Good morning,
A brief re-cap; my mother has a very, large aggressive tumor covering the entire frontal line of her brain. This was found when she fell Monday.
Surgery, which is the only way to remove it, would be the brutal way to go and the neurosurgeon says he would not feel good about it in her case. I agree completely. (She is still confused and even after hearing everything laid out she responded, “Then it’s a go.” She still doesn’t have decision making capacity.
As surgery is not an option, now they are saying she can go home. The social worker said she doesn’t qualify for short term rehab because she is walking okay. We’re in NYS, and she has Humana Medicare.
So they’re going to send her home with home care today.
The dilemma is, they think she has 24/7 support at home, but although I can take PTO from my job, eventually I have to go back to work or they run out. FMLA is unpaid so I will go broke at this rate. My siblings are not in a position where they can live-in, although they can be there frequently off and on.
I want to dispute the discharge today. I realize that only gives a short window of time while the company reviews the clinicals, and in just about every case they side with the hospital, but I need more time to decide what to do.
Should I ask that they try to send referrals anyway? Based on her confusion and risk of falling she may qualify (?).
I may be looking at bringing her back to the house in a couple of weeks, but setting up 24/7 private care in the home, which I know is ridiculously expensive, but she had specific instructions in her living will/HCP to do so. (I am also her POA).
This is a real mess. : (
You should have made them aware at the very beginning what your moms and your circumstances were so they could have started planning her care plan then.
So tell them TODAY that your mom is an "unsafe discharge" and CANNOT return to her home as you have to go back to work and she has no one to look after her.
They will then have to find the appropriate facility to place your mom in, and at that point I would just leave well enough alone and leave her there as you really don't want to have to take on her care while trying to work, as it will be just to much as your mom will only continue to decline.
She is agreeing to rehab now, but for “a few days.”
The "magic term" to use would be "to discharge her to home would be unsafe"
If mom is going on Hospice you can work with the Hospital Social Worker, the Hospice Social Worker and the discharge planner to find a place where she will be safe and cared for.
If you or a sibling can help care for her in your home with the help of Hospice, and paid caregivers that would be an option. If mom does not need 24/7 caregivers at this point that would be a savings. But as moms needs increase so would the need for full time caregivers. (by the way mom pays for the caregivers not you or siblings)
Hospice would have a Nurse come in at least 1 time a week. A CNA would come at least 2 times a week. The Nurse would order any and all medical supplies, medications and equipment that you would need. The CNA would order any personal supplies briefs, absorbent pads, creams, lotions, soaps, gloves, wipes. You would also have a Social Worker, Chaplain assigned and you would have the option to request a Volunteer that could come and visit or if there are things that need to be done a volunteer could do that. (anything from laundry, light housekeeping, yardwork... they just can not do "hands on care")
Filing a dispute immediately stopped the hospital's elder-dumping "discharge" merry-go-round, ensured the hospital honored their legally bound responsibilities to patients, and gave us time to sort through options, including contingency plans and legal advice around elder care.
It sounds to me like you have a sympathetic Dr in your corner whose diagnosis and prognosis would support your dispute. Nothing to lose by filing a dispute.
Regarding the hospital assumption of 24/7 home care, you may need to be regularly challenging them until things are fully sorted. I had to challenge hospital discharge planners on a daily basis about their continuously reverting my husband's discharge transport as my responsibility when he was clearly still bed-bound. I told them to try having him walk 20 feet to check his oxygen level, and they had to do so, and admitted he required more time in hospital, and only gurney transport for discharge. Frequent staff shift-changes allowed this nonsense to persist throughout his stay, though, so you may need to remain constantly vigilant and willing to challenge their assumptions, assertions, and mistakes.
It is well worth it for your own, and your mom's, long term sakes. She is lucky to have you sorting through all of this on her behalf. It can be such an unexpected event that causes so much chaos that we need to keep going back to re-set, untangle, and sort things out. But it is so worth it, and ultimately can give some breathing space needed to reduce the amount of tumult.
