How to fight ER DR who wants Mom to go to nursing home, not back to memory care place she likes? CA

[Liberty Belle]

Nursing home before was worst nightmare ever - Mom had many serious falls, medication errors, thefts, and hated it there. She is 91 with dementia and had a broken back/sternum in Feb. that landed her in that hellhole which had a good reputation. She can't remember she can't walk without help (barely a few steps with a walker) and when she needs to pee or wants something else she tries to get up. When I filed complaints the place got Medicare to say she no longer needed skilled nursing and kicked her out. While waiting to find a new place they forced us to pay $30 an hour for a full-time bedside sitter, which I fear they would do again if we had to go back to one and nobody can afford that.

After nursing home mom went to a board and care, also terrible, then at a doctor's recommendation (we since fired that dr for over-medicating her), a memory care place that has been much better. Perfect? No, still occasional falls but they at least try to prevent them. She is happier there. She loves the food. They have activities daily and they were keeping her all day in the activity area/dining area so someone could watch her and she loved talking with staff and residents.

But on Friday, they got 3 COVID cases so put everyone in room lockdown. They had no plan to protect Mom. I warned them she would fall and get hurt and sure enough the first evening, she fell and complained her neck hurt so they sent her to the hospital. Even though i told the ER doc I'd hired a sitter service to sit in her room with her for at least the rest of this week and trying to find someone for the rest of the remaining lockdown days, this ER doc put in the discharge papers that she should not be released except to a nursing home. I signed her out against medical advice to get her back to the memory care place, since they said if she stayed longer (after a CT scan came back okay- no fractures) they would have to hook her up to an IV, do lots of blood work etc. Last time Mom was in hospital they brutally held her down for bloodwork every hour or two, she screamed and was terrified, and got hematomas the size of grapefruits on both arms. I said we're not going to torture her and got her out.

Now the memory place gave us an eviction notice and they say they have no choice due to the ER doc saying she needs a "higher level of care" at a nursing home! More like a more neglectful and abusive standard of care! I raised hell with the hospital patient liason but they refused to even tell me how to contact the doctor directly to try and get him to undo this terrible damage.

I fear Mom will die of neglect/abuse in a nursing home if we could even get one to take her (over a dozen facilities refused to take her in her last placement change due to being a severe fall risk).

The "answers" the county ombudsman proposed are worse than useless. "Take her home and hire help there." I have stairs all over, very dangerous, and I cannot lift Mom in a wheelchair up stairs even to get in the front door, plus the ground floor is my home office and I am often away for work appointments on an irregular schedule as a reporter/news editor. AT her old home, steps everywhere and we could not afford $30,000 a month for round the clock care; plus if a caregiver got sick Mom cannot be alone for even a minute - she is in diapers and wheelchair, helpless on her own. The only other solution was seek placement at places too far away for me or my disabled brother to visit. I have 5 bad disks in my neck and can't drive far. The stress already has given me a 5-day migraine.

What can be done? I am desperate for help. And the sad thing is much of this is the fault of a moronic new CA law that prohibits seatbelts in wheelchairs or rails on beds as "restraint." WE got a half rail thanks to a doctor who says she needs to grab it to help sit up, though she still gets around it on occasion. We have a six-inch pad next to the bed. But there is absolutely no way to prevent falls out of wheelchairs now, other than tucking her under a table to slow her down, and having someone keep a close eye on her.

I welcome medical and legal experts in CA to please weigh in and help us with this desperate situation. The system has failed us.

[canetoad]

1. I have no answers

But happy to kick for visibility. I hope you work things out, don't envy your predicament.

[Hoyt]

2. So sorry. Are there any geriatric specialists or physicians who handle elder care

situations? The ER physician might be right, but they probably haven’t spent much time with your mom.

See if the hospital or local agencies have social workers who might offer opinions.

Good luck and take care of yourself.

[alwaysinasnit]

3. San Francisco residents have a lot of resources for elder care, but I don't think your mom lives

there. But they might be able to refer you or give info.

https://www.sfhsa.org/services/access-empowerment/aging-and-disability-resource-centers

Also, maybe AARP might be able to give info or tips.

Good luck!

[applegrove]

4. I am so sorry. Call your political rep and get a exemption on the belt on a wheelchair.

That is what keeps my dad safe in Ontario.

[mackdaddy]

5. Try to get another Doctor to take over care.

I am certainly no expert, but from my experience with my 87 year old mother in an assisted care memory unit. The last doctor to care for someone is in charge.

I believe that once another doctor takes over care, the ER doctor is out of the picture once she is out of the ER.

If the new doctor says the memory unit care is sufficient you should be in a better position with them.
Do you have a GP that is in charge of your mother in the facility?

Good luck. I have seen wide array of quality of care in different facilities, and even big changes for the worse as facilities struggle with COVID and trying to keep staff now.

[Liberty Belle]

8. We've tried a couple of mobile doctor services that are pretty bad, but I will try to get one

to issue a different opinion. They are hard to even get to call back or show up....the whole system is atrocious. I have no way to transport Mom to see a doctor outside the facility and her old doctor refuses to see her since she went into the cycle of nursing homes, board and care and memory care facilities.

The facility itself does not have an on-call or onsite doctor.

Her long-time doctor, the only one who really cared, got out of general practice and into a specialty she doesn't need, so don't think he'd help though he DID assist us in getting her long-term care reinstated by attesting she had dementia years ago, before she cancelled a policy.

[sheshe2]

6. My heart goes out to you.

I do 24/7 home care for mom, she is 95. My situation is far different from yours, she doesn't have dementia, just old and dying. It is hard.

