OT: I can agree with some of what you said. If I keep her on (which, at this point - is the obvious decision based on Ryan's needs) - I intend to be very clear about boundaries. I have a government provided coordinator for Ryan's assistance who provides some care as needed (a couple of hours per day plus ongoing extra assistance as needed - for example - we currently have an RN in once a week to assess his pressure sores). She has dealt with numerous agencies and is the first to agree with me that this woman goes way beyond her limits in terms of crossing the line with EVERYONE. She and the agency she hired (who could not provide the care but subcontracted to the current agency) agree that none of them ever raises more than 5% in a year. I have had complaints from the Occupational Therapist, the Pharmacist, My Disabilities Specialist Vendor and several of the RNs who visit about her demands and inappropriate "crossing the line". She hounds them in a forceful manner and most have told me they will only deal with me. Not her.
In Niagara we paid an agency which raised their rates app 1% annually. This woman agreed to the same rate as that agency when we hired them. One month in they raised it 10%. Then we got hit with the 13% tax situation. She insists I can claim it back but it does not actually look as though I can (I am not working). To add the 13% it outrageous. She knows I struggled to pay it for the past year but now she figures I can afford it. Josh is concerned that even though she says we will not be taxed - no one can assure us of that - we could turn around and get hit with the taxes again.
So - with respect to a fair increase - no - I cannot agree with you. I feel this is a very unfair increase and not in line with what others charge. I feel that she is bullying as she has also made threats to pull out if I don't like it. That doesn't say much about their commitment to Ryan.
The reason the other agencies cannot meet our needs at present is not due to the demands of his care - it is due to their own lack of available staff and the fact we live in a rural area with less workers available. My number one concern is not having staff show up. And unfortunately - in that line of work - it is a frequent thing. One that this agency gets right. So - how do I put a price on that?
Josh has a masters in business. He is very familiar with this situation and is appalled by her actions and lack of negotiating skills. He has attended a couple of case conferences and everyone in the room gets their back up from her. She is a force to be reckoned with. Not good for any of us.
I might end up being happiest with a nanny who can provide some of the care and some of the care provided by a different agency. That way - if someone did not show - the nanny could step in and provide the backup care.
I'm still investigating all possibilities but for now - looks like I have to keep her. UGH UGH UGH.
I am SO sorry you're going through this. And I do think she's taking advantage of her awareness that she's basically the "only game in town" aspect.
Probably her agency runs as well as it does b/c of her toughness in a management capacity -- but obviously since everyone else who has to deal with her in any ancillary capacity regarding Ryan -- agrees with your assessment - it is clear she DOES have very poor people skills.
She runs her business like a drill sergeant -- and clearly expects you to respond like one of her employees rather than as HER employer.
You are frustrated b/c you don't have many options in your new area and she knows it. But you also know that as a caregiver your mental health is vital to Ryan's well-being. And you're strong enough and masterful enough to handle her with kid gloves.
I'm not exactly clear why she expects you to be so available to her during the day -- as that is why you're paying people to care for Ryan so you CAN have some time off.
Is there any reason why you have to always take her calls? Could you tell her that you will be having a new schedule -- and that you will only be available to speak with her at 9 AM for example unless it is a true emergency?
You don't owe her any explanation as to why your schedule - life will now be more regimented - but you certainly DO have the right to set up boundaries for yourself.
You can say you're writing a book or taking up meditation at your doctors insistence -- and you need the total freedom from phone calls distractions etc.
And no matter what you're really doing which BTW is NONE of her damn business ... you do not need to be at her beck and call.
I understand the precariousness of your situation that you must not get her angry at you or alienate her b/c she could just "fire" you and leave you in a lurch.
But you need to come up with some plausible reason why you will no longer be available to take her calls all day long.
And just what is she calling you for and asking you to do?
Just reading about this makes me so upset for you.
I do agree with Josh that for now put up with it -- and come up with a Plan B ... I wish I had the answer but the limited options in your new area make it very difficult.
You have really hit on a lot of my points of concern. I am 56 years old and have been managing Ryan's care for exactly half that time - since I was 28. That means I was younger than both of my sons when I became a full-time caregiver - albeit - I was also a mom with very young kids who ran an active business. I also was the ONLY caregiver for Ryan for the first 10 years. Looking back - I have no idea how I did it.
But having been in business, I learned how to treat people - when to give a bit, when not to. And as I've told her several times during the past year - this is NOT my first rodeo. They are the about the 6th agency I've had. I know what is kosher and what is not. But I'm used to working with large agencies - they have set fees and fairly general rate increases. What I'm figuring out here is that she charges different rates to different people - based on what she thinks she can get them to pay. SO WRONG!!!
Today I read of a national company that lists agencies for hire in rural areas. They are listed on it. As such - I believe they have to comply to certain standards. I may make a cold call to that company and just ask some questions about the standard of rate increases. I don't want to identify myself because as Summer has pointed out here - I can't jeopardize Ryan's care. She has threatened to pull out 6 times now.
And I guess I'll have to start interviewing other agencies to see what I can come up with.
BUT - your other suggestions (both of you) are right on. And this is what I have been thinking about. Limiting my availability. Some of the problem has been because Ryan has been so sick lately. He is still struggling this week with a serious skin infection. Back to the dr tomorrow. But I'm at the point that I can't/won't answer to her demands anymore.
There are some advantages to having a nanny but also some disadvantages - like having someone around all the time - not so wonderful. But to be able to take him to Florida and have that person to transition him etc - that would be great.
This afternoon I fell asleep on the couch. And I had a really hard time waking up. I think I am just emotionally exhausted.
