My mother was in a nursing home only approximately 70+ days before experiencing bed sores from being left either in bed or wheelchair. Before the nursing home my mother was very active. She walked to the bathroom on her on although totally blind. She went up and down stairs at least twice a week and went out to lunch daily. Bed sores on her backside and skin breakdown on her right big toe led to 2 emergency room visits in 5 days. In the 2nd visit she was admitted to hospital severe dehydration and UTI and right big toe had developed gangrene not to mention MRSA infection. After a hospital stay of about 35 days my mother passed away. The guilt is overwhelming because I feel if I could have kept her at home she would still be with me. However, I also feel the nursing home was negligent in her care. Is there some regulatory authority I can report my concerns to?

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Fyi, "The State" is the New York State (or the name of your state) Department of Health. Do you know how long it took me to find that out?
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Oh, Lord. I am hearing this over and over again Onlychild15. I'm so sorry. No one gets well in these places. This is an epidemic. Just had a friend die of C diff but that and MERSA are rampant. I understand the guilt. I'm beating myself up for not spending the nights at Manor Care. Mom was there 3 weeks plus undergoing radiation which I had to arrange transportation for. It was during our biggest snow. She developed hideous bed sores because no one changed them at night or helped them to the bathroom.

You can contact agencies in your state. Find out who and what represents these people and write a complaint and I think you may have a law suit but if you're like me you don't have the strength to fight one. Prayers and love to you Only Child. Me too and there was no one here really for me. So don't feel guilty. You did the best you could. Your case sounds so much like mine. I have come to the conclusion no one gets better in these germ filled hell holes. Pardon my French, but it makes me angry.
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I, too, called the state twice. They came and investigated my mother's black eye and because no one would be honest with them, nothing came if it. However, it scared the staff enough that my mother's treatment got better. I'm convinced that some of the worst people alive work in nursing homes. The way I and other family members are treated is horrendous. They're rude, mean, defensive. But I digress. You can also report them to the joint commission, your local ombudsman (who can tell you who else to report it to and who can also give you the state's phone number), and according to a new law, the police. I would start with the ombudsman. They can help you with all your other reporting.
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I just have to put my 2cents in. My daughter has worked in rehab/nursing facilities in DE for 20yrs. She has never made a statement that the patients are not cared for. As an RN she would not have tolerated it. I do agree that they tend to put the fall risks into wheelchairs. This is to protect them from liability. My Mom fell using a walker. I feel Mom gets better Care at her NH than she did at her AL. No one is happy to be anywhere but home. Some people tend to decline. This is really hard on Dementia patients. They don't understand.
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I would highly recommend that if your mom has not yet been buried, request an autopsy report and get a copy of that report from the medical examiner who does the autopsy. I would then take a copy of that report to the nursing home's had department of nursing after first obtaining a lawyer who handles wrongful deaths and nursing home neglect cases. That's where I would start and then I would also get a copy of her death certificate signed by the for honor or medical examiner
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This is not a helpful thing to say---and I certainly in no way condone any of it---but 70+ days before developing a bed sore is pretty good for an elderly person that stays in bed or a wheelchair. Usually skin breakdown begins within 24 hours from the constant pressure on the blood vessels & nerves over bony prominences.

Nursing homes are horrible places. And I am saying this as a registered nurse for 30+ years. They are for profit facilities that do the bare minimum so they can collect the maximum payments to make sure the CEO & upper level administration gets their huge salaries & bonuses. There is a lot of theft, deceit, insurance fraud & tax fraud that involves nursing homes. When 2 nurses have to take care of 80+ patients on any given shift, there simply cannot be quality, safe or effective care. Medicare doesn't care if someone sits in a wheelchair all day without being moved or walked. Most long term care facilities have developed "rehabilitation" units where patients get better quality care, more attention & have better staffing than the "nursing home" units of the facility because they get paid a lot more for short term rehab. If any short term rehab patients develop bed sores, the facility would have major problems with the state.

You don't say why your mother stayed in the LTC facility for 70+ days or why she was there in the first place. How often did you visit her & did you voice your concerns with any of the nurses, social workers or supervisors while she was there? I know your focus is on the bedsores, and that's fine because bedsores should never happen---but a much bigger issue is actually the severe dehydration, which should not happen in a LTC facility. Was she able to feed herself & drink from cups by herself, or did she require assistance? When you visited her, did you help her eat & drink fluids?

