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So my mom contacted an agency for help. She calls this woman. The woman is on the phone, loud where I can hear her. I heard her say, "Where's your daughter? If she's not gonna help you...". I lost it. I heard her say "Everybody needs to do their part paying the rent and the bills. I lost it again. I have paid rent and bills amongst other things. I had to leave the room. I understand my mom needs help but that doesn't mean I haven't been doing my best. I'm so mad. If I call her directly or go over there, it might not be good. I have been taking care of my mother by myself for over 5 years; and it has gotten progressively harder. I have been chronically ill for the last 2 years. I managed somehow to graduate from one school and I am about to start at another. Plus I am young too and trying to navigate this world for the first time.
My mom tried to speak up but I feel that once the woman started in with the "Your daughter" stuff, she should have cut her off immediately. How do you handle it?

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All the time. Typical. It feels as though nobody cares how YOU are doing... you're supposed to be the be-all do-all for the patient. A friend told me to reply, "I'm doing the best I can." and leave it at that.
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Oh my, yes. Mainly, I handle it by knowing that I AM doing the best I can and ignoring the ignorant. I do get mad, but really, what does that achieve? Keep on doing the best you can and be happy with your accomplishments. Only you can judge yourself fairly.
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The woman from the agency who said those things to your mother was out of line and should be reported to her supervisor.
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I took my dad home from a facility after they ignored and then misdiagnosed his cries of pain and, because I finally called 911 to get him to a hospital, they found he had a blocked urethra and sepsis. He has been doing great the last year, but the VA had the nerve to come to my house and tell me I should be cooking him more "home cooked" meals and cutting him up fresh fruit and getting him to eat fresh vegetables. I am a single mom who works full-time and constantly on the phone trying to find an aide agency who will do what they are supposed to do to care for my dad...who is the VA to come in and tell me I am not Betty Crocker? My answer to them..."You think you can do a better job? You come and you cook for him! I am doing the best that I can." As long as you know in your heart you are doing everythingyou can for your mom, it doesn't matter what other people say.
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I didn’t go thru it with my parents per se, because I was Always There for my parents – it was my last chance to do, give-back, what I could for them. I too was younger, to “older young” parents – and I would do Anything for them, to give-back for Everything, the many blessings they had bestowed on me all my life.

But, from agencies, I did rarely/occasionally hear “What about your daughter?”, or words to that effect – and often heard it as referred to other patients at Stroke Center therapies, hospitals, SNF’s, etc – as well as connected in “respite caregiving” I did for others after my parents were gone.
In those cases (and the minimal way I heard it for me per se), I think it is said by lesser caring “caregivers”, not thinking, and using us as their scapegoats.

I had an unrelated personal issue recently, and an ol’ friend wrote back with:
“You’re a scapegoat. It saves people from having to look at themselves and their own lives. They can compare themselves and pat themselves on the back. Being humble used to be a virtue. Sadly lacking these days. Of course, the vocal minority gets paid too much attention. People look at me and check my elbow to see if I'm a junky when I'm too thin. Or feel sorry for me. I hate it too.”
(This old friend often comes back with wise insight. I think she pretty well hit the nail on the head here, too.) Sad it’s that way – but society has changed since the days I grew up, and I don’t care for these changes.
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Raina, take a deep breath.

I agree, it is UN-believable. This woman gets a call from an elderly lady, immediately gets hold of the wrong end of the stick, and then will not let it go no matter what.

She's a professional, she really should know better. But, sadly, and I'm never surprised any more, even people who should know better quite often don't.

I've sat there and watched senior people appear to believe every word of the b/s my mother is feeding them. Sometimes, the operative word is "appear" - they are in fact taking the story with a pinch of salt, but they don't contradict or challenge their clients - they just check up later. But sometimes, they are actually believing it and you just have to think to yourself "how long have you been doing this job? Have you heard of dementia?"

So, back to the deep breath. You call the agency, and mustering every ounce of patience you possess, you calmly explain that the history taken by the person your mother spoke to needs to be corrected in several essential respects. And then you tell them what the accurate picture is.

Don't blame your mother for not speaking up. It is very hard to separate a dog from a bone.

