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On your profile you wrote: "I am caring for my husband Charlie, who is 89 years old, living at home with age-related decline, alzheimer's / dementia, and mobility problems." That must be very difficult for you.
Many people don't ask about the caregiver because they have some bizarre notion that you must be okay because you're not the one in need of care. Many people are not good at self care themselves, and so asking about you is beyond their capacity for empathy.
The next time someone asks about Charlie, just say "He's fine...I'm struggling with the burden" and see their reaction. You will quickly discover your true friends.
If Charlie is 89, how old are you? What are you doing for self care?
Your reply resonates with me. I've had to overcome difficulties over my lifetime, giving folks to feeling or even saying, "you're a strong woman, you can handle it." You are right that some are not good at self care and these days, with he added burden of this virus, quite frankly, they don't want to hear about your own struggles. I've been caring for my dementia afflicted spouse for almost ten years now.
I think people think they're being caring by asking this question. I have now started replying "At this point, he will probably out live me!" This may sound terrible, but some days I think it's not too far fetched! I have had to put all of my own health problems on the back burner!
I say the same that they will outlive me that gets the message across. I have friends who are in the same situation as me and that helps. The hardest is when you explain to your mother and sibling how depressed it’s making you and get the answer ‘well step back then’ but no one else ever steps into the gap. Everyone has amnesia when it comes to acknowledging you’re not coping. But hey, I’m not bitter! 😡
I feel this on every level.. I myself have been in those same shoes where everything is about my dad.. I don’t really have any advice but I want you to know THAT YOU ARE FREAKING AMAZING AND YOUR STRENGTH IS ADMIRABLE
Chiming in here as someone who also had good friends who never asked how I was feeling. But then they had never been a caregiver and had absolutely NO CLUE how draining it can be. But confessions time...before I was a caregiver neither did I. So putting the emphasis of the question on the care receiver is the most natural thing. I now know better and always want to ask a caregiver how they’re doing. If you are the type of person who can speak up for yourself, you can educate them. When they ask, just say, I want you to know that my role is very difficult and I would love for you you to check in on me also. And one other thing I want to add is that just because a parent is in a facility like AL or LTC doesn’t mean the caregiving child is foot loose and fancy free! No, they are still under stress and strain. I encountered that as well.
Harpcat - Thank you for adding the last section regarding a parent in a facility. Even after Mom went into a facility, there is still so much to do and keep track of. For example (one of many), being the primary caregiver and emergency contact, I am ‘on call’ 24/7. I am the one who receives the calls from all the doctors offices during the day and the emergency calls at 3:00 in the morning when there is a problem to be handled while my family members go about their lives without that responsibility and sleep peacefully. And just having the general responsibility for a loved one is a role with so much weight that they don’t understand!
I think it depends on the situation. If you are caring for a narcissist you are invisible as they take all the attention. If you are caring for a “normal” person and are doing it ably, again you are probably invisible as everything seems to be running perfectly to outsiders. If you are visibly struggling, then possibly some won’t ask as they don’t want to be roped in to helping. And finally, there are many people who just don’t see “care” as care, so they just won’t see you as a caregiver and therefore won’t ask you how things are going. It’s a lose lose situation !!
I don’t think people mean to “forget” you. It’s like when a woman is pregnant and everyone always ask how she feels- then when the baby is born- everyone shifts their attention to the child. I try to always make a point of asking the mom how she is doing too after the child is born. I think people don’t realize that maybe on the inside your not so tough and need the TLC too. When my father in law was dying of cancer my mil decided to go to the hospital to seek attention as she was overwhelmed. Grief over a loved one shows it’s self in many ways. It’s not always tears sometimes it’s turned internal and causes anger and resentment for being placed in the position. Knowing that all you’re doing won’t save that person. I would suggest anyone who feels that way find a person to step in for just a few hrs a day or week so they can get a break. Otherwise it will cease to be caregiving and more like a chore. Also a lot of men were not “trained” to ask people their feelings and each generation will present a caregiver with a different set of challenges. Try to be kinder to yourself if you feel nobody else is paying attention. I hope you are ok and able to recover from this incident. And cherish your memories of him.
Nothing like caring for newborn...a violent dementia parent who needs diapers & immobile...no comparison... I would trade caring for a newborn in a second
They don't ask because at times they don't know how to, or they don't know if they should. They find it awkward.
My Father died three years ago with just me by his side when I have five older sisters. No one asked me till now how and what happened. They live as if nothing happened. My father's death happened to me. I don't ask why they don't even ask me because it's like rubbing salt to injury. I live with the pain of losing my Dad and knowing that my Dad was waiting for his other daughters to come to his death bed but they didn't.
