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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.
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.
You're using it! Just click over the thumbs up and it will increase the number to show how many people agree/like the response they just read. Even when we feel alone, there are so many of us out there dealing with the same things.
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.
I had guardianship over a relative and I was not even caring for her in my home. I think the most frustrating thing is that you NEVER know what to expect. Every week (and sometimes every day) brings something horrible.
She was first in a MC facility and then after multiple falls and a broken kneecap, was in a SNF. She stopped eating. Every single day, my phone rang with a new problem. It got to the point I would jump out of my skin whenever the phone rang because it was ALWAYS bad news. And just when you think maybe you are getting a handle on one issue, the phone rings off the hook with 3 more issues.
My entire days were filled with dealing with the latest issue of her and then whenever I would return home, I was fighting battles with Medicare and her insurance on the phone and on the computer. (I want to add that HIPPA has made things so much more complicated). There were multiple days that I got in my car and SCREAMED the entire drive to and from the SNF.
I consumed a lot of wine during those months as well.
Oh, to the lady who mentioned her mom brushing her hair out - my aunt had some type of OCD along with her alzheimer's. She picked at her arms, face and head constantly. She refused to allow anyone to wash her hair for over a month. Her sister finally got her to agree to go to the beauty salon. They gave her a good scalp treatment and fixed her hair lovely. Within an hour she had torn up her hairdo by dragging her hands through her hair and picking. She had her face and arms looking like those photos you see of people hooked on meth with scabs all over. Her sister cried after every visit.
I do not know how in the world caregivers do it for years in their homes, especially dealing with feces. That would be the end of it for me.
Cleaning up bowel movements will be my last straw, too. The very idea of a loved one pooping in their Depends and then sitting in it for hours had me cringing and shuddering. We're headed that direction with my Mom, and she has yet to admit the possibility that she might need incontinace products. But I KNOW. I do her laundry.
I can relate. I have a 98 year old mother in a NH and I visit perhaps three times a week. I have cut back for my own health. I used to visit her every day and sometimes twice a day. I felt guilty because we had to remove her from her home. Ive accepted the fact that I had no choice but I will always feel guilt till the day I die. No siblings close by to help with mom. Yesterday I went to visit her and the activity that day had been a glitter project. There was glitter everywhere on her and on her wheelchair and .....just everywhere. That did not put me in a good mood....having to clean up glitter.....which I hate. But she had just gotten her weekly hair appointment done and her hair looked so pretty but I caught her in the bathroom brushing and brushing and brushing her hair and her pretty hairdo was ruined. I lost it. First glitter and now this! I loudly scolded her for brushing her hair out (she always does this) and she insisted she didn’t have her hair done that day and I found myself arguing the fact that she had. She had hurt feelings, I felt horrible. I feel I’m only human sometimes I have a breaking point....the glitter really did me in. Don’t be hard on yourself for losing patience. It happens to everyone that deals with dementia patients. We’re human.
My mother had LBD, she would try my patience on a daily basis. I would yell too sometime. She would forget about it soon enough. But I knew she couldn't help it so I tried to be understanding and kind. She would hallucinate and try to convince me it was real. Finally I went along with it. It was easier. I think I was angry that she had this horrible disease, and seeing her suffer was just too much for me to bear at times.
I was just writing to a friend telling the exact same thing for me I get up at 330 every morning to grieve were no one can see me then I pray and go running mom has vascular dementia and I’m sole caregiver for the last 3yrs then I come home and start the day I take every where I go now just so we can be together
This is off topic but I need help. With this new format on agingcare.com, it doesn’t give me the full story that is posted. I don’t see anything but a few sentences and obviously I’m missing information based on what other posters are writing in their answers. Help!
This is like a roller coaster ride...one minute you’re coasting and the next you’re on the way down yelling internally or sometimes externally. I’ve lost it a couple of times with my dad. Once I went out in a downpour during rush hour to get his. Hearing aids fixed and to buy him a pizza he asked for and when I brought it back he turned his nose up at it!! Then asked how he was supposed to eat it and I said with your hands like normal! Then he wanted a fork and I was just so put out, I stomped out and told a staff person to get him a fork and left him. I had had it!! When it’s family, it’s hard not to take it personally especially when you’re doing all you can do. So forgive yourself...because guess what, you aren’t perfect. many times I’ve gone to my car after a visit and let out my frustrations and that is a good way. We can’t bottle it up.
