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.
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.
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).
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.
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.
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.
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.
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?
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.
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.