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I am curious to find out what two or three things in the life of a caregiver seem to create the highest level of guilt and what are the successful ways to deal with the associated guilt?
Losing my temper. The only way to deal with it is to forgive myself for being human and to ensure I get as much help and time away as possible to help keep burnout at arms length.
That's a very amusing question. I would be interested to know too. It seems that guilt is a very pervasive emotion that a vast number of caregivers seem to have. It really baffles me why loving caretakers harbor such a painful emotion, when they are knocking themselves out giving care to their family members. Many give up their outside interests and activities, sacrifice financially, and endure enormous stress and sleep deprivation to care for a loved one who has dementia or is otherwise disabled, but, then they top if off with feelings of guilt, even though they are doing their very best. As Cwillie says, it's good to be reasonable about the matter. I mean you are only human. When you're doing your best, why feel guilt? I suppose it's a psychological phenomena like survivors guilt. It's not rational, but, still exist.
I won't question people's emotions, but, I sometimes wonder if what is labeled guilt is actually anger, worry, pain or disappointment. I suppose that I'm fortunate, as I have always done what I thought was right for my LO and put her need as my top priority. I'm not perfect, but, I have never felt guilt, because I know my heart is in the right place, I work hard, devote my time, do my research, act as her advocate and seek the best for her.
Feeling anger. There is no set way to handle it other than to stay away as much as I can. This is not easy to do, since I live in my mother's house. I have to do a lot of self soothing. If someone isn't good at self soothing I would tell them to never try being a caregiver.
Just read what you wrote, sunny. It is very simple to feel guilty about feeling angry. If we were better people we wouldn't harbor feelings like anger and resentment. But we fall short of those perfect people marks. And it is our parents. That is why we feel guilt about not being totally loving all the time. Is it logical? No. But it is the way it is.
Oh, my! I feel guilty whenever I say "no" to my mother, and she plays on that too. This week my mother and I had to postpone our regular trip to the library and Walmart because she was sick. Now that she's starting to feel better, she wants to go right now. Today. Friday. Even though I told her that Friday was the only day I couldn't take her because I had a podiatrist appointment. She's like "Well, I guess if it has to be Saturday, it has to be Saturday. I sure hope I don't run out of books before then." She has a way of communicating the idea that if she doesn't get exactly what she wants when she wants it, it's a major tragedy. And on some level I always buy into it and feel responsible, even though I know it's nonsense. Aaaarrrggghhh!!!
Maybe I simply don't have a conscience, because there wasn't a lot of guilt associated with caregiving for me. Losing my temper did make me feel guilty, as it should. It is OK to feel guilty when you do something wrong. That will probably help reduce how often it happens in the future. (That is the legitimate purpose of guilt, right?)
When I lost my temper I apologized. I hugged him. I assured him that I loved him and it was the darn disease that I hated.
Maybe I didn't feel guilt much because I recognized other feelings: anger, regret, powerlessness, frustration. I'm not saying I didn't have painful feelings as a caregiver -- but usually it was not guilt.
I had a lot of people -- family, friends, the doctors, a caregiver support group -- to tell me over and over what a great job I was doing. I'm sure that helped a lot. My heart really goes out to those who have people trying hard to make them feel guilty and who point out everything "wrong." I'm afraid it would take more strength than I have not to be an emotional mess in that situation.
I'd have to say frustration while watching formerly competent people just lose their desire to do anything for themselves. Yes 89 is very aged, but I have friends in their nineties that are still making an effort at LIVING to the best of their ability. My mom can no longer feed herself due to severe sight loss, but my dad sits there while a caregiver or myself feeds her. She's HIS wife and he is still able to do those things for himself and I sit thinking, "she's your wife, why don't you take care of her as best you can". there, got that out. Thanks for the place to vent. (I'll have to note that this man was the "breadwinner" in his working years and was never expected to care for us kids or mom so honestly it just may not occur to him). That's just one of many things that raise guilt in me.
Ditto jeannegibbs comments. I don't feel guilt. Although it is terribly difficult to be a caregiver of a spouse who has Alz, frontal temporal dementia and ALS, I consider it an honor to be able to care for him at home - someone who gave me the best of his life and someone I know would do the same for me. Sadness at seeing such a vibrant person lose his independence, memory and judgement, yes. Frustration at the fragmented healthcare system that makes mistakes and causes him pain and discomfort, yes. Disappointment in some members of our family that don't understand my husband as my first priority these days over them or their children, yes. Am I impatient at times, yes. But feelings of guilt or anger, no.
