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A couple of weeks ago, it became necessary for me to place my mother in a nursing home. I won't go into the guilt this decision has stirred up, and I thought I was handling it pretty well, considering...

But for the past week and a half, my mother has deteriorated rapidly. Her first few days there, we noticed an improvement. But I went in one day last week and found her mental status altered. She was way more confused than usual, and she's talking all sorts of weird stuff. What this looks like to me is her past pattern of UTI/dehydration, which landed her in the hospital three times in the past two years. She is also collecting fluid in her feet and hands, and having some trouble with breathing.

I know she's not getting her Parkinson's meds on time, and who knows what other meds are being administered incorrectly or not at all. She's unable to lift a cup to drink from, so I rely on nurses and CNAs to keep her hydrated when I'm not there, and from the looks of things, that's not being done either. Her mouth is so dry, she can hardly talk sometimes.

I'm there every day to feed her lunch and dinner, so I know what times she's supposed to be receiving her meds. When an hour and a half has gone by and the nurses haven't shown up with the medications, I go looking for them. I don't like having to do that.

I've spoken several times to the nurses (including the Director of Nursing) about my concerns and they always smile in that patronizing way and reassure me that everything will be fine, but I know my mother. This is NOT her "normal."

I'm pretty worried. My instinct is to get her out of there. Is this just a sneaky variation of nursing home guilt, or is there real reason for concern?

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All of the above reasons are valid regarding nursing homes in general. Don't put your parents in a general nursing home because it is convenient or cheap
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I would consult an expert or an elder advocate to come into the facility with you to assess the care your mom is receiving, at least until she adjusts. You must get her into another facility, if your advocate feels that the care is not going to improve.

Jack Halpern, CEO
My Elder Advocate
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JW I am so sorry for your loss. You and your Mom's experience and sharing it here will be very helpful to others in similar situations. Bless you and your mum.
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To the posters who haven't read all the posts..JW's mother passed 3 days ago. Finding another facility is a moot issue.
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There are many issues being raised by the above discussions. As a person who once had to place my own father in a nursing home, here are some observations from my experience.

1. A nursing home is NOT a hospital. Many persons do not understand this. The level of care is never going to equal that found in a hospital.
2. Most people go into a nursing home to die there. This is a reality. That's partly why the former term was a "rest home." They are not there to have a good time.
3. All nursing home patients need somebody to be their advocate and stop by at least once a week to monitor things. Sometimes it is necessary to "raise hell" with the nurse manager and drag him/her into the client's room to make them see what YOU are seeing. Take photographs, if necessary, and put things in writing.
4. In the case of the woman in question in the story, it's possible that she has simply moved into the next stage of Alzheimer's and some of the changes are more related to this. For example, people get to a stage where they "forget" to eat or drink. If a person's thirst mechanism does not instill the desire to get a drink of water from the sink, then they will become dehydrated.
5. In most states, nursing homes are very heavily regulated - right down to the nutritional requirements of the meals served. They are not allowed to serve excessively salty or fatty foods and all meals must contain certain percentages of protein & carbs. At the home in question, it is probably the fault of the cook who is too heavy-handed with the salt.
6. Despite being heavily regulated, most nursing homes will try to find ways to cut corners to save money and thereby hire fewer staff persons. Unfortunately, it's the clients who suffer.

