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Gershun, I know what you mean but I did not mean it that way. With my Dad I had that kind of "purer" grief and heartbreak for sure. There were the bittersweet visits where he was clearly the same person inside that he had always been but could do so little for himself, and even some of his confabulated memories reflected happy things he had always wanted and maybe had never really shared.... There's just something more - I don't know how to say it - but "normally" sad about caring for the one you had a good life story and relationship with it, versus the guilt, the inadequacy, and the longing that will never be fulfilled with the one whose relationship was always conficted and all hope of positive change towards more closeness, pride or real positive feeling is gone. Maybe it is only the difference between a knife in your heart and a knife being twisted around in your chest!
Send - that was perfect. And - one of my favorite movie quotes. There is profound wisdom in "Whatever else anything is, it ought to begin by being personal".
You've both said it so well. My dad was a pacifist his whole life. But watching him decline since the stroke was one of the toughest things ever. It did slowly zap the life out of him. He was grumpy. I tried to make it right but it wasn't good enough. It is hard not to take it personally. I wanted my dad to stay alive and he was giving up on me. I couldn't accept it and I kept trying and trying. I wish I had found the support of this forum much sooner. The support here has been amazing.
You've Got Mail, movie quote: Joe Fox: It wasn't... personal. Kathleen Kelly: What is that supposed to mean? I am so sick of that. All that means is that it wasn't personal to you. But it was personal to me. It's *personal* to a lot of people. And what's so wrong with being personal, anyway? Joe Fox: Uh, nothing. Kathleen Kelly: Whatever else anything is, it ought to begin by being personal.
You could make the argument that "elder care" could also be called "pre death care." We're caring for people in decline, for Loved Ones whose lives will be ending. That's tough, sad, and heartbreaking all on its own, whether the person is loving or the person is not so loving.
vstefans, I disagree. Where there is love and caring also comes heartbreak. Sometimes, even more...........when someone you love so much is suddenly or in some cases slowly and painfully ripped from your life because of dementia, heart disease, and all the other ravages of aging you need the support just as much.
The bit about fewer pix of each kid is almost a stereotype, it is so normal... but an abusive, neglectful childhood experience, of course, is not. The truth is any of could have had that - there is no more virtue in those of us who were raised with loving kindness than those of us who were not, or those of us raised with a mix of cruelty and caring. Always remember that there are more of us in the latter two groups on here just because our caregiving experience is so much more difficult and emotionally laden. The many families where there is less dysfunction to start with - where people may not be perfect but more or less think rationally and stick up for each other - may not need this site quite as badly!
Jessie, it occurs to me that there is a significant difference in caring for people who have been or are abusive, and caring for someone with whom you have had a loving and healthy relationship.
I think most of us recognize that people who have dementia and people with no cognitive impairment are two separate groups. Caregiving advice for one group may not be applicable to the other group.
I'm beginning to think there is a similar divide between care receivers who have been/are abusive and those who have had a healthy relationship with the caregiver. Advice for one group does not necessarily apply to the other group.
When it comes to caregiving, one size advice does not fit all!
I thought about this question this morning and realized there is no way to not take things personally. If someone cares for an abusive person all the time, telling them not to take it personally would be saying to ignore their life. Not taking things personally would mean to take a professional approach. Professionals, however, get to work in shifts and have no history with their client. Family caregivers are not afforded those luxuries.
We often refer to Teepa Snow, who has some very good techniques. However, Teepa is teaching professionals who work in shifts. We can employ these techniques, but we can't consume our whole lives serving one person who is difficult. If it went on for a year, then okay. If it goes on for 10-20 years, not okay. Sometimes we have to take things personally if we want to have any quality of life at all.
MsMadge, I got a laugh out of the sentence your mother chose to write! It reminded me of a recent FaceBook post by a young woman home schooling her three children. Her youngest daughter had been out of sorts and acting up. She said to her, "Honey, you seem very angry. Why don't you draw a picture to show how angry you feel?" And she drew an ugly lady and captioned it Farty Mother. At her age that was probably the worst word she could think of!
Rainmom, no, my mother never said cruel things to me -- ever, before or during dementia. As far as I know she didn't say cruel things to my sister with whom she lived for a year. She was very confused and forgetful with dementia but it did not change her basic kind personality. So I never had to say to myself, "Don't take it personally, it is the disease talking."