Hope you'll keep us updated.
Tell them it would be an "unsafe discharge" (those exact words) and that you would report such a discharge to JCAHO (Joint Commission on Accreditation of HOspitals) and that they could conceivably get a huge ding on their license. Tell them it is clear your mom cannot function for herself at home and that there is no one to help her there 24/7. Tell them your mom needs placement in care. Whether she goes temporarily to SNF or whatever is a moot point. SHE CANNOT GO HOME NOW.
Hospitals will not allow people to remain in acute care when it isn't needed and it isn't.
They will not keep her. You now need to get her safely placed in care ASAP and with Hospice on board as well.
Social workers right away. Meanwhile you use
1. Unsafe discharge
2. Will report emergently to JCAHO the discharge of a disabled senior to a home where there is no care for her, and that should she sustain injury there will be a lawsuit.
Meanwhile I am very relieved that no one is considering any surgery here. Hospice needs to be on board now and imho this needs to be in facility hospice if you can find any that still exist in your area.
In ur first post, you mention Mom is 82 and you are 53. Mom being 82 may be one reason why the Drs do not want to operate. You being 53 means u cannot afford to quit a job.
I would not set up 24/7 care for Mom. Its expensive, your dealing with aides that may not show up because of personal problems. And aides are not medically trained. I feel that with an agressive tumor Mom needs to be where there are nurses around the clock. I would place her in a nice LTC with Hospice. All her needs will be met. You just visit and enjoy the time u have together. Use her money for her care and when she runs out, apply for Medicaid. Sign up for family leave. You may be required to use all PTzo and vacation time before family leave kicks in. You can take it in increments. Having it in place will protect your job.
There are also slightly longer term Hospice patients in some Care facilities.
She seems most bent, however, on the Home Care ,and Hospice also assists over loved ones choosing to die at Home -which I'm sure you are aware.
In some areas of our Country , many families opt for Home Care . They make adaptations over reconstructing their homes and often are the primary caretakers. Eventually they allow for the loved one to also die at Home, with assistance from Hospice. None of our own parents ever ended up in a Care Facility -which was their wish , but then none also lived past age 85. Meanwhile -some accommodations were made for them as they aged or even grew ill.
In other areas of the Country, Care Facilities can be Big Business, practically one on every block . That can lead to an influence on a Community's residents as to accepting -that's How it's Done and the major decision is choosing Which One?
(Also If they can afford it .)
Even having spoken with Lawyers and Accountants , etc, they often exhibit a Human Side to themselves as well. They often ask-"Well -what do your Loved ones Want ?" A good Lawyer/ Accountant can work with you -in an effort towards granting them their wish., if that's important to you.
At least she left a Living Will with instructions., so you can avoid too much confusion. You may want to try to Honor that , as much as You would want loved ones to Honor Your wishes.
Best over it!
Attending MD just called and they now say they also feel she needs rehab. She isn’t going anywhere this weekend and the case manager will follow up on referrals on Monday.
My mother is agreeing with rehab as well.
I feel like a gigantic weight has been lifted off my shoulders.
I will continue to take things one step at a time.
Thank you all, from the bottom of my heart ❤️…
Not to muddy the waters, but if she does not have a trust set up, now is the time to learn more about avoiding the pitfalls of probate, Medicaid, etc. Each state is different, even for Medicaid (ex: CA can easily shelter home and some incomes on their MediCal program) so using this site's list of elder care lawyers might be helpful for info specific to you and your area on both care options and maximizing asset shelters, if needed. I personally would not trust that entirely to medical personnel or chat posts, even here - too many circumstances require experts at state laws. The experienced folks here are a very helpful sounding board and have helpful pointers to suggest best paths forward, and you can find elder law lawyer on this site's listings (I did, and wow, talk about weight lifted off shoulders - well worth the cost!). If money is tight, local government can inform on low/no cost legal help, too.
Just give it time, even if more challenges come your way, you got this. You've done great, and deserve some well earned sleep and rest this weekend!