Did she live alone before she went into the LTC facility? Why did she go there in the first place?
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Sorry – good luck trying for any kind of response from State agencies against abusive nursing homes, especially if they’re large corporation with multiple locations. (Sorry also that this evolved into a LONG post – it just sort of became a therapeutic project?)

My Mom (95, centrally completely blind from MD) lived with me for 20 years but fell at home and broke her right hip and right wrist. She had ortho surgery on both in the local hospital, did wonderfully, and in 4 days was transferred to a “skilled nursing/rehab” facility, which severely damaged her feet in less than a week. She had really poor circulation, and thin skin, but I was diligent with protection and monitoring, and she was regularly under the care of a podiatrist every month, and a vascular doc every 6 months (or less if needed) for ultrasound studies, so any issues were quickly identified and treated promptly. When released from the hospital to the “skilled nursing/rehab” facility, there was no damage to her feet…

The nursing facility was made well aware of the fragility of her legs/feet, but in less than a week her heels were black and spongy (“necrotic”) because they didn’t float them… The tops of her feet were severely torn open from improper use of “TEDS” pressure stockings. I was there every day for hours, and repeatedly warned them – “bugged” them! – that her feet were getting red – getting blisters – being damaged – but I was ignored… By this time, Mom was on narcotic pain meds every 4 hours, refusing to eat, was curled on her side, and begged me to get her out of there or leave her alone and let her die!

I announced to any and all nearby that I was getting my Mom out of this H*ll hole (not that I’m a little assertive and stubborn, and was pretty darned angry!), and had her transferred to another facility – which was good and caring – but too late to prevent her from being hurt. The next year WAS spent in H*ll – several different facilities, wound care/dressings on her feet every other day, couldn’t even wear slippers let alone shoes… Her broken hip and wrist healed successfully, and the ortho surgeon said with “rehab” she should be able to return to pre-fall mobility. That would never happen…

Slowly, her feet were healing – really slowly! – but a huge ulcer/infection developed on the top of one foot where the deepest wounds were as yet unhealed, with exposed tendons, and she was given the option of amputation. She’s always said – and did now – she wouldn’t permit that, which only left hospice and palliative care for pain (until the infection killed her, of course…)

The next day the vascular surgeon called – said he didn’t believe in limiting access, care, procedures solely on age, and thought a bypass below her knee might work to establish circulation for healing. She made it through a 5 ½ hour surgery, then to ICU for 10 days (on vent for 3, which was removed with no problems), then to the next lower level of care for another 10 days with a surgery to remove 3” of exposed tendon… It worked! The swelling/infection in her foot went down and she was doing really well – until after several days her foot blew up again and it was determined that now she had hospital-acquired MRSA. Another (grim but “certified”) nursing home for a month that could handle daily infusions with strong antibiotics - on and on… too much and all preventable! Her final destination is now an Intermediate Nursing Facility, where I visit 4 or 5 days a week, and intervene with care or environment as needed.

All of this was directly the result of the first facility’s incompetence and lack of care/caring. Yes she was vulnerable – yes she had pre-existing bad circulation – yes she was 95 years old and had thin skin – but NO! She didn’t have to be damaged! She lived with me for 20 years, and we’d been through some issues with her feet but my diligence and her doctors’ prompt intervention had prevented what that “UNskilled nursing” facility did to her in less than one week!

I’d documented everything from day one! I had good photos of her surgical wounds, of her feet, and then ongoing photos of everything… I kept a daily diary of her care and any incidents, with dates/names/results. I should have had enough backup for a thousand investigations…

That would assume the nursing home wouldn’t lie? That the State agency investigating would do more than “interview staff and witnesses” several months later? What witnesses!? Of course the staff would be open and honest? Baloney! The State’s decision was that she had pre-existing issues that caused her damage, that the home had a “care plan” in place (they didn’t take the time to see from dates I provided that the “care plan” was only developed AFTER her damage when I had a fit and demanded a “care meeting”!)

I had obtained copies of all her medical records from 6 facilities she’d been in (I did mention she’d been through H*ll?), and took an entire week off to scan those records for all documentation of her condition prior to that nursing home (before accident - regular podiatrist, vascular surgeon – and then records and exit exam/documentation from the Hospital after her hip and wrist surgeries that showed her feet were undamaged when she went to the abusive facility – and afterwards when she suffered through the results of their damage.