My husband went through a period of paranoia, mostly directed against me. I was holding him against his will. I was stealing his money. I stole his car, and on and on. I knew, and reminded myself often, that he would not be saying these things if his brain were healthy. But it was very hard to hear those accusations, and I'm glad they only lasted a few months. I'm not sure I could have retained my calm if that had gone on the full ten years! Or maybe I would have gotten so used to it that it wouldn't have bothered me. Who knows?
Like my mother, my husband retained his basic personality throughout his journey with dementia, with a few side trips into paranoia and delusions now and then. Even on hospice, he remembered to say thank you when the nurse did anything for him.
So, Rainmom, it is easy for me to say, "Don't take it personally. Your loved one has a damaged brain." I have had very little personal experience with cruel remarks. I have had to rise above a lot during dementia caregiving, but there has really not been anything I've had to forgive.
My mother was kind and patient and taught us to look at things from the other person's perspective. My husband was kind and patient and not remotely abusive in word or deed. I think (how could I know?) that it is much easier to overlook and not take offenses personally when they are obviously out of character.
Ali, I'm so sorry you are having such a bad night. Wouldn't life be so much easier if we didn't care (about anything?) Mind you, I've thought that but then I would have missed the loving relationship I had with my Mom. I guess I am one of the lucky ones who had a loving and kind Mother. I don't think I could have gone through what I did with her if I hadn't had that kind of friendship with her. More power to you if you can. I know my Mom loved me, probably not in the same way I loved her though. She was my everything. Not healthy in a lot of ways. But ah well............it was what it was.
I understand the hurt you feel Ali. Maybe not in the same way. I received my hurt at the hands of bullies all through elementary and high school and then went on to continue it at the hands of numerous, unhealthy relationships I got into because of the low self -esteem all the bullying growing up instilled in me. I've never understood why I was bullied. Probably cause I was ultra-sensitive and plus I was different. At age 11 I had grown to my full height of 5'10" and I was anorexic so very skinny and I had bad skin. So, I was a perfect target for mean kids I guess. Hubs and I rented a movie last night. There was this kid who had autism. His Dad said to him. People don't hate you, they are scared of you cause you are different. I've always been different but I kind of like that about myself now.
Anyway Ali, this is all apropos of nothing. I guess I'm just trying to say I relate to your hurt at the hands of insensitive people. It's sad to say but my Mom's dying wish was that the family would come together and be close after she died. I tried to instigate it a few times in the last two years, but if anything, we are further apart. Partly, cause there is still so much resentment on my part for the lack of caring and help my siblings gave me through my whole caregiving experience with Mom and also cause they just don't seem that interested in keeping up relations. I'm cutting ties with my narc sister cause I just think I'm better off without that energy in my life. As for the rest of them, if they don't want to meet me halfway, well I did my part.
P.s. I take everything about my family relationships and caregiving personally. My family/parents were the first ones to define me in this life, and now I've put myself in the position to allow them to define me yet again. Their definitions hurt. I do take it personally. I wish like heck I didn't. So yeah, it'd be great to know how Jeanne does it -- manages to see the positive and keep giving to others in need regardless of how they treated her.
:) It's been a week/weekend for me. I want to talk about it but I don't know how sometimes to get it out, or if I even want to, so I just distract myself with other people's business. I think discussion about these all-important issues is wonderful. I wonder whether or not I'd have lived through the past 5 years of full time caregiving without the open and honest discussion on AC. Who knows, but I'm grateful for AC and I have made it out alive so far... but not really "so good."
Hows about I stop talking about anyone else besides myself? But then I feel self centered for that.
I'm very sad right now. I saw a file earlier tonight, mostly handwritten notes my brother wrote about me around the time just before and just after my grandmother's death in 2012. It was such a hard time, life changing time for me. I feel like I've been trying to prove something to others ever since then. I felt sick to see myself judged on paper by a brother, during a time I was going through the sh!tstorm of my life so far. I suppose I better figure out how to get some distance from it all. It's weird: my daily responsibilities for my dad's care have lessened and I can't seem to let go of anger and hurt. I think I have to truly move on for that to happen. Move on to a career/job, my own life again, maybe even a kind sig other to share it all with.