So, try to be kind to yourself, don't wonder why no one asks how you are. But just live every moment that you have now. Because when this passess, and they will you won't have a moment of regret. That I can assure you.
I think the reason why most people don't ask the caregiver how they're doing is because they don't want to be asked to help out. Asking the caregiver how it's going opens the door for them to tell the truth that they need help. The person asking knows this and doesn't want to take the chance of being asked to take on a few hours helping out with the elder the caregiver is providing for. Usually in families when there's an elder who needs being taken care of the responsibility of that care will fall on one person whether they volunteer to do it willingly, or if everyone else volunteers that person unwillingly. No one wants to do it so the rest of the family will work together to make sure none of them have to. That's pretty much why it's rare for anyone to ask a caregiver how they're doing.
I agree that is hurts, but we can take control of the situation.
I think we are responsible for not waiting to be asked or doing as NHWM did and educating people.
My late step dad, moved into our family home. He insisted on saying Grace before meals, not a tradition in our home. He did the usual thanking God for the food in front of us etc, but never once thanked the cook, me. After a couple months, I put my foot down and when he started his Grace, I told him he had no right to thank God for the food in front of him, if he did not thank me for preparing it. That he would never eat another meal I prepared, as I took his plate away.
He blustered and blew, but I was firm in my resolve. After that night he always thanked me for preparing the meal as soon as he sat down and he was not allowed to say Grace out loud and we proceeded with our meal.
My Dad asks everyone, every morning how they slept, he seems to think it is an appropriate morning greeting. I do not sleep well, I have never slept well, being asked about my sleep is not a pleasant way to start my day. I have not seen my dad is over a year do to Covid, but I have to remind him every time I see him that being asked how I slept, is not ok.
Dad was well known in my home town, I get sick and tired of people asking if I am related to him, (unusual last name), then going on about how wonderful he is. Then being told how lucky I am that he is still alive etc. Yup, lucky to continue to face his horrific mental, emotional and financial abuse.
When I need support from friends, I tell them. I do not wait for them to ask me how I am doing. Yesterday was a rough day for me, I called a friend in tears, as I knew she would be there for me.
I certainly can understand your feeling hurt and I don't think it's selfish at all. If you weren't a caregiver and you were talking to those same people, they would most likely be asking "you" how you're doing.
Personally, I think there are many reasons (and maybe some of the other posters may have mentioned some of them): There is less and less empathy from people in general much less in response to caregivers. Add to that the pandemic where so many are dealing with their own problems whether it be a job loss, extreme stress from all the mandates, loss of their own loved one etc. Some just ask about the person you are caring for if they are closer to that person, others don't want you to unload all your problems with being a caregiver onto them, some don't know what to say just like people who don't say anything when you experience a death, some may be afraid you may ask (or hint) for some sort of help and unfortunately, some just don't care.
I've experienced it with my mom's siblings and I've become used to it that I don't feel anything anymore. I have resorted to sending update letters or texts and that way I don't have to deal with the insensitivity. Also, when you don't "expect" something to begin with, you don't get disappointed and/or hurt. Then if they do ask, you are nicely surprised.
I've found quite the contrary to be true in my situation. When I have tele-visits with my PCP, the first thing she asks is "how are you doing with the stress of taking care of your MOM?' Are you taking care of yourself, how about your husband, is he also doing self-care and handling the stress in a healthy way? Most of my friends, family and co-workers ask first how I am doing, then they ask about my Mom. I think times have changed, and as more families take on the responsibility of home care for our elderly loved ones, many realize the stress and enormity of this undertaking- and the toll it takes on our ability to have a 'normal' life. I guess I am fortunate in that regard. Although I have siblings who have been estranged from me and my Mom for the past four years, I have those in my husband's family who are also caregivers for their parent, and we support each other-keeping in regular communication, offering help and sometimes just talking through some of the care issues that we face. I am very committed to caring for my Mom, as I know that being with us in our home is the most comfortable place she can be, among her belongings, furniture and all of the things that give her comfort. Yes, it is sometimes stressful and can be draining, but I find great comfort in being here beside her to hold her hand on this last journey of hers from this world into the next.
Your question doesn't sound 'selfish' and you have nothing to apologize for. Just feeling like you DO says it all, actually.
Sick or elderly people are generally the only ones that people think or feel for. Nobody worries about the caregiver; we're taken for granted and/or expected to break our backs and give our ALL with no thanks, no pay, and no recognition of any kind.
