Tattling - A Raising Parent Story

 Okay, first, Kevin brought home the plague from work and I've been sick for almost two weeks.  Like, not snuffly, use this as an excuse to be lazy kind of sick but lay in bed and hope for sweet, sweet, death kind of sick.  So...yea, Kevin.

Also, feeling a little better if you ignore the tuberculosis cough.

When we last spoke, we were beyond frustrated with the facility and I had reached out to the delightfully old-fashioned named Ombudsman.  (Kevin just calls them the ABCD's)  I left a voicemail, then followed up with an email that included an itemized yet summarized list of our concerns.

They phoned me within two days and was all "Um, we need to meet you like right now"  We agreed and made the arrangements...for the next day.  They were not playing around. At all.

First, they wanted to meet at the facility, but without the staff.  We asked if we could meet off-site as we didn't want to inflame the situation further.  We met at a little cafe nearby instead.

Cut to us meeting two little old ladies who are adorable, yet formidable.  They were both retired nurses and are Ombudsman VOLUNTARILY.  They volunteer to defend this vulnerable population.  And they're both named Jo.  

Two hours later, we have a plan.  We spent two hours discussing all of the issues we've experienced and how the facility has or has not handled them.  One of the Jo's does not have a poker face so we witnessed her dismay and horror on multiple levels.  The other Jo is more matter of fact and must of said "Oh no. No, we're not doing that."

We left feeling heard and supported and felt a little less crazy.  Because it is crazymaking that the facility is failing at very basic tasks and continually arguing with Hospice and us, not only as family members but as Powers of Attorney.

They said something that one of the social workers had mentioned before "He chose you two for a reason."  Because when this was first completed, we were relieved to have it done then hoped we would never need it.  Then we needed it and was doubly relieved; only to be in a space of thinking Why Did We Even Bother.  Now we're back to relief.

So, two things to know:

• Once the person is incapacitated, YOU are the person legally and ethically.  It is meant to be treated no differently than if the parent themselves were saying Yes or No.
• If there are two people listed as Powers of Attorney, the #2 person is just as responsible as the #1 person.  Don't let people tell you that it's not.
• Wait, three things:  Power of Attorney is worthless upon death. The death certificate and will replaces the Power of Attorney

One of the things that we needed to provide was the care plan from the facility and from Hospice.  Hospice sent theirs almost immediately upon request.  The facility took three phone calls.

The Ombudsman reconciled both care plans to ensure that everything that Hospice had put into place was actually being implemented at the facility.  Spoiler Alert: They had NOT.  sigh.

They said that they would get together with the team and then we would all meet together to come to an agreement then move forward.  We were not looking forward to another confrontation with the facility.

A week went by and we just thought that it was taking longer than they planned.  Then another week went by and I was starting to feel disappointed.  I had it on my to-do list this week to reach out but: tuberculosis cough and sleeping.

Then my phone rang just now.  It was a Las Vegas number so I ignored it.  Then there was a voicemail and a follow-up call so I answered.  It was the Ombudsman.

Well, it turns out that they skipped over the meeting together, took us out of the equation, and just met with the facility.  It sounds like a case of You Guy Are So Terrible At Your Job We Just Can't Even.

(they just forgot to tell us that part)

They've since met Kevin's dad twice and talked with all of the staff.  The care plans have been integrated and the facility is Well Aware that they have eyes on them.  Which explains why we've been getting regular updates from the facility.

Then we'll quietly touch upon the fact that Kevin's dad was having a really bad day, it's called Terminal Agitation.  He was combative with the staff and even with Kevin.  It's a milestone in the dying process but awful nonetheless.  They phoned us to let us know and we learned that this is a sign that it's starting to happen.  They're setting the clock to "up to two weeks but maybe earlier."

Just in time for us to finally have the facility on board.

My point though is: add this to your notes for Future You.  I believe all states have an Ombudsman.  program like this, an agency who oversees skilled nursing facilities and comes to families aid when needed.  It's not the same as licensing or Medicare/Medicaid, it is an intermediary.

I wish I had contacted them sooner but these things happen the way they do.

This Is Going Well - a Raising Parents Update

 Okay, so.  Update.  

I'm exhausted, we're exhausted. This feels like it is never going to end. 

I remember this feeling with my mother-in-law but this is different.  She was aware of who we were right up until the end.  My father-in-law is not.  He's trapped in a failing body and brain that refuses to give up.

It's been three and a half months since we enrolled him in Hospice and not one minute of it feels like it has gone smoothly.

A quick recap with an apology to friends who've already heard the story:

The overall update is he has "plateau'd" and is just...hanging around. Hospice has reverted back to twice a week visits when we were up to nearly daily visits.  Basically, almost back to square one.  Almost.  After being considered in beginning stages of active death,  he's not only still alive but for a while, he had improved a little bit.  Fleeting moments of clarity, been eating a little bit, and we're not sure what the cause is.  It's not unheard of in hospice but it is unusual.

