Bravo Bravo. Warm thanks for eloquently and with expertise composing and publishing your words. I will forward this to my family who criticize my caretaking while never once volunteering and with their drama make everything worse. Finally, someone how understands and can teach them without a stake in it all. Your words are valued. Thank you kindly.
My husband has terminal cancer and his children do home hospice and since he has out lived his expectancy they want me either to help out or get out the house, divorce or legal separation.. what can I do?
Thank you for this excellent insight. I now receive understanding from my small family but so called "professionals" on the other hand are quick to crucify one who does not meet their expectations. I am NOT here to meet their expectations but to care for my narcissistic sociopath of a mother. We are both still alive 16 years later so I'll give myself a pat on the back. "Well done good and faithful servant." The professionals can kiss my backside & may they reap what they sow.
We all indeed come from such diverse backgrounds and our situations, though similar in some ways, are also extremely different. I lived my entire adult life two and a half hours from my hometown and yet I left my job, lost my benefits and moved back home to care for my Mama, because all her family was here, I knew I could readjust, and as has been my standard MO my entire life, I knew I would "figure it out"....that being said, I have been criticized, ridiculed and told what a fool I was by so many "well meaning people" it has been unbelievable.
While I have been on this site a little while, I only began posting more over the course of the past few months, after Mama's last hospital visit seemed to amplify her dementia and early Alzheimers symptoms. Never have I felt so alone. I think the solitude of this is what is the most painful, so being able to come to this site and emote, vent, etc. and feel that I am not being judged has been helpful...sadly, of recent, it seems even in a caregiving community we experience some of the same judgments that we receive out in the "other world"....that is hard to understand. Of all folks who should understand caregiving, you'd hope that caregivers would be those who could. Perhaps that illuminates the issue even more, that if as caregivers, we also criticize each other and our choices, then folks out there aka the sidewalk superintendents (I love that by the way) are surely going to not understand.
Right after Mama fell, and I moved back home, and had to leave all my friends, I was speaking with one of those friends and she lit into me about how selfish my mother must be. She told me that she'd rather drown herself than to ruin her childs life as my Mother was doing. I quickly informed her that Mama would NEVER had asked this of me, that this was MY decision to move home and that one of the reasons I was doing so was because my Mama had spent her entire life being there for everyone, friends, family, strangers...and if anyone now deserved to have me here she did...good intentions, yes...I quickly learned I was in for a long, sad journey. Nonetheless, we are making it together. Mama is a blessing. Some days are magnificent, some days are hell on earth, most days are somewhere in the middle where I know I am, for now, right where I am meant to be. But it is my journey. It was my choice to do this. And I am glad I did. Some days I have pity parties...some days I think I know a lot. More days than not I find how much I still have to learn. I am appreciative of everyone's advice, however it is no ones right to judge me for whether I take it or simply read it for what it is, advice, and then do the best I can with what I have.
Thank you so much for this article. It certainly spoke to me this morning. And I hope I can be there for others in a similar situation, but I always hope I will convey my opinions and advice in a way that is helpful and never hurtful. It is hard enough for caregivers without adding more guilt, hurt, judgment ....thanks again Carol!!
Thank you Carol for this article. I meant to reply once it was published but life just got in the way. I so relate to Joannes and Paryogi. I am long-distance, too. I retired early to move across the country to "be there", but being there was never enough. I was supposed to apparently move back in, with my husband, and give up my life for them. They needed me infantilized in their universe. Last night I bolted out of dream that -- forgive me, but families are so easily incestuous. Family incest isn't just about sexual cravings. But also psychological manipulations, where good love is supposed to be about enabling and appeasing all wants and needs for everyone. That might have worked in the 1800s, but with our complex lives now, with relationships that parents can no longer fatham, it is so unfair that we are looked askew at. That we hear words from neighbors about how their offspring are at their beck and call. That we are to feel guilty for putting our own spouses first. Were the shoes on the other foot, they would not feel guilty. Why should we? I don't mean that in spite. Just in the sense that our culture has gone through so much change that we have to adopt to (when ever did your parent spend hours on the phone to reverse data charges)? When did our parents ever have to deal with grandchildren unemployed with grad degrees? Or the disrespect we feel every day when others judge us without a word, but in the long looks. My mother raised me to be a princess, and I am a dirty laborer. She died without believing I loved her. Because I had my own life she couldn't understand. Yet I was there for her, albeit long distance. But by God I am there for my disabled Dad too, long distance, but dealing with a full-time job coordinating. Remember the stories about ranch wives who had to manage a ranch in their husband's absence? That is what it is like. Living by guile. No more gentility and understanding. Just plowing through with attempts to hold our heads up (while bashing ourselves as the ancestors would have wished on us). Carol, your article deserves a much wider audience. Diversity isn't just about accepting the races and tatoos and mental conditions. It is about what used to be called civility and restraint. I would much rather have hitched plow horses to my back (seriously) than deal with what I'm dealing with now. I could have done that without guilt.
Thank you so very much for this very relevant article. I've been dealing with judgment from friends, even my best friend, who just stated, "Do you have a job yet?" I quit my full time job 5 years ago to care for my parents full time. Dad has advanced dementia and mom had a heart attack and had been in a coma (and then I cared for her and dad both). So to say that caregiving for an Alz. patient 24/7 isn't a "job" is so insulting and hurtful. However, I know that this stems from my friend's guilt of not being more hands on with her parent who has Parkinson's. I don't judge her for her choices but try to keep this perspective in mind. I've dealt with so many comments from passersby who make comments like, "Shouldn't your dad be wearing sunglasses?" or just the other week I was lifting my 170 lb dad (who can't bear weight) into my Honda and his head rubbed against the top of the door. A man in the car next to us looked at me and said, "I saw you hit your dad's head." I almost lost it on the man. It's amazing what liberties people take with their judgment. So, thank you for affirming that we are all going through this stuff.
