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Impolite, how is your Dad? How is your mom coping?

Hugs to you,

Pam
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Dad is now in a memory care unit, we got him settled in last weekend.

He had a brief field trip for a doctor's visit and lunch today* and reported that he felt overwhelmed and glad to be going back to the nursing home after.

Mom is....not handling things well right now. There have been a lot of decisions and there is a LOT of paperwork and we've engaged a Lawyer to help us preserve assets during the application for medicaid for my father so there's even MORE paperwork and it's just too much.

Little Sis and I are splitting duties basically - I can take more time off work, so try to make most of the appointments during the day, and Little Sis does what she can at night (help Mom log into accounts and get the information needed for example).

She also worries about the wrong things at odd times....car tag renewals not due for a month, for example. So we spend a lot of time fielding questions about things that do not matter while attempting to get stuff done that DOES matter and is very time sensitive. I've suggested anxiety medicine but so far she's resistant. I might try to see if I can wrestle her into the doctor herself the next planned day off I have.

I've managed to get my taxes and Q's taxes filed; this weekend I plan to work on Little Sis's and my nephew's. My executive functioning is actually holding up well, I'm just at capacity...so some stuff is falling through the cracks, or taking way way longer than usual to complete.

impolite

*An appointment neither of us girls knew about, until it was over, despite us making it clear over and over that we can and will attend, at least via phone. GAH
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...we've engaged a Lawyer to help us preserve assets during the application for medicaid for my father...

I did that too, and the lawyer told Dad to:
- Buy a more expensive house, because real estate is excluded from Medicaid eligibility calculations, and
- Give the rest of his money to his grown children, who will of course set it aside and then later spend it on nothing but his care (HA! hahahaha).

We dis-engaged that lawyer.

...there's even MORE paperwork...

Medicaid has a 5-year look-back, and at first I was in a panic because I don't have 5 years' worth of records. However, when I visited Dad's bank, they said, "Oh, no problem," and within a week mailed me a stack of papers: 5 years' worth of statements and cancelled checks. I stopped there, for a number of reasons; bottom line, my situation is very different from yours.

Medicaid is state-specific, so you might be getting different advice.

Meanwhile, besides your lawyer, there should also be a social worker at your dad's memory care facility who can help.

Best wishes for some stability soon.
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I did that too, and the lawyer told Dad to:
- Buy a more expensive house, because real estate is excluded from Medicaid eligibility calculations, and
- Give the rest of his money to his grown children, who will of course set it aside and then later spend it on nothing but his care (HA! hahahaha).

We dis-engaged that lawyer.


Yeah, wow, no thankfully nothing that weird!

We are working through the division of assets process, and having her help us do that legally, while preserving as many assets as possible. Back-of-the-envelope calculations, we can preserve about 90K in assets immediately, then an ongoing savings from Medicaid partially paying his care.

Since we could be looking at a decade or more of care, we need that 90K to pay for our portion of his care, and we need Mom to retain as many assets as possible now for her own possible care later.

Meanwhile, besides your lawyer, there should also be a social worker at your dad's memory care facility who can help.

Yep, and on a really cool note* the new director of the memory care unit is a man Mom used to work with, before retirement, and someone she just LOVED working with. That was a pleasant surprise, and she visibly relaxed when we met with him.

impolite
* as cool as you can get here, I guess
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I know you are careful. Be sure to look at changes in everything, including tax liability and costs for your mother’s health insurance and SS eligibility. Kind of a 360 financial review because you don’t want to hit unintended consequences.
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Thank you, I definitely will look into those things as well.

I hadn’t thought of tax liability changing, for instance.

I appreciate the heads up, thank you.

impolite
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I know you are careful. Be sure to look at changes in everything, including tax liability and costs for your mother’s health insurance and SS eligibility. Kind of a 360 financial review because you don’t want to hit unintended consequences.

A follow-up on this: thanks for reminding me about the tax implications; I've been able to minimize them along the way.

I think I'll have quite the work to do for their 2019 taxes, but with the heads up you gave me I am at least aware of it, keeping good records, and making informed decisions.

As for the rest: one piece of this is really causing me some headaches - one company is nearly impossible to get in touch with (in fact, at one point we ended up driving to a local office and just basically not leaving until we at least had some paperwork filed and a few answers), they've dropped calls after my mother has transferred it to me as her spokesperson for that call, meaning we have to call back in and re-certify for me to keep talking to them, etc. but the end appears to be in sight.

The worst consequence at this point is we miss a March 31 date for Medicaid, and then owe March dollars to the nursing home (instead of March - Medicaid, which is what we paid in March via agreement between the lawyer and the home in anticipation of Medicaid being completed).

