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

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)

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!

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.

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.

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!

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!

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.

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).

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!

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.

Try stay positive thinking. Try to make others laugh during the day. Being 24/7 ain’t easy. I don’t think there is a instruction manual for what 24/7’s go through. I had
2 shots and ain’t liquor or drugs. 2 shots of being 247. I call my case a double dose. my mother first and now father. As long as you’re capable of making others laugh and not bringing them down too? At least accomplished something. You made them laugh and you gotta laugh after you made them laughing and it doesn’t stop through whole day. At least its positive way of thinking and laughing trying to make a daily activity . You don’t need to go see psychiatrist, take medication, and so on. Etc... Etc... I

Medicaid will only be interested in your dad's finances. If he has been paying you for his care and upkeep then you will have to provide documentation that the money has been spent on his needs, such as transportation, medicines, clothing, incontenance supplies, etc.

I know this seems intrusive but Medicaid was designed to provide for people with no money or resources. The recipient has to spend most of their assets before Medicaid will pay for anything. He can have no more than $2000 monthly in income, cash etc. The government requires an accounting of the last 5 years to ensure that money is not being hidden through gifts or transfers to family.

if your father has assets you will have to spend the money down before he will be a candidate for Medicaid. This can even include a car that is needed for his use, special furniture, safety equipment, medical alert and similar high ticket items.

Have you consulted your states Senior Services office? They will be able to connect you with resources that may help you deal with some of your issues before he qualifies for Medicaid.

My mother did similar things about her pooped up underpants. She hand washed out a clean pair? I think not! Just tell me that you messed your undies. No dice.

If it wasn't for Caregiver Nation(Facebook), I'd explode. We share a lot on there. Mom's medicaid United Health and medicare offer catalogs I can order from. I purchased a pkg of undies to be on safe side. Mom hasn't started the pooping but leaks urine at times. Then! She puts soiled undies back in drawer, under her pillow, or under bed. :/

You convey everyone's greatest fears I think. Mine is so much simpler: Mom has never worn undies to sleep and so there have been some spots of poo staining that I have to pretreat, but nothing too horrible...not until today when I discovered her undies got soiled enough for her to change them and the heavily soiled stinky pair had been tossed down the laundry chute where dad throws his clothes etc. I threw out her undies, and went from there.
If you or your father have the finances, use some to connect with an elder law attorney to guide you through the process so you make the best financial decisions.
Other people have offered good advice as far as supplies; you might want to consider Costco? and there's a great company called HDIS that delivers to your door and it is their specialty.
Also, some people like carpet...others don't....and I hesitate to suggest this knowing your financial strain...but there are flooring options: one would be to get rid of your carpet and the padding and put in something hard and washable; there are also industrial type carpets meant to take abuse, some have carpet tiles and what gets wrecked gets lifted up and another tile gets put down. Or could at least be put outside until you have a chance to clean it if you want.

Will keep you in my thoughts and prayers. I'm so sorry all of us have to go through this. But I also know we have to remember our loved ones would not, do not want this to happen and have no control. It is a terrible feeling. I had a kidney stone a year ago, and came home after a day in the ER, and within a matter of hours was horrified and shocked that I just had absolutely no control over my bladder. Grateful that it was a short lived episode, but just stunned that it could happen and I couldn't for the life of me stop it. No one wants to...

Hello,
A big advantage of having medi caid is it will pay for the incontinence supplies. That will be a big help because what you need are bed pads to place everywhere you can without causing an accident.

Also you can protect surfaces with big sheets of plastic as well. I layer protective sheets then I only have to scoop them up and place in a covered garbage can. They come in all sizes.

I put some pads on the mattress, more on the mattress pad and more on the bottom sheet. I put doubles on her tv recliner and I’ve put them under her feet in the living room too, for when she stands and it lets go.

You said his stools got runny recently. You should determine what triggered it. Or he may have a virus that once resolved will end your frustrations.