I'm having the kind of night where benzos don't help all that much. Taking a Valium while your heart hurts -- the med doesn't really help that much.
I know pain. I know self doubt and self criticism and self hatred. I like it when people on AC talk about positive viewpoints. Makes me feel like people aren't really that bad, and maybe I just got a little unlucky, and some others have it so much worse. "Pollyanna"... yeah... What's so wrong with Pollyanna mindset, anyway? G'night. Hugs.
Dementia is an awful disease and even if a person was once sweet they will say horrific things and usually to the person who is there day in and day out trying to make things better or at least not any worst
Yesterday a nurse did an annual assessment for my mom for her long term care coverage - she had met us a year ago when my mom first moved to memory care but spoke to us separately
Yesterday I stayed with mom during the assessment - the nurse had a standard list to go through and one task was for mom to write a sentence - mom asked what she should write and the nurse said anything you like So Mom says, MsMadge is an @$$hole
Now whether or not she believes that - I choose to believe she doesn't - I know it is the dementia talking- But I have to say there were some very bad periods in her demented journey which seemed to last forever and in looking back I'm not sure how we made it through that time
AliBo - poor jeannegibbs, she hasn't even responded and you and I are having a conversation regarding her. Kinda like talking about someone when they're sitting right next to you.
Anyhoo- yes, I am truly looking to understand an opinion or perspective and am wondering about any history that is or isn't contributing to it. I am intrigued by jeannegibbs ability to rise above, forgive, look beyond- whatever it is that has shaped the gracious nature of her compassion.
Maybe it's just a core value that developed throughout her life - that doesn't have anything to do with having first hand experience. But maybe it is from first hand experienced and she is in the blessed minority of people who can honestly "not take it personal" - the topic of this discussion.
Since this thread falls under the "discussion" heading - I'm hoping that it's okay for me to ask the question and explore the origins and motivation - for lack of a better word - behind the answer.
Rainmom, I get you're asking for perspective... I'm just commenting/distracting myself out of an anxiety attack and into, hopefully, sleep. So I butted in. I'm bad about that sometimes. (Hopefully not excessively so!). Hugs to all the sorta sad/sorta resolved adult children of selfish, thoughtless, cruel, hateful parents.
Apropos of nothing... I'm personally thankful for people as optimistic and loving and practical as jeannegibbs who participate here on AC. She helps me to understand what it could've been like without the hurtful negligence, etc, from infancy. Who wants to be in the "I was a child of abuse" club? Not me! But here we are...
I'm just curious, jeannegibbs- honestly- not trying to be nasty, just trying to understand other perspectives- but did your mother ever say to you that she hated you or wished you had never been born - or an equally cruel remark?
I think that there is a HUGE difference in dealing with a parent who has always shown love and was nurturing and a parent who was one or another abusive. Cwillie is right! I don't understand why an adult child is a hands-on caregiver to such a parent. That is just not healthy. But for people in that situation, how did you handle those hateful comments and actions before the dementia? Before you became a caregiver?
It is MUCH easier, I think, to understand that this is happening because of damage in the brain if it wasn't happening before the brain was damaged.
My mother also told me (many times) that she wished she'd never had children. She said that to me and I said back to her "Well, most of us wish you hadn't had any either" and she was SO shocked..I think to her it was a running theme--kids had ruined her life and it had never occurred to her that maybe we felt she'd ruined ours. At least that comment stopped. AS a parent, it is REALLY hard to hold anger and disappointment inside. To rage at a child when you are angry--but then to apologize and "make it right" is important. No one is perfect. But to hear that all your life--you start to believe you are truly worth nothing. How NOT to take it personally? When it's the MOST personal thing someone can say? You have to dig down deep and work on forgiving. You'll never forget, but maybe you'll learn better parenting skills. Maybe you'll be kinder for it. I don't know. Stop that cycle before it has a chance to go another generation. You have a right to feel what you feel--you're human. I find now that if I call mother out on mean comments, she quits. I think we were just quiet and acquiescent for way too long.
The opening statement I made at my father's funeral You can't make somebody love you the way you want them to. You either accept they love you the best they can, or they Don't, and Live your own life. Hard words to live by but the only way I could survive narcissism.
