Monday, September 26, 2011

Holding a Care Facility Accountable

It’s a fine line between advocacy and being known as That Woman or Pain in the Rear (or worse). It’s not that I care what I’m known as (frankly, I’d rather these care facilities be on their best behavior because they think I might just cause some trouble for them). What I don’t want is Robert to suffer the consequences of my being pushy so I pick and choose my battles.

Robert’s ISP meeting was held last Thursday. That’s “Individualized Service Plan” for those who don’t yet speak Care Home Code (don’t worry if you don’t – I’m still getting used to these acronyms).

The night before the ISP, I hunkered over the first ISP and reviewed my notes from the months after Robert’s move-in. Reading of the struggles when Robert first moved into New Home was depressing but I wanted to focus on what objectives were set out for Robert at that time and how he seemed to be accomplishing them. I also made a list of issues to discuss with New Home so they can do a better job and be held accountable (the Regional Center and his Recreational Therapist were involved in this meeting so there were witnesses!). I’d love to bring up all the problems I want solved but decided to focus on what can be fixed now.

The House Manager was not invited to the meeting which I found odd. Nurse Ratchet was not at the meeting which I found to be a relief. The person who is probably the least hands on with the clients (we’ll call her Ms. Z.) was at the meeting and her lack of knowledge about what actually goes on at the home became evident very quickly.

Her priority is not the “consumer” but the paperwork she has to complete and send in to her boss.

Robert’s morning routine. Robert dawdles. He’s on the OCD side. He takes 2.5 hours to get ready in the morning (grooming, dressing, eating, grooming again). He’s missed the bus a few times but the House Manager worked with me to create a system that works for Robert and he hasn’t been late since.

Ms. Z. insisted this was still a problem and suggested a visual chart for Robert so he could see all of his morning activities and when he’s supposed to do them. Did she just take some sort of continuing education class that presented this as the Greatest Idea Ever? A chart Robert has to spend time looking at and deciphering is only going to delay him further. I explained that House Manager came up with a good solution and that is working. The problem is fixed!

She wasn’t satisfied. She wanted to write down a plan (other than the one I told her about, apparently). Someone suggested Robert shave when he showers at night. This will disrupt his Jeopardy and Wheel of Fortune watching, I said, but then it was suggested we get him DVDs of those shows so he won’t miss them.

Ms. Z. sat with her pencil ready to write down this complicated, expensive and unnecessary plan. I reiterated this is no longer a problem to solve but if they really want to try something else, then that would be fine. I only agreed because (1) the television doesn’t work right now so Robert can’t watch his shows anyway and (2) the other plan will actually still be in effect and this new process will not interfere with it.

Ms. Z. discussed other “objectives” and told me how Robert was performing on them. Percentages were assigned to each of these tasks as if he were being graded on them. It seemed to me he was accomplishing what I would expect him to accomplish and if they want to grade him on his progress, then go ahead. I’m not looking for straight A’s here.

I discussed a few problems I’ve noticed lately when I realized I didn't think Ms. Z. was being honest with me. Does she get a bonus for that, I wonder?

Television. The television doesn’t work and hasn’t for about a week. When I first mentioned this to Ms. Z., she feigned shock as if this was the first she had heard of it. Two seconds later she was explaining her company no longer pays for cable because their budget was slashed by 10%. We discussed how they could get television again (a converter box or me paying for a cable box for Robert). Ms. Z. is supposed to look into getting the converter box (although, as of today, she hadn’t done so).

Today, I politely explained that not having television was interfering with Robert’s ability to practice his religious beliefs (since he watches church on television). That should get them to spring into action. Yes, I can be a PITA (another acronym but I’ll let you figure this one out).

Air Conditioning. I reported the a/c doesn’t appear to be working in Robert’s room. It was very hot in his room during one of my recent visits. Ms. Z. declared the thermostat is always set to 72 – 74 degrees and I burst out with “There’s no way!” (I actually didn’t mean to be so contrary but the statement was just laughable!). One of the aides had already told me the thermostat is set to 78 degrees and is under lock and key. The actual temperature in Robert’s room was in the 80s so I suggested they have maintenance look at the unit. Ms. Z. at least agreed to do so but as of today reports that “it’s fine.” I told her “no, it’s not” because the unit was on but no air was coming out of the vent in Robert’s room. I asked her to have it looked at again. We’ll see.

