Okay, so where we last left off was...he was declining and the clock was beginning to wind down.
Last week Hospice completed another evaluation and felt that we were probably at the One Week point. What happens then is they see him daily and have phone check-ins with the staff and we are put on alert that it's quite literally go time.
As of right now, he's in the end stages of dementia and death. He's lost most of his speech, he didn't recognize Kevin nor his advocate, he's not taking food/water/meds. He either declines, spits it out or coughs it up or says he's already eaten even though clearly has not. At that point, hospice felt like qualified for the week timeline. Since then, we learned that his eyes are turning yellow, which indicates liver failure. So it is progressing.
Except.
Except, the facility staff was not fully cooperating with the hospice plan. Super frustrating, especially when they've called us six times in two weeks to tell us that he fell.
RIGHT?
He's fallen multiple times and no one understands how that is possible. It take two people to move him and it's a struggle. Our guess is that it's the hallucinations that gives him super powers. Then they eventually shared that it wasn't a fall as much as a slide to the floor but they still have to qualify that as a fall. To which we asked every time: why isn't he medicated so he's not agitated? We would get a variety of answers.
Sorry for the permanent scar I'm going to put in your imagination: they moved a third bed (against our wishes) into his room with the plan of moving a third person in there. Well, their karmic payback was the staff finding him NAKED laying in the new bed. Yeah.
So, after fall #4, it took a stern phone call asking why the facility would countermand Hospice and now he's in a new room. And the bed is moved and lowered so he can't just roll out of either side. THEN he used the bed table as a walker and fell but this time he just fell back onto the bed. Sigh.
Additionally, we made it a family rule not to wake him for any reason. This was a struggle when we had Mom in hospice and reminded everyone that it's for the best.
We've had the You Can Go Now conversation twice. Once with me and Kevin and once with just Kevin He said to both of us - in a rare moment of clarity two weeks ago - that he was ready to go and didn't think he would be here but for a few more days. He said something similar to Hospice and said that he had "an appointment" the next day So we waited with baited breath to see how that played out. He's still here. He says he wants to go be with Mom and we're all "Well, go then, She's waiting!"
At the beginning of this, he lost his phone so we suspended the line. There's still $150 owed on a stupid flip phone so I asked Verizon what we could do and they said "Pay it off" Since then the facility found it under something in the bathroom. Now I'm waiting for him to pass then I'll go to Verizon with the phone and see what they can do. Still, probably nothing but I need to try. Also, what am I going to do with a flip phone?
Somewhere along the way, he had gotten a 2nd Amendment tshirt. It's not his, it's not his belief and it annoyed me. But I let it go. Until he was wearing it the other night. I emailed the social worker and asked her to please find that shirt and throw it away. I "joked" that if that's the shirt he ends up wearing "for all eternity" it's going to be awkward.
- There IS a lack of education with staff about the hospice process. Stunningly.
- There is a lack of communication Between staff members.
- The staff who care for Dad love him and are really having difficulty letting go.
- The Executive Director -in my opinion - is either underqualified or has a Rule of Law vs. Intent of Law kind of mindset. Perhaps both because often one feeds the other. It feels like they are very concerned with liability and rule violations.
- Thus the "keeping an eye on him" instead of having him fully medicated and sleeping.
- Just the sheer amount of staff turnover on all levels in that specific medical discipline creates a Groundhog Day of information sharing
After restating expectations with what felt like everyone in the building, she phoned to update us with what was happening. In support of what the hospice nurse experienced, Kevin shared that every time the facility calls us to tell us that he's fallen it's often during or followed by "So we have him hanging out at the nurses station or the rec room or down in the cafeteria."
All of which is inappropriate. When he was initially there, he abjectly refused to do any of those things and now that he's not able to refuse, they are doing it for him. Under the guise of "keeping an eye on him so he doesn't fall" Upon hearing this, it upset the hospice worker even more. What they're supposed to be doing is methodically medicating him so he's not compelled to get up, be awake or do anything other than be cozy in his bed. So the next step was she was going to have a nurse stop by Saturday, giving them one day to get their sh*t together.
