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Hi, I am new here and wasn't sure where to go. My mom (56) fell seriously ill last year and was rushed to the ER in what ended up being a 3-month hospitalization with a significant part in the ICU on a ventilator. She was moved to a rehab after, and has been at a skilled nursing facility where she has been for almost a year now. She is doing much better but her short-term memory is very bad. This is a major concern for living at home alone (even if we do get a caregiver) Also, she didn't take great care of herself at home which is what contributed to the long hospitalization. She of course wants to be at home.


How does one best assess the next steps between assisted living or potentially returning home? And are there any outside resources (we are in CA) that can help us with this? I work full-time and go to school, as my mom is younger, we didn't anticipate planning for this level of care so soon. Are there any financial resources for those who are unable to afford assisted living? Any insight at all on navigating this is super beyond appreciated. Apologies for all the questions.

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Welcome!

The 1st step to determine what level of care is appropriate is a needs assessment. The SNF should be able to do this for you. You can also contact the council on aging for her county and ask them for one. They can give you a list of community resources available, as well.

The hardest part of this is going to be learning that she can't necessarily have what she wants. What she needs has to be the determining factor in any decision now. This is going to be hard for all of you, just a heads up.

The facility she is currently in should have a social worker that can help you navigate the next steps. Ask to see them and find out what moms true prognosis is and what the doctors are saying about her ability to function at home or does she need 24/7 care.

I am so very sorry for your family. She is so young to be in these shoes, as are you. Please don't let anyone tell you that you have to forsake your life to prop hers up. Taking care of her means you ensure that she is in the right environment that can meet her needs, not being the boots on the ground caregiver.

Once you do the above steps, you will have a better idea of how to proceed. And you are fixing to find out what a puzzling journey this is and how much you didn't know, you didn't know. Ask lots of questions and take notes to help you ensure that mom is where she NEEDS to be.
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Beatty Jun 2022
Hadn't read the replies yet.. I am on the same thoughts track.

Your reply is good solid common sense yet caring & understanding 😃
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Gosh so young to be in a NH😥

I think getting the most up to date info from her care team (Dr, PT, Neuro) to discuss care needs going forward & if living independently is possible is key.

Ideally your Mom should aim to be as independent as possible, but importantly, be set up to *succeed*.
(Returning home, if not enough supports would set up to fail).

Wth the short term memory issue it may be too hard to live alone & arrange the comings & goings of daily caregivers. I'm wondering if smaller group home type living exists? For ages 45-65? Maybe one paid caregiver on site? Regular Care Management check-ins to arrange appointments, transport, daily tasks etc. Sadly there is hardly anything like this where I am but it exists for the very mentally ill or those with profound disability - with long wait lists.

Was Mom living alone before? Or with a partner who is retired, fairly fit & willing to be a full-time caregiver? (Very few would be that lucky!) Obviously it can not be you due to your work/study/young age/life needs.

Is there a Social Worker attached to the NH you could contact?
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There is a way to get people out of nursing homes and into getting care in the community, but it doesn’t look like the state of California is that great about doing it.

https://calmatters.org/health/2022/01/california-nursing-homes-transition/
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The likely overriding factor determining where your mother goes to is cost. If she goes home, who is going to keep her safe? Is there enough money to pay for in home help? I would advise against you giving up your job and schooling to take care of her. You can if you want to, but please be clear in understanding you are in no way obligated to. It's unlikely there are any programs that will fully or partially enough to make a difference that are paid for by the state. If you decide you do not want to give up your job or even if you wanted to, you can't afford to, you need to make that clear to the discharge planners and social workers. The next step I think would finding a facility that can take care of her paid by MediCal.
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Hi! You have all our sympathy. One clarification – you say that mother “fell seriously ill last year ”. I read ‘fell’ and assumed it was all caused by a fall. I reread and that probably isn’t correct. Could you tell us more about your mother’s illness and her current state of health? And what you mean by “she didn't take great care of herself at home which is what contributed to the long hospitalization”.

If she is still in a NH a year later, we need to know more about her health issues to make good comments on your options. People don’t often go from a NH to back home or to AL.
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Hello everyone,

My younger sister posted this for my mother as we are seeking as many resources as we can. Some additional facts:

-my mom is severely mentally ill. she has been in and out of hospitals for the last 5 years with infections that resulted from her leg (MRSA, etc). She was severely overweight and did not keep up with grooming, healthy habits, medications, doctor appointments, etc. every time she went into the hospital, she would return shortly after. I have brought up the mental health issue tons of times until I was blue in the face. The issue was that during those times my mom was coherent enough and deemed mentally stable enough to make her own choices. Without getting too emotional, I have yelled, kicked, and screamed and got nowhere. My mom physically looks mentally ill too so it was discouraging that more support was not provided.
-the current rehab facility isn't super helpful. I have never been able to speak to her ACTUAL treating physician, even after leaving multiple messages. the social workers at the facility have never given me any copy of an actual assessment that was conducted to prove she is actually okay to go home. My sister and I are really looking for resources mostly on our own.

We appreciate all the help and support. Reading through all the messages now. Thank you! :)
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mstrbill Jun 2022
Hi Kbee, welcome!

You also may want to talk to a state employed elder care social worker. The social workers at the facility she is at now may be more interested in protecting the facility than protecting your mother. In other words they may be looking to discharge her as soon as possible. If you talk to someone from the state you can tell them you believe your mother is at risk and is unable to care for herself. You and your sister are also in no way obligated to assume caregiving responsibilities. Make it clear to them you both are unable to be caregivers due to other responsibilities.
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