A lot of you are familiar with the saga of my FIL. The TLDR story is that he is mostly immobile (almost 300 lbs and has been at that weight for as long as I have known him) and is losing ground, has had multiple falls in recent months, has multiple health issues (Semi-controlled diabetes with over-insulination, chronic kidney disease, neuropathy, hearing and vision loss, high cholesterol and blood pressure, incontinence, to name a few), is on at least 15 medications, and sees at least 10 doctors. He is on his second rehab visit since November (he fell, spent a week in the hospital bedridden, was transferred to rehab bedridden being moved via Hoyer lift, and then finally rallied, spent 2 months there and was discharged. He came home and was out 106 hours before falling again. Lather, rinse, repeat for the remaining days of his Medicare covered time).
So for those of you still with me. He is getting ready to be discharged in about a week. For reasons that I won't get into because they give me a headache, he is going home, against their recommendation of 24 hour care. He HAS my SIL/BIL living with him. But that is NOT what they are suggesting. Of course if we repeat this cycle - there is no rehab so we will have another situation all together if he can't maintain his bare minimum self-care this time. And to that end - the social worker at the facility is putting in a request for palliative care.
My only experience with palliative care has always been end of life, hospice mostly. While he has chronic illnesses, he has had all of them for YEARS. He is certainly in need of the help, I won't deny that. It would be a huge help to have assistance at home if they are willing to provide it. It would cut down on some doctors’ appts for example the way she described it. This just seems like another Band-Aid to avoid doing what really needs to be done, which is to place him in a skilled nursing facility. His home is already set up like a SNF with all of the DPE that he could ever possibly need. And more coming from the VA. Because the need for palliative care is to have another set of eyes on him. To check him medically, assess for health issues, and other things I'm not 100% clear on because I was not involved in the conversation. Supposedly the idea is to have one central group managing him to bring all of his doctors together so that we are not running around like chickens with our heads cut off trying to get him from place to place for no reason when it is already so difficult, manage his meds in one place instead of two, ensure that his medical issues are controlled.
She advised that he can be on palliative care for as long as necessary and that she thought it was covered by Medicare. And the research that I have done seems to confirm this. But I'd love to hear from others that have gone down this road. Everyone I have ever known that was in palliative care was already in their last 6 months of life and unless he surprises us. There are no indications that he is in any way in end of life.
From my own personal experience, palliative care will have a nurse come out to the home or facility once a month to check on patient, and that's it.
Most people stay under palliative care until they qualify for hospice care. And with hospice care all needed equipment, supplies and medications will be supplied and covered 100% under your FIL's Medicare. They will also send a nurse out once a week to start, and aides to bathe him at least twice a week, and you will have access to a chaplain, social worker, and volunteers.
To me personally, palliative care is a waste of time, unless all you really need is for a nurse to check on him once a month. Most people need more than that.
The social worker just brought this up today so our thoughts are all kind of scrambled on this. As long as he is still able to get himself up and on his feet - we can still take him out to doctors appointments. If he can't do that any longer we are at the point of no return anyway and we'll have to move him to a SNF whether he wants to or not, because no one has the ability to care for him at home (nor intends to ) and he does not have the money to hire full time caregivers to provide the care. I think he believes that we will figure it out at the 11th our and that we will all just stop working and take care of him.
As I told Alva in my response to her post - the man is delusional.
The secret to palliative is that you do need to know that it does recognize that there is not going to be a cure for many issues that will be ongoing to death, but that death is not expected to arrive in a certain time frame (six months). Palliative is simply a specialty. That means that the doctors practice within a sort of perview of the above. But they practice AS individuals and WITH individuals. Patients are as individual as their own thumb prints. Their need, diagnoses, prognoses vary like a thumb print. The palliative menu recognizes that and adjusts accordingly. So this is something to discuss with the palliative care physician as regards this particular patient.
Hospice is something else entirely. It is end of life. Unlike palliative there will be few treatments considered for much of anything that doesn't have directly to do with comfort.
You will get SOME information from NIH.Gov if you type in palliative versus hospice care.
But your best bet is for speaking with the MD (whomever is the POA for health care).
I am surprised that an attempt at in home care is being continued, but will say this. Y'all do know what to expect here as you have been living it. Only you will be able to say when you canNOT live it any longer.
My best out to you.
Heck, he was at this same facility for rehab after a surgery 9 years ago - before he was even losing his independence, before BIL/SIL even moved in - and he sat that the exact same conference table and slapped his hand so hard on the table that the phone rattled when the social worker had the audacity to suggest that it might be time to consider Assisted Living. He yelled at her telling her he was going home and that she needed to keep any other thoughts to herself.
