Struggling with care plan - first post

NuttyProfessor

I've seen a lot of similar stories posted here but....I hope I can get some good advice and feedback from the group.

My mother (currently age 86) started down the Alzheimer's path several years ago, but the decline has been especially precipitous in the past year (due to a combination of a fall & fractures, and the COVID vaccine).  She's always been hardworking, resourceful, and highly intelligent - she's probably "middle stage" except she's more functional than most would be with her level of impairment.  She manages basic self care surprisingly well, except for the occasional snafu like trying to flush an incontinence pad.  And she's really a lovely person who sparks an amazing amount of loyalty in everyone she meets.  The big problem:  she is THE BOSS in all things.  My way or the highway. 

She's a minefield of triggers.  And she hates having aides...she kicks the aide out of the house every day reliably around 3-4pm.  If I'm there at the time she'll kick me out too.  The only way to keep this from becoming a full blown psychotic episode is to leave the house, and return an hour later after she's calmed down.  No agency aide will do this, which is why the private hire was the only way to go.  The only reason having an aide is feasible at all is MEDS.  Risperdone and CBD oil, with trazadone for rescue, at the lowest doses possible.

Knowing that my mom will fight like a demon against anything she doesn't have complete control over, my plan a year ago (when she was still living independently) was for her to move into a small apartment in my building (I live in NYC), so she could sort of live with me but have her own space, for both her sanity and mine.   The only reason this is possible is that my mother decided she wanted this move.  Unfortunately it's still in renovation hell, but hopefully it will be done in another month.  My brother (architect overseeing the renovation) is making the apartment as safe as possible for my mom.  He's designed assisted living facilities so he knows what he's doing. No trip hazards, open simple layout, wide doorways etc.    My mom still talks about moving but I'm not sure if she really understands that she will be leaving her home of 60 years - stairs and all.  The only issue...it's a 1 bedroom, so likely no live-in aide.

I've looked at memory care and assisted living facilities in the area, thinking that my mom really needs that level of support and at the same time she wouldn't need an aide at her side all the time, but I quickly realized that there's no way it would work.  My mom would fight like blazes and will throw nonstop tantrums, and no way would she be like the quiet, passive residents I always see on tours.  We tried adult day care already and it was a disaster...they called the morning of day 2 to come get her.   Also, I'm not sure if any facility would deal with the CBD.

The question is going to be how I can manage her and keep my job at the same time.  I'm a tenured professor at a prestigious university, and my career has taken a hit.  I'm hanging on by my fingernails at the moment, relying mainly on my colleagues being very understanding.  

My sisters (both of whom live far away but visit frequently) both insist that my mother needs 24/7 supervision, but the constant battles are exhausting to both me and the aides.  And she's certainly unsupervised in the late afternoons when my mom has banished the aide from the house, and she does fine.  In the apartment, she can probably manage with just a morning/early afternoon aide to deal with showering/dressing/breakfast and lunch, and take her out for walks, then have time to herself in the afternoons during which she will call me 20 times, then I can go home and feed both of us dinner and make sure she's set up for bed.  One nice thing about her mobility limitation:  if she wanders she won't go far.  The apartment has a private outside entrance that faces into the coop grounds (no city street), where there's people and 24/7 security.  I would love to arrange for something like Meals on Wheels, with someone to bring her dinner and check in on her, because....working late and working from home in the evenings is part of my job.

I'm not really sure how this plan is going to work out, and whether I can pull this off without going insane or jeopardizing my career.  The only thing I know for sure is that institutional care is off the table for now, at least until my mom's Alzheimer's is much more advanced.

Comments/thoughts/advice appreciated!!!

Stuck in the middle

Hello, Professor.  Welcome to the club no one wants to join.

I think you are wise to research inpatient facilities, because it sounds as if you will need them in the foreseeable future.  I also think you are correct that your career can easily suffer from this situation.  My advice would be to protect your career, since your mother will likely require institutional care in the next few years whatever you do.  Some here relate the story of Sandra Day O'Conner, who resigned from the Supreme Court to care for her husband and was forced to institutionalize him within a year or two.  She regretted her decision.

Think of yourself as a lifeguard.  The first rule of lifesaving is to prevent the drowning person from grabbing your neck and drowning you.

