Angry
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I don't have this problem very often, but others do. In your earlier thread you described your husband's pain at night. Have you been able to get started on a hospital bed/air mattress to make him more comfortable? I can't imagine dealing with this disease without help. Add pain to immobility and, well, how awful. Do you think that's what's going on, or might your husband be dealing with FTD?
Becky
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Yes, it is more a loss of insight and/or empathy than a desire to be mean. ALS causes cognitive changes in most people, though they can be obvious or subtle. And then there is the energy it takes to keep going in a failing body (literally -- ALS speeds up the rate at which calories are burned-- and mentally), that often takes away from the person he was before ALS. If it happens more at night I would also think about fatigue -- are the day's activities too much, and how long/well he sleeps.
Best,
Laurie
Best,
Laurie
Atsugi
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Yes, it sometimes happens. In my limited view of the experiences in this community, I think that a significant number of PALS turn inward and get depressed. Many of them focus a lot on their own predicament, which is quite natural, but then they forget to appreciate their CALS. Finally, a few PALS get downright abusive, demanding, and ungrateful.
Sad but kind of understandable. Then, there's FTD, which seems to have a variant including a nasty temper.
Sad but kind of understandable. Then, there's FTD, which seems to have a variant including a nasty temper.
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If he is refusing the aides that would make life bearable, and if he is in full possession of his mental faculties, it might be time to stop taking the abuse. ALS is a terrible sentence, but that is not a liscence to abuse one's caregiver. He needs to take care of you so that you can take care of him. He might need to be told that.
bigmark1954
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At your next clinic....make sure you discuss his mood and aggression with the doc.
Many of us get depressed, moody and/or agitated, at intermittent intervals. I would dare say that the majority of us are on anti-depressant of some kind.
Being a PAL is not very glamorous, and can really affect ones psyche.....Don't hate the playa, hate the game!
Many of us get depressed, moody and/or agitated, at intermittent intervals. I would dare say that the majority of us are on anti-depressant of some kind.
Being a PAL is not very glamorous, and can really affect ones psyche.....Don't hate the playa, hate the game!
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When dealing with someone with a terminal diagnosis one of the issues is loss of control. The persons body is failing and there is nothing they can do about it. I've seen this with cancer patients, diabetics, people with a host of other conditions. Sometimes it manifests as non compliance with drug regimins. Other times it it is refusal to use equipment. Sometimes it is how you treat others. It all stems from a need to assert some level of control. It is unfortunate it seems directed at you. It isn't you it is this damned disease.
Vincent
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I would have to completely agree with everything said. Level of "meanness" is positively correlated with increase loss of control. The real questions is how, as a caregiver, to cope with it. There are no easy answers and everyone is very different but I can tell you this much, if you react to a nasty comment, it only makes the situation worse. I remember my wife telling me, in one of her fits of anger, that the only reason she married me was because her parents approved of me and not because she ever loved me. Granted this is a person I was bathing, changing her feminine napkins, brushing her teeth and feeding her. Best advice is not to respond and redirect much like you would with a a child. Instead of "taking the bait" you might say, is there a particular show you want to watch on Netflix today?
affected
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I so agree with alligator.
And if FTD is involved, it is even more important not to get drawn into the nastiness and respond in kind. It definitely escalates everything, FTD or not. But with FTD they have such paranoia and so little empathy, and do not have memory issues, so if you let yourself get drawn in and say or do nasty things back, you can guarantee this will fuel the paranoia and lack of empathy. You cannot sit down later when the situation has cooled off and discuss what you both said and resolve it. This is where you can often pin classic FTD.
If a PALS is just understandably having a hard time dealing with progression and venting at you, they will later apologise and you can work together. If FTD is present, they will adamantly stick to their right to behave and treat you any way they like, and yet hold even the smallest thing against you for good.
It's a very fine line to draw boundaries on what you will take as their CALS, and not being drawn into outright nastiness.
