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A year ago, I had my mom come to stay in my home temporarily after a heart attack and stroke. Before that she was living in my grandmother's & aunts’ home for 2 years after my dad passed. The plan was that she and my sister were going to get a place together, but my sister never wanted to contribute any money so that's why they were at my grandma’s. My grandma has dementia and is rough to deal with so I thought having my mom at my much quieter home would be better for her and she would finally seek senior housing. She healed very well but took a very long time to even start to apply for senior housing. She is a hoarder and does not live in a clean way and was causing a lot of problems in my home. My fiancé and I are really struggling with dealing with the way that she lives and how it is affecting our home and our mental health.


About 2 months ago she was experiencing some alarming symptoms and ended up getting diagnosed with terminal liver cancer and spent three weeks in one hospital. They recommended acute rehab, but Humana denied it


She was home for 2 days and had to be taken back to another hospital after filling up with fluid due to the cancer. They gave her a catheter type bag to release the fluid when necessary. Her oncologist wants her to do immunotherapy to help extend her life. She was at the hospital this second time for a week and half. The hospital Dr. recommended acute rehab again, but Humana denied even after finding facilities that would permit the immunotherapy.


After that she was home for a week and a half and then I had to call an ambulance for her. She fell when trying to get in the shower after having a messy bathroom accident, managed to get back into her room and stayed in there for several hours covered in her own waste. When I got home from a baby shower and found her like that, I tried to clean her off, but she couldn't stand up and I ended up having to call an ambulance. She had to crawl out of her room so the EMTs wouldn't see her mess. She does not let me in to clean her room and it's disgusting and smells. She's been in the hospital for another week and half and even though one Dr says she needs 24/7 care, and they want her to go to rehab, Humana denied. We filed an appeal.


I cannot have her back in my home. I cannot deal with her level of care needs. She doesn't do anything to help herself, like taking her meds, checking her blood sugar and taking insulin, etc. She doesn't close her catheter bag and it leaks all over my home. The bathroom messes are horrendous. My fiancé and I were supposed to be planning a wedding and a baby and now everything is on hold while we cope with this (and I'm 37, I don't have much time to place family planning on hold). He is at the end of his rope with her. My sister can't find an apartment to live with her. My brother's fiancé is due in 3 weeks, and they can't care for my mom with a newborn. I don't know what to do if the appeal is denied. A relative who works at the hospital says we could deny taking her home and they would have to get her into a facility, but it may be one that doesn't allow immunotherapy. I am feeling so lost, angry, sad, guilty, and spiteful right now. I can't get help from anyone. Humana is trash. I'm in the process of getting the documents needed for the Medicaid app completed, but approval could take 2 months. I don't know what to do.

