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I brought my mom to the hospital tonight. She's 85 and has CHF. It's been a very frustrating year. She only got bad this past winter/spring when she had an pneumonia-like infection. She waited and waited to go to the doctor, until I finally convinced her she needed more than bed rest. That started a downward spiral.
I don't have the room to go into all the details, other than she waits until things are at DEFCON 5 before she'll consider medical intervention. A few weeks ago she started filling up with fluids, her legs became so swollen it caused non-healing leg wounds (btw, she's not diabetic). The wound doctor had to convince her she needed to talk to her cardiologist, who took her off Lasix and put her on different, stronger diuretics. They did the trick, but now she's dehydrated. I called her cardiologist yesterday, meds were changed. But she fell today.
So now she's in the hospital. She hasn't been eating much or drinking much. And the hospital doctor just called me and gave me grief about her not eating.
What can I do? She's 85, with all her mental faculties sharp. If she refuses to eat or tell anyone how badly she feels, what am I supposed to do? I can hardly hold her down and force food down her throat?
I'm so very frustrated! Every elderly site you go into tells you "don't treat them like children!" Well, then how do I "make" her eat, go to the doctor, etc?
I have great support from my family, but she's my mom and I feel like she's my responsibility. And tonight, I am feeling very alone.

I’ve often had to remind medical (and non-medical) people that my father is of sound mind and has the legal right to make his own decisions...even the bad ones. Honestly, if she’s really not eating well and not seeking appropriate medical care when necessary, I would consider hospice. Hospice is no longer just for individuals whose death is imminent. And she’ll have a team of people visiting her regularly and on call for her emergencies. The good news is, by having nurses visiting and assessing her weekly, some of the DEFCON craziness might be avoided. Just a thought. Hugs and wish you and your mom well.
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Reply to Canoe63
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Ask the doctor what he thinks you can do. If by law they can't force her to eat, either can you.
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rovana Nov 13, 2019
Love it!  By all means ask what you are legally allowed to do to your elder. Maybe some reality will set into the doc's minds.
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My personal experience with hospitalists is that they are hospitalists because they are jerks and can not be in practice, one visit and no one comes back.

I hope that you have asked how they propose that you get her to eat. Does she have an end of life directives in place, so some over zealous hospitalist doesn't force a feeding tube or some other death avoiding tactic. Unless she has requested full code measures.
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Reply to Isthisrealyreal
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notgoodenough Nov 14, 2019
Well, the doctor who gave me such a hard time has been a no show, haven't seen nor heard from him since that first night. She's still not eating in the hospital, they bring her trays of food and she sends them back mostly untouched, so if he does show his face when I'm there, I will point that out to him. I may even add a snarky "What are YOU doing to her? She's not eating".
I'll have to see what sort of mood I'm in should that opportunity present itself.
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Another thought;

Since your mother refuses to consider seeking medical attention when she is clearly in DIRE need of it, you might consider refusing to take her home; I think you'd be entirely within your rights to do so, if a doctor is questioning what YOU are doing to her that she's in such terrible shape.

Have you talked to the social work department at the hospital at all about what next steps for your mom are? I'd go talk to them.
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Reply to BarbBrooklyn
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missmacintx Nov 15, 2019
I agree. If a doctor accuses the caregiver of inappropriate or neglectful care, I think the caregiver should push back and ASK him to make the MANDATORY REFERRAL TO ADULT PROTECTIVE SERVICES, or apologize!!!

These young doctors are absolutely CLUELESS about the challenges of managing patients who are still considered LUCID, COMPETENT, and LEGALLY ABLE TO REFUSE MEDICAL TREATMENT!

We need to remind them that patients still have rights, and so do caregivers. Just for legal reasons, I would not be willing to risk going to jail over an accusation by either patient or doctor that I was personally responsible for the poor decisions made when the patient made those decisions.

That would END MY CAREGIVING. I would refuse to continue.
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Also, in my experience with my own Mom who had episodes of CHF, is that when she was experiencing increasing symptoms of CHF, she didn't want to eat because her lungs were filled with fluid plus, in addition to the buildup of fluids in her legs that is easily seen, many folks have a buildup of fluids in their abdomen as well, adding to the refusing of food and fluids, and there was little room for food and when she did eat, it only made her breathing that much more difficult. My Mom was a Defcon 5 type personality too, hated going to the Dr, and would put it of until it was almost too late.

It's not your fault that she waits too long to be seen as that is her personality, unfortunately that is something you have to work on together for your sake as much as hers! It's terribly frustrating!
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Reply to staceyb2
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I am a battle-scarred veteran of aging parents, paramedic calls and ER visits. You know you are a frequent visitor when they see you, laugh and say "don't forget to let us punch your card before you leave"!

You have nothing to feel guilty about. Your mother is an adult. She has her mental faculties so she shouldn't be treated like a child. If she lives alone and can get her own meals, your only responsibility (and your support system) is to make sure she's able to get groceries or do her shopping and drop them off. If she lives with you (or vice versa) and can get her meals, then you (and your support system) need to make sure there is food for her to eat. If she lives with you (or vice versa) and is unable to get her own meals, then you (and your support system) need to make sure there is someone to bring her meals when she needs them.

