I really don't know where to start, so much has happened. Okay. I brought my mother to the hospital around the holidays because she was weak, dizzy and not responding. She was admitted and told she needed rehab for 14 days inpatient. Let me give you some history about my mother. She is 80 years old, a feisty active person, loves spending time with her friends over a beer or two, and is able to walk up a flight of 15 steps at her home. She has RA, vascular dementia, pacemaker, etc. Please keep in mind I check on my mother daily and see her regularly. She went to inpatient rehab against my better judgment. Due to COVID-19 I didn't want her to go rehab inpatient because I feared she would catch an infection. The doctor insisted that this was best for her. Well, within 5 days she caught a C. diff infection and was not responding. I wasn't even informed. She almost lost her organs, that's how fast the infection spread. She's been in the hospital for 3 months and now rehab. The hospital didn't help her much at all with her mobility and wanted to send her initially to a skilled care facility after a week, but they refused her because she was too ill. She was basically unconscious. Okay, they placed a "G" Tube in her until she got back to eating on her own. They refused to remove the tube when exiting the hospital. All the rehabs I interviewed wanted to place her in a nursing home. My mother gave me Medical POA in case there were an issue with her health. Her mobility has improved, but she's still unable to walk. She's talking, moving her legs, etc. She wants the tube removed and diapers off. She's unable to fully stand on her feet. I asked to have my mother transported in a wheelchair and then get assistance to the toilet, but the rehab refused. The rehab stated it takes too many people to assist her and she is unable to stand long on her feet. Tube feedings are being given to her 12 hours a day plus they want her to eat big meals 3 times a day. She said too much and she's vomiting up the food. They refused to remove or reduce the feeding tube time. I have legal Medical POA that addresses this issue, which my mother appointed me to make the decision. Of course, I discuss everything with my mother, except when she was unconscious. The rehab informed me the POA means nothing and we have to do what the doctor says. My mother wants the feeding tube out of her belly and wants to resume going to the toilet. She wants to go home. She is upset about passing waste and urine on herself. They have threatened me to call authorities on me if they feel I am abusing her. I want to remove her and bring her home. She wants to go home. Please help. Your insight would be most appreciated. Signed Concerned Californian.
https://aging.ca.gov/Programs_and_Services/Long-Term_Care_Ombudsman/
Edit to add: I'm assuming she is in a Skilled Nursing Facility for rehab. Is this correct?
I appreciate your response and thank you so much for your information.
IF you are going to bring her home it may be ONLY with the help of Hospice and Palliative care. However, if this is the case, then it must be clear to you that this is end of life care, that you would not ever be going for "treatment" again.
See an elder law attorney. This has gone a long long way already, and things are about to get nasty. You need now to know what you want for your Mom, that is to say what she instructed SHE would want. If her advanced directive does not have specific instructions such as "I do not want and will never accept NG, PEG or TPN feedings" and "I will never accept dialysis" etc. all of this becomes much more difficult.
If your mother is "of an age" I am very very surprised in this day and age that they are insisting on all of this for a patient with dementia and such debility.
See an attorney.
if your mom is unable to stand , then she cannot get to a toilet as needed. Sucks, but the depends is a fact and consequence of her illnesses and condition. My mom is not far off from being able to walk to the toilet. A result of her decision to quit walking down to dining room for her meals. I did everything I could to get her to see that she will end up in a wheelchair. Hospice brought the wheelchair last week… I would not expect my moms caregivers to continually clean up after my mom if she wasn’t wearing her depends. That’s an unrealistic expectation.
If your medical POA is not activated, that would be why they are telling you it means nothing. Directions come from the doctor who oversees your mom. Have a Frank discussion with whomever is following your moms care. Then you will be able to understand what needs to happen going forward. Honestly, I don’t think your mom will recover from all this.
The only way I can see you being able to get Mom out of rehab is to have her placed on Hospice. Then the feeding tube can be removed. You can do it from home but you will be her caregiver 24/7 unless you can hire an aide. Hospice care is paid by Medicare. You will get diapers, her prescriptions and other needs. A Nurse will check on her maybe 3x a week and an aide maybe 3x a week for bathing. You will be taught to give her meds. (We did have a poster say that the Hospice she used supplied an aide for 4 hours I think that depends on how many aides a Hospice has available) I would talk to a Hospice near you to find out what you need to do and what they can do. Yes, Hospice means the end. But it also means Mom will not be going thru what she is now. Her comfort is Hospice's concern. This will be a hard decision. But if you can be Moms caregiver it maybe the right decision. I based all my decisions for my Mom on how she was effected. There comes a time they just don't want to be poked and prodded anymore. Be aware that if you get Hospice care, you will be responsible for the cost of a transport to get her home. Hospice also means no hospital. No extreme measures to keep Mom alive but...she will be kept comfortable in her own home. *
This is what I would do. I would talk to the Doctor in charge of Moms care or the Director of Nursing and tell him/her that you want a Hospice evaluation. That you feel Mom has suffered enough. If the eval shows that Mom fits Hospice criteria, then take her home. If you have any resistance from the facility, call Adult Protection Services telling them Moms wishes are not being carried out. Have that Medical POA available. Rehabs are not prisons. Mom has rights.
*Hospice can be done at the facility but Mom will be responsible for the cost of the facility stay. Medicare only pays for the care not the bed.
So sorry for what you are going through.
Also, hospice does not mean no hospitals ever. She can go to a hospital, but hospice has to be discontinued while she's there and can be restarted when she's released.
If she had a fall, for example, and required stitches, she can absolutely go to the hospital and get them.
