What do I do? Mom waits until things are at DEFCON 5 before she'll consider medical intervention.

Ask the doctor what he thinks you can do. If by law they can't force her to eat, either can you.

My dad also has congestive heart failure, likely stage four. He’s in and out of the hospital every couple of months when the fluid builds up to the unbearable point. He’s good about eating, but never drinks enough and often teeters on the edge of dehydration, made all the worse by the heavy doses of Lasix. We’ve done this dance for a long time now, it never gets easier.
I think the doctor was out of line, you don’t control your mom, much less her food intake. We all just do the best we can, but none of us can make another person, certainly not an elder who doesn’t feel well, do anything they are determined not to do. CHF is a long road, rest assured you’re doing great. Your mom’s outcome will be what it is, it all doesn’t rest on your shoulders

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".

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!

I have a relative who I fought for 2 years, trying to get her to go to AL. (She lives there now).

She was notorious about waiting for DEFCON 5 and it ALWAYS happened about 2-4 a.m. Always she would call family members at that time and shout something like "I need to go to the ER" and then hang up the phone.

Her mind - she didn't want to go to the hospital and risk being sent to rehab or SNF after the hospital stay. She pretty much has every comorbidity an elderly person can have, so she is usually in the hospital a week every time she goes.

Notgoodenough;

In what way did this doc "give you grief"?

Is s/he saying that it's your responsibility to make her eat in the hospital, or is s/he telling you that she's become malnourished over time because she's not eating at home?

Ot was s/he expressing frustration that shes not eating? And nothing to do with you in particular?

Cconversations like this can be useful if they lead to an investigation of WHY the patient isn't eating, like if they are having a swallowing problem. It's of no use at all if two people are simply talking past each other and making assumptions.

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.

My mom also had CHF; it never occurred to us that she had developed Vascular Dementia as a result; she was, in many ways "sharp as a tack", except she wasn't. Her judgement, her reasoning abilities and her accuracy about all sorts of important issues was frankly shot. Sometimes when you are close to a situation like this, you don't see the subtle changes. We certainly didn't.

I find that that's one one of the best features of this group; many of us have been down this road and want to help others NOT make some of the same mistakes we did.

Mom's regular doctor saw NOTHING wrong with her; we took her to a new geriatrics doc and it took him exactly ONE visit to refer her to a geriatric psychiatrist who referred her for a cognitive evaluation.

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.

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.

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.

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!

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!

Ask the doctor to order a dietary consult. New diuretic medication, and lack of food, fluids may have dropped her blood pressure which probably caused her to fall. She is weak, and dehydrated. I hope she did not get hurt. It seems to me she is not being managed well at home. She is not cooperative, and I think it is time for the professionals to get involved with her care. I think you should also include your family as well. Tough doing it all alone. Wishing your mother a speedy recovery.

notgoodenough....My MIL over a year ago was hospitalized and I stood with my husband outside the room while the doctors talked to her.
It wasn't HER fault she fell. It wasn't HER fault that she had horrible edema, it had to be her son's fault or anyone else's fault.

Fortunately, the doctors had already understood that she not only had CHF and had refused to go to the doctor when we'd asked, but her kidney failure was at a dangerous level.
The doctor[s] came out from the room and sat us down.
They were wonderful with MIL and with us.

Fire that doctor and ask for someone who specializes in elderly patients.

Hospital doctors rarely see their patients for more than 15 minutes. We were lucky that our small town had her regular geriatric doctors on staff.
She was pronounced incapacitated by 2 doctors and the next phase of care and help began.

And consider that your mom is in a place that is strange to her. That would upset her and perhaps confuse her a bit?

Let her be and let her go. She's telling you "It's time."

Please don't force her to eat. If her mind is clear, have you talked to her about her end of life wishes? Maybe she doesn't want to spend her last days going to doctors and hospital. Some people have end of life directives where they do not want to be fed if they cannot feed themselves. I know a doctor who said if he has dementia and gets sick not to treat him. These are difficult decisions for her and for the family, but you should talk to her and respect her wishes as much as possible.

If the mom is ready to let go of life, there needs to be an honest conversation about that and hospice services brought in to mitigate symptoms.

There have been sad cases in which adult children are criminally charged after their parent's death because they didn't get them care.

BarbBrooklyn is 100% on the mark. Call in Hospice. Not only will they help her, they will keep track of her medicines and call physicians themselves to have them adjusted.

HomeHealth and HomeHospice were such a Blessing for me when I was 24/7 Caregiving my DH during his last years. Call them today. Call them Now.

We used St. Lukes because our physician is affiliated with them. Find out who her physician would recommend and allow the physician to set it up for you.

Recognize that it is "easy" for a doctor to give you grief about her not eating. Doctors often believe in aggressive measures including feeding tubes. They think nothing of putting an old frail person through surgery to install a feeding tube. Perhaps that's the outcome he wants. After all, he can keep billing Medicare as long as she's alive. And yes, I've grown cynical about the motivations behind many medical interventions given what I saw happen to my MIL.

Take what a doctor says with a grain of salt. Your mother is not going to die from starvation. Getting the fluid out was the top priority and they can rehydrate her slowly. She probably didn't have much of an appetite.

BTW, doctors are the wrong ones to ask about whether or not your mother is eating; ask the nurse or the charge nurse.

If you have durable power of attorney for her medical decisions that only kicks in once she's no longer competent to make her own decisions and then it would be up to you to decide whether or not to place a feeding tube. FWIW, both of my inlaws specifically declined them in their living wills. They can be horrid things that get clogged and infected. And, if dementia sets in, your mother may even pull it out, which is what happened to my colleague's mother who pulled hers out in the middle of the night and the family awoke to what looked like a crime scene.

That your mother waits until DEFCON 5 before seeking medical attention is her choice. I think it's time you and your mother consult an elder law attorney and get her a living will and get you durable power of attorney both medical and financial if you don't already have it.

Focus on her quality of life, which is already not great with CHF but can be better if she watches her salt intake, watches her blood pressure, takes her meds, and controls her fluid intake and avoids sugar and sugary drinks because, like salt, sugar retains water. If she doesn't want to do those things, then there's little you can do to make her want to spend whatever time she has remaining out of hospitals.

You are not alone! This forum is filled with good people who have walked in your shoes. It's difficult to establish and maintain healthy boundaries with parents whose choices we disagree with but we must do the best we can to balance their choices with our own sanity and their safety. And, in my opinion, that starts by having an honest conversation about her wishes.

The next time she lands in the hospital, speak to the social worker and explain that this keeps happening and she cannot return home.

Explain to the doctors that you try to promote wellness for your mom, but that she has the mental acuity and right to refuse your care - and theirs.

Sit down with mom, and talk about your concerns. Decide together what is "healthy" for her - it will lean heavily in the direction of what she is willing to do. Talk about symptoms that require a doctor visit and an ER visit. Write down all the healthy choices she agrees to and keep it with paperwork about your mom's care. (You have a notebook/binder of all this stuff, right?) Make 2 copies of the symptoms you both agreed needs doctor care. Put one on her refrigerator or mirror or bedroom door. Put the other in with her medical "stuff". Maybe share all the info from your discussion with family members and close friends to help be advocates as well.

What makes you think she has all her "mental faculties?"

She apparently does not have all her mental faculties if she acting in this manner. She may be dehydrated, which is deemed a medical emergency in the long run. Tell her physician your concerns again.