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My mom is in rehab after a stroke. Her discharge date is coming up and she wants to be at home instead of in a facility. (I would vastly prefer a facility, but she completely refuses to be in one, so we're trying this first.) I know the rehab isn't going to discharge her until we have a safe place arranged. I have not begun to set up home care yet and am not even sure where to begin. I'd have to get her a hospital bed as well as set up a place for the nighttime worker to sleep in my mom's large one-bedroom apt. I realize there is no standard amount of time that all this will take,that it varies from person to person, but given that I have a f/t job, are we likely looking at a couple of weeks or longer? My mom is BEGGING me to get her out of the rehab asap and I keep telling her it will take some time to set things up at her home.

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Babalou and Xinabess: Yes, I did understand that. The best solution is generally NOT to release a stroke victim after a rehab stay to their home. Many will need PT and possibly OT.
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Yes, LL, my mom has been in a sub acute rehab facility for over 2 months. Next step is home w/ round the clock care or SNF
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LL, I belive that Xinabess' mom IS in rehab currently. We are talking about her discharge from rehab, either to her home or a long term facility.

One of the fortunate things is , Xina's mom lives in NYC, where 24/7 homecare is covered by Medicaid if one qualifies.
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"She wants to be home" is a BIG NO! Hospitals don't release stroke victims to their homes. They go to the rehab unit of an NH. HELLO!!!!! REALLY?????
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Xina, just to add/clarify to my earlier response based on new responses :):

1. Do not use any of your own money to pay for care - only your mom's.
2. I didn't realize your location and family commitments. Yes, these should be considered first.
3. I do believe you will feel more at peace trying the 24-care option, based on your mom's wishes, and if it doesn't work, at least you can say you did your best.

Let us know how it goes.
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Xina, in my humble view of life, your family and kids come first. My mother spent much of my childhood caring for dying elders in our home. It did not teach me any useful lessons. I did not have the guidance and attention from my mother that i desperately needed, especially as a teenager. I messed up my life rather spectacularly after leaving for college and it took me until after the birth of my second child to get my head straightened out. So, 10 years down the drain.

You have skin in this game...your marriage and your kids. Decide how much you can do and set the limit there. PS, I'm in Brooklyn too!
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xinabess, I remember you wrote that your Mom doesn't have much in assets or income, so whatever you do, do NOT pay for home caregivers out of your own savings. Your Mom would need to pay for this, and maybe this would be the turning point that lets your Mom realize she cannot live at home.... it's a huge cost.

I remember my Dad thought that social security paid for the Agency caregivers.... hmmm, no. Don't know where he got that idea. He was able to deduct the cost off of his taxes [I think]. I now handle all of his finances and that's a part-time job in itself at the beginning sorting through everything.

Oh my gosh, back when my Dad and late Mom lived at their home, I was up and down the roads running errands and going almost weekly to doctor appointments. Then there was groceries... I tried shopping with my own list and with their list, but pulling two grocery carts because a nightmare... I was getting things so mixed up...[sigh].

Thank goodness for Peapod on-line grocery service where they do the shopping and you can either have home delivery for a fee, or curb-side pickup for a smaller fee. Look to see if any local grocery store offers that service.

Oh, I also use Home Instead and have had excellent service. The rates also depend on where you live. Usually a large metro area you will find higher rates.
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Thank you tornadojan. That is all vey helpful and I appreciate it. I will definitely check out Home Instead. I 100 percent DON'T want the home care option. Things like shopping for groceries (which I hadn't even thought of), shopping for anything on a regular basis, managing the aides—none of this is possible for me! I live in Brooklyn; she lives in Manhattan. I have a full time job and kids (teens, but still). The joy of her being in a SNF is that I don't have to think of any of that—no groceries, no supplies, no difficult relationships with aides, etc. But we may have to give the home care a trial run because otherwise my mom is probably going to lose it. However, I am also about to lose it, so who comes first? We have a care plan meeting on Monday. I spoke to the SW today, who said, "The ball is in your court." There's the rub. It is and I don't want it to be. But I suppose having siblings doesn't necessarily make these decisions less fraught.
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Hi, Xina, I am overwhelmed by all the responses, so I can imagine how you feel. I will be as succinct as possible, so please don't feel I am being rude.

1. Go with the 24-hr home care. It sounds like your mom is adamant and, for now at least, it sounds like you are more comfortable with it too. I use Home Instead. The rate is in the neighborhood of $20-$24/hr depending on weekday/weekend/holiday/night. Others have thrown out some prices. We are spending roughly $12,000/month, and that is with me doing a "shift" of 20 hours a week to save on costs and keep everything on track.

2. Like you mom, my mom is in great shape physically, but due to a couple of falls/breaks, must use a wheelchair. She has minor dementia. These two factors call for the 24hr care.

