Said my mother, to my brother, when he was talking about being so busy as the worship leader for his church. I don’t begrudge my brother one bit, he does work hard, but I damn near choked on my own saliva when I heard her say that, as I washed dishes in the background.
I haven’t had a break in 7 years. I mean that quite literally. I haven’t had a day off, I haven’t had a day of rest, I have been switched on, taking care of her 24/7 for 7 straight years.
“But Amaris,” you might ponder, “didn’t you go see a Star Trek movie here and there?” and I reply to you that I sure did, but that’s not a break in the sense of getting time off to regenerate and rejuvenate one’s mind and body. That’s the equivalent of getting 5 minutes to grab a snack or a cup of coffee before getting back to your 24 hour shift. In some technical sense it’s a break, but in reality it doesn’t even scratch the surface, and I deal in reality.
Hell, even when I went to see the Star Trek films, my phone stayed on (vibrate) in case I needed to be called back home for any reason. It’s like being a doctor on call, but perpetually, and without time off over the course of 7 years. My body, nor my mind, gets to rest. The other night, I had to wake up 7 times, during the night, to take care of something she needed.
So to hear her say “everybody needs a break! No one can work like that for weeks without getting burned out” to my brother, as I washed dishes, did the laundry, changed her bandages, ordered new medical supplies, cooked dinner, dusted the furniture, scrubbed the toilet, readjusted her position in her bed, and filled her water glass, made me want to choke.
She interrupted my dinner twice this evening. I haven’t had an uninterrupted meal in many years. I don’t listen to music very often, because I can’t wear headphones in case she needs me. When I try to read, I have to keep a bookmark handy because I *know* I will be called upon before I finish a single chapter. It has been this way for 7 years, and before anyone asks, before then I was doing the same thing, but it didn’t require all of my time.
When mom was first disabled in the mid 1990s, I was still in school. I would come home from school, and take care of what she needed. My time was 40% school, 10% personal time, 50% caregiving. In the early 2000s, she started to get better, and could walk again, to some degree, and so I was working 40% of the time, with 30% devoted to caregiving, and 30% devoted to personal time. That would be the highest it would get.
In the mid-to-late 2000s, she started to decline in health somewhat, and I had started a new job which took a lot of my time, so it became 50% work, 45% caregiving, and 5% personal time. It was after her kidney surgery that things turned as southward as they did, and my caregiving went full time. Currently, it’s 100% caregiving, no job, no personal time.
To give you yet another example, in the time it has taken me to write these 556 words (as of *this* word), I have been called upon 11 times. I don’t write my novels anymore, I don’t write songs anymore, I don’t write poems as much anymore (the brevity of poetry works in my favor at times). Do you know what this does to a person’s brain when they don’t get enough time to eat, sleep, to daydream, to rest their mind? My mind is like a sieve, nothing stays in it, it just leaks out. I’m to the point now where you can tell me your name three or four times, and I’ll still have forgotten it by the end of the introductions.
I don’t know, it’s just the statements she made bother me so much. She is right, in that one must take a break every so often, because otherwise one will get burned out, but she said it with me standing 10 feet away. It’s almost like I wasn’t there, or didn’t matter. Now, I’m not saying my mom doesn’t think I matter, but it does show how much she takes me for granted. She tells me she’s sorry, and she tells me it’s not her fault, and it’s really not her fault, I know that, I mean who blames the person for the disease (if you’re not GOP, anyway)?
The problem is that it doesn’t fix anything. If you shoot someone in the leg, saying sorry doesn’t remove the bullet and heal the physical wound. There is a long path of devastation and destruction behind me, and my future looks like what remains of the Roman coliseum, as it crumbles before me.
I know she has to know this, or maybe she doesn’t. I know the stroke caused some minor affectations, and I think that may have been one of them. Who knows? Regardless, I need more than a break. A break would be inadequate at this point, but that doesn’t mean I don’t deserve one, too.