That's something I can live with, and I've prepped Little Sis and Mom for the same. This is just the best I can do while holding down a job and having to two-step communicate with each account.

Next steps (besides the above) are:

1a) Adding my mother to all accounts, either via POA or having my father call to add her when he's having a good day. The second is far easier and faster, but I'll resort to the first method if needed. So far I've kept the ship afloat by logging into accounts with his username/passwords, but I need her added to the accounts so that we can start making some changes to get her down to living within her income only. I've given her the number to call and the account number for each *in order of importance*, so that good days aren't wasted on something stupid like trash pickup, but instead the ginormous TV bill they pay every month (why?!).

1b) Once she's on the accounts, she will add either my sister or myself to each of them. Guess what I'm not wanting to do all over again in a few years?

2) Going through the medical bills she apparently hasn't been giving to me. GAH. I need to determine which have been paid appropriately, and how much we still owe on each, so that I can get them paid before we do the final asset count - I'd rather that money be (legitimately) spent before they count dollars left in the accounts.

3) Get the medical bills I don't think were paid appropriately to the Union for help on fighting the insurance for payment. Finally (finally like literally I've been saying to do this for months BUT I'M ALSO NOT TRYING TO RAISE MY BLOOD PRESSURE RIGHT NOW) my mother visited the Union hall and was told to bring the incorrect bills there, they have a person that does this kind of thing for members. DOUBLE GAH.

4) Their 2018 taxes. Supposedly all paperwork has come in, and is at their house.

5) Once this is all settled, she will need to redo her will. Her will needs to be re-written to go into a trust so that we don't mess up Dad's medicaid status, but can also still pay for his care if she goes first. {Note: the infusions that are kind of helping and are basically his only hope for some quality of life are only being approved one at a time. We would need to pay for them out of pocket if his insurance/Medicaid refuse.}

I feel like I'm finally making progress, I think because we are past the halfway point on paperwork.

Little Sis is able to field the next neurologist appointment, too - which I didn't realize was such a damn burden until she said she had the day off. Whew.

My executive functioning skills are still in the toilet - it's like my brain's inbox is just full, and stuff is falling out the sides and down behind the desk. I'm managing to keep the important things going, and apparently to most people* it looks like I'm cool as a cucumber, but sweet lawd am I struggling.

impolite

*T has noticed an immense difference, I think because I'm putting most effort into work and then my parents' stuff, with home stuff coming in third. He's rolling with the punches, but between his job and this mess, we are really not 100% running the household. Just kind of lurching from THING IN OUR FACE to NEXT THING IN OUR FACE and hoping for the best all around.
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The worst consequence at this point is we miss a March 31 date for Medicaid, and then owe March dollars to the nursing home (instead of March - Medicaid, which is what we paid in March via agreement between the lawyer and the home in anticipation of Medicaid being completed).

If you have applied by March 31, even if the decision isn't reached by then, the approval can be backdated to the date of application. At least that's the way it worked in TX. Check with the lawyer.

AJ
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Another random thought. When our Mom was in an assisted living facility prior to her passing a few years ago, I started monitoring her on-line Medicare account. We all of a sudden started seeing recurring charges from a physical therapist. Her doctor had not prescribed such services, nor had the facility consulted me and siblings about engaging these services. When I challenged the staff, asking who was this person, and what PT services they were providing, I received no answer. But concurrently, all of a sudden, the charges stopped completely.

Now, she was incurring no out of pocket expenses, but the whole thing was bordering on Medicare fraud to us. This may not be relevant in this case, but I'm just proving it FYI.
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(((hugs)))

He's rolling with the punches, but between his job and this mess, we are really not 100% running the household.

Not to put adult problems onto kids, but it's OK to ask your kids for a little extra help. They can cook dinner occasionally (even just grilled cheese sandwiches are helpful, or a few simple meals, or the occasional breakfast for dinner). If they do a few loads of laundry for you, that's one less thing for you to worry about. I bet your kids know your stress level is at 11 (on a scale of 1 to 10). If you can come up with a few things for them to do to help you, it will make your life easier and it will help them feel better because they'll be helping you and then your stress level can come down. (even if it's just to a 9.5 it'll still be an improvement)
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When our Mom was in an assisted living facility prior to her passing a few years ago

johnmoni - I do not think I knew this.

I know you were close and I am sincerely sorry for your loss.


peace & differences aside
t
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"it will help them feel better because they'll be helping you and then your stress level can come down."

I agree. Kids are amazingly resilient, often more so than adults. Helping out is a great way teach them empathy and the importance of family helping family.
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Thank you so much. Our Mom was a tough, independent woman from whom I learned a lot about many things. The transition from her needing little help from anyone, to being unable to perform the most elemental tasks was difficult to watch. But she lived a good life and left behind a legacy that makes our family proud.

