Out of state “friends” hardly there and know everything

NMF · January 7

I am so exhausted as most here are. I need a moment to vent some frustrations. Why is it family and friends from out of state feel the need to input opinions after little to no contact except maybe a 15 minute phone conversation every 4-6 months. One has little to no knowledge of disease progression let alone what has occurred in detail for the past year and a half yet is all knowing after only 15 minutes.
here we are as caregivers spending hours dedicating time to audiobooks, online support groups, dr appointments, adjusting to altering moods from minute to hour or from day to day… being loved one minute and hated the next… endless hours spent sobbing in silence AND one person seems to want to give advice from a 15 minute phone conversation when residing in another state? It is so difficult not to want to welcome the individual into the daily happenings from day one to now and one should really reconsider such responses or do some research and act a little more concerned than a 15 minute phone conversation once in a great while.

WIGO23 · January 7

Spot on! The unsolicited advice I get makes me want to tell them “Kiss my Grits!”🤨

BPS · January 7

The 2 kinds of relatives that I have the hardest feeling for are those that give advice with no knowledge of what is really happening after a short conversation and those that don't care enough to even have a short conversation. Nether one of them respect the people or situation.

H1235 · January 7

Mom is in a nursing home, so I know it’s a much more difficult situation for you, but I still deal with some crazy family and friends. My brother visits mom fairly regularly, but has his head firmly planted in the sand. He has only been to 1 doctors appointment with her ever(no dentist, pediatrist, sleep doctor, eye doctor, hearing specialist, no conversations with her counselor nothing) and he rarely if ever asks what the doctor had to say. I doubt he has read anything about dementia, but was constantly arguing that mom could do things she was not capable of. At this point I just avoid talking with him as much as possible. My moms best friend told me my dad (who has passed) would be so disappointed in me and for what I am doing to my mom. My brother was included in decisions, but apparently he has done nothing wrong. She only visits her about every 6 months. Who would say something like that, even if she didn't disagree with the decisions it’s none of her business! I will never talk with her again. My uncle thinks everything can be cured with cbd gummies, but thankfully hasn’t pushed it. He tells me often it’s like she is living in a prison(because it’s locked). He is 86, so I cut him some slack, but it still hurts.

Lilydaisy · January 8

https://alzconnected.org/discussion/75037/out-of-state-friends-hardly-there-and-know-everything

My advice is to forget them for now. They may be important to your former life but not the current one. There are many people who are willing to offer support from a distance but few who want to "get involved. " The circle of friends closes. It doesn't mean they will no longer be friends, but it does mean they can't handle the difficulty you and your spouse are going through now. Some people are just better at handling this than others. I'm sorry to be blunt about it, but I feel that is the reality.

tonyac2 · January 8

Some people love being the expert and giving advice. That way it looks like they’re doing something helpful without actually doing anything helpful. I stay away from those people.

Biggles · 11:34AM

Oh yes all so knowing and knowledgeable full of what you should do, how you should do it. It does my head in and takes all of my energy to keep my south shut. I agree with Lilydaisy these people were perhaps important to your other life but are now no longer relevant. Move on and find those that really do care and understand.

howhale · 3:24PM

This is such a frequent issue for all of us in this situation. I encouraged family to just sign up on this forum, if only to read the posts and become informed. None ever acknowledged that they did. I don't know how to get through to them about life inside this nightmare. I suspect what others have suggested may be correct in that they are afraid, don't want to know the reality, assume they already know the truth because they read one article, etc., etc. This disease scares so many, and I understand why, but it does create hardships for those providing the care for the loved one. I had family who would visit for an hour or two on occasion tell me they did not see what I shared as her condition. That persisted until that one, fateful day when they visited and her condition had declined such that only an idiot could not see the truth. As you might suspect, they were shocked and wanted to know how this could happen so suddenly. Of course, it was not sudden at all but a little bit every minute, every hour, every day. As harsh as it seems, I agree with the advice of others, you just have to let them go because your job leaves no time, energy, patience or desire to cater to their ignorance. Maybe they will come back later but, now being on the other side, you may well face another issue in that they do not understand the grief process that we live through after and have so many mistaken assumptions about how we should "move on". Good luck as you all do the work of often unrecognized angels providing care for your loved one while living in a what might be described as "hell on earth".

nantucket · 6:04PM

wow! This really connects with me as well, as I have received more than my share of unsolicited 'advice' from my husband's family. I have zero interest in ever having contact with any of them , as they hurt me so deeply with their words and actions in this past year that I cannot even think of any of them without feeling physically ill! Like you, we only ever had contact with any of them maybe once a year, and his brother had not been in contact for almost 5 years before my husband's fall, which landed him in the hospital and the dementia diagnosis, etc. etc. I let them know about his fall, and any relocations to a different facility, but all of a sudden they seem to be experts and want to be involved. The brother was and is a horrible person, who called me all sorts of terrible things and threatened me, as though I caused the dementia et al. It has been a nightmare in person to have been dealing with my husband's decline, but to add to it the terror and hurt they all made me feel just put me over the edge. I agree with everyone above who said that you should stick with those around you, those close to you, and cut out all those who do not serve or help you. This disease is hard enough on bith the patient and the caregiver, without the added stress of juggling a-holes! I am very happy to have found this forum, as no one else could possibly every understand how difficult it is. Believe in yourself and rely on the professionals and the research etc. ❤️

H1235 · 9:32PM

I’m a pretty easy going person and if someone wants to share idea with me on how I might handle a difficult situation I’m ok with that ( even if they don’t have a clue what they are talking about). I like hearing the ideas of other people (preferably the ones that have some idea what they are talking about). I see this as them just trying help. The problem I have is when I am TOLD what I should or shouldn’t do and it is presented as fact and a solution to all my problems. They know nothing about the situation but know without question how things should be handled. Grrr, these people are awful!

panthersfan · 9:46PM

I'd like a quarter for every time some one tells me to "remember to take care of myself".

Out of state “friends” hardly there and know everything

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