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A question about caregivers making decisions for the patient
Hey guys, I would like your opinion on something but before I ask the question, I think I should fill you in on a few details:
1). I had a speech therapist explain that it is safe for me to have things that melt in my mouth even though I am NPO – as long as I am responsible about it. So I like to have butterscotches, peppermints, cinnamon discs, M&Ms, chocolate chips, etc. throughout the day. It is one of the only things that is currently bringing me joy.
2). Me and my brother (who is my caregiver) have gotten into fights because he thinks I’m having too much candy and he should put a limit on it and I think that is wrong because I am an adult and I should have the ability to make my own decisions even if I can’t act on them myself. It’s actually a topic I have seen in the disability community – the consensus being that if a disabled person is, for example, drinking too much and the caregiver thinks that they are becoming an alcoholic, the caregiver should say something to the disabled person about it but not refuse to give them a drink when they ask because then they would be taking away their right to make their own decisions as an adult. Now, I don’t drink because I don’t think it’s safe with all the meds I’m on. All I ask for is the candies. But my brother thinks that the disabled community’s opinion is invalid and he’s not going to listen to it.
3). Because I can’t tolerate my food right now, my blood sugar keeps dropping and making me pass out from dizziness and whatnot. But he doesn’t see that because he is not in here when it happens and he doesn’t believe me when I say it happens. He thinks that I just want some candy and am making an excuse to get it. So I got a device that checks my blood sugar level and the nurse taught him how to use it. And when he asked her: “What should I do if her blood sugar is low?” she said that giving me something with a lot of sugar, like chocolate chips or butterscotches would help. So when she is here and my blood sugar is low, he has no problem giving me them. But when she is not here he not only complains about giving me them but he doesn’t even like checking my blood sugar. So I stopped asking him to check and instead, whenever I feel like it is low, I just ask for some candy. Oh and btw, I only ask when he is already in here – which is almost never.
So today, when he took my BiPap mask off and he started complaining that I had leftover chocolate on my lips from the night before. And then he started a fight where he was saying that I am being a selfish b-word by eating too much candy when his life and his daughter’s life is at stake. He says that if I die from respiratory distress, it’ll be because of all the candy and he will be arrested for negligence since he is my caregiver and therefore responsible for me and shouldn’t be giving me candy. I said that’s not gonna happen because it’s my choice to have the candy and he is not responsible for my decisions. He said that he is my POA so he is responsible so I pointed out that the POA only comes into effect if I can no longer think or speak for myself. He brushed past that and continued saying that he will be arrested if I die. After about an hour of this, I finally gave in to my frustrations and I pointed out that if I do die anytime soon, it won’t be from respiratory problems. It’ll be from my malnourishment so if he is arrested, it actually would be his fault because I keep asking him to make an appointment with my GI doctor so that we can figure out a solution to my problems regarding the constipation and me not being able to tolerate my food but he hasn’t yet.
So my question is: What do you think about this? Am I really being selfish because I want some candy and am exercising my right to ask for it? My situation is so bad right now that I am not exaggerating when I say that the only small pieces of joy I can find each day is YouTube, working on my book with my mom, and my candies. I’m also starving. I really don’t want to give them up. Is that selfish? – Crystal
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5 Replies
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Crystal,
This is a very complex situation so I’m going to try to address a couple details.
First, he sounds like he is in caretaker burnout. This kind of conflict happens when our caretakers don’t get a break. You two need a timeout from each other.
As long as you are of sound mind and are able to make decisions, you are still the one making your healthcare decisions. The grey area here is he can say that you are not mentally fit simply because he doesn’t agree with you.
The only way to resolve these two approaches is to see your G.I. doctor. Frame it like this, “let’s ask the expert and we’ll decide from there.” Right now you’re both entrenched in opposite points of view and you’ll never come to agreement like that.
Have you gone to the SMA clinic for assessment and evaluation? When I go, they include a visit with a dietitian who could answer some of these questions for you.
It also sounds like he’s concerned about your sugar intake. Is there a compromise with natural sugars like honey candies?
IMO, you’re not being selfish, you are fiercely defending this one last pleasure in your life. Feeling hungry all the time is not helping, but that is something you need to address with a dietitian or a G.I. doctor.
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He never mentions my sugar intake. He is concerned about me aspirating it because of my weak throat muscles. We all know how hard it is to fight pneumonia. He thinks that I will get pneumonia from having too much candy, but before he took over, I was having way more candy and I wasn’t getting pneumonia. I’m not saying that I never got sick but I could always pinpoint why I was sick because I kept track of every time a nurse/CNA at the nursing home refused to wear a mask or started my feed machine while I was still laying flat or something along those lines. He just doesn’t believe that.
I live in a small town and I haven’t been able to find an SMA clinic around me. Also, I am currently completely bedbound and require an ambulance to go anywhere so I haven’t been able to see my doctors. We are trying to find a way to fix that and, in the meantime, I’m trying to get him to call my doctors and ask them if they’re willing to do televisits for now. I’m just having a hard time getting him to do that. I think you’re right about the burnout but I don’t know how to fix that. He is my only caretaker. And I am completely dependent on him.
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Hey Crystal. I can see where you’re coming from. While I’ve never been told I’m not mentally fit to make my own decisions, I have been told before that I’m “too naive” or “not mature enough.”
It sounds like your hurt is coming mostly from having more of your agency taken away from you, when you don’t feel like you have anything much as is. And your brother isn’t hearing that because he’s burnt out. That’s not your job to fix, though it may feel like it is. That is more the job of a healthcare professionals and maybe a family social worker. That’s what my team always tells me.
What Susanna has proposed sounds like a good path forward. While you’re working on getting a telehealth consultation, I just wanted to remind you that choosing how you react in any given situation is still having ownership over your agency. You’re never without it completely.
Everyone here at SNT is rooting for you.
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This reply was modified 1 week, 4 days ago by sherry-toh.
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This reply was modified 1 week, 4 days ago by
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Hey Crystal. It looks like Susana and Sherry have already given you some solid advice to consider. I’m sorry you’re going through this. Please know that we support you here.
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Thank you guys.
I think my plan is to mention it when the caseworker comes on Tuesday and see how that goes. And then I’m trying to give my brother a break as much as I can. It’s just hard because my body has a mind of its own apparently. But I’m trying.
Still, I appreciate everything you guys have said. I definitely feel better now. At least a little. My life is still upside down right now but I’m working on it.
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