I truly appreciate your caring words, and any differences that my have occurred in these forums wash away over time.
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A bit late to the party, but I'm going through something a bit similar.

My mom had a stroke December 25 2017 and has mild connotative impairment. She took care of EVERYTHING, so now I'm taking care of it. Mom and Dad live with us, but are moving to assisted living hopefully within the next 30 days.

Bank accounts - Here (Tennessee) it was recommended that we (brother and I) have ourselves added as signatories, not owners. You can sign for stuff, move money around, but there's no question about the medicaid implications.

Borgney
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"She took care of EVERYTHING, so now I'm taking care of it."

That was exactly our situation with our mom. I understand 100% what you are going through.
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A small update.

We've gotten my mother added to the accounts we needed changes on; I had to pull on the reins a bit after that because she had hit critical mass and just wasn't able to do anything more at the time. I just cannot do some of these things for her (and some of the things I could do, I'm not doing out of either principle or my own lack of time), so they will wait.

2018 taxes are done. I had to remind her to take them somewhere (I determined I didn't have the time, energy or inclination), but they got done and in time.

Medical bills still vex us; some she still inexplicably pays when they come in without me seeing them, including one that should have flagged as incorrect just because of the amount alone. I'm fighting for a refund on it, and make it clear that EVERY SINGLE ONE needs to come to me. I don't care if it's $15, it comes to me for verification that it was coded and paid appropriately.

They travel out of state to Mayo in May; she's taking one of her sisters with her for the trip. Unfortunately I had to make it clear in a pretty blunt manner that I was not going to be able to take a three to xx? day trip with her to help this time - I'm still very behind at work, and I'm also effing exhausted. So then she contacted my aunt, and a plan was hatched for her to go with them. I'm still handling the logistics of the trip (directions, hotel reservations, etc.), but a trusted adult will be with her to help, listen, and advise, so that's nice.

The most likely diagnosis is looking like Lewy Body Dementia which is not a great thing to hear, but maybe with a final diagnosis, whatever it turns out to be, my mom will reach some level of acceptance. Right now she feels tremendous guilt that we had to place him in care (despite social workers, doctors and her own daughters saying it was the only real option we had), and frequently takes him out of care on field trips that leave her exhausted, seem to bring out his worst symptoms, and also leave us trying to sort out WTF is going on that day via random text messages from her.

His symptoms *are* worsening, but they are the worst when out of the care facility. Anxiety, thousand yard stares, inability to interpret what he's seeing (ex. I had to find the pie that was literally right in front of him at Easter), and most distressing for him, bowel distress with little to no warning. Noise bothers him, and he feels pains where none exist (from what we can actually discern, he's an unreliable narrator at this point). He also still has huge impulse control issues - we had to talk him down off a chair when he thought something was hanging crooked (it wasn't, and a fall onto my mother would have broken her bones).

In the care facility, with dimmer lights and less noise, he's just prone to more thousand yard stares, and unreliable recounts of his day. He will frequently insist he didn't get fed or get his medicine, when one of us *literally witnessed it happening*. He loses items that we have to find (in his own room) for him, forgets that we brought him a treat and asks for more of X when it's right in front of him, and insists the other residents are so bad off, someone should really help them.

I'm tired. I'm at about my limit of ability to deal with it, so have started taking "breaks" from the long random nearly indecipherable text chains my mother sometimes starts mid day. I figure if it's an emergency, someone will call. And just ignore the phone.

impolite
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I am so, so sorry you are having to deal with this, impolite. I've just been through my own end-of-life journey with my mom. Very different than what you are going through... and all of these are incredibly and unrelentingly hard. My dad said, in the middle of stuff with my mom, "If this happens to me, just shoot me." Sigh. I said to him that we would do our best to let him decide his own course, when the time came, just like we were doing for mom.

In the end, we had two goals. Let her chart her own course as much as possible, and minimize her suffering. We weren't perfect on either of those, and I regret the slips. But we did okay. And for us, though it was a hellish 17 days, it was 17 days. Enough time for laughter, for tears, for touch, for conversation, for suffering, for an end to suffering.

ThyPeace, nothing easy about it.
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(((((Imp)))))

It’s so hard. I am sorry you are dealing with this.


Isewquilts....been there, done that, don’t want to do it again
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{{{impolite}}}

The whole situation sucks. You seem to be managing the best you can. I have no useful advice. Hope things get better for you.
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I am sorry that you are at your limit. I hope you find a way to recharge a bit.

Cosmos
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