I lost it once with my dad. I am also generally laid back. I was trying to get him a pair of shoes for a diabetic and he kept saying he didn't want them. I lost my temper and stomped out. Sat outside for half an hour. Finally felt calmed down enough. Went back to his room and we hugged.
Do the best you can. Take breaks whenever you can.
My heart is in my boots for you. I only wish I couldn't relate.
How do you cope? - what can you do? You can't un-scream!
You can:
Identify triggers, and see if there is any way of preventing or dodging them - extra help, breathing exercises, a change in routine so that you're not doing something time-critical when you're already exhausted.
Give your mother an extra hug for no obvious reason.
Resolve to do better. This helped me - listening to myself, and imagining how I would react if someone else had spoken to my mother the way I had done (i.e., I'd have punched them). Careful, because this can make you feel worse in the short-term; but it can help you avoid repeating the mistake.
Looking ahead, that is quite a lot of caregiving that you're trying to handle, you know. Any thoughts about how you might share the load more fairly in future?
I've given this a lot of thought. You see, my husband is disabled and can no longer help me around the house. He's broken down his bed twice and it has to be fixed before he can sleep in it. It is a Sleep Number bed, so it is very heavy and I had to lift and readjust and right in the middle of my struggle, my Mother wanted to talk - I asked her to leave me be, but she kept on... that's when I lost it. I wasn't angry with her, it was the situation with the bed! How sad that I took it out on her. Thank you for your kind comment.
I coped by apologizing right after I was through ranting and raving.
I explained to my DH that it was the frustration of not knowing what to do that got me screaming and cussing. He understood and accepted my apologies. With me, this happened when he'd fall and I'd have to get him up - the last 6 months I would have to call for assistance and it wasn't always handy to call a neighbor - hence the frustration and the rest. I was told you can call the Fire Department but the phone numbers were disconnected. If you call 911 they send an ambulance and it isn't free. I kept asking for a Hoyer Lift but I only received it 2 weeks before he passed. I used it 6 times in 10 days and really needed it 2 months earlier when I had started asking for it.
Anyway, apologize - the sooner the better, for all involved.
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.
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☺
i just got back from a visit with my mom(dementia) at her AL. Not only do I get tired from repeating what I just said. then I start speaking LOUDER, as if that helps.
haha then my mom says, IM NOT deaf.
But pretty sure.... she's also a little hard of hearing
cause I said "my poor kidneys, I need to drink more water" and she said "cant you give them some water when you get home?"
she thought I said kitties.
sometimes our visits are like ~WHO's on FIRST ~ Abbott: Who is on first! Costello: I'm asking YOU who's on first.
I come home tired..... my problem was I went to visit and I brought a bad attitude with me today :(
That’s too funny about the kittens. My FIL did the same thing about making you repeat five times and then saying you don’t have to yell. Have a good evening Wally.
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.
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.
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!
I know how you feel. I haven't yelled at my mother but I have yelled at my husband instead when he brings up something right after I had an encounter with my mother. Yes, I feel guilty. I don't feel like a very nice person. What I have discovered about myself is that I can't handle the daily hands-on caring part. That is why I have full-time caregivers who do that. I can handle the laundry, food preparation, finances, medical personnel coordination, and so forth, but I find it hard to listen to complaints from morning till night. How I respond to my mother is something I struggle with every singe day. Some days I can handle it by leaving the room, other times I feel compelled to respond to her accusation, although I know it never gets me anywhere. When I was working in the proposal field, people always said that I had a very calm manner and I was a help during stressful situations. But I never had to deal with a situation such as this. Every day is new day to start over. Tomorrow will always be better. All the best to you.
I am told its my "tone". I never screamed (not that I didn't feel like it) but I got angry. Didn't effect Mom, she was like a child but I felt bad.
You say ur caring for 3 people. Maybe its time for Mom to go to an AL or NH. Your profile says only Mom. How does Dad and Husband come in the picture. Its hard enough caring for one person with a good spouse, but to be responsible for 3? Maybe u have too much on ur plate.
