My 93-year-old mother has stopped using the toilet. What do I do?
I just want to start this post off by saying thank you to everyone here. It's great to have the support of this caring community and to have this forum to share my questions in. My mom, who lives at home with my medicated schizophrenic sister, has stopped using her toilet and has taken to wearing Depends 24/7. She relieves herself in them all the time. She sits in them, urine soaked, all day. She was released from a nursing care facility last December after a 3-month stay and her behavior has gotten progressively worse since then. I cared for her for 6 years, I live 3 hours away in another state and got completely burned out, so now my other sister, who lives 4 hours away, has taken over as care-giver. My mother has a homemaker that comes in to help twice a week, but after a visit to her primary care doctor a couple of weeks ago after we thought she had a mild stroke (she was having difficulty swallowing and balancing, her doctor said she didn't have a stroke), we decided to try and get her additional in-home care had a VN Association in to evaluate her and they discovered her current state was not good. When they examined her they found bedsores and a fungus infection on her inner thighs due to sitting in the wet Depends. The VN who examined her at home was so alarmed by her lack of personal hygiene that she called Adult Protective Services and reported her as being neglected. I spoke to that VN for an extended period of time on Saturday and she told me that my mother either needs 24/7 homecare or she needs to move to assisted living. She said she’s non-compliant and lacks the ability to make her own health care decisions and therefore she determined that she’s too much of a risk to take on as a patient. My mother refuses to leave her home, she’s extremely combative -- so we’re kind of stuck right now. She’s going to her PC tomorrow with my sister and we are having a Physician’s Evaluation filled out. I'm not sure what I'm actually asking for here, but thanks for listening.
She was admitted Friday evening and so far, with the help of a couple of psych meds, she's been relatively calm according to the nurses. When my sister visits her she starts to gets worked up and confused.
For some reason, my sister shared with me, she feels compelled to verbally revise the reasons she's been in the different hospitals over the last two weeks, she keeps telling my sister that they are "just treating her for her high blood pressure" -- at this point, there doesn't seem to be much of a reason to contradict her.
The edema in her legs got really bad in the last week as she refused to take a few of her CHF meds, the pressure stockings actually had to be cut off.
I'm glad she's somewhere safe and is able to just rest.
My sister has been up to visit her every day, but when she is in the room with my mother it seems to work her up even more. I am staying on the sidelines working with the social worker, attorney, probate court, etc.
The PEC is active for 15 days, so the plan is to get her into a Memory Care facility when she is released from the psych hospital. Fingers crossed that she isn't going to get tossed to the curb again before our Probate Court date.
Thanks for hearing me out and thanks for all the helpful suggestions and words of support.
Hopefully you're not buying these diapers out of your pocket, they're very expensive and will quickly break the bank. A friend of mine's mom was provided diapers by Who I think was his aunt until she could no longer afford it since back then I think she said they were about $23 a pack. She was also up in age and paying $23 for a pack of diapers all the time was getting to her financially, so there came a time she had to quit buying them. It was discovered that my friends mom was just too lazy to go to the toilet, which is why she always got infections. This is the other reason why the relative had to quit buying the diapers, to get this lady off the couch to take herself to the bathroom. When she couldn't get the diapers no more, she started wearing sanitary pads, which was giving her constant infections. I don't know what they do now that she's in a nursing home. I never go to see her because she can't get along with anyone. They even had to separate her from her roommate because she's usually the one instigating fights so they had to put her in a private room. Therefore, I hear you about some people being extremely combative and to some degree I don't blame them because they're trying to protect themselves as they age. If you can her to a doctor or even the hospital, I would have her checked for dementia or even Alzheimer's to see if this may be a contributing factor to her combativeness because it may be an end stage that went undiagnosed until now. If she had no doctor visits for quite a while, this would be a contributing factor of why dementia and Alzheimer's often goes undiagnosed because doctors may miss it. If she's tested by a neurologist and tests normal, then it sounds to me like she's probably just trying to put a wall up and protect herself to stop anyone from taking advantage of her or taking her where she doesn't want to go. However, the bathroom issue really does need to be properly addressed since this is an immediate health hazard. What I'd do first is find out who's buying the diapers and put a stop to it. This is what my friends mom's sister had to end up doing not only due to expenses, but because her bathroom have it was due to laziness. Though she switched to sanitary pads, she still had to get up and go to the bathroom in order to change them. She never wrapped them and you could see them when you went into the bathroom laying openly in the trash. The dirty sanitary pads were causing her infections since sanitary pads aren't meant to be worn all the time but were made for a specific purpose.