All will be well. Just hang on to your temper, whatever happens, or misunderstandings will multiply. Best of luck.
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This is easier said than done, but you need to be less defensive.
Whilst this careworker was, in my opinion, unprofessional to make such comments to your mum without knowing the full picture (and I don't think you'd be out of line saying so in writing to her supervisor), this was NOT a personal attack on you. When these people don't know you, then their comments are not meant as attacks.
Let it go. You know how hard you've worked, and much as we all crave someone to notice and tell us 'well done', sadly it does not happen often.
There's always someone with an opinion. Just count to ten. Learn to separate comments from attacks.
Sounds like you are just raw from this. Caring grinds us all down, and is often thankless. That's why this site is so great, you can talk to folk in the same position, and WE can tell you how amazing you are, because WE understand exactly what you have had to sacrifice to care for your mum, and how bl**dy hard it is.

...to the lady who got upset at being given dietary advice for her dad, that is all it was, advice. That's just their job. It did not sound like an attack or a judgement.
Again, try to count to ten and you'll be able to spot where there is no malice meant.
Don't beat yourself up that you're not down the farmer's market picking up fresh kale and spinach every other day! (Like they'd eat it anyway?;)
Frozen veg are better than no veg.

Got to develop skin like a rhino as a carer.
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Miller: you hit the nail on the head: “You’re a scapegoat. It saves people from having to look at themselves and their own lives. They can compare themselves and pat themselves on the back". Awesome and so true reply.
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Dear Raina, deep breaths and learn to get a REALLY thick skin and store up some good come-backs so you'll have them in your holster and ready to shoot back anytime someone has the gall to "are you sure, why r u doing this? that? certainly u can do better" rubbish. Harsh, but true. Sad, but that's life. You can talk til u turn blue to explain how and why to some people but once they've decided they know what's right to them, may as well brush them off and carry on.
My father is currently in a nursing home. The Social Service lady came up to me last week in front of my father, "He wants a TV in his room, he said he wants a TV, you need to bring a TV". Of course my father will parrot what others say, so the next hour was "when are u bringing me a TV"? This NH does not provide TV or cable, we have to provide TV and pay for cable services. My dad broke the last 2 TV sets by pulling them over since he will hold onto anything to pull himself up out of the wheelchair. He doesn't know how to work a remote, I bought the simplest remote sold and big so he doesn't have to fumble with it. He could turn it on...then NOT turn it off. Yet I'm being told that this is what I should do....not taking into consideration that my father has not watched TV for over a year, no attention span...but back to YOU.....you do what you can, nothing more, you don't push yourself to where there is nothing left....please listen to us who advise you to always take care of you first. Not a selfish plea, but wisdom spoken from years of caregivers who have about killed themselves to take care of others. Do what you can. Research online or locally for help. REPORT this woman who thinks she knows you and your care for your parent. Expect the same from family members, they always know best, better than you, of course, they will have expert advice without ever coming to visit or spend months of 24 7 care. Please don't let it get you down and please continue to post and let us know how u r.
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Lots of wonderful advice! I have nothing better to add. I will support the sound suggestions posted here. People here care!
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100% with KalaFW!
I have a meeting with mum's consultant in hospital ghis afternoon, and my pompous older brother, who has not been to see mum more than 3 times this year, has decided that because he is working from home today he has deigned humour us with his presence at the meeting!
He knows absolutely nothing about mum's issues, but that won't stop him making stupid uninformed comments.
This should be fun :)
(H*ll, he may even surprise me! But I'm not holding my breath)
I'd love someone else to step up to dealing with doctors, would tale a load off me, but my brothers pop in and out, so to be honest just disrupt things.
Big hug to all the carers out there! xx
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Agree with all the great advice here...don't personalize! Last year, my coworker went ballistic at the discharge nurse. Her mom had Alz, broke her shoulder and now a plan needed to be made. The nurse stated, "some people care for their parents at home, some prefer them to go to rehab" My coworker took this as a personal insult that she wasn't caring for her mom at home. She refused to listen to the rest of the conversation and didn't get the best care for her mom. Understand that professionals have a job to do and may need to provide certain information due to regulations.
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I think we all go through that because no matter what our situations as caregivers, other people have their own view. They can never totally understand our lives and they don't understand our unique challenges.

