Bluebird, I am very sorry at how upset you are and the situation with your mom. I admire you for having tried to take care of your mom at home but also knowing that NOW this isn't working well for her. To me, you are being the best daughter you can be in pursuing further help and care for your mom. And you were a good daughter to try it mom's way which has now failed. There is no perfect here. What has been done is simply not working and it is time to rethink what the goal is. I am saying do not have the guilt you carry because mom's health has become so serious that she can't stay at home any longer. Give yourself a pass.

I say it isn't working well for her because being in and out of the ER is not good medical care and shows someone needs far more care than they are getting. I do not blame you and I do not criticize you. You tried what your mom wanted but now as the loving daughter you are, it is perhaps time to do what your mom doesn't want as far as the care she needs. Love means making hard decisions sometimes and this is one of those times. Mom needs you to drop the guilt and not listen to her demands. She isn't able to care for herself at home and so you must now do what is truly best for her. I don't know what that is, but there are people who can help you (social workers, geriatric care managers, hospice).

I think it is actually a good thing for your mom to go from the hospital to a rehab facility. Because there she will be assessed for her medical needs and the doctors and social workers will help you figure out what kind of care she needs. Sometimes these places are not good but often they are good. If you are in the USA, there are two kinds of "rehab facilities" -- one is actually an Intensive Rehabilitation Facility, IRF in which the patients must have 3 hours of physical rehab per day. This is a short term stay. Your mom may actually be too old and sick for this kind of intensive rehabilitation, physical therapy, occupational therapy, etc. Patients are expected to participate per Medicare's requirements for reimbursement. Now the other type of "rehab facility" is actually skilled nursing facility or SNF (pronounced sniff). This will have some physical rehab but much much less and patients can lay in bed all day if they so choose. There will be doctors and social workers trained to work with the elderly and people at the end of life in poor health. People can stay in a SNF a lot longer than in an IRF. But these facilities are not nursing homes.

If your mom has terminal colon cancer, please look into hospice care. Hospice care is available in many many countries if you are not in USA. It does sound like your mom needs paid caregivers 24/7 as you were told. She may even need two people to help lift her and help her walk, or they may use a "Hoyer Lift" to move her from the bed to a chair or wheelchair or in the shower. If she needs these things, it can be EXPENSIVE to keep a person at home and unsafe in the bathroom, etc. Ask if your mother is considered "dependent" for care meaning if she needs two people to help her stand or move. Difficult choices so we can't blame ourselves, as this is not helpful to you or to her.

At any facility, the family does have to pay attention to the care the patient is being given. Period. If she is at her home, you still have to make sure she is safe and getting the proper care. Being in and out of the ER is not proper care. And your mom's difficult personality make it harder. And yes, sometimes people fight to stay alive for a while and then they give up and decline. It is not absolutely that the facility makes the patient decline but that the truth is they don't arrive at the facility until they are already declining. So stop blaming yourself and feeling guilty. Families can't make a loved one stay alive by simply wanting it or keeping them home or putting them in a facility if care needs are too great. We do not have the power or control to keep someone alive past the time their body is giving out. Your grief over her passing may hold you hostage to a chaotic mind and guilt and all of that. So I encourage you to seek geriatric care management to guide you.

If your mom has terminal colon cancer, which my mom died of, she is eventually going to go down hill as you called it. This is the process at the end of life. There are hospice in-patient facilities that can help everyone process her end of life, give her a good quality end of life with pain control, and provide the type of medical and physical care that families usually can't provide. There are hospice at home companies and all will assess the patient and tell the family what type of care they feel is needed.

At the end of life, on hospice, my mom became bed bound from colon cancer and TB, and needed 24/7 care givers. Because she was youngish and went from walking and talking and taking care of herself to lying in bed in active dying stage in 8 weeks, we could keep her in her retirement apartment. But I was going back and forth every other day and I had to coordinate with hospice and the caregiving company and all of that. I had to check mom for bruises and bed sores myself and remove all her valuables from the apartment.

You are making good decisions in seeking further care for your mom. If she can come home, the "rehab facility" will assess that and get her ready to come back home. If she is more towards the end of life, yes, her body may be giving up. That can't be stopped. My SIL tried to stop my in-laws from dying by force feeding them, making them get up and sit in a chair all day even when the were in the active dying stage and keep them in facilities that could not manage their care. So know that you are doing what is right at this time. You did what was right a few months ago but now it is not right at this moment for your mom. After she is assessed better at the rehab facility, find out if she is terminal cancer patient and see about getting hospice care. They will help provide a loving and quality death process for her. They have social workers who will help you process your grief. They will honestly tell you the truth if they are a good hospice company.

And if you are in the USA, you can move your mom to a better facility if you need to. We have the Area Agencies on Aging who can tell you who your long term care ombudsmen are if you have complaints and they may be able to guide you to further help finding good care for mom. This is a federal law so every state has them. If you are in the USA and your mom is on a Medicare Advantage plan, her plan may limit who they are in network with. In some areas, these Advantage plans have lots of in network providers but in my large metropolitan city, they actually have FEW and it is difficult to find care. If you are able to, consider getting her back on regular Medicare but you have to do this quickly as time runs out in early December to make changes. Medicare pays for in home hospice care with certain perimeters of disease progression.

Oh, yes, if you are in the USA, the website medicare.gov has ratings of all skilled nursing facilities. I am sending you much love and big hugs. This is a hard time for you so seek help for yourself in making wise decisions. In the USA, there are geriatric care managers. Facilities should have licensed social workers, which are better than nursing care managers. The doctors at facilities that are true rehab facilities have doctors who are rehab doctors and who will tell you the stage your mom is at and what care she truly needs. Know that I am thinking of you at this difficult time. Be good to yourself. You can't make this situation perfect for your mom or for yourself. You can only do the best you can do, which you have been doing.

When making life decisions for our parent, it is necessary to get the valid feelings out, and then separate them from the actual event decision.

This allows you to see that you are making a business decision without emotion. It's so important to pay attention to all the little details of the physical well-being of the parent when they are no longer able to do so.

Rehab is the safest place for your mom to be, end of life palliative care is the best option to look for resources and availability to provide 24/7 care for your mom.

Your mom is going to say she wants to go home. She can, when she can take care of herself.

You aren't letting your mom down Bluebird... Her 96 year old body sadly is..... I remember these times well and it's so hard and we can sure saddle ourselves with guilt that we don't deserve

Your mom needs around the clock care and she's getting it in a facility and yes things are really backed up now due to Covid....

Health care workers have to adhere to Covid rules so things can take a lot longer... I am presently having to wait almost 3 months for a ultrasound on a really painful leg

She may say that she wants to go home however she needs hands on care around the clock.... This is more of a pipe dream or wishful thinking

You can visit when you are able to and you can know that she's being well cared for by professionals who know their job 24/7 and that can be a big relief for you if you let it be..... Big hug...xo

Please don’t beat yourself up over this. You have done your best. Of course your mom wants to go home. But from what you describe she is pretty out of touch with reality. With her age and diagnoses she probably won’t be around too much longer. Both of my parents died under hospice care. They provide family counseling too.

Thank you all for your feedback. Your info and insights helped. We will see how she does now