That's not to mention dealing with what I began to think after a few posts was a recalcitrant and not particularly responsible facility which sent her home when that seemed clearly to me was an inappropriate choice.
You might want to ask your attorney to order all your mother's medical records from that facility, since you raise the issue of addressing their negligence. That would be a first step, although I suspect that the records will be changed after a subpoena is issued. That shouldn't happen, but this facility doesn't sound very responsible, and it wouldn't surprise me if CYA suddenly became their driving motive.
As to filing an "official complaint", start with researching the state to determine if has oversight over the type of facility that Masonic is, if it's properly licensed, if there are other reports of noncompliance, etc.
If it accepts Medicare, Medicare used to publish results of inspections it conducts. I haven't checked recently, but you could always search the Medicare website or call it directly.
I also don't know if Medicare would take any action, but it might initiate an updated review after being notified of the problems that existed.
When I was searching for a facility over a decade ago, I first reviewed the Medicare rankings, selected potential candidates, then called them and specifically asked about the deficiencies (they loved that! Obviously I'm being facetious). I wanted to learn not only if they had addressed these issues, but also how they handled them as well as my inquiry. Some were defensive, others calmly explained.
Your attorney could probably help you on this, as to where and which issues to address in a state complaint to a licensing or oversight agency.
If you're considering a medical malpractice suit, she could also help you find a qualified and reputable medmal attorney. The first step after taking histories of the problems, issues, etc. would be to order a copy of your mother's records, not only from Masonic but from the hospital and the PCP treating her.
Med mal firms sometimes have nurses on staff to evaluate claims, or they'll send relevant data to doctors in comparable fields to determine if standards of care were breached. I.e., standard of care for a UTI or for pressure ulcers would be specific treatment. Failing to follow those standards MIGHT be grounds for a medmal claim. One aspect in consideration would also be what long lasting complications resulted from any negligence.
Be aware though that medmal attorneys, like any business, evaluate claims on a severity of injury, long lasting and/or permanent decompensation and results and similar issues. Sometimes medical issues which are resolved minimize or negate the value of a lawsuit.
However, that doesn't mean that a firm wouldn't necessary file, or at least initiate negotiations with Masonic's med mal carrier. There's still the pain and suffering aspect, and that can sometimes result in a nuisance value paid by the malpractice insurer just to close out the claim.
There's also the issue of bringing these failures to public attention, which certainly wouldn't be desired by Masonic, the PCP doctor or anyone else involved with lack of proper care.
The hospital discharge planner can offer suggestions as to other facilities, but I've found that there are often ones that are specifically chosen by hospitals, have representatives on staff, and that it's better to do my own review and analysis and choose the facility I want.
I would do the same for the home health care team. If you're satisfied with VN, go with them, but it's your right to choose an agency you want.
It was revealed that she hasn't taken any of her meds since she got out of Masonic on Tuesday and refused to eat. She has advanced CHF and diabetes, she is also being medicated for high blood pressure and polymyalgia rheumatica, as well as the pressure sores and the fungal infection.
My mother seems to have gone into a completely delusional state, she claimed that she was being held prisoner and that "god" turns her into a little girl every night. She started calling random people on the phone telling them that she is being held against her will as a prisoner in her own home -- which is odd as she walked out of the hospital and came back to the house on her own accord.
Anyway, the police showed up yesterday to investigate a report they got from someone that she's being held hostage. It turns out my mother repeatedly called someone's cell phone and repeatedly claimed that she was being held prisoner. That person called the police and gave them the number and the police tracked it down to my mother's address.