He has heard some version of this suggestion more times that I can remember. He has been told by countless medical professionals that he should not be living at home without 24/7 support - and that the support that they are talking about is not BIL/SIL living there - but someone to help him out of bed and ensure that he is safely transferring, etc. But that narcissism is very strong. I know that most people that hear that statement fight it. But in his reality - HE is smarter than everyone. No one knows more than he does. If a doctor tells him that all of the tests were negative for something - they missed something - every single time. If a social worker thinks he needs 24/7 care - they are crazy because he can still drive and take care of himself completely (even though he is blind and can't hear and hasn't driven in 3 years and we've have hidden all of the keys and aren't taking him to renew his drivers license - no worries - he is never driving again!)
Truth - the man is delusional. And I don't know how delusions fit into competency. He can 100% live in this world when he needs to, and he is competent to participate in this world. But he is most certainly delusional in so many ways that it is scary. I just don't know how anyone that thinks like this can be considered to have full capacity when they live their lives in another reality all of the time. But I'm also not a medical professional. So that's just my thought process.
The attempt at home care is a bandaid - when clearly we have a huge sucking chest wound and we all know it. It is only going to end when EVERYONE is ready to let the bleeding stop. And that is going to require all parties to hit the point of no return. The problem is that not everyone is there yet unfortunately. All of the family is on the same page about the What, How Where and Why....we just need to get to the When.
It’s very apparent that he should be in a skilled nursing facility. I read what you said about “your sister in law knowing when it was time to place him.”
It’s so much easier for the patient and the family to place someone before it is an emergency situation.
We were told not to wait until the very last moment to place our mom in the hospice care home that she died in. By not waiting, I found that she had an easier time adjusting to different surroundings.
I am sorry that your family is going through this difficult situation.
Wishing you and your family peace.
Because I already know that this is going to be bad for everyone. Honestly - as morbid and awful as this sounds on every level - I'm not sure which would be more difficult. To have him pass away at home and have to deal with all of that - or to have to move him forcefully in an emergency situation. Because even when we are literally standing on the line in the sand - and we have zero options and emergent placement is all that is left - he will blame us. He will be too stubborn to see reason. He will maintain that we are dumping him there. And he will scream and yell and curse at both of them. And it will be awful.
So I'm just dreading the whole thing.
I appreciate the wishes!
Sometimes we struggle to keep our LOs away from care that would really be better (or MUCH BETTER) than care that we as a family can provide.
Your concern over “palliative care” is a sensitive reaction to the consideration that his many issues “might” be fatal sooner or later, but another consideration may now be quality of life.
Management of a 300 pound fall risk with numerous issues/doctors/treatments may be so difficult at this point at home, that NO partial and/or temporary measures will be able to do the job.
In SNF it’s possible that his care can be “umbrellaed” using a house doctor (ours was a geriatric specialist) which cut down the contacts and coordination with the Numerous specialists my LO had been seeing previously, and increased our confidence that the care being received became much more productive.
Overall, the terms “palliative” and “hospice” aren’t always death sentences, at all. The titles have certain implications in terms of coverage, but can be interpreted and executed with a certain amount of flexibility too.
With careful oversight from loving family, they can be sources of hope and success.
My LO was in hospice care for over a year, and following a long COVID infection, had really been in a situation that was palliative, although not designated as such at the time. If you can, try to focus mostly on what care can be arranged and not too much on the name that care is given.
He still has capacity - and as such the decision to return home is of course his first and foremost. The social worker told SIL today that she would "know when it is time" to move him to a SNF. It is beyond time. By a huge margin. We have moved the line so many times.
I said to him when we visited rehab this weekend that there is one line that won't move. He is coming home this time because he is able to get himself into the car and into the house on his own power. On his own feet. He is still able to get himself to the bathroom and back. That has always been SIL's line in the sand. No urinals, no bedside toilets, no catheters. I told him that coming home is against everyone's better judgment. That he is considered competent and as such he is allowed to make whatever stupid choices he wants - to a point. But when those choices become impossible to actually support we have a problem. And that point for us is if he can't get himself in the car or the house on his own power. We will not take him back into the house if he can't take himself back. I forced the issue with him until he said he knew that we would have no choice so that DH and SIL would know he knew - because when the time comes - he will scream and yell and say he never said that and that we are forcing him against his will and that he doesn't need to go. But we will literally have no choice.
I personally believe if he was not a narcissist - that he might be at least somewhat more rational about this. That he might be able to see the value in at least sitting down and talking about options even if he was not going somewhere at the moment. I know that no one WANTS this but I think the narcissism leads him to believe that he is in much better shape than he is. In it's own way - narcissism is like it's own form of dementia - it prevents him from seeing his reality. And it will be a very bad day when he does end up in a SNF because it will be a cold arrival directly from a hospital - with no option but to take the first available bed - at least initially - because he has been completely unwilling to even discuss it. But actions have consequences.
I think the social worker is recommending palliative care as a bridge maybe. I think they see the writing on the wall. Heck - it is bold red letters - only FIL is apparently unable to see it. He is so covered in bandaids at this point it is ridiculous. If the VA had not outfitted his home for it, it would be completely impossible. We have hospital beds and bars and chair lifts and elevators and so many accessories that we could set up our own SNF if he had the money to hire 24/7 help.
