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.
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.
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.
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!
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.
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.
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.
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.