Before I put my father in a NH, I "shopped around" to find the place that gave the best care. It was a Mennonite-run facility that was impeccably clean and the staff was very caring. The clients were always well-groomed and freshly bathed. The quality of the food in the dining room was excellent & healthy - I even had a few meals there. It was also a lot less expensive than most of the other facilities I saw, in part, because it was located in a rural county 2 hours away from the nearest moderately large city. Think outside the box....and find a better facility. It sounds like the place being discussed in this article provides sub-standard care for its residents.
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Very Sorry for your loss:0(
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Please sue them!
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I can tell you from experience that nursing homes do not always take care of the patients my father was in one for a year before he passed I went and onceand he have been on a bed pan for over an hour so I moved him out of that nursin so I moved him out of that nursing home I st so they never knew when I wa so they never knew when I was coming and that works good luck to you I know it my 88 year old mom has dementi my 88 year old mom has dementia now I know the day will com and I hate it god bless yo god bless you all
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My sister and I made a decision a few weeks ago to place my dad in a Home, but apart from feeling some guilt, we know he will not do well. He fears having to go and when he spent a night in hospital, they had him strapped to the bed as he went absolutely crazy. It is indeed very worrying, and we are still scouting for a good affordable home. Problem is we are running low on steam and its a no-win situation at the moment. He will not do well and the Homes we like, do not accommodate dementia patients. Nothing worse, when one deals with guilt coupled with the fact that she MAY not be treated well. I would question them. All the best.
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According to Jean Gibbs, your mom passed away - if so I'm so sorry to hear that...
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Directly put, NO this is not a case of nursing home guilt. Perhaps a case of shock and dismay at the way some institutions treat the elderly. In particular those who are FOR PROFIT. I would most certainly look at other possibilities particularly those with a 5 start rating as listed on Med.gov. The answer given by Torie J is great for a short term solution. If you want them to know you are serious, have a legal document prepared indicating that in the event of your mother's death her remains are to be sent immediately to the county coroner. You can have specifics such as the blood levels of her medications and the state of dehydration observed.included. Send the document to the head of the corporation, assuming this is a FOR PROFIT institution with a copy to the Nursing Home director. Of course you do not have to actually move forward with the autopsy and can change things at a later date. But this will get the attention of people who appear to have the best interests of the patient in mind, rather, they are leaders in a for profit organization. As indicated by the other contributors remain friendly and cooperative with direct care givers in general they do the best they can and are over worked and underpaid. One contributor mentioned the Ombudsman, this is a good source usually, but in my case I learned that the Ombudsman attended the same church as the Nursing Home Director and had know her for fifteen years. It is hard to be objective with this kind of relationship.
I would contact the Area Center for Aging or other state institution, they will want specifics such as how do you know her meds were late or that she did not receive hydration so be ready with times and dates. This will also get the attention of the profiteers, an investigator will be sent to review the complaint and a report placed on file. Request the medical records, even if you don't understand all the information, this is another signal you are a concerned advocate. I know this may be so stressful for you and that my advice is "hard nosed". You have my sincere regrets for your situation, my words are directed towards helping you to gain the dignity, respect and care level your mother and all elderly residents are entitled to receive. Finally, if we were talking about a child in a day care center not receiving their ADHD meds on time or given fluids, I'm sure more concern and public engagement would be heard. Both the young and the elderly should be given our greatest concern and protection.
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People, very sadly JW's mother is now beyond help. Please go to the end of any thread and check for developments before posting.
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Did you look into the history of nursing home you placed her in. You can go to department of health and find out if they had bad reviews. It will give you lots of information. Also ask many questions. Like how is staffing? Many places are under staffed most of the time. With both CNAs and Nurses. Talk to people who have family members there. Also speak and tell her doctor about what is going on. I am a CNA. I do not like what I see that goes on in places to work. I do my very best and try to cover the gaps when I am there. Staff is afraid to say much because their jobs hang in the balance. My advice is keep pushing. You do have the right to turn the nursing home in if you feel they are not doing their job. Don't hold back.
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I feel your frustration. I had to retire early to take my Mother out of a nursing home for some of the same things you have stated. Bottom line, they did not take good care of Mother. I have had her home since April 26th and her edema has diminished 95%. Her legs and feet were so swollen I had to buy her slippers 2 sizes too big and double wide. Now her legs and feet are pretty normal and the slippers are too big. Her skin was dry and scaly, now it is clear and soft. Mother has dementia among other health issues. Having her home is extremely trying, but unless she gets too aggressive and/or physically ill that she needs 24 hour MEDICAL care I WILL NOT put her back in a home. I had Mother in three (3) different facilities and the last one which was a 5-star was the worst. The year Mother was in the NH made her overall well being and mental health WORSE to say the least.
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START LOOKING for another facilty ASAP!!!
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JW, I'm so sorry. I hope it will be some comfort to you that your experience will strengthen me next time I'm worried about being too pushy; but mainly I'm just so sorry that your mother wasn't better served by the people you entrusted with her care. And I hope that those who have some explaining to do find some humility and grace as they go about it. Your family is owed a proper response to searching questions.
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I've been at this a long time with my Mother and yes she needs to get out of there STAT! More harm will be done the longer you wait!
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JW, I'm so sorry to learn of your mother's passing, but glad that you were at least able to be with her to give her comfort.

