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Started the Medicaid process to prepare Doc for either home care or a facility. They sent a supplemental asking for lots of “household” financial documentation and proof. Does that mean I have to give my tax records and all financial info to them, too? Seems so intrusive and makes me not want to do this.


Very overwhelmed....and beyond frustrated. Came home from court today and FIVE HOURS LATER I can finally sit down to write this. Walk in to a complete and utter disaster of sh*t smeared on the floor, had a dozen diapers disgustingly smeared and used to clean the floor, the counter, the walls and the carpet again. Husband rushes home from the office - drops all he is doing, to come and shampoo the carpet AGAIN.


Doc took 3 showers at my repeated insistence as he dragged his feet and spread it on the carpet and his bed, and still had it smeared on his leg that I had to clean, along with all his bedding AGAIN. This was the first time we’ve had to deal with this level of bowel issues. Now we are past little spots or leakage from the diaper. Now we are past the line that I cannot stomache. Now what?


How do my home caregiving friends do it? How do you breathe?? Laundry is still going and I challenge any one of you mates to a contest of who goes through more laundry detergent or toilet paper - I guarantee you, I’d win by a mile. Gotta go shopping AGAIN to stock up for this merry go round. Then the septic company (who was just here 6 mos ago), just came to respond to our call that it already stinks - as if it can’t get worse - we need a whole new septic.


Unbelievable. I can’t do this anymore and I don’t want to deal with the state digging into our financials. I do not want this responsibility anymore but God help me, I see no way out without having to sacrifice even more than we already have. We have paid so much and I don’t want to spend another dime on this madness, we don’t deserve this! Feel like a whip driven slave to mental illness. What hurts the most is that I do not feel anything other than negative about Doc, and he has been my loving father for 20 years. In tears and emotional shambles right now. I hate dementia and I hope I never ever ever encounter it again in my life!!

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You need a vacation and a stiff drink!
Im so sorry to hear of all your "poopy" troubles. This situation has gotten out of hand and should not be tolerated any longer.

Medicaid should not be asking for any of YOUR cpersonal financial information. Of course, they have a right to know about his, since he's applying for government aid (Medicaid).
Do NOT agree to release your info or pay them anything on his behalf.

You need to get your father placed in a facility ASAP. Can you afford a couple of months care while you wait for Medicaid to go through? If not, (and I hate to say this) but take him to the ER for some complaint (maybe diarrhea) and then refuse to take him home. Explain you take care of your small grandchildren and they have come in contact with your fathers feces. That should start an immediate emergency placement while Medicaid is "pending".

I had to place my mom (stage 6 Alz) when she started being incontinent of stool. My hubby (her part time caregiver) drew the line at poop. 💩

Good luck. I know you are ready to tear your hair out. 😩
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Reply to SueC1957
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I think the doc you consulted gave excellent advice. Pick a Friday, any Friday, and call to get the ball rolling toward the nursing home you've picked out. I understand wanting one more holiday season at home, but the season could be far more joyous for everyone with professionals doing the heavy-lifting care of Doc and your family in a supporting role.

You certainly wouldn't be the first family to have an elder law attorney help with a Medicaid application. Have you considered it? Have you called your Area Agency on Aging to see if they have some help with applications available?

It is time for a change!
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Reply to jeannegibbs
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igloo572 Oct 6, 2018
Jeannie! Your back! Your back! Thanks for returning to AC!
so what’s this weekends cake?
& what’s your plan for Halloween... spooky or scary?
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Surely God will grant you blessings untold for doing what you've done!

It will not matter to Medicaid about your household expenses unless Doc has been paying for them, which probably would have meant you couldn't claim him as your dependent for tax purposes either. I'm assuming you claimed him as your dependent because he couldn't pay for his own needs. Unless he's been giving away his money for the last five years, or can't explain where it went, Medicaid approval should be pretty smooth.

