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Mom fell recently and recovered after an ER visit. She looks better but is now depressed. My mental and physical health is at stake if I continue to be a 'caretaker'. Her medical follow up is a routine blood lab at this point. She is refusing routine medical care she says. This is where I draw the line. So I just sent a message of 'notice' to family members regarding my mother and her future care. I told family in the message that if she were to fall in the future and require rehab, that if she needed further 24/7 care at home I would no longer be able to provide that level of care and she would more likely have to be placed in long term care or assisted living. For the past seven years, I've been a family care-er, for a sister who fell ill, long distance for an aunt, and at home for my mother, all while having a teenager whom I feel has been deprived of my attention and resources. I've tried to manage caregivers, recruit family and friends in tasks and sometimes it's been successful but mostly the colossal load of grunt work has fallen on me.


Just in the past year, I can feel my own aches and pains and have neglected routine medical appointments. I've paid to have help come in, but each have moved on, and the process of finding someone begins again. Family and friends visit when they want but on their terms and never to formally relieve me which bugs me - I've been clear I needed time. It turns out for family members visiting I have to present as well to entertain or facilitate the visit. It gets tiring or I find myself annoyed at gratuitous offers of advice. When I have listen to what other's feel is needed in the current circumstance, I find myself cutting the conversation short and probably come off as rude. Everyone has their comfort level and capacity limits and I am learning to be more accepting, I've been fortunate that my own support system: a caregiver group, reading this forum, friends that regularly walk with me, and a long distance sort of relationship have been a lifeline.


I think I have to draw the line to save myself if there is to be a me and draw the limit of obligation. My sister and my aunt were acute cases where there was no time to process their situation fully and instinctively I cleared everything to be available, whereas my mother has declined with age and I've been here over the past five years increasingly full-time. I know mom's wish is to remain at home until her death. If there were support, maybe would be possible, maybe not. I just know now I need my home and my peace of mind and to pay attention to my son.

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Go take care of your son. Your mom's life is coming to the end, but your son has his in front of him. Sorry I think that raising children trumps trying to keep a senior that needs 24/7 care in their home.

If you look in a dictionary that would be under selfish!
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Don't short change your son, that is just plain wrong. Your mother is at the end of her very long life, time for her to be in AL, there is no logical reason not to do this for her and you both.
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Don't wait for her to fall. Hand in your resignation tomorrow and restart your life and your son's life.
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You have so much on your mind. You’re torn in a million different directions. That was me too. I have regrets.

Don’t feel guilty about wanting to be there for your son. It destroyed me taking care of my mom and not being a part of my daughter’s lives as much as I wanted to.

Follow your instincts. Your son comes first.

I agree with other posters. They gave wise advice.

Hugs!
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I agree with everyone!! Take care of you and your son!! Don't feel guilty!! Your son comes first!!!
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Thanks to all who responded here. Not a peep from the recipients of my message to concerned family members. Like talking to the wind.
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rovana Nov 2019
You informed them.  If they refused to help, then it is YOUR decision - they have no say. The fact is that your mom almost certainly is beyond assisted living - and nursing home level care at home is almost impossible unless you have lots of money and willing family. Since you cannot continue without risking severe damage to your health, and your first responsibility is to your child in any case, then I don't see any choice.  I'd just proceed to find placement. Hopefully after you have made the decision, things will begin to fall into place.  There is lots of sorrow, tragedy, etc. in life. Just the way it is.
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Has hospice care been suggested?

Is your mother's depression being treated?

Your son is your first priority. Can mom budget for the fees at a local Assisted Living facility?
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EssieMarie Nov 2019
These LOs won't go willingly. As one caregiver confessed, she had to drag her mother kicking and screaming! This is too much to bear. It takes a village !
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Your mother is 96 for goodness sake. Good on you for making the decision you have. Now stick to it. Let someone else take this on
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Your family and friends do what they do "on their own terms"; so should you.

Get moms needs assessed (ask her doctor to order a needs assessment and if she says "oh no, she does so well with you" either find another doctor or tell her that this is killing you) and the find a facility that can provide it.

