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Hello everyone,


I posted a few months back (you can read my previous post for reference) regarding my mom and her mental state, and how my dad is not doing anything about it.


I decided for my own sanity that I needed to step away from the situation as there was nothing I could do. I haven't seen or spoken to my mom in months, and I quit speaking to my dad until just recently. I got fed up with offering suggestions to help only to be told "That won't work", or "That's just cruel, we can't put your mom in a home just because she's quirky".


Mom's behavior is is so beyond "quirky ". She still does the "birdbath" at the kitchen sink for as long as she can stand up, sometimes for hours on end. She hasn't eaten food in probably over a month according to my dad, and lives solely off Ensure Plus. Her weight has plummeted to 73lbs as of her most recent trip to the emergency room this past week. The only reason I took dad's call is because I thought he finally had enough and was going to demand an unsafe discharge, basically that he can no longer care for her and try to do an e.r. dump.


Dad took her to urgent care earlier that afternoon, and her dr said to drive her by car to the e.r and that the dr would provide notes to the e.r. staff about her "malnutrition ". Mom got frustrated after about an hour, and made my dad take her back home before she could be seen by the dr. Dad called me to vent his frustration that nobody will help him and nobody cares.


I should also preface this latest entry with a new "behavior" that mom has been doing since my original post earlier this year. In addition to her having bladder accidents on her sofa and carpet, now she has a new one: she stopped using the bathroom entirely. Yes, you read correctly, she no longer uses any toilet at all. What does she do?? She has what I believe is another "ritual", where my dad told me that he's walked in on her in the kitchen, and he says she has been going to the bathroom into those small styrofoam cups, like the ones you get at the dollar store in a big package. She takes layers of paper towels (Dad told me he goes they a case of Costco paper towels every week), then the somehow manages to "hover" over the little cup while she pees and poops. That's not all. She also has opioid induced constipation per her dr, and she is using her hands to manually remove poop from herself and she packs it into the little cups. While she is doing this, she is getting urine and feces all over herself and the floor, even though she puts down the paper towels. So, my question is, is this dementia, because she was tested supposedly and no dementia. She told dad she had an accident and couldn't make it to the toilet, but the bathroom is only a few feet from where she was. If this were a legitimate accident, she wouldn't be getting the paper towels, cups, and trash bags ahead of time, I believe. Dad sent me pictures on his phone of her bag of poop in a cup, and I lost it. He still says there's nothing he can do, nobody will help him, etc., etc.


I do not have the finances nor the desire to obtain guardianship. My mom was extremely abusive to me my whole life and still is, so I have nothing to do with her anymore. I do worry about my dad's mental state as nobody in their right mind would have put up with her for 56 plus years. Any other person would have left decades ago. I have offered many times to accompany him to the dr appointments, but he won't allow me to. He does not want the state involved, because he owns a home (not paid for yet) and he cannot afford private pay, she he'd have to sell his house just to place her, from my understanding.


I have thought many, many times about calling anonymously to report what's going on over there, but I always stop myself; I've even thought about sending an email to her dr, just to give her my perspective, since mom and dad aren't honest and lie/omit important details, which is preventing her from getting the care she needs. What do I do now?

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Your father is misinformed about what would happen if your mother had to be institutionalized. The "community spouse" is protected from impverishment by Medicaid regs.

But dad won't believe that, not coming from you.

I would call APS and report your parents' as vulnerable elders who are not able to care for themselves.
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Kas810 Oct 2020
Thank you, Barb, I wasn't sure with him owning his home and the fact there's still a mortgage on it, that he had any recourse other than to spend it down and sell the property. He keeps saying he wants me to have the house, but I'm not in a position to take over his property at the moment, and as long as she's living, she'd never allow it to happen anyhow.
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Wow, just wow! I’m so sorry for it all. First off, your dad would not lose his home if your mom goes into care at a nursing home. If they can’t afford to pay for it, she’d be placed on Medicaid and your dad would be protected to keep his home and a decent standard of living. And since you know that your dad is hugely mistaken in not getting your mom properly diagnosed and treated, what do you have to lose by reporting the situation? It’s already a strained relationship, sadly, so you’d be looking out for them and hoping to provide the rescue they so desperately need
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Your question was should you go over your dads head and talk to your moms doctor. Legally the doctor isn’t supposed to talk to you unless your mom has given permission due to HIPPA laws. However. That doesn’t prevent you from talking to the doctor. He/she just may not answer your questions. Some folks write a note or fax information for the doctor.
I will say that on more than one occasion when I have called a doctor to give information, the doctor was very grateful for my call and talked freely as they were worried about the patient.
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Your post just broke my heart.

