When will we we learn to be more self compassionate? When will we be kinder to ourselves? When will we accept that we are simply human and not try to live up to some impossible image of a caregiver who is never hurt, angry, selfish? Hugs to you all.
This is a great posting. There is nothing like getting older to know what life is all about. Many of us felt like we knew everything in our youth. I have a totally different perspective as I age. I will turn 65 in October. Wisdom does come with lifetime experiences.
It’s interesting now that so many people are living longer and seniors are taking care of other seniors, either parents, godparents, aunts or uncles or siblings, etc.
My husband’s great grandmother lived to be just shy of 102! Fortunately, she really didn’t have any major health issues.
She lived with her daughter and would get mad because her daughter did not allow her to lift the heavy cast iron pots to cook a family meal.
She weighed 92 lbs and her daughter was afraid that she would hurt herself. It was hard for her not to continue doing as she always did.
The woman raised 12 children. They kept busy all of their lives. I don’t think she knew how to slow down. She had a very positive outlook on life.
She was dancing to the band that we hired for her 100th birthday party! She didn’t use a cane or walker. She knew every guest that attended her party.
She had all of her faculties. If only we could all age as she did. She simply died of old age.
It’s still hard being a caregiver in all cases but when people have to care for those who do have major health issues then it is a whole other ball game. The stress and burden can become unbearable.
While it was less common way back in the day for many to survive that long, esp without any medical issues, it did happen! Good on her, and yes, it would be great if we could all age as she did! My point in acknowledging this comment is to dispute what others says about this dementia tsunami being a result of living longer! While age IS a risk factor, it is NOT the deciding factor. There are MANY who are in their 90s and beyond who are doing fine, esp for their age. There are others who don't even make it to retirement age (there were at least 2 people in mom's MC that were younger than me!)
Hope for the best, prepare for the worst - I am still planning to get all that paperwork done, but like house repairs here, everything was delayed due to lack of finances. I need to get going on it, but I have already told my kids that I do NOT expect them to take me in, should I need help or go the dementia route! Find a nice place for me, hopefully with a remaining cat or 2 (no more kittens, they could outlive me!) and visit if you want to, but it isn't required!
I joined the forum today so I have no experience with what happened on here before.
But I would like to share my "real world" experience off the site so far....
Men and Women, BOTH EQUALLY, assume I am a loser because I have decided to be a caregiver for my parents. I am supposed to be out in the wild, bustin' up the world makin' cash and bendin' upside drawin' the honey pot arm candy crown circuit beauty queen.
A guy who "sacrifices" anything to actually care about something other than themselves is tagged a total loser by women and men alike.
My experience does not change yours. But I respectfully ask that we can talk about our experiences. I am not trying to negate any of your feelings. But I think guys who are care givers are people too. I'm just asking that you not forget my contribution as a guy caregiver.
I hear you loud and clear. You said that so very well. I hope everyone reads your posts.
We can sum it up by saying caregivers have the toughest job on earth, right? Who on earth does it perfectly all the time? Absolutely no one.
I never even knew the term ‘FOG’ (Fear, obligation and guilt) before I joined this forum and believe me that fit me to a T! I had a lot of work to do on myself. With help from this forum and a therapist I made it.
To hear unfair criticism on top of an already stressful situation is absolutely horrible. No one deserves that.
Sometimes hurting people hurt others and all we can do is wish them well and hope that they see the light one day.
All of us has at some point in our lives said things that we didn’t really mean. Eh, we all have bad days every now and then. It’s easy to forgive someone having a bad day.
Other people are insecure and build themselves up by knocking people down and sadly there are people who are plain evil. It’s a waste of time to even try to rationalize with them. Then there are the run of the mill trolls.
Many, many people are compassionate and respectful. Fortunately, most people would rather be helpful than unkind.
It could be because most of us are in our 50s to 70s and were on the whole not brought up to have (or admit to having) a good opinion of ourselves - my parents acted as though what they called 'showing off' was the most awful behaviour a child could show - and it seems to have been drummed into girls more than boys. Also, we were supposed to be more domesticated than they were - a laugh as my brother is happier in a kitchen than I ever was!
I'm not saying men don't care; my own sons are very loving and caring towards me. I just think it's a generational thing mostly. I think I succeeded in bringing my daughter up to feel of equal value to her brothers without having to prove it.
