How do you know when someone has truly given up?

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J

JL0904 Asked July 2022

How do you know when someone has truly given up?

I posted another question previously about an aunt in-law’s situation & really whether she’s passing soon. Doctors don’t give answers to jack anymore. How do you really gauge the time someone has left & how do you know if they’ve just given up fighting to survive? She’s all over the place. She is obsessed with her death the funeral, making sure people get specific things, etc. & states she’s tired of fighting. She doesn’t want to fool with it anymore. Then on the flip side, she doesn’t want to die and is in total denial/outright lies about her conditions & symptoms. She would rather lay & suffer, really suffer, than say she’s in pain or she’s smothering. She’s convinced if she doesn’t discuss it, everything will disappear. This can literally be fatal with all her conditions that are getting worse every day. My gut has me prepared for a huge medical crisis, cardiac arrest, or kidney failure. But I really don’t want her to suffer at all. My wish for her is to slip away peacefully- no pain, no smothering, no fear. Unfortunately, it doesn’t appear like that’s going to happen. She’s also indecisive about life saving measures. One minute she’s got an advance directive to include all measures unless there’s no hope. Then she revoked & was DNR. Then, in the same conversation, she said if she stops breathing no CPR but if her heart stops, she wants to be shocked back if possible. Her cognitive functions have seriously declined (along with so much else) in the last 4 wks. So, I don’t know what to follow! They still classify her of “sound mind” to make decisions even though she doesn’t grasp any of it or refuses to address it or even do what she’s told. The impending crisis right now is the high possibility of sepsis (she’s prone to jumping straight to septic shock) from drug resistant bacteria in her kidneys & the dangerously low (& gradual falling) BP. Her last 2 visiting nurses had difficulty even hearing her heartbeat & her pulse ranges from 62 to 46. Yesterday her top BP # started dropping as well when it had previously been sort of steady at 102-106. Is it bad that I wish for a quick death for her instead of dragging it out? I don’t even care about the toll this takes on me to watch. I have learned to sort of disconnect at the end of each day. Otherwise, I wouldn’t be able to even sleep. And maybe there’s no way to gauge real time left, but the constant wondering for all of us has is on pins & needles. Despite no doctor giving me any real answers, the way they provide care for her at every hospital visit tells it. They don’t treat to heal; they treat for comfort. Here’s the process every time she goes in through ER: ambulance comes, drivers are awful-usually-starting when they see her size & realize she’s completely bedbound. Get her to ER, immediately given morphine knowing she already struggles staying awake. She sits in ER for a day or two until a room is available in cardiac wing. In that period, they have issues drawing blood (her veins usually blow right off) & discuss a picc line until they realize with her heart issues it’s dangerous. She finally gets in a room & on day 3 they give her a bed bath, change her gown etc. they run minimal tests - usually just to measure toxins in urine & do a culture to check bacteria. Sometimes they’ll image her lungs to measure the fluid pockets she’s had for over a month. They’ll deal with her BP as best as they can. Then she’s discharged to come home a couple weeks (record is 1 month so far) before something else sends her back.

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score 1 · Answer 1

My mother was on Lasix, and about three weeks before died we decided to take her off most of her meds, including the Lasix.

Go figure -- she lost all that water AFTER being taken off the diuretic. She died with slim ankles -- something she thought she'd never have again.

I think folks get so many meds that everything just builds up inside them and their bodies don't know what to do with them.

Perhaps if hospice could be framed as home health care (thus removing the need for ER trips), plus the removal of some of those meds, your aunt might actually feel bettes before the end that's coming anyway. The hospice folks can give her anti-anxiety meds and morphine for pain, but clearing out some of those other meds from her system might actually make her feel better.

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We had the hospice discussion earlier today. She’s agreed to hospice care. Her PCP had to call her & tell her there was no cure for her conditions & there’s no more treatments to try.

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score 2 · Answer 2

I haven't read all the responses yet but I have never heard of insurance approval for someone who is on Medicare. The doctor writes the order and sends it to the Hospice of ur choice. In my experience they are out within 24 hrs. They evaluate the situation and then admit if they also feel Hospice is needed. Medicare foots the bill completely. Hospice bills Medicare for everything. Actually, I know of instances where Hospice was called by a family member than Hospice got an order from the doctor.

Your Aunt will be so much better with Hospice care. They will give her meds to relieve her anxiety, pain and ability to breath. She will be kept comfortable. Her skin breaking down means she is dying. She may not be able to swallow or take in food and water towards the end.

So sorry you are going thru this. If it was me, I would not be caring for her.

