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I've been caregiving for my Mom for the last 3 years has anyone experienced long term Friends drifting away or having little compassion or understanding because they have never been thru this journey?

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YES to both. My mom's friends have died mostly or are so,old.

I can tell you that my own mother did not see herself as one of ' those people'. She thought she was different. Special. Alas no, she was not. In MC now.
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anonymous183986 Feb 2019
Thank you so much for your input this is a great site
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Yes, it is challenging. The further along in the progression, the more friends disappear. And it is not just the person with Alzheimer's who's friends disappear... The caregiver's friends also tend to leave. I know I had to really work at keeping social while full time caring for my mom. Mom had some friends who stuck around for quite a while... Then some who continued to call and check on her to the end. I was blessed with a supportive husband, and adult children, and grandchildren. I also had a couple of friends that called and kept me sain.
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anonymous183986 Feb 2019
It is challenging I have one long time Friend who used to call me all the time perhaps a little too much now I realize that the phone conversations were pretty much about her when my Mom's caregiving needs increased and also she was in and out of the hospital and rehab I no longer had the strength or time to contribute she had no understanding of the situation nor compassion the phone calls are now far and few but I actually feel relieved and have gotten closer to other Friends that have take care of elderly parents I hear you its very hard balancing the social and taking time for yourself during this time My Mom is 95 and her Friends who are younger always call and send flowers my Husband and I got married for the first time no children but like yourself he's very supportive his Father is also in an Assisted living close to my Mom's.
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Yes, so called friends started drifting away even before DW was diagnosed. Now only one of them ever calls or checks on her.
DW would really love to see them too. Even though she cannot speak clearly if she talks at all. She would really love to sit down and eat with them some of her favorite foods that I cannot prepare.
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anonymous183986 Feb 2019
Thank you for your reply its very hard to see them drifting away perhaps they will not get it until they are presented with this journey it wouldn't take much to spend a little time and have a meal some people just cant handle being around declining people sad
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Hi. This is where you find out who’s a friend and who’s just an aquantince. I have been very lucky that even now that we have moved away his friends still call him and inquire after him. I have several I could visit with at any time. So lucky. It’s family that usually let you down. Besides you don’t have any time for those people anymore. Even if it’s just one good friend that’s all you need
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anonymous183986 Feb 2019
Hi, Thank you for your response yes my Brother is out of state and pretty much a non participant I have actually gotten closer to Friends that have been caregivers and they offer to help
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I think the important thing is that you've put your finger on the reason - they have no compassion or understanding because they have no idea. And it is certainly true that this is when you find out who your real friends are.

If your friends still have parents and husbands and wives, there is a good chance that one day they will look back and understand what you're going through now, and regret that they didn't do more. But for one thing, this is not something you'd wish on anyone, no matter what; and for another, how you support them then is about what you're like, not what they were like before they learned better.

Do you have individuals in mind? Are there things they could do for you if they knew what to do? TALK to them!
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anonymous183986 Feb 2019
What hurts alittle is when my Best Friends since high school simply avoids asking me about my Mom and the calls have been much less she has always been somewhat needy and I simply dont have the time anymore my other Friends that I have become closer to have been through this journey and offer to help. It's actually becoming awkward when I speak to my long term Friend I've changed and I dont think we will be as close as we were she actually told me at one point "well you know your Mom is 95" which hurt I get it.
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Yes, a lot of friends disappear. Interesting thing is some friends get closer too. The friends that are or have been care givers tend to get closer. Three of my high school care giving friends call, connect over FB, email, and have dinner together about once a month.

I think our friends with "normal" lives just don't know how to adjust to our different lifestyle. They get discouraged after we turn down too many invitations to spontaneously meet for lunch/dinner/movie/shopping spree or don't know what to say about the stress or challenges we face. I think this is similar to the divide earlier in life when some friends have kids and some do not. When I do meet up with the "non care giver" I try to be honest but somewhat superficial about what's going on - "Mom was going fantastic until she fell last fall and hurt her knee but now at 87 she's slowly healing back to independence." Then I go on to ask about their husband/work/hobby/kids/grandkids. I do not expect support from the non-care-giving group, although I do enjoy some socialization with them on occasion.

I encourage you to reach out to the non-care-giving friends and extended family too. If there's a church/family or community party/picnic scheduled, if at all possible make arrangements for respite caregivers and attend or take your LO with you. Ask for reasonable help when you need it too. Last summer I asked one of my cousins to help with the logistics of getting my mother, 4 yo grandnephew, and our food from the car to the family picnic pavilion; asked a different cousin to help us load up to leave and everything went very well. Now that my mom needs a wheelchair to cover distances, I will call ahead and ask if an attendant can assist us getting into and out of a venue (mostly staying with my mom while I park or get the car); they may ask me to come at an off-peak time but not one venue has denied my request.
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anonymous183986 Feb 2019
Thank you for your heartfelt response when I do meet up with a non caregiver Friend like yourself I don't go into detail about what's going on I've started to somewhat reinvent myself getting involved in new activities groups my Mom is now on the lowest level of hospice in an assisted living so it frees me up a little bit to resume swimming and other activities.
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Thank you so much for your input I have fortunately hooked up with Friends on the same page and actually due to arthritis I swim with seniors in a therapy pool I'm 59 but they are very social and have been thru this journey and have lost parents I'm really trying to balance activities and taking care of Mom. I cant fault Friends that don't get it caregiving changes you a lot for the good.
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yes, I dont have much friends.. I guess they are tired of me complaining.
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Absolutely, I watched my mother’s friends mostly drift away, and found that mine could only handle limited conversation about my aging parents and their issues. It’s the reality of human nature that most people don’t want to hear or be around what they perceive as the negative parts of life. They don’t like that it could one day be their situation, or they don’t know what to say, or they are just caught up in their own lives. I feel the disappointment but I also came to a place of accepting that they’re still decent people, friends for what we like about them, not what disappoints us, and if the tables were turned I don’t know how much I’d want to listen either. I’ve found it best to stay in touch, though it may be less, and not ignore my dad, but also limit how much I focus on his situation in conversation. One day he’ll be gone and I’ll need those friends despite their shortcomings
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Yes. It happens. Fortunately for my mother she still has close friends who call her and visit somewhat regularly. Me on the other hand see friends become suddenly silent if I say anything so I mostly don't mention it. If anyone asks I just say "oh, she's about the same." I hold no grudges because before my mom got the disease I know I reacted similarly. I had no clue how it affects everyone, did not know what to say, and frankly was scared it may happen in my own family. When it did, boy I tried to learn quickly and now hope I can be of some benefit to others on this road. Also, fyi you aren't alone you have all of us :)
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I think Daughterof1930 and some others may have hit it right on when she said people just don't know what to say. I have experienced this with my friend who is caregiving for her mom. I try to be there for her to vent but sometimes there just isn't anything I can say to comfort or encourage her, and there have been times I have absolutely said the wrong thing!

As a caregiver's friend, it's hard for us, too. I just want to make it better for her, and I can't. Unfortunately, it is easier for a friend to walk away or move on than it is for a caregiver, who is in it for the long haul.

I'm truly sorry that caregivers, who not only have their plates full to overflowing with all that is required of them in taking care of their LOs, also have to work at maintaining relationships with what should be their support system. Hugs to you all! 💖
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