Much as you might wish it, other family members are not going to volunteer to take mom on. Most families have neither the time nor the will to provide nursing- home level care to an elder; they understand how difficult it's going to be and opt for a good facility.
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Your post is an exact duplicate of my situation. Would you be the one to place her in a nursing home if she were to fall again? When my mother lands in hospital and is asked if she wants to go to rehab she says no! And i say yes for awhile. But they always abide by her wishes no matter how i feel. I keep hearing that loved ones outlive their caregivers. With the caregivers decline in health, i sometimes believe this is the case! I have a back injury and pinched nerves and like you, wish my brother would relieve me for a while. But he's too busy and can't be involved. I say do whatever you need to do to regain you physical and mental well being!
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Pasa18 Nov 2019
EssieMarie, I have been reading too about caregivers falling ill or dying and some days it feels like it doesn't it. I somehow strained my side and was incapacitated for a few days after the last ER visit. I didn't feel it until after we arrived home. Absolutely not one person showed concern about my inability to function, which effects my mother. If she is admitted to the hospital a next time, I can say that she is no longer safe to return home because there is not 24/7 care available at home and a discharge nurse will find placement in rehab. I've tried to respect her wish, but it's a sacrifice on my part that I can't afford. I put in time for a sister and an aunt, and now my mother for five years.
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If financially feasible, your Mom should be in a long term care facility. Every minute she is at home is an accident (fall) waiting to happen.

Evaluate her finances, her insurance and no more than 3 long term facilities. Involve your family members and make appropriate plans. You and others will be able to visit your Mom. She will be safe from injury and well cared for.

You both will be able to enjoy what is left of your lives and your son can have more quality time with Mom and Grandma.
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You have reached your limit. The question now is not really the effect on anyone, whether there is anger, sadness or depression for Mom or for anyone else in the family. The question is, will you proceed forward now to do what you know you must do for yourself and for your son? You Mother will almost certainly be sad and depressed. Is that not a proper response to but one more loss in what is, at the end of life, loss after loss after loss? Allow her to express her grief, even her frustration. Even her anger. Allow the family to do the same. Tell them all that you are so very sorry, but that you have reach now the end of what you are humanly capable. Remember the end for all Saints. Shot through with arrows and an eternity of people praying to them to fix everything that ails them. It is not a very attractive job. Please take care of yourself. Your Mom now needs placement, and your loving visits when you are able. I am so sorry for all you are all going through.
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Pasa18 Nov 2019
Thanks for the image AlvaDeer. Saints shot through with arrows with an eternity of people praying to them to fix everything that ails them. My mother, of course, sent me to catholic all girls high school, but it didn't take very well.
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Pasa and Essie, the hospital can not send them home if you won't prop them up.

You put in writing that you will not be able to provide proper or safe care and if the hospital insists on sending her home without a safe plan for care in place then they will be responsible for the outcome. Give a copy to everyone that is involved with the decision to send them home. I would also ensure that the director of the hospital gets a copy.

Your moms are free to make those choices, you are free to say that you won't participate in the bad choices in any way, shape or form. I would not help them get home, i might stop visiting and answering calls. It is not in their best interest to go home without rehab and it is killing both of you to prop them up. Stop doing it for your own sake as well as the sake of your children and spouses.

It will be hard to say no, but it gets easier after the 1st time.

Take care of you and let the professionals handle your moms. There truly comes a time when they need a village.

Strength to both of you to learn to say, NO! It is a complete sentence. No explanation or excuse required. No. No. NO! NO!
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rovana Nov 2019
I suspect that a great deal depends on whether the "home" we are talking about is the elder's home (and they are not legally incompetent) or if the "home" is the caregiver's. In the latter case I should think that the caregiver should make it clear to the discharge planner that their home is NOT available, they cannot provide the necessary care and it would be an unsafe discharge.  But if a legally competent elder demands to be put in a cab to go to their own home.....can a hospital keep a patient against their will? (Absent guardianship, etc.)
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Isthisreallyreal,

As far as the hospital not being able to send someone home, is that across the board everywhere?

I know here they will send people home in a cab if no one comes to pick them up. I wonder if the patient could ask for a cab or the hospital decides on their own that a patient would be okay at home if that would happen even if a parent asks that the patient doesn’t go home.

I guess what I am asking you is does a patient have rights if a family member doesn’t have medical power of attorney?

It can become such a nightmare for people sorting through caring for someone.
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worriedinCali Nov 2019
I think it all depends entirely on the hospital and it’s particular staff. If the elder is of sound mind, the hospital can’t force them to stay, especially if they have their own home to go to. My FIL would have been an “unsafe discharge” as he really couldn’t ambulate, had a chest tube and feeding tube, and was on oxygen and if he wanted to leave the hospital, he had that right, they would not have refused to let him leave. That’s not to say they wouldn’t have also called APS and gotten them involved. But I know that once the hospital had done all they could do for him & it was time to move on to the next step, he was free to go home if he didn’t want to go to a nursing home.
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I say "good for you". Your son is your priority. Other family members are going to need to get involved. This is one reason my Mom went into AL. No help from my brothers. I had a disabled nephew Mom took in to oversee too. I am not a Caregiver.
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Maybe it will, but you'll be more depressed and broken down physically and mentally to stay in the situation you're in.  We may not always like the few options available, but these are all we have.  You've got to maintain your health and sanity, and do what's best for you, which will be best for her, too.

