still be my decision, right? (For the record, nobody is telling me it isn’t… I’m just overanalyzing tonight.)
The last part of that question is so hard. Especially if it’s over something as small and simple as walking to the mailbox or combing your own hair, because what’s it going to hurt? Let me try this small thing and let’s see how we do. (Again, not that anyone has ever tried to forbid me from doing either of those things, they’re just examples).
It gets stickier if it’s over something bigger.
It’s probably the small pox epidemic. Don’t worry, Diana; I’ll never forsake you.
I’ll nurse you back to health. Please stay until after tea.
I’m trying to look at this objectively by recalling the days when I was doing really great and Tracy wasn’t. Tracy was going to try and continue to teach gym classes to a large homeschool group despite her many issues. It was partly a financial decision as they needed the income the classes brought in, but it was also Tracy making a stand. She was not going to let her disease(s) beat her; she was going to continue doing this thing she loved.
Tracy would promise her worried friends that she would lay on a cot during the lessons and allow her assistants to do most of the teaching, but inevitably she’d have a good moment or a good day and would step in to help a child do a back flip or a handspring and something would go wrong and she’d injure herself badly (easy to do when your ligaments and tendons are made of silly putty), which would then trigger a whole bunch of fainting and shaking episodes.
Anne is all, “But Gilbert, if you would only stop teaching gym. You’d get better! And we could marry and live happily ever after, and people would make sequels about us that have nothing to do with the original books. Like, seriously, nothing.”
To her loved ones this was beyond frustrating. Because, of course, the solution to the never-ending stream of worsening symptoms and injuries was: QUIT TEACHING GYM. One of our dear friends got quite cross and asked me, “Can’t her husband do anything about this?!” Well of course he couldn’t. He might say he thought teaching was a bad idea, but could he or would he even want to force her not to try?
(She’s still teaching gym.)
And I’ll probably continue to try walking to the car when I feel ready.
But I’ll still be asking these questions while I do so and trying to work out the answers.
p.s. Happy New Year!
The post Caring and being cared for appeared first on Very Mom.
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