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Thankfully enough - and put this in the "places you wouldn't believe you'd find yourself in 10 years ago" column - my ex-husband, his girlfriend and his family have stepped up to the plate in caring for Leroy Jethro, taking on some of the big kiddos stuff I'd usually handle (appointments I scheduled as convenient for my schedule only type stuff) and checking in with us to see what we need.

They have cared for Leroy Jethro for us, in their own homes. On days when the big kiddos were supposed to be there and I was at work, they just toted him right along.


This is so heartwarming to hear. I'm happy for you (for this, I mean. not for needing this).

MOI
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Holy crap.
I'm so sorry.

When I first started reading, I thought maybe it was a pharmacological issue with a med he's taking (similar happened with my grandmother), plus that he's older. Apparently, not the case. Crap, crap, crap.

That is really sad and disturbing and, like you said, horrific.

What a nightmare. Again, I'm so sorry. Big hugs.

Chili
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In the course of the last 8 weeks he's gone from relatively healthy and holding down a part time job, to a shuffling, confused old man - with the majority of the decline happening in the last two weeks.

This may sound like a dumb question, but have they checked him for a UTI? Those are common in the elderly, and one of the symptoms is rapid descent into dementia. This happened frequently to FIL, and we were always amazed that they would run all sorts of tests, but not one to look for a UTI until we asked. And then he'd have one and they'd treat it.

It might be worth asking, even though it sounds silly.

Praying for a good outcome.
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I'm so sorry to hear that. :( I hope he can be helped.
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This may sound like a dumb question, but have they checked him for a UTI?

This. I saw that happen with both of my parents. It causes a really dramatic shift in behavior.

It's a long shot given the timespan, but worth ruling out.
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So sorry, imp. 64 is too young!

-Agg97
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Good lord, how awful. From my perspective, 64 is damn young.
FWIW, I wonder about a possible UTI too. Infections can really mess with cognition in older people.
Please keep us posted.

Hugs

Isewquilts
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I'm so sorry to hear this.

This is much too fast for ALZ. There are all sorts of non-dementia conditions that have these symptoms, such as fluid on the brain, kidney problems, vitamin deficiencies, etc. - although it sounds like he's had enough tests to rule most of that out.

I hope they find the cause.
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The shuffling makes me want to tell you to learn about Normal Pressure Hydrocephalus, just in case. That is one of the few causes of dementia that actually has a treatment, and they misdiagnosed my father. He suffered many years because of the misdiagnosis, when he might have been treated if they caught the cause early.
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In the course of the last 8 weeks he's gone from relatively healthy and holding down a part time job, to a shuffling, confused old man

Doesn't sound like any dementia I'm familiar with except perhaps caused by stroke. But I'm pretty sure brain imaging can rule that out/in.

64 is young for dementia, but my husband's primary progressive aphasia (a rare form of dementia) started in his late 50s.

I'm sorry, imp.
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Small update: some testing has revealed this could be a case of Autoimmune Dementia.

He's on a large dose of steroids for two weeks (will be re-evaluated for efficacy at that time), and has been released from the hospital.

We are approximately 40 hours into release and....I'm just not sure how well he can be cared for at home.

The steroids are making him feel invincible, and he was already stubborn about using the walker, avoiding stairs and taking his prescribed medicines at mom's direction (instead of at his own direction).

Mom's choice to take him home first instead of releasing him into care, so we are supporting her in that attempt. He does have care lined up in case this doesn't work out, and Home Health will be there this week to support her as well.

Fingers crossed.

impolite
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{{impolite}}

I'm so sorry. Your father is living out my worst fear; and I'm 62, almost 63, compared to his 64.

I hope my daughter never has to go through what you're going through right now.

Patzer
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I am sorry you and your family are going through this. I hope the doctors find a solution, and that all the medical bills are not devastating for him.

Cosmos
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Our prayers and concern go out to your family. While hers was not rapid onset as you describe, we watched my Mother's health decline as a result of dementia. She lived with me and my family for some time before we could no longer provide the 24 hour care necessary to keep her safe. I understand your emotions and challenges, and will continue pray for the best outcome possible.
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oh <words>

peace & what do you need?
t
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Ditto what tconi says. What do you need?

Also, have there been any water leaks in your dad's home recently? There is a particularly nasty toxic mold linked to sudden onset dementia. If he felt better when taken out of the environment, it would be worth looking into.

How is your mom doing? Any health issues? Respiratory or otherwise?

(((((imp & fam)))))

MOI
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I'm sorry imp. We're here for you and please let us know what you need.

