AGING PARENTS

oh sorry you already said that. Yeah, I see zero down side to hospice at this time. It isn't a one-way street--if you decided to do another hospital admission, he'd just discharge from hospice, do the hospital stay, then could go back onto hospice.

Danger with this plan is good chance of dying in the hospital without as much morphine as he might benefit from.

So the nurses and doctors were great but the case workers were useless. Spent all this time trying to find a new place for him only to tell us after they didn't know he was Medicaid and because he is, he has to go back to original nursing home and we have to work out a transfer with them.

Only alternative is bringing him home and we can't go back to that.

Now I get to break another promise to Dad because we were misinformed.

However we do know of a nearby facility with a bed and we're working on a transfer.

Hopefully it's not long. My AHCA complaint generated a mandatory inspection of the facility. Maybe the care temporarily improves. Idk.

We could have been calling and discussing this for two hours if we hadn't been misinformed. Now they're basically pushing us out the door.

I can file an appeal over the discharge and considering that to buy more time.

I just cannot take on more lifting right now. Mom has got to. I missed work both of my last few days because of this.

Appealed the discharge. We're doing this on our terms.

It's going to be denied because I don't have a truly valid reason to do it. But it gets us two days.

Mom met with the old nursing facility and they appeared shook by it. They are amenable to us transferring but plan to move him to a new room until then.

Stupid case manager tried to tell me if we lose the appeal, we have to pay for the days he stayed during appeal.

I've done Kepro appeals before and know we would only be liable from noon of the day we're informed of denial, not the days in between. So I told her that.

dad's much better today. the previous nursing facility, we are going to give another chance, but will be ready to move him to another at a moment's notice. they are giving him his old room/nurse back, and he was getting much better care in that room. but we'll be on top of them.

the idiot Case Manager here said he has to be discharged today, even though there's a pending Kepro appeal (it isn't finished - most times the Kepro case manager calls you and the facility around the same time, and nobody called me, so it's not possible.

Mom and I agreed we're not going to fight it this time because we think he's ready to go back, and I did it as a 'time-buying' measure. he ate a full meal today AND took the spoon out of my hand to feed himself four times. But I am filing a care complaint re: the case managers and their ineptitude because they have butchered the discharge and caused me to miss work yesterday and my mother a lot of distress, as well as my father. and they've had no accountability.

however I also wrote a thank you for all of the doctors and nurses because they were exemplary and it's only fair that I recognize good care too.

interesting twist - we couldn't ask Dad what he wanted to do last week when it looked like feeding tube time, since he wasn't talking. the assumption based on prior conversations was that he wouldn't want that.

we were wrong! he says if it's ever required, he does want it. and he told us two different ways. go figure.

it might be hard to tell but the overall tone of that post is positive.

nevermind, Kepro found out what they were doing and called them to say "what the fuck are you doing, you can't forcibly discharge him". we can still voluntarily do it and may still do it but they're getting told it's on our terms.

I didn't intend to set that ball in motion, but I had asked them about it .

i gotta learn to just let things go when they might cause further harm.

but then again, their confusion/lack of compliance w/ law isn't my fault either. they called mom instead of me because they feel I'm unreasonable.

they think I'm undermining things but it's like....they keep giving us wrong info. and they need to know they're doing this, because they're going to keep doing it to other people!

false alarm. Mom believed they were telling her he had to leave. they claim mom asked for him to go today (which is bullshit). I'm guessing the CM has no communication skills.

I told mom let's just let him go tomorrow like was originally planned and I'm going to cease any action because it's not gonna help anything. nursing home agreed to that and wasn't even expecting him today.

ooooi. now I will get eyeballs and be the 'difficult' son for one day.

💪

so the AHCA called me about my complaint about my father. they're doing an inspection of the facility to ensure that patients there are being treated properly, based on my complaints. they'll be making sure all patients on thickened liquid diets are getting them as expected, interviewing a few of the nurses who cared for my dad, and basically making sure what happened to him isn't happening to others.

admittedly I was focused mostly on my dad when I made the complaint, but the thought that many of these other patients may benefit from it as well warms my heart a little. most of the other patients don't get frequent visitors (possibly because of not having family in state) and there can be a tendency to neglect those patients because of that, even if subconscious.

interesting twist - we couldn't ask Dad what he wanted to do last week when it looked like feeding tube time, since he wasn't talking. the assumption based on prior conversations was that he wouldn't want that.