Excellent points! I raised my daughters exactly as you did.
It most certainly is a generational issue. I was the only daughter in my family. My mom’s attitude was exactly as you are describing.
It was very common for past generations to be raised in this manner and unfortunately it lived on in future generations.
You and I were of the generation that broke the disturbing cycle.
It’s amazing to me how sexist attitudes are still around.
Thanks for pointing out that some women aren’t thrilled about being in the kitchen and many men love cooking! It’s an individual thing.
I enjoy cooking but I certainly don’t have any guilt about ordering a pizza every now and then.
I am extremely grateful to my mother in law for raising her sons the opposite of how my mom raised my brothers! My husband is a great cook, a wonderful father, changed diapers, helps around the house and so forth.
I feel that in healthy marriages husbands and wives care for each other and if children are involved they both are involved parents.
Fact is, men “fail” sooner than women, so women are more often the “capable” partner and thus left with the caregiving.
I think the hardest lesson for ANY caregiver to learn is that you don’t always have options that will lead to the happy ending, and there are times when the very best you can do isn’t really that great. Once you’ve accepted that, it’s easier to develop a sense of the realities of your situation. And THAT can hopefully reveal that “guilt” is wasted energy.
Old age is NOT for sissies, and caregiving sure isn’t for sissies either.
Isn't that the truth. So many "Questions" posted today seem to me belonging under "discussion" because this is such an interesting discussion to have. We see so often the same words over and over again, often so wrongly used. We speak over and over about guilt. Guilt as a work means we have done something awful with malice aforethought, and now have come with self-knowledge seeking redemption. It is so misused on this forum. We have NOT done knowing evil. We have come straight up against our own human limitations, and not one person posting or answering on forum has not experienced this. We are in GRIEF, not guilt. We grieve the suffering and loss of the elders we love (or care for despite having little love), knowing the indignity they suffers, losses of body, of mind, of self control. We grieve our inability to make it better. I think those who do the best are those that have an ironical humor that seeps through about the ways in which we "lose it". I recall my friend Arnie telling me of having to try to collect a clean catch urine from her Mom, who was totally unable to cooperate. There was Mom on the toilet. There was Arnie squatting on the floor in front of her with the cup in hand, realizing it was actually her birthday. Realizing it in the middle of the day. She said that she was so gone that she started muttering "Happy Birthday to youuuuu, Happy Birthday tooo youuuu....." At which point her Mom said "Oh, Dear! Is it my BIRTHDAY! I completely forgot". You mention the hurt, anger, our lack of self-compassion. But there is also the humor, the courage. The outright heroism I see here gives me hope to go on. Not in caring for someone. I spent my life as a nurse and knew early on I could never do 24/7 hands on care. But the courage just to go on with life, its sadness, and its joy.
Interesting observation. I think women are, so to speak, "born" nurturers, so when they think their care isn't enough, they self criticize, feel guilty. Men, on the other hand, feel more of a sense of relief when, let's say they have to place their spouse in a facility. Nurturing is not one of their strong points. Some of us (yup, I said us), do feel some guilt but my sense of relief was much stronger than any guilt. The emotion I feel most is lonliness.
I facilitate 3 different dementia support groups. Knowing that women develop AD more then men, I expected to see more men caregivers in my meetings than women. Nope! 90% of the attendees are women. When men do show up, they come with their daughters. I also speak to groups about my and my wife's experience with AD and, there too, it's women who show up.
There was a posting several months ago by a gentleman whose advice to the rest of us was essentially to suck it up, quit whinning and do what you're suppose to do. I was PO'd. I'm waiting for his follow up posting saying he's at wits end, what can he do.
Great discusion. As a past caregiver, I'm still learning a lot from this forum. Thx.
Your "suck it up" dude may explain why you don't have more men in the groups. It is another stereotype, but for them it isn't "manly" to give in to emotions or difficulties. Not everyone falls into categories, but those who do REALLY fit! Most likely it is still a fact that there are more women care-givers than men, but that doesn't negate anything these men do and give up!
