My mom is getting out of rehab soon from a recent hospital visit from getting sick. Prior to that hospital visit, she was falling all the time which prompted a 24/7 care service which we had for several months. She has Alzheimer's diagnosis about 1 1/2 year ago and denies her illness, rather won't accept it, and any of the physical alignments (Parkinson, drop foot, inability to walk, spinal stensois, degenerate disc's, PAD and coronary artery, chronic UTI's) .
She is a very stubborn woman and it's either her way or the highway. However, she does not know the care services are private pay, had to tell her the government was paying for it (it was the only way she would accept caregivers).
Met with an Nation Wide 24/7 care agency regarding the care services and I mentioned all the troubles we had with previously with caretakers, at the home. The person (owner & director of nation wide agency franchase) met my mom in rehab and my mom was extremely angry cause she just wanted to be discharged immediately.
Today I contacted the agency for my mom's assessment and hire for 24/7 care, but was told our agency isn't a fit your mom. Further explanation from agency stated that my mom and I are not on the same "page" for caregiving.
My mom thinks she can do for herself, but in reality she can't and hasn't really accepted any of her limitations or aging.
My mom doesn't think she requires 24/7 care but I do for her own safety and health. What's your feedback on an care taking agency who tells you your not a "good fit" for their services.. What a joke... now scrambling to find another agency.
I think I might have mentioned too much about other caretakers in a negative way.
If the agency can not find aides willing to work with your mother, they can not force the aides to work with her.
Part II
To sum it up, the Rolling Stones said it best: "You can't always get what you want, but you always get what you need."
Given that you cannot seem to get 24/7 services AND even if you could mom won't accept them/allow them in, you really only have two choices left:
- she moves to a facility or
- you take her in yourself and provide the care she needs.
None of the options fit into your scenario of keeping mom in her own home. As nice as that would be, sometimes it isn't possible. I do NOT believe that regular AL would be sufficient (it is more intended for someone who is able to self maintain with perhaps some minimal assistance.) I also believe that a skilled nursing home would be overkill at this time (based on what you have said.) A memory care unit would be better. Our mom's fee includes up to 1 hour of personal care and so far she really has not needed that much (2 years to date since she moved in.) Every facility is different, so you would need to explore to see what they each offer.
There are other considerations. Do you or anyone else have DPOA (medical and financial)? IF not, her level of cognitive impairment could prevent anyone from getting this in place now (she must be deemed competent and agree to setting it up.) If she is not deemed competent enough to do this, you would have to apply for guardianship/stewardship via the courts - expensive and could be nasty (if mom is as hard-headed as you imply, she WILL fight this!) Does mom have assets to pay for a facility, an attorney, the court fees if needed?
Our goal was to keep mom in her condo as long as possible. None of us lived close enough to check on her often enough (best was maybe once/week if we could share the task.) She was adamant that she would not move to any AL or in with one of us (which suited me fine, I know I could not care for her.) It has been 2 years now. The first 9 months or so she hounded my younger brother to take her back to her condo. That shifted to her previous address, and she has associated that address with her mother. Even today, after ortho visit, when I was about to head out, she asked if I had her mother's phone number (not with me mom...) and then said she would have to call my brother later to come take her home. So, it does not ever go away. Focus can be shifted by those who know how and it will be forgotten until later.
You really are going to have to make that hard decision (another post you made sounds like everyone but that one sister who wants the money is already on board.) Another consideration is that money - 24/7 care will likely be MUCH more expensive than a facility. The day shift was $20/hour at the time we tried this. Off shifts and weekends will likely be more, but just using $20/hr, that is over $175K per year! Add in the cost of off-shift, nights, weekends and holidays... yikes!
I'm splitting my post to cover the last comment I read from you first (may be too late now, just saw it.)
I still think, based on your initial post and follow up responses, that you are not looking at the big picture.
This one is particularly disturbing:
"My mom is being discharge from rehab center tomorrow, and they are providing a script for in home PT. I do not have 24/7 care covered yet and the rehab center stated she could stay there if I "private-pay" It's a mess.... Her care has been repetitive circles for a year now, in and out of hospital, then re-hab then care at home and every time getting harder. I know just wait it will be worse...how can you keep it together and not break"
I find it hard to believe that they would discharge her to home if the 24/7 care is NOT in place. Our mom was already in a locked down facility, yet they still tested her to determine if it was safe to discharge her from the ER!!! Your mom: In and out of hospital. In and out of rehab. On again off again home care... EVERY TIME GETTING HARDER (Your words!) Your mom will likely NEVER agree to AL. YOU have to understand what is happening and do what is BEST for mom - not what she wants or what you WANT, but what she NEEDS, and that is a safe environment to live in. Will you feel guilty? Sure. Will you feel that you let mom down? Absolutely. But you can get over those. Can you get over guilt and let down if something happens to your mother, should you give in and let her go home with no care available? Possibly, but it will be harder.
