Medicaid process and bowel incontinence. Very overwhelmed... and beyond frustrated.

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.

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!

I don't understand why you waiting until after the holidays to move Doc to a facility, either.

Why not make the holidays nicer for your children?

My grandmother with (probably) Alzheimer's moved into our house while I was in high school. It was horrible. It didn't last but a few months, because my grandmother wandered (and my mother worked).

CaringforDoc, I'm not sure about the consistency and frequency of your father's stools. If it is normal consistency and only once or twice a day, then the solution may lie in getting constant care and never leaving him alone. However if he has frequent diarrhea, there are problems that you need to investigate. I myself at age 78 starting having explosive diarrhea 4-5 times a day in the early morning hours--like from 4-7 am. Internist said take Imodium every day, and that worked reasonably well. He also referred me to a GI doctor, who ordered a colonoscopy that wound up with a diagnosis of microcolitis and prescribed peptobismol 3 tablets 3 X day instead of Imodium once a day. The GI guy also recommended a diet free of gluten, lactose, eggs, and soy and only cooked, peeled fruits and vegetables. If that worked (needed a 3 month trial) I was to add each item back to see which would cause the diarrhea to return! Well, that lasted about 3 days, but I learned online there is a company that will analyze stool samples for these sensitivities. I had it done, they identified gluten--and after 6 weeks the consistency and frequency were much better. Not back to "normal," mind you, but good enough and controllable enough that I no longer feared leaving the house. This "gluten sensitivity" came on suddenly, or at least the manifestation of it did, and I can only imagine what would have happened if I had had dementia! (which is in my genes) Nothing good.

So very sorry that you are having this stressful situation. Anyone who has the same kind of unpleasant task knows the frustration and sense of helplessness (Doc may feel the same too). He may have to wear diapers so the mess is contained--and bedding that's plastic so it can be easily cleaned or removed. I agree with CharK60's suggestions, as well as others who indicated it is well worth going to a good elder care attorney to get him on Medicaid (but get good referrals from your church, local Alzheimer's center (regardless of whether he has dementia or not---they do know of the best local resources) or your state's eldercare SHINE counselors in your area)--- as attorneys and their rates are not all equal). Any diversions you can think of for yourself...cute songs or anything humorous...will help the "clean-up" time pass quicker and with less stress. Complaining tends to make the situation even worse because you are both "feeling" as well as verbally reiterating" the problem over and over. Try to find a group you can join where you can find shared experiences and solutions/options. Actually this website is a good online resource!

If your situation, so intolerable, is not changed, you will lose yourself and you will become so angry and unable to find yourself at all. You must place your loved one in a care center for dementia. I did that a year ago very reluctantly. It now costs almost $95,000 for one year, nearly all money gone and must apply for Medicaid this June. So much for the elderly in this country!

How to deal with the odor? Some caregivers put Vicks Vaporub under their nose. Not a joke. I don't know how else a person like yourself can get through such a mess. God bless you!❤❤ You must place your LO, else you'll fall faint and ill. How does one afford it? The patient applies for Medicaid. Of course, your LO won't be able to do it so you'll have to. I have to ask if he is on Augmentin? It is now on my do not take list as I had a tremendous colon malfunction in the middle of the night. Threw the med away.

Cholestyramine powder aka QUESTRAN 4 gram packets were the only thing that could stop my moms diarrhea in the hospital. It was prescribed by a gastrointestinal doctor. She also had to have a temporary tube placed rectally to catch the feces in a bag. She had no control over her bowels and I was constantly cleaning up messes. She still takes it to this day as she has digestive problems. It is normally used to high cholesterol but it works for bowel issues as well. Ask his physician about this medication.

I hate to remind people but Medicaid has s not an entitlement for just getting old. Medicaid is a program to assist elderly, ill, and disabled people with no money. If the person needing care has money and resources they will need to spend that money down to $2000 before they are qualified for Medicaid. Yes it sucks to be poor but why not spend the money to be comfortable?

I have been through the process with my father and will soon be doing the same for my mother. She has enough assets to live in a nice Assited Living facility for 3-4 years and then I will apply for a Medicaid waiver that will cover the cost. In Ohio the family is not responsible for her financial costs.

It would have been great if my parents had planned and saved for old age and ill health but they didn’t. I am happy to have Mom spend all of her money on herself and live a comfortable old age and have never expected any inheritance.

Ohio has a free service called Passport that can help you with finding help for your father. There is also a free legal consultation that was a huge help to me in understanding Medicaid. I did contact an elder care attorney but it would have cost $2500 for the initial consultation and that's just crazy when with a little work you can get the info for free!

So, Medicaid asked for all my financials the first time. It's just part of the standard form. Ever since then, they've been clear they only need Mom's. It might be quicker to give them your stuff so they don't come back asking for this or that clarification, delaying the process. I remember the original process and found it quite intimidating. Doesn't matter. Do it. If you get accepted, or rather, if Doc gets accepted, you are all going to be a lot better off. You can't stay in the 24/7 world you're in now too long without serious consequences. Once you get approved to pay for help (in any form) you are going feel a whole heap better and you're Dad will too - cause his caregiver's won't be at their wits end. Hang in there. Oh, I started taking antidepressants during 'that' phase too. If you're not already on them might want to consider it. Good Luck, Roxy (and Judy - my Mom and the person I care for)