-Jacalyn
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It is truly awful. I'm so sorry.

We have been dealing with something similar with MrHunzi's father (his mom died about 7 yrs ago). One phone call he was totally fine and planning a cross-country trip to visit, 2 weeks later, MrHunzi's sister is phoning to say she's taking him in for care because he has dementia. Since we are out in the hinterlands, this was shocking and confusing.

I asked all the "is this a UTI" and "could this be a drug interaction" questions, and his sister (the nurse) assured us it was not.

HunziFIL went from totally lucid and living independently to incapable of being unsupervised in less than a month. ;-( His sister cared for him at home for a few months, then put him into care. After 2 years, he has just been enrolled into hospice, and I suspect it won't be long before we have to take a trip to AZ.

It's sad, and I feel for you and will be praying for you and your family.

Always,
Hunzi
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Oh ((((((((imp)))))))

I don't have anything useful to say so I'll just say I'm thinking of you and yours!!

whoopica
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Another small update: the neurologist does not believe the steriods are working, so starting today he'll immediately taper off of those; should be done with them entirely in a week. As he already has (managed) high blood pressure, without marked improvement on such a high dose the risks of taking them are too great for no reward.

Next step is for the doctor to attempt to get the insurance to approve immunotherapy infusions. I suspect this will be a bit of a fight, but they have a documented history of him needing infusions earlier in life, so I believe we'll ultimately be successful.

Right now we (Little Sis and I) are trying to move my mother from thinking day-by-day and into a longer term model. A nurse is coming tomorrow to the house; Little Sis will be there and inquire about help insurance could bring in, or that we could engage ourselves. Plus we need to get a set schedule of days for when we can be there, what days are best for appointments* so one of us can be there, etc.

Sally forth.

impolite
* both have expressed a desire for us to be there at appointments, when possible. So far the appointments have just been super willy nilly, I'm trying to wrangle that into a better setup.
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what days are best for appointments* so one of us can be there, etc.


When/if you are able to attend appointments, please consider recording the Q&A part of the appointment for later review. (by which ever of you didn't go to THAT appointment)


peace & remembering questions
t


ps. if you haven't started a spreadsheet already, well- we've met...
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Since the last update, he was hospitalized again after another episode* and the infusions were started, insurance be damned (the hospital ordered the infusions, and we'll just deal with the cost incurred).

They do not seem to be working, though we are told we need to wait a few days after the last one to be sure. We are actually two days behind schedule on the 5 doses, because we are also having to manage the reactions he is having to them.

I spent a lot (A LOT) of time at their house during the past week, cleaning the house and getting the finances in as much order as I could. For right now, Mom would like for me and Little Sis to handle the finances/insurance paperwork until she can get her feet under her a bit.

Things right now don't look too rosy.

impolite

* Visual and auditory hallucinations, physical pain, un-redirectable behavior we were unable to cope with.
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For right now, Mom would like for me and Little Sis to handle the finances/insurance paperwork until she can get her feet under her a bit.

No idea of his pension, etc but SS(I know it wouldn't be full retirement age) and SS disability are out there and can get tied to Medicare. My experience with SS for this was that they were pretty helpful when that almost happened.
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Sally forth.

I'm sorry for everything you're going through, impolite. My father went on a similar journey a few months ago, so your posts are hard to read because they are still fresh in my mind.

Be sure to take care of yourself, even if it's just a walk in the hospital parking lot. You're doing great, taking care of Mom and little sis.

Thoughts and prayers headed your way.

-Agg97
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Thinking of you, I don't know what else to say.

Best,
Cosmos
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Two things:

1. I'm sorry, Imp.

2. If you're worried about how something is going to be billed, ask the case manager. That's usually the person who will be working with you on discharge planning. The case manager is the person who codes it for Medicare/insurance so it's good to stay in their loop.
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I'm so sorry, impolite. It's dreadful to watch and feel helpless. Maybe the cleaning and organizing will let you and Little Sis focus on something else for a few minutes and you can get a mini-break. Small comfort, I know...hugs and thoughts and I wish you weren't going through this.

cm,
sending some more hugs
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No idea of his pension, etc but SS(I know it wouldn't be full retirement age) and SS disability are out there and can get tied to Medicare. My experience with SS for this was that they were pretty helpful when that almost happened.

Thanks for the tip; I asked Mom about it and found out they'd gone for early SS on him already and it should start January 1; so that's next on my plate to dig up information on. I think he had to do SS because of some pension rules, but again that's third hand from Mom so I'll have to call the benefits office myself.