Something else to consider - while not all facilities are the same, everyone needs to understand that ALs of today are NOT the nursing homes of the past!!! Mom's Canadian relatives stopped by on their way home from FL and were immensely pleased with mom's place!!! Nursing homes are not as "homey" and are more for those who need skilled nursing (doesn't appear your mom does), but even they are NOT like they used to be! Check some out, you might be surprised (but again, not all are the same, so check multiple places.) I avoided the ones that require a big chunk of money up front - what do they do with that, since it isn't used to pay down the fee??? I would also be leery of some of the "for profit" places, as profit is considered over care sometimes. One brother quoted a price less than one half of what we are paying, but it is an a la carte system, which would have based that price just on the room and increased the cost based on food, cleaning, laundry, personal care, etc etc. We found a newly rebuilt non-profit place that had previously been endowed. Cost was a little less than another newly opened site, but the setup, view and rooms (bedrooms, sitting/tv areas, common sitting areas, garden, dining area) were MUCH better.
As for accepting her, needs would be considered and additional costs may be factored in, depending on how much "hands-on" care she really needs, but it will likely be much less cost than in-home care 24/7. Unless she is completely unmanageable (even with a small amount of medication), places could turn you down, but how would they know without trying?
See my next post (hopefully it will fit in one!) Not happening, so I plan to "reply" to this message, in THREE parts...
PART Ia:
This decision we had to make is what initially brought me to this site. I had been researching dementia, checking out places, working out the logistics and plans, etc. Since we had settled on this place she is at now, we ran into a problem - Elder Atty says we cannot drag her out of her house (figure of speech), but facility says no committals, which guardianship implied. ARGH! Can't take her out, can't have her taken out, she won't move anywhere, what are we supposed to do? What the staff told us to do is to get her there, then they would work on her (keeping her busy, changing focus away from leaving, etc). They also utilized a very small dose of Lorazepam (never refilled, so it was short-lived) to alleviate any issues - just enough to take the edge off but not enough to dope her up. This is something you may or may not need. We currently have it now with "as needed", because a UTI can send someone with dementia off the deep end! OFF she went, of course on a Friday night, no access to doc until Monday. Brothers used some subterfuge, but in your case you can say the decision was made by the rehab facility/doctors. No 24/7, no go home.
How about moving mom into AL? Is that an option?
"She is a very stubborn woman and it's either her way or the highway. However, she does not know the care services are private pay, had to tell her the government was paying for it (it was the only way she would accept caregivers)."
and
"My mom thinks she can do for herself, but in reality she can't and hasn't really accepted any of her limitations or aging."
Her mantra was "I'm independent." "I can cook." "I can take care of myself." We hired staff to come in once/day for an hour only, mainly to ensure she took her meds from a timed dispenser and otherwise just check on her, as she was able to do most things (cooking? no way. at this point it was frozen dinners and boxed snacks.) We also told her that someone (MediCare or VA) was paying for this. Eventually when she asked about how the facility we moved her to was paid, we just said the VA covers it. No need to tell her otherwise!
However, our mother did not have all the issues you have listed. Mainly mom developed dementia, which impaired her short-term memory, and led to problems following through (cooking/finances) correctly and kind of self-isolating. Are you talking in-home care? If she refuses to let them in, there isn't much you or they can do. Our plan was to increase help as needed, but after a few months she refused to let them in. They even brought in their "expert" at getting clients to understand - that woman was lucky mom would not have been able to toss her out the door!! Your mom certainly sounds like she needs 24/7 care and if she won't let anyone in, you will have to consider a facility,
That said, being stubborn and "independent", mom also would not consider moving to AL of any kind. In the end we had to "trick" her. She developed cellulitis just before the planned move, and one brother typed up a letter from "elder services" at the hospital where she was treated (ER/outpatient only) saying she goes to the place we selected or they will place her. Mad as a wet hen, but she reluctantly let the brothers move her. For 9+ months after she hounded that brother to take her back to her condo - never asked me thankfully. Then she stepped back in time a bit (!!) and became focused on the house they lived in previously (about 24 years ago.)
For your mom, this decision can be taken out of her and your hands. The rehab should be doing an assessment and if they feel she cannot be discharged to her home without 24/7 services, and those services are not available, they can deny discharge.
I would seriously consider finding a safe place for her and have her moved directly from rehab to the facility (assumption is you would not be taking her in, which sounds like it would be a disaster even if you wanted to do this!) Once you find a place and set it up, you can use some kind of transport system to transfer her from rehab to the facility (it'll cost, but again, then the onus is not on YOU!)
If she won't accept 24/7 care, can she survive with 12 hrs a day? Maybe family can step in for one day a week?