Just to clarify, I don't think the lack of pics of my younger bro is somehow "normal" due to my mom being simply too busy. She made extremely poor choices, put her kids at risk, gave us very little in the way of any feeling that we were worthwhile or protected... quite the opposite. I think my younger bro may have gotten the worst of it. By time he was born, only 3.5 years after older bro and me in the middle, any attention my mom had for her kids was gone, taken up elsewhere either by necessity or choice.
I've long described my situation as "not having parents." I have a mother and father, but I didn't have parents. I said that, understood that, even before I spent past years caregiving and being treated as "not much" all over again. It's hard on a person... it hurts. I don't think I could rationalize that it's "only dementia" if my parents experienced memory loss (they don't at present) and said hurtful things. They both do seem to have personality disorders, mental illness, and my dad has a lowered mental capacity since forever, but knowing those things on an intellectual level doesn't prevent hurt feelings I get due to their words/actions.
Like Rainmom said, I mentally get the idea but my emotions, at this point, have their own language, and my compassion is also worn too thin. Must I always be the giver and they are the takers? I just want away from my parents, just want to put a healthy distance in the relationships for my sake. (And they'll be fine, too.) It is complicated, and a unique situation to the individual. I try very hard to stay out of Pity Party Land and just do what needs to be done, but can't say I succeed much anymore at staying calm about things. I'm weary of one-way endless giving to my dad and SAD about my parents lack of ability to kind or caring. I don't expect "tv parents" (The Cleavers), but just people who care, however imperfectly. They can't seem to do it, never could, never will. That stinks. I also know I'm far from alone with that.
(And sorry for butting in on this thread, hah. I think I'm leaning towards too much indulging in my own story rather than participating in the thread topic, but sometimes... I don't have the words except to say what I've been through, and how I feel about it. One thing I'm most grateful to AC - for teaching me I'm not alone.)
I've just read through the comments and I want to say I think that there is a huge difference between a formerly loving parent who has become hateful and a parent who has always been that way, either overtly or covertly. No matter how far you have come and how "mature" your parent child relationships those old scars lurk just below the surface and wounds can easily be reopened. Our minds may understand that dementia may play a role but emotions are seldom logical. ((hugs)) to all
Being a reasonably intelligent person, my mind understands the disconnect between an emotion and the ability to appropriately express it - in a person with brain damage. I get it.
However, when it is ones own mother - the single person civilized society and the Hallmark store says is suspose to love you unconditionally - trotting out the "that's not mom - it's the disease" can be a bit more of a struggle. It can strike at the core of every insecurity- every moment of unworthiness you've ever felt.
Trust me - I KNOW the rationale. Perhaps I'm just not evolved enough to FEEL it... Or perhaps this is an over simplification of a more complex issue.
Those of you who are parents yourselves: Did your young child every say to you, "I hate you Mommy!" ? Maybe that hurts a bit. But usually we realize that the child doesn't even understand fully what that means. They are just frustrated and not yet able to express that feeling more exactly.
Elders with dementia are often in the same situation -- frustrated or angry and unable to express those feelings accurately. So "I wish you were never born" or "I hope you die!" come out. I think maybe in these situations we should give them a pass, for our own sake. Little kids say hurtful things they don't mean. So do persons with dementia.
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You've both said it so well. My dad was a pacifist his whole life. But watching him decline since the stroke was one of the toughest things ever. It did slowly zap the life out of him. He was grumpy. I tried to make it right but it wasn't good enough. It is hard not to take it personally. I wanted my dad to stay alive and he was giving up on me. I couldn't accept it and I kept trying and trying. I wish I had found the support of this forum much sooner. The support here has been amazing.
Joe Fox: It wasn't... personal.
Kathleen Kelly: What is that supposed to mean? I am so sick of that. All that means is that it wasn't personal to you. But it was personal to me. It's *personal* to a lot of people. And what's so wrong with being personal, anyway?
Joe Fox: Uh, nothing.
Kathleen Kelly: Whatever else anything is, it ought to begin by being personal.
I think most of us recognize that people who have dementia and people with no cognitive impairment are two separate groups. Caregiving advice for one group may not be applicable to the other group.