Many professionals do their jobs as they are trained to do them, but it takes someone really special to get across the point that they are giving choices and advice that they know may or may not be helpful in your situation. Sometimes its a matter of "take what you want and leave the rest." That was generally my motto. I am completely open to learning from professionals if they seemed to have even a clue about what family caregiving is all about. However, I've always respected professionals who realize that they can learn about reality from listening to family caregivers, as well.

As is generally the case, you've found people in this community who relate to you and who have advice and stories to tell. Just knowing that people are "listening" often helps.

Try to get help through your Area Agency on Aging or your state website (type "aging" next to your search for the state). You'll find a long list of agencies and contacts. Work your way through and we can hope you'll find some resources in your area.

Mainly, know in your heart that what other people think about your caregiving isn't as important as what you think. Be open to learning but remember that you know your family situation.

Best wishes as you travel this journey. Please check back with us so we know how you are doing.
Carol
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Dear Raina, know that you are doing the best job that you can!!!!!! There are always going to be people that will not understand exactly what you are going through, unless the have been there themselves. Most times the one's with the loudest voices, have no idea what you are dealing with. Just ignore people, and know that you are doing the job no one else can or will do. You are stronger then you think. Have faith that you are doing your best. And yes your best is good enough. At the end when it is all said and done, know that you were there for your Mother when no one else was. Keep looking up, continue with your going to school, you still need something just for you. It will be alright. I will be praying for you.
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Pretty much the only one who hasn't tried to lay some blaming/shaming "you're not doing enough" crap on me is mom's primary care doctor because she is also MY primary care doctor and a human being and more than gets that I'm doing the best I can and it's taking it out of me to do it!
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Some people need to be taught not to jump to the nearest conclusion, which is typically that everyone else has just been incredibly stupid or negligent! It's the simple principle that the easy problems have been solved already. Every now and then, sure you find someone has not thought of the obvious, but most of the time they've tried that already. Raina, et. al. you are under no obligation to educate these people, BUT if you can ever safely corner them and set them straight, you will be doing them and everybody else they are going to professionally interact with a big favor.
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It seems that the problem of others voicing their opinions is one of the greatest demoralizers there is in caregiving. They have all the answers and not much in the way of facts. You do have the support of many on this site, although it might be the silent majority, it is support. You will make mistakes, but you will learn. The best you can do will most likely be better than what many pros can do. Just try to keep a positive attitude and try to not let the negative few (who are outspoken) overshadow the positive many. Ask yourself: "Where does negativity come from?"
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It helps to keep it in perspective. This was one rude, unprofessional woman who behaved in a very unprofessional manner. You're stressed and took it personally, understandably. I would probably react in the same way.

Turn your frustration to action. Call your state and find out if this agency is licensed and how to file a complaint against it. Search online for a ombudsperson aencies that assist caregivers and elders with a variety of tasks. Ask if they have a complaint list of agencies that aren't suitable for caregiving. Complain to the BBB. It probably won't do anything but at least there will be a complaint on record.

Don't even bother calling this agency anymore; don't apologize or explain. You don't need to, and to do so would only seem to validate their accusations.
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Raina28 - I feel this way everyday as well, by family,neighbors, so called friends at times, and some strangers too. Im sorry you went through this and that lady was wrong, you should complain to her boss. Your doing a great job and also, you need to worry about you and congrats on your schooling!! Im proud of you!

You should look for another agency. And That lady needs to realize that she wouldnt have a job if there wasnt a need/reason for it! Plus its always easier for those who never had to be there to help a loved one, balance health issues such as yourself, balance life, they wont be able to understand completely. You and your mom hang in there and you both are in my thoughts.
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Don't blame your mom, for heaven's sake. She may have been as caught off guard as you were. And you were caught off guard and flabbergasted because you left the room it made you so mad. You could have taken the phone and straightened her out.

In exploring a senior's options, it only makes sense to explore their children's current and possible future contributions in terms of care and support. She didn't know your situation. Put it right out of your mind.
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There's also an interesting dynamic going on here. Someone calls an agency for help, the person responds in a hostile manner asking basically why the caller isn't helping (assuming facts not in evidence). Caller gets angry.

Instead of having to respond to an inquiry for providing professional help, the person who answered the phone shifted the responsibility back to the caller.