Since your siblings aren't responding, make the decision, and get her in AL as soon as possible.  Let them know your decision, and where you choose.  Ask the AL people about affording it and any financial help available for her.  Pick an AL close to other family members so they, too, can assist and visit her.  After you've visited some ALs, take mom to see your best choice/s so she's involved in it.  Emphasize to mom that it'll be her own new place where she can make friends her own age with activities and meals she likes and the 24/7 help she needs for safety.  Be kind but firm that this is the next step for her and her safety and happiness (and yours!). 

Good luck.
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jjmummert Nov 2019
Amen.
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I totally feel for my mom is 97. I do have caretakers during the but I broke my ankle and couldn't do anything for her for 2 months broke my heart. So my husband had to take care of her when they left. My stepfather past In jan 2019 and was a very sick man for we took care of him for 5 years. I now at 65 neglected my doc visits. I know have herniated disc in my neck and shoulder issues
I have 2 brothers who do nothing and they love locally. 1 hasn't seen her in 2 years 1 stayed with her for a week but has pain management issues and was
homeless and a dangerous situation.
I plan on moving out of state for retirement so I can enjoy some time. And feel so guilty that I'll have to put my mom in an ALF. But what about me and my husband. No one visits her. So how do we do this? I also promised my mom no alf. But there not all like the old nursing homes. I too am stressed and have kids, grandkids and great grandchildren.
Mom needs totally care. One day her mind is there the next day she's talking to herself all night. Has nightmares. Hallucinates, its amusing sometimes. Sometimes she won't eat. She can go to the bathroom and she'll ask but she can not do it own her own
So let me know how you handle your situation and I see there are many of us in the same boat. I know I didn't answer your question but I hope my thoughts have helped!
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Hi my mom is 81. She’s been in memory care since July. I was her caregiver full time for about 3 years. It was way too much. Everything you described, I felt as well. No one person can be on call 24 hours a day. For me , I was always tense, and really didn’t care if I lived or died. This was not me. I never had depression or anxiety prior to her dementia, and my role as her care giver. The best decision I’ve ever made was to get her placed. The nurse who evaluated her, assessed that she has Alzheimer’s with progression. Under no circumstances, could she be left alone for even a short time. She had 3 falls in a relatively short period of time. I couldn’t be with her 24 hours a day. She’s adjusted pretty well. She has a friend. She eats , gets bathed, dressed and has many opportunities to go to activities. She usually doesn’t though. Bottom line, she is where she needs to be, with round the clock care , provided by professionals. She also has a bracelet that would alert the alarm system if she wondered off. I don’t have siblings, but I too started to resent relatives who made suggestions on what I could or should do better , during their annual visit. I have a daughter, who I too felt I neglected ( just a little). Her physician assessed her with Alzheimer’s in June, she was placed by July. Her long term care assessment made by the insurance company, suggested her condition was worse than I ever knew. Good luck, and don’t feel guilty for getting your life back on your terms.
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disgustedtoo Nov 2019
The armchair family members - never lifted a finger to do ANYTHING to help, but know what is best for everyone!

My feeling is if they are so smart, they can take her home with them when their annual visit is done. Or, just leave them there with her! Of course they would probably just leave her there alone, they are just so smart.

Best to just ignore them and do what is best. If all they can do is make stupid suggestions and offer no help, then it isn't in their rights to contribute to any decisions.

(FWIW: while I feel for the staff when mom lives - their job isn't easy, most of us know this and I often commend them for what they do - I had to listen to the guilt trip because mom was having leg pain and this person insisted she should go to the ER. We'd already been down this path several times, including a 4.5 hour agonizing (for me) ER stint. Unless bleeding, broken bones, something clearly obvious, ER isn't going to help. When I told her this, she actually suggested I try a different ER! After the other ER torment (note at in-take she denied having any pain and walked to the scale, etc unaided, yet for most of the 4.5 hours she moaned, wailed, groaned, you'd think she was dying!), I did take her to PCP a few days later, where she also denied pain, and even later to an Ortho (PCP not on board) - Ortho took xrays and said if she were 20 years younger, we'd talk surgery. Her knees are bone-on-bone. She had many times in the past said she needed to get her knees "done" but never did it. Now, at 96 with dementia, there will be no surgery. Visit the day after the call, nurse told me she was okay. I still made appt with pain specialist, to see if trying another injection to potentially ward off any near future "episodes" might be worth a try (ortho did that on our visit.) There's always someone who thinks they know better than you (and rubs it in, implying SHE is more concerned about mom's pain than you are.)
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Depression comes from within a person. What you do doesn’t cause depression for another. You’ve been a valiant caregiver for others, please be one for yourself
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Depression is real. Different situations cause it. It can be the environment or a chemical imbalance. Some people need medication.

