Family members advising us to "Have patience." Why can't they keep the free advice to themselves?

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Family members advising us to "Have patience." Why can't they keep the free advice to themselves?

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I have a cousin who DMs me via Facebook every day now that my mother has been hospitalized for pneumonia & various other health concerns. No phone calls, just messaging. Mom is approaching end of life, and I'm doing everything in my power, as the only child (at 62) to make her as comfortable as possible & get her proper medical attention. She'll be going off to rehab within the next few days, and we're not sure she'll ever be able to walk again & return to the ALF she loves. It's not easy.

Yesterday, I was feeling frustrated because mom suffers constant vertigo & none of the doctors can give her relief. While expressing this frustration with the doctors to my cousin via DM, she DM'd me to 'have patience, you'll feel such a void after she's gone'. I truly felt like smashing my phone right then & there. WHY do people feel the need to make such remarks, as if we're not stressed out ENOUGH going through the end of life process & trying to make 1,000,000 decisions & keep all the guilt at bay? As if we're doing something to 'speed up' their demise?

I will no longer be DMing my cousin; if she'd like to talk to me, she can pick up the phone & call. Her sister, by the way, does call my mom and tells her all the time how she'd love to come pick her up from 'The Home' and have her come live in N.Y. with her. Meanwhile, she's never even come here for a visit, never mind anything else! If she did, she'd see that it takes 3 shifts of caregivers to care for a woman with dementia, incontinence, severe neuropathy, depression, stroke, A-fib, heart failure and about 10 other medical conditions. But hey, it SOUNDS good to make those off-the-cuff-remarks that aren't real, doesn't it?

To all the friends and family members who have Free Advice for us caregivers who are stressed out to the max, please keep it!

End of Life Family Caregiver Relationships

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Come walk a mile in our shoes!

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I've thought more about your question and wish to share two tactics from an outstanding self-help book, Coping With Difficult People by Bramson. Granted, many comments just blindside us and we turn into open-mouthed sea bass, but I've practiced these two until they are ingrained and they sure help me!

1. "This is a strange conversation. How do you foresee it ending?"
2. "What do you think I'm going to say next?"

Both are questions that place the ball in the other's court and they work best in conversation, not in DMs or texts and in this day and age, they may be outmoded. Anyway, I hope this helps and your status as front-line caregiver and an only child is respected.

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Thanks, pronker; I'll have to remember these!

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I think in many cases people just don’t know what to say so dumb stuff comes out. I also think this is why people drift away

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I am a Geriatric Care Manager and have been working with Seniors for 23 years. I specialize in seniors in long-term care. I can not tell you how many family members are quick to tell their siblings who are actually caring for mom or dad things like you are describing. I often hear these family members or friends say things like "you can't put them in a nursing home, it will kill them you need to keep them in YOUR home. " Really, I just say that sounds like a good idea, when can you be here to help out? There response is usually "I am too busy to help out", but they expect you to give up your life to provide the care.

I think it is a good idea to cut off communication with the family members who are stressing you out! You must put yourself first. If you don't then you will be the one in the hospital! I can't tell you how many times the healthy spouse dies first because they were so busy doing the caregiving that they did not take care of themselves.

Take care of YOU so you can care for your loved one.

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Thank you for a very common sense answer!!

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mmcmahon: Thank you very much and indeed some are stupid.

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My Mother’s sister is one of these you speak of.
We had a huge issue last year where my mother asked me to call her younger sister to tell her about an issue with poor caregivers. I did as she asked with an aching heart: I knew she would not respond the way my mom would have liked.
This aunt calls my mom and dad on hospice and tells of all the mission trips she and her husband go on, and visit mom and dad once a year and tell them how wonderful they look.
One person’s idea of support is not another’s.

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Ya really! My Aunt keeps messaging me asking me about Mom but she hardly visits her. It's aggravating. She never asks about me or my husband. Go figure.

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Could you message her back "I'm fine thanks. Why don't you visit her and see how she is?"

(5)

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There are many who are wanting "to give their 2 cents' worth" because they wish to help, but they really haven't a clue as to what to say or do - they may come across as quite genuine and THEY ARE. But on the opposite side of the coin, there will be people who say outrageous things, e.g, an LPN who was my mom's friend and had done some work for her until I could arrive said to me a ridiculous thing coming from a medical professional - "Don't you think that your mother had a T.I.A.?" I responded - "NO, MY MOTHER HAD A FULL BLOWN STROKE FROM ONE CAROTID ARTERY BEING 100% BLOCKED!!" At that point with my mother lying on her death bed, I WAS LIVID! This LPN runs a business and does night shifts staying with elders at their homes @ a 12-hour shift. She actually had the audacity to ask why I had an email account!!! I wanted to say "Ahhh, why don't you because you run a business?" I held my tongue. Geez.