Mom is WAAAAAY beyond what should be considered 'ok'....she has the ability to mentally function enough to gather her toileting equipment, but won't just walk to the toilet and use it?? That only would get her put in an NH.

As was explained to DH and me as we went over our financials, prior to reitring next year, if DH were to go into a NH, I would not be left w/o sufficient funds to maintain my lifestyle (not a lavish one, but normal, kind of frugal ones. In short, I won't be destitute).

If you can bear it--talk to dad or better yet, call APS and report to them everything you've told us.

Feces all over, not being able to bathe, living on Ensure--it won't take a rocket scientist to figure this out!

If you don't get along with your folks, best to have a 3rd party step in.

With COVID, most drs are not seeing the 'whole person' when they have visits. Looking at someone in a car--that's only slightly better than doing a virtual visit.

No, she's NOT quirky. She's sick. Call TODAY and follow through.

Hugs to you---I am gagging at the visual of what their place must be like.
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Kas810 Oct 2020
Thank you for your response Midkid. Yes, mom is perfectly capable of going to the actual restroom, but she chooses not to. I noticed a very strong urine smell a year ago during my last visit inside their house. It about knocked me over, and at that time, dad had to cut out another huge section of their living room carpet since she had saturated it. When my dad walks in on her doing this, she gets defensive and says "get the eff outta here!!", and "I'm having an accident, I couldn't make it", yet there she is in her full glory, hovering over a cup with paper towels in her other hand, thinking she can somehow "contain" the mess. Mom refuses to wear underwear, and depends are not an option, it's her way or the highway, and dad's scared to death of her. Sorry this is long, I didn't have enough space in my previous posting.
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You need to call APS. If Dad had stayed at the ER, the powers that be would probably not discharged Mom. Make APS aware that you are not in the position to care foe either of them. That there is a past of abuse and still is. That Dad is beyond what he is capable of doing. Allow the State to take over Moms care and Dads if ur not willing to take on care for him too. The State has the means of getting Mom placed quicker than you can. Getting Medicaid set up quicker. Be assertive and do not let them talk you into anything. Keep saying I can't afford guardianship and she is passed getting POA. Just keep saying NO!
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I am truly at a loss for words. I don’t know what the answer is to your parent’s issues but I have to say that I am so very sorry that you are struggling with this situation.

Please keep us posted. This is beyond devastating.
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I had a similar situation with my mom. Dad was just beyond his ability to care for mom who I am convinced had early stage dementia. I ended up talking to dads home health aide who was so very worried about the situation that she called me. I told her to call APS as my parents would not listen to me at all. It helped a little, their situation was not as bad as yours. But, that call at least convinced my parents to get help cleaning the house. Take care of your dad, my dad loved my mom even through her abuse. He ended up basically drinking himself to death to escape her. Everyone was shocked that he passed away before her as she was the fragile one, I wasn’t shocked. Your dad doesn’t really see the situation for what it is because he is stuck in it and loves her. Get APS involved and be clear that you are not an option. By the way, I called her doctors several times and they just ignored me.
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You MUST and I mean MUST call APS. Once you do that, stand back and let them take care of the situation. They know what to do and can get everything done for you. This is not just a mental problem, it is also a health issue for your father. Breathing in the urine smell can affect so many parts of his respiratory system. Someone who is not emotionally involved needs to deal with the situation and that is what APS is for. Make the call. If APS doesnt come by, call again. No, the will not take your father's home nor will they expect you to cover the costs.
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Furst of all, just because your Dad doesn't take your advice, doesn't mean you should stop talking to him.
You should deffiently kerp communication open.
Stop giving advice, just be a good listener.
You might have a beside potty chair and put it wherever your mom wants to use it as it might be possible that she needs a higher height potty and she may find the toilet is too low and hard for her to get up.
You should drop off a few sweet snacks tgat are easy to eatike yogurt, ice cream, apple sauce, soft breakfast bars and Little Debbie mini brownies which has pretty high count protein. Also milk to drink with her snacks.
Older people lose their taste and gravitate toward sweets so she can put a little weight on by eating these and other muffins, ect. At this stage it's more important to add some weight. My 96 yr old Dad's Dr told me I should make a huge batch of brownies for my dad to snack on all week. He said they did that for his father.

The fruit grain breakfast bars will have the fiber needed to help your mom not be so constipated.

INorway of all the paper towels, but her a box of bed pads that are approximately a 3 x 4 size or, she can use a big baby pad that can just be wiped off and used over again.

Juse realize that your dad wants your mom home and that's what your mom wants too.
You should help them by picking up the items I mentioned before, visiting them and lend an open ear and just listen and be supportive.