OH MY! Did I need to read this article right at this time! I am just so stressed by being 'only' a long distance 'care giver'....more of a care coordinator...that I read here what others are dealing with; have given up of their own lives; and the lack of support so many of them seem to have....and I do have my moments of guilt because I just cannot take my parents into our home, due to a lot of personal issues....but ending with there has never been a great relationship between them and my husband and HE deserves the most consideration, since he is my best friend, my strength and I married him forever! My parents fought, and drank too much and invaded (and still do) our space when they did visit...life had to be 'all about them'. My husband tolerates visits, but NO WAY could I take them in! And now, Dad is placed in a memory care unit; mom is home alone with her own early diagnosis and my husband is being worked up for possible Parkinson's. Obviously, if his diagnosis is positive...HE becomes my first priority, and mom #2 because she is still home alone and dad #3 because he is in a safe situation now. It's Mom who my 'fight' about this is with though....as she is narcissistic and the world is all about her. She thinks the only answer to her happiness is 'family' should be there for her; family should make her happy; family should be at her beck and call for all needs, complicated or easy, and the more 'family' is around, the more of a victim she becomes and the more needy she becomes. She basks in the attention, with no regard for how she may be interfering with 'family's other life! And, basically the only 'family' is ME! We have two daughters, both married with their own families and living out state. Both are quick to drop all on their plates an fly in to help me in an emergency, but I refuse to be demanding towards them of needing their help too. They have their own responsibilities and their time will come when they have to help their own parents too. It is SO true, that we all need to remember that we haven't walked in the other people's shoes and don't know their history, their relationships and their current situations....so as the article says, we should be supportive even if it's not what we might choose to do ourselves. And I loved the comment, "It's really between me and GOD, what decisions I've made about caring for my parents'. I am going to remember that one and quote it to others as I might need to.
Amen! I love the term "diverse" to describe our various situations. Another word I would use is "unique"....Every situation is unique. I use the term "peanut gallery" to denote the "sidewalk superintendents". I've noticed that as time goes on, people are becoming more supportive of one another. I have always felt that how I care for my elderly parents has been a private issue between me and God.
This article is very helpful, and I am going to bookmark it so that I can read it whenever I start feeling guilty about my caregiving choices. Thank you for this - it is one of the best holiday gifts I could receive!
Thank you for this article. As I read it, I was thinking about my siblings not wanting to help at all with the parents, and also in my mind - me. I still resent it but I need to remind myself that we all had gone thru a dysfunctional childhood. And that majority of them fled the home as soon as they reached adulthood- even if it meant getting pregnant and be forced to marry. And I think of some posts here on this site where others have straightforward been very very very unhelpful with other posters. And I remember how I would recommend my thoughts... It's a very fine line that we need to walk among us caregivers. Very nice reminder...
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Respecting Diverse Approaches to Caregiving
I now receive understanding from my small family but so called "professionals" on the other hand are quick to crucify one who does not meet their expectations. I am NOT here to meet their expectations but to care for my narcissistic sociopath of a mother. We are both still alive 16 years later so I'll give myself a pat on the back. "Well done good and faithful servant." The professionals can kiss my backside & may they reap what they sow.
We all indeed come from such diverse backgrounds and our situations, though similar in some ways, are also extremely different. I lived my entire adult life two and a half hours from my hometown and yet I left my job, lost my benefits and moved back home to care for my Mama, because all her family was here, I knew I could readjust, and as has been my standard MO my entire life, I knew I would "figure it out"....that being said, I have been criticized, ridiculed and told what a fool I was by so many "well meaning people" it has been unbelievable.
While I have been on this site a little while, I only began posting more over the course of the past few months, after Mama's last hospital visit seemed to amplify her dementia and early Alzheimers symptoms. Never have I felt so alone. I think the solitude of this is what is the most painful, so being able to come to this site and emote, vent, etc. and feel that I am not being judged has been helpful...sadly, of recent, it seems even in a caregiving community we experience some of the same judgments that we receive out in the "other world"....that is hard to understand. Of all folks who should understand caregiving, you'd hope that caregivers would be those who could. Perhaps that illuminates the issue even more, that if as caregivers, we also criticize each other and our choices, then folks out there aka the sidewalk superintendents (I love that by the way) are surely going to not understand.
Right after Mama fell, and I moved back home, and had to leave all my friends, I was speaking with one of those friends and she lit into me about how selfish my mother must be. She told me that she'd rather drown herself than to ruin her childs life as my Mother was doing. I quickly informed her that Mama would NEVER had asked this of me, that this was MY decision to move home and that one of the reasons I was doing so was because my Mama had spent her entire life being there for everyone, friends, family, strangers...and if anyone now deserved to have me here she did...good intentions, yes...I quickly learned I was in for a long, sad journey. Nonetheless, we are making it together. Mama is a blessing. Some days are magnificent, some days are hell on earth, most days are somewhere in the middle where I know I am, for now, right where I am meant to be. But it is my journey. It was my choice to do this. And I am glad I did. Some days I have pity parties...some days I think I know a lot. More days than not I find how much I still have to learn. I am appreciative of everyone's advice, however it is no ones right to judge me for whether I take it or simply read it for what it is, advice, and then do the best I can with what I have.
Thank you so much for this article. It certainly spoke to me this morning. And I hope I can be there for others in a similar situation, but I always hope I will convey my opinions and advice in a way that is helpful and never hurtful. It is hard enough for caregivers without adding more guilt, hurt, judgment ....thanks again Carol!!