SNF is the gold standard. It is the goal. But we are in a situation where we would either have to have guardianship (which we cannot get) or he would have to be physically unable to return home to make that happen.
Hope this helps.
About 3 years ago we were told he was at end stage for both heart and kidney failure. There were no medical interventions that could really extend his life, however, the doctor did give him the option of the heart failure drug Milrinone, delivered 24 hours per day via a permanent picc (a type of IV) line to reduce his heart failure symptoms. Medicare covered the cost of a nurse coming out once per week to check the line as well as another nurse once per week to check his vital signs. He was only expected to live for another 3 to 6 months.
After 6 months, Dad was still in the same condition. His home health care agency discharged him and referred him to hospice (which they recommended), but also told him about the option of palliative care. In his case, hospice would have required withdrawal of the Milrinone (which can be considered life extending), but would have included typical hospice services for both he and my mother -- supportive care and alleviation of anxiety, pain medications, etc. But palliative care would ensure a continuation of weekly home health care and continuation of the Milrinone. Dad chose palliative care, fearful of his life ending very suddenly if he stopped the medication.
We were all grateful for the nurses who visited once per week to draw blood for lab work and to check his vital signs, however, Dad still had to travel to see multiple specialists throughout the month. He survived for more than a year after he switched to palliative care. During that time he fell multiple times, was in and out of the hospital, and his mental health deteriorated (as did my mother's).
I am ashamed to say that I did not attempt to intervene until that last few months of his life. I began calling every local aging and geriatric resource I could find searching for 24 hour care, either at home or in a facility. I learned it would not be covered by Medicare, and that the waiting list for places covered by Medicaid was so long he would likely die waiting for a place. There were so few home health workers available in our area that most places didn't answer their phones or bother to call us back.
In the end, Dad fell in the hospital and broke his arm. He was transferred to a rehab facility for two weeks, and discharged home with absolutely zero notice or home care plan. Within 24 hours he'd fallen again -- breaking the very same arm in a different location -- was taken to the ER where he was treated and sent directly back home. I blew up at the ER physician who refused to admit him only to be told none of the hospitals in Austin had available rooms, and that no nursing home would take Dad because (a) Dad refused to go to a nursing home, and (b) Dad was terminal -- there was no financial incentive for anyone to admit him.
We did manage to find an experienced home health care person who could come by and bathe Dad, but that was only in the last week of his life. The morning after she came by for the first time, Dad went into crisis, was transported back to the hospital by ambulance, and died (alone -- we planned to see him later in the day) the next morning.
All that to say that no matter which direction -- hospital vs palliative -- you choose, I strongly urge you to help find professional home health care to support your SIL/BIL and FIL. Additionally, work with whatever social worker the hospital can connect you with to get a home assessment and orders for the tools they will require for your FIL's mobility issues.
This can be a long, hard end. My heart goes out to all of you as you navigate this.
I honestly expect that it won't take long before we are back in this situation again. And we will be on a merry-go-round. I even said to him this weekend that we are currently on a merry-go-round but that there are only a few horses left. And when the last horse is gone- he won't be able to get back on. It won't matter how much he wants to come home, how loudly he yells, how much he threatens, that our hands will be tied. And that he has to understand that it isn't us making the choice. That because he is unwilling to even discuss options or consider the future, that he is taking the options away from us until such time as we have no choice unfortunately.
I think the social worker is recommending palliative care because she knows what is coming. And potentially because she doesn't have the entire story. Because they really don't know what he was capable of before all of this started. They only see how he came into their facility. And I realize that he is probably never going to be back to the point he was at when this all started. That is our new reality. But he doesn't. In fact - he thinks he is there. He is trying to make plans to go out to his favorite restaurant with friends and go shopping. Our big concern is to make sure we can even get him in the house!!
So I know - intellectually that we are on the down side of the hill. I think the rest of the family is still on the top anticipating the slope but hoping that we aren't there yet? When MIL passed away it was quick. And prior to that she was incredibly independent and private so this is their first time really dealing with something like this. My dad was sick for a very long time with a few things that were kind of like this- they slowed him down but didn't take him completely out, and then he got his terminal diagnosis and it was very quick after that. But he was always involved in making decisions. He wanted to make the decisions that made sense and impacted his quality of life and if they were not going to improve it, he didn't want anything to do with it. When he got his terminal diagnosis - the cure and the recovery was worse than the prognosis if he did nothing. He opted to do nothing. But he was always actively involved in those decisions.
So it is hard for me to wrap my head around just playing it by ear and seeing what happens and operating in fight or flight mode to make decisions in an emergency all the time. It is incredibly stressful. Because the abusive nature of their childhoods not only created this terrible "I say jump you say how high" dynamic between FIL and DH/SIL to this day...but it also left them with less than ideal coping mechanisms in emergencies. So the entire idea of doing this blindly with no plan at all just terrifies me.
And when words like palliative care start being thrown around- it makes me think that other people are seeing things that we are missing.