I appreciate your sharing your experiences. I'm sure you've inspired many of us here to continue to be vigilant in dealing with nursing homes.

And I do hope you file a complaint against them if you feel up to tackling that - you may be able to save someone else from the ordeal you went through.
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jw, my heartfelt condolences to you on your mother's death. I am glad you were able to be with her when she passed. You consistently did your best for her. May you take comfort in that.

Thank you for sharing your experience.
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Oh, and did I mention... when my brother went to the nursing home to retrieve my mother's belongings, one of the administrative staff had the unmitigated gall to try to get him to sign an arbitration agreement form stating that if anything happened, we wouldn't sue them, but settle out of court! How's that for ghoulish behavior?
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Thank you, everyone for your support, suggestions, concern and prayers. Yes, I spoke to the Director of Nursing, the charge nurse, and various LPNs during my mother's stay at that nursing home. I spoke to the "house" doctor who was arrogant and dismissive. I spoke to the nurse practitioner from the same practice who seemed to be able to relate. I spoke to the speech therapist, the physical therapist, the occupational therapist and the social workers, all on almost a daily basis. Unfortunately it was to no avail.

After leaving her at 7:00 pm last night, insisting that her vitals be checked before I left, and after calling there to check on her at midnight to make sure she was going to get a breathing treatment, I got a call at 5:15 this morning from the nursing home saying they had found my mother unresponsive, and running a temperature of 102 so they were sending her to the hospital in an ambulance.

She was in septic shock, had bilateral pneumonia and CHF and didn't regain consciousness. She passed away in the intensive care unit just shortly after 6 pm tonight.

Please, if you have any concerns regarding the care, or lack thereof, at a nursing home, be vocal and persistent. Hopefully your persistence will produce a better outcome than mine. The only saving grace is that she didn't die at that place, and that she went naturally and peacefully, while I held her hand.

Please keep my family and me in your prayers.
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I would recommend speaking to your Mother's physician ASAP! A couple of years ago, I had to put my Mom in a skilled nursing facility following hospitalization for a stroke. We were given only a few hours notice to make a decision. The place looked nice along with the people we spoke with, so she was transferred on Christmas Eve afternoon. It turned into a nightmare, with many uncaring staff, unresponsive call button response, and poor MD oversight, which resulted in my insisting they send her back to the hospital. They actually were having a party Christmas Eve and didn't respond to my Mom's need to be assisted to the restroom. After two tries of over an hour, she peed in a trash can. Turned out she had pneumonia which they had not diagnosed or treated. So, I would discuss what you have observed with her MD. You very well may need to change facilities.
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I would be concerned about your mother's deterioration. My mother came home from a NH as our money ran out. She was close to being weaned off the ventilator until her 100 days of Medicare ran out. All of the sudden, she had a serious UTI, a case of scabies, and broncho spasms. She went into the NH in March 2013 and by September, I was advised that my mother would not be able to be weaned off the machine. She became depressed, said someone owned her, and slept during a majority of our visits. There was a family member visiting at least 5 days out of 7 days. After they changed her trach tube in December, they kept her on pureed food as they did not want her to aspirate food into her trach tube. They gave me a very difficult time during the discharge process, but I took her home this past March. Her condition is 1,000 times better. She is eating solid food, has had no broncho spasms, is on less medicine. The NH also refused to do any physical therapy on her after her first 6 weeks, as she was unable to travel to the gym on the first floor. She has had physical therapy at home, without a gym. It will take her longer to get back to walking again as the NH left her bedridden. She does sit in a geri chair, but we have to use a hoyer lift for the time being. You need to be on top of the NH regarding her care. I became friendly with the staff, but it did not do any good. They swept her case of scabies under the rug, even though we asked about the rash on her body. One or two of the staff members confided in us about what was going on at the facility about medical issues, but the people that run the floor, will only put up with so many questions/concerns. When I left, I filled out a form asking for all her records, and I asked the Social worker if the form was filled out correctly. Her response was yes. When she told me the amount of pages, I would receive, I asked if that was the entire file, and she said no. I had not asked for all of her file. I then had to search the internet to find all the technical terms to ensure I would receive her file, and then pay a notary as the form was not filled out at the nursing home. It was a horrible experience, and I am now her full time caregiver, as I had had problems getting long term care through Medicaid. Don't trust the staff. Take everything they say with a grain of salt. If she is not doing well, don't assume it is her medical condition. It is most likely the care she is being given, especially since she was doing well at home. Good luck. Make sure you have the number of the ombudsman. Call him if you need help, and get a good elder care attorney. At my mother's NH, the administrative staff was walking around and having the residents sign over their homes to the NH without any notice to the family. GOOD LUCK!!
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Follow your instincts!
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sounds like real concerns to me, ask around about other nursing homes. this one seems like it is either understaffed or they just don't care. How many people are in this home, main insurances that are covering services. I am trying to think of other things to check on. My mom spend several weeks in a nursing home and all she did was sleep and it seems as if no one cared that she wasn't eating or drinking. They would get her up and washed in the morning, her meals would be left on the tray for her if she wanted to eat fine, if not, oh well. We had to fight to get her out, but she has been home with me since. It hasn't been easy but I have good help who stays with her when I am working.
Good luck, don't let them try and scare you into keeping her where she is, if there is some place better for her. And they will use any tactic that they think will work as not to lose the income.
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You know your mother and her health issues. I would go with my gut feeling and get her doctor to visit and assess her condition. If you are not satisfied, decide if you can transfer her home or to a better nursing home.
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If you have a feeling she is not being given the proper care and attention, then yes get her out of there. If you are a person who has good instincts and are right more often than wrong, deep down you are probably aware things are not right there. You will either need to quickly find another facility, or better yet ask her primary care dr to get her into a hospital for observation.

