Hospice on a ventilator.

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My mom has been on a vent since Dec 2015. Not her primary issue, she has been through 5 small strokes since 2011, had acute kidney failure but responded to 3 days of dialysis, has liver issues (scarring from meds and age), pulmonary edema, leaking valves in her heart causing fluid buildup, and has been in SNF (private Pay) since June until I can get trained and comfortable with care on the vent! Nevermind that I just lost my father and her husband this past June (married 69 years) and I am hesitating with hospice because I have been told it will only cover 100% if we agree to terminate the ventilator! I have to get her home and cut the 800 to 1100 a day cost of care. We are not rich... I have shelled out 65 thousand to date! I can hire a CNA for 24/7 support. Trying to find an LPN for a few hours a day.. Does anyone know of a medicare hospice agency on the east coast (Phila) who will offer support on a vent? I feel her other issues are all end of life! The vent was added late in the game..I have talked to VITAS, Compassus CARE, SEASONS, Holy Redeemer, and all say they don't do hospice on a vent! Flip side is some say it "depends". I am afraid of the "it depends" because I need to cut the expense second to the fact she is not with me as often . I will always feel a commitment to have her changed when she is wet whereas in facility she "waits"... I am so confused about what agency will do the best! I don't like talking to any of them because the vent is a red flag for hospice agencies it seems! Anyone in the Phila are who has knowledge or experience and is a good Samaritan willing to help me walk through this process HELP me PLEASE! I have coped with all the years of advocating for her through strokes , getting rehab continued etc... I feel like I have a negative opinion of the whole weaning process at the hospital and long term acute care hospital she went to in Jan... The skilled facility was a night mare for weaning! The 100 days of covered services was a total loss of time! I will say thumbs up for the care provided by the medical doctors, some nurses and a couple respiratory therapists and 1 or two CNA's but the rest of the time I watched them avoid care! The second and third shifts especially are distressing as they were always understaffed! I believe she will have more attention at home. Will need to face this with the advise of someone who has gone through this with a loved one and has experienced similar dynamic. Bringing her home after 9 months will be a blessing but a bit of an adjustment with the battle I face in finding stamina to live to fight another day with my spiritual loss of faith that I can ever rebound after witnessing how caregiving for both my dad and mom ended on the death of my dad in June! I truly have a bitterness creeping up in my soul that I didn't relax and put dad in the same facility as mom but I was so hopeful he would pull through on his own. I am really afraid of being mislead and personally have a guard up about what the medical field is training their interns and nurses sometimes. It seems they push the lowest baseline they can when the family and patient are working to overcome their health obstacles. I would like to add even my caregiving support groups have not been that safe... as some caregiver there cast dispersions my way by saying "who would take their loved one home on a vent". She was a nurse caring for her husband who has parkinson's disease! Felt offended by that outburst and even more so by the social worker who I really respect and she didn't acknowledge that comment. I called her recently and she said she didn't know how to respond but it bothered her for 2 months... Hard to trust anyone really gets it unless they have been through it. What makes my mother's home care less relevant than your? So secular society says it is the trend to disconnect a vent because the patient has not quality of life! From what it sounds neither does her husband... but that is not my concern just my perspective. Please... reach out ASAP.


I've been through hospice three times. There is no hospice with a vent. Nor will you have time to move her home. Once the vent is off, you kiss her goodbye. Sometimes this is better than watching them die at home. At home, you relive that moment every time you enter the room she died in.
If there are small children, even a four year old will be traumatized by the sight of death and the emotions of the mourners. You will see behavioral regressions in the child, bedwetting, outbursts or withdrawals.
For your own sanity, think it over, maybe it's better right where she is.
GraceofGod, my mother died a few weeks ago. My husband died a few years ago. It helped me to accept that each and every human life on this planet ends in death, and that timing and manner of my loved ones' deaths was not under my control. In spite of your care, you could not prevent your father's death. With or without the vent, your mother is going to die of one or more of her life-limiting conditions. I don't think this needs to be a source of bitterness or loss of faith.