The State agency ruled in favor of the Home first, I appealed and was granted a new review, but with the same result… Their reason(s)? As explained above, “She was already vulnerable to damage” (which the facility knew and didn’t take preventive measures) - “They had a care plan in place” (only after damage was caused and I demanded a “care meeting”). My photos? Inadmissible, because although they were clear and graphic close-ups, they didn’t show her “whole body” first, and then a partial, closer view, and then the close-ups, so her identity from only the feet in my pics couldn’t be established… (Hmmm…. missing one toe, scars from 3 prior surgeries, fungal nails, etc.) and I matched the pics/dates from the med records I’d obtained that were taken by several wound care and vascular practices during her visits to them…

I’d talked to a lawyer – he decided not to pursue a case because his nurse “consultant” didn’t believe the damage to her feet could have been caused in only a week… (Again, I had documented proof from medical records that it was). With the State’s ruling, it would have been too hard… Sheesh!

After all that, she went into a regular “intermediate nursing facility” – nursing home – where she’s now been for over a year. She’s 97 years old now… Physically, she’s now doing really well… The surgery was successful, the MRSA treatment was successful, and amazingly her feet have healed. There are other issues with where she is now – no place will be perfect – and I try to only raise a ruckus when care lapses involve her feet/legs. (They have, however, paid to replace quite a few articles of clothing that have disappeared, or been damaged, as well as the elevating footrests for her wheelchair that were broken by staff who didn’t know how to put them on and off…).

I’ve somehow gotten approval for outside therapy, and I take her to OT and PT each week, which has helped enormously. Now, though, she’s bored to tears, depressed because I can’t have her at home (she still requires a lot of help, there is no one but me, and I’m 67 with my own health issues). She’s also now getting short-term memory problems and at times is back in time about 50 years, so… I just couldn’t handle her at home all on my own. Even with “drop in help”, it wouldn’t work for me – I guess I’m just selfish enough that I’d like a tiny bit of my own life?

My final situation? I did everything I could have done – unsuccessfully – to protect her from damage in a nursing home environment. I did everything I could have done to pursue justice against those horrid people – again unsuccessfully. I tried everything I could think of, basically lost an entire year from my life, too. I’ve continued to visit almost every day, and advocate for her, in the current facility. Again, my life is mostly hers… I tried my best, I can’t do anything else, and although it breaks my heart, I just have to let go of as much of the bitterness and anger I have because it's consumed my life...

Would I try to pursue a claim against a facility with the State again? Probably not, because I will forever believe it’s all a waste of time and energy, and the odds are simply firmly with the facility/corporation. I’m now terrified of ever going into a nursing home (even to the point of nightmares!) – there will be no one to advocate for me! – and I plan to do everything I can to avoid that if I’m able…
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I learned the hard way ratings mean nothing. Unless something is reported, people only hear if someone writes something good. Even more so, after having my mom in the hospital for a stage IV bed sore acquired at a so-called well-rated memory care facility, I found out none of the so-called well-rated nursing homes would take someone with a bed sore and we could have private paid. They are rated well because they take people who don't have issues such as a bed sore. They mainly take people who are coming for rehab (high reimbursement for them) or are private pay for custodial care and have no costly issues or won't give them a ding on a report such as a bedsore that wouldn't heal would.
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Onlychild, I'm so sorry about your situation - and I appreciate the notes on where to complain that Shane described, including notes of when you spoke to staff about your concerns. You don't say how old your mom was, or why she went to the nursing home, so I hope that before then, you feel proud that she was cared for and loved.

If your mom was still alive, I'd say, complain to everyone, and also keep records. I find that our medical system is set up the same way everything is set up in our business oriented society: the burden rests on the party to demand care, or complain - and this neglect is chronic for some patients - those who do not fit the norm of care. Caregivers are hired for shift availability - I don't think it has anything to do with those who don't speak English well, for in the countries many of those people come from, elders are cared for at home, and very compassionately, even if realistically.