When the doctor calls to give you grief because she's not eating you should reply politely "she's an adult, we make sure she has plenty of food that she likes and that she can get to it when she wants it. If she doesn't want to eat it, perhaps you should discuss that with her". I had a doctor give me the evil eye when my dad made his last ER visit before he died. My dad stopped showering for probably 2 years before he died. He would make a show of getting in the shower but I know he just got wet. I'm pretty sure he was sinking into vascular dementia, (something my mom said was laziness and nothing else) and regularly defecated in his shorts because he couldn't make it to the bathroom in time. Both of them were somewhat mobile then and able to 'care' for themselves during this time but when my mom was hospitalized for a long period, he really declined.

When he was admitted during that last visit, the nurses were changing him into a hospital gown and rolled him over on his side and gasped. I assume it was ugly and disgusting. The doctor shot me the evil eye and started to say something when I said "Sounds like its really bad back there! He won't shower anymore and rarely makes it to the bathroom in time. I draw the line at tending to my dad's backside because I have my hands full changing my mother's diapers and cleaning up her colostomy explosions. I leave my father's butt to my brother". The evil eye softened considerably.

Unless you are a frequent flier to the same ER like my folks were, most hospital doctors may only see you that one time. Unless this is her regular physician, these doctors see patients in a snapshot of time. And to be fair to them, they don't know if they are dealing with elder abuse or a pain in the butt diva like my mom. That is why you shouldn't take their grief personally and just let them know "hey, we offer food all the time, we fix it, we put in on her tray, we entice her with her favorite desserts, she just won't eat".

But in the end, when you are dealing with someone who still has their mental competency, it's their life. I well understand the frustrations of a DEFCON 5 parent (I had 2). My folks wouldn't have had nearly the health issues they had if they had been my children and not my parents. Why? Because I never asked my gravely ill children 'do you want me to take you to the ER or call 911? No honey? Ok, you just lie there and shiver and tell me how sick you are in while I get ready to go to work'. NO, you throw them in the car or call 911 and get them help ASAP. You can't do that with a capable adult. Even IF you call 911 against their wishes, if they are conscious and lucid they can refuse to go (and have).

I'd be more than happy to describe to your mom the horrors of what happens when you ignore health issues until each is a crisis and when death is the best thing that could happen. But if she's anything like my mom, she'll probably say "you worry too much".
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Reply to Texangal81
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Daughterof1930 Nov 13, 2019
You make a great point. The docs, especially the hospialists in use now, only see our elders in a small snapshot of time. They really have no clue what the day to day is like
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Thank you for your support!

I was overwhelmed last night, and to be honest, feeling a little sorry for myself. But the more I thought about it, the angrier I get at this doctor. You're suggestions of throwing it back in his face, so to speak - "what do you want me to do if I provide the food and she refuses to eat is?" really resonated, and if this doctor comes in when I go to visit today and starts to give me grief again, that's exactly what I'm going to ask him.

I truly appreciate the responses. Logically I know I'm not the only person who has ever had to care for an elderly parent with declining health issues, but does it help to actually hear from people who have "been there, done that" so to speak.

Again, thank you everyone!
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rovana Nov 13, 2019
Like that idea of "throwing it back at the Doc" - actually what you are doing is talking about the REALITY---- Keep it up!  That Doc could sure use a good dose of real life facts.
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Notgood; thanks for the clarification! I didnt mean any criticism of YOU!

The doctor sounds terribly frustrated
(also not the best communicator...)

Had your mother really not eaten in 4 days? Is she prone to exaggeration? Does she have cognitive issues?

I guess what I'm getting at is, perhaps your mom needs more/different (not better) care than she's getting at home. Can a cog eval be arranged?
You have an opportunity right now, if she's an admitted patient, to get her into rehab, gain some strength and see if placement would be a good move.
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Reply to BarbBrooklyn
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notgoodenough Nov 14, 2019
I didn't think you were being insulting at all, it was a valid question, especially when I looked back at my original post and saw I really didn't give very many details about the conversation.
My mom is not prone to exaggeration; in fact most of the issues here seem to be her under-exaggerating what's been going on with her, if that makes any sense. She's fully cognitive, she knows where she is, the date, what's going on with members of our family, etc.
The case manager came in today to discuss with her (and with me when I got up to the hospital) an exit plan for her down the road. My mom is willing to accept home care - which she had once before, after her first hospital stay in the spring. PT came to the house 3 times a week, gave her a regiment of exercises to follow, worked with her for about 30 minutes each time and then left, with the instructions to do the work on her own the other days. Well, she didn't do what she was supposed to, and she got worse and ended up in the hospital about 6 weeks later. That time, the hospital PT department told her she was too weak to be able to go home, and convinced her to enter a cardiac rehab center. She was there about 3 weeks and it made such an incredible difference. She made noises today that she doesn't want to go back there, but I think it's going to be non-negotiable. As weak as she is, I can't bring her back home. I'm semi-retired and work for a small business owner who needs me the next few months. Fortunately he's an incredibly understanding boss who is all about "family first", so in the event of an emergency it's not an issue to text him and tell him I can't make it in, but that's not fair to him, either. He only has about 12 people working for him at any given time and losing an employee, especially at some of the bigger jobs, is a strain. If she were to come home without intensive therapy to get her strength back, I would literally be a captive in my own home because I wouldn't be able to leave in case something happened to her. So even though it's not going to be her desire, she's going to have to head back into that facility once the hospital released her. If I have to get the social worker or patient advocacy involved I absolutely will.

You guys have given me some great ideas, and I appreciate it.
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Let her be and let her go. She's telling you "It's time."
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Reply to thepianist
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NGE, you dont have to read very long on this board before you see many sad tales of adult children who are captive in their homes due to their parents' medical conditions and or judgement about medical decisions.

Wishing you only good things!
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