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Ist of all I am so sorry for all you are ALL going through.
Secondly, sad as I am to say this, this is self limiting. Your Mom is likely dying, but the slow way. Has anyone discussed hospice with her, and with the acuity of her illness I mean INPATIENT FACILITY HOSPICE which is more rare and hard to find than doing hospice in your own home. This would mean no further transport to hospital for treatment of a terminal liver cancer, which cannot be cured.
Because you have taken your Mother into your home she is basically considered a resident there, a tenant whether she pays rental or not. She can be transported "home" if you will, and this makes your refusing to take her into your home more messy. You ALREADY DID take her into your home and now her home is your home, if you get my meaning.
I am assuming that in all of this you have already talked with Social Workers, telling them that Mom's condition is now beyond your capability to deal with. They may need to find her SNF placement (skilled nursing facility) because honestly that care is what she needs. She is too ill to be out of the realm of medical treatment of SOME KIND now, whether it is Hospice or other care. Rehab is and has always been out of the question, and while I agree with you on Humana in general, that part isn't their fault. This is about dying of cancer, not about rehab.
I am dreadfully sorry for all you are going through.
Over and over again on Forum we see well meaning people take their elders into their homes never guessing what it means to themselves in the long run. Your post serves as a warning, which of course does you no good at all.
I hope someone here has better ideas for you than throwing yourself on the mercy of Social Workers, but I don't. My heart goes out to you, you have my very best wishes and I hope you will keep us updated.
Your post was so well written, so thorough about where you are and why; we seldom get posts here with all the details we need to know your situation, so I applaud you for this.
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Sammy, I am so sorry for your situation. I had a homecare client who went on immunotherapy for liver cancer and I know what those bathroom messes are like because I walked into one every morning. Also the messes all over the carpeting and furniture. Your mother won't be able to manage on her own even if she goes into an apartment in senior community. She's too ill for that and needs 24 hour professional staff to meet her care needs.
As for your fiance being at the 'end of his rope' well, I think you all are your mother included. So the anger and resentment from him is only going to make the situation harder not easier.
Bring her to the hospital and ask for a 'Social Admit'. Tell them that she was only staying with you temporarily and that she cannot come back to your house. They will send a social worker down to speak with you. DO NOT allow them to talk you into taking her back because they will try to.
They will talk about all kinds of resources available and promises all kinds of support if you'll take her back. None of it is true. If you refuse to have her back whatever social worker is assigned to her will have to earn their money and find a care facility that will accept her with the type of treatment she's receiving for her liver cancer. Also, the care facility the hospital finds for your mother will take care of doing the Medicaid application for her. You don't have to do that. I'm sorry to say, but they might not get to everything on your two-month time frame. There are millions of people in your mother's condition and whose families are in the same situation as yours and worse. Bring your mother to the hospital. They will not put her out on the street. Their social services department will place her.
The American Cancer Society can be a valuable resource too. They can help find your mother a care facility who can accept her.
Where is your sister in all of this and the aunt her and your mother used to live with? Where is your sister living? Talk to her even if it's just for moral support. Good luck.
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Sammy22 Jun 30, 2022
I'm just so worried they won't find her a facility that would allow her out for immunotherapy. Unfortunately my sister is not grounded in reality for a lot of things (right now after a huge issue she's not even allowed in my home), she thinks my mom should be at home. But she's not the one who will deal with everything. My grandma has bad dementia so my aunt is in charge of that home but she didn't want my mom back either (after the heart attack) because of her bad living habits
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Talk to the Social Worker
Tell the Social Worker and medical staff that you can not take her home.
You can no longer care for her in a safe manner.
To discharge her to your home would be UNSAFE.
You can also ask the Social Worker if they can provide any help in the application for Medicaid.
I can not imagine a facility not allowing a person to continue on a prescribed treatment. (Other than maybe a Hospice In Patient Unit where the goal is symptom management and pain control)

I am going to be blunt here and if it hurts I apologize.
What is your mom's prognosis even with Immunotherapy? Is it going to add QUALITY to her life or will it add quantity? If there is no QUALITY is there a point?
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Sammy22 Jun 30, 2022
Unfortunately there are many facilities in our area that will not allow cancer treatment. Each time they tried for rehab they ended up finding some that would permit it, albeit up to an hour away (which family is fine with if that is what needs to be done). I'm just afraid if I "abandon" her at the hospital they're not going to care where she goes.
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Refuse to take her back from the hospital, let the state take over, they will find a place for her.

If she is terminal she needs to be in a nursing home, the state will handle all the red tape.

Sorry about this, take care.
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I am so sorry you are going through this. I'm guessing your Mom is in her 60s if you're 37. I have Medicare and Humana. They have been so good to me with my ongoing medical issues. Her doctors should be discussing things with Humana to get needed treatment approved. They should fully be supporting you. With that being said, was your parent a good parent? Did she raise you well as best she could? My health isn't good, but, I take care of my parents the best I can come hell or high water. My dad has neuropathy, causing falls, and he sometimes loses his bowels when he falls. I have to call paramedics to get him up because his legs will not work. I clean the floors and such everytime it happens. Yes, it's gross, but he took care of me and now I take care of him. He now has terminal lung cancer as well. My mother has dementia and is very very difficult. Everything she can't find has been stolen. She gets very combative. I do everything I can for her as well. She refuses any medical care. She thinks everyone is against her. It's really hard, but like I said, it's my turn.
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BurntCaregiver Jun 30, 2022
AngryMom,