You questioned what an attorney could do for you. For one thing, answer your question about revealing your household expenses. Our experience in applying for Medicaid for father-in-law went like this:
May 30 he went into nursing home for a 5-day "hospice respite" so mother-in-law could have surgery. She did not recover well, so nursing home agreed to another 2 weeks at private pay.
2 weeks after surgery, MIL finally admitted she couldn't care for him anymore and agreed to meet with Elder Law specialist attorney because she didn't want to pay for the nursing home forever.
Got an appointment with attorney for June 22.
Got a list from the nursing home of what info Medicaid would want (you already know this, evidently), and took it to appointment. All their financial statements, insurance info, bills, titles to vehicles, prepaid funeral policies, etc.
The attorney agreed to get the application in before June 30, which meant Medicaid would start paying July 1 if he was approved.
We paid the nursing home for all of June, then told them we expected him to be approved for Medicaid for July. They kept billing. We kept them informed of what the lawyer said and paid them the amount we expected to be his obligation once Medicaid was approved.
Medicaid asked for some more info--pretty much stuff they already had been given--and the attorney took care of all the replies.
By September 21, his application was approved back to July 1, and Medicaid eventually paid the nursing home.

The cost for the attorney was about $7500 I think--paid for from father-in-law's funds--about the same as a month in the nursing home, so IMO paying the attorney to get the job done quickly was well worth it. I think the attorney knows how to present the information in a way that Medicaid is familiar with; and I think Medicaid trusts the attorney to sort of "pre-screen" applicants before submitting the paperwork, so I believe they don't expect the possibility of an attorney-submitted application being suspicious or questionable, as they might otherwise. Besides, he knew how to legally protect more of the family assets than Medicaid will tell you about if you go it alone.

So, I advise an Elder Law specialist.

As to nursing home placement, if you already have a good facility available, I urge you to not wait. You can have a beautiful holiday season with your family, including lots of pleasant and cheerful visits with him in his new home. Pleasant, cheerful visits; decorating for the holidays, sharing special treats, music, stories. Not horrific, gagging, carpet-cleaning sessions--or were you just thinking about having some Halloween fun with the neighborhood kids: "Come inside, my sweetie, and see what we have for you in here........mwa ha ha!" Sorry......that just came to mind, and I am just crass enough to say it.

I hope you get my point without taking offense, because I am sincere in wishing you and Doc and all your family all the best for now, for the holidays, and in the future. Please get outside somewhere for a deep breath of fresh air with a promise of a better future. This is what the Doc who loved and cared for you did that for--for you. You honor him with your gratitude for that, not with sacrifice. He never wanted you to make this sacrifice--he only hoped that one day you'd be happy because he helped make it so. Please don't dishonor him now by replacing that joy with a misplaced sense of responsibility that only brings you misery and him embarrassment.
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Reply to Agingmyself
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Dear Caring... God help me, I am right there with you! Am 24/7 caring for my 84-year old husband and though I have not as yet had the feces smearing thing, I walked in the bathroom yesterday after helping him to sit, to find him rinsing his bowel movement into the sink, with it running down his legs and piles on the floor around the toilet. I was gagging at the smell and cleaning as fast as I caould. I stock up on paper towels and disinfecting wipes plus aloe wipes for him and ointment for his sore bottom, plus a urine disinfecting liquid for the many loads of wash. I sympathize with every word you say. I have no money at all for the kind of respite care that he now needs. He was a caring husband five years ago. He is a blank and empty shell now, yet he can somehow muster a semblance of "normalcy" when his adult children are around-which is rare. They are in full denial of the severity of his condition. I have completed the application process with California's Medi-Cal and now I wait for the first denial-at least two months. The psyche facility I was referred to by his PC, as it turns out, does not take dementia patients at all, and the geriatric psychiatrist does take Medicare-but only for the initial eval. After that she requires a monthly visit at $80 per month, not possible for us. I wish so much more for us all as we try to navigate a world where medical advances save lives, but nothing is being done to help families deal with the lives they are saving once dementia sets in.
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Reply to She1934
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Caring,

I just want to repeat what the others have said. Medicaid is interested in all things Doc. Financials, bank statements, investment information, properties, etc. This does not mean yours and your husbands or anyone else in the households financial information.