My dad made the opposite choice in 2000, after being on a tube for several months (he could no longer swallow, 8 years after a stroke). The latest tube wasn’t working and they wanted to situate a new one. He told my mom no more tubes, and we moved over to hospice where the caregivers were tbf wonderful through to the end.

that's the thing, based on all of the things dad told us before the stroke, I reaaaally thought he wouldn't want it. and maybe he feels differently when the choice is made.

dad's back in the nursing home today. Mom said it was electric there, like the staff was much more responsive across the board. The health care inspector I talked to on the phone was going to a sampling of rooms of people with thickened liquid and making sure it was all thickened. Including my dad's room.

he of course began choking on food again (not severely - he's always been an aspiration risk and this was a milder case per mom), but they actually called the doctor immediately this time. (it's ok, nothing majorly to worry about as of yet).

he's getting hospice services there now too.

I didn't think I had in me what I did this week. I don't think mom think she had it in her either. we have a strong familial bond and when we thought he was reaching the end, it just kicked us into overdrive. just like being on a battlefield and getting shot in the leg and using the adrenaline to get you to safety before the pain hits you.

we're in for many more tough weeks I'm sure - he'll have setbacks. all I wanted was for dad to see how much we love him because he gave everything for us and he's been asked to endure so much. I hope we can finally bring him to some peace for however much longer he's around.

You might not claim the description, but your post abounds with hard won wisdom.

brother shows up at nursing home and because dad's roommate was shouting a bit, he immediately messages me "WE need to move him, this place sucks".

I said "We? Ok, well get right on that, buddy - mom and I are spent, and we literally just got him situated here."

every place I reached out to this past week had no male LTC Medicaid beds available. the one that did has reviews just about as mediocre as this place. he doesn't seem to get that the types of rooms we can get are typically not private rooms and any of these Medicaid-accepting communities are likely to have dementia patients who might shout now and then. it sucks. I don't like it. long-term, sure, I want to find a new place, but he's been back for like 7 hours.

I told him in no uncertain terms that if he felt passionate about this, he can do it himself because mom and I don't have it in us. for the record, I don't like this place either, but we were told there was no way to set up an alternate destination due to the Medicaid dollars, that we had to do this on our own with the current facility and any new one we found.

swear to God he like acts so pious like he's the only one who gives a shit about dad sometimes - despite doing little of the work. I spent more time in the hospital this last week than I did working.

The good news: the near-term issues with my mother appear to be solvable, given sufficient supplies of money, energy, and willpower.

The bad news: while we probably have enough money, the required amounts of energy and willpower on my part look daunting from where I am right now.

Sending love and good vibes. Just thinking of the task at hand when having to take on a much bigger role with a parent can be terrifying.

My advice is to try and look at it like "what do I need to do to be successful today?" - and accepting some days those goals might not be met and that's ok. Also self-care a must - just being honest with yourself about how you're feeling and finding pockets of time to 'reward' yourself, whether it's going out to dinner, making plans with a friend, etc. Having things to look forward to makes it a little easier.

Wishing the best for you and feel free to vent whenever you need.

dad's improvements have all vanished since he's been back, and it's not the nursing facility.

this isn't unusual for someone in dad's condition, but was just naively hoping we'd have a week of 'recovery' after last week.

i'm doing ok. mom isn't and I understand - they've been married 50 years! i also have moments when I'm not ok, like yesterday.

hospice nurses have done an amazing job making him comfortable.

my brother continues to be a little shit. He's coming to visit dad now and I'm stealing myself up for a speech that is equal parts harsh but empathetic.

word has reached me that my mom, who turned 80 last month and also is leaving her current home to move 300 miles east in a couple weeks, has a boyfriend!?!?

her current place is not appreciative of their snogging, presumably due to liability issues. remains to be seen if they ask me to talk her down, which would be hilariously awkward

she has yet to mention any of this to me; looking forward to seeing if she says anything about it when i next call

That's a tough one mookie and also sounds like a rejected Seinfeld plot.

FUCK FUCK FUCK SHIT FUCK

Mom, why are you so set on that Forest Glen condo development? (It's a gated community right by a Metrorail station. There's a shopping center four blocks away, but the walk involves an underpass under the Capitol Beltway. And it's accessible to downtown Silver Spring, but I can get there from the neighborhoods I want. Also, a sunken living room seems like a really bad idea.)

dad's roommate is pretty late stage Alzheimer's but he has a booming voice and has episodes a lot, which is to be expected. he's also blind. so obviously I can't be mad at the guy.

but the situation is just frustrating. when my dad may be entering his last stages here, not being able to visit without hearing his roommate screaming "TAKE EM BACK THE OTHER WAY" for a half an hour is extremely upsetting. I was also trying to work and I couldn't focus and hearing the same phrase shouted over and over for a half hour (with his poor daughter trying to help him) was too much for me and I had to leave the room to work and try to go back later.

