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I have friends who are lovely, but have relatively carefree lives. They are not dealing with an aging parent. It has been a much harder path for me, lately, and I’m very tired. I talk a bit about it with them, but then go on to more pleasant subjects.


My sense is that they don’t really understand what’s involved. Does anyone else have that experience?

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Its like anything else. Empathy is learned thru scar tissue. Until your friends have walked your path, they have no idea what caregiving is all about.....not a clue. Which is why support groups are so helpful. We all "get it".
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Katybr Apr 5, 2024
Amen!
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Those that didn’t do it don’t understand.
It’s like trying to get a guy to understand what giving birth is like .

Ignorance is bliss. Sometimes I envy our friends with care free lives that escaped it .
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Danielle123 Apr 5, 2024
I envy them, too, at times, and stay off social media for that reason (people tend to post the highlight reels of seemingly fun lives—ie. vacations).
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I like what you say about walking the path and scar tissue.
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lealonnie1 Apr 6, 2024
Danielle, even I myself didn't understand what caregiving was all about until I was involved in it!
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OMG this is so true. For me it's my mom's brothers who don't understand that she has dementia. Very irritating but I do understand their ignorance on some level.
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waytomisery Apr 5, 2024
I am in touch with very few family members because of many in denial while I was caring for my mother with dementia.
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No one understands unless/until they have been a caregiver. I know I had no inkling of what an all-consuming, soul-sucking, life-altering type of work it is. It drains the joy from your present and makes you dread aging.
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waytomisery Apr 6, 2024
All of this !!
I’m paranoid about aging , being difficult with dementia . I don’t want to do this to my kids . I want to be that rare pleasant cooperative little old senile lady .
Or have the sense to end it .
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I agree with all others who posted previously. No one truly knows what is like unless they have walked in your shoes.

People can be obnoxious at times. Especially those who are Pollyanna types. They are constantly trying to convince others that things ‘aren’t so bad’ or that there is a ‘silver lining.’ They believe that ‘everything happens for a reason.’

Life stinks at times. You know it. I know it. So, just let them live in their delusional fantasy world if they want to.

If they run into problems themselves in the future, they’ll realize what you went through.

I have had others tell me after they experienced similar issues tell me that they were sorry for not understanding what it was like for me as a caregiver. I appreciated that they finally acknowledged how hard it is to be a caregiver.

My caregiver days are over now. My parents are deceased. I’m very sorry that you are struggling. I wish you peace.
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Danielle123 Apr 6, 2024
I’m glad that your caregiving days are over and that there were people in your life who finally acknowledged how hard it was on you.

Thank you also for wishing me peace. I wish that for myself, and everyone else on this forum, too.
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Hi Danielle,
I didn't read what the others wrote, so I might be repeating. It's probably a lot like if you have a baby and your friends didn't. They just don't get it. I can honestly say I wouldnt of gotten it either. I will say, from now on I will be a lot more supportive of anyone I know that is caregivers.
I have issues with friends that do care giving too. One friend thinks she knows everything because she took care of her dad for 3 months, I'm over the 3 yrs mark. She judges me because she thinks I don't do enough. Well she tried to judge me, haven't talked to her in quite some time, lol for good reasons.
Then I have another friend who thinks I do to much for my mom. Her mom is in AL, I'm realizing it's because she is feeling her own guilt, that we all feel when are parents are in a facility. And maybe I'm a bit jealous at times of her freedom.
I have figured out I have my family, I have some friends, but some things are just put to the side for a while. There not going to get it.
One other friend I pretty much dumped because she was just to darn needy, and I had enough neediness in my life. Then she came to me one day after taking her mom shopping a few times, and said "I get it, now" . We are developing a new kind of friendship, less demanding on me
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MeDolly Apr 6, 2024
Perpetuating guilt because one has to place a loved one in a facility is not a healthy mindset.

