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Hi


It's day one after a nightmare hospitalization worthy of a lawsuit. Baseline lucidity and some ambulation are back, only a few dementia moments.


He is annoying the absolute sh*t out of me. I'm young (32---someone in this forum on my last post pointed out that they don't believe that to be a young age, which is a really jaded view so please no comments---women artists without children aren't primed for this lol) so please don't take that to be anything but harmless cursing, I don't need a Christian scolding, I need help to either get his *ss to sit still, or I need to find out how to chill/reoriented.


I have a mild mood disorder which I am fully medicated for, so this is just a pretty normal level of annoyance plus a lack of sleep. The garbage nurses at the hospital (I assure you this wasn't COVID burnout, these were disgruntled miserable charge nurses, this hospital is known for hiring cranky people who should have retired years ago---I didn't get to pick because of the ambulance diversions from COVID at the good hospitals) let me unwittingly be exposed to MRSA, and I just had my own minor vascular surgery on Monday--- a complete week from hell.


Isn't it also a problem for his two hernias to not stay the !@#$ still? I can't believe it's a nightmare day one. We have some home aids from Medicare coming this week, as well as RNs and I'm respite shopping. This is all happening insanely fast----I wish they just gave him the goddamned surgery in the hospital instead of making us wait for outpatient---and if he doesn't knock it off now, we're just going to wind up in the same situation of unmanageable pain.


I have no family to help, they're either incarcerated or mentally unsound with substance use disorder. What do I look for in an overnight respite when he has all these issues? We're going to burn through his money so quickly if this lasts a year.


HALP

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My heart breaks for you and for your Pops.

I am glad you had the nurse assessment and at least that is started - the In home aides that come with home health are usually only 2/3 times a week to help bathe - get dressed and can help with a few personal hygiene things - but from my experience that is all they will be able to help with (usually under an hour visit). You can also ask for a social worker (through the home health agency) request one be sent out to review Pops needs with you and they can help explore options and any benefits he may qualify for even additional local resources. That may even help you if you explore a second opinion with elder law (if you don’t already have this info).

Im so sorry you are alone in this - and even if most haven’t been through what you have gone through (which is a lot) please know in the world “every family” has dysfunction - and you are never alone.

Hospital delirium is Real and it is maddening - I could hear in ur first message and it was how I felt like when my mom got toxic encephalopathy after antibiotics - 10x delirium - I sat in her hospital room for 3 weeks in that hyper state (it is horrible watching someone in that state of mind)- even UTI delirium is off the wall and can be scary. Did they not give him anything for the delirium? I do know so drs say they have to “go through it” but many will give them something to attempt to bring it down a little at least so they can rest. You can reach back out to the nurse you had today (if he doesn’t wear himself out and stays at a high) and ask them to either come back out of contact his doctor for orders for something to help him.
If the delirium behavior doesn’t change (not sure how long he has been home maybe just 24/48 hours) then I would also make sure he didn’t start any new medication and is having a reaction to that as my mom did when she ended up with encephalopathy.

I also understand you not wanting to place him. I think you will have to see what the next few days bring in order to assess wether he will now need 24/7 care (hopefully the delirium clears and you can get a better look at his overall needs and decide if he can afford in home aides to watch over him at least for some time - if not you may have to look at placing him for continued 24/7 care.

Caregiving is the hardest thing I have ever done - it is all time consuming and you and Pops will need additional means of support and help. Just sit with it as best as you can for the next few days - try to get the social worker in - keep and eye on the delirium - reach out to the home health nurse if you are unsure about anything and digest what you have been through.

As I said in the hospital with moms delirium they really said “they have to go through it” finally I begged them to give her something small at night as it’s so distressing and she was exhausted - so they were basically saying let her wear herself out (but I started pushing harder when she wasn’t coming out of it) and it was getting worse that’s when I got her neuro to start looking further and they agreed she was having toxic encephalopathy from the antibiotics. So yes they can be left to wear themselves out per the hospital but also more could be causing the high restlessness so if it doesn’t start to get better - then make sure you call his dr/nurse etc.

keep us posted and wishing you the best 🦋
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Haha, sorry that was a rant. Happy to clarify:

He couldn't get out of bed and was in severe pain, so he asked me to get him help. We got him an ambulance---he was diagnosed with a small hiatal hernia and a considerable present inguinal hernia, affected by his appendix.

He is not formally diagnosed with dementia---he is great at masking with everyone except me the vast majority of the time. The stress of the hospital, as well as the pain the doctors did nothing to relieve (they said to take Tylenol lol), gave him a pretty funky case of hospital delirium.