Private rooms are pretty much an impossibility here unless someone dies, which I don't wish on anybody. only a 55 patient capacity.

mom keeps talking about wanting to ask about moving him to another room but I don't want dad elevated above all of the other patients in terms of importance. if his roommate is moved, he'll likely get worse care. besides...I don't think it's going to matter pretty soon. dad can't swallow at all now. and we're not doing a feeding tube.

most days I can tune the roommate out and it's not a big deal. but today I can't.

xpost j.lu I'm sorry to hear about that development. have you had any success trying to convince her since Sunday?

I haven't tried yet. I'll probably try to talk to her this weekend.

hoping for the best. I know the entire enterprise has got to be stressful as hell for you :(

sending you love, Neando

Thank you.

We think he's moved to the last stage. He's no longer eating or drinking and breathing heavy.

We called the hospice nurse who concurred and was really sweet

In a rare example of someone who is looking out for us, dad's roommate unfortunately had the worst sustained outburst lasting almost 90 minutes of screaming and yelling while my mother and I were crying on dad's shoulders.

I msged my friend "I can't say goodbye to him this way". Mom looked ready to fall apart.

The hospice nurse got dad qualified to his own IPU room where we can spend his last hours as a family in a private room, in peace, without any of the commotion or stress of this nursing facility.

So he's moving there now. Finally can actually spend some final moments with dad without listening to screaming and the attitudes of nasty nurses.

It's how we wanted it.

Hospice nurses are superheroes. Glad your dad’s was so helpful right at the moment it was needed.

Thinking of you.

I hope you find some peace and closure Neando, and when you’re ready, take a minute to reflect on the time and care you put into helping your dad through this stage, and your mom in coping with it. All that stress and upheaval, a selfless gift and a sustained act of love.

sending you and your family a lot of love, Neando. may yr dad’s transition be guided by love and light.

Hoping you and your Mom get some peaceful time with Dad.

Thank you so much.

You are all very sweet.

I've frequently had dreams of dad in the last year where he's talking again.

Last few weeks the very limited speech he was capable of has gone and he's stopped squeezing our hands.

I just kept thinking how much I'd love to hear his voice again. To have one last conversation.

But then I realized his voice already reverberates through me whether I hear it or not. I tell his jokes. I learned so many life skills from him while stubbornly pretending I wasn't listening. He instilled in all of us a closeness that has never wavered.

Dad worked crazy hours growing up but he refused to be the absent father. Yes, sometimes it meant missing a ballgame or two, but he went out of his way to rework his schedule so that he could be at most of them. And he always wanted to hear about it if he couldn't be there.

He wasn't perfect. He could be a tough son of a bitch as a kid. He had a temper. I can't deny those things. He wasn't abusive. But he was a hard ass and sometimes we resented him for it.

But he didn't want to be that way and he saw how his anger issues impacted us and he transformed significantly. He mellowed out significantly because he loved us and he worked to change.

There was one night in college where he outright saved me. He doesn't know it. But I'll tell him when I have private time with him tonight.

When I was 19, in college, I was severely depressed and suicidal in my second semester of college. I finally reached the point where I was ready to attempt it. I made a plan to take my entire bottle of SSRIs when I got back to my dorm.

Dad was driving me six hours home from Orlando to Tallahassee. The entire ride all I could think was "six more hours then it's all over. Five more hours. Four." I kept fantasizing about dad leaving and me being alone with my pills and nobody being able to stop me. It was my singular focus. I was almost excited by it.

I stared out the window the entire drive. Deathly silent. He picked up on it and tried to engage me in conversation and I was very checked out.

As we got deeper into the drive, there was a hint of desperation in his voice. "Rob, are you ok?"

Normally I'd deny something was wrong aggressively or reassure him but I had no interest in doing that. I just faintly responded "I'm ok", with as much energy as I could muster to try and fool him.

He was not fooled. He would ask again a few more times. Now I was starting to get mad. "Fuck", I thought, "he's going to ruin this for me". I was worried that I wouldn't be able to get rid of him.