And yes - I think getting it all in writing is vital because I KNOW that part of it - she is hiding (she could hide a part that is taxable). She put some of it in writing but not all of it. Oh - and Josh thinks we should get in writing that the girls are getting most of the $ as their raise as she told us.
The one other thing about the rate is that she is charging us for transportation - 2 trips a day - yet the government hours are supposed to cover one trip a day. I brought this up at the last case conference (month ago) and she threw a hissy fit. Told me never to bring up money at the case conference and that I had better pay transportation or the girls would all walk. UGH UGH UGH.
OK - concentrating on Josh being here. Better days.
Barb.....Good morning.....as a MI RN that has worked with kids for 19 years and within the Medical system, I really feel for U and the squeeze that parental caregivers get.
Yes... u have your hands full dealing with an agency like this and caring for Ryan, being his advocate all these years and dealing with another countries regulations ( Canada ) right? You make me exhausted just reading your posts ( im 56.7 months old and holding.)
I like the idea of a nanny.....Maybe a live in nanny.....An exchange of board and room with a compensating wage .to take some of this off your shoulders. Mental and physical exhaustion does not make for a happy healthy Mom ( or son )
And I'm sorry to say if this was happening within the United States U know there are so many options for reporting "HER" kind of activites......completely clueless regarding canadian labor laws.
And U did all of this when U were 28 because of the advantage of youth..we all did things (school, 2 jobs, balancing a family etc. ) because we wanted to life a better life.
I have followed your posts......and some times " It JUST ISN'T FAIR " Ryans health was not on your radar or your plans way back when, but I'm proud of you for not giving up......and just placing him a long term facility....like so many parents do.
Sometimes when I start bucking the system ( because it suks )........the ole saying Let go and Let god comes to my mind and I know he just laughs at some of my plans my will my way........
I hope YOU find the solution that will bring U some peace and some much needed rest.
It so nice to get the input from a nurse like you (and Gineen). It makes me know that I'm not alone in knowing that she is bullying me and financially abusing me. I could write a book about the behaviour of this woman. Last month - just as Ryan was going into hospital - she accidentally Butt Dialled me. I was able to hear her BADMOUTHING me to my son's workers - telling them that I should be paying them more. Just what I needed to hear. Now I know why the workers like her - she gives them just what they want! I don't need them siding with her against me. I also heard her badmouthing my government appointed care coordinator (who is lovely and very supportive). I called her out on this the next day (she appeared at my house when I was still in my pjs) - she denied it - said I heard wrong. I had even heard her speaking to my workers by name!!!
Every person who has attended at my home - re his care, his respite, his therapists, his dietician, his supplies vendor, his pharmacist - have said how pushy and demanding she is. She takes over my role at times but drives everyone nuts.
Although this is the last thing I want to do - I am going to start building some kind of a backup system. Some extra respite. Because I have a feeling things could blow up. I don't plan to talk to her at all about the new "billing" to start June 15. I already told her what I thought of it. Even if I have to accept it for now - I want a new plan forming. Maybe a nanny if I can't get reliable care elsewhere. And although I had stopped doing most of his "on hands" care - I may have to go back to that for a while.
Worse case scenario in my head - if they pull out suddenly - put him in respite for 30 days (the max) while I get a new agency in place.
I think it's time to call in the troops. I will call an agency I spoke to last month and also the agency who subcontracts Ryan's care to her. And the care coordinator again and also the national group she belongs to. I think I need to expose her for what I feel is financial abuse.
I can't take it anymore.
And yes - I wish you could be here to give us a break and help us transition through this. Besides - you'd love it. it is so beautiful and we're right on the lake. I need to get this back to the dream home it was intended to be.
I like that you are also 56. (I am 2 months younger than you - LOL). I'm sure we could be friends.
You have a plan........I like that U may be 2 months younger than me ( I'm a libra........U know our traits ) the scale always trying to balance everything and making sure everyone is taken care of...grr and Caretakers forget how to take care of ourselves Im finally learning that but i bet i feel 5 yrs younger ( on my good days ) hehe
Yes we love our neighboring country Used to fish up there for years Ottaman lake area
I feel like your friend and have for some time, all of 5 ft of me I just usually post much, but could not resist this time Hugs barb
You know your worst case..respite might not be that bad ( If its available in your area) Just so U can regroup.rest Sit quietly and determine your next step
A lady ( I'm using that term lightly ) like the one you are describing is gonna come at U like a Tornado once U start pushing her. Stand your ground Barb......Your the Mom.....U know whats best for Ryan, U , and your family.
And yes i do remember the butt dialing episode.....too bad U didnt have a recorder...hmmm
THIS would not fly in Michigan or Florida.........
NSS: It feels good to have friends and I'm glad you made yourself known.
I have called the Red Cross Supervisor (who subcontracts her) and the CCAC Supervisor. We will hold a case conference without her. The RCS told me that she KNEW this was going to happen - that maybe she buried her head in the sand for a while hoping it would blow over. She said that it was coming to a head - either I was going to fire her or she would pull out on me. She feels I'm being abused.
I also got an email from her (the witch) asking for my decision. (It's been less than 4 days) - that she needs it in order to prepare my contract - she wants to know HOW I wish to be billed. She also contacted my son's day program (which she is in no way affiliated) because they held a meeting with me last week and she was not included (she is infuriated by that). She ARRANGED a meeting with them without my knowledge so that she can be kept up to speed with the program. I am incenced by that. I just called the Program supervisor to let her know I will not agree to it. They can't make arrangements to talk about my son without me.
She also told me she will be calling me later today to discuss son. Oh goody!
Spitting fire today but I need to make this change in order to stay sane