On Friday, my sister and I met with an "elder advocate" who has agreed to be the "bad guy" in telling Mom she can no longer make decisions for herself. This advocate told us that if a State Protective Services agent found her in the state she's in, with the wreck her house is, that she would be found to be self-negligent and would become a ward of the state (Fla.). We are paying this advocate about $1,500 from Mom's estate to walk us through the process of a visit to the doc this coming Friday, which will result in a declaration of incompetence, hospitalization for a min of 3 days which will trigger Medicare-paid rehab, and eventually a move to a memory care facility. Through the advocate, we are working with a senior housing specialist who has been in our local market for 30+ years doing this job. We have complete faith they will walk us through this horrifying process. We are lucky in that Mom's estate can afford to pay the higher fee it will take to get someone to accept her - as difficult as she is. Though oddly Mom thinks the govt should pay for "old people" when they have to go to nursing homes.
Our situations sound so much alike. And I understand the facility's saying there wasn't a "good fit." Workers at these places shouldn't have to put up with brutal treatment from residents. The indignation the needful residents experience is understandable, unfortunate, but unchangeable. They don't suddenly turn around one day and say "Oh, honey, you were right. I'm so happy here." People who think that are naive. This is a tooth-and-nail battle in which no one wins. I wish for you luck and peace. And eventually, happiness again.
No one has said anything about her being a vulnerable adult. If the hospital or rehab declares she needs 24x7 cares, and you cannot find an agency, then she should be placed in a Skilled Nursing Facility. Her going home without that level of care puts her in imminent risk and danger. You should be able to get emergency guardianship by going down that path and work with a probate attorney and the county to get it in place in just a few days.
There are many memory care facilities that can accept the more challenging clients but you have to ask.
You may also have the opportunity to work with your mom to say it is either home care and you have to be “nice” to them or we will have to move into a facility. As another writer stated, verbal abuse is hard on the CG despite alll their training, I believe she said she lasted longer than anyone prior.
Good luck and try the route of emergency guardianship as it sounds like you need to have some level of say and control.
There is one common thread between the two of us:
We both want her to stay in her own home.
having the police show up because mom was in the street screaming for the neighbors to help as someone’s in the house is just one of many moments I’d rather not have experienced
even now, immobile and needing to be hand fed most of the time, mom suggested the other day that her least favorite caregiver leave as she wasn’t needed
have you thought about assisted living for her?
I have been to an attorney about guardianship, who told me 3 months ago, it was pre-mature to file for guardianship and by the way my mom will fight that to it's fullest extent.
My mom knows she outvotes me and has been using that to her advantage, (comment from my sister).
There have been other situations, where police have been called to the house while having a caretaker with her since she refused to go to hospital after a fall -(she was on plavix and asprin- potential bleed out situation needed cat scans). In fact, one time the police told us they will not be responding to our calls
anylonger that day- she had fallen twice that day.
I have been through the wringer with her....
Your options are:
get it in writing, take the statements and assessments back to the attorney, and begin your guardianship application; bearing in mind that even if she isn't successful in opposing you in court your mother will still oppose you everywhere else to her last breath, which might lead you to wonder whether the safety you're imposing on her is really worth the battle;
or
respect her wishes and wait for the train wreck. When that happens and it's an emergency situation your mother won't have any options at all about what care she receives - she'll get what she's given - but she may also not care very much by then.
I do appreciate that neither of these options is attractive or fair on you. But then again, you're not doing this for you, you're doing it for her -aren't you? Or else what is the point? Why on earth would you bother?
For which key reason, I think you'll find it less stressful if you try to align yourself with what she wants instead of being in direct opposition.
So, suppose (hypothetically) that you take as your starting point "mother's view is that she does not need and does not want 24/7 attendance" and start pushing that line. Try even saying it to your mother: "of course you don't need people around all the time, do you?" "I respect that you would much prefer to be on your own, so we will arrange that as far as possible." Crumbs! - how ironic would it be if she became indignant at your apparent lack of concern, and reverse psychology came into play?
Dreaming aside: let's take your mother's view as the starting point. You are presumably talking to the discharge team at rehab, are you?
One lady eventually moved under protest into an excellent continuing care facility whose experienced and highly trained staff were made bullet-proof by first rate management. She was thus able to slander her caregivers and family members in safety and comfort and to her heart's content until the day she died.
The other lady, happily still with us, is in the care of a reputable agency - about the fourth the family has tried - who have looked on her as a challenge. Over the last three years or so they have put together a team and are extremely selective about who they assign to her; two or three individuals rotate shifts and live in from Sunday evenings to Saturday mornings. Over weekends, the lady goes to one of her children's homes to visit. I quail to think what the service costs, but it will not be less than $1200 per week and is probably nearer $1500. Note: this lady does not need any form of personal care and is in good physical health. And on a personal note, I don't happen to agree that she's demented, either. Just... a bit of a handful, you might say.