3. My attitude is if you/mom has the money spend it down until it runs out and then going into a different care setting won't be an option. I know of no state where Medicare/the feds pays for 24hr home care. Just bite the bullet and do it.

4. The caregivers at Home Instead are reasonably reliable. If one calls in sick, they - not you - are obligated to arrange coverage. So that is a big advantage and the reason I have stuck with them through some bumpy times.

5. You will still have a lot of responsibility, from paperwork to grocery shopping to emotional support. But I think right now may be the worst time because it is all hitting you at once. (1) Take advantage of the social worker - she should be a resource and I believe they can even send someone out to the home to make recommendations, order any medical equipment, etc. (2) The Home Instead supervisor comes out and sets up a plan of care - they can make some recommendations too. Once you sign up with them they can arrange 24hr care pretty quickly.

Yes, Mom will probably whine and groan whatever the arrangement. But she sounds pretty with it. If you go this route, then you have to be forceful and state unequivocally, You go home and have 24 hr caregivers or you go to a facility. Those are your two options. You decide. And prepare to continue. I have had to do this with my mom periodically and she always backs down.

Having said all this, I think so far the money and effort have paid off. She just went to the dr office - blood pressure was 110/76, oxygen 97%, in a generally cheery mood. I couldn't do it without the Home Instead helpers, although I will give myself some credit too.

Good luck! Let us know how it goes.
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xina, my mother still believes she is able to take care of herself. This is even though she can barely walk, can't manage her medicine, can't drive, can't maintain her house, is unable to understand people who call her on the phone. The only things she can do is fix her breakfast and wash her clothes. She is able to do things through rote memory. If I started fixing her breakfast for her, she would quickly lose the ability to do it.

Although she is severely limited mentally and physically, she says and believes that she can take care of herself if I go on a two-week vacation. I know leaving her alone for that long would be an absolute disaster, pretty much like leaving a young child alone. My mother is diabetic, so it isn't a possibility I can even entertain. When we know their limitations, we have to make or encourage choices that are in their best interest, even if it is not what they choose for themselves.

I have a feeling your life is going to be very busy filling in the spaces that the hired caregivers don't cover. I admire what you are doing in trying to make your mother as content as possible. I hope that you are able to provide the things she needs without driving yourself crazy. If it becomes too much, you can always see about finding her a good facility. Please let us know how it is going as you work things through.
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She had a psych consult and all he said was that she didn't seem to need antidepressants. I think that since she's been there, she has become more confused. She knows what day it is and a million other things, but she has totally dissociated when it comes to her limitations and care needs. It's obviously a coping mechanism.
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Xina, didn't she have a psych consult while in rehab? What did the psychiatrist say?
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Whatever the cause of her belief that she can function alone in her home with no aid, even though, she can't walk, you may be unlikely to convince her of anything. Often people who have dementia cannot be convinced or persuaded. They are not able to process information properly. Begging, pleading, reasoning are not very effective, but if that's the case, you'll get to that point.

I think of it this way. If your 4 year old told you that they were fine to live alone in their own house without assistance or supervision, how would you respond? No matter how determined they might be, would it be feasible?

Some people may be able to work a crossword puzzle, but not be able to plan a meal, operate a stove or bathe themselves. I think that the professionals who handle home assessments will be able to assist you. That and the financial aspects should sort a lot of things out.
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I have to ask about that. She is remarkably sharp in some ways, but obviously something is off in her thinking. 24/7 care is non-negotiable, that is clear. It's getting her to accept that and not make trouble for a home aide. Ugh!
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Xinabess, has she been evaluated for cognitive decline? Sometimes that happens right after a fall, injury of hospitalization. Maybe, she was functioning pretty well before, but now, she may not be thinking clearly. No matter how insistent a person may be, if they cannot walk and they order their caregiver out of the house, they can't be left alone. Delusions are not uncommon with cognitive decline.
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CTTN, If there's no care plan in place, they will keep her where she is until we have something arranged. I am meeting with them soon and yes, her bf is very helpful. The biggest problem we both face is my mom's unwillingness to accept her limitations and need for 24/7 care. She is going to hate being home with an aide there all the time, which is why I would prefer to keep her in a SNF and save myself the trouble of getting home care. She will be more independent at home, not physically, but she'll be able to call the shots. So if she wants to fire the aide or insists she can live alone, it's going to just suck for me.
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What happens if your mother is ready to be discharged, and you don't have a care plan in place yet? Is there some sort of deadline they give you to get it in order?

Is your mother's BF going to be any help?
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I checked caregiver rates on this site; it lists average costs in the Bronx at $19.00/hour. (NYC is weird this way; lots of stuff is cheaper here than elsewhere. I've never figured out why, but I stay). You can click on the Find Care link here and get connected to agencies so that you can ask lots of questions.