We are in a bit of a pickle; we don't have POA on him yet because he wasn't ever "good enough" to sign it over between hospital stays - if his bank had actually let him sign it over any of the days he was out of the hospital, it would have made me seriously question their ethics he was that compromised.

So on my current list:

1) SS/Medicare info (thanks!)

2) Power of Attorney process

3) Possible placement somewhere, either temporary or permanent. If it turns out to be temporary, then I have a) a list of safety-minded house modifications we'll have to perform before he can come home and b) a rotation of in-home help to set up.

4) Insurance Wrangling

#3 is honestly the most stressful, because he's still in the hospital and we are on a day-by-day, plus Mom is...not the best at retaining information or asking questions. Little Sis and I are both "essential personnel" last week and this week at work, so we are trying to help as much as we can via text and phone.

impolite
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P.S. Thank you all for "listening" here, it's helped.

And in keeping with board history - yes, there are spreadsheets. It was very nearly the first thing I did.

impolite

....because what else would I use?
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3) Possible placement somewhere, either temporary or permanent. If it turns out to be temporary, then I have a) a list of safety-minded house modifications we'll have to perform before he can come home and b) a rotation of in-home help to set up.

4) Insurance Wrangling


Check the insurance carefully FIRST. In some cases they will cover X days in skilled nursing/rehab center if he goes there after X(often 3) days in the hospital. That can give you time & guidance on what he needs and how to do it.

Helpful people I forgot about - hospital social worker and counselor at chemo center.
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We are in a bit of a pickle; we don't have POA on him yet because he wasn't ever "good enough" to sign it over between hospital stays - if his bank had actually let him sign it over any of the days he was out of the hospital, it would have made me seriously question their ethics he was that compromised.
.
.
.
2) Power of Attorney process


Since he's not competent, you are probably beyond getting a Power of Attorney, and will need to go for a guardianship or conservatorship, depending on your state's laws. I would suggest checking with an eldercare attorney.

AJ
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Mom is...not the best at retaining information ...

Can she record discussions during appointments?
(even on an old phone)


peace & recall
t
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Check the insurance carefully FIRST. In some cases they will cover X days in skilled nursing/rehab center if he goes there after X(often 3) days in the hospital. That can give you time & guidance on what he needs and how to do it.

There's also rules about how often you go to skilled nursing/rehab. (ie, if you're discharged from a skilled facility you can't be admitted to one for x number of days)

Helpful people I forgot about - hospital social worker and counselor at chemo center.

Get to know the case manager and the social worker - they know the system better than anyone. It's what they do every day.
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I don't have anything to add, but I'm thinking and praying for you and your family!

Always ;-)
Hunzi
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Thinking of imp and family today.

That is all.

<3
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Thank you, it's appreciated. :)

Small update: they believe they've narrowed it down to hashimoto's encephalopathy with no appreciable thyroid involvement.

This is rare, he's not in the "most likely" age group, and it's rarer still in men.

Unfortunately this really doesn't help a whole lot, since we've already run through two treatment protocols (steroids and the IVIG), but does explain why the symptoms that were most terrifying - the manic-like episodes that required hospitalization 3 times - have not recurred since we the IVIG was administered.

On the downside of things, his kidneys are now being watched. They are in the low range of normal after dropping from perfectly fine, as a side effect of the infusions is kidney function diminishing (usually temporarily, but possibly long term).

Still in the hospital. Did you know there are mobile notaries?! What a neat thing! We now have signed Durable health and financial POAs because a very lovely young lady offers to travel for notarizations.

Lots of paperwork to come. My biggest hurdle right now is not being able to be there 24/7, and being supremely frustrated with how few questions my mom asks when a doctor is in the room. We get these little tidbits of information, so Little Sis and I strategize and when one of us is there, we usually have a nurse check all the notes from a list of questions WE have, then have them put them in the notes to be answered next time if there is no answer there. Plus we send each other pictures of orders that hit for blood work, the boards that shows status, etc.

So we are trying to manage our expectations. She's not handling like we would, but we cannot be there full time, she's the person he's named (even before the POA, on all paperwork) as who is in charge of medical decisions, and there's no medical neglect. This is just personality clash. But GAH.

{And no, she won't record tconi, we asked. DOUBLE GAH}

impolite
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I'm glad things are a little more stable. Stable is GOOD not least because it gives you time to solve problems that will make the next unstable period less bad. If that makes sense.

I hope, too, that you are taking care of yourself in all this. It's a similar thought process -- the more you take care of yourself in the stable times, the more able you are to deal with the unstable stuff.