Be strong.  You have a Herculean task before you.

oehlsena

Hello, my experience with this is not much but here is how I can relate. My story deals with hysteria in the form of aggression which is kind of a different ball field, however, this is what I thought of. My LO was removed from her care facility last December. She apparently had become aggressive towards staff and was sedated (without our permission) on that occasion and following occasions and the family wasn't informed until later, which two of her children really were upset about. There was an investigation into the facility because of that and other factors. 

We learned about this when she was admitted to the hospital for a suicide attempt. We were also told she was no longer going to be a ward at that care facility because of that behavior. Fortunately it was my DH wish to remove her from that care facilty and to start home care anyways, so it worked out in a certain sense. 

Now that she is here with us, she is weakened enough by the disease that aggression/hostility is only a real emotional, mental, and spiritual conflict for us, but it has been a nearly everyday conflict. 

Now, this is someone that cannot provide care for themselves any longer. She needs 24/7 aid. I cannot imagine what sort of care facility would accept her, due to her hostile streak. Fortunately, thank the Lord, we have the means to scrape by and provide care for her, at the present.

I think that there are definitely care facilities that are trained to deal with hysteria in their wards. However there is a limit to what they can deal with. 

loveskitties

I don't know how meals on wheels works NYC, but in my county in VA they deliver meals/food once a week.  The assumption being that the person receiving them can also store and microwave them themselves.  

Perhaps you could post at your university for a student/grad student in the medical profession to come in late afternoon/early evening.  You might be able to sell it to your mom that you are trying to help them out with a little extra cash by giving them a job.  Perhaps there is something she could "educate" them on.

NuttyProfessor

Stuck in the middle, thank you for the Sandra Day O'Connor story!  I looked it up, had no idea about that history.  It's inspiring as well as tragic.  I'll definitely get her biography to read more about it. She describes bringing her husband to her chambers at the Supreme Court so he could sit there while she worked.  She also describes him as wandering frequently, which is why she ultimately had to place him.

It's different with my mom...she wants to be the focus of attention at all times, so it's impossible to work in her presence.  That's just her personality.   But, I'm lucky that my mom has limited mobility, preventing wandering too far but still allowing her to putter around in a small apartment.  Anyway my plan was to get her a Ring doorbell so I can be alerted if she tries to leave the apartment.  I already use cameras to allow both the aide and myself to keep an eye on her when she's alone.

Will do my best to hang onto my career! 

oehlsena, I can definitely relate to the hostility/aggression.   My mother was totally out of control before I started trying medications, and the thing that drove me there was that she was hurting herself (including an epic event in my kitchen one night at 2am, when she found the scissors and started carving up her scalp).  This was made worse by Alzheimer's meds e.g. Aricept, and also paradoxically worse with Seroquel.  Risperdone helped, but she can only tolerate a small dose before starting to become rigid. Trazodone helps but it makes her unsteady which made me nervous, given her susceptibility to falls.

You might try CBD oil.  I buy the hemp version (totally legal) online, as I found that works better than the cannabis products from dispensaries.  It is completely DIY because there are no guidelines and no official support from the medical community, but it worked miracles for my aunt (my mother's sister, in memory care with Alzheimer's) and definitely helped my mom.  It's not a miracle, but if you're struggling with agitation that's preventing you from getting your mom into a stable care situation, it's seriously worth a shot.

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NuttyProfessor

Victoria2020 - thanks for the comments.  It is a conundrum.  The problem is that arranging 24 hour care can be done, but it would trigger too much negative behavior.  My mother's worst behaviors are triggered by the presence of an aide, and also someone who is in her home but not paying attention to her every split second.  When she's with me, I literally can't respond to a call, email or text without my mother getting angry and upset.  Aides have tried to escape to their room in my mother's house for a bit of quiet time and to remove themselves from an escalating situation, but my mom knows they're there and having them in her house but out of sight only makes her more agitated. That's why the one and only way to calm her is for the aide to leave the house.  It works well, and she never tries to go out when she's alone.  She just putters around.

We've involved my mom in the apartment renovation and had her tour it many times, so it's already ingrained in her mind as "her place".   I'm aware of the trying to leave and go back home possibility, which is why the apartment will be set up with Ring cameras and sensors.

If the scenarios you're envisioning start to happen, I'm prepared to add on care as needed - but it will always be a tightrope walk due to the above issues.  I've thought about hiring someone to remotely monitor the cameras and sensors, who can alert me if something happens that needs immediate intervention.   A professional service would be even better, but unfortunately this doesn't appear to exist.  If anyone knows of one I'd really appreciate suggestions!