Could you satisfy your desire for more personal care for your mother by spending more time with her where she is? Perhaps especially during the second and third shifts?

Since a ventilator is life-support and is (as you've discovered) not compatible with the hospice mission, have you explored what it would take to bring your mother home? You mention hiring CNAs and LPNs. You also mention financial concerns. Can you afford/does Mom have insurance that would cover this in-home cost? I think you might need to be trained as well. Have you looked at whether this is feasible?
Grace of God
Is there a reason why your mom is private pay and not on Medicaid ? Have you paid the $65,000 you mention or is this mom's money ?

Relying on hired help at home for 24/7 care is difficult especially when there is a last minute cancellation and agency can't staff
GraceofGod, certainly explore Medicaid asap! Goodness, unless you are quite wealthy, paying for your mom's medical care is going to leave you with no retirement funds.

Is it your mom's wish to be kept alive by any means necessary? Is there a medical reason she couldn't be weaned in 3 months in skilled nursing?

I suspect the nurse, caring for her husband with Parkinsons at the facility was asking a very preactical question...taking care of a patient with a vent is hard, nonstop work ( ive not done it myself, but have a friend who has). You might crash and burn in the attempt. Perhaps you need to look at the biģger picture of allowing mom to stay in long term care
(getting Medicaid, of course) and be her advocate and loving.
Loving visitor, that should be.
Hello and thank you all for your input. First, my heart breaks in the facility on 2nd shift alone! These facilities are always short staffed and so I get the "you have to wait your turn" attitude for custodial care or sometimes it just appears they have a routine that they rely on doing the minimum amount they can "get away with". My mom can have one on one at home! I stayed to 2 am this past Friday /Saturday morning because the AID was alone and she was rough doing care on my mother and when I offered to help because my mother's leg was "hanging over the bed" and she was red in the face, coughing like crazy... She snapped I don't need your help. I went to get the nurse and requested a supervisor. The nurse intervened and helped finish her care but then I was really afraid to trust after I left because I found out the same girl was covering the third shift as well. The nurse must of said something to the supervisor because he came in and tells me visiting hours are over at 8 pm. He was the weekend supervisor and I lost my patience! I told him no one ever said I needed to leave by 8 pm! That for what I pay for her room and board I will come and go as I deem necessary and that I would address it with administration on Monday. I went back Saturday afternoon and this "young man" doing care did not clean her properly! Her vent disconnected and he didn' t react until I said something. He tells me "that happens all the time!" Then he touches the trach tube without gloves to attach it! I really like to believe things will change but this is not a good compromise for my mother and myself! I would much rather take on the responsibility of paying someone in home and be part of the solution than be a chronic complainer and become " black balled" for speaking out! These places are all alike in this sense! The late shifts are "layed back"! Administration go home!
As for why she didn't wean in the first SNF it was because their vents were outdated and she couldn't tolerate it! I brought in a home ventilator service who set up a Trilogy 100 in the facility to train me to bring her home and she did much better! I was not there for the 3 months during the day when the respiratory therapists used to "just leave her on A/C" because my father was more in need of my presence as he was going through his crisis with his health! He unlike my mother was independent until March 28th 2016! The regret I feel is bubbling under my surface as I feel I really let him stay alone just to refuel my own spirit or to go check on my mother! I could have put him in the same place as her only I saw the care she got in terms of custodial and ventilator and put him in a place across the street that dealt only in rehab... no assisted living or SNF... It was close enough for me to go back and forth easily. Then in April he ended up in the hospital and that was a longer commute... and then to a long term acute care hospital which was a longer commute until he passed on June 16th. So the way it seemed to work with my mother and weaning on the vent... my impression was... if I was there during the day i would insist they try to wean her . I wasn't there during the day with my father at the hospital. My father and I were with her each day in Dec, Jan and Feb until march 1st. She was in the SNF from Feb until I moved her to a different SNF with a better ventilator in July!
My angst at a facility in Burlington County that was supposed to take her for a more aggressive weaning lead me on a wild goose chase about her insurance. That brought my trust down to realizing there are not so "good people" out there who are just going through the motions of "doing a job". She was accepted than her insurance was being challenged! So she went back to SNF where she is now... I needed time to train on the vent... I also felt the house needed a new air conditioner to bring her home in the summer so the time it took me to regroup from my dad's trauma, I felt unready to take her home in June or July. Now the weather is getting cooler and I am wanting to have some alone time with her without having to depend on "other people " to do the kind and compassionate things I would do! It is the "few bad apples that spoiled the trust" .
As for funds, I am using their savings and I have to spend down to reach Medicade! The point is that my mother is existing alone unless I am with her! I am not comfortable in my own skin there because it is like I have to "assert myself" to get them to do the right things! Each new aid does bring a new set of limitations ! I sound ungrateful when I want to be grateful I really do but it is irritating to witness the "wrongs"! They don't rinse her! They clean in the wrong direction. They don't re-position her every 2 hours..I am not satisfied with being so powerless. I took care of her at home for 4 years! It was a process of learning and doing! I wasn't perfect but I strive to improve.I love her !She would do it for me!
Grace, I have just spent the last 1/2 hour or so reading and rereading your 2 posts and responding, only to discover that almost all of my post somehow disappeared, as did the last post you made. Something strange is happening here.