Not guilt so much, but resentment. Just when we are both retired and could do some fun things like travel, my husband "takes a powder" from life and I have to pick up the pieces. I have to remind myself often that I'm not the only one dealing with this; this is the row I'm destined to hoe; I am glad I can function and keep loving him. If I ever feel anger, it's against our friends who seem to have dropped us from their mind and never come to visit, so I feel lonely in this endeavor.
Guilt....loaded with it, continuously. Did I do my very best? Were there better options? Should I visit more often? Is she getting the best care possible, but the one that set off the most guilt and anger too was when Mom would accuse me of *stealing* from her when in fact she was taking nearly all my time and energy.
"Maybe I didn't feel guilt much because I recognized other feelings: anger, regret, powerlessness, frustration. I'm not saying I didn't have painful feelings as a caregiver -- but usually it was not guilt. "
Too many seem to be missing Jeannegibbs' main message. There are a lot of negative emotions that can accompany caregiving. Anger, frustration, second guessing, sorrow and remorse are not guilt, and not something to feel guilty about unless they cause you to behave unkindly.
When mom has a moment of clarity and calls me from the memory care facility and asks me to come pick her up - she wants to go home. This has happened three times in 6 months. When I visit her, she never asks me to take her home.
I feel guilty because I am the one who has made all the pertinent decisions for her. Sold her house, moved her with me, placed her in memory care etc. etc. When I feel guilty, I look back and realize that I did the very best I could; but that doesn't stop the heart break. In my experience; there is only sadness in end of life care and you really have to make peace with the decisions you make on behalf of another.
Disappointment first because now we will not be doing any of the things we had planned for retirement. Biggest mistake is to put off travel for 'later'. Because my spouse also has severe hearing loss, even with his hearing aids, I am raising my voice for all conversation. Anger because there is almost no communication/discussions/sharing thoughts. Getting him to do anything specific is very difficult since he doesn't understand instructions and probably isn't hearing them clearly anyway. We are fortunate in that he is very healthy otherwise and for now is able to continue his personal daily care.
Guilt on not being able to care at home. Hubby is 82 and I'm 79. He has accute kidney failure and is on dyalis,a fib,stroke 2 years ago,poor vision,mild dementia, etc. No longer safe for him to be alone due to physical disabilities. He is in a good rehab but still I feel guilty.
Carla, I read what you wrote about your mom and that's called "manipulation" and "try to guilt trip". You did the right thing setting your boundary (which you have every right to do) and saying that "good...Saturday it is then"...bye bye. I try very hard not to tag the word guilt on to what I might be feeling emotionally. Because if you read the definition of guilt...it means you did something wrong. So if I'm thinking to myself...well I haven't seen dad for a week....am I guilty? No...am I questioning why I haven't or if I should...then yes. The "shoulds" are the ones that can get you. If I am not doing anything that's harmful emotionally or physically to him then I am not guilty. We all have to deal with our own psychological make up and what we assign to our feelings about certain things. I also remind myself of all the things I am doing for him to make his life better and easier. Puts it in perspective. I am only responsible to him and not for him. My life has become less stressful as I've gone along. I realize this is not the take for everyone on this forum...but it is for me.
I choose to keep my mother in her own house. I would go over every morning and get her up and ready for her day, which consisted of her doing crossword puzzles. I always felt guilty because I never had time to sit and chat with her. I was too busy cleaning, giving her showers and setting up snacks for her during the day. I sometimes think she thought I was the housekeeper. She did have dementia.
I felt a tremendous amount of anger that my late mother had caused me to have to leave my home and move in with her, where she DEMANDED to live alone in her own home 400 miles away!!!! My family and I had tried to do some alternative measures as to where she would live 8 years prior! She said no to it all! She said "I'm so glad that I live in my own home." My response was "well, I am NOT because now you have lost the ability to choose" and she was not at all happy that I moved in with her for the last part of her life. She made me angry when I shouldn't have been. On a side note, my late mother kept in contact with a pedophile uncle of mine, who had abused me. I told her what he had done to me (in no uncertain terms) and she still communicated with the man until his death many years after the event. She said "why didn't you tell me" 100 times over!!!!!!!!!! I said "mother, I told you." It fell on deaf ears. I faulted my mother for that. Why didn't she protect her own daughter (me) by chewing this man out verbally, but instead her brother-in-law (the pedophile) was her friend?!!!!!!!!!!!
