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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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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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ff, the first time someone tells you that you should cook for your folks, give them your best fake sincere smile and say "you're right - home cooking would do them a world of good - now which days each week will you be bringing them dinner".
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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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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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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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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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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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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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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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