Happy March

 

Weekend at Bernies - A Raising Parents Update

 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.  

So, that's been challenging.

And then the universe said "BET"

Hospice completed another visit on Wednesday - as we're doing three visits a week now instead of two - and the facility had taken away accommodations such as the fall mat and had him sitting in a wheelchair at the nurses station so "They could keep an eye on him."

Have you ever seen/heard a Hospice worker lose their patience?  The answer is no because it just doesn't happen.  In this instance, she lost her patience.  She educated the staff, again, educated the social worker, again, and then went toe-to-toe with the Director of Nursing.

They had lots of reasons why they were doing what they were doing and it's not all nefarious or negligent. (but, a little negligent)  A listicle:

• 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.

Sleep Through It - A Raising Parents Update

 Good Morning poppets!  My apologies for falling off the face of the planet but I needed a moment.

So, updated update:

My father-in-law is on Day 43 of Hospice. He declined suddenly about a week ago and while we should have been prepared for that, we were not.

It started as him having grand hallucinations, seeing dead people and places we can’t see.  But he's been really happy and relaxed so that was the overall goal.  His episodes of consciousness are fewer and further between.  He did not recognize his "girlfriend" the social worker earlier this week.  He did not rouse for his advocate whom he adores or the Hospice nurse yesterday.

There has been So Much Discussion about the hallucinations, after becoming frustrated I said "We need to choose a lane: do we want him hallucinating and happy or lucid and miserable?"  And also, we don't need to wonder what caused them. At this point, it just doesn't matter and he's happy and relaxed, which was the goal.  He's "seen" his wife and his siblings, he's happy.  He's said he's ready to go.

In what seems counterintuitive, he’s fallen twice since last Thursday, three times in a week total. They’re putting precautions in now to prevent that. But originally they said they couldn't so Hospice took this as a teachable moment and they're putting them into place now.  We added "If we have to move him to a different facility, then we might need to." which is usually a motivator for change. Sadly. It is thought that it’s the hallucinations causing him to fall as he’s too weak to sit up or stand on his own. But the hallucinations are keeping him happy and pain free so it’s a sad trade-off.  Also, it won't be long when this won't be an issue.

Meanwhile, we don’t know what damage is happening with each fall as he can’t report if anything is wrong.  It's jarring because a persons default reaction is to "Run blood tests! get an xray! Take him to the ER" but we're past that point now.  Anything that happens now, just...happens.

Hospice is working with the facility to medicate him more consistently so he doesn't get agitated or upset.  He was spilling milk and the aide told him to stop then tried to help and he kicked at her. Yeah.  So they have been Encouraged with a capital E to be consistent with his meds. However, I don't think it's negligence, I think they genuinely love him and are struggling with the process.  The decline was so swift, it caught the staff off guard as well.

Also, though, when this is all said and done, we're going to request that staff gain training on the Hospice process as they seem surprised at things they shouldn't be.  (taking him off his regular meds, hallucinations, questioning the sudden decline while on Hospice)

Oh, let's talk about that for a minute too.  He was put on methadone, which is a regular thing when a person enters hospice.  It is like a weighted blanket in pill form, it soothes the body and the brain and takes it out of the Fight or Flight Mode.  It addresses not only physical pain but existential pain. Once his body acclimated to that dose - and it took a few adjustments - his body relaxed, his brain calmed and he's exactly where we want him to be: cozy in bed, sleeping, not in pain and not scared or sad.  

So, if you're in this situation ever, don't freak out if they want to put your loved one on Methadone.   It's a good tool to use. Remember the goal is always that the person is calm, not scared, and comfortable.

With all those developments, he's eating very occasionally not only because it seems he’s lost that ability, as in he thinks he’s already eaten or simply lost the motor skills to eat, it's a sign of the body preparing itself for the next step.  He’s drinking very little, probably for the same reasons. He told the siblings he ate almost everything off a clearly visible fully loaded dinner plate almost two weeks ago, an example of hallucinations that can occur.  He's declined his favorite things like ice cream and pizza.

The hospice nurse reported that he's markedly declined each visit that she's seen him and he's in the middle stages of death now. With all of these things happening, it’s a relay race to death…will it be a blood pressure drop? Will it be starvation? Will it be a brain or internal bleed from a fall?  Or will it be a wild card event that None of Us Will See Coming.  Charts and graphs and stats indicate it’s within two weeks. But the body is a weird thing, it could be tomorrow or March.

I did accidentally make one of the nurses cry. When they reporting about being agitated and that he'd kicked at an aide.  I explained that this was very uncharacteristic for him and it's hard to witness.  I gave an example of "He was such a good dad.  I was on bedrest for sixty days with a broken leg and he came over every single day to check on me and bring me things. That's the kind of dad he was."  

