How long does it typically take to set up 24/7 home care?

I these are questions for the owners of the agencies you're calling.

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.

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.

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?

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.

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.

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!

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.

Xina, didn't she have a psych consult while in rehab? What did the psychiatrist say?

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.

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.

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.

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.

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.

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!

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.

"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?????

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.

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

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.