He has always been a manic/anxious energy type personality, so the inability to sit still isn't totally new---he used to complete everything for the day after work and then get bombed and restart the cycle before he retired. He's extremely social by nature---so the main cues for these worsening dementia symptoms are low self-esteem in his communication, and some wild stories about spaceships and coffee machines in the walls that he can't get to. The pain is still just as bad as before we left the hospital--however, he has figured out how to maneuver out of bed already, and just rides the stair chair up and down for no reason, is doing slight pacing, and is taking a shower (or at least running the shower and using washcloths) every single time he steps in the bathroom, even to just urinate. His gait is solid and he has a shower chair so I'm not super concerned beyond him getting some skin irritation and a high water bill.

He has lived alone since his wife died, 3 days before we went into COVID lockdown. My mother used to live here with him, but she decided to go play elective homelessness so she could use the PUA she managed to get despite not having worked in 20 years. He has been functionally alone and very competent, clean, organized since January when she left, besides his great community of neighbors.

His decline began after contracting COVID in March---since then, I have inched more and more involved, first starting with two medication reminder calls per day, then check-ins, then shopping and check-ins, and finally visits every other day on top of all else.

An RN came to assess today, but there was too much to catch up on that the hospital got wrong (they didn't list his lymphoma remission), so we didn't get too much behavioral conversation, just the physical health stuff. Home Aids should start Monday, and I should have a ton of professional support at least through his outpatient surgery.

I know he's not actually going to stay still---the question is, can I get him to wear himself out enough to get some peace and sleep through the night. The stair chair game is extremely irritating. I am an extremely compassionate person, but if I don't get time alone for a bit a day, I am not at my best. I'm going to be here for at least two weeks straight to get a private caregiver oriented for some potential overnights (we aren't the most trusting family).

I'm selfishly annoyed also because my unemployment is winding up and I'm looking to go back to work, and the chaos of substance abuse, mental abuse, criminality in my childhood environment has gifted me CPTSD. I just got my bachelor's a little later than traditional age, and was supposed to be rejuvenating my relationship, getting my professional practices together, and start making some decent money again.

I am obviously bitter that his children are incompetent, selfish f***-ups, because this is skipping a generation. Fat chance I'll ever take care of any of them. My deeply abusive uncle was just diagnosed with colon cancer, and honestly, I was elated for karma to bite him back.

This whole situation because of the family dynamics is overwhelming, and I just want the best for my pop---he's more like my dad than my biological one.
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My suggestion, place him. Find a nice Long term care facility. Get his doctor to say he needs 24/7 care. If gramps has money, other than SS, pay privately till the money runs out and then apply for Medicaid. His SS will go towards offsetting his care cost. Then you can go on with your life. In a NH all their needs are met. They provide his toiletries and Depends. Wash his clothes. All you need to do is visit. He will have a PNA (personal needs acct) where you can draw money out of it for his clothing needs. (Its not much, in my state it $50. Your grandfather was the responsibility of his children. Grandchildren should not have that burden.
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PerfumeGarden Aug 2021
I've been researching this for when the time comes--- it just breaks my heart because he's actually very pleasant and loves his home. I'm probably in denial and want to attribute everything to hospital delirium. I am his executrix and POA, and want to make sure I'm thinking everything out---we have an okay elder law lawyer, but I may get a second opinion. The other issue I am avoiding, is once his kids find out that he even had this hospitalization, the vultures will be here to sense how much he has declined, and the mental abuse will begin, and potential stalking. One of my uncles (the one with colon cancer) has figured out that I am in charge/"inheriting", and has been stalking and threatening me since two summers ago. He's a monster---he had my stepdad attacked in the skull with a crowbar leading to a lifelong seizure disorder. I don't think he's above getting my kneecap taken out when the dung hits the fan. This isn't your typical garbage family member, this dude has done time and is an actual sociopath. I don't even know what he's after; Pop doesn't have much left after 20 years of retirement, and Medicaid will come after the house to recoup immediately upon his passing.

Anyway, I know it shouldn't fall on me, but my Pop genuinely couldn't trust anyone else, and he has always been my favorite family member. The attached baggage faux-mobster activity is insidious and stressful, which makes all of these decisions more difficult. When they find out he's eventually placed when he declines more, they will show up and ransack the house and claim it like a war bunker. It's actually all completely insane. Welcome to Philadelphia lol.
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I did not see any other post so maybe I don’t have the whole story.

I thinking you took him to the hospital and the diagnosis was 2 hernias and they discharge him to follow up with outpatient and sending in a home health nurse?

Does your grandfather have a dementia diagnosis already - does he take any medications now dementia or other things? Did this restlessness come on recently or is he always this way due to dementia or do you believe it’s from hernia pain? Does he live with you?

Sorry for so many questions - I just don’t know how to maybe guide you without understanding a little better and I can tell you need help.

Im not sure when your home health nurse is suppose to come meet him and do an assessment (but you can call them and explain his restlessness as a high concern and request they come out this weekend? They may or may not but I would try as I believe most home health have a weekend nurse (ours does).

If you could just give a little more info maybe we can all help you find the appropriate care for him.
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