Because unfortunately, skilled nursing staff only see our loved ones as these broken, aging out individuals.  They don't know the person they were before.  It's important to share details, have photographs, and talk about how they used to be.  Not only to humanize your loved one as a patient but to give things to talk about or mention between the staff and your loved one.

Meanwhile, I've gotten out the checklist of things to do once this finishes.  I'm almost done with his obituary.  I'm trying to gather photos but I'm finding that to be Too Big of a task right now. 

So, that's where we are.  This is the last parent for me, I will be an orphan after this concludes.  And that feels unmooring.  I hate this timeline.

Bingo Card

Swistle mentioned doing New Year's Bingo Cards as resolutions. (link here)  It kept popping into my head after reading it so now, halfway through January, here we are.

I had a few ideas pop into my head, then I reread Swistle's post and borrowed a few.  That prompted my brain to think of a few more but then I was stuck.  Finally, I consulted the interwebs and filled in the remainder; only about three of them though.

So, like always, play along or just follow along.  I just needed something positive to focus on for a while. Goal setting is also a good thing, I guess. lol  

I'll try to do like a quarterly update of progress.

Chatty Email, because OMG Seriously

I've plenty to say and no energy to say it. 

Meanwhile...

Today’s music stuck in my head is Morning Train.  I didn’t like this song 40 years ago and I’m enjoying it less today. (link)

I just browsed the college community education catalog to dream about any class that I could take. I have zero intentions on following through, yet I persist in looking at the catalog when it arrives; as if I’ll suddenly become a different person.  Although there is a free Medicare class that I might take as Kevin is planning on retirement in the next few years.  That’s the stage my life is in right now and isn’t that jarring and weird.

I still have color Christmas lights in my office window and around my monitors on the desk.  There’s some burnt out bulbs and that’s okay.  I relate with them right now.  I just need some whimsy and light gdammit.

Also, I made it through the holiday without buying holiday décor.  Then, the clearance sales got me in their grip.  It was just a few trees, some LED ones and a candle.  Then there’s the birds. Have you seen the birds?  Well, they were at the Target and now other stores are selling them.  I bought a grumpy little bird in a red coat at Michaels then got a Queen and Consort at the wallyworld.  I did not buy a King because: no.  But they’re more Winter than Christmas. But then I just took out my Valentines Day birds.  I have issues.

I ordered a Blind Date with a Book online again.  This one was a “Surprise Me” category and I got a spicy book; including a spicy cover. (A Rogue’s Rules for Seduction – a Last Chance Scoundrels book)  While this order wasn’t a choice I would have consciously made, I like the allure of opening these mystery book orders and getting the stickers.  I am a child of the 80’s after all.

It’s 50 degrees today and I might mention that it’s January in the PNW.  This is unnatural, for sure.  Social media memories show that we had six inches of snow a few years ago.  I would enjoy snow right about now.

Last year I received a journal in my favorite color and I’ve put it to use in an interesting way.  I made a list of screenshots from my phone into categories: Trips I want to take/places to see.  Hikes I want to do.  Ideas to try.  Therapy notes of ideas/quotes that I’ve read on the social media.  I’ve pasted in postcards and stickers that my BFF has sent me over the past year(s) to keep me on the right side of the dirt during all of this chaos.

Then I saw there’s a Junk Journaling trend on the social media, which is very similar.  I like the idea because it encompasses chaos.  Write a sentence a day, or a paragraph, depending on your mood.  Tape a photo on that page, or a menu or receipt to remind you of that particular day.  Write a quote or a song lyric.  Just something to acknowledge that day or week or month.  Anyway, I thought that was a good idea for those of us who WANT to journal but just aren’t wired that way.

Kevin gave me a cup warmer for my desk and I have to admit, it’s pretty awesome. As a result, I tend to drink more coffee in the mornings now.  Before, it would get cold and I’d just dump it down the drain.  Now I can’t believe that I didn’t do this sooner.  It feels lazy because I work from home but it feels necessary if one works in an actual office.

We’ve watched two things that we really enjoyed after a long drought of television we both enjoy.  His & Hers is TENSE but good.  There was a little yelling of “C’mon, really” but overall we really liked it.  On the opposite side of the spectrum, The Man Inside is just perfectly lovely.  Funny, charming, low key emotional.  We’re halfway through the second season now.

I made Jambalaya!  Well, not totally from scratch.  I saw a recipe on the ticktock and asked Kevin if he thought that he'd like it.  He said he didn't want sausage or kielbasa so I went full Sheldon Cooper and used hot dogs.  I used Zatarain and added red & green peppers, onions, and diced the hotdogs. Also, it said to use chicken broth instead of water (?)  The first time it came out perfect and we really liked it.  The second time I added too many peppers and hotdogs.  It was still good, just spicy and hot-doggy.

Okay, hopefully this provided a few minutes of distraction for everyone.