My DH spent the last 3 months going thru & recuperating from triple bypass surgery and lung surgery 2 weeks later. We have 7 children between us, and tons of other relatives too numerous to mention. Out of ALL of them, ONE daughter in law called to thank me for all I've done to nurse him back to health, and it's been A LOT, let me tell you. Oh, lots of people called to see how HE was doing, with a few casually asking as an afterthought how I was doing, not waiting for a real answer. My DD whose an RN DID look after me, thank God, because she's one of the few people who understand the stress and heartache a caregiver endures. The rest do not.
Whenever I leave a comment here on the forum, I remind the poster to take of him or herself, that the elder is NOT the only one who matters! When an elder or a family member is sick, EVERYONE suffers. We all need care and attention and pampering, not just the person who's sick or old. It irritates me to no end when only the elder is taken into consideration around here. Then we look at statistics where the caregiver dies BEFORE the elder in 40% of situations. Surprise surprise.
It is perhaps a lack of sensitivity to be able to 'get out of their self and feel for how another is doing, and having the empathy to ask.' I believe just about all behavior reflects how a person feels about their self and how aware they are. The more a person is whole and aware, the more 'room' they have to reach out with empathy and genuine caring / concern.
I question why you mention your question as being 'selfish.' Do you feel you are being selfish? If so, how and why do you feel this way?
Personally, I believe that is a huge step in a person's development to be able to feel for another - to shift from 'me me me' to wanting to and the ability to feel for another, to want to understand how another feels. This takes awareness, to show compassion and empathy.
When I share my pain or some emotion/vulnerability, and experience someone re-focusing the interaction on them "Oh, I know how you feel, I . . . . " and go into their story, I know the depth of their awareness (limited). They do not have the self-awareness to realize "this person would benefit from: acknowledgment, active and reflective listening, compassion." This is not a judgment, it is where they are in their own development - and they may very well feel they are being helpful (in the only way they know how).
It is important to learn to give yourself what others cannot. (As I had to learn to do for myself re my own mother. She didn't know how to be a healthy, supportive mother due to who she was/her own wounding and trauma.) So, I learned how to become my own mother to love myself. I am not making this about me (as I mentioned above others may do....)
It is important to be aware of expectations of others and not set yourself up to be/feel dependent on how another feels or reacts to you. While a long response to a short question, learning to give self-compassion, self-acknowlegment, and then extend these feelings to others is personal growth and promotes equanimity in you.
While annoying, it's pretty normal. Don't take it personally. If you have someone REALLY close to you that does this to you, maybe nicely tell them that you would appreciate it if they would ask about you too?
Everyone always asks me how my mom is. I don't much mind. Yes, a bit annoying but they know she lives with me and that I help her, so I do find it a bit supportive cuz it gives me a chance to vent or feel like the fact that her living here is a big part of my life is being recognized. You can use it as an opportunity to share how it is for you too. "I'm so tired/stressed/etc with X", for example.
I suggest assuming people are being interested in and supportive of BOTH of you when they ask how she is. Be glad they care enough to ask.
I grew to hate being asked, “How is your mother?” There was never a word inquiring about how I was holding up.
I felt completely invisible after a bazillion years of caregiving! It was all about MOM!
I will tell you what I did once. Please don’t criticize or misunderstand. I did more for my mom than anyone ever has.
I needed time away from caregiving to have a much needed break, to laugh, have distractions away from caregiving and not talk about anything concerning the topic of elderly people!
Everyone deserves a break from time to time to relieve the stresses of a very hard job! Caregiving is the toughest job that I have ever done.
Of course, we expect others to inquire about our loved ones that we are caring, and it’s sweet for a time, but we don’t expect them to stop asking about us! And they do.
One night it really got to me. I met my friend for dinner and immediately she asked, “How is your mom?”
She said it in that ‘pitiful’ tone. Know what I mean?
I snapped! Hahaha I was feeling a bit wicked I suppose and looked at her, smiled so sweetly and said, “I am fine, thank you.”
My friend looked very puzzled. She says, “I asked how your mom was.”
So I calmly repeated with the same smile on my face, “I am just fine!”
By this time she was totally baffled!
She says very confused and a bit annoyed, “Didn’t you hear me? I asked how your mom was!”
I said quite emphatically once again, with a warm smile on my face, “I am fine, just great! Thanks for asking!”
By that time, I figured I would explain my actions.
I told her that she USED to ask about me, but ever since my mom lived in my home, that she only asked about MOM!
After I explained she got the point of what I did then and WHY I did it.
They never ask because you're not the sick one. I'm sure they mean well, but have no idea what being a caregiver to someone with dementia entails. It's not like any other disease to care for. The person can't see the toll it's taking on you both physically and mentally. Don't take it personally- they don't know.
