Okay, so...that didn't go as planned.
On the 22nd, Kevin received a call from the facility. His dad was very ill and the ambulance had been called. However, they were phoning him to ask if we wanted to send him to the hospital or leave him at the facility and provide comfort care until nature takes its course.
Now, Kevin is running heavy equipment at the time of the call and working on a deadline. To get a call like that was shocking. He said it was like "Whelp, do you want him to die or nah?" kind of vibe. Then the ambulance arrived and took him in the time of the conversation so it was a moot point.
Cue to me, laying in bed and watching a movie. It's winter break and I had zero things to do. Kevin said he couldn't leave work just yet and I reflexively said "Your brother is five minutes away from the hospital..." because he works nearby. Kevin said that he'd already called him and told him to get there right away. Okay, so that's a new development; usually he doesn't... participate, we'll say.
We disconnect and I'm processing what just happened. Then it pops in my head that I'm power of attorney with Kevin. One of us has to be there. I threw on some clothes and headed down there. To find the brother in the waiting room on the phone while someone from the hospital is waiting. WTAF.... I approached and said "I'm with him, how can I help?" She needed to register him so off we went and That's Why I needed to be there. The sibling would not know anything helpful in that situation.
Then they lead me right back to his room in the emergency room. He was semi-conscious and they were doing all the tests. I answered questions and just waited. After a few minutes, the sibling came into the room and made a "joke" about leaving him in the waiting room. I explained that they lead me straight back and so...here we are.
Quicker than anticipated, Kevin arrived and the doctor shortly thereafter. He was incredibly kind and clear about the situation. He asked -in a much more professional manner than the facility - "Do you want us to provide comfort care or life saving protocols?" The f-i-l's health was very dire and it was time for the big decision.
We chose comfort care and explained that he has dementia and that his quality of life was not great and rapidly declining. By the time we had this conversation, fluids, antibiotics and other meds had been given. So now it was a wait and see. Upon arrival, he was on his way to another realm, if you will.
The f-i-l roused at one point and asked for...wait for it...the social worker. Yeah. It turns out that he considered her his friend/girlfriend, we discovered about two weeks ago. So, that was super fun for us to experience. Then he returned to semi-consciousness.
We waited for a while then they indicated that a room would not be available yet so we were welcome to leave. It was decided that we would just go to the cafeteria and have lunch. We did that and it was an experience as Kevin and I keep discovering that we've had to assume the parental role in a weird way. More about that later...or not...
Upon our return it was determined that a room would be available later in the afternoon/early evening. They had him stabilized and there wasn't a reason for us to stay. I will say that this experience at the hospital was much better than any of the prior ones. Communication was better and they were much better at guiding us through the next steps. They indicated that there was no reason for us to stay unless we wanted to. Collectively we all were like "See you later then" Because we are exhausted.
We went home and rested. I monitored his MyChart but the information is delayed and we waited for the phone to ring. We phoned later and he had been transferred to the Critical Care Unit and continued to be stabilized. We tried to visit again and spoke with the CCU doctor. He was a little flip about the situation, I described him as finger guns. As in, "He's improving now but we'll phone you if he starts to fail but so far, so good!" It was 100% opposite of our experience in the ER.
The next day my s-i-l visited first and said he was fine. We went down about mid-day to find him sitting in a chair and eating lunch. We spoke to the nurse who reported that he's doing even better today. This is so awful because she was surprised and relieved and we felt surprised and a little disappointed. We're just in the headspace that we need to be done. AND the ER made it sound like it was imminent.
We went in to visit and...the vibe was off, again. Kevin went into his room first and I heard "Hello there, kid" which is his standard response. I thought "Well, that could be a good sign." It wasn't.
He was a jerk the whole time we were there. He was eating lunch, which was a salad and he hates salads, although Kevin wasn't sure he was eating versus just pushing his food around. He was non-communicative mostly. Kevin would ask him a question and he'd respond with a few word answer; always an underlying tone or vibe. He didn't remember my s-i-l visiting and complained that no one told him anything. So, all the greatest hits. Otherwise, we just stood there in silence. I excused myself to go to the bathroom but it was more to see if there was an attitude shift once I was gone. Kevin said there was not, at all. We left shortly thereafter, frustrated in every way.
Then the advocate phoned because she was notified that he was hospitalized. She agreed with the plan to discharge him to the facility under hospice care, which is a relief because this whole situation has us second-guessing ourselves. But she did indicate that one of us has to be there for the hospice intake because we're POA's. SIGH. I mean, we KNEW that but we just hadn't mentally taken that step yet.
Okay, now it's Christmas Eve. We met with the advocate after her visit with him. She said he was all in the My Kids Are Stealing From Me mode. I really thought the boys were just going to go back home without visiting him upon hearing that. But...the only "but" in this situation...is that I think the advocate is just a visual trigger for that particular issue. YET STILL ANNOYING AND FRUSTRATING. The boys got to meet the advocate though and that was helpful.