I understand how scared she was with everyone coming at her, my dad suffered dementia. He got scared too. I don't have any information to help you. I am so sorry, I know how hard this is.

Try to take care of yourself in all this, I know that is easier said than done.

Love and hugs to you.

[Liberty Belle]

10. I'm sorry for what you are going through. I cared for Mom at her own house before she hurt her back,

not full time but visited nearly every day, did all the shopping, errands, financials, etc. too. It's exhausting even when they are not in a care facility or dying.

[sheshe2]

12. Just try to look after yourself.

I have been doing this with my sister for three and a half years. COVID has made it all that more difficult for all of us.

Look after you. Trust me I know what you are going through, Liberty Belle.

[Caliman73]

7. Don't know if this will help, but you can call CANhR.

They may have some advice for you regarding how to approach the situation.

CANhR is the California Advocates for Nursing home Reform.

http://www.canhr.org/

[Liberty Belle]

9. Good idea - I'll follow up tomorrow.

[Hekate]

11. Liberty Belle, I am so damn sorry. All I can do is kick this so others can see it.

[pnwmom]

13. I'm so sorry you're having to go through all this. I know how scary and confusing it can be.

For your own sake, I think you would benefit from having a therapist or counselor to help you think through all this.

You had a terrible experience at a nursing home -- but they're not all terrible. And the ER doctor had good reasons for saying your mother needs to be in a nursing home (or around-the-clock care in a wheelchair-ready home): she's had a broken back/sternum, a fall that left her with a sore neck, multiple other falls, and is at "severe fall risk." Plus, you've said she has dementia, she can't be alone for even a minute, she's in diapers and in a wheelchair, "helpless on her own."

This is the picture of someone who needs the level of care provided in a nursing home. So maybe it would be best to focus your efforts on finding a good one. My mother was in an excellent, caring home in her last couple years, so I know they exist.

If your area happens to have any homes on the "Greenhouse Project," that's the kind of home my mother lived at. But I'm sure there are some others.

Best of luck in finding a good place for your mother. Of course you are completely stressed out. Please don't forget to take care of yourself, too!

https://thegreenhouseproject.org/

[Liberty Belle]

16. Greenouse has no homes in our county or anywhere nearby, though they sound good.

We need more of this.

I don't need or have time for counseling - I'm dealing with many very serious stresses besides Mom though her situation is the worst. What I need is practical help to solve the problems she is facing and get her into the safest possible place in our area, but also one where they are compassionate and have activities as she is a people person who gets depressed when ignored and left alone.

I am also dealing with major identity theft this week - thieves got my social security number and have been opening all kinds of accounts in my name. I have a long list of steps to take on that and am handling it. I also had a computer hack that might be related.

In the past 3 weeks I've also had two deaths that were devasting -- first my dog, very unexpectedly, the next day my best worker and good friend was killed in a car crash, and also within days, my long-time neighbor passed.

I head a nonprofit facing financial issues and manpower shortages, and have just three weeks to almost singlehandedly pull off our first major event in a year and a half due to COVID. On top of everything else, the nightmare of trying to find a place for mom in 4 weeks is the worst possible timing.

Oh, and the elder care attorney I reached out to blew me off tonight; emailing to say they're not interested. Time for a glass of wine and a hot bath, though I rather wish I had a punching bag.

[pnwmom]

17. You said "we" a few times. Do you have a sibling who's helping you through this?

You have way too much stress in your life now. Again, I'm so sorry.

[Backseat Driver]

14. Have you checked if a hospice and/or palliative care facility might be right for your mom?

The services are different though they may share a facility; their "ideology" of care may be different and nurses/aides might have a different patient load or work as a team when they know she may need scheduled bathroom seatings with a history of dementia, as well as attempts to ambulate with falls. Not sure of these places staff includes any "activity directors" but a range of assistance is also available for the families of the residents, counselors, social workers, medico-legal aid, etc...that help to lower family's stress levels as the patient's health status and needs change.

[Liberty Belle]

15. Doctors all say she's not within 6 months of end of life for hospice but also,

if you accept hospice they cancel physical therapy. She would make progress with physical therapy but it's a roller coaster because then medicare cuts it back, she gets worse, has another injury, and then they give you a little more PT, cycle starts over. All so cruel.

[pnwmom]

18. Physical therapy can be a part of hospice care, so I don't know why they would tell you that.

PTs develop a plan, utilizing treatment techniques to allow the patient to more freely move while reducing pain, restoring function, and preventing further disability.

Value of PT in Hospice

Physical therapy for patients receiving hospice care has these common goals:

Symptom control
Comfort control
Maximize remaining functional abilities
Provide caregiver education
Contribute to interdisciplinary team communication

https://pathwayshealth.org/hospice-topics/physical-therapy-and-hospice-care-how-it-can-help/

Also, doctors are poor at judging which patients will die within 6 months. With our relative, they finally put her on hospice, and she suddenly died a week later. Two thirds of patients spend less than a month on hospice, because doctors wait too long to decide they only have six months left.

I guess it's as hard for doctors as family members to "give up" on a patient.

Accurate prognoses matter because to gain in-home hospice services or admission to a hospice under Medicare and Medicaid rules, both the patient's and the hospice's doctor must agree that the patient won't survive six months. In actuality, about two-thirds of the roughly 1.2 million patients who enter hospices annually die within 30 days, according to the National Center for Health Statistics.

https://www.mcclatchydc.com/news/article24455983.html