The police told my sister to call 911, which she did. Initially my mother wouldn't let the paramedics touch her, but they eventually got her into the ambulance and brought her to the ER at a very good hospital in the next town.
She was admitted and they discovered that she has a severe UTI with the possibility of kidney damage. Her legs are extremely swollen and they ordered a sonogram.
She's been a patient at this hospital on numerous occasions and they have always taken really good care of her and had VNs in place upon her release. We finally feel like she's safe.
The social worker at the hospital said she will be treated for the acute issues and when they are gone she will either be sent to a rehab facility or a geriatric psych facility depending on her mental state at that time.
Masonic Health Care of Wallingford CT really treated my mother like a piece of garbage that they couldn't wait to throw out on the curb. They released her with an active UTI and did not have VN care in place, as they claimed, which was a condition of her release.
Who ordered the VN to come to the home? MY SISTER AND I.
Why didn't someone examine her backside a couple of weeks ago when you said she was evaluated for a stroke? GOOD QUESTION, HER PCP IS ON THE VERGE OF GETTING A MALPRACTICE SUIT AGAINST HER NOW OVER GROSS NEGLECT.
Sounds like at that time she could have very well had the beginnings of a UTI then and it wasn't picked up.
This does sound like senior neglect. AGREE.
Your sister that lives with her doesn't assist her? Schizophrenics when properly medicated or even when they are not can help their mom to the bathroom. I know this from personal experience. YOU DON'T KNOW MY SISTER. NO TWO SCHIZOPHRENIC'S BEHAVIOR IS THE SAME. MY SISTER IS COMPLETELY APATHETIC.
Schizophrenics also have a sense of smell; no one, not the homemaker nor your live in sister noted your mom was sitting in urine/feces soaked diapers? REALLY UNBELIEVABLE, RIGHT? MY MOTHER'S BEHAVIOR IS DETERIORATING RATHER RAPIDLY.
There is enough blame here to go around. BLAME DOESN'T SOLVE PROBLEMS. ONLY ACTIONS DO, WE HAVE A PLAN NOW.
Are you sure her doctor's office didn't file a complaint and order the VN to go to her home to evaluate for neglect? NO, THE EVALUATING VN DID. I SPOKE TO THE VN FOR OVER AN HOUR AND SHE WAS REALLY INSIGHTFUL AND HELPFUL. I ALSO HAVE TALKED TO THE SOCIAL WORKER FROM APS, WHO HAS NOW GONE MIA AND WILL NOT RETURN CALLS TO THE ACCUTE CARE'S SOCIAL WORKER.
What is a "senior acute facility"? Free standing? Connected to a hospital? IT'S A HOSPITAL FACILITY CONNECTED TO THE MASONIC HOME SENIOR COMPLEX.
The "absurd" part is it has to even get to this point. YES, YOU LEARN THE HARD WAY THAT 50% OF THE PEOPLE YOU PUT YOUR TRUST IN TO CARE FOR YOUR LOVED ONES ARE ONLY IN IT FOR THE MONEY.
Are you with your mother now or still at your home hours away? I AM AWAY, MY SISTER HAS BEEN THERE FOR THIS WHOLE ORDEAL BUT HAD TO GO HOME FOR A COUPLE OF DAYS TO TAKE CARE OF HER OWN LIFE. I TOOK CARE OF MY MOM FOR 7 YEARS AND AFTER BEING COMPLETELY BURNED OUT HANDED THE SITUATION OFF TO MY SISTER FOW AWHILE. I'M BASICALLY DOING ALL I CAN FROM FROM THE ADMINISTRATION SIDE NOW, I'VE HIRED THE ATTORNEY, I TALK TO THE INVOLVED PARTIES LIKE APS, VN ASSOCIATION, SOCIAL WORKER, PROBATE COURT, ON A DAILY BASIS. WHEN YOU WORK TRY TO WORK AS A TEAM WITH YOUR SIBLINGS IT SEEMS TO WORK BEST WHEN THE DUTIES ARE CLEARLY DEFINED AND EVERYONE COVERS WHAT THEY DO BEST. I'VE WORKED AS A PROJECT MANAGER MOSY OF MY ADULT LIFE AND THIS IS THE ROLE I"M MOST HELPFUL IN.
