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

What I had to do for my parent is that I called a caregiver Agency and set up 3 shifts of caregivers per day. The night shift does NOT sleep, that person needs to stay awake to listen to see if your Mom gets out of bed or if she needs any type of help.

Since your Mom refuses to go to a facility [which is common for those elders who are much older as they don't realize that today's facilities are much nicer then what they might have seen back a half century ago], you would need to set up her condo like it was a nursing home.

You already have on your list a hospital bed. What about bathroom needs? Is your Mom able to walk on her own to use the bathroom? Would she need a potty chair in her room. Would she need someone to lift her from the bed to a wheelchair to the toilet? Would someone be able to lift her? Her bathroom might need grab bars on the walls, the landlord would need to have someone install those. Put on your list a shower chair, and toilet bars if Mom has trouble getting up off of the toilet. What a about a wheelchair? Would it be able to go through the door openings?

If you hire a caregiver who is not from an Agency, then you Mom would need to add a "workman's comp" rider to her renter's insurance, this rider is needed in case a caregiver gets hurt on the job [back injuries are the norm]. If hired from an Agency, the Agency is usually licensed, bonded, insured, and have their own workman comp rider.

Oh my gosh, there is so much to think about.

Does your mother have adequate funds to pay for 24/7 care? If not, are you willing and able to pay for it? Do you know how much it costs?

xina, I just found a previous post you had written https://www.agingcare.com/questions/how-do-i-choose-between-home-care-and-nursing-home-care-for-mom-206229.htm and I honestly believe your Mom needs to be in a skilled nursing home at this point in time.

When my Dad had around the clock care due to him being a fall risk because of all the stairs in him home, it was costing him over $20k per month, yes per month, not counting the cost of maintaining a large home, groceries, yard work, etc. If he had continued that route it would have cost him $240k per year on just care alone.

I want her to be in a SNF too! But she is cognizant and tells me every single day (numerous times) that she must get out of there and go home. Fortunately, she has no steps and her building is not only wheelchair-friendly, but there are so many elderly people in the building that it's a NORC (Naturally Occurring Retirement Community.) There is a social worker on staff as well as numerous activities for the elderly. So that is somewhat comforting.

As for how to pay, I have spoken with an elder lawyer. My mom doesn't have much in assets, and her income is poverty-level, so she assured me that she could put 60 percent of my mom's assets into a trust, so it's safe. The other 40 percent would be used for her care, and then Medicaid would cover it.

Believe me, I wish I could keep her in a SNF. But she will not have it and I really can't force her to do something she can't bear doing. What I'm thinking is that we'll do home care for now and see how it goes. If it becomes evident that she needs a SNF, then I'll put her in one. In the meantime, I will get her on waiting lists at the SNFs, because they ALL have them.

There are some holes in the thinking here. The biggest one is that Medicaid won't pay 24/7 caregiving service in the home. Programs such as PACE that work with people aging in place do work with Medicaid or Medicare, but there is a limit on caregiving services. The clients are expected to be able to live independently or with the help of a family caregiver. Medicaid will assist with payment for low-income individuals that enter nursing facilities.

What kind of trust was set up?

I would be interested to know how Medicaid would cover at home care for a patient around the clock in their home. There are no services like that, that am aware of in my state. I was informed that PACE may provide assistance, but it's to the family or privately retained caregivers and is not a main source of caregiving. I think I would get the details on how you expect that to work in advance.

If there were no other option, then mother might be better able to accept the idea of the NH. Have you considered that her expectations are unreasonable? With you working full time, it sounds very involved and very expensive for her to come home. Many people cannot afford in-home, around the clock outside help come into the home.

I recall that my cousin was completely convinced that she could live at home with the help of neighbors, but in reality, she was not able to prepare food, use her telephone, stove, washer or bathe on her own. Her expectations were just not based on reality.

The ability does not always match the belief the senior may have. I think I might have a NH lined up, just in case she needs to be admitted there quickly. Keep in mind that she'll have to get her Medicaid application in and approved if she will be relying on it for the costs.

Xina, are you in NYC (people DO get 24//7 medicaid covered care here).

Also, are you working with the therapy/discharge team on setting up home care.? They should be able to recommend agencies. Doctor at the rehab needs to script homecare/hospital bed, etc.