Lastly....the coop is very hospitable to ailing seniors.  It's a designated NORC, and there are a number of residents with dementia in various stages.  The security guards already do routine checks of elderly residents who live alone, and the resident manager also keeps a lookout...she's been known to do things like help find aides and buy groceries for people in need.  In our case she's helping by arranging for the coop to install new banisters for the apartment entrance.  Obviously they are not there to provide care, but it will be a very useful safety net.

mommyandme (m&m)

My brother and I were managing mom’s care long distance for almost two years.  We started care in my mother’s home six hours a day/split shifts with three hours in the morning to make sure she was dressed, fed and had meds along with a lunch left in the fridge for her. Then another three hours from 4-7 pm to make sure she was fed, meds and ready for bed.  The am caregiver would take care of appointments and bathing also.  Then we upped it to eight hours per day split into 2 four hour shifts.  That worked well for us until 24/7 became necessary, of course.  

I’m glad you have cameras available to help you supervise. We had to install them to provide 24/7 supervision until we had the 24/7 staffing we needed. They still provide much needed support for us.  Ultimately we moved mom here to CO where she lives in her own home directly behind my house. We call it our compound as we share the backyard fence which is open all the time.  I’m her primary caregiver with respite help. 

What you describe sounds very familiar and normal for this stupid disease.  I hope you find some peace with your decisions going forward.  This is all so very hard. Thanks for sharing. 

Jo C.

Dear NP; a very warm welcome is being sent your way.  You are certainly trying to accommodate your mother's care as well as her living needs as best you can only to find yourself in the middle of ongoing major struggles; I am so sorry.  It really is a significant challenge and I can only imagine the stress. She is blessed to have such caring and kind children. This will be a bit of a long Post; I apologize in advance.

Sometimes when we are very close to all that is happening, we tend to not see the forest for the trees; I was one of those.  My mother was very similar to yours and it was a dreadful, dreadful situation for all involved including my mother whose reality was so skewed and her behaviors so agitated and controlling; she suffered too.  This existed until I finally hecame a bit more in tune to the realities and got the professional assistance she so badly needed. She would never have approved, but we are speaking of persons with badly broken brains.  They have "wants," they have "demands," but they have no logic, reasoning or judgment.  That must come from us.  We cannot continue to operate on their demands.

To continue trying to meet the same behavioral challenges the same way is like trying to nail Jell-O to the wall over and over again.  Something might stick for a split second, but it will always abruptly splosh down making a mess all around that is very difficult to clean up.

Some of what you have written has raised some questions; especially about the reaction to meds as well as the type and level of behaviors.

First; does she have a dementia specialist?  If so; that is good to know.  If not, this may be part of the problem.   Frankly, though I may be incorrect as I am not a physician, the behaviors as you describe them do not feel like Alzheimer's Disease.  May be it is, I am simply relating some of my experience.

It is imperative to have the correct diagnosis for type of dementia of which Alzheimer's is only one of many types.  Reason is; treatment meds for one type of dementia can be contraindicated in another and make things far worse.  Misdiagnosis is not uncommon.

My mother was diagnosed with Alzheimer's Disease by her Board Certified Geriatrician.  She was prescribed Aricept and she could not tolerate it as it made her behaviors far, far worse. I mean; over the moon.

I finally got my mother to an excellent Neurologist who did a thorough exam and ordered a SPECT Scan; there it was as clear as could be, not Alz's, but a behavioral variant of FrontoTemporal Dementia and yes; Aricept is contraindicated in FTD.

When reading your descriptions, I also read the reaction to the anti-psychotic; that is typical of a Lewy-Bodies Dementia; some LBD is secondary to Parkinson's Disease, but there is also a non-Parkinson's.  
 

What I am finally getting to, is that your mother may well benefit from a dementia specialist re-visiting the diagnosis for type of dementia.  I am going to make another suggestion which may not be comfortable.

That is; your mother may benefit from a short term stay in GeroPsych which would be an involuntary admission.  In an inpatient Geriatric Psych setting, our LO can be assessed on a 24 hour continuum, appropriate meds can be initiated and then assessed for effectiveness and any side effects.  This cannot be done well as an outpatient for a person with such severe symptoms.  My mother was admitted to a GeroPsych Unit in an acute med center on a 72 Hour involuntary admission, but that was extended as it was evident she needed more care and treatment to bring reasonable success to develop an effective treatment plan. She was an inpatient for nine to ten days before being discharged to home.