My Dad has parkinson's, but he has his mind; my husband is on a walker and showing signs of dementia. I know I have too much on my plate, but right now, I need their financial help. Never dreamed I'd find myself in a situation like this. Taking it one day at a time. Thanks for your comment.
Yes, I did this too, and what's worse, that my kids remember that, so now I know, the best thing when you feel you are a seconds from screaming, just walk away. no other choice, I think. Its hard in such moments to say I love you, but its possible to walk away.
I think most caregivers have engaged in some behavior they wished they hadn't and feel guilty over. I haven't screamed at anyone yet but I have used an angry voice that's almost as bad. I take a few deep breathes, apologize and try to forgive myself. I try to figure out why I didn't control myself - for me that's usually pain and/or interrupted sleep combined with trying to do some task (cook dinner or replace the batteries in a toy) and more interruptions (usually the kids wanting something NOW).
Usually this is a sign you need some kind of respite. Short term I can usually fix a cup of coffee and walk out on the porch to "cool off" for 5 minutes. Most of the time a "mini-respite" later after everyone asleep works for me (long hot bath while reading a good book on my kindle is a favorite). Sometimes I need a longer break so I arrange for my brother to spend a afternoon with Mom so I can meet friends and go to a movie without watching the phone. Sometimes I arrange for my Mom to stay a day or two with her sister when the kids are visiting their Mom and I check into a local hotel with a nice jetted tub.
My experience is that the more regular your respite, the shorter they can be. If you can manage a short personal respite at least once a day and others once or twice a week when you can get away for a couple of hours you can cope well for a long time. Of course it also depends a lot on how intense the care giving requirements are. Coping with someone who's angry and uncooperative takes a lot more out of you than dealing with someone who is pleasant and cooperative even if they need more hands on care.
Sounds like you have a lot of experience. I know I need respite, but my Dad gets so upset when I leave him, that I can't relax. My Mother is a precious lady, just out of her mind. I think I've become the angry one. It's a frightening thought. All my life I was the "laid back" one. Thank you for your comment.
I can relate. I did the same thing yesterday to my husband with Alzheimer's. I lost it after trying for a couple of hours to get him to take a shower or get dressed so I could take him to his doctor's appointment. I called him stupid and slammed the door on my way out of the room. He doesn't remember the incident but I still feel guilty. That is the second doctor's appointment in a month that I had to cancel.
Many here will tell you that you are just human and we all can "lose it" at times. You've got to forgive yourself and move on. There will probably be other times where your patience will be tested. I'm hoping I'll do better next time.
We are just human and stress can take us places we never though we'd go... but our words are powerful. They can harm or even destroy. The hardest part is that these are my parents. I love them dearly and it's so hard. I know it's hard for you too. I hope we both do better next time. Thank you.
I have also felt like monster for yelling at my Mom. I think it just takes practice to react a different way. -Walk away -Say I love you instead of yelling -Walk Away -Yell and come back and apologize (even though they don't remember)
I haven't mastered quite mastered not yelling sometimes, but sometimes I do a pretty good job keeping my cool.
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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.
I think the most frustrating thing is that you NEVER know what to expect. Every week (and sometimes every day) brings something horrible.
She was first in a MC facility and then after multiple falls and a broken kneecap, was in a SNF. She stopped eating. Every single day, my phone rang with a new problem. It got to the point I would jump out of my skin whenever the phone rang because it was ALWAYS bad news. And just when you think maybe you are getting a handle on one issue, the phone rings off the hook with 3 more issues.
My entire days were filled with dealing with the latest issue of her and then whenever I would return home, I was fighting battles with Medicare and her insurance on the phone and on the computer. (I want to add that HIPPA has made things so much more complicated). There were multiple days that I got in my car and SCREAMED the entire drive to and from the SNF.
I consumed a lot of wine during those months as well.
Oh, to the lady who mentioned her mom brushing her hair out - my aunt had some type of OCD along with her alzheimer's. She picked at her arms, face and head constantly. She refused to allow anyone to wash her hair for over a month. Her sister finally got her to agree to go to the beauty salon. They gave her a good scalp treatment and fixed her hair lovely. Within an hour she had torn up her hairdo by dragging her hands through her hair and picking. She had her face and arms looking like those photos you see of people hooked on meth with scabs all over. Her sister cried after every visit.