I tried harder and harder to fool him into thinking I was ok. But he knew I wasn't.

Maybe if it had been two years ago, he'd have yelled WHAT IS THE MATTER WITH YOU out of frustration. But instead I heard fear in his voice.

I realized he'd figured out what was going on. He knew this wasn't me being sad, tired, or down. He knew my mind had gone to another level beyond that and he was scared.

We were about an hour away and I wasn't budging. Fuck, you can't let him suss this out, he'll ruin it! You have to get him to leave when he drops you off!

Dad's pleas were getting a bit more desperate. "Rob, I can tell you're not ok. Can you talk to me?", with his voice breaking. Suddenly he was cutting through to me a little.

At this point I didn't have the energy to put on the acting performance to convince him I was ok. I just told myself I'd say whatever I had to when he dropped me off to get him to leave and then I'd be able to do it.

Finally, we got to my dorm and I thought I'd succeeded. But we got to the dorm and he threw a hail Mary.

"Rob - I don't know what's going on right now. I know you're not ok. I'm scared. I love you. I'm afraid to leave you right now. I can't drive home unless I know you're ok. You don't have to talk to me about what's going on right now but can you tell me honestly if you're ok?"

He was outright weeping by now. And it cut through hard.

This time, my response was genuine, where I forced a response (while going to pieces internally) and I smiled - "I'll be ok, dad".

He responded softly to me "can you promise to tell me if that changes - at any point?"

I reassured him I would and that he didn't need to worry. We hugged, with him still crying heavily. He said "ok", and departed.

Once I shut the door I had an emotional breakdown where I was crying uncontrollably for about five minutes. He'd won.

I had no friends, self-esteem, and I was abandoning my schoolwork. I hated myself.

But dad's actions that night made me think - if my father loves me this much... maybe I could learn to love myself. I decided not to do anything that night. I was still very depressed that semester and almost flunked out of school...but I never had those thoughts again.

That's the kind of dad he is. Love seeps out of his pores.

I'm going to send a hug to you. It should be there shortly.

That’s so powerful. No wonder you love him like you do.

<3 <3

A deep well of feeling you’ve shared. All the love to you both.

I don't suppose you'll check in here except for a brief touch, N, but we're thinking about you and your family.

My thoughts are with you all too.

Yom Kippur mourner’s service took on a new more serious meaning for me yesterday just about 2 months after my Mom’s death and 3 years after my Dad’s. Also had just learned my sister in law’s Mom died .

I more or less lurk in this thread to get a sense of what will be coming my way before too long, but I always read your posts Neanderthal and I'm often struck by what a caring, thoughtful son you are. Your mom and dad are very lucky. I can't imagine how hard everything has been but you have a lot to be proud of.

Please make sure you take care of yourself while all of this is happening.

Goodness gracious Neanz what a story. Huge sympathy for what you're going through. It's been a long tough road. Thinking of you.

And it's true everybody says here, what a perceptive and sensitive person you are. Sounds like it runs in the family.

Thank you so much everyone.

Weirdly it's been an emotional but serene few days. This hospice facility is gorgeous. The nurses are the sweetest.

Everyone, me, my mother, brother, his fiancee have spent almost the entirety of the last two days with him.

I'm what you call an avoidance coper these days. After the extreme pain of the last three years, I started refusing to acknowledge my pain, pretend I was fine when things happened. It went about as well as you'd expect.

I felt that creeping in again and my inner voice said "no. Not now. Accept them". And I have. They're all contradictory, they come in waves, but I've had the mental clarity in this space to do it.

I've gone from wailing despair ("I'm not ready!"), to laughter and tender moments. We played a video of dad singing karaoke from 2015.

Then his blood pressure dropped to 59/20 and his respirations about 50/minute. So acceptance is very much here.

Nurse estimates 12-24 hours. I'm not really ready. But nobody is. I am so very thankful for this hospice facility experience as it's allowed us to have tender final moments with dad.

I told him "you have nobody to answer to. When you're ready - just go. We'll be with you. We love you."

I also love all of you. Thank you for all of your encouragement the last three years.

*"accept them" meaning my feelings

Much love to you and your family, brother. You are all lucky to have one another.

<3

feeling this. my wife's dad died in our house on hospice, we were there in the room. it's a special moment as weird as that sounds. rock on dude.

Yes, I had a very similar experience with my 103-year-old grandmother. I was so glad to be there.

Thank you for sharing this experience with us.

Hugs, Neanderthal.