2025 Recap...Reluctantly

 It’s here! The New Year Review Questionnaire!  You could do it too, it can be a good or fun way to look back on your year. Although no one really wants to look back at these past years.  Sigh, Let’s do this anyway.

1. What did you do in 2025 that you’d never done before?

Had to call a plumber.  The family & friends possess many skills and plumbing is not one of them.  $835 later and I don’t have to think about plumbing ever again. (knock wood)

2. Did you keep your new year’s resolutions, and will you make more for next year? 

• Paint doors – Nope, I can’t decide on a color
• Debt Reduction – also Nope.  This is the Year of Broken Things
• Writing & Reading – Improved, not achieved

My resolutions for 2026:

1.  Just get through the year.  I have low expectations for anything good.

2. Paint the doors,  I’m trying to avoid resale grey and I like sage or black but I dunno

3.  Write more (no, really)

4. Did anyone close to you give birth? 

No, we are out of that particular milestone for a while

4. Did anyone close to you die? 

Friends but no one close.  Celebrity deaths this year however…sigh.

Wait, close call for my father-in-law over Christmas…it could still happen.  

5. What states or countries did you visit? 

Oh Canada and no other states but have traveled from one end of Western Washington to the other.  We were supposed to go to the Oregon Coast but we just haven’t made that happen.

6. What would you like to have in 2026 that you lacked in 2025?

Peace.  In all of the ways.

7. What dates from 2025 will remain etched upon your memory, and why?

Kevin running a personal best at the track and all of our friends there to watch and celebrate with us.

8. What was your biggest achievement of the year? 

This won’t make sense to some, I finished Monica’s Closet. This has been a want and a to-do for literal years.  (bloggity post upcoming, stay tuned)

     

9. What was your biggest failure?

 Writing and debt reduction.  So much fail

10. Did you suffer illness or injury?

Another laser surgery on one eye. The other eye will be done sometime in 2026

11. What was the best thing you bought?

Honda CRV.  It just made everything so much easier.  Who knew that I would finally age out of driving a truck….wait, that was in 2024.  Ummm, then nothing.

12. What is the best thing you created?  It can be a spreadsheet, organizational thing; it could be a human!

Along with Monica’s Closet, I have been working on making the office cozy.  I’m nearly there.

13. Whose behavior merited celebration?

Kevin, for keeping it all together when the world keeps throwing punches

14. Whose behavior made you appalled and depressed?

This will be my answer perhaps for eternity: The entire GOP & its brethren

15. Where did most of your money go?

Ugh. Bills

16. What did you get really excited about?

It just wasn’t that kind of year again. I was mildly - but skeptically - excited about the election.

17. What song will always remind you of 2025?

The Big Goodbye - AJR

 Would if I Could – Ernest

I am Not Okay – Jelly Roll      

18. Compared to this time last year, are you:

– happier or sadder?  Sadder. And Angrier.

– thinner or fatter? Same somehow.

– richer or poorer? Poorer but still remarkably lucky

19. What do you wish you’d done more of?

Writing.  I always wish that I had spent more time writing

20. What do you wish you’d done less of?

Paperwork & phone calls

21. How did you spend Christmas and the New Year? 

• Eve –  At the hospital then at home. We had cereal for dinner.
• Day –  Next door with the fam and it was lovely, despite it all.
• Eve –  Home, low key
• Day –  Home, low key

22. Did you fall in love in 2026?

Every day.

23. What was your favorite TV program? 

Shrinking

24. Do you hate anyone now that you didn’t hate this time last year? 

Nope, not that I'll discuss here.  lolsigh.

24. What was the best book you read?

Jane Eyre.  I had read  it years ago then joined my BFF’s family’s book club.  I’d forgotten how much I like that book.

25. What was your greatest musical discovery? 

Greylan West

26. What did you want and get?

 Working from home for the foreseeable future

27. What did you want and not get?

 Gosh, I can’t think of a single thing. We are also at that time of our life.

Well, also, I really wanted a certain “president” in prison. 

28. What was your favorite film of this year?

I don’t really watch new movies anymore.  The Life List on Netflix was good.

29. What did you do on your birthday, and how old were you?

57 – I did nothing.  No chores, no work, just ran two errands in the pouring down rain then read/slept/watched television all day.

40. What one thing would have made your year immeasurably more satisfying?

Tiny bit less death

41. How would you describe your personal fashion concept in 2026?

This is a repeat: Lazy…Yoga pants and hoodies or tshirts, no shoes unless walkies

42. What kept you sane?

Walkies with Lucy.  Stupid little walks for my stupid little mental health

44. Which celebrity/public figure did you fancy the most?

44. What political issue stirred you the most?

The Election 

45. Who did you miss?

My mother-in-law, still

46. Who was the best new person you met?

Being a feral hermit, I don’t usually meet new people now. The new IT guy at work is nice, I guess. lol

47. Tell us a valuable life lesson you learned in 2025

It can always get worse.