I live in Nevada and originally had my mom living with me in my home during the pandemic. She had a stroke 10 years ago, is unable to walk, unable to transfer herself, is incontinent, and has diabetes that requires insulin. I wanted to get her into some sort of care facility so she could have caregivers with her at all times because she would occasionally fall while transferring or get low blood sugar. She was also alone most of the day once my partner and I went back to work.
I spoke with everyone possible: her doctor, the state, and various facilities about our options, especially because she would need Medicaid. It seemed that with her on insulin, group homes wouldn't accept her unless she switched to oral medication. If she stayed on the insulin, she would need a skilled nursing facility to care for her. The Medicaid applications for group home and skilled nursing are different, and I was under the impression that a doctor/hospital had to do the one for skilled nursing. Her primary care doctor suggested dropping her off at the ER at a time when she was medically fine during the pandemic to be able to get into a skilled nursing facility. I held off on that, because...pandemic. So we went the group home route and tried the oral medications.
The oral diabetes medication they put her on (metformin) did not agree with her at all. It basically wrecked her gut--constant diarrhea and vomiting led to severe dehydration and malnourishment which led to a hospital stay. She recovered back to her baseline normal after about 3 weeks in the hospital and 3 weeks in skilled nursing rehab, all while being back on her insulin.
They then discharged her back to her same group home, after I raised concerns about the diabetes medication causing problems for her. They put her back on the metformin and suggested hospice care when she got back to the group home. I thought that was incredibly strange because she was at her baseline normal (mentally coherent with very mild forgetfulness, physically limited but able to sit in her wheelchair and wheel around the house).
Within two weeks she had RAPIDLY declined. The metformin caused the severe GI issues again, leading to the same dehydration/malnourishment problem that she had the first time around. Hospice was trying to convince me that it was her "natural decline." They informed me she had severe pain in her hips and started giving her strong pain meds. I said I didn't want her on strong pain meds all the time and only as needed. They ended up giving them 3x a day, every day. I let this go on for about a week and then stopped hospice and took her to the ER because none of this seemed normal.
In the ER they discovered the source of her hip pain was a bed sore that had become infected because the group home was not repositioning her regularly. She also had a severe UTI and bladder infection from a catheter that hadn't been changed in a very long time. She also developed a blood infection. They put her on antibiotics for the infections, but her appetite hasn't fully recovered. She is still very weak and is experiencing delirium. The doctor says that this is her natural state and that she's declining naturally, referencing that she can't use her legs as evidence (she hasn't been able to use her legs in over 4 years btw).
Now they want to discharge her back to the group home. I'm upset because the group home was NOT caring for all of her medical needs. The Medicaid application we have pending is for home-community-based care, not long-term nursing home care. I believe that she needs that nursing home level of care at this point and that it will be unsafe to discharge her to a group home. In her current condition, she needs 24-hour care. But we can't send her to skilled nursing because she doesn't have Medicaid already for that, but you can't get that kind of Medicaid unless you are referred and admitted. I'm at a loss. I don't want her to go back to a place that can't care for her properly.
Are you your Mom's POA ? Or guardian? I would speak with everyone, the dr., the nurses, the social worker/case manager at the hospital and tell them you REFUSE to have your mother discharged to this group home due to unsafe conditions which you have reported. (right after you report them). Play hardball, and refuse. Also is there a DNR on your mom? (do not resuscitate) Is this something you do not want? You can refuse that as well. And Hospice is different nowadays. It can be something to get extra services and assistance with help, and can even later be discontinued when your mom is doing better. It doesn't necessarily mean it is "the end". Just get more info. on that.
I would look into Mom being transferred to LTC with Medicaid pending. Having a bed sore means neglect. It needs to be cared for by a wound care nurse. I would say since the group home doesn't allow injections then they don't have at least an LPN on staff.
Be aware that when you place Mom into LTC, you turn over her SS and any pension to the LTC. Medicaid should retro back to pay for their share of her care.
I can only suggest that this is an unsafe discharge. To send a 68 year old with severe insulin dependence, bedbound from strokes, and now having a BEDSORE (which I hope was reported to licensure board for the prior facility who apparently didn't even know it exists? Licensure can be taken for this) that is nonhealing????
This is not only an "unsafe discharge" but it is almost a death sentence. I would make that clear to to supervising social workers and hospital administration. Your Mom is in need of SNF until the bedsore is healed. It could lead to sepsis and death. Could easily and quickly lead to that.
Meanwhile medicaid can try to get on board. I will tell you however that in an insulin dependent senior with diabetes who is bedbound, there is no good prognosis in offing in this country. I am sorry to tell you and I know you are already realizing that.
I am afraid that this falls under the "not everything can be fixed category", but I surely would make a lot noise about it, because I, as a nurse all my career, feel that this is almost like a death sentence. I am just so sorry. I wish I had a clue what to tell you to try. I hope someone does.
