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JuliaDade Asked May 2022

Is fighting for SNF placement wrong in this scenario, or do I just need to accept my mom's natural decline? Are my hands tied by Medicaid?

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.

AlvaDeer May 2022
Yours is a beautiful write up of a dire, dire situation.
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.
JuliaDade May 2022
I basically did tell the hospital social worker that it would be a death sentence to discharge her back to the group home, but they seemed OK with me saying that. She's improved in the 5 days she's been at the hospital, but apparently not drastically enough to merit a discharge to rehab-instead they want to discharge her to her death with Hospice. They are saying she doesn't need insulin anymore because she's not eating very much--um, she's not eating much because she feels like crap from having A BLOOD INFECTION, and that she already can't walk so what's the point of physical therapy. Last I checked, a lot of people live their lives perfectly fine without being able to walk. I just want her to be able to sit in her wheelchair again and scoot around the house like she did before this whole fiasco.
BarbBrooklyn May 2022
Who told you that "Medicaid Pending" doesn't exist?

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.
my2cents May 2022
Exactly. Most people who get sent from hospital to NH have a Pending Medicaid application. I doubt very few people have all the paperwork gathered up for a worker to process a NH Medicaid application on the same day they review the application. Probably more like 99.9% of the applications require a 'pending' letter to be sent requesting more information.

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Tante1946 May 2022
I don't have all the answers, but I can give you information about Metformin. I, too, had terrible gastric problems with regular Metformin. I now take a time release Metformin which is not causing any problems. As to the rest, I would call Adult Protective Services in your county and consult with a social worker about the other issues. They should be able to send you in the right direction at least.

JoAnn29 May 2022
You need to tell the Social Worker that it is unsafe to send her back to the group home. The records show Mom is not being properly cared for. I am actually surprised oral meds are being pushed once she was on injections. My Aunt oral did not work for her so she had to change to injections. Maybe things have changed because that was long ago.

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.
JuliaDade May 2022
Apparently, Medicaid-pending does not exist. Nursing homes will not admit her without guaranteed payment, but the hospital won't keep her for the 3-6 months that it takes to get Medicaid approval. I'm really at a loss of what to do, and I can't seem to find anyone who can help me. I've talked to Aging and Disability Services, Department of Welfare, social workers with the hospital and nursing homes. I'm just at a loss. It seems like my only choice is to send her back to the group home where she will surely decline even further and most likely die. I'm just so upset.
Isthisrealyreal May 2022
Julia, whomever is telling you there is no Medicaid pending facilities in Washoe County is lying through their lazy teeth.

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!!

NancyIS May 2022
Ask the social worker at the hospital to help expedite the Medicaid, and discuss your concerns about the facility she was in. It sounds like your idea of skilled nursing is the better option for her. Try to get the hospital social worker to help you. All the best!

Tothill May 2022
I am so sorry your Mum is in the situation.

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.

ConnieCaretaker May 2022
Call Adult Protective Service and request a Social Worker:
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

JuliaDade May 2022
I also wanted to add that my mom is only 68 years old, and loves playing on her tablet and iPhone, and video chatting with her friends. She was NOT on death's door before the group home let her get to this condition. I'm very reluctant to go back to group home/hospice, but they are making it seem like that is my only option at this point.
Myownlife May 2022
Oh wow, I am 68. And I am looking at returning to work ( nurse ). I just can't imagine your going through this with your mother so young. I just googled and this is the website to report unsafe conditions at a group home in Nevada. https://dpbh.nv.gov/Reg/HealthFacilities/dta/Complaints/Health_Facilities_-_Complaints/
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.
KPWCSC May 2022
My heart goes out to you. I commend you for continuing to advocate as hard as you can for her. I have also had to push and push to advocate for my husband anytime he has ended up in an ER or worse admitted. He has Parkinson's which can be very debilitating, however he is still very mobile with only mild dementia. When a doctor walks in who knows nothing about him except what they saw on the chart, they often want to write him off when they see his condition at that moment. I often have to insist that he was walking and talking before he came in and no I will not put him on Hospice! I realize there will be a time that will be appropriate but until then I will advocate as hard as I can to get the care he needs. Like your mom, he has often rebounded despite the opinions of many providers. Yes, some natural decline is happening but as long as you know what her "normal" functioning could be with proper care, then keep standing firm.

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.
Myownlife May 2022
NO. You do NOT allow them to send this person back to the same group home for the THIRD time ! I would refuse to have her again prescribed metformin. And if that is an issue the dr. won't listen to you and resolve, I would first consult a an attorney for a medical practice lawsuit and show the dr. you mean business. If the hospital, dr., and/or social worker/case management will not assist her with preventing another stay in this group home, then she should have an attorney intervene.
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