No one can prevent someone from having depression. It’s individual to everyone as well. What causes one person to be depressed will not necessarily cause someone else to be.
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Sounds like it is past time for your mom to move to independent or assisted living. Go look at some apartments yourself, then take mom to the two that you've chosen. Get buy in from the siblings ahead of time, but do it whether they agree or not.
Remember, mom's wish to remain at home is, in many ways, an abstract wish and it relies upon you giving up what you wish for. That's not fair.
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Seems like it is time to pass full time caregiving to others - family or paid help. The fact that your parent-child relationship and your health needs are suffering are indicators that your life needs caregiving. Talk with family members about the level of care you are willing to provide and let them know the care tasks that need to be covered. After, getting their help commitments, then turn to paid care. Talk with home health agencies to see how much care is needed for mom and the cost involved. It is generally less expensive for care to be given in mom's home than in a facility.

Side note, many seniors develop depression. Talk to her doctor about the symptoms you have noticed. He/She can get a psych consult or may be able to prescribe medications to help with her symptoms.
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Pasa18 Nov 2019
Thanks Taarna, I've done all the above. Social support for care giving is culturally and socially not a fully considered factor. I believe in care at home and have made mom's home conducive to her needs. Everything is simplified, the home is decluttered, safe, and familiar. In preparation of helpers coming over everything is set up so any task can be done efficiently. But it turns out, I'm the only one who is doing everything. The idea was to delegate some tasks to one other, any other. I've crossed off family members to save myself the grief of having any expectation of help. Others, paid to help, have had their own priorities understandably with regards to better paying opportunities or furthering their lives. Mom's depression is her sadness and partly projection of my stress I realize. There is no pill to fix the lack of community or family support.
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I have learned the hard way through years of experience, rarely will others in the family come to help the one caretaker who carries 99% of the burdens. It is a sad fact of life. Once the toll of handling difficult situations due to mental or physical problems begins to affect you negatively, you must stop it at once. Let them all know so they can't complain you did not tell them. Ask for help but never expect to get it. Then you must find a way to place them so you can live the life YOU deserve. If you don't, you will be slowly destroyed and I doubt you deserve that. Tough but true.
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Davenport Nov 2019
Riley, that was my situation exactly! I knew how common this family dynamic/scenario was. In fact my therapist told me a few years prior to me becoming caretaker this would happen. They did NOTHING, refused to communicate with me, but criticized me with each other (I know, I overheard them the few times they'd be at the house at the same time). Mom refused to hear me when I told her (giggling, "oh, you girls, just get along!"); my dad (RIP) would be HORRIFIED and PISSED if he knew this was going on--their actions are 100% against his values and morals.

I expect them to behave the same when mom passes, with the (modest) estate.

I can't believe they're doing this, but it's true and they are : (

I ranted, and I always feel guilty afterward; but at the same time, it needs to be expressed.
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I do understand you very well since I am the sole care giver to my 97 years old husband. I search for a favorable answer unsuccessfully.what is the answer?Do we jump in the grave with the one we lovingly care for?
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NeedHelpWithMom Nov 2019
Great answer. Thought provoking.
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One thing is a given and that is that you're absolutely right in the fact that you can't continue on like this. Good grief. You need to take care of YOU.
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I found this caregiver burden assessment on this site which is helpful: https://www.agingcare.com/documents/caregiver_burden_assessment.pdf. Two years ago, I was in a different place. Good to have this reference point.
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An additional problem, one of the elephants in the room, is that while IL, AL, MC and NHs each serve a purpose, there are those who will fall through the cracks. I can't say that this mom would be one, as there isn't any real detail about what she can and can't do for herself, but here is the situation:

IL is for those who are still in relatively good health and mobile. Many people don't want to care for a home/property, even if it is a condo or the like. It allows them a place to live, but be independent. It generally is within a facility that allows one to age in place, often providing AL and MC.

AL is for those who are still in somewhat good health, but perhaps less mobile. They may need assistance with various ADLs, such as getting around, meal prep, laundry, bathing, etc., hence "assisted". It is NOT an alternative for a NH or MC.

MC is for those who are no longer competent to be living alone. It should be a safe locked down facility (someone mentioned a LO having a wrist band to notify them if she wanders - really?) Often the same people can have other ADL needs, such as walkers, wheelchairs, etc.