I'm beginning to think there is a similar divide between care receivers who have been/are abusive and those who have had a healthy relationship with the caregiver. Advice for one group does not necessarily apply to the other group.
When it comes to caregiving, one size advice does not fit all!
We often refer to Teepa Snow, who has some very good techniques. However, Teepa is teaching professionals who work in shifts. We can employ these techniques, but we can't consume our whole lives serving one person who is difficult. If it went on for a year, then okay. If it goes on for 10-20 years, not okay. Sometimes we have to take things personally if we want to have any quality of life at all.
My husband went through a period of paranoia, mostly directed against me. I was holding him against his will. I was stealing his money. I stole his car, and on and on. I knew, and reminded myself often, that he would not be saying these things if his brain were healthy. But it was very hard to hear those accusations, and I'm glad they only lasted a few months. I'm not sure I could have retained my calm if that had gone on the full ten years! Or maybe I would have gotten so used to it that it wouldn't have bothered me. Who knows?
Like my mother, my husband retained his basic personality throughout his journey with dementia, with a few side trips into paranoia and delusions now and then. Even on hospice, he remembered to say thank you when the nurse did anything for him.
So, Rainmom, it is easy for me to say, "Don't take it personally. Your loved one has a damaged brain." I have had very little personal experience with cruel remarks. I have had to rise above a lot during dementia caregiving, but there has really not been anything I've had to forgive.
My mother was kind and patient and taught us to look at things from the other person's perspective. My husband was kind and patient and not remotely abusive in word or deed. I think (how could I know?) that it is much easier to overlook and not take offenses personally when they are obviously out of character.
I understand the hurt you feel Ali. Maybe not in the same way. I received my hurt at the hands of bullies all through elementary and high school and then went on to continue it at the hands of numerous, unhealthy relationships I got into because of the low self -esteem all the bullying growing up instilled in me. I've never understood why I was bullied. Probably cause I was ultra-sensitive and plus I was different. At age 11 I had grown to my full height of 5'10" and I was anorexic so very skinny and I had bad skin. So, I was a perfect target for mean kids I guess. Hubs and I rented a movie last night. There was this kid who had autism. His Dad said to him. People don't hate you, they are scared of you cause you are different. I've always been different but I kind of like that about myself now.
Anyway Ali, this is all apropos of nothing. I guess I'm just trying to say I relate to your hurt at the hands of insensitive people. It's sad to say but my Mom's dying wish was that the family would come together and be close after she died. I tried to instigate it a few times in the last two years, but if anything, we are further apart. Partly, cause there is still so much resentment on my part for the lack of caring and help my siblings gave me through my whole caregiving experience with Mom and also cause they just don't seem that interested in keeping up relations. I'm cutting ties with my narc sister cause I just think I'm better off without that energy in my life. As for the rest of them, if they don't want to meet me halfway, well I did my part.
Hows about I stop talking about anyone else besides myself? But then I feel self centered for that.
I'm very sad right now. I saw a file earlier tonight, mostly handwritten notes my brother wrote about me around the time just before and just after my grandmother's death in 2012. It was such a hard time, life changing time for me. I feel like I've been trying to prove something to others ever since then. I felt sick to see myself judged on paper by a brother, during a time I was going through the sh!tstorm of my life so far. I suppose I better figure out how to get some distance from it all. It's weird: my daily responsibilities for my dad's care have lessened and I can't seem to let go of anger and hurt. I think I have to truly move on for that to happen. Move on to a career/job, my own life again, maybe even a kind sig other to share it all with.
I'm having the kind of night where benzos don't help all that much. Taking a Valium while your heart hurts -- the med doesn't really help that much.
I know pain. I know self doubt and self criticism and self hatred. I like it when people on AC talk about positive viewpoints. Makes me feel like people aren't really that bad, and maybe I just got a little unlucky, and some others have it so much worse. "Pollyanna"... yeah...
What's so wrong with Pollyanna mindset, anyway? G'night. Hugs.