Get a file folder, or a notebook. My little notebook, with mom's insurance cards, doc's phone numbers, etc,is always in my bag, along with a precis of her medical history.
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Xina, it depends on the Agency themselves what they pay their caregivers. This is a very competitive business.

Don't forget, a caregiving Agency is licensed, bonded, insured, and offer workman's comp for their employees. The Agency has to pay all the payroll taxes. Most have office overhead to pay [rent, supplies,utilities, advertising, etc], plus have employees who do the scheduling every day of the week, plus weekends, and work on holidays. Some Agencies offer sick days and vacation days. Some offer continuing education. And some Agencies offer a higher pay to caregivers who are LPN's or RN's. Thus profits are needed to pay for such expenses.

As for waiting lists for a room in a continuing care facility, my Dad is currently on a waiting list for a memory care facility, it is a refundable $1k fee if he doesn't use it. Theses fees can vary depending on supply and demand in your area.
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I these are questions for the owners of the agencies you're calling.
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More questions about 24/7 home care: How much authority do these caregivers typically have over the daily schedule and activities? What if my mom wants a few drinks, for example? (She drinks a lot.) Will the caregiver do anything to limit those? Who cleans the sheets, if, for example, if my mother soils them?

Oh, how I wish I could keep her in a SNF! She will not have it. And then if she's at home and the SNF option seems better, how will we get her into one since they all have waiting lists? I was awake all night thinking of how to cope with all of this!
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Why am I being told that most of these caregivers are paid roughly $15/hr? Legit ones, from agencies.
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Xina, if your Mom insists on having home care, plan ahead as some caregiving Agencies will charge an extra hourly fee for scheduling caregivers the last minute. Then the Agency will go back to their regular hourly fee the following week, depending on how they work their rates.

The Agency I use for my Dad, they charge $30/hr weekdays and $33/hr on weekends. Yikes, that's is very expensive. Dad is billed every two weeks and the payment is pulled from Dad's checking account, so I need to make sure he has enough available.

As Babalou mentioned above, make sure your Mom knows about the cost involved. I am lucky that my Dad is very careful about cost, and now he is willing to move to an one room Assisted Living/Memory Care because it would save him money. That way he wouldn't need 24 hour care at his Independent Living apartment.
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I will start with the SW at the rehab/SNF. The lawyer I saw is going to help with the Medicaid application. It is overwhelming!! Like who is in charge of keeping supplies (depends, etc) stocked? So much to think about. How does anyone pull off 24/7 home care?? My lawyer explained that in terms of keeping my mom's assets, home care allows us to keep more and SNF less. I don't remember why. But, boy, I wish I could get my mom to agree to SNF. Sigh.
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So, Std, does your agency cover NYC, and do you accept Medicaid?

My Aunt and Uncle, he with dementia and she with advanced heart disease and mobility problems, stayed at home successully with 24/7 aides until my aunt died. But they were millionaires.
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"I realize saying "no" is very difficult, because if you waver, you will be the full-time caregiver." freqflyer I agree; this is what will happen. Maybe it's your mom's real plan -- to be in your house/apt. being cared for by you.

"If time is an issue for setting up all of the home care, then I can't imagine how much more time supervising how things are going on in her home, once she arrives would be." Sunnygirl1 Exactly. Sounds like your mother would be complaining about the caregivers. And, as someone already mentioned, you will be on the hook if someone doesn't show up.

Now's your best time to act, since your mother is in rehab. If you go against your mother's wishes (facility for her), what is the worst that can happen? I can well figure out what the worst will be if you DO NOT keep her in a facility.
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I would make sure you get an agency that will work for Medicaid rates after mom's assets are used up.
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P.S. The agency was able to start right away however we were clients already.
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My mom had 24/7 home care. All paid for out of pocket. Night caregivers are not paid to sleep. Find a home caregiving agency. I used Home Instead. Talk to them. They will answer all your questions and help with everything. It cost us $10K a month in Alabama. All out of pocket. Medicare covered none of it. Best wishes and sincere hugs for handling this difficult and stressful care for your mom. She is lucky to have you.
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Xina, has the discharge team approached YOU about this? If they haven't, I'd let it go until they do. If mom is pestering you say " I dont know mom, that's up to the doctor when you get discharged". Let her pester them!.

The other question, of course, is how mom is going to pay for home care. It's about $25 per hour. Until Medicaid gets approved, i guess she is going to have to pay privately. So each day would be $600 or 4200 per week. (That's the way I'd present it to her).

The thing that took a LONG time to sink in for us? The fact that mom WANTED something didn't mean it could be done, or that it was the best thing for her. And sometimes, rather than pushing back, you just have to let that sink in, both for you and for mom.
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