I know two men my age pretty well that live with their moms and are their primary caretakers. (I belong to a 12-step group, and that's where I know them from.) I've never discussed the emotional aspects of caregiving with either, although they know I'm PCr as well, and there seems to be an unspoken support and understanding among us, and they've each said I could call them any time, with any concern or difficulty I may be having as a PCr. [I've never done it, but that's MY hangup.] I suspect they discuss their emotions with each other. Also, they both openly and regularly share about their roles and aren't the least bit umcomfortable about it, and always speak with affection and love, but rarely share any frustrataion or guilt. I don't know if it's a gender tendency or not!
I did eventually feel guilt--as caretaking became more demanding and my life continued to shrink, I began to experience major depression (I already have chronic lifelong depression). I did feel uncomfortable with my thinking "how long is this going to last" (my mom's now 92+) and desiring relief and release. But I've come to believe that god [whatever, whoever that is] approves and supports me. As the old adage says, "guilt is a useless emotion". There've been so many great posts already here!
A lot of factors go into our self-image - upbringing, experiences over the years, even genetics can play a part!
Living up to some ideal image seems to have begun back in the day when we were dubbed "SuperMom". Those of us who had to work outside the home, care for the home, care for the kids, etc fell into this "ideal". However parents can REALLY influence our behavior, thoughts AND self-image. It can take MANY years to get past the baggage, sometimes it is so ingrained we can't!
One time during a nasty divorce, I was accused by the ex of having an affair. It hurt a lot at the time, but later, reflecting on it, I realized I must be super-human!
* full time off-shift job. * ALL house duties mine - I even took over mowing! * ALL child care mine * after coming home from work, prepping the kids for the day, and dropping them off at day care, I stopped by his place of work to spend 2-4 hours BOOKKEEPING for him!
All that and I could find the time to get a piece on the side? Wow! I didn't and wouldn't even consider it, but gee, I must be something if I could! What a clueless fool he was.
I knew my limits and thankfully mom and dad had enough saved that I didn't have to take on her care (other than trying to support her while she was still living alone and starting down the dementia path and advocating/managing her care.) A few times long before that I had considered it, but realized it would be a very bad idea.
Angry? Sure, but only at my brothers, who were also clueless, but sometimes cruel in their responses or inability to offer help, minimal as it was! I did have to get beyond that myself. I realized being angry with them only hurt me, not them. Before coming to that epiphany, I started an email to each one. I would put it aside (draft folder) and periodically updated it. At some point, it was like a catharsis - I got out what I needed to say, but didn't ever send them. The result would have not been what I would like and would likely just stir up the bee's nest, so they sit to this day in my draft folder.
OB is out of my life with minor exceptions. There's been no communication for over 2 years (he's also not local, thankfully!), but I felt it only right to tell him about mom's mini-stroke, to keep him informed. 15 hours to get "Thanks for update" - yup, really cares about his mother! Once she does pass, there will have to be a little communication, regarding mom's last wishes, etc, but that's it. YB was not nearly as abusive to me, but still has been nasty and uncooperative. Except that I needed him to take mom to Mac Deg treatments, I would have been done with him too. Now that she's had this stroke, I cancelled the treatments, so he's "off the hook" for now. He is also POA and all 3 of us are trustees, but neither of them has done a thing! I expect to do all the finalization work when the time comes, and will feel NO guilt in taking exec fee!
So, once she has moved on, I will become an only child and have MY FREEDOM! I only hope I can live so long AND be able to salvage some semblance of a life. I feel like we are in a race at the moment - who goes first, mom (97), me or my 21.5+ yo kitty? Hoping it isn't me. Mom needs me to keep things going smoothly, kitty needs me too. She wouldn't last or be adoptable.
Know what, disgustedtoo? Somehow I feel that when you finally do reach freedom that you will get an enormous surge of energy!
You’ll salvage all of the important things in life. I just know it. Make time for some fun too.
I don’t envision you as a person who would waste their time. I love your creative suggestions on this forum. I appreciate your compassion and I adore your sense of humor.
It’s interesting now that so many people are living longer and seniors are taking care of other seniors, either parents, godparents, aunts or uncles or siblings, etc.
My husband’s great grandmother lived to be just shy of 102! Fortunately, she really didn’t have any major health issues.
She lived with her daughter and would get mad because her daughter did not allow her to lift the heavy cast iron pots to cook a family meal.
She weighed 92 lbs and her daughter was afraid that she would hurt herself. It was hard for her not to continue doing as she always did.