I helped set this up for an elderly friend several years ago. Be prepared for your life to change. Because she's not in a facility, YOU are the backup....when one shift doesnt show up, wnen there are bedbugs, when she decides to fire all the caregivers.

Xina, one more thing...there are waiting lists and then there is discharge from one facility to another. Discharge from a rehab facility trumps the waiting lists.

It's much easier to get mom into a facility now and then get her discharged home at a later date if that is deemed reasonable. She can be discharged to a facility " medicaid pending".

Just be awsre that you are going to be on call from here on in. I would protect my own physical and mental health and say " no, Mom, i can't possibly set up home care. Too much responsibilty ends up on my shoulders and there is only one of me. What if I become ill?"

I appreciate all the input, really I do (and, yes, my mother lives in NYC) but those of you who are trying to convince me to put my mom in a SNF are preaching to the choir! I am ALL FOR the SNF option, but my mother is chomping at the bit to go home. What am I supposed to do? Tell her, well, it doesn't matter what you want, you're going to a home! She's on the ball in every way except when it comes to accepting her current limitations. The only thing she will (sort of) agree to is 24/7 home care, and even that, understandably, feels very strange to someone who has lived alone for 35 years. I have to work with her as much as possible (don't I?) and not force her to stay in a home right now. She is desperate to be back in her familiar apartment. What am I supposed to do? Believe me, I do not want to be the one the aide calls in the middle of the night. I do not want to arrange any aspect of home care, but I also cannot simply tell my mother she has 0.00 control or input into how she lives for now. She is still a (mostly) cognitively-intact human being whom I love dearly and who is having an extremely hard time accepting how dramatically she has been affected by the stroke. To force her to stay in a SNF would kill her, honestly. That said, she may realize when she's home that having someone there 24/7 is just as bad as the SNF concept.

She is in a rehab place that also has longterm care. They have a waiting list for that. But they will keep her on their rehab floor indefinitely (private pay when it officially becomes longterm care until she gets Medicaid). They can't throw her out until we have either found a spot in a SNF or have arranged home care. There are many people occupying rooms where she is now who are definitely not getting rehab, but waiting for official longterm beds to open up.

The whole thing is becoming a nightmare. The one bright spot is that today she seems to have grasped how to operate the Kindle Fire I bought her so she can read books, despite having only one hand that works.

One word of warning about trusts. There are several types. Revocable trusts are not exempt from Medicaid, so would have to be spent down to qualify. Irrevocable trusts can result in penalties if someone applies for Medicaid for LTC within 5 years. There are other trusts, but I am not knowledgeable about them. Be sure the attorney knows about trusts and Medicaid if he/she plans to set one up for your mother.

Xina, I understand ( and i think everyone here does) that we're preaching to the choir. (And obtw, you're incredibly fortunate that you live where you do. Medicaid doesn't cover 24/7 care inhome anywhere else that i know of).

My big question is, what do the discharge folks say? Are they helping you set up home care? As i posted previously, the doc has to script all this (services, hospital bed, therapy) in order for it to happen.

How is mom's grocery shopping going to get done? Is she going to accept Meals on Wheels? Is she going to be cranky hecause the aide doesn't cook the way she's used to? How will she get to Doctor appointments? Has she been using Access a Ride, or does that need to be set up?

I think the chances of home care working depend a lot on how flexible your mom is willing to be about a lot of issues. And frankly, she doesn't sound very flexible.

If you haven't already, make an appointment to sit diwn with the social worker at the facility to get an idea of what YOU need to arrange, which agencies to call, etc. Also, talk to the SW in your mom's complex and see what she suggests. She almost certainly knows which agencies already have aides working there,who is reliable and what resources you can access.

You sound like a wonderful daug hter and your mom is VERY lucky to have you in her corner. And i do understand that mom wants to go home. My elderly friend was the same way, and the three of us ( my ex, his wife and to a very minor extent I) were able to make it happen. But frankly, it was Heck on wheels.

I was curious about Medicaid paying for in-home help, also (beyond a very few hours/week). I found this site, which has a state-by-state list of services Medicaid will pay for (not vouching for its accuracy; just found it in Google search).

payingforseniorcare site

NY state also has a site that provides what services they offer from in home care for those who qualify. I found it quite confusing. It's a wonderful benefit for those who qualify, but, I found it difficult to figure out the details. I would certainly seek out someone who knows the rules, requirements, etc. very well. ASAP, since, they are likely to require application approval. And if you have to see an attorney to set up Trusts, well....it's a lot to get accomplished. I'd make sure the attorney has taken care of everything in advance. I recently read a post around here where a woman had retained an attorney to prepare her mother's Medicaid application, submit documents, etc.

