When can caregiving become overzealous and or abuse?


When we are caring for a parent that refuses to bathe, wash their hair, take medications, eat, drink, etc. How far can you go in providing their care or trying to make them do "what they are suppose to" before you just have to call it quits and let it go or it could turn into what might be construed as abuse?

My mother was diagnosed with pneumonia 6 days ago. She has antibiotics and yesterday was given an inhaler when we had to take her back to the hospital for fear that it was getting worse. She is to use it 4 times a day. She is refusing to use it, says I am a liar and she does not have pneumonia, she was never diagnosed with it, never went to the doctor or had an x ray or went to the hospital yesterday (even though I have provided the paperwork).

This morning and this evening were pure hell in getting her to use the inhaler. She will scream at you that she is NOT USING IT! Tonight when I was telling her to blow out all the air in her lungs, she basically spit in my face. I put the inhaler in her mouth and told her to breathe in as I shot a burst into her mouth. She slapped me.

In an instance such as this and many others that we deal with on a daily basis, when do you OR DO YOU.....just give up and walk away and say in your mind, okay if you die, you die, I cannot do this any longer.

I realized tonight that I cannot make her use the inhaler if she is going to fight me on it. This situation could have turned into a situation where anyone on the outside could have looked at what was going on and construed it to be abuse.

I became her caregiver to take care of her and protect her and because no one else would or could do it. I have two siblings that work and one lives with us. She cannot handle the situation, she has zero patience and as it is stays at work 4 hours past quitting time so she does not have to come home and be around to help. The other works 12 hour days and has two children and her husband is deceased.

I do not want to put her into a NH or a living facility but I cannot handle her constantly fighting me over everything. We put her on Remeron and Celexa and they worked so great to handle her. She developed headaches and was slowly removed from the Celexa and now I am living in HELL!!!

Her Gerontologist has said he does not want to put her back on any SSRI's like Celexa because she will probably have the same headaches or other problems. Instead he wants to put her on Anti-Psychotics that have what he calls a black box....as they can lead to stroke and heart attacks. I want him to try another SSRI and save the Anti-Psychotics for later if needed.

What do you all do when the person you are caring for REFUSES TO DO WHAT THEY ARE SUPPOSE TO or at least YOU are unable to get them to listen and acquiesce? I am just beside myself at this moment as it feels like I have failed or I am in the process of failing at this. I never want to be accused of abuse but i cannot get her to do what she is suppose to do either.

What do you do? Where do you draw the line? When do you give up? HELP!!!! I NEED WORDS OF WISDOM!!!

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when mom wouldnt take her meds cause i was trying to poison her i got the good cop out there ( hospiss nurse ) and just became the agitator in a little cat and mouse. ( shoulder shrug ) " well if you dont take your meds theyre gonna haul you off in the rubber truck again " , and i left the room briefly. she took the meds for nurse. easy on the strongarm and ultimatums id suggest and alas i too understand what it means to do your best.
Helpful Answer (8)

Going back to the inhailer issue.. I am in pulmonary medicine, and someone in your mothers situation should not have been given an MDI. Ask for a nebulizer, home care will pay for the device. She will wear a loose fitting mask and the medicine is aerosolized. While she may fight this also, at least she will get SOME medicine. If she fights the mask, you can simply have the "mist" blow past her nose and mouth. Call it a beauty treatment, say it's for wrinkles.. whatever works! This is how we give it small children. It does take a bit longer, but it may be easier for both of you!
Helpful Answer (7)

HC, in the letter that explained my husband's autopsy results, his doctor told me that my husband had one of the most severe cases of Lewy Body Dementia that they had seen. Yet his symptoms were pretty well controlled by the drugs he took. He was very fortunate that the drugs worked for him. Why did they work so well for him and they don't always work for everyone? The doctor admitted that "we don't know." Hmmm... If drugs are working for your mother, that is Not Your Fault. No one knows for sure why they don't work for her, but it is absolutely certain that this is not a failure on your part.

If her doctor thinks some other drug is worth trying, I think I would go with that, but I can see why you are not optimistic.

Otherwise I think you have a couple of options. One is to place her in a care center. Visit her often. Love her. Advocate for her. Just don't carry the entire responsibility for her care alone.

The other option is to keep her with you. Continue to do the best you can. Accept that you won't always be able to do what you are theoretically "supposed" to do for her. She is not a theoretical patient ... she is your mother and she has significant impairments in her brain.

Either option, take comfort in doing your best.
Helpful Answer (6)

HC, it IS sad. Dementia is about the saddest condition I can think of -- it is definitely in the top ten. If you didn't sometimes feel sad about it I would conclude you were in denial or not seeing things clearly. Acknowledge and accept your sadness. Just don't confuse it with failure.