I think it's cause the average person who has never been a caregiver has no idea what being a caregiver entails. If they did know they may still not ask cause they just don't want to go there fearing you might actually tell them. Then they may have to admit to themselves that they may one day be in the same position with a loved one of theirs. I think most people figure if they don't "go there" in their own minds maybe it won't ever happen to them. Just my opinion on your question for what it's worth.
Yes. "How is your mom" is asked so often by everyone I know that one time I half kiddingly said right back, "why don't you ask how I am?" That person now always asks first how I am, even though I apologized for that question. I feel kind of bad for saying that, but I do know where you are coming from.
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Many people don't ask about the caregiver because they have some bizarre notion that you must be okay because you're not the one in need of care. Many people are not good at self care themselves, and so asking about you is beyond their capacity for empathy.
The next time someone asks about Charlie, just say "He's fine...I'm struggling with the burden" and see their reaction. You will quickly discover your true friends.
If Charlie is 89, how old are you? What are you doing for self care?
I'm tired and very sad watching my sweet Charlie decline.
I don’t really have any advice but I want you to know THAT YOU ARE FREAKING AMAZING AND YOUR STRENGTH IS ADMIRABLE
And one other thing I want to add is that just because a parent is in a facility like AL or LTC doesn’t mean the caregiving child is foot loose and fancy free! No, they are still under stress and strain. I encountered that as well.
I would trade caring for a newborn in a second
My Father died three years ago with just me by his side when I have five older sisters. No one asked me till now how and what happened. They live as if nothing happened. My father's death happened to me.
I don't ask why they don't even ask me because it's like rubbing salt to injury. I live with the pain of losing my Dad and knowing that my Dad was waiting for his other daughters to come to his death bed but they didn't.
So, try to be kind to yourself, don't wonder why no one asks how you are. But just live every moment that you have now. Because when this passess, and they will you won't have a moment of regret.
That I can assure you.
Asking the caregiver how it's going opens the door for them to tell the truth that they need help. The person asking knows this and doesn't want to take the chance of being asked to take on a few hours helping out with the elder the caregiver is providing for.
Usually in families when there's an elder who needs being taken care of the responsibility of that care will fall on one person whether they volunteer to do it willingly, or if everyone else volunteers that person unwillingly. No one wants to do it so the rest of the family will work together to make sure none of them have to. That's pretty much why it's rare for anyone to ask a caregiver how they're doing.
I think we are responsible for not waiting to be asked or doing as NHWM did and educating people.
My late step dad, moved into our family home. He insisted on saying Grace before meals, not a tradition in our home. He did the usual thanking God for the food in front of us etc, but never once thanked the cook, me. After a couple months, I put my foot down and when he started his Grace, I told him he had no right to thank God for the food in front of him, if he did not thank me for preparing it. That he would never eat another meal I prepared, as I took his plate away.
He blustered and blew, but I was firm in my resolve. After that night he always thanked me for preparing the meal as soon as he sat down and he was not allowed to say Grace out loud and we proceeded with our meal.
My Dad asks everyone, every morning how they slept, he seems to think it is an appropriate morning greeting. I do not sleep well, I have never slept well, being asked about my sleep is not a pleasant way to start my day. I have not seen my dad is over a year do to Covid, but I have to remind him every time I see him that being asked how I slept, is not ok.
Dad was well known in my home town, I get sick and tired of people asking if I am related to him, (unusual last name), then going on about how wonderful he is. Then being told how lucky I am that he is still alive etc. Yup, lucky to continue to face his horrific mental, emotional and financial abuse.
When I need support from friends, I tell them. I do not wait for them to ask me how I am doing. Yesterday was a rough day for me, I called a friend in tears, as I knew she would be there for me.
Also I think you are a real bad a** for how you handled your late step-dad! Thanks for sharing that story, I can just picture it! Well done!
I certainly can understand your feeling hurt and I don't think it's selfish at all. If you weren't a caregiver and you were talking to those same people, they would most likely be asking "you" how you're doing.
Personally, I think there are many reasons (and maybe some of the other posters may have mentioned some of them): There is less and less empathy from people in general much less in response to caregivers. Add to that the pandemic where so many are dealing with their own problems whether it be a job loss, extreme stress from all the mandates, loss of their own loved one etc. Some just ask about the person you are caring for if they are closer to that person, others don't want you to unload all your problems with being a caregiver onto them, some don't know what to say just like people who don't say anything when you experience a death, some may be afraid you may ask (or hint) for some sort of help and unfortunately, some just don't care.