Yesterday a nurse did an annual assessment for my mom for her long term care coverage - she had met us a year ago when my mom first moved to memory care but spoke to us separately
Yesterday I stayed with mom during the assessment - the nurse had a standard list to go through and one task was for mom to write a sentence - mom asked what she should write and the nurse said anything you like
So Mom says, MsMadge is an @$$hole
Now whether or not she believes that - I choose to believe she doesn't - I know it is the dementia talking- But I have to say there were some very bad periods in her demented journey which seemed to last forever and in looking back I'm not sure how we made it through that time
Anyhoo- yes, I am truly looking to understand an opinion or perspective and am wondering about any history that is or isn't contributing to it. I am intrigued by jeannegibbs ability to rise above, forgive, look beyond- whatever it is that has shaped the gracious nature of her compassion.
Maybe it's just a core value that developed throughout her life - that doesn't have anything to do with having first hand experience. But maybe it is from first hand experienced and she is in the blessed minority of people who can honestly "not take it personal" - the topic of this discussion.
Since this thread falls under the "discussion" heading - I'm hoping that it's okay for me to ask the question and explore the origins and motivation - for lack of a better word - behind the answer.
I think that there is a HUGE difference in dealing with a parent who has always shown love and was nurturing and a parent who was one or another abusive. Cwillie is right! I don't understand why an adult child is a hands-on caregiver to such a parent. That is just not healthy. But for people in that situation, how did you handle those hateful comments and actions before the dementia? Before you became a caregiver?
It is MUCH easier, I think, to understand that this is happening because of damage in the brain if it wasn't happening before the brain was damaged.
AS a parent, it is REALLY hard to hold anger and disappointment inside. To rage at a child when you are angry--but then to apologize and "make it right" is important. No one is perfect. But to hear that all your life--you start to believe you are truly worth nothing. How NOT to take it personally? When it's the MOST personal thing someone can say? You have to dig down deep and work on forgiving. You'll never forget, but maybe you'll learn better parenting skills. Maybe you'll be kinder for it. I don't know. Stop that cycle before it has a chance to go another generation.
You have a right to feel what you feel--you're human. I find now that if I call mother out on mean comments, she quits. I think we were just quiet and acquiescent for way too long.
You can't make somebody love you the way you want them to.
You either accept they love you the best they can, or they Don't, and
Live your own life.
Hard words to live by but the only way I could survive narcissism.
I've long described my situation as "not having parents." I have a mother and father, but I didn't have parents. I said that, understood that, even before I spent past years caregiving and being treated as "not much" all over again. It's hard on a person... it hurts. I don't think I could rationalize that it's "only dementia" if my parents experienced memory loss (they don't at present) and said hurtful things. They both do seem to have personality disorders, mental illness, and my dad has a lowered mental capacity since forever, but knowing those things on an intellectual level doesn't prevent hurt feelings I get due to their words/actions.
Like Rainmom said, I mentally get the idea but my emotions, at this point, have their own language, and my compassion is also worn too thin. Must I always be the giver and they are the takers? I just want away from my parents, just want to put a healthy distance in the relationships for my sake. (And they'll be fine, too.) It is complicated, and a unique situation to the individual. I try very hard to stay out of Pity Party Land and just do what needs to be done, but can't say I succeed much anymore at staying calm about things. I'm weary of one-way endless giving to my dad and SAD about my parents lack of ability to kind or caring. I don't expect "tv parents" (The Cleavers), but just people who care, however imperfectly. They can't seem to do it, never could, never will. That stinks. I also know I'm far from alone with that.
(And sorry for butting in on this thread, hah. I think I'm leaning towards too much indulging in my own story rather than participating in the thread topic, but sometimes... I don't have the words except to say what I've been through, and how I feel about it. One thing I'm most grateful to AC - for teaching me I'm not alone.)
However, when it is ones own mother - the single person civilized society and the Hallmark store says is suspose to love you unconditionally - trotting out the "that's not mom - it's the disease" can be a bit more of a struggle. It can strike at the core of every insecurity- every moment of unworthiness you've ever felt.
Trust me - I KNOW the rationale. Perhaps I'm just not evolved enough to FEEL it... Or perhaps this is an over simplification of a more complex issue.
Elders with dementia are often in the same situation -- frustrated or angry and unable to express those feelings accurately. So "I wish you were never born" or "I hope you die!" come out. I think maybe in these situations we should give them a pass, for our own sake. Little kids say hurtful things they don't mean. So do persons with dementia.