I do not know how in the world caregivers do it for years in their homes, especially dealing with feces. That would be the end of it for me.
So forgive yourself...because guess what, you aren’t perfect.
many times I’ve gone to my car after a visit and let out my frustrations and that is a good way. We can’t bottle it up.
Do the best you can. Take breaks whenever you can.
How do you cope? - what can you do? You can't un-scream!
You can:
Identify triggers, and see if there is any way of preventing or dodging them - extra help, breathing exercises, a change in routine so that you're not doing something time-critical when you're already exhausted.
Give your mother an extra hug for no obvious reason.
Resolve to do better. This helped me - listening to myself, and imagining how I would react if someone else had spoken to my mother the way I had done (i.e., I'd have punched them). Careful, because this can make you feel worse in the short-term; but it can help you avoid repeating the mistake.
Looking ahead, that is quite a lot of caregiving that you're trying to handle, you know. Any thoughts about how you might share the load more fairly in future?
Thank you for your kind comment.
I explained to my DH that it was the frustration of not knowing what to do that got me screaming and cussing. He understood and accepted my apologies. With me, this happened when he'd fall and I'd have to get him up - the last 6 months I would have to call for assistance and it wasn't always handy to call a neighbor - hence the frustration and the rest. I was told you can call the Fire Department but the phone numbers were disconnected. If you call 911 they send an ambulance and it isn't free. I kept asking for a Hoyer Lift but I only received it 2 weeks before he passed. I used it 6 times in 10 days and really needed it 2 months earlier when I had started asking for it.
Anyway, apologize - the sooner the better, for all involved.
Not only do I get tired from repeating what I just said. then I start speaking LOUDER, as if that helps.
haha then my mom says, IM NOT deaf.
But pretty sure.... she's also a little hard of hearing
cause I said "my poor kidneys, I need to drink more water"
and she said "cant you give them some water when you get home?"
she thought I said kitties.
sometimes our visits are like ~WHO's on FIRST ~
Abbott: Who is on first!
Costello: I'm asking YOU who's on first.
I come home tired.....
my problem was I went to visit and I brought a bad attitude with me today :(
and im not coping well, but I can relate.
Have a good evening Wally.
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.
Good luck to you!
Sorry, but I am very blunt and to the point. And she is always into something.
Thank you for commenting.
You say ur caring for 3 people. Maybe its time for Mom to go to an AL or NH. Your profile says only Mom. How does Dad and Husband come in the picture. Its hard enough caring for one person with a good spouse, but to be responsible for 3? Maybe u have too much on ur plate.
Usually this is a sign you need some kind of respite. Short term I can usually fix a cup of coffee and walk out on the porch to "cool off" for 5 minutes. Most of the time a "mini-respite" later after everyone asleep works for me (long hot bath while reading a good book on my kindle is a favorite). Sometimes I need a longer break so I arrange for my brother to spend a afternoon with Mom so I can meet friends and go to a movie without watching the phone. Sometimes I arrange for my Mom to stay a day or two with her sister when the kids are visiting their Mom and I check into a local hotel with a nice jetted tub.
My experience is that the more regular your respite, the shorter they can be. If you can manage a short personal respite at least once a day and others once or twice a week when you can get away for a couple of hours you can cope well for a long time. Of course it also depends a lot on how intense the care giving requirements are. Coping with someone who's angry and uncooperative takes a lot more out of you than dealing with someone who is pleasant and cooperative even if they need more hands on care.
Thank you for your comment.
Many here will tell you that you are just human and we all can "lose it" at times. You've got to forgive yourself and move on. There will probably be other times where your patience will be tested. I'm hoping I'll do better next time.
Thank you.
-Walk away
-Say I love you instead of yelling
-Walk Away
-Yell and come back and apologize (even though they don't remember)
I haven't mastered quite mastered not yelling sometimes, but sometimes I do a pretty good job keeping my cool.
I don't know how to use this site, or use the "helpful answer" but, right now it feels good to know I'm not alone.