At this time, Your Dad needs you, not your advice even tho it might be right, you've given your advice, just don't punish him for not taking it.
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MaryKathleen Nov 2020
Bevthegreat, you sound like one of the world's sweet loving people. However, I think she is way beyond staying home. Tryng to pee and poop into a paper cup is not going to stop. She has quit eating solids period. Something was said about her having constipation from using Opioids. I wonder why she is using them and if that is causing some of her behavior.
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On Oct 5th, this year, I thought I had an answer to the following question:

12 different caregivers have quit on my parents because of their attitudes. Can anyone offer advice?
_______________

I'm going I'm going to repost my answer here, because it appears to apply:

Seems that it's time for YOU to level with THEM about how you perceive YOUR responsibility. Let them know that on-looking authorities are WATCHING YOU to see whether you have the ability to help your parents - - that if they keep doing what they're doing, even though they want YOU to help them, the State WILL step in, without THEIR consent, or YOURS, and take over their care, and strip THEM of their rights, and strip YOU, of making any choices on their behalf.

So explain, if THAT'S want they want, then keep doing what they're doing, because that is the eventuality of what will happen.

IF you try to reason with them, in all sincerity, and they're not able to "get it", then it's time to realize that they are incapable of making decisions in their own best interest, and you must do what you must do, sooner rather than later - - that is, NOW...
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If you do not have gaurdianship her Dr probably wont speak to you. BUT you can always try.

two wrongs dont make right. Holding your mother accountable now for things in your childhood wont make things better. I suggest you either put that behind you and step in or step out
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rovana Jan 2021
I have to disagree here. You can tell it like it is to the doctor. They will not talk to you about mom with HIPPA permission, but they can receive information from you. Also, I don't think the OP is holding a grudge here at all - It is important to understand family dynamics in getting mom help. If mom is abusive, then OP is wise to stay at a distance, for her own health, and also because mom will not listen to OP.
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What a difficult situation you are faced with. You could write mom's physician and give him the full picture. I do not think you can go over dad's head about arrangements. I would get some disposable chux from Amazon for the floor under a bedside commode. They also carry commode liners that absorb liquids for an easy cleanup. Could a daily sitter help or would dad allow it? Someone that could bathe mom. Her doctor could get a case worker to assist with an assessment and aide arrangements. Why is mom on opioids? She is surely addicted and this odd behavior may be coming from that.
Good luck!
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It is wonderful that you care enough about your parents that you still seek to help. You have offered to help and they keep rejecting your help. You are left at a point where only local authorities can MAKE them get assistance.

It appears that dad can no longer manage your mother's care. Take your mom to the ER with your dad. Show them the picture on the phone and let them weigh your mom. Let the ER staff admit your mom to try to evaluate all her issues and get her into whatever residential facility that social work recommends.

Otherwise, report this to Adult Protective Services and let the system deal with it.
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I would write to the doctor exactly what you told us about your mother - no holds barred! Call them as well, to let them know the situation is beyond safe and that you are going to follow up with a letter describing the situation. Once they are notified, it should be on them to contact APS, but it would be best for you to take that step as well. There's no way for any of us or you to know what's behind her behavior, but it is definitely red flag time! If possible, print that picture and send it with the letter to the doctor and APS.

As others noted, without POA or guardianship, they won't talk to you, but they can take input from you. IF they choose to do nothing, send the same to APS unless you already contacted them. This is NOT normal and is very unsanitary. Also, 73 lbs??? The ER documented that and didn't follow up (yes, she left, but good lord, unless she's of tiny stature, that is ridiculous! I weighed 99 my last year in HS. I had to get on nutritionist's case while in hospital on TPN (not allowed to eat) as I was losing weight. She thought 1200 cal was sufficient to get me from 102 to 110, but at the time I finally asked about the cal (not on the bag), I was down to about 91!!

Perhaps send letter to doctor AND APS at the same time, to ensure someone might take notice. I'd also call APS prior to the letter, explain all this, but follow up with the letter.

You don't live with them. You don't have POA. You don't have guardianship. If ANY of these people you contact suggest you step in, make it clear that your mother is abusive and wants nothing to do with you. Any suggestions for you stepping in should be met with a very firm NO. You are NOT required to take care of your parents. You can show some compassion in attempting to get help for them, but you don't have to be any more involved in it than that.
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Mom needs to be in a facility. This is way over dad's head and it may be that hanging on to his house is really the only thing making him continue w/this weird behavior. Since dad sent you pictures, maybe he's finally coming around.