The woman raised 12 children. They kept busy all of their lives. I don’t think she knew how to slow down. She had a very positive outlook on life.
She was dancing to the band that we hired for her 100th birthday party! She didn’t use a cane or walker. She knew every guest that attended her party.
She had all of her faculties. If only we could all age as she did. She simply died of old age.
It’s still hard being a caregiver in all cases but when people have to care for those who do have major health issues then it is a whole other ball game. The stress and burden can become unbearable.
Hope for the best, prepare for the worst - I am still planning to get all that paperwork done, but like house repairs here, everything was delayed due to lack of finances. I need to get going on it, but I have already told my kids that I do NOT expect them to take me in, should I need help or go the dementia route! Find a nice place for me, hopefully with a remaining cat or 2 (no more kittens, they could outlive me!) and visit if you want to, but it isn't required!
I joined the forum today so I have no experience with what happened on here before.
But I would like to share my "real world" experience off the site so far....
Men and Women, BOTH EQUALLY, assume I am a loser because I have decided to be a caregiver for my parents. I am supposed to be out in the wild, bustin' up the world makin' cash and bendin' upside drawin' the honey pot arm candy crown circuit beauty queen.
A guy who "sacrifices" anything to actually care about something other than themselves is tagged a total loser by women and men alike.
My experience does not change yours. But I respectfully ask that we can talk about our experiences. I am not trying to negate any of your feelings. But I think guys who are care givers are people too. I'm just asking that you not forget my contribution as a guy caregiver.
What works for one person doesn’t necessarily work for another but we should definitely be understanding, loving and kind to each other.
We can sum it up by saying caregivers have the toughest job on earth, right? Who on earth does it perfectly all the time? Absolutely no one.
I never even knew the term ‘FOG’ (Fear, obligation and guilt) before I joined this forum and believe me that fit me to a T! I had a lot of work to do on myself. With help from this forum and a therapist I made it.
To hear unfair criticism on top of an already stressful situation is absolutely horrible. No one deserves that.
Sometimes hurting people hurt others and all we can do is wish them well and hope that they see the light one day.
All of us has at some point in our lives said things that we didn’t really mean. Eh, we all have bad days every now and then. It’s easy to forgive someone having a bad day.
Other people are insecure and build themselves up by knocking people down and sadly there are people who are plain evil. It’s a waste of time to even try to rationalize with them. Then there are the run of the mill trolls.
Many, many people are compassionate and respectful. Fortunately, most people would rather be helpful than unkind.
I'm not saying men don't care; my own sons are very loving and caring towards me. I just think it's a generational thing mostly. I think I succeeded in bringing my daughter up to feel of equal value to her brothers without having to prove it.
Excellent points! I raised my daughters exactly as you did.
It most certainly is a generational issue. I was the only daughter in my family. My mom’s attitude was exactly as you are describing.
It was very common for past generations to be raised in this manner and unfortunately it lived on in future generations.
You and I were of the generation that broke the disturbing cycle.
It’s amazing to me how sexist attitudes are still around.
Thanks for pointing out that some women aren’t thrilled about being in the kitchen and many men love cooking! It’s an individual thing.
I enjoy cooking but I certainly don’t have any guilt about ordering a pizza every now and then.
I am extremely grateful to my mother in law for raising her sons the opposite of how my mom raised my brothers! My husband is a great cook, a wonderful father, changed diapers, helps around the house and so forth.
I feel that in healthy marriages husbands and wives care for each other and if children are involved they both are involved parents.
I think the hardest lesson for ANY caregiver to learn is that you don’t always have options that will lead to the happy ending, and there are times when the very best you can do isn’t really that great. Once you’ve accepted that, it’s easier to develop a sense of the realities of your situation. And THAT can hopefully reveal that “guilt” is wasted energy.
Old age is NOT for sissies, and caregiving sure isn’t for sissies either.
Blessings! We ALL KNOW WHO WE ARE!
I think those who do the best are those that have an ironical humor that seeps through about the ways in which we "lose it". I recall my friend Arnie telling me of having to try to collect a clean catch urine from her Mom, who was totally unable to cooperate. There was Mom on the toilet. There was Arnie squatting on the floor in front of her with the cup in hand, realizing it was actually her birthday. Realizing it in the middle of the day. She said that she was so gone that she started muttering "Happy Birthday to youuuuu, Happy Birthday tooo youuuu....." At which point her Mom said "Oh, Dear! Is it my BIRTHDAY! I completely forgot".