But our authoritative system does not work for those it leaves out - and someone who is blind is regularly neglected, in places where care is set up for different ones, partly because they cannot see and complain. I helped a blind client who had to stay in the hospital for a few days - and when I visited, I saw the food on her rolling table, with the cover on it. I assumed she had finished, and soon an aide came by and collected the plate, with a rushed rote question, enjoy your dinner dear? And left. As we were talking, my elder lady asked when dinner was coming. She did not have dementia. The aide had just assumed that when she placed the dinner in front of her, that she would see it and eat - she didn't even know it had been there.

And bed sores ARE a sign of care neglect, absolutely. Good RNs know that, but it is essential to take prompt action, and keep checking every day or other day - and change the action if it's not enough. Relieve the pressure, and the sores can heal.

There is a wonderful product called Wondergel - a gel type cushion that is made in a seat with many air pockets - using that regularly as prevention is very helpful - yet our system - I have angry biases about how it is blocked to any new information that does not come through medical experts - thus solutions that help are not added, when extra solutions and attention are what are needed to prevent chronically developing issues. Medicine studies crises - not prevention, except by prescribing. There is knowledge about bedsores now - but nursing homes can minimize any problem that does not come to them through a doctor's plan - or they say "we'll work on it, provide more checks - but the staff are not trained to notice any small change - they are rotating staff, so they hardly get to know some of the patients at all.

Amazingly, I am not blaming them generally, because I have found that when I get them back on track and bring details to their attention, they do make a plan, but the advocate has to be persistent, not blaming generally, but persistent about every issue, for they take care of the ones they see. My brother gets showers, laundry done, and general routines, and has learned to deal with rotating staff changes every few years.

I keep him actively moving by setting up a plan for him to be transported to his Brain Injury rehab program - there, they work on skills with him - today he will play in a Bell Ringers concert. But last week, his transportation did not show up, the day he was to practice - I had told him to call me, so I paid for a taxi - but nobody in the nursing home remembers that he even has a concert - it's 45 min away, and in 5 years of many concerts, it would be nice if any staff went to witness, but never. They only know their own routines. Our system works on guidelines designed by fragmented sections of care - and informal noticing of anything that's amiss, by regular direct care staff - is often a casualty - without continuity of checking status, with open eyes, staff miss things, all the time. Sorry that i sound jaded. I'm grateful for the care they DID give, frustrated at how normal routines leave out essential details that create neglect.
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My heart goes out to you Onlychild15, as a veteran RN, I too understand too well the dilemma of putting a parent in a NH. First & foremost, taking away a person's independence brings out one's loss of desire to live. Many just give up on life, this alone predisposes physical vulnerability. 

My Mom refuses any thought of going to a NH, I support her wishes & at the same time fear any type of accident(& I can't be right there to see that this is addressed every day), she's 82.  It is a very hard road to navigate for anyone(especially if you can't do the care yourself). Not mention the caregiver's ability to give & sustain diligent daily activities.  You can only do the best you can.

Pray that IF an extended care facility is the only option, I would research the BBB for outstanding patient care, nothing less. I would be watching very closely for any signs of neglect OR abuse & bring ANY unwarranted action to the management's attention as Shane mentioned. 

No one can predict the chain events that any person endures during the phase of going to a NH (that includes Mom & you) that is operated by total strangers. You can only be supportive, make sure your parent knows you love 'em, and have your own support system as well.

Remember Onlychild15, you loved your Mom, you did the best you could & you were blessed to have her in your life. Be good to yourself & many prayers to you during this time of grief.
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You can report any type of abuse or neglect to the State.

I have to say something and this is not in defense of the facility or the employees but a bit of real life.
Bedsores are not just a result of neglect or poor care.
As a person declines the skin does begin to breakdown. The blood supply is not as good as it is in active people. The body is preserving the "most important parts" the core and brain so blood supply is more active there.
I had my husband at home. I got him up everyday. He had a shower everyday. I had a Hospice CNA 3 days a week. I had a Nurse in once a week. My husband was far from neglected.
Within 24 hours he developed a pressure sore on his right heel and started to get one on the left. We prevented it from progressing to an open wound but it sure did make me rethink the commercials I see with the "lawyer" that says ...if your loved one has suffered bedsores, a Nursing home call XXX-XXX-XXXX.
I am not downplaying what happened and it is possible that more could have been done to prevent your Mom's pressure sores.
And there is a good possibility that the MRSA was contracted in the hospital not the nursing home. MRSA alone is enough to make one that is already weak and with a poor immune system die.
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Believe me I understand. My Mom, who passed last year, was forced into a rehab home during radiation treatment. She had 5 left and had insurance and Medicare. I begged the doctors to let her stay in the hospital. All this was during a snow storm that left the roads unbearable. Long story short, I had 10 minutes notice on a Monday they were shipping her off to Manor Care which now I know is a horrible place. She had just had radiation. They packed her up like a sack of potatoes. The only thing I could think was to get a cab as I didn't know where it was and my street was blocked by the snow. She was late getting there and had diarrhea. Later I found out I had to provide transportation for her remaining radiation treatments. Who knew? I did and hired a medical van.