If you choose to die on Caregiver Hill, well that's up to you. Everyone isn't willing to and they're not wrong.
Maybe your parents would be better served being looked after by care facility staff 24/7 instead of by one single, aging, woman who has health issues herself.
As for your mother with dementia refusing medical care. Why is she even allowed to decide anything of she's not in her right mind?
It's not 'your turn'. It is no one's turn to live in such a situation.
Did you ask to be born? No, I don't think so. Your parents chose to become parents and bring up a child. You don't owe them for that.
If they were good and loving parents, then naturally you want to help and care for them.
Please for your own sake don't get lost in the F.O.G. so many get caught in when it comes to elderly parents. They would not want you to. Being an advocate for that makes sure they're getting the best care possible is just as important as doing their care. For your own sake, let professionals do the hand-on care for your parents.
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"I cannot have her back in my home. I cannot deal with her level of care needs. "

It all comes down to the above. Your brother and sister have removed themselves from the equation; time for you to do so, also.

Your relative was spot-on -- do NOT allow her back into your home.

You gave up a year of your life for her -- time for you to move on. She needs appropriate care in a facility.
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I agree. You have to refuse discharge as she is unsafe in your home. She needs more care than you can provide. Force the social workers to find a placement for her that is covered.
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Do what was suggested, exactly: refuse to take her back from the hospital when she's ready for discharge. This is not for short term rehab and immunotherapy but for long term placement. It sounds like immunotherapy would only extend her life for a short while, so it may not even be a prudent idea at this point. Terminal liver cancer requires 24/7 care in a Skilled Nursing Facility, not care by a family member. Your mom is beyond the scope of family care at this juncture. The hospital social worker will find room for her somewhere, as long as you are ADAMANT that you will not accept her back in your home. She'll be taken as a resident with a Medicaid pending application.

I am very sorry you are in this position, and that your mom has been given such a diagnosis. Sending prayers that God takes her quickly and painlessly so she does not suffer any more here on earth. I wish you the best of luck moving forward, knowing you're making the right care decisions for mom.
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So sorry for this horrible situation with your mom.

What is her prognosis with terminal cancer? How long do they expect her to live - sorry to be so blunt! If she wants EVERYTHING done to extend her life, OK. If she wants a lesser approach (which I would personally do), then you should get a hospice eval.

Her oncologist wants her to have treatment - of course. What does SHE want? Does anyone have POA for her? Is she still competent?

Sorry to say, but I'm not surprised that an insurance company denied her the ability to go to rehab. If she on Medicare? After 3 nights in the hospital (I think), she could go to. a nursing home for X days on Medicare, then a reduced % covered, etc. It's not perfect but it would be a start.

I think your relative is on to something with saying that you can reject taking her back home. Her condition is such that I agree with that. It is way too much! You have a life to live and things to plan and take care of.
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Sammy22 Jun 29, 2022
Her oncologist says she cannot give us a prognosis on how much time she has. My mom was offered hospice as well, but wants to try immunotherapy. Her competency and mental health is difficult to explain...she's competent in some aspects but not in others. Like not taking her meds and managing her diabetes - she doesn't not take them because she doesn't care or wants to die, but I think it's a combo of her being lazy, it's too much for to handle, not realizing the importance, and possibly even fooling herself into thinking she's taking them.

I have POA with my brother as the secondary.

Because of the Humana, I'm not sure about Medicare. One facility that was willing to take her explained that they would get her off the Humana and onto straight Medicare if she got in. I'm so confused by it. She also has Champ VA as a secondary (my dad was a veteran).
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