Some of the possible root causes:

The facility is consistently inconsistent with his meds. We feel like perhaps they're not being as diligent as they should be, thus this rebound.  They were waking him to give him his medicine,  while supposed to be given them crushed in a syringe, so that doesn't require full consciousness.  Think giving a teething toddler tylenol so their temp doesn't spike while they continue sleeping. Instead, what it appears the staff are doing with meds: they are turning on the big light, sitting him up, interacting with him so of course he's awake.

THEN there was the accusations of him being over-medicated.  Yep.  Accused Kevin over the phone on speaker phone then accused Hospice.  Sigh.  With our permission, they reduced one of the meds and no big response has happened beyond being more agitated.  As in, tried to leave the facility. Twice.  Fell, more than once.

The facility states that "if they ask, we have to" so if he asks to go to the bathroom or to the cafeteria.  However, a) he's supposed to be in diapers and 2) how about some redirection and medication to keep him calm.  This is a good example of Rule of Law vs. Intent of the Law that we believe is happening with the administration of the facility.

We have been ADAMANT about letting him sleep, including the promise of a giant sign for his room and me standing guard all day.  It took two meetings to make that happen.

Additionally, there is inconsistency with reports of his consciousness.  Hospice and the advocate report he has been either unrousable or incoherent.  We have experienced the same.  Yet the administration reports that he's been verbal and active. He's going to the dining room, he's "playing" bingo.  They say if he asks, they have to accommodate him but we suspect that he's passively agreeing when being offered.  Because it will never make sense in my head how we went from "It will be soon...as in within seven days" to "We'll see..."  and, and, AND he is mostly non-verbal.

He's been refusing his food, drink and meds but then will eat just enough to sustain every few days. We learned that the aide has been helping feed him when he is cooperative.  He's been less cooperative, including getting a little combative; swatting at staff, turning his head, and pushing himself away.

Now, cue to two meetings with the facility administration.  One included the Hospice Nurse and the second including the brother and not me.  The first one was terrible and not productive.  It ended in the Hospice nurse reporting the facility to the hospice management for non-cooperation and obstruction of health care. Because: hospice is the medical authority and is medically liable, the facility should be able to do most anything that Hospice asks and other facilities DO cooperate.  So, while the facility does have their regulations, it feels like the facility is just CLINGING TO THEM without acknowledging that they are dealing with an actual human being and that they are dying.

The second meeting Kevin stormed the gates with IDGAF attitude and explained clearly to the executive director that he will match energy with the Nursing director, who we believe is the crux of the issues.  This resulted in a room change and as a result, new nurses and care plan.  So far, so good. 

And: the executive director has adjoining offices with the nursing director. She left the door open to the nursing director could hear every word and was advised not to participate.  (sigh)

We have considered moving him to a new facility but we feel like the time it would take to do it, this will be over.  Also that the trauma that will ensue is not worth it, especially knowing that They Know We Know They Know they have to do better.

In between all this drama, he was found unresponsive in the dining room.  His blood pressure had dropped and he was again showing signs of active death.  He's still here and that was two weeks ago.  His cardiologist told us two years ago that is probably how it will end, his blood pressure will plummet and not recover.  

So...we're waiting.  Visits seem to upset him now because he doesn't know who we are so we've stopped going very often. Kevin talks to the facility frequently for updates.  We're back to just waiting for a phone call.

Oh, one more thing: the facility recommended that we could a) take him on a drive b) sit with him and watch a movie or c) just sit and talk.  First, he's in hospice with advanced dementia so: no. (he weighs 153 lbs. down from his admit weight of 225 lbs) It takes two people to move him from chair to bed, etc.

Secondly, he's DEAF.  He isn't able to wear his hearing aides so he's cannot hear.  This was the biggest instance of them just not understanding the situation at all.  I kept wanting to ask them "Are we talking about the same person?"

Oh wait, in response to what to do when he's wandering the halls looking for his wife (he went into two rooms...yikes)  Their suggestion was to post the obituary where he could see it. I KNOW RIGHT.  That goes against what the experts suggest to do in this situation.  AND: he can't read.

When this is all said and done, I've got some work to do. I am setting sh*t on fire and Hospice literally said "Go get em!" If you've made Hospice mad, you have accomplished Something. Not a good something.

I have submitted an online complaint with the Ombudsman that oversees facilities in this state.  (that's actually been submitted now) Then I'm submitting our complaint to the Corporate Office of the facility regarding the administrations actions, and also to DSHS, and Medicaid/Medicare.  

Did you think we were finished? Oh no, silly thing.  TODAY. TODAY, this very day, the facility asked Hospice to add a medication to his regimen to INCREASE HIS APPETITE.  For the love of gawd and all things holy, WTAF.  Hospice begrudgingly called Kevin and asked and we said no.  Because he is dying.  Stop trying to stop the dying.