Skilled nursing, by the way, is covered by Medicare. Wish I was up on the guiding factors and restrictions, but I am not. Your Mom at this point need specialty care of wound nurses.
Metformin is very hard on some people. My former MIL could not leave the house for the first few hours of the day due to having to be close to the toilet. After a couple years of encouraging her to advocate for herself with her doctor to no avail, she moved to my town and was a patient of my doctor.
I had a conversation with our shared doctor, prefacing by saying I know you cannot talk about her, but this is what is happening with the Metformin. He tried another medication and no more tummy trouble.
Eventually she became insulin dependent and for her there was no going back to tablets.
https://dhcfp.nv.gov/Pgms/LTSS/LTSSHome/
FYI: https://www.nolo.com/legal-encyclopedia/when-medicaid-nevada-will-pay-long-term-care-nursing-home.html
Ask the discharge planners at the hospital if your mother is both Medically at need for skilled nursing. Find out if she is financially at need for LTC Medicaid. You may need to gather medical documentation that she is in need of an SNF.
A well-qualified eldercare attorney is probably what you need.
On the Medicaid issue, here is what I might do. I'd go in person to the Medicaid office without her and ask for them to tell you exactly what else you need to do. If it is simply her doctor's recommendation then ask for the appropriate form. If it is an ER doctor's recommendation, ask for the appropriate form and the first time you see ANYTHING that justifies a trip take her to the ER. If the group home needs to make the recommendation then ask for the appropriate form and take it back to them. Medicaid may say they should already have the forms then insist you want it just in case. Sometimes it seems you have to hold everyone's hand and walk them through the system to be sure it is processed properly. Once you get the proper form(s) hand carry it to the appropriate person and tell them you want a copy of it once it is completed. You may not be able to walk the original back to Medicaid, so you need a copy just in case it is "lost" in the transfer. As polite as you can be, keep assuring everyone that you are simply trying to do your part to speed up the process so your mother can get the care she needs. Even if it is true, no one wants to feel accused of not doing their job.
Talk to a few NH in your area to see if anyone has a Medicaid bed available - explain the problems and see if they will accept her so you have the name of a facility when you talk to Soc Wkr and doctor.
You should be able to start the NH Medicaid application with the help of the hospital social worker, in a local Medicaid office, or online. Get all of your paperwork lined up (income, bank accts, etc) so that Medicaid office has what they need to process. You can even take all the paper work you gathered to the local office and ask them if there is anything else you need. If a worker can touch the application one time and process, you avoid lengthy delays.
Is it her primary dr or the hospital dr who wants to return her to the group home care? All you need is verification of medical necessity from either of these drs to do the medical necessity to move her to SNH now.
I definitely think it is in her best interest for you to pursue the move to NH. The group home should have tested for UTI and done something about the wound without you having to step in. UTI definitely is known to create mental confusion and there's a good chance one treatment won't clear it up - will have to be tested again after initial treatment. Bed sores are preventable - turning, wedging, etc to keep pressure off the skin should be part of her daily care. It wasn't happening at the group home. Actually, you might get more information by talking to the group home and asking specifically, does she need more one on one care than they can provide? The dr at the group home may be the one who provides you with medical necessity verification.
I would tell the social worker at the hospital that you will file charges for elder abuse and neglect if your mom is sent back to the group home. There is documented proof that your mom IS NOT receiving appropriate care.
Google washoe county senior services and find out what you can do to get the group home, hospice and hospital reported to every agency, licsensing board, DHHS and anything else that will stop this kind of treatment for her and others in the future.
Here's the thing, your mom could be dying but, doctors take an oath to do no harm and sending her back to that group home has proven to cause harm.
Advocate, advocate, advocate!!
As a former Dir of Admissions for short and long term care facility, I can tell you that getting an admissions to a facility with Medicaid pending has become tricky in many states. In NJ every county used to maintain their own SNF and because they were a government entity, they always accept Medicaid pending cases. Unfortunately, that was partially their undoing because they didn't follow up with families who were not finishing the Medicaid applications (or were trying to hide assets). Anyway, all the NJ nursing homes have been sold to private entities who, while they must maintain a small percentage of Medicaid beds as long as they accept Medicare (ie federal funds), can legally refuse admission to any patient who does not have a guaranteed payment source. This may be the case in Nevada which seems.............. a difficult state to navigate in terms of healthcare. I was on their site yesterday to answer a forum question and got dizzy trying to navigate it! It might be worthwhile to have a consultation with an eldercare attorney who specializes in Medicaid in Nevada (some of them will do a 15 min consultation without charge). Just make sure it is a certified eldercare attorney. I would bypass the many claims of eldercare attorneys you will find in NV if you Google the term and go directly to the National Academy of Eldercare Attorneys at https://www.naela.org and do my search there unless you have a personal recommendation from someone.
Wishing you good fortune in this endeavor. Please keep us updated. I'm really interested in find out how it works in Nevada.