Emailing the BOSS Boss.

Saturday, Amy calls me and asks me talk to the new house manager on the phone. The house manager says she told Amy that Amy can voice any concerns to her, but she doesn't. I say, yeah, that's because she's been beaten down for two years. Here's a problem, I say, and tell her about the phone and TV situation. I get back on the phone with Amy and tell Amy what I told her (I didn't realize we weren't all on speakerphone). Turns out I told the person I told this to? THAT'S the person who told her she could only make one call a night. I tell Amy, it's FINE, and hey, at least it will get better.

Half an hour later, Amy calls me back frantic. The woman told Amy that she never said that, and that she would have to tell House Boss about talking to me. Soooo, Amy is imagining people say this stuff to her? Yeah, right. Aaaaaand now you're telling Amy that you tell all of your actions to the person she is most afraid of, the person who does the most to make her living situation negative. Awesome.

I can't calm Amy down, so I say let me talk to House Manager again. I explain to her why Amy is upsetting -- primarily reporting this conversations House Boss and how it will come down on her. She says back that she doesn't understand why Amy is upset, that she told Amy she can't speak for other staff but she doesn't mind helping Amy with her phone. Ok, this "don't mind" thing. Precisely the attitude problem at the house -- helping Amy isn't a FAVOR they are doing her, it's their jobs, and also, she doesn't understand why Amy is upset? I just told her. So I tell her again -- reporting the conversation to House Boss and Amy fearing backlash. Well, she has to report all conversations she says. She has to. We talk for another five minutes and she says, oh, I understand why Amy is upset, she doesn't want me to report this conversation to boss lady. That's fine then. I won't. Uhhhhhhhhhhh, wtf?!

Fast forward to today. Nine missed calls on my phone from Amy, in fast succession. Wooo, I can feel the weight of whatever call we are about to have already. Apparently, House Boss came to Amy and told her that she was going to talk to her tomorrow about this weekend. Amy is delirious with fear, that the House Boss will again call her a liar, and she doesn't know how to respond, and she'll just end up cut down further.

And so, today's email, to the Residential Director:

I was about to contact you regarding a number of issues when I got a very frantic call from Amy.  Apparently, House Boss has told Amy that she plans talk to Amy tomorrow about this last weekend.  On multiple occasions over the last two years, House Boss has accused Amy of lying and on one occasion conveyed this to her with the statement “I don’t like liars.”  Given her experiences with House Boss over the last two years, Amy is terrified of House Bossand of her upcoming talk, in which she predicts she will again be accused of lying.  Please contact House Boss immediately and ask that she does not have contact with Amy.  She is not to talk to Amy. 

I was already preparing to email you about a number of issues have come up repeatedly lately.   Amy has been reluctant to speak up – to staff or by having me contact House Boss, fearing backlash she has experienced in the past.  I worked with Amy to write about these concerns.  Amy asked that I send them only to you and not to House Boss (this was prior to Amy finding out that House Boss plans to talk to her tomorrow), as she feels, in her words, that anything she says to House Boss comes back to bite her, making her living situation all the more unpleasant, with House Boss accusing her of “telling stories.” 

Phone calls.  Amy has recently been told on multiple occasions that she can only make one phone call from her personal cell phone a night once in bed, and was told once that this is because staff don't like to have to keep coming back to assist her. Additionally, Amy is under the impression that she can't watch much TV at night – she feels pressured to put her mask on and go to sleep, and believes she is inconveniencing staff.  I've assured Amy that this is not the case – that as an adult woman, she can make as many calls and watch TV as late as she wants, make her own decisions about what time she would like to go to bed, and that it is not an inconvenience to staff to assist her – it the job of staff to assist her. Please alert staff that Amy can make as many phone calls as she wants, watch TV as late as she wants, and go to sleep at the time of her choosing.  She should be provided whatever assistance is necessary for her to do this. 

Amy did speak to one staff member regarding this – the new house manager, I believe – who then spoke to me, stating that she couldn’t speak for other staff, but that she didn’t mind helping Amy with her phone or TV.   This is precisely the issue.  Caring for Amy isn’t a matter of whether or not staff “mind.”  It is their job to provide Amy with support. 

Toileting.  A few times recently when Amy has requested to go the bathroom, she has been met with challenges, such as statements like 'you just went.'  When Amy needs to use the restroom, she needs to use the restroom, regardless of when she last went.  Recently, after being put to bed, she alerted a staff member she needed to poop, and was met with “why didn't you tell us?!?!” (as in, before she got out of the shower).  She was bedpanned, however the response to her was not ok.  Amy had just realized her need.  When Amy needs to use the toilet she's entitled to be assisted with her bathroom needs, and a negative response or challenge to her need is completely inappropriate.