But she doesn't know US. At first, I was going to call and request a Care Conference, which the facility hates. It's a meeting with all staff who work with the family member; them providing a status update and family sharing concerns then a plan in place is created. (write that down, for future list. The mention of it solves problems rather quickly)
Instead Kevin phoned the social worker and just let go. When he is "wound up" it is a thing of beauty. He will verbally disassemble someone before they've even realized what is happening. He asked why they weren't following the hospice plan, why they kept "poking him with a stick" to make him eat or participate in activities and that it felt like they were playing Weekend at Bernies with his dad.
I tell you, when he told me that, I couldn't breathe. WEEKEND AT BERNIES. Mygawd. Because that's exactly what was happening. They were having all of these expectations for a hospice patient, days from death, because: reasons.
The social worker agreed with us and with Hospice but indicated that the administration was the issue. (which was the situation last time) She transferred Kevin to the Nursing Director and Kevin started from scratch, listing all our concerns, their response or lack thereof, and what our expectations were moving forward. Medicate him fully, let him sleep, "stop poking him with a stick" and stop trying to feed or entertain/move him. Let him die peacefully.
The Nursing Director took all the information and indicated that she was going to go meet with the staff and with the administration to straighten this out. She would phone back in an hour.
And she did. All of the accommodations have been put into place and she apologized. I mean, that is really something. But we didn't hold our breath, we've seen this episode before.
This morning I texted the Hospice nurse to phone Kevin because we had an update. A few hours passed and they spoke. Unbeknownst to us, she had already gone on an official visit today to ensure that all protocols were put into place, which indicates her level of concern. She was very pleased to report that they had. Then she let Kevin tell her what had happened.
She too laughed heartily at the Weekend at Bernies reference and thanked him for advocating so hard for his dad. There will be another nurse visit tomorrow then she will return on Monday. Another Monday to evaluate and reset the clock. But she really feels like if people would just leave him alone, it won't take long.
Later today, the Hospice Social Worker phoned me to check in, not just as a regular check in but because she was also at the facility with the hospice nurse and saw everything firsthand. They were concerned for us and just the impact this resistance has had on us overall.
I told her all of the above and when I got to the Weekend at Bernies part there was a few beats of quiet -enough to worry - and then she LAUGHED. "That paints a picture, for sure. I know exactly what he's saying" and indicated that she would share that with the staff as well.
Then Kevin just phoned after a visit with his dad. Upon arrival, he was sleeping so Kevin talked with the staff. Before leaving, he checked one more time and his dad was awake and eating pudding. Surprisingly. He was kind of coherent but remained in the wrong timeline. Then when a "cute" nurse/aide/worker came into the room he announced that he needed to go to the bathroom.
This had me stumped again because...a) who woke him? b)who gave him food and why? and c) he's supposed to be in diapers. Kevin didn't have any of these answers because he was fighting for his life trying to navigate himself through this mess in the moment.
Then Kevin also reported that as the aide was taking him to the bathroom, she asked him if he wanted to go to the cafeteria because it was dinner time. W.T.A.F. In the moment, he just wasn't able to approach the staff to ask.
Now it's Saturday and Hospice phoned again. They had a visit with him and he was sleeping and did not rouse. So, in an awful way, that's good. They felt that Kevin's visit could have been what they call a rally. (which happens at the end, the patient suddenly is "fine" for a few hours) We shared our concerns about Kevin's visit and he said he would follow up with hospice staff. He suggested we phone the facility to emphasize Do Not Wake Him Up, Do Not Get Him Active, LET HIM SLEEP.
Another phone call to the facility was made and we spoke with the day nurse, who is very familiar with what is happening. She was horrified and apologized. We requested that signage be put up saying Do Not Disturb/Do Not Wake. She said that it shouldn't be necessary (scoff, because: seriously) Then I "jokingly" said "Please don't make me come down there."
Sigh...so that's where we are. It could be any hour now, but no longer than a few days. If people would just leave him be. He's ready to go, we're ready for him to go. It's time.
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