I realize he is making matters worse but try to appreciate his attempts to clean up. Maybe get some huge wet ones to help him do it. And invest in some rubber back rugs. It really help s.

I notice that when the dryer is running I can still smell the bad scents so I’m adding more soap and getting some boosters as well. I’m aware that I’m sensitive to the smell but so what? That means it’s not clean right?

Lastly, it is so much easier when you have such grossness to wear disposable gloves. That leaves you with just the smell to deal with. They say that coroners put Vick’s under their noses to alleviate the stench. They oughtta know!

Good luck,
Charlotte

ps Sorry, I cant think of anything for the visuals. Try and think happy thoughts. Or don’t think at all maybe.

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.

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 🙏🏾😇.

CaringforDoc.

I can understand your thinking it would be nice to have Doc home for one more holiday season, but for me it would be a mistake. Far better to have fond memories of holidays with Doc, than ones where the festivities were interrupted by his incontinence and/or escalating poor judgement. You can always bring him home for a day from a nursing home.

Better to have a caregiver in the home minding Doc, than a poopy mess when you get home too. If you have confidential documents in your home, buy a locking filing cabinet, or put a lock on your office.

It is challenging to accept the new reality of Doc not being the same person he was just a few months ago. But accept it you must. After accepting it you must put into place the supports he (and you) need to avoid poop all over the house etc.

If any of Doc's funds have been comingled with yours, your husband's or the kids', then yes, Medicare will want the information.

Since Medicaid is medical aid from the State, they have every right to delve into your father's financial situation for the past five years. There is no way to avoid it. As others have said, it might be worth your peace of mind to hire an elder-care attorney to handle this process for you.

If you knew dad had a feces issue, why on earth was he left alone in the house for FIVE HOURS? That is akin to leaving a two-year-old child alone in a house. Please don't ever do that again. Please hire a caregiver for the times when you cannot be home to supervise him.

About the financial questions with the state looking into finances, there is a 5 year look back period where they have every right to look into Doc's history. They will NOT ask for your paperwork/finances. If it shows that Doc gave large sums of money to kids, to be able to get on medicare quicker, that will not fly. They are allowed to spend money on themselves to get their savings down to less then $2,000. (People buy electric recliners, walk in tubs, install chairs that go upstairs, etc.) Before medicare takes over Doc has to spend all his savings and he can't give it away.
Use all his savings to pay for 24/7 care to watch him not mess up your home. The state is quicker to help when you show all the paperwork of his savings of going to a person taking care of him. They also allow him to pay you as long as you have back paperwork that proves it week to week. They are VERY thorough before they put a person on Medicaid. Anything that remotely looks like you are trying to cheat will be caught. They are very good at their job.
It sounds like a never ending nightmare that you are going through right now with your husband. I am so thankful that you have the support of your husband. My husband has passed from cancer and now it is just me and my 95 year old Mom. I will never put her in a home, unless it is for end of life care.....
I know everyone can't do this.
Prayers and warm thoughts to you and hopes that you are able to get through this for a small light on the other side.

My heart goes out to CaringforDoc for all you are doing and putting up with! I hope there are some elder services in your area that can relieve some of the load! Please seek out a local senior center or council on aging to see what's available. Try the town, county, and state levels. My qualified for an aide 3 mornings a week plus a lifeline, and we pay $69/month for it. Her hours and cost are based on needs and assets.
I downloaded the Medicaid application for my state, and I don't know how anyone can do it themselves! Even if I did, the chances of being approved would be slim. And the process would be long and frustrating since I'd be struggling to understand what info they want, going back and forth with more questions and corrections. By the way, lots of financial detail is REQUIRED, so we have to accept that. The elder care lawyer I spoke with charges a flat fee for handling the application, and his rate is $7500 to $10000, depending on the complexity of the situation/assets. Yikes! But I'm thinking it might be worth it since that's still less than 2 months of NH care. Other replies offer sources of help that may be cheaper, certainly worth a look!
Many of us share your feelings. You need to vent sometimes just to face the day. Please be kind to yourself and allow yourself whatever relief you can get.