Take as needed medications.  Last week Amy needed to take an antacid and there were no staff on hand who were med-trained, and they had to call someone in to administer the medication.  Amy felt very bad about causing this inconvenience.  Later, when needing a lorazipam for her anxiety, Amy refused to request it because she was worried about inconveniencing staff again.  This happened again last night, but Amy spoke up, and Char thankfully was able to come in to administer the meds. 

There are two issues here.  One, that Amy lives in terror of inconveniencing the people whose job it is to take care of her due to the negative/irritated/inconvenienced responses she has received over the last two years. 

Two, both of those RX's are prescribed as “take as needed,” meaning that Amy can decide to take them at any time.  I know that Amy was to be screened at Thompson on the Self Administration of Medication Assessment tool, so she'd be able to self administer pain meds (my mom was working with Sue Quillin and Sandi Hix on this).  This would fall under rule 116 that if Amy has the cognitive ability to understand the medication and her needs that she be allowed to self-administer even if she needs physical assistance to access the medication, and under rule 119, that allow staff to supervise her in self-administration, even if she needs physical assistance.  Should I contact Sue to see if this was worked out, and if so, can this be applied at the house as well? 

Pants.  For the last few months, every time we see Amy, she has been wearing lounge/sweat/pajama pants even though she has numerous pair of actual pants and capris in her closet, which she prefers to wear.   Please alert staff that Amy shouldn't be wearing sweatpants to work or outside the house unless she requests it. 

I realize that in the last two weeks, staff have been requesting fall clothes for Amy (there were also already a number of pairs of long pants and long-sleeved shirts in her closet, as well as a sweatshirt, a fleece, and a heavy coat) and so this makes the wearing of sweatpants reasonable, but this has been going on far longer than that.  I brought fall clothes on Sunday, and organized Amy’s closet, so there should be no problem

Sleeping on pee pads.  Please advise staff that Amy is not to sleep on a pee pad, and should Amy need to be bedpanned, the pee pad should be removed after.  The pads make Amy perspire, which is uncomfortable and not good for her skin. 

Potential move on the horizon.  As House Boss knows from Amy and from our past conversation (at Amy's September 1 neurology appointment), Amy is in the process of being accepted to move to a different home.  She has had her initial visit on August 26 and will soon have a multiday visit.  After this, pending that all goes well, Amy will move as soon as her room is ready and equipment on hand to care for her. 

Recently, Amy heard House Boss talking to a staff member at Thompson about her (in front of her, but not to her) stating that Amy would need to give 30 days’ notice to move out.  House Boss has known as of August 26 that Amy is planning to move out.  She and I have exchanged multiple emails since that time, and I spoke to her in person on September 1.  At no point has she mentioned this 30 day policy to me or to Amy.  Given this, we will be unable to provide 30 day notice.  Had we known of this policy, we would have handled her move out differently, and set a date for it from the beginning of the exploration . 

Staff should not discuss Amy in front of Amy unless they are speaking TO Amy, as in the situation above.  Another recent example: in the van on the way to Amy's doctor appointment, the woman driving her was on the phone having a conversation where she told the person that Amy's doctor appointment was too far away and she wasn’t going to take Amy again.  Amy tells me this person was from one of the other houses, but regardless, talking about a person to someone else IN FRONT OF that person is uncomfortable and disrespectful, and worrying that her caretakers are disgruntled produces anxiety in Amy. 

Embarrassing/negative assertions need to stop.  The other morning a staff member told Amy she peed in her bed when she had not – the moisture was likely sweat.  Amy rarely pees in her bed or chair and has never had bladder problems.  She was sick about this.  Called me frantic that people thought she was peeing in her bed, and also just generally felt like crap after being told this.  Why would someone say this to her? 

Amy has not mentioned the pants or pee pads issue to staff, nor has she challenged the one phone call issue, or the issue of hostile responses to requests.  Amy has always been one to speak up for herself.  In the last two years, I've watched her become a timid, nervous person, on eggshells regarding what she asks for so as not get on the bad side of any staff.  Amy has told me on numerous times that she does not feel she is treated like a person.  This is not how a person should feel in their home. 

Any refusal to assist Amy with what she is requesting, which includes a negative or reluctant response, is no different than handcuffing her.  Amy is a resident of the Elmwood home because her body does not work, and it is the role of staff to assist her with whatever she wishes to do in her home.  Amy should not feel she is inconveniencing staff when requesting assistance.

I want to assert that Amy doesn't lie or tell stories.  I'm not interested in who said what to who when.  If Amy is uncomfortable and fearful in her home and communicating with House Boss, then something is going wrong, and it's not on Amy's end.  This is AMY's home.  Based on what I have heard from Amy and read in the correspondence between my mom and House Boss over the last two years, this is nothing short of emotional abuse and manipulation of a completely dependent person from a person in a position of power, and it needs to stop now. 

God, I miss my mother right now.  She was a superstar at handling this.

And just like Amy, I'm scared.  Scared for the response, bracing for the fall out.