I've experienced it with my mom's siblings and I've become used to it that I don't feel anything anymore. I have resorted to sending update letters or texts and that way I don't have to deal with the insensitivity. Also, when you don't "expect" something to begin with, you don't get disappointed and/or hurt. Then if they do ask, you are nicely surprised.
Sick or elderly people are generally the only ones that people think or feel for. Nobody worries about the caregiver; we're taken for granted and/or expected to break our backs and give our ALL with no thanks, no pay, and no recognition of any kind.
My DH spent the last 3 months going thru & recuperating from triple bypass surgery and lung surgery 2 weeks later. We have 7 children between us, and tons of other relatives too numerous to mention. Out of ALL of them, ONE daughter in law called to thank me for all I've done to nurse him back to health, and it's been A LOT, let me tell you. Oh, lots of people called to see how HE was doing, with a few casually asking as an afterthought how I was doing, not waiting for a real answer. My DD whose an RN DID look after me, thank God, because she's one of the few people who understand the stress and heartache a caregiver endures. The rest do not.
Whenever I leave a comment here on the forum, I remind the poster to take of him or herself, that the elder is NOT the only one who matters! When an elder or a family member is sick, EVERYONE suffers. We all need care and attention and pampering, not just the person who's sick or old. It irritates me to no end when only the elder is taken into consideration around here. Then we look at statistics where the caregiver dies BEFORE the elder in 40% of situations. Surprise surprise.
Don't be a statistic.
I question why you mention your question as being 'selfish.' Do you feel you are being selfish? If so, how and why do you feel this way?
Personally, I believe that is a huge step in a person's development to be able to feel for another - to shift from 'me me me' to wanting to and the ability to feel for another, to want to understand how another feels. This takes awareness, to show compassion and empathy.
When I share my pain or some emotion/vulnerability, and experience someone re-focusing the interaction on them "Oh, I know how you feel, I . . . . " and go into their story, I know the depth of their awareness (limited). They do not have the self-awareness to realize "this person would benefit from: acknowledgment, active and reflective listening, compassion." This is not a judgment, it is where they are in their own development - and they may very well feel they are being helpful (in the only way they know how).
It is important to learn to give yourself what others cannot. (As I had to learn to do for myself re my own mother. She didn't know how to be a healthy, supportive mother due to who she was/her own wounding and trauma.) So, I learned how to become my own mother to love myself. I am not making this about me (as I mentioned above others may do....)
It is important to be aware of expectations of others and not set yourself up to be/feel dependent on how another feels or reacts to you. While a long response to a short question, learning to give self-compassion, self-acknowlegment, and then extend these feelings to others is personal growth and promotes equanimity in you.
We can enlighten a few people, unfortunately not all.
Sometimes people will tell caregivers about others sadly dying before the person that they are caring for.
You’d think that would shed some light on it, and they are still blind to the situation!
Everyone always asks me how my mom is. I don't much mind. Yes, a bit annoying but they know she lives with me and that I help her, so I do find it a bit supportive cuz it gives me a chance to vent or feel like the fact that her living here is a big part of my life is being recognized. You can use it as an opportunity to share how it is for you too. "I'm so tired/stressed/etc with X", for example.
I suggest assuming people are being interested in and supportive of BOTH of you when they ask how she is. Be glad they care enough to ask.
I felt completely invisible after a bazillion years of caregiving! It was all about MOM!
I will tell you what I did once. Please don’t criticize or misunderstand. I did more for my mom than anyone ever has.
I needed time away from caregiving to have a much needed break, to laugh, have distractions away from caregiving and not talk about anything concerning the topic of elderly people!
Everyone deserves a break from time to time to relieve the stresses of a very hard job! Caregiving is the toughest job that I have ever done.
Of course, we expect others to inquire about our loved ones that we are caring, and it’s sweet for a time, but we don’t expect them to stop asking about us! And they do.
One night it really got to me. I met my friend for dinner and immediately she asked, “How is your mom?”
She said it in that ‘pitiful’ tone. Know what I mean?
I snapped! Hahaha I was feeling a bit wicked I suppose and looked at her, smiled so sweetly and said, “I am fine, thank you.”
My friend looked very puzzled. She says, “I asked how your mom was.”
So I calmly repeated with the same smile on my face, “I am just fine!”
By this time she was totally baffled!
She says very confused and a bit annoyed, “Didn’t you hear me? I asked how your mom was!”
I said quite emphatically once again, with a warm smile on my face, “I am fine, just great! Thanks for asking!”
By that time, I figured I would explain my actions.
I told her that she USED to ask about me, but ever since my mom lived in my home, that she only asked about MOM!
After I explained she got the point of what I did then and WHY I did it.