You mention the hurt, anger, our lack of self-compassion. But there is also the humor, the courage. The outright heroism I see here gives me hope to go on. Not in caring for someone. I spent my life as a nurse and knew early on I could never do 24/7 hands on care. But the courage just to go on with life, its sadness, and its joy.
I facilitate 3 different dementia support groups. Knowing that women develop AD more then men, I expected to see more men caregivers in my meetings than women. Nope! 90% of the attendees are women. When men do show up, they come with their daughters. I also speak to groups about my and my wife's experience with AD and, there too, it's women who show up.
There was a posting several months ago by a gentleman whose advice to the rest of us was essentially to suck it up, quit whinning and do what you're suppose to do. I was PO'd. I'm waiting for his follow up posting saying he's at wits end, what can he do.
Great discusion. As a past caregiver, I'm still learning a lot from this forum. Thx.
I did eventually feel guilt--as caretaking became more demanding and my life continued to shrink, I began to experience major depression (I already have chronic lifelong depression). I did feel uncomfortable with my thinking "how long is this going to last" (my mom's now 92+) and desiring relief and release. But I've come to believe that god [whatever, whoever that is] approves and supports me. As the old adage says, "guilt is a useless emotion". There've been so many great posts already here!
Living up to some ideal image seems to have begun back in the day when we were dubbed "SuperMom". Those of us who had to work outside the home, care for the home, care for the kids, etc fell into this "ideal". However parents can REALLY influence our behavior, thoughts AND self-image. It can take MANY years to get past the baggage, sometimes it is so ingrained we can't!
One time during a nasty divorce, I was accused by the ex of having an affair. It hurt a lot at the time, but later, reflecting on it, I realized I must be super-human!
* full time off-shift job.
* ALL house duties mine - I even took over mowing!
* ALL child care mine
* after coming home from work, prepping the kids for the day, and dropping them off at day care, I stopped by his place of work to spend 2-4 hours BOOKKEEPING for him!
All that and I could find the time to get a piece on the side? Wow! I didn't and wouldn't even consider it, but gee, I must be something if I could! What a clueless fool he was.
I knew my limits and thankfully mom and dad had enough saved that I didn't have to take on her care (other than trying to support her while she was still living alone and starting down the dementia path and advocating/managing her care.) A few times long before that I had considered it, but realized it would be a very bad idea.
Angry? Sure, but only at my brothers, who were also clueless, but sometimes cruel in their responses or inability to offer help, minimal as it was! I did have to get beyond that myself. I realized being angry with them only hurt me, not them. Before coming to that epiphany, I started an email to each one. I would put it aside (draft folder) and periodically updated it. At some point, it was like a catharsis - I got out what I needed to say, but didn't ever send them. The result would have not been what I would like and would likely just stir up the bee's nest, so they sit to this day in my draft folder.
OB is out of my life with minor exceptions. There's been no communication for over 2 years (he's also not local, thankfully!), but I felt it only right to tell him about mom's mini-stroke, to keep him informed. 15 hours to get "Thanks for update" - yup, really cares about his mother! Once she does pass, there will have to be a little communication, regarding mom's last wishes, etc, but that's it. YB was not nearly as abusive to me, but still has been nasty and uncooperative. Except that I needed him to take mom to Mac Deg treatments, I would have been done with him too. Now that she's had this stroke, I cancelled the treatments, so he's "off the hook" for now. He is also POA and all 3 of us are trustees, but neither of them has done a thing! I expect to do all the finalization work when the time comes, and will feel NO guilt in taking exec fee!
So, once she has moved on, I will become an only child and have MY FREEDOM! I only hope I can live so long AND be able to salvage some semblance of a life. I feel like we are in a race at the moment - who goes first, mom (97), me or my 21.5+ yo kitty? Hoping it isn't me. Mom needs me to keep things going smoothly, kitty needs me too. She wouldn't last or be adoptable.
You’ll salvage all of the important things in life. I just know it. Make time for some fun too.
I don’t envision you as a person who would waste their time. I love your creative suggestions on this forum. I appreciate your compassion and I adore your sense of humor.