THE DARKEST THOUGHTS BEFORE THE DAWN
There is something really amiss here, just within the context of being a 100% full time carer. There is no way you need to be interrupted 11 times in the course of typing 500 words. It seems at some point, presumably when you were quite young, caring has come to mean being at the person you are the carer of’s every beck and call. You don’t care more or better by doing this but sometimes it can feel like that. Just imagine if your mom was in the best, top, most private and expensive care facility ever.. there is no way they would attend to her wants like this, it’s not normal in any way. And I say “wants” because it seems very unlikely to me that this intense level of interruptions is only about needs. You should be able to set your mom up with a drink, a remote, a magazine.. and say mom I’m going to watch something for an hour you do your thing and don’t call me unless you are having a medical emergency. She sounds extremely emotionally dependent on you in a very unhealthy way, for both you AND her. It is never too late to start setting boundaries, small ones if you feel overwhelmed at the thought. You can give yourself half hour uninterrupted breaks and keep reiterating and emphasizing this to your family until they get used to it. I know boundaries seem really hard but you’re where you’re at now because no one acknowledged, respected or recognized that you have them. It can be hard to even see how they work when they’ve been erased for so long by other people. I hope you will be able to make some steps forward to reclaiming your days, remember this isn’t being uncaring and if people take is as if you let them down their expectations were unrealistic to begin with.
Hello Jen, thanks for commenting. Regarding the number of times she calls on me, I think part of it is due to the stroke she had last year. She is occasionally forgetful, and sometimes doesn’t realize she calls on me as much as she does. She’ll tell me “I haven’t called on you much today,” and when I tell her she’s called on me 20/30/40 times today, she’s shocked.
Another thing is that I handle everything she needs, with emphasis on *everything*, because she’s bedridden, has arthritis, and can’t even sit up under her own power. My father works 16 hours out of the day, and his job is very demanding, so that when he gets home, he hits the recliner and he’s out.
I’m not sure how to resolve the interruptions. I really do believe some of it is an affectation from the stroke. She apologizes, and I feel bad for her, but it doesn’t change the issue. Also, yes, she is very attached to me, because out of all the family, I’m the only one who has stuck by her unfailingly since she got sick all those decades ago.
I agree with Jen that having your meal interrupted twice is too much for anyone to handle. Perhaps you sometimes need to say to your mom that you need half an hour to yourself with no interruptions to enjoy your meal and destress a bit. I’m thinking half an hour because that’s not too long for her and hopefully will give you just a chunk of time to yourself. It may be difficult at first, but as you say it seems as if your mother cannot recognise that you never have a break, so perhaps you could start with a few half hour breaks each day and hopefully move on a bit from there. Is there still no chance of respite care?
Hey Mary Ann, always good to see you here. ♥
No luck on respite care. Mom and dad’s insurance is just worthless. Local senior groups can’t really do much because mom doesn’t have medicare yet, and won’t for about 4 more years. Once she does, there will be some help, but for now there’s nothing much they can do.
The thing is, I’m trying to teach her to have me do multiple things for her at once, so that she doesn’t need to call me back every few minutes. She also doesn’t understand why I don’t get much sleep. I explain to her that it’s like being a doctor on call. Even if she doesn’t call on me for half an hour, I don’t know that until the time has passed, so I have to be awake and alert. When she had her stroke, it was 6:01 AM, and I was still awake, and for that reason I caught it in action. Because it’s just me and her here 99% of the time, I’m her only line of defense in an emergency. She has trouble using the phone because she can’t see well, and has arthritis which makes it very difficult for her to push the buttons. Same goes for things like the remote, and her computer. I’m retraining her on how to use that, since she has so much trouble with it now.
She gets therapy a couple of times a week, and they do okay, but what she really needs is a full nurse team. She needs someone for therapy, someone to maybe help me around the house a few times a week, someone to see to her wounds, which I take care of, and I am *not* certified to do that, but they don’t cover it. I do well enough, but I just know one of these days she’s going to get a wound on her that I can’t stop from growing worse, she’ll have to go to the hospital, and then we ride the merry go round all over again.
If we had healthcare like the U.K., my mom would have either been better by now, or would have at least had the support she needed that went beyond one amateur doing his best.
Have you thought about using some form of timer so your mom has a visual aid for how long you want a half hour break? That way she can see oh, only ten minutes have gone past and I said he could have half an hour, I’ll wait until that dial reaches the end. I’m afraid that if you don’t push for this yourself it is not going to happen. Maybe if you make it something you do together, a project for you getting more destress time that she can help you with by using the timer, she might feel good about that too.
You might be on to something, though I’m not sure a timer would work. For about 7 years now, she has had difficulty with clocks, and time in general. I don’t know how it started, but she has trouble reading and recognizing the time on them. The stroke amplified that problem, to where she can often figure out the very rough general time of the clock, she can’t focus enough to know what time it is without help from me. It is an idea, though, and if I could make something work it would be worth the effort to give it a try.
Maybe a sand hour glass, for half an hour? If the numbers etc.. are hard to focus on.
I never thought of an hourglass. I’ll find a way to test if she can see one clearly enough, and if she can I might try that, thank you. 🙂