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To get everything paid it all has to be preauthorized by her Medicare provider. It’s ridiculous. If she goes to hospital she has to be admitted 36 hrs or has to pay for all of it plus whole ambulance cost. Otherwise it’s just whatever hospital copays & $288 ambulance copay. She’s completely bedbound & her insurance doesn’t pay for non-ambulatory transport. I tried to get her into her insurance’s palliative care program but they denied her stating she could get around to doctors. It’s the most idiotic thing I’ve ever heard.

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score 0 · Answer 3

JL, my dad was morbidly obese for decades. Fortunately, he remained mobile and never topped over 375# but, he would retain tons of water in his torso, making it hard for him to breathe. This was a challenge because you couldn't really see how much water weight he had. When I took over his care, he had more then 70# and was actively dying. He too, thought ignoring it meant it wasn't real and he was fine. He had CHF, Stage 4 kidney disease, A-fib, erratic BP and other issues.

I dealt with a hospitalist deciding he wasn't worth treating. Nope, not on my watch, I raised the roof in the hospital about the lack of care. This did get him treated and gave him 3.5 more years of life. It is really unfortunate that anyone would have to fight so hard for doctors to do what they are trained and paid to do. Very common with hospitalist, they seem to be the doctors, I use that term loosely, that can't be in private practice because they are incompetent hacks.

He wasn't ready to die when I started helping him. However, when his time was getting near, last 6 months, he started talking about end of life, which he NEVER did, EVER.

So, I would definitely be prepared for her dying. Nobody really knows how long.

A couple of things, hospice shouldn't be a problem with her insurance. I would contact different providers and interview them and ask what needs to be done to get her set up. They should provide her a proper bed.

I wouldn't worry about her having a BM daily. This is directly associated with what she eats. Lots of high fiber foods produce more, lots of protein and no or minimal fiber, not so much. An apple a day can truly help. But, with her body shutting down, all of our normal functions change. My sister went every 3 days in the end and only because she drank smooth move tea. She just wasn't consuming enough food and her system was slowed way down as it was shutting down.

I don't know if you Auntie has given up or if she just knows that her time is coming to an end. I don't think my dad ever gave up, he just knew that he was dying and finally came to terms with that.

Please fight for hospice immediately. They will help her not suffer and they will help you too.

She is very blessed to have you as her advocate and caregiver to love her through this final season of her life.

May God bless you all!

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score 0 · Answer 4

It sounds to me that your Aunt is afraid to die, and doesn't want the peace that death can bring. From all your indications she is miserable and in the midst of a lot of torment and pain, but is afraid to die. I believe in your other note you indicated she doesn't want Hospice. That is your signal she isn't ready to die. And INTERVIEW with hospice, if doctor would order one in consult, may help her; it may not. I think she will want what measures can be supplied to her, but eventually she will be unable to make decisions; at that point the doctors will help the Medical Power of Attorney decide, and in some cases the MDs will be honest enough to say that nothing more can be done medically. That time seems to be rapidly approaching and MRSA indicates that soon antibiotics, the few remaining that can help fight, won't work, either.
If your Aunt wishes to keep fighting for life that is her right.
As to answers from the doctors, your aunt has probably already survived things they would have BET she could not. Medical personnel quickly learn that their best guesses about life and death are only guesses. Why give YOU their best educated guess when they will likely be proven wrong by Aunt's determination to live another day?
No one can predict death. You will know your LO has given up when they tell you calmly and without fear that they are tired, and want the peace of death, when they ask for the "good medicines" and when they request hospice and no more treatment, but to be kept out of pain. Talk with Aunt and be open to her. When she is done the words will be gentle and without angst and struggle. They will be a plea for final rest. The back and forth fighting will be done. There will be a sense of inner peace. I don't think Aunt will get there if she is not there now. Most would have long ago lost their stomach for this struggle.
I am so sorry for all you are BOTH going through.