No, they do not have to sell the house. Make that very clear to him. Even if you have to pay yourself, take him to an elder attorney to assure him about this. If they are at or under the income limit for state assistance of Medicaid (instead of self pay at a facility), they also consider the fact that one might move to facility and the other stays at home - it's called spousal impoverishment. It's designed to leave some income with the person at home so they are not 'impoverished'. Your local medicaid office worker can discuss this with you, too, and give you a list of things you would need to apply.

Then sit down with dad and commend him for trying as much as he has, but list the things that have grown out of his control. Don't blame him - point the finger at mom. SHE refuses to eat - you know he has tried to change it but at 73 lbs she is too close to just dying under his watch. If that happens, he might be questioned as to why he let her wither away. SHE is now peeing and pooping in cups and he can not do anything about it. You may not have a dementia diagnosis, but there is definitely something wrong in the brain. After this conversation, it's time for an appointment with the dr. Have it set up prior to conversation so there's not much time for him to 'think' himself out of it.

As for the doctor, if they refuse to let you visit - send dr a letter to let him knw what is really going on in the house. In fact, what you've written here is a pretty good start. Tell him that your preference is for mom to be admitted to hospital to get a thorough exam and on an eating program, then release to a facility. Be specific that dad is only keeping her because he's afraid he'll lose his home and has gone as far as he can in trying to keep her in the home. Request that dr be very frank with dad that what he is doing is no longer working. Yes, he's keeping her in the home, but she needs more medical oversight than he can give.

Good luck. I hope dad is really ready to get her help that he can no longer manage on his own. And, by the way, get your name on any document at any facility that will allow you to talk to dr, hosp, etc about mom's health care.
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You can contact her doctor.
The doctor may not be able to reply to you but you can inform them of the situation.
You can also contact APS and report her as a vulnerable senior.
Both of these are options and you should follow through with both.
If you get a call from the hospital again if you get there before they leave I urge you to also ask to talk to a Social Worker and tell them that they can not discharge mom to home as it is unsafe.
these are beyond "quirks" and just the malnutrition is dangerous. as well as her "bathroom" habit is dangerous as well as unsanitary.
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It sounds like dementia to me. It is not unusual for people with dementia to have eating issues, and at some point they may stop eating. Do you know her end of life wishes? Some people do not want to be fed intravenously or even fed by hand if they are not capable of feeding themselves. If you call social services, you may open a can of worms for your father and mother. It sounds like your father may be in over his head, but can you let your father deal with it if he wants to, especially since you are not in a position to take over? Maybe you could offer your father help with getting her a bed pan, which is designed for that purpose. They also sell portable potties that can stand right by her bedside. My mother with dementia forgot about being toilet trained and she now wears the adult diapers. You just let her go in them and then dispose of everything. They can be torn or cut off to make them easier to remove. Put a pad under the middle of her body in bed to keep the bed clean. There are ways to clean people in bed and even wash their hair with dry shampoo. An experienced aide would know about this and could help your father.
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This is definitely not normal. It is dangerous for both her and your dad.

They will probably hate for it and It will be difficult but the best place for her is in a retirement home.

Definitely contact her doctor. Inform them of these behaviors. Write down her behavior quirks so as to not omit anything.
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Imho, your mother needs to be placed in a facility STAT.
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Kas810: One more point that bothered me in regard to your mother (well, actually a LOT bothered me) is that an urgent care facility typically calls for EMS when the health issue is beyond what they can provide (at least in the urgent care business here in my state of Maryland). The patient is not driven via chauffer by spouse to the emergency room.
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Oh my goodness... I thought my mom was the only one not using the toilet. She pees into a bowl (although she will use the toilet to poop.) Just today, I went over and caught her peeing into a bowl while in her fenced in back yard. When I mentioned this was not normal or safe she got defensive and claims no one could see her. Isn't this dementia? Because her doctor won't diagnose her. This us not normal "aging" Please call and seek help for them when you're able. Know you're not alone.
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I know that this is bizarre behavior. I just wanted to throw something out there.

My mom has Parkinson’s disease. She has mobility issues. It’s very hard for her to get up and down from a toilet, even with a raised seat with handles.

Do you think an elderly person with mobility issues would do something like hovering so they don’t have to sit on a toilet and have a hard time getting up?

I may be completely off base here. Just wondering...
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You need to get APS involved for both of them. Just call and ask for them to investigate the situation because you are not being allowed to help. Do not let APS, though, talk you into providing them care. In your home or trying to set it up in their home. Tell them NO! No POA, no guardianship. You will have a nightmare on ur hands. Let the State take over. This way getting ur parents placed will be easier and getting what they need wilk be easier. There are mentality problems on both sides if ur parents think this is normal.
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