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Hi everyone, I'm sure there's probably a topic somewhere around here on this subject, but I couldn't find one, so I'm starting a new question. I'm just wondering how many caregivers here have friends who, at the beginning of your loved one's illness, said things like, "Oh, let us know if you need anything!", or "We're here for you!" etc., and then all but disappeared? I'm disgusted by this. Even my FIL's church, where he has attend for FORTY YEARS (that's 40, yes), has pretty much ignored him, even though he is VERY well known and loved in the church. And, it hasn't even been that long since his diagnosis, just a couple of months! I'm sad for him. His pastor came to our house to visit Dad, once, for about 30 minutes, which I actually thought was very nice. One other church member came to visit for an hour or so; she was a friend of mine when I went to the same church, and I very much appreciated that. Beyond that, nothing, nada! I'm not on Facebook much, but I logged in the other day, and saw that someone I know had posted a photo of my father-in-law, talking about how much she loved him and how she was soooo sad that he has cancer. She got a TON of responses!!! But did anyone send me or my husband a message, or send a card to Dad, or call, or anything? Nope. So, a random friend on FB gets sympathy, but no one bothers to call the actual family?!?! That's just sick and weird, IMHO. (Oh, and no, that person who posted the photo on FB hasn't bothered to even come visit Dad. Nice.) Oddly, the people who have been most supportive are Dad's neighbors. They were so good about picking up his mail, (until we realized he is here permanently and had it forwarded), keeping an eye on his house, and calling us to check on Dad. I'm so thankful for these people, they're so sweet! It doesn't quite take the sting out of my own friends ignoring me, but it does help, and I'm trying to be thankful for anyone who cares! So, does anyone else have similar stories?

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I stopped talking to my friends because they don't understand and give me unsolicited, insensitive advice - I've disappeared from them!

I don't go on Facebook anymore because everyone likes to brag about the good in their life - and this isn't real life. To them it's competing about who has the best life. I'm too busy competing with Mom's demons just to change her diaper or give her bath.
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I think often when our friends and relatives make those comments on Facebook or at family gatherings they really do care... for the half hour or so that thoughts of you and yours are at top of mind. The problem is that they then resume their lives and never think of you again until the next reminder; a holiday, a birthday, a worrying event. The question really isn't "how to get them to care", but "how to get them to include you in their life".
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I think our friends become each other on this site. We 'll never meet in person, but wow most of us understand each other and have walked in the same shoes. We can be really honest here and most of the time , get really good advice. I think for most people not in our situations, they probably fear that it may happen to them to someday ( to become a caregiver) and it's easier to not think about that. I think we too have to not talk about how challenging our lives have become , every single time we communicate with our friends, because who wants to be around complainers all the time. It's not easy , and most of us count on ourselves and if lucky a spouse or sibling. But for me, I've developed a rather thick shell. I don't expect or receive much emotional support from any one other than my husband and daughter, and other people on this site.
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"Facebook is the perfect platform for people (who do nothing) to make themselves look wonderful to the world." Absolutely correct. People can be so fake. And yes, most of my FIL's family are MIA but put on a good show of caring and concern at family gatherings. It makes me want to puke!
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I wonder how many friends / family are thinking about you but really don't know what to do. My wonderful step-mom took care of my dad full time for five years before he entered the nursing home and she really became isolated. She got very lonely and yes, resentful, of her friends and family.

I went to their town monthly to give her respite and countless people would ask "how is your dad? how is your stepmom" and i would encourage them to call. They would and then everyone would lose contact again.

I think people want to help but don't know what to do. I started suggesting to people at their church or their circle of friends that my step mom felt isolated and that they could stop in for coffee, offer some specific help - like dropping by a prescription, or sitting with dad so she could get out for a few hours. A number of people started doing specific small things - my next challenge was getting my step mom to accept their help and also identify small areas where they could help. She started feeling less isolated.

When my co-worker's wife was dying of cancer (young, with young children) - their family set up a website with specific needs - mow lawn, drop off meals etc that was updated with their daily needs. Those of us who wanted to help were offered this site. We really liked it because it updated the wife's condition but also there were specific ways we could help and we did.