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I'm so sorry. Some ppl I swear are stupid. Hugs

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Some of the comebacks suggested here are priceless! I'm one of those people who think of a snappy comeback after stewing over someone's asinine comment. I actually had one woman at church say that my Mom didn't seem like she had dementia. This after she said good morning to Mom and Mom said good morning back! That was the extent of the conversation and suddenly she was an expert! I don't have any great advice but I can certainly commiserate. I've learned that people, well meaning or not, can say some of the stupidest things when they don't know what to say. A simple hug or even just "how are you doing" or "I'm thinking about you" would be so much better.

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I too am an only child at 65. Sometimes I want to throw the phone against the wall, but it is my only source of contact beyond the public computer I use. I have no one who comes to offer relief to me, and I am now getting ready to move my mom to a different facility soon. Outside of having placed my mom in AL and MC, and try to credit those who work there who HAVE helped me at times that I haven't known about ( or have known about), I have felt abandoned and alone. I finally joined a support group about 2 months ago, and it has helped because all of us in the group are dealing with things that seem so hard, but we are there for each other, even if just to vent the pent up emotions for an hour, then go back to the seemingly impossible task that befalls us. At some point, all of this will end. That is a fact. THEN will begin the healing process. Right now, accept their butinsky type of behavior as really trying to be helpful to you and give them the benefit of the doubt that they AREN'T living this nightmare that you have, YOU ARE, but they really are trying to be helpful. Patience is a virtue and hard to learn to do if you are not a patient person to begin with. I am not--but I am learning to be. Too bad it takes this type of situation to finally make me learn it! I wish you the best with your situation because I certainly can sympathize with it since I am in the same boat with you being the only child and in my 60s. I had to finally retire 6 months ahead of time to deal with the increase in stress that I could no longer handle with my mom and my job. Something had to go--the job. And it would have been gone by now anyway, so I gave it head start. I never would have attached what I am doing now, and have been doing for the past 3 1/2 years, with my "Golden Years"! No one to care for me when I get older with no children/grandchildren/siblings/remaining relatives. I am already thinking about what will happen to me if I reach my 80s/90s and am in the shape my mom is in now! Something ELSE to consider on top of everything else, and NOT that far in the future!

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I hear ya!! I would probably be able to tolerate the advice and comments better if my (outside), family would at least make the effort to participate in a voice to voice call. Auntie texts to get the 411, but never calls just to talk to Mother. I used to call her once a week, but stopped because when I wanted to hand the phone so Mother could talk, Auntie would decline. That would just leave me very 😠 for days. Shoot, just thinking about it now is making me angry.
I am (or thought I was), very close to Auntie, but REALLY?!!
So, what I am doing right now is taking a break from that. My answers to texts are short, usually one word answers and yes\no questions are answered that way, not detailed.
I'm sorry you are so stressed. I don't have any advice, but I totally get it.

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I agree that your cousin was just trying to make herself feel better.

Even more, she was trying to make you feel better. A nice kind word from someone who isn’t there? You may think it’s worse than nothing but it is not.

Have you ever texted someone an encouraging word? My guess is that you probably have. My guess is that you probably were trying to comfort and send kind words to the recipient.

Based on your response, It sounds like you are quite angry. Maybe you should take a step back and take care of yourself.

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If you don't want advice why are you on here and why tell everyone your troubles. If you don't want advice when someone asks about how things are, tell them as good as can be expected and getting better every day. As long as you complain, you will continue to get advice. It is well meant and people feel sorry for you. I am sorry if this sounds harsh, but it is what it is. Most people don't give out free advice unless they are asked for it. And even though you don't come right out and ask, every time you tell someone something you are in a way asking. So now I am going to give you some advice! Find someone, anyone a friend, a child of yours or a partner and tell them you need someone to vent too. You will not ask for help but just need a sympathetic ear. We all need that. I hope this helps, its what I have done for years. If some one asks about my problems, I tell them I am fine. They don't need to know every thing and then they don't offer me advice.

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Heard, Mary, heard. Please recognize that for many caregivers, this forum is our venting space and for myriad reasons. There is a freedom that comes with venting anonymously and quickly. I don't know what I would do if I had to hold it all inside until someone I knew answered the phone to listen to me vent. This forum also is a place to gather perspective. So, Mary, I've heard what you have to say. And on your profile you clearly state that your caregiving days are over. You are a treasure trove of caregiving knowledge nonetheless.

