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.