I would go to local Dept. of Aging and get some guidance on your situation including the Medicaid process and possibly help find nursing home. Explore the possibility of getting counselling for yourself. look into getting an attorney. Your finances should not be required for this [unless you have custody/ tax benefits, It is important that you take care of yourself and your family first.

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).

Caring,

An Elder Care Attorney may have someone in their office than can handle the Medicaid application, or advise as you go through the process.

My Moms Nursing Home Social Worker offered to handle the Medicaid Application. But, like you, There were a couple of possible stumbling blocks that I wanted answers for, so, I made an appt with my Moms Attorney. I learned a lot of things I didn’t even know I needed to know AND they had a retired Medicaid employee on their staff that handled Medicaid Applications.

Moms application took longer than the normal 3 months estimated at that time. It took 5 months.

So, yes, you DO need to see an Elder Care Attorney. If only for a consult to get a few questions answered. Ask the question about Doc having been claimed as your dependent first.

Good Luck. Glad you are having a quiet morning.

I too had my family helping to apply for Medicaid, but it got too overwhelming for all of us. So I hired a lawyer who handled the whole process. The application was approved On the first passj. I’ve been told that the first pass is almost always declined. It was painless and money well spent.as long a your money situation is legitimate you should have no problem going with a lawyer.

i don’t remember the lawyer's name. I looked him up on the web. Look for lawyers specializing in Medicaid.

God bless you and your family greatly for all you do for Doc.

I read your posts and I think what an amazing, loving family and how blessed this man is to have you all.

I pray that an elder law attorney can help you with the Medicaid application and get him placed where and when you desire.

Hugs to you all!🤗

First of all get him a casemanager at a mental health center...then he or she can help him get the right care...like a p.c.a. but...it sounds like an assisted living home would have more help for him..
Sounds like your pretty young and you need to be able to have a life of your own. Get a casemanager and they can help with any and all paperwork to get him in assisted living. AND YOU CAN STILL VISIT HIM...Like a couple times a week/month. This process could take a few months to a yr. But have patience..Hes your dad 😎
Im not a caregiver/p.c.a.
Im a client at a mental health center with a casemanager and therapist. I also have incontinence..both ends..i also have a bladder prolapse and a rectal prolapse herniated into bladder.
Yes i have mental illnesses and tons of chronic pain.
Im 55 and 1/2 yrs OLD..
Wish i could come help you and Doc / dad...but ???
I WILL BE PRAYING FOR YA"LL ...GOD LOVES YA"LL AND SO DO I ...MAY GOD INTERVINE AND SEND HELP...You do your part..(casemanager) and GOD WILL BLESS YOU WITH SO MUCH LOVE IN YOUR HEART FOR DAD AND GOD JUST MIGHT BLESS YOUR DAD TO GET BETTER if its in HIS WILL.
PRAYING FOR YOUR ENTIRE FAMILY AND COMMUNITY.
LOVE IN JESUS MIGHTY NAME..Georgia 🌹🐝🌹🙌
P.S. dont feel guilty...GOD understands and so do i...Thank you for careing enough to ask for help.
Its coming. 🌹🙌🌹

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!

Is your Dad (Doc) a Veteran?
If you do not know can you contact a Veterans Commission office or the VA and give them the info you do have, they can look up his info to determine if he is a Veteran. That will give you more help right there.

Personal opinion it sounds like you can not leave him alone at all.
Is it possible that you and your Husband can work out hours that will enable one or the other to be home when the other isn't?

Are there Adult Day Care programs in your area? He might be a great candidate for Adult Day Care. That would also give you a bit more freedom with your work schedule.

I would also check with the local Senior Center they may have help pr programs that might help in the way of caregivers or sitters for him as well as helping you navigate the systems as you apply for help.

Another great resource for you would be the Alzheimer's Association. You can call and talk to them at any time and you can ask what support groups there might be in your area as well as any other help they might offer.