I agree completely with Jeannegibbs and mom2mom. Zero guilt. From the very beginning I knew this would be Mother and My last journey together and I set out to make it as fun and joyful as possible. Oh I know it is terrible trying at times and it would try You, but I counted up to 20 very slowly and by the time I got to 16 it was gone from My mind, and forgotten. We must keep reminding Ourselves that Our Elders are very vulnerable. They do not want to be dependant on Us, as They would prefer to be able to do for Themselves, but this is not possible due to age related illnesses. Think back not too long ago, Our Mothers were doing all this for Us willingly and with love, now We must Care for Our Parents.
Guilt-hmm that is a dynamite question. My guilt is when people talk to me about my mother and the problems we encounter and then people will say " honey you are doing a great job and you are wonderful to care for you mother". Then they say "you need to pray about it" and I honestly don't know what I'm suppose to pray about. I then feel guilty about "what am I praying for"?
quiltinrealtor, I understand what you are saying. When my mother lived in an apartment and was getting less able to take care of things, we arranged a needs assessment for her and two of my sisters attended that interview. Mom had a hard time admitting she needed help. She'd say "Yes, I can get my own meals." And a daughter would say, "Yes you can. But you can only use the microwave and you don't always have well-rounded meals. Plus it is getting harder for you to carry food across the room." She would also claim she didn't need help because she already had help. "Oh, I don't need help with the laundry/housekeeping/whatever because my daughters take care of that." And one of the daughters spoke up and said, "Mom we will always keep coming. But when we are here we want to play scrabble with you, or cards, or just sit and talk. We don't want to spend our time with you scrubbing toilets."
In a situation like that you either feel guilty about not spending enough one-on-one time with your loved one, or you feel guilty playing cards with them when you can see how dirty the carpet is.
My mother was eligible for (and got) Meals On Wheels, and housecleaning/laundry help. There was still an odd job or two to do while we were there, but this did give us more meaningful time with Mom. (And no guilt.)
After dealing with "Cognitive Impairment/Dementia" for 7 yrs now, I no longer feel guilt because I realize that the disease is the culprit not my mother!i feel frustration,sadness,pain for her,regret because sometimes I don't have all the answers.
That is a tough one to answer as there are sooo many emotions like others have pointed out. I've been caring for my paralyzed spouse for 10 years now and it's still hard to manage the guilt, anger, frustration etc etc....The emotions can definitely get the better of you at times and it seems the best solution is to mentally detach your self as best you can. Problem than is your loved one becomes more of a patient which can complicate the relationship as well. I have found that since I know my limits more than anyone it is my job to decide when to detach and go in robot mode. For me this is better than doing or saying something I regret later. My wife is the one with the hardest life to live and I hate my self for doing anything that makes her feel like a burden. Every event passes and so does the emotion. Sorry but no easy answer here but give yourself credit for knowing you are the best person to take care of your loved one and get comfort there.
I think the biggest guilt-inducer for me was having to place mom in a nursing home. I felt horrible. The first time she was in just for a rehab stay after a hospital stay, she called me every day, sometimes several times a day, sobbing, terrified and saying she was going to go crazy in there and would I please get her out and bring her home. It was awful. After she had to go in and stay permanently, she seemed resigned to the idea, but was very depressed for the rest of her life. There wasn't much laughter or happiness. She was just never herself again.
I had no guilt taking care of my husband. I did have regrets. I regretted that we did not do many of the things that we said we would do. I had sorrow. sorrow that his children were not closer. knowing that what I had to do for him would have killed him, he would not have wanted to live the way he was. He had always been a vital energetic person with a "can do " attitude. I had frustration. The most frustrating thing was finding caregivers to help me. Good, honest, caring people. the last 5 months I had 2 that were AMAZING. I am sorry I did not "discover" this way to find a caregiver sooner.