NH is for people who require specialized nursing care. Just having dementia or being confined to a wheelchair doesn't make one a candidate for this. There are many walkers and several wheelchairs in mom's MC place.

There are also smaller home-like places that cater to AL/MC, sometimes both, sometimes one or the other. These are sometimes less expensive and perhaps a little more care-oriented, but not as common (yet.)

Often you might have an elder who is beyond the capability of AL (needs too much assistance - you pay extra over a certain amount of assistance, but at some point it is too much), is not cognitively impaired and not a candidate for a NH. The smaller home-like place might work for them, but they don't seem to be as widespread as the AL/MCs are. You also wouldn't really want to place a person with full mental acuity in with MC residents, so that would limit options.

There really needs to be another level of care in the system, one for people who are still competent, but due to age and/or some infirmities require a lot more assistance than AL or LOs can provide. In care home can be more expensive than a facility, and help is often unreliable or even incompetent, but what choices do we have beyond the above ones? It isn't clear if OP's mom has dementia. If not, it sounds like she would fall into this category - too much for AL, not enough for NH, doesn't need MC, so what do you do with them? They can also refuse and we can't force them! Yet authorities will be quick to point fingers if something bad happens!

The biggest giant flaming pink elephant in the room is the fact that many people cannot afford ANY facility or home aides and a good number of them, although income limited, have incomes over the limit for Medicaid, so they are refused assistance!

The various issues need some kind of resolution. It is taking too much of a toll on people, robbing resources and taking people out of the working world (which will negatively impact them later in their own retirement as well as reduce the workforce!), destroying families in some cases, ruining our health at a time that we cannot afford to do that! It is such a difficult situation we are in.

Some say it is due to medical intervention/living too long, but there are some in mom's place who are only early 60s and healthy - dementia is taking them way before their time! If it keeps increasing like this, we will have more in facilities or home-care than in the work force!
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Pasa18 Nov 2019
Disgustedtoo, yes this it where I'm at. A rock and a hard place because mom borders on the edge of competent and is resistant. She does not qualify for hospice or LTC. Good news is I have two referrals from others of AL small care setting you mentioned and is on my to do list for future reference. With regards to an aunt, I visited local ltc in the area.
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Disgustedtoo thank you for sharing!! I agree 100 percent!!!
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As you (and many of us) have already learned, family members can disappear, become nosy busy-bodies who have all the answers, or actively work against you. There are some good families out there - I have read posts from a few and it is heartening to hear from 'the other side.' It is best to just let them fall by the wayside. Ignore them if they butt in, dismiss them if they are refusing to help in anyway and move on. This is the point where you have to consider yourself an only child, sad as that may sound.

You can't change them or their minds, you can only change how you react and/or deal with what needs to be done. They've not responded, so rather than wasting energy on trying to get them on board, or being angry with them, focus that energy on making a plan and making it work. You have to now do what's best for both of you.

While this 'plan' may involve moving your mom to AL, it sounds like she might not be interested or, worse, be totally against the idea. Our mom wanted nothing to do with moving, but with the dementia my brothers came up with a ruse to get her to move - still angry but she went. This will present some hurdles for you.

Even with dementia, you can't force her to move (or allow people in to help her.) If she doesn't have dementia, all the more important to understand this, because unless she is deemed incompetent, you likely won't be able to get guardianship (even with that, it is often geared towards maintaining as much independence for the person as possible, so you might not get capability/authority to move her!) Your rock|hard place is even worse than ours was!

So, writing off family and planning for if/when she falls again, telling hospital staff she has no care at home, refuses care and refuses to move to AL, AND stressing you can't do the amount of care she needs, hopefully they can find a place for her, but it might not be what either of you want or can afford. It might be good to check out some places, esp if you can find some of those home-like places that seem to be becoming popular. If you check them out, go back at random times to look around and observe, perhaps you could take her to them, to let her see they are NOT the same as NHs, and no where near to being like the NH of yore!
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If no family has thanked you for all you have done for them, I'm going to say "Thank you for all you do. You're awesome." That being said it is time for you to step back and care for yourself as well as your daughter. First, schedule a physical with your primary to get your health on track. If time and finances allow, perhaps a vacation is in order. Or go to attractions in your town. Since there is other family around, I would request a family meeting. At that meeting, I would have a schedule sheet where people can sign up to spend with your mom. Decide ahead of time, how much time you need and on what days. If your mother has funds, how about hiring a caregiver on a limited basis. Contacting your local Area Agencyon Aging may be of benefit in term of programs and services to remove the burden from you.
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