 Once accurate diagnosis was made, and adequate treatment was in place, she was able to discharge home with a 24 hour care aide.  Instead of firing care aides and railing against all assistance, she was far more stable; not perfect, but far, far better.  She was able to live at home for a period of time, but the time did come that she required 24 hour care in a facility setting. By that time, she did not fight that and actually benefitted very well from the care setting.  The important thing to remember is that the dementia will continue to cause a decline. Sometimes a decline will be steady; other times decline can happen abruptly.

In order to have success and bring peace to your mother as well as to her family, it may be that admission to GeroPsych might be what will best help her.

I had to finally learn that no matter how severe my mother's agitated over the moon behaviors had me often tied in knots; it was hell for her too.  Imagine living in such a state with all that agitation, anger and upset with all the delusions and demands inside her head, never with a moment's peace. It is awful to even think of having to live that way. Since we are the only ones who can reach out for help, we really must do so as you are so valiantly trying to do.

Please let us know how you are doing and how it is all going; we will indeed be thinking of you and we truly do care. I know you are a busy person, (understatement), but we will be looking for you and hoping that you can get your mother to the care which will help one and all.

I am sending warmest of thoughts your way from one daughter to another,

J.

NuttyProfessor

thank you for these kind posts!  It's so heartwarming....and sad at the same time.  As someone said, this is the club no one ever wants to join.

mommy&me:  your approach to your mom's care sounds very much like mine!  The apartment in my building is my equivalent of your Mom Compound.   And, your idea of split shifts to take care of mornings and dinner/ready for bed time, supplemented by electronic surveillance.  I'm really glad to hear this is working well for your mom!  (for selfish reasons too.)  I'd love to hear some more details if you want to share.

Jo C:  I had the same thought about the possibility of it not being Alzheimer's, but in fact I do have my mom hooked up with a specialist (at my university).  They tell me that she has Alzheimer's with psychotic features, which unfortunately indicates a more severe form of the disease that usually progresses more rapidly, and has much worse behavioral manifestations than the usual.   An elective Geri Psych admission is not at all a bad idea...I'll bring it up at the next appointment.  I had already definitely planned to ask for more help with medications.  My CBD oil experiment showed me that my mom's quality of life could be so much better if she were on an optimal med regimen.  I know there's no such thing, but I'll settle for "better than what we have now."

Jo C.

For Members who are not familiar with dementia induced psychosis, there is a lot of information using Google search.

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Did your mother have any mental health issues prior to the onset of dementia?  A dementia induced psychosis can mean  delusions or hallucinations, but it can also mean other components which it appears your mother has.  It s wonderful you have a dementia specialist as part of the care team, that will be helpful as this moves forward. 

Despite being diagnosed as Alzheimer's with psychotic features, it may still be a good idea to ask if there may be a need to rule out LBD or a behavioral variant of FTD since things have significantly increased to an unmanageable level and the reaction to the Aricept and Seroquel was not tolerated and made things worse.   Some people with dementia are diagnosed with Alzheimer's Disease by excellent specialists.  However, as time passes, it sometimes does happen that the diagnosis will evolve or that there will be a secondary diagnosis included; that is not unusual.  I believe my mother actually had not only the diagnosed behavioral variant of FTD, but also a vascular dementia.  Never hurts to raise a question, sometimes our busy specialists will stop and think more deeply and decide whether our question merits more attention; it is rather like a bit of a nudge.

My mother had no success with medication until Risperdal was introduced.  However, it took time to get that adjusted to its most effective level.  She needed to have the doseage increased twice, and also the time of day and how many times a day suited best.  When the med was on board at its effective level, it was almost a miracle with the change in her behavior and she had so much a better quality of life.   Much later, about a year or so, we decided to see if tapering the Risperdal would be workable.  Oh boy; it certainly was not.  The dread behaviors resurfaced very quickly, so we never tried to taper the med again.  We were fortunate in that she had no side effects and it did not sedate her.  Truly; her quality of life was restored; still had to work around some things, but not like prior to the med.

I also had to choose the 24 hour care aide very, very carefully.  I tried split shifts, it did not work well; change is often the enemy for a person with dementia, so I worked with one 24 hour person.  The first two interviewed well and I thought we had a good fit only to find out the individuals were nowhere near what had presented in interview with one being dangerous despite having checked her past clients family members. Third time around, I found the dearest, most competent person; if only we could clone her!  She was with us for years as my step-dad developed Alzheimer's Disease and she also cared for him.  That good fit enabled my LOs to live at home far longer than they would ordinarily would have been able to.  My mother came to adore her aide and that was a huge plus.  We had a second person to work weekends, and the two aides beame a solid team.

