Hospice on a ventilator.
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.