If I have any guilt it is now. I am busy, maybe too busy. Is this a way for me to not think about what I have lost or is it a way to make up for all the time that I cold not get out and do things. but guilt while I was taking care of him...NO. I could honestly go to bed at night knowing that I did the best that I could for that day. We guilt ourselves over things we can not control. You can not feel guilty if you place your loved one in Memory Care, Assisted Living, Nursing Home or anyplace. We all have the feeling that "I can take better care of....than anyone else" Well we have to get over that. If it comes to a point where for safety, yours or theirs, when you are so exhausted that you can't think straight, when they become too difficult to manage placing someone is doing the best and right thing for them and you. You can then become the loving daughter, son, wife, husband that you want to be and your roll as a caregiver steps back. You will always be an advocate but your roll changes.
Life is far too short for guilt or dwelling on regrets.
My guilt : Living and working and thriving as a single 50+ in California while my parents are in a nursing facility in Ohio. I have 3 brothers who are in Ohio, 2 of which are within 30 mins of the facility my mom(dementia) and dad (weak lungs/ etc) are. They are both 92 years old. Our family never had any type of strife or drama that estranged us. It's just that I started wandering with work and found the California outdoors to be very compelling. I've returned about 3x a year for last 2 years since they declined and had to enter the facility. I've assisted as I am able and am very appreciative of my brothers who did a lot of work to locate a really nice place and be able to place them in separate rooms. I have many days when i wonder- "shouldn't i be there ? closer ? Visiting every other day? Holding my mom who i can't communicate with in phone anymore due to now hearing issues? ". Am I being selfish? What's really important in life? What about duty? What about love? Respect? " is my career and etc here more important? I onew this day would come when i left Cleveland in 1992 for work reasons but I was only a few states away then. A half day drive. Out here I'm really separated. Wild West. I'm in a govt job with a pension and health care that improve with time. And im 15.5 years into that. 20years is my minimum goal for working for the state. But / is that more important than the people who raised me? When I visit now it's often 2 weeks and combined with business of shutting down their house they moved out of and buying them clothes or special foods and stuff. But ? Does it matter? My father is unhappy there- he's still mentally pretty competent and he's bored - there's not a lot of people able to talk or play cards. He and she always isolated themselves anyways so I kinda don't get what the difference is- he misses having his own "castle" but he's unable to keep a castle anymore. The improvements in his care allow him to feel this angst. He's cleaner, eating better and safer- and interacting with people (mainly staffers) but .. anyways- that's my guilt. Being away when I am capable of being there - I would just have to restart a life back there- and ? People all say it's foolish- but? Is it. Am I wanting to be dramatic or a martyr?
That's an interesting point KW. When we make choices we may second guess or feel regret at having to abandon the other option, but guilt can come into play when our decisions affect other people. Often there are no perfect choices, emotionally we have to weigh the good and the bad and decide what it is that we can live with, and logically decide what makes the most sense in the long term.
Thank God I can truly say I did not have guilt when my Journey as Carer to my dear Mother came to a sudden end. I wanted to Care for my Mom and I did not feel pressurised into it. How ever I will never forget how tough and demanding on One Self being a full time 24/7 Carer really is. Alzheimers is such a horrible disease of the brain. I did resent some Family members for a time as I got no relief but You just Soldier on as You have no other choice. I never moaned or wined, I just got on with it...same as all of You Carers. Sadly the great reward comes at the end when that beautiful Person Who You Loved and Cared has gone to Heaven, and You feel a gladness in Your Heart and are so over Joyed that We shared the Journey with the One We loved. Sometimer ditto. I had the same experience. Friends disappeared like mist and for the first time in my Life I felt so abandoned and alone. I put this down to Their inability in dealing with alzheimers. People haven't a clue how to react or deal with it, when all Thek need do is just be Themselves. Yes I agree this is Our calling, the drill We must plough, I guess We were destined to be Carers. Any how I'm so glad I did Care for Mom at home in Her own home where She felt such great contentment and peace.
Guilt guilt and more guilt...but learning to set boundaries...I do so much for mom, but want her to use free services available..such as staples she needs from the grocery store...free rx delivery...but she still manipulates me to do it when I take her out to dinner..dr apts...I set her up with transit for hair apts...if they cancel..she expects me to take her..I tell her...change your hair apt...so she's ticked and surly..and I stand firm..but feel quilts...oh well...very demanding
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The only way to deal with it is to forgive myself for being human and to ensure I get as much help and time away as possible to help keep burnout at arms length.