Anyway, a lot of input you did not need, you are moving along as best can to bring success to this set of dynamics and eventually it will all come together.

J.

NuttyProfessor

J.O., really appreciate your thoughtful comments!

My mother did not have any pre-existing mental health issues.  Some personality traits that have become more pronounced and that are making things very difficult, like her little quirk about wanting anyone physically in her home to remain in her presence and focused on her at all times.  But no prior psychosis.

Her psychotic episodes are very different from the usual Alzheimer's agitation.  She has that as well, of course.  During a psychotic episode she becomes very calm with a quiet, but deadly anger.  Oddly, she also becomes much more capable, doing things that normally are beyond her physical or mental capabilities.   Along with the anger she would display delusions & paranoia, no hallucinations though. 

They sometimes came out of the blue, e.g. after waking up from a nap, but other times they can be triggered by one of her pet peeves, like the presence of an aide, or a reminder that I'm now running the family business instead of her.  (Oh I hadn't mentioned that...this is in addition to my regular job and mom care duties.  Fortunately a sister & brother are helping with the business.)   Risperdone has greatly helped with these episodes, at the cost of some reduced mobility.  She's been on it for several months now, and just as you reported, I can't reduce the dose.

Finding aides...yes that's been a big problem.  I found a wonderful live in aide but just weeks later, she had to leave to take care of her husband who developed some new medical issues.  The one we have now is competent, but not warm and fuzzy.  My mom is ok with her but it's not ideal.  I also figured that fewer people would be better, and my hope was to get someone in place who would stay long term...but that's so difficult.  We're instituting a second aide this weekend, to give the main aide time off, and I'm sure it's going to be a bit of a nightmare.  Fingers crossed.

Speaking of aides...another question.  Do most people here with 24 hour care go to an agency, or do they use private aides?  If the latter....do they all insist on being paid in cash?  The aide right now has agreed to cash pay for a portion, and the rest via Zelle and we will send her a 1099.   Physical cash under the table is a bit scary when it's this much money, as if there's an investigation there could be serious ramifications not just for the aide, but for me.  The aide is being paid $250/day, and she's been making noises that she wants also a paid day off a week and more money, like $300/day.  This really annoys me....as a federally funded research scientist with years of intense training, I earned less during my first 10 years as a faculty member than these aides do.  Not to mention that my mom is effectively paying their taxes, because the cash payments can't be deducted on her tax return (she's high income due to the family business).

Wild-West

Hi NP,

We opted for the use of an agency, but there are certainly pros and cons for going independent vs. an agency. For myself, I didn't want to deal with all the liabilities and tax issues associated with going independent. No matter which route you take, finding a great caregiver is tough. In our experience the good ones want 8 hr shifts. We live in southern California where the traffic is rough and the cost of living is crazy, so I don't blame them for not wanting to drive for a 4 hr shift, and possibly miss out on an 8 hr gig. We've also gone to 5 days a week, a huge struggle financially, but we previously lost a wonderful caregiver because she needed FT, so I wasn't willing to risk going through that again. So, two days a week and every night of the week I am my mom's primary caregiver, with baby monitor, camera app, call button monitor, etc. But for 5 glorious 8 hr days a week I am blessed to have help. Though recently my brother agreed to sleep over two nights a week and be "on duty," because I was completely exhausted.

I also had a career in higher education, and I did eventually retire a tad early because of the progression of mom's illness. For me, it was the right decision, and I have no regrets. 

Other folks here have commented on the difficulty of those closest to their loved ones seeing the truth of their decline. That was certainly me. As much as I thought I understood the depth of my mom's confusion, I realize now that I knew very little until she moved into our home. Lately, I feel like her decline is happening in dog years, such a quick desent.

You've found the right place, here, to gather knowledge, insight, and encouragement to help you along your journey.

Best,

WW

Jo C.

Oh the fuss and bother trying to find and hire a care aide; it really is labor intensive and sometimes does not deliver as promised or seemed it would do.  Out here, in SoCal, with an agency, we can no longer get one aide for 24 hours or even two care aides on 12 hour shifts for 24 hour care. 

