Screaming not acceptable. I feel like a monster - like I'm losing it. How do you cope?

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I care for my Mother, my Dad and my husband. Last night I screamed at my Mother (who has advanced dementia) and although she seems to have forgotten it, I can't. I feel like a monster - like I'm losing it.


Anyone relate? How do you cope?

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Caregiving can be a soul-destroying process and the worse their condition becomes, the more frustrating it is especially when they have bowel movements in their diaper and just sit on it..sometimes for hours...until you check and even getting them to stand up is a challenge. Then you think they are going to get another urinary tract infection and yet another Emergency room visit. The stress is continuous the moment you wake up...or the moment they wake up it starts all over again. Accepting their failing condition is a tough thing and you go through long-term mourning which can last for years...there is anger, depression, crying...you are human. Do the best you can and take it a day at a time. But don't be afraid to bring up the issue of palliative care so outside people can come in and lend you a hand. I mean you can put it off as long as you can but eventually you will need some outside help. Try cultivating your own life such as pursuing interests..maybe take some online classes. Exercise daily. Something. but taking care of someone with Alzheimer's in advances stages is a very heartbreaking and it will bring you a considerable amount of suffering. They won't be able to talk to you or tell you if they are hurting so it's a frequent guessing game. Frustration? Yes. And it will totally destroy you...because it can last for years.
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keepingup Aug 2, 2018
Your reply was wonderful, useful. The most important thing you said, to me, was to not forget that "you are human" I think from personal experience and this site that we go into an almost robotic,mechanical mode: What do they need now? What emergency is next? We really do forget that we too have needs,as much as we push them aside. Thank you cetude☺
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I very rarely swear in real life and I never would have predicted it, but I have used swear words with my mom, called her a b*tch, and on one or two occasions yelled. Never thought it would happen, and I am not proud to admit it. However, we are being pushed to the limit and things happen. We are not perfect. You are right in that your loved one has always forgotten.

Note: If you ever well and truly think things could escalate to a really bad situation, it is imperative that you immediately WALK AWAY and get that physical distance to calm down - no matter what the situation. I have done that, and it really does help. Forgive yourself! Best wishes.
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You are human. Not perfect. Use it as a red flag that your reserve is gone. You need to get away for a break. To replenish yourself. Think carefully about what happened. Were you extra tired? Hadn’t slept well? Hungry? Had too many people in the house? Had an unexpected issue pop up?
Do you have help? Are you trying to do everything yourself? Do you miss your children, your grands? Do you need a nice chat with a friend?
Maybe sit and journal about any and everything. Just write it out to get it out of your head.
Do a little penance. Be extra nice to mom.
Come here to vent. Tell your husband you need an extra hug.
Do you have a point you are going to seek help? Is it when she needs help eating? Going to the bathroom? Staying in bed? Can’t talk? Doesn’t know you? Have you talked to her doctor about hospice?
Check in with you and see what’s going on. It’s a journey. Things won’t stay the same but you know that already. Take the rolling pin to a pillow. It’s the dementia you are mad at. You have a lot of people depending on you. Take care of you. You are important. Hugs.

edit: I just saw your comment about needing their money and the other family members health issues. I have read where Medicaid does not impoverish the community spouse. Try to see a certified elder attorney and go over your parents and your own situation. Each state is different but from what I’ve read you may be able to get help without losing all or any of the income. Make sure the attorney you contact has experience with Medicaid. 40% of caretakers die before their loved ones. You need to do this not only for yourself but also your family. Don’t decide based on others opinions that there is no help. Check it out for yourself.
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dlpandjep Jul 31, 2018
Wow - you've given me a lot to think about. Thank you for taking your time to give me so much advice.
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My dear husband's dementia, sadly, has brought to the forefront his very worst behavioral and personality traits. Early on, not knowing how to deal with the situation, I coped by leaving for hours at a time - and very much dreaded the thought of returning home. And yes, I've screamed a few times too. And I don't feel at all guilty about it. As a caregiver, I've come to realize that my survival is every bit as important as his. And this AARP forum has helped me immensely in my journey. By far the most valuable piece of advice I've gleaned is that he lives in an alternate reality, and that both of our lives benefit if I can simply validate his reality instead of continuing my attempts to orient him in actual reality. With this approach I've managed, in the past year or so, to gain a measure of peace I thought had been lost forever. It's like magic!
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lmb1234 Aug 3, 2018
SWOMBO, your story sounds identical to my situation with my mother. Hopefully, your words and the affirmation of so many others on this forum with provide the initial poster with a measure of peace. Hugs to all of you who are dealing with such difficult situations as well as for your loving natures.
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There are a lot of good responses here. From my experience, the stress continues in a cyclical downward trajectory. Get caregiving help any way you can. There have been recent studies on the wellbeing on familial caregiver’s physical and mental health. The findings are disturbing. Caregiving for our sick parents can have an extreme adverse affect. It’s difficult and sometimes costly but you need to find a way to relieve yourself of some of this stress. Check out living facilities, in home care, and other services available to you and your parent. Start with your parents Doctor for resources in your area. Stress does horrible things to your body and mind. Do not feel guilty for taking care of yourself. Sometimes we MUST take a step back to better care for our loved ones and ourselves. I cannot stress enough about letting go of any guilt you may have. It is counterproductive and guilt does not help you in any positive way. I wish you peace and hope you take care of yourself.
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dlpandjep Aug 2, 2018
You express yourself beautifully. Thank you for your advice. I do have help with both Mother and Dad, but still the 24/7 responsibilities can be so draining. My favorite outing is Walmart! Isn't that crazy. :)
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Last night I had a dream. I don't usually recall my dreams, but I awoke soon after, after falling asleep some time after 11 with the light on. In it I was angry and ranting at my mother who has dementia because I had discovered my Keurig was completely taken apart and a part was missing. The odd thing is while I have one, I rarely use it and when I do it's for hot water to make tea. And it has never been on the kitchen counter. All to say that as others have, we are human. If there is a blessing in this wretched illness it is not only having the capacity to see the humor in retrospect (and we do laugh at my adult children's support group) and that those who have the illness as trying as they are, will forget just like they forget so much else. It's always easy for everyone to say do this or that, find some time/place...but way harder to do. Anger builds and sometimes gets displaced. It is so exhausting. I think it was a facebook post I saw earlier that said if you can't control what is happening, work on controlling your reaction to it, that's where your power is. For me, it's a goal. But even when calm at 2 AM, going into the kitchen and finding things amiss can set me off. You're not alone. And we're all doing our best. And not all of us have/had good relationships over time with those we care for.
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dlpandjep Aug 2, 2018
You're carrying your frustrations into your sleep - I've done that too. Sometimes I wake exhausted from my dream!
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If there is a caregiver that has not gotten angry or yelled they are lying.
You can not do this without getting angry at the situation, at the person, the frustration.
All you can do is try to pinpoint the trigger and try to redirect YOURSELF.
That may mean walking out of the room for a bit.
When my Husband could be left alone for a little while I can not tell you how many car rides I took to the local Forest Preserve and just sat for a while.

