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How do other caregivers cope?

I need to learn how other caregivers cope when the person they try to help is always nasty and hurtful to them? I know that it is part of the disease process, but have also witnessed in being turned on/off depending on who else is in the room.  I don't mind helping, but am getting the to point I cannot cope with the hatefulness anymore. Everyone says don't take it personally, but I can' find how not to.

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AARP Expert

@d265070p I think Jane and Amy have given you some excellent advice for changing this awful situation by using medications, different behavioral approaches or even leaving the room or quiting caregiving entirely. I'd like to suggest that--if you try these things and your husband is still mean--then your only recourse is to change your reaction to the situation by gaining greater emotional distance and developing more tolerance. Easier said than done, of course.


A quick story: Years ago, when my step-father was in the mild to moderate stage of Alzheimer's dementia, he agreed to undergo shoulder surgery for which he would have to be anesthetized. I told my mother that, given his compromised brain, he was a high risk for developing post-surgical delirium. She didn't believe me. After surgery, his personality was completely different. He was enraged and screaming at my mother for harming him. She spent three days by his hospital bed, still thinking he was in his right mind and consequently feeling anguished and panicky that he was so angry at her. I kept repeating to her that he was in an altered state and would never remember anything that he was saying. I also told her that his delirium would take a few days to clear. It did. She was still shaken afterwards but felt better. He didn't remember anything he'd said or done after surgery. Eventually, she told me she wished she had believed me; it would have saved her a lot of strife. After that, she stopped taking his occasional periods of agitation and meanness so seriously. They were like violent thunderstorms that passed. She found that she could wait them out and the sun would come out again and she'd be okay.


Your feelings will be hurt probably again and again. The storms will pass, hopefully without too much damage. Try to believe that you'll be okay.--Barry Jacobs, Psy.D.

AARP Expert

@d265070p It's such an emotional rollercoaster when those we care for are angry, unappreciative, hurtful, combative or aggressive and nasty. As you say, it's the disease process (what is the disease you are dealing with), but it's hurtful and heartbreaking to have someone we love be mean to us. 


My Dad had Alzheimers and sometimes he would get so anxious and frustrated he would say mean things and be resistant. He was always an easygoing guy and very loving and affectionate. So the change in behavior - even cussing when I'd never heard him cuss before in my whole life - was so distressing and depressing. Maybe you're feeling some of the same things?


I always knew in my head that it was not personal, but in my heart it hurt. Knowing it's part of a disease process is helpful, but we still have to deal with the behaviors in a very practical way. 


In addition to my Dad I've worked with many older adults over the years and here's what has always helped the most: I try to figure out what's behind the behavior and do something about the cause. It could be that the person you are trying to help feels (and keep in mind it could be real or perceived things - doesn't really matter which it is because the behavior is the same):

  • pain (this is really common - especially with chronic pain)
  • fear
  • anxiety
  • helpless (it's a vulnerable feeling to need care and help)
  • useless 
  • loss of control of their lives, body, emotions
  • anger
  • depression
  • medication side-effects or interactions

Sometimes you might have to guess what is at the root of the behavior, or use your intuition. Taking a step back and observing in detail can help.


Often, the person providing care becomes the target of all the bad feelings because the care recipient feels "safe" with you. They feel like you won't abandon them even if they take out all of those difficult things they are feeling on you. 


Then address the root of the problem. Jane has suggested several good things and in addition I would suggest looking at alternative approaches that calm anxiety and all of the other issues. For example, my Dad would get very anxious and restless in the late afternoon (sundowners syndrome) and we began giving him foot bath every evening and a foot massage. He loved it and it calmed him and distracted him from the feeling that he should be going somewhere or doing something (because that was the root for his restlessness). Dad also got acupuncture and the Chinese Medicine doctor prescribed Chinese herbs that helped calm him. When my Mom got sharp with me I knew her pain was out of control, discussed it with her and her doctor and adjusted her pain medication. Sometimes her behavior was caused by an undetected urinary tract infection. 


If your loved one is feeling like life is out of control (who wouldn't if they were in need of caregiving!) perhaps there are things you can do to help them feel more in control - choices they can make (from choosing their outfit to choosing what they eat to making decisions about where they live). 


If pain is not under control consult with a pain specialist. If depression is an issue (more common than you might think in older adults) then medication, counseling etc can be explored. 


Boundaries are always a good idea too! But sometimes others can't understand the boundaries (ie with dementia). Allow the person ways to express their discomfort, anger, frustration etc. but be clear you have your limits.


I hope this perspective is helpful to you! Please let me know if you need help figuring out how to address whatever is at the root of the problem. 


Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving 

AARP Expert

@d265070p wrote:

I need to learn how other caregivers cope when the person they try to help is always nasty and hurtful to them? I know that it is part of the disease process, but have also witnessed in being turned on/off depending on who else is in the room.  I don't mind helping, but am getting the to point I cannot cope with the hatefulness anymore. Everyone says don't take it personally, but I can' find how not to.

Sometimes its part of the disease process, and sometimes its a lot of things coming together in a terrible stinky stew. And you don't have to be a punching bag. Here are a few ideas. 


One is whether the care-recipient's doctor knows how disagreeable s/he is being. Because there are drugs. Is s/he paranoid? Resentful? Angry? Drugs. Better living through chemistry. There are medications for agitation, for delusions, for depression. Try one and if that doesn't work try another. 


Another idea. Spread the 'wealth'.  Who else can pitch in, take turns, contribute money so that someone professional can be hired for a few hours or days a week. Cast a wide net. Enlarge the caregiving circle. Martyrdom is not required.


A third. Train the care recipient to be nice. Reward polite behavior, and leave the room if s/he is rude or abusive. Name calling? "Bye now. I don't have to put up with that language. Sit in your dirty diaper for a while. When you feel like being nice, let me know."


Everyone can be trained. Even people with dementia. 


A fourth: go to an elderlaw attorney and take info about his/her assets, and see how much care s/he can afford. How close to medicaid eligibility. Use their assets to pay for care, pay for placement, or apply for medicaid. get professional help. do as little as possible yourself. make sure as best you can that the care is decent. but no need to paint a target on yourself and say, hit me here. 


what do you think?


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Regular Social Butterfly

@d265070p   Not sure if it is what you are looking for, but awhile ago AARP had a link to an article by Linda Bernstein titled "8 Things Not to Say to Your Aging Parents".  I printed it off because I thought it was very helpful information on working with empathy in the aging process.  I will try to put the link here and hopefully you can have it for reference.


Hope this link works.

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