Be prepared, just because you submit something for Doc you may be asked to resubmit or submit for a third time. Things fall into a black hole, get lost. Keep copies of everything.

You really do sound exhausted. If you have started the Medicaid process there is light at the end of the tunnel.

Hang in there. (((Hugs)))
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Reply to lizzywho61
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Caring, have you thought about consulting with an experienced Elder Care attorney?
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Reply to BarbBrooklyn
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Ive said it before and I’ll say it again - there are many similarities between autism and dementia.

CaringForDoc - several posts ago you asked what a bathrooming schedule looks like.

In the world of autism it is referred to as Trip Training. It’s lengthy to explain the method so I’ll refer two sites whom I think do a good job explaining and use steps and techniques that should be fairly easy to tweak to elder care.

One is AutismSpeaks and the other is Milestones. Look for Trip Training or Toilet Training on their site search.

A few things to keep in mind -

Toileting on a schedule requires that someone is with or available to the individual pretty much all the time - at least until a successful schedule is set - which can take a while.

Dont discount the use of actual pictures set in sequential order as a storyboard. Not now and hopefully not ever, will it come to this for Doc - but some elderly individuals with dementia can start to loose the meaning of words. They can also forget the order in which things get done - basic steps. As with many individuals with autism - the auditory is or becomes meaningless but visual cues still make sense.

Forget any language the site instructions may say about this being a process that leads to bathrooming independence- for those with bathrooming isssues related to dementia - Elvis has left the building.

And lastly - when instructed to leave the individual sitting on the toilet for X amount of time - keep in mind circulatory issues in the elderly. Even for able bodied individuals the legs can “go to sleep” when left in the potty sitting position - making it impossible to get up. Worst yet - upon getting up, with the numbness and/or pins and needles sensation, a person could easily fall.

Hope this helps you - or anyone else out there that might find this info useful.

Best of luck!
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Reply to Rainmom
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This sounds horrible. If FIL lives in your house, why does Medicaid need to see all of your financial info?

Too bad FIL (a former MD?) was financially irresponsible, but that doesn't mean YOU have to pay the price for it (which you are doing right now, correct, including a particularly high emotional price). I think you also mentioned in an earlier post that your own child(ren) haven't gotten the attention that they should have?

Things have gotten considerably worse than your posts of 5 months ago, yes? What was the result of all the testing that you wrote was going to be done?

You do NOT have to be stuck in this endless "chitpalooza" (word coined in another thread)!
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Reply to CTTN55
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CaringForDoc Oct 7, 2018
Now you’ve got me saying chitpalooza 🙃 good way to put it
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Three years ago, when I was 78, I suddenly developed liquid diarrhea and bowel incontinence, at which point I started wearing Depends to bed and went to see a GI doc. He did colonoscopy and took lots of samples, ending in diagnosis of microcolitis--which has no cure. I found out from online colitis support that I could send a stool sample to a commercial laboratory to be tested for sensitivities to specific foods...so glad I did, as it turned out I am gluten sensitive. Sensitivity to many things can develop in old age as our immune systems start breaking down. Medicare did not pay for these tests--my GI doc (or rather the NP) gave me a diet for Irritable Bowel Syndrome, which is not what I have, I have Inflammatory Bowel Disease and they are treated differently. After six weeks on gluten free diet I was much better, although still not completely normal, whatever that is. I still need to "go" 2-3 times in early morning hours, but consistency is relatively normal and liquid diarrhea and sense of urgency is gone. To be safe, I use Imodium when I travel out of my time zone, which I still do a couple of times a year. Maybe you should try Imodium (one tablet/day) with your dad. Or spring for the test to get gluten tested (that lab also tests for sensitivity to lactose, egg and soy but I am still okay with those).
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Reply to Arleeda
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It is very difficult and I totally understand. My mom is in beginning stages of dementia on set by stroke and has been incontinent the whole time. I cry a lot and pray daily and have a very supportive husband. I use exercise as my out... me time so I can cope. Hang in there 🙏🏾😇.
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