How long does it typically take to set up 24/7 home care?
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.
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.
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.
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.
What kind of trust was set up?
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.
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.
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?"
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.
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.
payingforseniorcare site
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.
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.
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!
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.
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.
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?
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.?
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.
"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.
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.
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.
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!