I did find one thing that stopped him in his tracks one day. He was doing something that I did not want him to do (He was trying to help me cook dinner, I wanted him to sit down) The more I tried to get him to go sit down the more adamant he became and the more adamant I became. I realized this was not going anywhere and I just started to laugh. A big laugh. He stopped, looked at me and he started to laugh as well. Once the "push-me-pull-you" was over I could easily get him to sit and have a bit to drink and nibble on while I got dinner on the plates. (I have said for 37 years I was married to a {sweet, kind}stubborn pigheaded German)
Bottom line try whatever you can to change gears when something starts to get to you. If I raised my voice to my Husband I would feel terrible, I still feel bad when I think about it and it is bothering me a bit now..I would apologize even if he did not recall what happened.
I also found that lowering my voice, not just being more quiet but lowering the pitch I think he understood me better. It seems like the higher pitch of the voice something is lost. So rather than yell go the other way and get more quiet and lower the pitch. That may also be a way for you to change gears since you will be concentrating on the voice and not the aggravating situation.
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I understand completely. My mother also has advanced dementia, and I've also lost my senses at times. I have to remember that she's not the person she used to be, and it's really not personal. On days when she's herself, every things fine, on days when she's not, I had to learn with that person. Its like split personalities. It'll take a while to adjust once you stop taking it as an affront to you, when it's (in my opinion) that its their fear of losing themselves, and control of their lives. I hope this helps a little
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Gerip1092 Aug 2, 2018
You nailed it exactly, total Sybil at times! It is very hard to see a parent that way and you are correct, you have to remind yourself, it is not them, it is the disease.... I have also noticed the "sundowning" effects - gets confused, agitated and upset towards later in the day. It does take a while to adjust, you never know what you are walking into...
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I have to agree with tornadojan, screaming is bad for you and for your loved one and it never helps, it just makes things worse for both. You need to walk away and count to 10 when you feel yourself losing it. Take deep breaths or say a prayer. Also try to figure out your anger trigger so you can diffuse it. Figure out a better way to do things that are making you upset. Are you upset bc they can’t do what you are asking them? Think about how hard iit is for them and maybe feel compassion instead of anger. Daily pill taking with my mom and I had become a screaming match, then my brother suggested I crush the pills into some apple sauce with a little added sugar and cinnamon and NOW I never have a problem with pills any more. I use to get really upset when she would dump her spoon on herself so I started getting baby spoons for her and now she can hold them much better and dumps less food. I had to realize that I can’t expect her to be rational or do everything I need so now I just take a deep breath, count to 10 or walk away for a few minutes. Sometimes I even sit in my room and cry for a minute if I have to. Just know you are better than that and your loved one deserves better also. Imagine yourself on camera at all times or like you were watching someone else care for your loved one the way you are, it helps keep your actions in check. You would be furious if you saw a health care provider yell at your loved one, you feel ashamed if a friend or family member saw you yell, so these thoughts help me keep myself in check. Good luck. You are not alone.
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dlpandjep Aug 3, 2018
Bless you. You are so right. Sometimes I feel like I've lost myself and that's a frightening feeling. I just don't have the patience you have. I will try to remember "the camera."
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Yes I can relate. My mil says and does things, and even though I know it's the disease, I have to have a comeback. Yesterday, she said that she hoped my husband and I would die soon. My response was "We all will, sooner or later. " Awful, I know.

Good luck to you!

Sorry, but I am very blunt and to the point. And she is always into something.
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dlpandjep Jul 31, 2018
If you're awful, then I'm worse. Sounds like you're just tired, if not a little cynical. My Mother is into everything and when she gets something in her hand, there's no getting it out!

Thank you for commenting.
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