What I witnessed in my fogged state was unbearable and I have regrets that I didn't stay over night there. She was walking when she went in. However, the staff, few who speak English, left most of the patients in bed all night. Never checked on them. When she finally was "dismissed" she had hideous bed sores, couldn't walk, and wanted to die. The last day there the "staff" taught me what I had to do. Taught me shots in 5 minutes. Then said they would send a nurse over the next day. That never happened. Mom was suicidal and in so much pain. I was crushing oxycotin pills to give her and felt so alone I almost thought about killing us both. Somehow I had the fortitude to hire a nursing agency after no sleep and they hooked me up with Hospice.

I have to say I witnessed so much during the time I spent there during the days. Patients would ask me for help. I only wish in hindsight I had stayed overnight. Lately I found Mom's notes on the place and since she was so lucid I realize she was terribly abused, maltreated, and the care was awful.

She survived a few months after this debacle and we're almost bankrupt now as the nursing agencies where I am are expensive and one learns they have a big profit motivation. When I'm through with everything I'm currently doing this will be addressed. People have said I have a law suit. The bed sores were awful. Some on her spine. Her buttocks. She never walked again. Luckily she didn't get C-diff or MERSA but I have since lost another friend to C-diff. That makes 4 where I am. Another issue to address at another time.

The thing is when you're going through this, especially alone, you're so overwhelmed. You don't operate at peak performance in your exhausted state.

My Mom passed peacefully at home and I learned what I had to. That being said, these places are a mess, need to be investigated, and yes, law suits are in order. I have a connection with my state to register all this. I don't want money because there is not enough to fix this in my heart. Just making people aware of how awful these places are for our loved ones. They definitely need to be held accountable.
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You can report your concerns to the regulatory agency in your state that oversees NH care. With every patient's admission paperwork and posted in the NH somewhere (this is required by law) there is a Grievance procedure which outlines how a family member, patient or anyone goes about filing a grievance or complaint. 

A few things to review prior to this - Do you have documentation that you  brought your concerns to the NH staff prior to her hospitalization? Did you discuss your concerns regarding her care, i.e. her bedsores to the Director of Nursing in those 70 days & documentation to support that you have? Was she eating and/or being fed regularly? Any documentation of discussions you had about your concerns will support your case. 

I'm sorry to hear about your mom. Elderly folks have very fragile skin & that is a recipe for developing bedsores & skin breakdown. As with her toe, as folks age circulation is compromised & this too leads to skin breakdown & tissue death (gangrene). Reading your profile, your mom was 94 & perhaps her body was just tired, & her immune system couldn't fight off  all the conditions that she developed prior to her death.

There are so many factors to consider. Wondering why she was placed there and how long she had been there prior to her hospitalization? Was she diabetic? Other illnesses like high blood pressure? Just trying to help you realize that her pre existing health prior to her NH admission was a huge factor in helping her overcome the issues that eventually led to her passing.

It's unfortunately common for elderly folks to develop dehydration and UTI's, as well as bedsores from frail skin and poor nutrition.

Please don't feel guilty. You cared for her as long as you could & made the right decision placing her in a NH to assure her safety. Many of us bear that guilt (myself included). My mom was 89 when she passed and at the end she started to develop pressure sores on her heels. I did bring it to the NH's attention & they did provide an alternating pressure mattress as well as booties for her to wear and "floated" her heels to help keep the pressure off. As a RN it made me sick to see that my own mother was developing pressure ulcers but there was not much else we could have done. 

I know it's not easy to cope with your mom's death. Please try to let go of the guilt you feel and celebrate the life you had together. 

Prayers to you as you grieve. 

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