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it isn’t that she doesn’t want hospice more so that she doesn’t want to admit all these things are wrong with her & she needs hospice. She’s in a constant state of denial. She is still convinced she can get out of the bed & walk but she’s been told several times she can’t. Her leg has not healed any in a year & her kneecap is almost gone. And she’s lost 58% bone density total. Her “good leg” isn’t strong enough to handle all her weight. She refuses to admit she’s visibly gasping for air or that there’s issues with her BP or that she can’t pee. To her, if she doesn’t admit it, it’ll disappear. Her speech is slurred. She can’t stay awake for longer than 30 mins. Her skin is tearing all over. She just tried to drag her butt around on her bed & ripped 3 places so now I’m waiting on her PCP to call for a PRN visit. She’s refusing to let me take her BP; I was instructed yesterday to take it 3 times a day to monitor that bottom number & her pulse. Since hospice hasn’t been approved by her insurance yet we’re having to rely on her limited visits from post-hospital follow up. Although her PCP has officially put her in terminal status (as of this morning after yesterday’s nurse visit), she will still have to go to the hospital over the lack of urine & falling BP/pulse. She is not in DNR status yet. Even in her constant confused state & rare moments of clarity she insists she’s done fighting she just wants to “hurry & die”. She’s said she’s not afraid to die but her symptoms scare her greatly. So she acknowledges that there are things going on but no specifics. Her PCP had a lengthy call with me today & I’ve gotten more answers than ever. He can’t definitely give me how much time she has left but he did say it likely won’t be in the weeks category. It will be a toss up between her heart giving out or her kidneys. She’s had a CHF diagnosis since 2014 & it was pretty bad then. He said she’s already lived beyond what he would’ve thought especially when kidney issues started. She hasn’t eaten much. I had to beg her to eat a piece of toast when she took her meds so it wouldn’t hurt her belly. She drinks water pretty heavy because she’s always so thirsty but still minimal urine output. It’s likely she’ll be back in the hospital by the weekend or sooner. 1 more below 60 reading & she has to go.

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score 0 · Answer 5

Wellll----as a niece-in-law--you probably don't have a lot of say in the matter. You are her primary CG? How do you handle the day to day care of someone who weighs 500+ lbs?? That is likely what is making her health issues so much worse.

She is probably EOL and requires that kind of care, which I don't know if one person is capable of doing with someone so large. At that weight, everything is strained to the breaking point.

One of the reasons the nurses couldn't find a pulse is simply that she has too much fat padding her body and it's hard to catch a pulse through the fat. (Sorry, that sounds so judgy, and I don't mean to be!)

She doesn't have months and months to live. Probably weeks, but then, nobody ever really knows.

If she can have a psych eval then you might be able to have a better idea of how her mental status is. Hospice comes to mind in her case. It would ease her pain and keep her calm. That alone is worth it! Then you let nature takes its course.

Grandma1954 is right, once on Hospice, then you don't have the constant ER runs. All her care can be done at home. It's far more peaceful that the drama of a hospital setting, where, honestly, they can't do much to help her.

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Before she broke her femur last August, she was 356 lbs. she’s been bed bound ever since. She has advanced osteoporosis; the break hasn’t healed at all & all but 1/8 inch of her kneecap is gone. She was told she will not ever be able to even transfer out of bed. The difficulty hearing her heart has just recently started. She’s had a psych eval & significant cognitive decline between 2 visits was noted. Home hospice is in the works. As of this morning, her PCP has moved her to terminal status. So now we’re just waiting for insurance approval. In the meantime, he is taking measures to do as much as he can to try & reduce her suffering. I’ve gotten more info from him in the last 24 hrs than I have from hospital doctors in 4 months. Right now, it’s a toss up between cardiac arrest & complete kidney shut down as to what she succumbs to. It just hurts to watch her go through so much.

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score 0 · Answer 6

Has anyone discussed Hospice with her, with you or the rest of the family?
The primary goal of Hospice is comfort. she does not have to sign a POLST (more detailed than a DNR. It may go by another name in some areas) and if she does it can be revoked if she changes her mind.
But there will be no more hospital trips unless Hospice thinks it is warranted.
A Nurse will come and see her every week, more often if needed. A CNA will come and help her at least 2 times a week and the CNA will order supplies if needed. And a Social Worker will be assigned. AND a Chaplain will also be assigned. This would be a great person to talk to if she has questions/doubts about what to do.
Maybe helping her preplan her funeral is a good idea.
If she has no Will helping her do one or write down her wishes is another task you can help her with.

I think in a way we are all like your aunt in law. We know we are dying...everybody dies. But no one wants to. Then again if you are ill and just plain tired of fighting you want it to be over. I get it.