Did you hear the staff say that or is your source a third party, or the schizophrenic sister? ALL MY INFORMATION COMES FROM THE PRIMARY SOURCES LIKE THE SOCIAL WORKER AT MASONIC, THE DOCTOR IN CHARGE OF MY MOTHER AT ACUTE CARE, THE CLERKS AT PROBATE COURT, THE ATTORNEY.
Why the need to get an attorney? Are you fearful of being charged with senior neglect? UNFORTUNATELY, THE ATTORNEY IS THE ONLY WAY TO DEAL WITH A SITUATION WHERE NO ONE HAS POA. THE ATTORNEY WAS HIRED TO PROTECT EVERYONE INVOLVED FROM MAKING MISTAKES. AGAIN, ASSIGNING BLAME ISN"T GOING TO SOLVE THE PROBLEM AT HAND.
Hospital/acute care/whatever the facility is won't even speak with him about your mother without a signed HIPPA form giving them permission from your mother to allow them to discuss her care. Were you able to do this? THE ATTORNEY SEEMS TO BE DOING EVERYTHING ACCORDING TO THE LAW. SHE'S EXTREMELY WELL RESPECTED IN THE COMMUNITY. THE PROBATE COURT WAS VERY HAPPY WITH OUR CHOICE. EVERYONE IS ON BOARD WITH HER.
They had her there for evaluation and were probably in the process of running tests and examining her & hadn't even made the determination of her status yet. No way would anyone, after seeing a fungal skin infection, two pressure sores, dehydration, and a UTI not keep her. I don't believe that. WHETHER YOU BELIEVE IT OR NOT DOESN"T CHANGE THE REALITY. THEIR FIRST RESPONSE UNTIL WE HIRED AN ATTORNEY WAS TO GET HER OUT OF THE FACILITY ASAP. THEY DIDN'T WANT HER THERE AND TOLD ME THAT I HAD TO TAKE HER HOME EVEN BEFORE GETTING THE RESULTS OF ANY OF HER LAB WORK. THEY SAID WITHOUT AN ELEVATED WHITE BLOOD CELL COUNT HER CONDITIONS WERE NOT CONSIDERED ACUTE BUT RATHER CHRONIC. BOY, DID THEY SPEAK TOO SOON. THEY ALSO SAID THE REFERRAL FROM HER PCP STATED THAT SHE HAD CELLULITIS, WHICH IS A FALSE REFERRAL. AGAIN, HER PCP HAS A LOT OF EXPALINING TO DO.
Two deep pressure sores? Again didn't you say she saw a doctor "a couple of weeks ago"? I am surprised whoever brought her there or the office staff/MD didn't notice this. AS STATED ABOVE HER PCP DIDN'T GIVE HER A PHYSICAL EXAM EXAM BEFORE THIS LAST VIST THAT RESULTED IN HER BEIG BROUGHT TO THE ACUTE CARE FACILTY. IT WAS ACTUALLY MY SCHIZOPHRENIC SISTER THAT BROUGHT HER TO THE APPOINTMENT 2 WEEKS PRIOR, WE WERE ON SPEAKER PHONE DURING THAT APPOINTMENT. PROOF THAT MY SCHIZO SISTER HAS NO CONCEPT OF WHAT IS AT STAKE.
Sorry for all the questions but something is wrong with this picture. YOU ARE TELLING ME! THIS IS WHAT HAPPENS WHEN A 93-YEAR-OLD SENIOR REFUSES TO GIVE ONE OF HER CHILDREN POA.
I hope she gets the care she desperately needs. SHE IS NOW, SHE IS NO LONGER CAPABLE OF MAKING THE RESPONSIBLE DECISIONS. SHE IS A DANGER TO HERSELF.