We discussed how New Home had run out of protective briefs for Robert and asked what procedures were put into place so that wouldn’t happen again. The supply company was blamed and everyone was assured it was a one-time issue. I decided against mentioning the time New Home ran out of toilet paper because I realized House Manager would take the fall for that and I need her on my side right now. I pick and choose my battles while doing my best to hold New Home accountable.

Here’s a tip for New Home (and all the other Care Facilities out there): how about remembering there’s a person behind all that paperwork.


Fiona Stolze said...

What a job, having to navigate these meetings without exploding in anyone's face Trish. And it's hard when, as you say, you don't want to mess things up for Robert.

When you wrote that Robert needs 2 1/2 hours to get ready in the mornings, that really put it into perspective for me. Doing these negotiations you so need everyone to be totally honest. It's so hard when you know that the other person is choosing not to be as truthful as they could. It doesn't make anything at all easier and justs ends up wasting time and patience. Straight forward communication is the way I prefer it myself.

Picking and choosing your battles is a very wise decision, Trish. Life is a dance. x

Fiona Stolze
Inspired Art and Living

Trish Hughes Kreis said...

Fiona, Wouldn't it be great if everyone just would communicate directly and honestly? It's difficult to believe Robert is being well cared for when I know people are being less than honest. Robert is definitely a creature of habit and routine and, usually, wants to do things on his own so his morning routine takes a while. :-)

Anonymous said...

You amaze me. I know well how frustrating being a caregiver can be. You handle it better than most. Like I said, you amaze me.

Trish Hughes Kreis said...

I don't know how amazing I am but I appreciate your support. I really think anyone would do what they can for a loved one (and see many that do).

Heidi Alberti & Atticus Uncensored said...

oh Trish, you know I'm a PITA too sometimes -- but with some situations (New House, health insurers, bad public policies, etc...) you Have to be the squeaky wheel to get the grease, so to speak.

I totally admire that you are able to keep your cool (most of the time :) ) and carefully choose your battles. I tend to get overly emotional and Really have to put a lot of effort into remaining calm. (while internally I am screaming at the ineptitude, cover-ups and stupid bureaucracy!)

Kudos to you Trish!

Heidi & Atticus
"commentary to give you paws..."

Trish Hughes Kreis said...

Thanks, Heidi! Being the squeaky wheel doesn't come naturally to me but I'm definitely getting better at it. It's actually coming more natually the more experience I have with it! :-)

Sherryl Perry said...

Wow! I always thought an ISP was just an Internet Service Provider. :) Thankfully, I have't had to learn how to navigate the health care system yet. Robert is very lucky to have you as his advocate. It must be difficult at times to not alienate Robert's care givers while still seeing that his needs are fulfilled.

Trish Hughes Kreis said...

Sherryl, Your comment made me laugh! ISP for Robert means Individualized Service Plan. :-) You hit the nail on the head - I do feel like I'm walking a tightrope between the ensuring Robert has good care and not making the home upset (which would affect Robert's care). It's a juggling act and I don't even know how to juggle!

Rita said...

Wow, I am in awe....seriously. How you do it all AND keep it together...simply amazing. It would help if all parties would make the meeting so you can be sure your on the same page, and I totally get needing to pick your battles, and not wanting Robert to suffer from your ridiculous as that sounds it is reality...sadly!! Accountability goes somewhere...and you are doing MORE than your share...its time they did theirs. I find it horrible that they would just cut off tv, and the air not working...and be so blase about it...ugh. I hope you continue to be a PITA, as I am, and that you make lots of progress....fingers crossed!!! Sending hugs,

Rita Brennan Freay

Trish Hughes Kreis said...

Rita, You nailed what bugs me the most: their blase attitude! Goodness, let's act like you care, people! It's the upper management with the attitude problem. The people that are hands on with Robert and his roommates are great. I appreciate your support and can use all the hugs I can get! :-)