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They’re all talk because they don’t know what else to say.. .certainly they’re not going to DO ANYTHING !!! I would not answer them or even talk to them anymore. It’s just you & your Mother...just like me but I have paid private caregiver & I live w mother...brother does very little but visits once every couple months. I’m 60 & mom 92w Dementia, incontinence, & just getting over stomach virus...it gets harder..not easier.. my mother hasn’t walked for 2 years & we use stand assist lift machine at home to go from bed to wheelchair & wheelchair to commode...
.I hope you find strength to make good decisions & find a few minutes for you 🤗hugs

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I have no idea why people make such comments, give advice, etc., when they are clueless with a caregivers journey..

Pls know, this forum, and us caregivers, understand what you are going thru..

It’s hard, emotionally difficult, draining..Your strength is a Blessing to your Mom..

Cyber hugs and prayers to you & Mom..You’re an earthly angel! 😇🙏🏻

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I hear you. My father's entire side of the family decamped to Florida 40 years ago because they hated NJ. All of his siblings are gone now, but my cousins in FL continue to give me unsolicited advice on caregiving for my brother, who is on the autism spectrum and is often uncooperative. He never married or had children, leaving me literally the only family he has left. Because he's also socially isolated himself, I'm the only person in his life he has left so I've taken over caregiving by default because of course I'm not going to leave him out in the cold. One cousin told me my brother should move to FL because the weather is so much nicer and he'd have the opportunity to go out more (knowing full well that my brother also has extreme social anxiety and prefers to isolate himself at home). After pushing the idea so much I finally snapped and said, "Really? Are you going to take the time to see him every day, take him on his errands and doctor visits, manage his finances, make sure he takes his meds and eats properly, all while holding down a job and taking care of your own household? Because that's what my life is all about now and will probably continue for at least another 20 - 30 years." Cousin never mentioned moving again.

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Oh dear, the "DMs me via Facebook every day" must feel oppressive with the every day part. Reading things really slam one with the power of print, The phone call idea you have sounds much better; she's in quite the care-free bubble.

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I apologize if the DMs are not in print; I am not on FB and perhaps DMs are visual?

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You are doing your best to be a good caregiver! I found that people either butt in without knowing anything about what we deal with, or they run, afraid they may actually have to do anything. I wish you all the best and please remember to take care of you too, even with little things you do for yourself.

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This is easier to say than to do. And I've said it before, but those that don't do? Don't know. They may be well meaning, but they simply don't understand what this is like because it's so much easier looking in from the outside. (speaking from experience as I was once on the 'outside'). It's tough, but if you can find a way to accept you are doing the best you can with an uncontrollable and so difficult situation, then you'll be better off. Acceptance. Of the unimaginable situation you are in and the angst you are dealing with. I learned, somehow, that it's not that some people don't care, but, really, they just don't really 'get it'. Stick with people who are supportive of your exhaustive efforts. And sleep well. You deserve it.

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I saw these come backs on a website. They might come in handy for a lot of us whose relatives like to give unsolicited advice.

1. Thank you kindly for the unsolicited advice. You obviously know so much more about my life than I do.
2. Unsolicited advice is like somebody singing out of tune. Nobody wants to hear it.
3. I don’t base my decisions on advice from people who don’t have to deal with the results.
4. I didn’t realize you were an expert of my life and how I should live it! Continue while I take notes.
5. Don’t judge a situation you’ve never been in.
6. Thanks but I’m an expert of my life.
7. Have more than you show and speak less than you know.
8. I must have Alzheimer’s because I don’t recall asking for your opinion. (My favorite)
9. I’m sorry I offended you by ignoring the unsolicited advice that you shoved down my throat.
10. I’m sorry, I didn’t order a glass of your opinion.

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Tempted to use some of these! I take my 94 year old motherinlaw to all her many appts for various chronic problems. Out of town SiL likes to make recommendations for new and highly specialized clinicians for her mother to see. In exasperation once, and not eager for extra appointments, I told her, Well the next time you come to see Mom you can make an appointment for that specialist and take her yourself. Haven’t heard a new “recommendation” since.

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lealonnie1 if your cousins have nothing helpful to say block them on your phone. Block them on your mother's phone if necessary. They are only giving "advice" to make themselves feel good.

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People just don't think. I'm sorry your mom is having such difficulty and I'm sorry you have to be the one making these decisions while experiencing a multitude of emotions. I hope someone will offer real help.

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When someone complains to me about something I have no idea about I usually say "I wish I could offer some good advice but since I've never been where you are I can't but I do sympathize and if there is ever anything I can do to help, let me know" I do sincerely mean that too by the way. I know there are people who offer to help and then make themselves scarce just in case you take them up on it.

Nothing like being a caregiver for a declining loved one to make you more aware of those around you. I M O.