I don't know how it is elsewhere in the world, but in the US I think we have great confidence in our ability to fix whatever problems come up. And we think we should. So when we encounter a problem that truly cannot be fixed with the knowledge, technology, and resources available to us today, we do tend to think we've failed. That there must be SOMETHING we could/should be doing to make the problem go away. There isn't. And it is not our fault.
Helpful Answer (6)

You are not a failure. This is not your fault. What you are dealing with is the nature of the disease. The problem is a physical one within Mom's brain. Some ways of dealing with her are probably more effective than others, and some tactics may help her be calm better. But face it. You do not have the power to change the tangles or plaques or protein deposits or atrophy occurring in her brain. Prescribing drugs to help relieve symptoms is not an exact science and usually there needs to be some trial and adjustments. If a doctor with dementia experience and in whom you generally have confidence suggests an anti-psychotic, I say go with that. If the first one doesn't help, let the doctor make another suggestion. If Mom doesn't have a doctor with dementia experience and whom you have confidence in, then the first order of business is to get one.

There is no prize for getting through this extremely challenging journey without using drugs or without using certain kinds of drugs. There is no penalty for not getting the loved one to do everything she is "supposed" to do.

Make your decisions in love, with your mother's best interest at heart, and you have done as much as you can. No one can do caregiving perfectly -- we can't even define what that would be!

On the specific issue of the inhaler. I wonder if there is anything else she might not object to that might have at least partial benefits. What if you asked her to help you blow up some balloons? Ask the doctor or nurse to suggest some other breathing exercises that might seem more pleasant to her.

Good luck to you, HC. This is an extremely stressful situation, and you are doing your best.
Helpful Answer (5)

Wow, you don't shy away from the thorny issues, do you?!

Goodness this is a difficult one. Faced with the inhaler situation, I think I'd call my local district nurse and ask for advice. Partly for the advice itself; partly to cover my own backside, I admit, because then at least the problem would be on record as being reported; maybe slightly in the hope that 'someone' would come and do it for me..?

Would I ever resort to brute force, though… Hm. If I could do it without hurting or injuring her..? And if it was really necessary? (I'm not sure about the inhaler. If she refused the antibiotics it'd be different; but the inhaler was to relieve symptoms, not to treat the infection. If she'd rather feel like crap..?) And an acute situation, not something that would go on indefinitely? Quite possibly I would, yes, if I could do it quickly and deftly; but probably not without discussing it with a health or medical professional. It is, technically, assault after all.

For less critical things: well, I've stopped asking my mother if she wants a bath - I just run it and tell her it's ready. If I ask, there's always some reason she doesn't want to "just now" - so it's either ask or get her bathed, can't have both. If she starts refusing to get in… um. I'll cross that bridge when I come to it.

These are fine lines we have to tread. What's normal for most people may not be normal for your parent. What's normal for your parent may not be how he or she wants things today. You have to stop and think what you're trying to do, how much it matters, and then act on your best judgement at that particular moment. What more can anyone ask of us?
Helpful Answer (5)

I agree with glad. My mother has been put on an antipsychotic as her life became unmanageable due to paranoia and Borderline Personality Disorder. Sometimes there are no ideal solutions, so you have to weigh in the balance what is most important. In her case, it seemed to be the only reasonable answer. Discuss it with her doctor again and explain what has happened. A facility is an option. My mother is in an ALF and may be moved somewhere more controlled. There is no way I could ever cope with her in my home.

I don't think for a minute that you have failed. You are dealing with a very difficult situation, (((((((((((((hugs))))))))))) Let us know what happens.
Helpful Answer (4)

First, it sounds like Mom is a job for more than one person. This does not sound like something you can do alone on any level. You need help and you need support and you need a doctor who is willing to try anything to help her. You need to listen to all the other posters who are trying to tell you this is not your fault. It is the disease. A caregiver can only do so much. Try researching on how to deal with difficult behaviors, there might be a few tips that can help sporadically at least. But this sounds like an intense, severe situation that's not going to let up without some pharmaceutical intervention. When my mom's doctors don't give me satisfactory answers or treatment, I change doctors. There are a lot of them out there who are excellent I know what they're doing and there are a lot who don't. And if you have to put her in a facility do not feel guilty about that, you have a very clearly done everything you could. You can't work yourself to death trying to be a superhero and I think if your mom or healthy, she wouldn't want you to do that.
Helpful Answer (4)

HC - re the "summons" to the doctor's office - stop taking it so personally! You are not responsible for your mother's reactions to medication. You are merely reporting effects, and if the doctor gives you a hard time about it he is shooting the messenger. If he continues to appear to blame you in any way, or if it feels as if he's doing that, you could gently remind him that this gives you at least as big a headache as it gives him - and your mother the biggest headache of all! You're all looking for the right balance. It's not your fault that in your mother's case the search is taking time. Best of luck x
Helpful Answer (4)

My mother has dementia, and I will absolutely let them give her antipsychoitics if she become combative. The facts are the situation will not get better, I think coming to that conclusion helped me to come to grips with what has to be done for my parents safety, and those who care for them. It's a trial and error sort of thing with these med's. You have to try different ones sometimes until the right one is found. What is the alternative? Having your loved one in a constant state of conbativeness. This situation is so hard, and the answers are not easy either because what we want is for nothing to be wrong in the first place, but the truth is there is no cure, so they have to treat the symptoms. This is not your fault in any way. You are not able to stop what's happening, but you can help and that is all. I'm not trying to sound harsh, and I hope I am not coming off that way. Someone had this conversation with me. You very may need to allow her to go to a nursing facility. A person can only take so much.
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