The agencies are now requiring three eight hour aides per day Monday through Friday, and on weekends, three different eight hour aides Saturday and Sunday.  That means a minimum of six different care aides in the house per week!  Can you imagine how that would work for a person with dementia who cannot bear changes in their life?  Not to mention trying to keep oversight and staff changing all the time.  Not only that, the better agencies, last I checked, wanted anywhere from $600 to $700 per 24 hour day.  Per day.  You can imagine where that leaves most middle class and lower income people. My LO would never have tolerated all those people.

Another issue I found with the agency staff, they were far more likely to leave for other assignments, other agencies, etc., and were more often likely to call in sick or have an excuse as to why they could not work that day; even in the better agencies this happened and in the lesser agencies without higher performance standards and expectations of staff, it was rife.  Most agencies will put in a temp to cover, but it usually happens at the last minute with delays, etc.

Also, to my utter amazement, most agencies would not permit interviewing aide candidates prior to hiring.  That was unacceptable for me; I would not do that for care of a small child, nor would I do that when it involved my LO with a badly compromised brain secondary to dementia.  When interviewing a candidate, I always paid them for the time they spent in interview; it seemed only fair to do that.

I finally hired privately; after two disasters,  a wonderful, competent sweet person was found.  She was so good; but she only works under the table.  I was concerned about that, but needs must and desperation was driving the train.   She was amazing, and as said earlier, she was with us for years. She now charges $300 per 24 hour day privately which where we live is less than most private aides who are asking $500 per 24 hour day; she never lacks for clients, her reputation precedes her.   As for an aide arrogant enough to require a paid day off each week . . . . that would be a deal breaker for me. I could only imagine such a demanding person may well become even more of an issue later.  That was pretty gutsy of her.

There are of course, businesses who will handle all the paperwork for private aides payroll, that is an option.  I also checked my LOs home insurance policy and discovered that while there was coverage for someone injured in the home, that actually excluded hired help.   I added that coverage and as I recall, it was $120 per year.

So much to think about.  Hiring an aide is one thing; keeping them is quite another.  With a good aide, it is important to be respectful and let them know they are appreciated, and to be available if a problem should pop up.  If 24 hours, they will need their own bedroom and a monitor to hear their patient at night.  I also put an easy chair and TV in the aides room. She was consciencious to a fault, went above and beyond what her duties entailed.

Getting over the top noxious behaviors addressed is key; aides do not have to stay if the behaviors are constantly a dreadful problem and finding themselves being berated, etc.  I send best wishes for a really good outcome, here's hoping it all works out really well. 

In the meantime, seeing a Certified Elder Law Attorney to get all the ducks in a row and to discuss Guardianship dynamics should that ever become a necessity can also be helpful. 

Best of wishes and so hope all gets settled and in place soon.

J.

Mint

Welcome NP

Our mothers sound a lot alike.  Mine will turn 86 in July.  

Jill N

Your mother seems very similar to mine. She was Dx at stage 5 a year ago.  When she was dx the Dr. recommended immediate placement but we were not ready, because of COVID and because she also suggested that when we move her, its best to only move her once.  We were deciding on a possible move and so we kept her in her home with split shift support in order to make sure she took her meds and had meals.

There is a lot of "This is MY house" and trying to kick caregivers out.  We have to remind her that this is not just her house anymore, this is the location where she is cared for, and it is the workplace of her caregivers.  We have designated spots for their things, etc. That caused an uproar at first but it is non-negotiable.  She is not in charge of her health decisions anymore, we are.  And yes, we had to medicate her which has been a challenging road to balance out.

Like you, I am dreading moving her to memory care because she will fight it and lash out.  I also am aware she could have large progression when we move her.  In fact, I am prepared to have her transported via ambulance because I dont think she will be calm enough to let me drive her. But when its needed it has to be done.  I cant care for her at home (3 kids, full time job, etc), and I cant let their childhoods/ my job be impacted by any more impacted by the tornado of it all than it already has (yelling, hitting, etc).  So at some point Im going to have to bite the bullet and do it, because thats whats safest for everyone, and she is not to make good decisions. Ive toured places, and Ive chosen one known to be able to manage behaviors. Like someone else said, its difficult to find a place that wont kick out because of behaviors, but they do exist.

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NuttyProfessor

Scary story about the crooked notary and fake trust....

I monitor my mom's accounts so if anything happens I'll catch it.  I took her checkbooks home but never occurred to me they could get my mom to sign a document.  darn*.  I bet you could sue about that though, because if someone asked your LO if they agreed & signed we know what the answer would be .