I have two in homes, both are well-cared for and I have no guilt, nor should anyone else. I am not clinically trained nor do I have the need to spend my life in a servitude position.
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Bottom line...NO ONE can truly understand unless they too have walked in your shoes. PERIOD. End of sentence.
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Rogerwyatt7890 Apr 6, 2024
BINGO
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I actually think it’s an easy out to say people haven’t experienced it therefore they don’t know how to have empathy about it. I think people who care will ask how you are doing and listen to the answer, and if you are having a tough time they feel for you, whether or not they have ever had that experience themselves. I know I’m hard on people sometimes and in the past year I have let some people go, but also I truly value the friends who make a point of letting me know they care. I think that means then I need to take responsibility and be there for other people as well. I try very hard in general to let other people’s bad behavior inform my own choices, to know I don’t want to act like they do.
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Danielle123 Apr 6, 2024
BayPoodle, I think that what you write about the nature of empathetic friends should be, is true. I have one friend who is also in a caregiving role for her 95-year old mother. I have shared some of my struggles with her. In her own way, she tries to be supportive by telling me that I’m a wonderful daughter, the implication being that praise is enough. She does not yet know that (for my own mental health) I need to relinquish the role of primary caregiver. I hope that she will not judge me as I truly value her friendship. I fear that she might.
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No, of course they cannot imagine what it is like to be a caregiver.
As an RN I knew early on I could never attempt to take on 24/7 care. I knew I would not be able to do it, because I knew that 12 hour shifts 3 days a week were killers; therefore survival doing it 24/7 was out of the question.

We can try to imagine what it is to have a new baby. Until we have one, however, we cannot ever have full empathy with what it entails.
Same with cancer. We can imagine; but we haven't done it until we do it.

It only makes sense.
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Most People have no idea and could careless . I had a social worker at One Point and she left and I got another One where I can freely talk But I Know she has no idea . A Psychiatrist and another Therapist helped me with My Mother . My Fathers doctor ignored me and told me " I could Not leave my Father " Unless someone has walked in your shoes they are clueless . No they dont Have any idea Unless they have taken on that role .
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All answers here to your question are good. I will turn it around just a bit too. I realized once at a little tea party with my friends that I no longer had anything to talk about besides my mom. My friends were talking about their travels and all they were doing and were so excited about their lives. I actually apologized at one point for having only news about my mom. The table went quiet and then they all wanted to know more about her. Of course they didn't understand, as none of them had done caregiving, but I did not fit into their conversations either. I didn't feel envious or anything like that, but just felt for the first time on the outside of this group, not because they didn't understand, but because I didn't fit any longer. The many amazing people helping me care for my mom and some of my neighbors who had done caregiving became the ones I could talk to. I'm in the process now of getting back to some of my old life, but realizing it will never be the same because I am not the same. It's great when friends can accept the changes in one another. However it seems we have friends for what they bring to our lives and when they no longer bring that, the friendships either change and grow accordingly or they die out.
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Anxietynacy Apr 6, 2024
Love it!
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No one understands unless they have been through it.

TBF. How would they know? It’s one thing to see it in regard to another person, but it’s an entirely different thing once they experience it for themselves.
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I don't think anybody understands totally what is involved unless they have been there.
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My friends are accustomed to me being lighthearted and jokey by nature. I'll tell them something like -
"I was having an blissfully normal conversation with mom until she told me to move aside because she couldn't read the sign the girl behind me was holding up."

So my friends laugh, because my face isn't showing the corresponding emotion, which is wistfulness. I don't admonish them for finding humor, it's understandable.

Your friends will never understand that cold chill you get when dementia comes out during a moment of blessed calm.

They won't "get it" that you feel hopeless and helpless much of the time and that you can feel the situation aging you.

They won't have had the experience that you've had - of total surrealism, when you're just standing there like, "Is this even happening? Is this REAL?"

They won't know how you feel, unless they experience it with their parent or partner.

And we all pray earnestly that our friends never know, because we wouldn't wish this on another living soul.
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Danielle123 Apr 6, 2024
BlueHeron, I know all about hiding one’s emotions.
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Judgement. The family member (who occasionally visits) imposes unsolicited, helpful advice on what you should be doing. Yeah, that’s just what I needed today
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I’m actually watching this come full circle right now with several friends. I was my parents “later on, we’re not having any more babies baby” so my parents were always a good bit older than most of my friend’s parents. When I was going through tough aging issues with my parents at two separate times, with differing issues, most friends would listen politely to a limited amount about it, but not really much more. We have an adult son with a brain injury and complex medical condition from very young, so we’d long known the limitations of others in hearing about difficult topics. The fact is you can’t focus on it for long or you won’t have close friends, and it does no good to be angry or bitter about it, it’s best to accept humans as people with the frailties we all have. But now, several friends are going through hard issues, a mom who’s been exploited by a scammer, the falls, the endless doctor’s appointments, the chasing a diagnosis, the repeated rehabs, the refusals to cooperate, etc. I’ve been able to be a listening ear, to offer encouragement and advice when appropriate. And I do remember that when you’re in it, it’s really good on both sides to move to more pleasant topics, for everyone needs a break and to focus on things outside of caregiving.
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I feel like my friends understand caregiving more than my siblings because they have never actually helped in the past 14 years.
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