I won't question people's emotions, but, I sometimes wonder if what is labeled guilt is actually anger, worry, pain or disappointment. I suppose that I'm fortunate, as I have always done what I thought was right for my LO and put her need as my top priority. I'm not perfect, but, I have never felt guilt, because I know my heart is in the right place, I work hard, devote my time, do my research, act as her advocate and seek the best for her.
When I lost my temper I apologized. I hugged him. I assured him that I loved him and it was the darn disease that I hated.
Maybe I didn't feel guilt much because I recognized other feelings: anger, regret, powerlessness, frustration. I'm not saying I didn't have painful feelings as a caregiver -- but usually it was not guilt.
I had a lot of people -- family, friends, the doctors, a caregiver support group -- to tell me over and over what a great job I was doing. I'm sure that helped a lot. My heart really goes out to those who have people trying hard to make them feel guilty and who point out everything "wrong." I'm afraid it would take more strength than I have not to be an emotional mess in that situation.
Too many seem to be missing Jeannegibbs' main message. There are a lot of negative emotions that can accompany caregiving. Anger, frustration, second guessing, sorrow and remorse are not guilt, and not something to feel guilty about unless they cause you to behave unkindly.
I feel guilty because I am the one who has made all the pertinent decisions for her. Sold her house, moved her with me, placed her in memory care etc. etc.
When I feel guilty, I look back and realize that I did the very best I could; but that doesn't stop the heart break. In my experience; there is only sadness in end of life care and you really have to make peace with the decisions you make on behalf of another.
He is in a good rehab but still I feel guilty.
I try very hard not to tag the word guilt on to what I might be feeling emotionally. Because if you read the definition of guilt...it means you did something wrong. So if I'm thinking to myself...well I haven't seen dad for a week....am I guilty? No...am I questioning why I haven't or if I should...then yes. The "shoulds" are the ones that can get you. If I am not doing anything that's harmful emotionally or physically to him then I am not guilty. We all have to deal with our own psychological make up and what we assign to our feelings about certain things. I also remind myself of all the things I am doing for him to make his life better and easier. Puts it in perspective. I am only responsible to him and not for him. My life has become less stressful as I've gone along. I realize this is not the take for everyone on this forum...but it is for me.
In a situation like that you either feel guilty about not spending enough one-on-one time with your loved one, or you feel guilty playing cards with them when you can see how dirty the carpet is.
My mother was eligible for (and got) Meals On Wheels, and housecleaning/laundry help. There was still an odd job or two to do while we were there, but this did give us more meaningful time with Mom. (And no guilt.)
I did have regrets.
I regretted that we did not do many of the things that we said we would do.
I had sorrow.
sorrow that his children were not closer.
knowing that what I had to do for him would have killed him, he would not have wanted to live the way he was. He had always been a vital energetic person with a "can do " attitude.
I had frustration.
The most frustrating thing was finding caregivers to help me. Good, honest, caring people. the last 5 months I had 2 that were AMAZING. I am sorry I did not "discover" this way to find a caregiver sooner.
If I have any guilt it is now.
I am busy, maybe too busy. Is this a way for me to not think about what I have lost or is it a way to make up for all the time that I cold not get out and do things.
but guilt while I was taking care of him...NO. I could honestly go to bed at night knowing that I did the best that I could for that day.
We guilt ourselves over things we can not control.
You can not feel guilty if you place your loved one in Memory Care, Assisted Living, Nursing Home or anyplace. We all have the feeling that "I can take better care of....than anyone else" Well we have to get over that. If it comes to a point where for safety, yours or theirs, when you are so exhausted that you can't think straight, when they become too difficult to manage placing someone is doing the best and right thing for them and you. You can then become the loving daughter, son, wife, husband that you want to be and your roll as a caregiver steps back. You will always be an advocate but your roll changes.
Life is far too short for guilt or dwelling on regrets.
Sometimer ditto. I had the same experience. Friends disappeared like mist and for the first time in my Life I felt so abandoned and alone. I put this down to Their inability in dealing with alzheimers. People haven't a clue how to react or deal with it, when all Thek need do is just be Themselves. Yes I agree this is Our calling, the drill We must plough, I guess We were destined to be Carers. Any how I'm so glad I did Care for Mom at home in Her own home where She felt such great contentment and peace.