Also good advice about the home insurance, I'll check with my mom's agent.  That would apply also to the housecleaner who also works under the table.

$300 or even $500 a day??  Geez.  I was thinking of offering the current aide $300/day just to keep her because she really is good, provided she accepts a 1099 for the whole amount.  She asked for 25% in cash, the rest is paid via Zelle.  I will definitely say no to the paid days off concept.  Unfortunately, the aides can be this entitled because they're right, there's always someone out there with more money than sense, willing to pay whatever they want.   FWIW, I've gotten the sense that NYC has a much more competitive aide scene than northern NJ (where my mom is).   Just a lot more people living in the city who want to do aide work, and it's easier to get by without a car as nearly all live in aides don't drive.

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NuttyProfessor

Be  careful about 2nd hand info...I go directly to the IRS publications to answer questions like this.  Many websites, even if they sound authoritative, are simply wrong.  The one you want to read is the one on deductible medical expenses.

The IRS recognizes that dementia patients need care even if they're capable of dealing with their ADLs, and they also recognize that handling payroll for families is a huge burden.  So, they've created a loophole specifically for dementia patients:  as long as the caregiver is described as a "sitter/companion" rather than a "home health aide", you can give them a 1099.  And, you'll need documentation that the person with dementia has that diagnosis and requires supervision due to impaired cognition.  A doctor's note works fine.

This applies only to private aides who are willing to work above board.  Which it sounds like, is a minority of them.   If your LO has income that needs to be sheltered from tax, it's worth the extra searching to find an aide who will work even partially above board.  Also, I'd pay extra not only so my mom can get the tax deduction, but for sheer convenience.  Carting boatloads of cash to the house every week is seriously not how I want to spend my time.  It's also hard to hide my resentment of people who are taking in a huge income, not paying a dime of tax, and claiming a raft of social services for low income people while they're at it.  So that my mom and I get to pay the tax for them, and also our taxes pay for those services.  Makes me want to call the IRS on them myself.

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May flowers

I am struggling with this at the moment - we finally found an aide who is perfect for my FIL, she has been a huge blessing for him and us and is meticulous in his care. He loves her. 

There is one big drawback, she wants to be paid check or cash. I have a week and a half before we meet the threshold then we have to sit down with her and tell her she has to become an employee. Our plan is to sweeten the deal by increasing her pay that her after-tax income will be the same as she is making now, plus she will have the added benefit of SS contributions and a safety net if she has to file unemployment. It helps my FIL with a tax credit and other protections as well. I’ve looked up the 1099 route and I cannot see any way that her caregiving is considered contract, because she is in our home, our hours, our equipment, and following our instructions.

I hope it works out, I don’t want to lose her. 

NuttyProfessor

Mayflowers, good luck and let us know how it goes!

I've done the same with aides who have insisted on being paid cash under the table.  The answer is invariably "no, and I won't have any problem finding someone else willing to pay cash."  When they have no stated income they can get benefits like Medicaid, food stamps, and all manner of goodies.  Paid for by YOUR tax dollars.

It's really a maddening situation.

Regarding the "sitter/companion" 1099, here is the text from the IRS pub about statutory non-employees:

https://www.irs.gov/businesses/small-businesses-self-employed/statutory-nonemployees

"There are three categories of statutory nonemployees: direct sellers, licensed real estate agents and certain companion sitters....Companion sitters who are not employees of a companion sitting placement service are generally treated as self-employed for all federal tax purposes.

and more detail is provided here:

https://www.irs.gov/publications/p15a#en_US_2022_publink1000169483

Companion sitters.

Companion sitters are individuals who furnish personal attendance, companionship, or household care services to children or to individuals who are elderly or disabled. A person engaged in the trade or business of putting the sitters in touch with individuals who wish to employ them (that is, a companion sitting placement service) won't be treated as the employer of the sitters if that person doesn't receive or pay the salary or wages of the sitters and is compensated by the sitters or the persons who employ them on a fee basis. Companion sitters who aren't employees of a companion sitting placement service are generally treated as self-employed for all federal tax purposes. However, the companion sitter may be an employee of the individual for whom the sitting services are performed; see Pub. 926.

And, it also states that the requirements for payroll tax withholding apply only to "statutory employees" - which companion sitters are not, unless you specifically make them employees.

 

  

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