I hope you can find ways to reconnect. It gets so hard.
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Yes, all but one friend has abandoned DW. I now consider to be the only friend in the state. When DW got home from rehab the friend did call to inquire if she could visit. Of course I said yes and the friend actually brought some food to share. I got a little misty at that. But none of the other friends have called.
DW has a friend in AZ that made a trip to visit and chatted as best she could with DW. She has called since to check and chat.
I have know of two other people going through the same thing. One of which is my sister with ALS. Whose own son only visited Sis every few months and he was the nearest relative. We live about 2000 miles away and cannot get back there for any visits. I wish I could visit and should write more often but, I could only write sad news and Sis does not need to hear that. As far as I know she has only a daughter to visit occasionally. Our brother lives in the same state but is financially strapped. He has been abandoned by his two sons
as well.
No friends to call or visit. Sis was active in her church as well and none of them visit any more. She has been in the home for nearly ten years now. And her husband and the oldest son have passed away.
We don't use social media and what has been said here about them is why. It is just the two of us.
Best of luck to other in this boat.
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Facebook is the perfect platform for people (who do nothing) to make themselves look wonderful to the world. My sister uses Facebook all the time and everyone comments on what a wonderful daughter she is. When my dad was alive she wouldn't call him on Father's Day but she'd post a wonderful message on Facebook (my dad rarely looked at Facebook) and would get all kinds of comments on her post. When my dad was dying she wasn't there. When my dad passed she came for the funeral and left the next day. She didn't stay any extra days to help my mom. But on the way home she posted on Facebook that she'd attended the celebration of the life of a wonderful man who she was fortunate enough to call her dad.She had hundreds of likes and comments about what a wonderful daughter she was. When my mom then moved in with me for a year and a half she wasn't there. She made occasional calls to my mom but never called me once to see how mom or I were doing. Four years later my mom is in an independent continuing care community. My sister visits her once a year but if you looked at her Facebook you'd think she was "daughter of the year". It's taken me a long time to get over it but now I can just laugh. I know that once my mom passes I will have no further contact with her and that's okay. It's easier to just let it go.
My MIL was widowed in her 20's and raised three small children. She gave her life to them and her church. She went to church almost every day, was involved in every committee and was the one they called whenever they needed someone. She tithed way more than she could afford and when the kids were grown the church was her life. She's now in a nursing hame with end stage dementia. The "card committee" sends her
a get well card every month. That's it. The church she gave her life to is not there for her.
People just go on with their life and don't want to bother. Unfortunately this often includes family members. I just hope that when my mom passes I can be there for other people who need support. Before my dad died I was a hospice volunteer. Maybe I'll go back to that.
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Yeah, being "touchy" is definitely a nice way of putting it, lol! I was griping about something the other day, and my husband looked at me with one of those "sideways" looks, and goes, "Wow, you're really pi$$y!" Well, yep, I was! I can laugh about it now, though...

Garden - yeah, it seems like that's what many people do. We try to keep in touch with all of Dad's relatives (which can be tiring in and of itself!), but they never call to ask how we're doing or if we need anything.

I was driving home from the grocery store the other night, and waved to my friend whose mom lives across the street from us. (Friend was in her mom's driveway.) I took a bag of cold groceries inside, and came right back outside to say a quick hi to my friend, but she had already driven away! So, I called her to say hi, and she said something like, "Oh, sorry I left! I didn't want to be one of those friends who bugs you when you're going through something..." Ummm, what?? Bugs me? What you really mean is, you didn't want to be bothered to ask how I'm actually doing. I have more than one friend who has said something like that to me, and it boggles my mind.

PSA, for anyone reading this: People who are going through a tough time need you to reach out! We aren't mind readers, and no, it doesn't help when you say something like, "Oh, I've been thinking about you!" after not calling us for 3 months. Send a card, call, ask if we need groceries, stop by with flowers or food or just to say hi, ANYTHING! Please do not ignore us under the pretense of "I didn't want to bug you." That's just hurtful.

Ok, stepping off soapbox now! Wow, sorry, guess I'm cranky tonight!
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My experience has been similar. I often wonder if others think that just b/c I'm the hands on caregiver that everything is taken care of and they can sit back and just wait for updates.
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I guess we do live in a bubble. I am the sole caregiver for my disabled hubby, an only child, and we are estranged from his family. I can't remember the last time one of my kids asked how their dad is or how I am. They are very busy with their own lives and I try to do as much as I can myself. But, it would be so nice if my daughter offered lunch out once in a while.

I think we become very "touchy" when we are tasked with caregiving and when we lose our loved one. It's not intentional or done with any malice, but when my mom passed in November, I remember exactly who sent cards and called...or didn't. It's just the nature of the beast, so to speak.
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Dear WhirledTravel,

I hear you. I think you will hear many similar stories. I don't think its only friends or church members but even family members tend to forget how important it is check in. I have to admit I was guilty of this before my dad passed. I was thinking how when people loss loved ones, I would send a card and flowers but never followed up.

I don't think it was done with any ill intent, but that people are just carrying on with their own lives. We all seem to live in our own bubble.

With my dad, I wanted so much more help from siblings but they just weren't around. They couldn't even spare me a "how are you today?" It does hurt.

Maybe if I was on Facebook, I could have said to everyone. It would be great if dad got more visitors. Or it would be great if more people even called.
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