If mom is not getting PT she should be so she can regain strength. If she cannot transfer herself from bed to toilet she will need a lot of care at home.
Rehab wanted to move my dad to the nursing home but I insisted on taking him home. He was wheelchair bound but was able to transfer and move himself. Yes, we had day to evening sitters but it was so worth it. He enjoyed a much better quality of life.
You may need to meet with the rehab director to get her discharged. Do not remove her against the doctor's advise because Medicare may not cover her rehab stay.
Be honest with yourself about her condition. Forget what she WANTS to be able to do, forget what YOU want her to be able to do...what CAN she actually do, several times a day, every day? Her condition may have deteriorated to the point where she cannot go back to how she was before.
The point about the feeding tube and the meals and the vomiting is disturbing. I doubt they are doing it to be cruel to her, so that does sound like something to talk to the doctor about, and if that doesn't resolve it, to talk to an elder care lawyer about as well. Talking to a lawyer in general may also help you - they can explain all the different pieces, what the legal requirements are, what the limits on POAs are, etc. Also, if your mom is still competent and can adjust her living will, she can do that to refuse certain types of care, like the feeding tube, if she wants. That might shorten her life if she medically needs it, but that's a choice she can make.
Good luck. I know this is hard.
Sorry to hear that you are faced with all of these challenges.
You mentioned that "the rehab stated it takes too many people to assist her and she is unable to stand long on her feet. Tube feedings are being given to her 12 hours a day plus they want her to eat big meals 3 times a day. She said too much and she's vomiting up the food."
As others have stated, your medical POA does mean something, but have you considered how you would address ALL of your mom's needs at home - feeding, hygiene, bathroom needs, safe lifting, physical therapy, etc.?
If you bring her home on hospice, is your plan to attempt to nurse her back so she eat without a feeding tube, and be mobile with the assistance of a walker? If so, this will require a huge commitment from you -- beyond the daily calls and check-ins that you were used to doing.
I have nursed back my mother several times from having a stroke, TIA, etc., so it is possible to nurse someone back, but it requires a huge commitment. There will be outpatient physical therapy needed, and ongoing therapy exercises led by you to help build her muscles. There will be a variety of techniques to learn for safe feeding, balancing nutritional needs, transferring, lifting, maintaining good hygiene, etc.
You will need to ensure there are furniture re-arrangements, medical
equipment leases and some purchases, etc.
I have been on this journey for 9 years so I am speaking from experience, so my advice is to research all of her needs and come up with a plan on how you would be able to cover those needs.
Check with her insurance on whether they cover in-home and outpatient physical therapy.
Will you be the only person caring for your mother if she returns home?
Are there funds available to hire part-time caregivers to help with your mother's needs? (I hired 3 part-time caregivers but it comes with a lot of instructions and coaching because these agencies don't usually hire the cream of the crop)
Again, sorry you're faced with these challenges. Don't make any decisions without having a plan to address ALL of her needs.
I had camera in room 24/7. Simple hydration very important. I complained and facility told me my husband refused fluid. I had video showing they were not offering him anything.
I got so tired of coming in and seeing him soaked in urine, trousers soaked, bed soaked.
I know the very hard work you have done to care for someone at hone. In the end - is there anything more important than providing the highest possible quality of life to a loved one in their final days?
Doctors in Nursing Hones are hired and fired by the administrator. One of the major tenants in Centers fir Medicare and Medicaid law is that patients have the right to refuse care. Unless your mother has been declared incompetent by a judge, she can make her own decision to leave.
Nursing homes are miserable places to live. No privacy, 24/7 noise, constantly rotating care givers, and more. I was in a nursing home 7 months. There was actually a very good, compassionate administrator. Still - the nature of the business is misery.
The people at the rehab are using intimidation tactics and trying to scare you because they run the bill up.
People have a right to refuse medical treatment. Cognitively impaired people who have POA's that were appointed when they weren't cognitively impaired have a right to refuse medical treatment on their behalf. Get yourself to a lawyer right now and explain what this 'rehab' is doing to your mother and about the POA.
I had my father's POA. The hospital wanted to put him on a feeding tube. I said no. He wouldn't have wanted it. They tried to persuade me, but in the end respected my decision.
Does the rehab your mom is in have different areas of the facility that feature long term care, skilled care, and memory care? My guess is they do. They want your mother to become a long-term care resident because she's probably no trouble to them and she owns a home. Please get to a lawyer now and then go to the cops and tell them what they're doing and that you want to take your mom from there.
By the way - most people only get C. Diff when they are receiving multiple antibiotics that wipe our their normal gut flora. Everybody had C. Diff in their digestive tract. Usually it stays in balance when their gut flora is OK and they are have a healthy immune system.
From my experience with these places the nurses in charge range from “company robots” who know better but won’t go against the administration to incompetent idiots who could not make it in a real hospital setting. The doctors associated with the nursing homes typically have their own practice outside of the nursing home and are AWOL from most of the nursing home/rehab patients and rarely seen or heard from except to approve meds recommended by the nurses. It is a joke and a money maker for them. Their fall back position is to always claim there is something about the patient that prevents care/PT etc or renders the patient’s version of what is really going on “unreliable.” I would avoid sending a loved one to an in-patient rehab unless there is no other choice. The quality of Medicare approved home care (P/T and nursing) is so superior there is just no comparison. It is one on one and can be observed by family. The “rehab” offered in most nursing homes is nothing short of a fraud on the patients, families and taxpayers. The enormous amount of $ coming in to nursing homes for this so-called rehab care is the bread and butter of their profit.