This seems to be one of the dynamics in one of the many posts on here about family members not helping but rather accusing the caregiver of inadequate care, mishandling of finances, etc. Absolve yourself of any blame or liability for not participating in someone's care by accusing the caregiver of wrongdoing.

Miller's comment about scapegoating, blame shifting and self congratulations is right on and gets to the heart of those who offer advice and/or criticism but not the help that's needed.
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You might take another approach, instead of reporting her, or complaining to her. Clearly, she was showing her ignorance of the true situation. Perhaps, a call to her, in the guise of "thanking her" for trying to help your mom. Perhaps say, that, since mom doesn't have the cognitive ability to pass on her suggestions, you'd like hear for yourself "what else we can do"? Then, before she starts talking, say "Let me make sure you know what we've been doing so far, so I don't waste your time, mentioning things we've already been doing". Then tell it like it is! Tell it all ! Don't let her get away with any more false assumptions that you aren't doing what you can. Then, if she persists in suggesting you do more, push the point that IF you could do more, you and your mom would NOT have called for help. Reiterate, you are asking for help. Telling you to do more than possible is not helpful. See, if perhaps she really does have any good suggestions. You never know.
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My husband has alzheimers, in a home the last 3 months because I could not take care of him anymore. I am 65, had gotten too hard to lift and carry him, I was only one taking care of him . But when he was home, I could not believe the things people would say. I wasn't feeding him right, the bed was not right, I needed to spend money and redo the entire house for him, I was going to give him bedsores. All from people who had not even seen the man in at least 5 years! Nothing was every right or good enough as far as these people were concerned. They are not true friends, I no longer speak to them anymore. And I feel better! Ignore in the insensitive rude people. Easier said than done, but try hard to avoid nasty people.
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This goes with the caregiving job - not a pleasant aspect but it's always there. I've found there are two levels of people who will do this - the professionals who are helping Mom and you. And the friends and family who will offer their opinions, suggestions, criticisms. None of these people know what you know, how much you do/have done for Mom. If there's a difficult mother/daughter dynamic, they won't know that either. Most won't want to hear explanations especially family so don't spend much time. Keep telling yourself you are doing the best you can to care for Mom, that you are the one who stepped up to the plate to care for her. Caring makes me think of the Paul Harvey "And now for the rest of the story".
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If I were to judge myself according to what others think I would probably pull the plug. No one knows what it is like taking care of the elderly until you do it and I have been taking care of my Dad for 4 years. He is 98 and I had no idea how difficult it would be and time consuming. But it is a blessing and I love my Dad as I am sure you love your Mom. My brother and sister always have better ideas, etc, but they do it from a distance and never pitch in to actually be of any help. I know in my heart that I am doing a good job and my Dads health and over all condition speaks to that fact. So, if it doesn't apply, let it fly and use your energy to do what needs to be done.
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You have no idea where the help you need will come from and if this is a governmental agency, it isn't like you can just go to another one. I'd try CM's suggestion, use a pleasant but businesslike attitude and one of "how can WE work to get Mom the help she needs". I've found that once the care support people see that you're not just bailing, that you're in there helping (but have limits), they will work with you.
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Sad to say the hurtful comments made me question my caregiving at the time. Looking back to before he left the house, I was doing a d*mn good job. Heck of a lot better than those silly 'suggestions'!!
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Dear Rains this world is full of ignorant people who are quick 2 judge. Some Relatives too. You know your doing your best. Try 2 ignore such comments you Dont need 2 waste precious energy on negatively. Be as positive as u can . the feed back you have received is all excellent advice ,Take it in and pat yourself on the back.
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That definitely wasn't fair of the woman at the agency. You really can't know the whole story from a phone call.
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dealing with judgemental outsiders and family is probably the most frustrating part of caregiving . aps pegged me as a lowlife who was living off of his mother with the intention of inheriting her house . only recently while dealing with the same two ladies on my aunts behalf did they learn that i didnt inherit my moms house at all and in fact scurried back to my shack in the hills just like id told the attorney i would do 8 years ago ..
just follow your conscience and let the " professionals " figure it all out when they grow up a bit ..
stand up to them . any weakness on your part they will see as confirmation that youre a fraud ..
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