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Hospice as been discussed but her refusal to admit she even has any health issues at all makes her state she doesn’t need it. But she does. Her PCP, as well as many others, have told her. She’s been obsessed with her final arrangements over the last 4 weeks (since her rapid decline started) to the point where she wakes me up at 3 or 4 am just to state things previously stated. She has a will - again recently done. And there is a POA in place. Her PCP has deemed her terminal & is working on getting home hospice approved by her insurance. Everything is just hitting at once & I’m more bothered by watching her suffer instead of admitting what’s going on. She can’t breathe well - although removal of fluid isn’t an option. It’s in multiple pockets & her size & weakness makes removal nearly impossible. She’s cold all the time even when visibly sweating. Her cognitive functions have really declined. Her body is still retaining fluid despite the lasix. And her small amt of urine is increasing in darkness. The failed clean catch yesterday bothered her PCP tremendously but states right now it’s a toss up btwn complete kidney shut down & cardiac arrest. He said he can’t say definitely how much time she’s got but if she hits the “weeks” group that’s longer than he suspects. She’s really not so much afraid to die - she’s said she’s ready she’s tired of fighting. It’s more she’s afraid from what she’s going through if that makes sense. I guess she expected to just go peacefully or suddenly like her husband did in September. And right now that’s not what’s happening. She can’t stay awake for more than 30 min spans. And that was before the dropping BP & pulse. Yesterday the nurse had such a hard time getting the catheter in because she’s so swollen & then not a drop of urine. Couldn’t get a blood sample because her veins are collapsing like crazy. So really we have no way to know if she’s septic beyond the visible symptoms. I’m prepared for her passing as much as anyone can be but the suffering is what’s really getting to me. I really wish someone would just give her something that keeps her sedated & reduces her anxiety but ik that’s not ideal either. We have to get through her post-hospital nurse visits before hospice care can begin. And her PCP has said we should just refer to it as home healthcare or home visits. He said it’s likely her clonapin & Prozac will either be decreased or stopped as will her BP meds. She’ll be given a stronger pain med which she needs anyway cuz she’s in a lot of pain & tramadol isn’t helping her at all. She is adamant even in her lucid moments that she’s tired & doesn’t want to fight anymore.

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score 1 · Answer 7

Your in-law has a lot wrong with her and most probably caused by her weight. Really 512lbs? How do u care for her.

Sounds to me she has congestive heart failure and her kidneys are going. Not much doctors can do for her. She probably is not a candidate for a transplant. Water retention is caused by the CHF and throw in her kidneys are not doing their job, so she is bound to have water retention problems. Also, if she is in need of dialysis and can't get it, her kidneys are not cleaning out the toxins and that is causing her to be septic. These toxins will effect her cognitive functions and she will have dementia type symptoms and IMO cannot make informed decisions.

Are u her Medical POA or on her Hippa paperwork so you can talk to her doctors. I don't know why they cannot give you an answer about if she is dying. Maybe not this minute, but her illnesses will cause her death.

I suggest you request the doctor to write an order for Hospice. They will come in and make her comfortable. You will also get some help with an aide. Medications and things like Depends you will get for free. Morphine is used to ease breathing problems. A DNR will be needed. Hospice takes no measures to keep someone alive. Thats the purpose, to give a person a peaceful passing. I think you in-law needs to except her dying at some point. She just has tok much wrong with her and something is eventually going to give out, heart or kidneys. Be aware that once Hospice is called in, no extreme measures will be taken. She will no longer go to the hospital to have liquid drained off. Her sepsis will kill her if they can't get it under control. I would get Hospice in.

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Her weight definitely poses a struggle. I’m 125-ish pounds & her increased weakness or lack of desire to help anymore requires me to use my entire body just to roll her for cleaning. But I somehow manage. Until her skin started coming off in chunks so easy, she had no bed sores, no raw skin. I’m on all her HIPAA forms in various locations. Her PCP has been more forthcoming than any of them. After yesterday’s nurse visit & failing to get a clean urine catch, combined with dropping BP & pulse he did tell me he’s now put her in terminal status & is pushing harder for her insurance to approve home hospice care. Right now, we’re getting 2x a wk nurse visits as post-hospital follow ups. She can’t breathe well she says she feels like she’s smothering. But that fluid can’t be safely drained; her size & weakness combined with the fact it’s scattered in pockets. She’s on diuretic but it’s no longer working sufficiently. She’s started swelling in her female parts & hands again. Her veins collapse preventing any blood drawn to monitor for sepsis & a picc line has been ruled too dangerous. Her speech is slurred, she can’t stay awake longer than 30 mins, & today shes started something new: when she wakes back up she says Am I dead yet? Then after she realizes not she says Crap I’m still stuck here. She’s almost overdosed on clonapin tramadol & metoprolol so I’ve taken away her access to her meds & dispense them. She calls random people on the phone - just dials numbers. & tries to have incoherent conversations. She called someone yesterday from her husband’s Masonic temple which resulted in a visit from the police. Evidently she told this person she was here alone & hadn’t eaten in 4 days. I’m here 24/7. I don’t go to the store I don’t leave the property. I go outside when she’s asleep for a few minutes of sunlight & to decompress. She is at the point where she doesn’t even have the strength to pick up her cup or operate the tv remote.

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How do you know when someone has truly given up?

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