Because we learned something from the advocate: The f-i-l doesn't recognize how his participation or attitude carries over to how everyone around him reacts. Also, that he's getting SO MUCH negative attention and is perfectly comfortable being the victim in the situation. It was helpful to hear her say that and it was good for Kevin to hear.
After that we met the hospice facilitator without the f-i-l and explained that we don't know which personality we're going to get, that he has dementia and it's worse in the hospital. Then the normal coaching: speak loudly, look at him, don't use technical speak or big words, etc.
I stayed out of eyesight the whole time because we needed this to be successful. He was surprisingly accepting of the process. I'm waiting for the other shoe to drop but we'll see. She emphasized that he'd get a lot of attention and he wouldn't have to go back to the hospital ever again, and that just hit all the right notes with him. He's since asked the nurses about it multiple times and they've been positive and supportive about it too so that helps.
The nurses also reported that he's in a good mood but is constantly asking why he's there and when he can go back.
THEN the s-i-l phoned after she had visited with him. He made her sit right next to the bed and he "formally" apologized to her and made a big deal about how we all have to move forward. I'm just gritting my teeth while she's telling us because it will change in five minutes. Also, she's like, not even on the list of people he's mad at so that feels icky.
Later that day, hospice called to set a time to meet and told us that he'd already been discharged and is in a new room already at the facility. It felt odd but a relief that it all happened without us. We had to be there the following morning for step two of the intake process. He had agreed to hospice and hospice felt like it was a good plan, but this was the qualifying visit.
It's now the Day After Christmas.
We had the enrollment meeting and when we left we weren't sure he was going to qualify.
Firstly, he's fresh off of a hospital stay so he's better than he's been for the past few months. Secondly, he fakes it/doesn't understand/answers passively so nothing from him is accurate. Plus: dementia.
We told the Hospice RN that we don't know which version we get of him until we're there and that he alternates between being loving and hating us. Also we shared that it may take a few visits to get to see the actual state of him. But the facility was in agreement that it's time for hospice so that's good information beyond anything we could share. Overall, the appointment went fine. Fine is all I can muster right now.
At the end, the siblings left and Kevin had us stay for a minute. After all was said and done, his dad started asking questions about the process, indicating that he understood/retained very little information. We followed the lead of the hospice facilitator and emphasized that he would be getting extra attention, etc. He seemed to accept that, again, but I still keep waiting for the other shoe to drop. I know it's coming.
AND THEN, we had another non-apology from f-i-l. Again, prompted only by him. He wanted me to sit close to him and I didn't because we're in PPE due to his infection. I just passively agreed as he "apologized" and sung a little song in my head while occasionally reminding myself to make eye contact as he spoke. He trusts me and knows I take good care of him and I would never...and....
I just can't with that anymore. It's unhealthy and I don't care that it's "just the dementia". Kevin and I have decided that people who haven't experienced it tend to throw that phrase around a little too liberally.
We left relieved and dejected.
The RN phoned about two hours later and said he'd been accepted. It took some discussion and review to make a determination; which is totally fair and understandable. The deciding factor was the hospitalization and what landed him in the facility initially plus the length of time he was there; plus all the health issues he has, plus his advanced age
It boils down to he tested positive for Flu Type A, he has ASPIRATIONAL pneumonia (inhaled food or liquid), was in beginning stages of Sepsis, and now he's super way in the throes of dementia. All of this caused heart damage so that was a deciding factor as well. The timeline isn't immediate, in fact they emphasized that it could take a while or most of the hospice six-month window. We're okay with that.
Kevin asked how I was feeling now that the decision was made and I said "Relieved" It's no longer our problem, it's now the facility AND hospice responsibilities. Also, it's just a relief that there's an endpoint. Certainly, he could "graduate" from hospice and that feels like a real risk, but we know we most likely have a six-month window. Because really, he died way back when mom died. This is no longer our dad.
But, the adage goes is all it takes is one hospitalization to get the ball rolling in this situation. It feels like the ball is gaining speed at this point.
I explained to the RN that we went through this with my m-i-l/his wife and that it was beyond a positive experience. However, this is a completely different and opposite situation so our participation will be different. He completely understood and gave us "permission" to stay away for a few days to rest and let the process take it's course. It's soothing to hear that.
Now the communication will solely between the facility and the hospice workers. They will notify us of any big changes but otherwise, we're not involved. We told the hospice folks that we DO NOT want to hear anything about him being angry at us UNLESS it's saying "Hold off on visiting for a while". There is no need to intervene or support. Now they're only going to call us if there is a change or if It's Time.
And during all of this, the social worker at the facility was on vacation. She returns today to All of THIS.
It's only December 29th.
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