I don't have the patience to start over again right now, but I would appreciate answers to some questions so that I can respond later.

1. Have you been advised by a pulmonary doctor that your mother cannot be vent weaned, and if so, what are the specific reasons? I see some "interaction" between her medical conditions, and also surmise that she's apparently bedridden. But what would be the specific reason vent weaning isn't possible, if that's the case?

2. I noticed that you mentioned a long term care hospital. I think it was in your second post, which suddenly disappeared. Was your father or mother in this hospital? If not your mother, have you discussed with your pulmonary doctor (not the SNF doctor) the possibility of placing your mother in one of these facilities?

My father was in long term care hospitals for vent weaning before he went to a SNF. It was a necessaity, absolute necessity, before a SNF could assume the responsibility of vent weaning.

3. Given that you're considering hospice, I'm inclined to think that you've been advised your mother's life is reaching a terminal stage. Is this correct, or were you thinking of hospice as an alternative to a SNF which apparently is not doing any vent weaning.

I think the first step is to determine what your mother's life stage is, and whether or not it's terminal. If not, then there are a lot of other factors that would come into play in taking her home.

I would ask also if you've been trained on suctioning.

More later, after the cyber gremlins stop stealing my post.

Something very strange is happening on this site right now. I've just read your second message and now it's completely disappeared. There were 6 posts; now there are 5.

Also, my apologies for that last paragraph and the beginning of another with merely the word "I".

I would also ask that you add some paragraphing into any responses. It's extremely difficult to read long paragraphs w/o any white space breaks and makes it harder for these old eyes.
Okay, now I see your post again. I'm wondering if the admins pulled it temporarily to edit it. That's been done before.

BTW, that's a beautiful dog. Is he/she yours?
Dear Grace of God: I've been a hospice nurse for a long time, and specialize in inpatient hospice care. Meaning, a specially designated full care inpatient hospice for complex end of life care and/or high intensity end of life care. Hospice is about providing comfort, dignity and great care and respect to patients who will probably die within 6 months. Hospices do not do anything to lengthen natural life or treat disease. But we also do not hasten death in any way. We bring comfort to patient and loved ones. We are experts in the science/medicine of hospice, as well as spiritual, psychological and social support. I urge you, dear one, to consider hospice care for your mother. My guess is she would qualify for inpatient level hospice. Ask your Mom to think about her quality of life and if she feels up to continuing this marathon of treatment and suffering. Then, dear heart, ask yourself the same question. It's ok to let go. You would NOT be killing her to let her die a natural death in her own time. I will pray for you and hope for peace and comfort for you both. K

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