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Yes. I also say “ anything you need. Anything at any time of day or night” and I mean it

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Maybe you should distance yourself from your judgemental cousins. People like that are a drain and that's the last thing you need. May God bless you and give you strength - you've carried quite a load for a long time.

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I think people mean well, but they just don't HAVE ANY IDEA WHAT IT'S LIKE. I know and sympathize with you completely. Some days the only thing that keeps me hanging on is my faith. This role-reversal isn't natural and the stress of 24/7 caregiving is exhausting. You are exhibiting signs of burn-out and believe me, I know burn-out. Please take - or should I say make - time for yourself, before this affects your health. 💙💙💙

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I don't believe all people mean well.....in the case of my 2 cousins, they love to judge everyone and everything, and to get their message across in "subtle" ways as in calling the wonderful ALF The Home.
MY faith has been a huge help too. I'm definitely burning out after 8 years of being an only child in charge of everything. I lost Dad in 2015 which was blessedly quick, but Mom is hanging on and the ER visits, falls and hospitalizations are frequent and exhausting. She starts rehab tomorrow to rebuild her strength but I don't know if she has the will to work with the therapists at this point. I'm grateful for this site and all the support and understanding from the caregiver community

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I'd so be tempted to block the cousin from Mom's phone.....we had a relative suggest getting a dog for my 96yo frail, huge fall risk FIL "because he could use the company". Another suggested we pop my 99yo mother onto two planes, three airports across country for a short visit. This weekend, "well meaning" people will be politely criticizing that we didn't throw a big birthday bash for my mom, who's hearing, vision and cognition are greatly diminished.

Ignore her messages - if she asks about your silence, tell her you've been too busy with your mom for social media.

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Linda, well that takes the cake!!! Sending a 99 yo on 2 plane rides for a short trip and getting a DOG for a 96 yo fall risk!! And when I think about the reality of throwing a big birthday bash for my 92 yo mom I cringe. The logistics of just getting her back and forth to my house for a holiday are a total nightmare. These people just do not get it at all, do they? :(

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Try cutting it off at the pass and taking back the control of information, make a text group of family and friends that like updates or you feel should have updates and then send out to the group daily or every other day, weekly whatever is appropriate and convenient for you. In the first message let everyone (even if it's just your cousin) know that you are doing it this way because you want to keep them up to date but a bunch of different questions coming in all day makes life difficult given all you have to do and deal with at the moment with mom's situation and it's easier for you to update when there is new info and you have time and a handle on whatever it is.

Then when you need to vent and your cousin is the person you have to vent to just preface the message with "I just need to vent", people always feel like they need to say something but have no idea, can't even begin to relate to your situation and insert foot in mouth without knowing. If you prefer to talk on the phone tell your cousin that, that's too much for me during these high stress hospital times but that's me. Whatever works best for you try taking back the control over communication, don't feel you need to answer anyone as long as your updating when appropriate.

Some day her time will come and then she will understand, but then so will you understand what she is going through. My aunt calls and says things like that to my mom all the time too, we smile and let it go because again it's just not worth the energy and I know she really means it she just will never act on it. She has always had opinions about how everyone else "should" do things. If she did follow through my mom would go nuts, she wants no part of her sister caring for her or being around in person for more than a weekend, lol but they love each other very much.

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Dear Lea, I don’t have any advice just wanted to share that my motherinlaw, who is 94 and lives with me and my husband, deals with vertigo frequently and it is so frustrating that the doctors don’t have a solution for it! She can get really sick and distressed because of the dizziness. Just wanted to let you know I share your frustration!

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Mary....moms neurologist in the hosp actually listened to me and agreed to prescribe a Scopolamine patch for the chronic vertigo which is horribly debilitating. So far, she has had NO episodes at all for the past 24 hrs even after being in an upright position and having a shower. This is the first time in months she's had a break from vertigo and dizziness. Docs don't like to prescribe the patches because they can cause more confusion with dementia, but in extreme cases, it's worth a try. The patches last for 3 days and then they are replaced. Thanks for your comment and best of luck

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'cause people just LOVE givin' it, that's why. Just remember, opinions are like a******'s, everyone's got one, everyone thinks everyone else's stinks.

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Free advice is often overpriced.

I cut them off. We have a crazy aunt in the family who I tried having patience with but after enduring years of her off-the-cuff asinine remarks, I now openly ridicule her thoughtless remarks. And I don't care who hears me. A few months ago at a family gathering to which we schlepped my FIL, I rephrased every idiotic unhelpful statement she made and asked her if that was what she was suggesting. I wore her down and she finally just kept quiet about issues regarding my FIL.

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Sometimes thats just exactly what you have to do!! Good for you!!!

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Family members advising us to "Have patience." Why can't they keep the free advice to themselves?

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