Sun Flo, you're probably right about AL, the root of her health issues always go back to her being non-compliant, I'm sure the same situation would arise at an AL facility.
And Countrymouse, thanks for your post, it was a much-needed hug.
My sister from PA went home for a few days and will be back on Tuesday. The social worker said it is best to not get involved in her transfer to the rehab facility, and to let the qualified medical transportation service provider bring her there.
The attorney isn't cheap, but her phone calls and her reputation in my mother's community have done a lot to get the ball rolling.
And the trouble is that when things happen as emergency there is no joined up thinking or communication and it's all a right buggers' muddle, as we say.
And as the primary caregiver has troubles of her own, and the OP is long-distance and in any case long burned out, and no one has power of attorney or even instructions as to mother's wishes... basically, mother is reaping what she sowed. Which is very sad, but whose fault?
I should go for the "lead, follow or get out of the way" maxim and be ready to help if asked but not ready to become the scapegoat. Any updates, any clarity? Please keep in touch.
This does sound like senior neglect. Your sister that lives with her doesn't assist her? Schizophrenics when properly medicated or even when they are not can help their mom to the bathroom. I know this from personal experience.
Schizophrenics also have a sense of smell; no one, not the homemaker nor your live in sister noted your mom was sitting in urine/feces soaked diapers?
There is enough blame here to go around.
Are you sure her doctor's office didn't file a complaint and order the VN to go to her home to evaluate for neglect?
What is a "senior acute facility"? Free standing? Connected to a hospital?
The "absurd" part is it has to even get to this point.
Are you with your mother now or still at your home hours away? Did you hear the staff say that or is your source a third party, or the schizophrenic sister?
Why the need to get an attorney? Are you fearful of being charged with senior neglect? Hospital/acute care/whatever the facility is won't even speak with him about your mother without a signed HIPPA form giving them permission from your mother to allow them to discuss her care. Were you able to do this?
They had her there for evaluation and were probably in the process of running tests and examining her & hadn't even made the determination of her status yet. No way would anyone, after seeing a fungal skin infection, two pressure sores, dehydration, and a UTI not keep her. I don't believe that.
Two deep pressure sores? Again didn't you say she saw a doctor "a couple of weeks ago"? I am surprised whoever brought her there or the office staff/MD didn't notice this.
Sorry for all the questions but something is wrong with this picture.
I hope she gets the care she desperately needs.
First acute care will call and threaten you and family to come and get mom. Once ur there they will tell you she needs 24/7 care.
Take it from me: DO NOT accept discharge to you or family.
They can't turn her out on street. If you go, they will force you to take care or arrange care and you'll be back to square one.
No one can accuse you of neglect if you refuse discharge.
Mom does need help. Unless dr signs incompetence and you have that with your POA you cant make health and do residential decisions. Sounds like dr is already kicking can down road.
It took me 8 yrs to finally get my POA invoked and a dr to finally sign. Mom is now in wonderful memory care and thriving. She was adamant to stay in house but finally got so bad and unsafe and bad hygiene that APS working with me helped get her placed.
I made a lot of missteps. Taking discharge of her twice and letting social workers bully me. Mom fired any help.
Good luck. Your best chance is this very moment. Tell facility you won't take mom until they sign a paper stating mom incompetent to manage herself; and they have to give you few days to find residential care. Start looking and asking for recommendations. If she is using depends full time and not caring for herself, AL might not be best choice, memory care might be better. Look for facility that only does memory care.
Sounds like at some point you're going to have to go for guardianship or have her declared a ward of the state if she's so non-cooperative.
Also, maybe consider a geriatrician for her, if her regular doctor is just an internal medicine guy or family practitioner. A geriatrician should be more aware of her kinds of combative/paranoid behaviors, as they're very common with dementia. Good luck and please keep us posted.
If you have the conversation with doc in front of mom she will deny anything said. If she is competent she has the legal right to make her own decisions regardless of how bad they are.