So I sympathise with all concerned in your situation. With the agencies, whose job is not easy. With you, of course, because you must be frantic. And with your mother, because when I look through her eyes I can feel her resentment of interference and intrusion, and I know I wouldn't like it any more than she does.
So where next? You say: "My mom doesn't think she requires 24/7 care but I do for her own safety and health."
Okay. You have a diagnosis of Alzheimer's Disease from, what, 2017? - plus a range of other major issues. Until that diagnosis develops into a formal assessment that your mother lacks legal competence because of her mental incapacity, though, your mother outvotes you. So what you need is allies. Who else agrees that your mother needs 24/7 care? Who is on your side of the page?
my mom was the same, and I tried more than one agency and frankly, mom's inability to accept help in the home became the reason I had to place her in memory care
even if you get one, two or three caregivers, it is nearly impossible to cover 24/7 care
they get sick, have small kids that get sick, and the agency can't cover the shifts
my suggestion is that you begin bringing in a caregiver to be with her for 4 hours at a time while she's in rehab, and hopefully one or two can work with her and will be able to go home with her plus you'll be able to observe them beforehand
I've used the same family owned agency for over three years, but it took about a year to get a good fit of 3- to 4 caregivers who help mom at her facility
My inlaws had been evacuated due to a hurricane.
They both wound up in an ALF and then a hospital. About six weeks later they were to be transferred back to their home town. I had things arranged for them both to go to a NH for rehab. I had covered with the admissions folks all they had been through and stressed that I didn’t want FIL left in a wheelchair all day, that he was a fall risk etc. All the papers had been faxed and approved.
I get a call at 5 pm, letting me know the facility would not take them after all. They were coming by ambulance 7 hours away. It had taken a lot of work with FEMA to get this arranged. They were to leave the next morning.
I called another home that had actually been my first choice. I had asked a family member to check for availability for me and was told that it was full. I decided to call them anyway. They agreed to take the inlaws. Another flurry of paperwork. I was so thankful.
The next morning I received a call from the hospital letting me know FIL had passed that morning. I was stunned.
MIL was brought by ambulance alone. I had to get FIL transported by a hearse.
MIL died one month and one day later.
But the NH was great for the time she was there. I turned her over to SIL who I heard later was upset at my choice of rehabs. I was so tired, I didn’t even let it faze me.
I was traumatized by the whole ordeal. I lived two hours from their home and 6 from where they were in the hospital. I had spent everyday on the phone with the medical team trying to handle surgeries, a fall, rehab, MRSA, crazy relatives. I could write a book.
I will never forget that NH employee telling me she “ felt they would fail to meet my expectations,”. As hard as it was to hear those words at that time, I’m sure they were right.
I was like you, foolishly thinking that as the customer they would want my inlaws business. I look back on that (10 yrs ago) and realize how lucky I was to have people cooperating with me at all. I was so frantic with the enoromity (to me) of what I was trying to accomplish.
I felt so bad for the inlaws. They too were difficult to deal with in previous years. Their children were easily intimidated by the father.
The SIL had not shared the obvious diagnosis of dementia of FIL. He had been calling the shots. She was protecting his dignity. Sigh
We had just learned MIL had cancer.
All that resistance went away when the natural disaster struck. They were not pushing back at this point. All the fight was gone from them and the dementia had really escalated. They were frail old people ready to go. Lost in unfamiliar territory. What a shock it is to enter the care taking world for the elders and the family. Yes. Reality is tough.
Reality checks are not fun but as previous posters mentioned, at least the agency didn't waste more of your time.
Good luck to you and mom and keep us posted!
I was a visiting nurse (different from the in-home 8 hour shift care you need). I had a few occasions when I would not return to a patient's home.....severe verbal abuse from patient or family, physical abuse from patient, abject filth and dangerous working conditions in the patients home.
Nurses or caregivers working for these agencies make much less pay than in a hospital. Many work on a per diem basis-not getting any benefits but they get to dictate the hours and days they work. The company you contract with is at the nurses mercy for when the nurses or caregivers want to work and for whom.
You probably will go through a few agencies until you get one that will "fit". If your mom has a bad attitude, you will have a hard time retaining caregivers. They can choose not to be with her and move on to a more cooperative patient. Sad, but true.
If the situation is severe, you may have to place your mom in a facility. I'm sorry.
I can tell you from personal experience working for an in home care agency years ago.......we had a man named Gene who had Alzheimer's and was a BEAR to deal with. He'd come after me with his walker raised up and a snarl on his face. The food I cooked him was never good enough, nor was any other service I provided for him. I lasted 3 or 4 weeks with Gene before quitting, the longest of all the caregivers sent by the agency. Eventually, the agency told Genes family they could no longer be of help......nobody was willing to go back!
I hope your mom's attitude improves so you can get her the needed care.
Best of luck!