If you don't want to be the person who tells mom that it's not feasible for her to come home right away, then why not have the social worker or whoever is in charge of her discharge do it? When they learn that no one is there to provide around the clock care yet, they can figure it out and tell her what the truth is.

I want to second what Sunnygirl has to say about having the SW talk to your mom. And Xina, if your mom is compis mentis, as you say she is, then why isn't SHE setting up home care?

For me, the BEST thing about the fact that my mom is getting professional care in a SNF is that there are doctors on site. She is seen by:
Dermatology, Wound care, optometry, podiatry, audiology, dentistry, behavioral health and a geriatric internist. Also, there are APRNs there everyday should a health issue arise that needs to be brought to the attention of one of those folks.

Once again, I WISH I could keep my mom in an SNF. Please don't keep reminding me why this is the best option, because I agree 100 percent! But she refuses to stay in one and I don't want to be in the position of "putting her in a nursing home" right now. Not sure how she would set up home care on her own though, especially since she doesn't think she needs it.What would she do, exactly? She is being so passive in general. I left a voicemail for the SW to talk to her about it, but so far it hasn't happened.

I am completely overwhelmed and ready to crack at this point. I try to explain to my mom that I have 300 other things to do besides set up home care for her right now, but all she's thinking about is when is she going home, when is she going home, when is she going home. I feel like getting on the next plane to Tahiti right now. I'm sure you all can relate!

Xina, I'm 9so sorry if I/we are stressing you out.

If your mom isnt competent to set up home care on her own, she isn't fully in charge, is shhe? You have some say here. One of the hardest things i EVER did in my life was to tell my mom " i can't do this anymore", i.e., leave work 3 days running to dash from Bay Ridge Brooklyn to Westchester. For an imaginary emergency. (Youre a New Yorker, so you know just how awful the Gowanus is).

No mom, that's not possible. Everyone seems to think that living anywhere other than home is going to kill their parent. Well, at least in my case, it didn't.

Il made mom more independent. She then had a stroke and ended up in a NH. She's still going pretty strong, 3 years after the surgery to repair her broken hip that was convinced she wouldnt survive.

Learning to say "no" to a parent is hard. But there are times it has to be done.

I'm sorry, I'm sure I'm just stressing you out further. As i suggested earlier, take a few days off. Doing that when my mom was delusional in subacute rehab was the best decision i ever made.

Xina, what is hard is allowing a parent to find out on their own that they can't manage by themselves, that they really do need help. You want that parent to learn but not hurt themselves in the mean time. It's a crazy balancing act.

Make a list of everything that needs to be done. Tell Mom she will need this and that. And if she crosses off something from that list, then she is on her own regarding that certain matter... you do not substitute yourself. I realize saying "no" is very difficult, because if you waver, you will be the full-time caregiver. And as I already know for myself, not everyone is cut out to do that job.

I am indeed getting to that point where I want to tell her I can't manage everything for her. Just today it seems to be sinking in that she can't stand or walk. She was making great progress, but now her muscles on the affected side seem to be clenching up and making it much harder.

Still, Babalou, I'm not sure how my mom could set up her own home care. She's in a room in a nursing home. I'm not even sure where to start--calling an agency?

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. Maybe someone who has had 24/7 inhome care can share their experiences.

Do you know if the in home caregivers provided by Medicaid also prepare the meals, change linen, shop for groceries, do laundry, administer meds, etc.?

Xina, i would start by asking the facility social worker that question. "So, mom's discharge date is comimh up. Mom wants to be care for at home. How do i go about setting up home care". Have you started her Medicaid application yet? You need to get hold of 5 years of banking statements for starts, from what i understamd.

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.

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.

P.S. The agency was able to start right away however we were clients already.

I would make sure you get an agency that will work for Medicaid rates after mom's assets are used up.

"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.

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.

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.

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.

Why am I being told that most of these caregivers are paid roughly $15/hr? Legit ones, from agencies.

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!