ThyPeace, in a stable time after some professional instability, so building the stamina now.
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I hope, too, that you are taking care of yourself in all this. It's a similar thought process -- the more you take care of yourself in the stable times, the more able you are to deal with the unstable stuff.


I've been trying. I am taking care of the paperwork but that's not really visible, and Little Sis and Mom have made a few comments about me being at the hospital more, but I'm just at my limit. Like fall in bed at 8pm some nights limit. I'm working late the days before and after I'm off work to take care of things at the hospital, and I still have three kids and a house and a commute and some time-sensitive daily to-dos on either end of that, plus I'm spending brain power while at work doing some of the items (like, I'll call a doctor's office about billing while running something else in the background, that kind of thing). If I get off work late, all I want to do is pick up the youngest before I incur a late fee, get home, make dinner, fall into bed.

It's just grinding. But T has been a huge help and relief (despite his own career causing early mornings and late nights), and we've managed to slog through so far.

I've had a few hurts along the way, most notably Cousin and his wife just not stepping up to the plate when I asked for some emergency child care (because all of our local child care was either closed for the holidays or AT THE HOSPITAL WITH THE GUY WE THOUGHT MIGHT BE ACTIVELY DYING), but so far I've managed to just let that simmer on the back burner a bit. Like, noted. NOTED.

Sorry, rambling.

impolite
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It is not a surprise that hospitals have notaries just drifting around for such situations.

and GAH, mom.

I know NOTHING about the requirements for it - and I understand that WOrk Stuff just doesn't handle itself, but can you or Little Sis take a little FMLA time for this?

Cousin and his wife just not stepping up to the plate ...
Like, noted. NOTED.


I hear you with Stuff like this.
Do what you will with forgiveness, but it is noted on the spreadsheet and will Not Be Forgotten.

peace & being exhausted
t
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I know NOTHING about the requirements for it - and I understand that WOrk Stuff just doesn't handle itself, but can you or Little Sis take a little FMLA time for this?

Little Sis's work is very understanding, but she started a new job last July, for a company too small for FMLA leave. They have been very accommodating, but she just hasn't accrued much paid time off to take. She's been able to work early/late to make up her hours so far, though.

My job has been supremely understanding, so it's definitely more of the "doesn't handle itself" variety for me. At first we weren't sure what we were looking at, and I even went to HR and got the FMLA paperwork/process started because I thought we might be staring down the barrel of "time off then plan a funeral"; once it became apparent we were looking at a much longer term decline, I started conserving time out of the office a bit more.

Thankfully enough - and put this in the "places you wouldn't believe you'd find yourself in 10 years ago" column - my ex-husband, his girlfriend and his family have stepped up to the plate in caring for Leroy Jethro, taking on some of the big kiddos stuff I'd usually handle (appointments I scheduled as convenient for my schedule only type stuff) and checking in with us to see what we need.

They have cared for Leroy Jethro for us, in their own homes. On days when the big kiddos were supposed to be there and I was at work, they just toted him right along.

Granted, over the years they have spent a lot of time with him* and he even calls the big kids' grandma "grandma" because that's what they call her, but...what a boon. And I couldn't have seen today from a decade ago.

The hardest days for us so far have been the unexpected - snow days, sickness, T's grandma *also* getting sick and now being in the hospital, taking MIL out of the equation as a babysitter. But we just slog through each one as they come up and do our best.

impolite

*There are an awful lot of hours to pass at baseball tournaments.
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hankfully enough - and put this in the "places you wouldn't believe you'd find yourself in 10 years ago" column - my ex-husband, his girlfriend and his family have stepped up to the plate

well, that's a delightful surprise that DN has matured.


peace & successful co-parenting
t
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I don't have anything to add, but I'm thinking and praying for you and your family!

Always ;-)
Hunzi


Hunzi,

I'm not one to pray, but holding you and yours in my thoughts.

peace & unthinkable
t
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Me too sweet Hunzi. You are a gem and my heart hurts for you.

impolite
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Thankfully enough - and put this in the "places you wouldn't believe you'd find yourself in 10 years ago" column - my ex-husband, his girlfriend and his family have stepped up to the plate in caring for Leroy Jethro, taking on some of the big kiddos stuff I'd usually handle (appointments I scheduled as convenient for my schedule only type stuff) and checking in with us to see what we need.

They have cared for Leroy Jethro for us, in their own homes. On days when the big kiddos were supposed to be there and I was at work, they just toted him right along.


This is so heartwarming to hear. I'm happy for you (for this, I mean. not for needing this).

MOI
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