And if FTD is involved, it is even more important not to get drawn into the nastiness and respond in kind. It definitely escalates everything, FTD or not. But with FTD they have such paranoia and so little empathy, and do not have memory issues, so if you let yourself get drawn in and say or do nasty things back, you can guarantee this will fuel the paranoia and lack of empathy. You cannot sit down later when the situation has cooled off and discuss what you both said and resolve it. This is where you can often pin classic FTD.
If a PALS is just understandably having a hard time dealing with progression and venting at you, they will later apologise and you can work together. If FTD is present, they will adamantly stick to their right to behave and treat you any way they like, and yet hold even the smallest thing against you for good.
It's a very fine line to draw boundaries on what you will take as their CALS, and not being drawn into outright nastiness.
pittsburghgal
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I agree with alligator that the degree of meanness correlates with loss of control, at least if FTD is not involved.
Last night my PALS could not stand from his wheelchair to pivot to the commode. He had absolutely no strength to do it. This is the first time this happened. I said we need to start using the hoyer lift that we have and he got so angry at me. He said, "So I should just give up? This happened because you don't exercise me enough." After waiting 1 hour, I was able to lift him using a grab belt around his chest but I now have pain in the back and shoulder. He also said that I should just put him in a home.
This morning he thanked me for taking care of him. I think seeing another ability slipping from his grasp is so painful.
Sharon
Last night my PALS could not stand from his wheelchair to pivot to the commode. He had absolutely no strength to do it. This is the first time this happened. I said we need to start using the hoyer lift that we have and he got so angry at me. He said, "So I should just give up? This happened because you don't exercise me enough." After waiting 1 hour, I was able to lift him using a grab belt around his chest but I now have pain in the back and shoulder. He also said that I should just put him in a home.
This morning he thanked me for taking care of him. I think seeing another ability slipping from his grasp is so painful.
Sharon
bigmark1954
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Yup....what you and Gator are saying is spot on. Loosing mobility and speech etc., makes us frustrated and scared, and hopeless.
FTD is not always indicated when we get angry, mean, and frustrated. Even the most even tempered person can morph into negativity under these circumstances.
CALS need to be more direct in addressing these issues when they get to the point of being abusive. PALS are so caught up in their demise, they may not understand how abusive they are being. Choosing the right time to address these issues is crucial.
4tloml
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I'm lucky the true nastiness doesn't happen often--my PALS mostly gets very insistent, impatient...childlike, actually. But if he does get ornery, I'll just ask him, "is that the ALS talking now, because you have never been that mean before." It seems to shake him out of it. No one wants to be controlled by ALS, so when it's brought to his attention that it's turning him into someone mean, he tries hard to reign it in.
ALS IS mean, and scary, and sad, and although I feel those things along with him, I can never truly fathom the depth that my (or any) PALS experiences them. I figure he's bound to lash out now and then, but it doesn't hurt to remind him the lashing out is about the ALS, not me. We're both (in fact everyone here is) just doing our best with this beast. Wish so badly I could pick it up and throw it out that I've been tempted to substitute a plate or a glass. Have resisted so far, but if you hear something shatter.... :wink:
ALS IS mean, and scary, and sad, and although I feel those things along with him, I can never truly fathom the depth that my (or any) PALS experiences them. I figure he's bound to lash out now and then, but it doesn't hurt to remind him the lashing out is about the ALS, not me. We're both (in fact everyone here is) just doing our best with this beast. Wish so badly I could pick it up and throw it out that I've been tempted to substitute a plate or a glass. Have resisted so far, but if you hear something shatter.... :wink:
Kelly5538
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My PALS was never the picture of happy, the entire time we have been together. Now he is just downright mean to me, often. Yesterday I got yelled at for working on insurance paperwork and he told me that I'm more concerned about money than his health (not death insurance, I'm talking about his long term disability from work) and then I was told that I keep getting his friends over to babysit him so I don't have to. I don't call his friends over, he does, or they just come by (very close knit friends) and I use that time to get caught up on things like laundry. Yesterday I yelled back. Only so much a person can take - but he doesn't feel bad or upset. He actually laughed at me. Makes it tough to keep caring for a person who treats you like dirt, but I keep telling myself that it's this awful disease. Just keep swimming.............
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