With your Mom's hands and feet swelling, that can be a sign of congestive heart failure as can more confusion. One of my brother's friends mothers, she lived in her own home, I think called him to go to her home, or he went there on his own, I know my brother and nephew told me the son said she was acting very oddly, even had diarrhea, he said she needed an ambulance, she scoffed, but he called one, she ended up dying of a heart attack. And I will never forget that his main concern was how strangely she was acting. At the nursing home or hospital has she ever had her heart checked by monitors and/or CAT scans or X-rays? They can show an enlarged heart. But with the elderly they can have disorders that have symptoms not normally associated with particular disorders.
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Yes, you do have cause for concern and should find another facility that can care for your mother properly. I'm about to move my father to another facility because the one we have him in now is just not providing the care he needs and we have been spoken to patronizingly as well. As soon as he got in the facility he started going down hill, in part due to them feeding him too salty food, when they know he is a heart patient and we've told them repeatedly don't give him bacon, sausage, ham, or other overly salty foods. And yet they continue to do so, thus leading to his repeated episodes of fluid retention. When we speak to the chef about this, he just smiles and says "don't worry we're gonna take care of your Dad". Sometimes it takes the staff a really long time to come when he rings his call button to go to the bathroom and he gets tired of waiting and gets up and goes without assistance, which having balance issues and being a fall risk is a scary thing. He had a fall in the bathroom on one occasion when he went by himself and bruised his head and I had to insist that he be taken to the hospital to be checked out. The nurse spoke to me patronizingly and said "well not everything is an emergency" when I expressed concerns about his injury. I went over her head and spoke to the head nurse, who addressed my concerns appropriately and had him taken to the ER to be checked out. Unfortunately that head nurse is no longer at the facility, so I now have no one in charge that takes my concerns seriously when something goes wrong. My father recently had an episode where he was retaining fluid badly and had fluid in his lungs and was wheezing. No one in the facility noticed and my sister and I again had to make the decision to call the ambulance. Now we have hospice coming in for a few hours each day and they are a big help in monitoring his condition so he doesn't wind up back in the hospital again. We were also disrespected by the director recently, when the hospice had brought in a hospital bed for him to try. My Dad didn't really want the bed, but they said to try it and if he didn't like it we could send it back. Well, he tried it for a couple of weeks and hated it. It was hard and was making his old war injuries hurt, so we asked the hospice to take it back. They didn't have a problem with this and said they would arrange for someone to come get it. But when the director got wind of this, on a day when we were not there, he had someone take my father's bed out of his room, leaving only the hospital bed and when my Dad protested and said "don't take my bed", he told him that this was his only bed now, and they placed his bed in storage. When my sister arrived the next day and heard what they had done she told the director that he had no right to take his property and made them return his bed and remove the hospital bed. The director told her they were trying to do what was best for him and that they have gone above and beyond to help him. He said if my father didn't like it there then he could put in his 30 day notice and leave at any time. So that is what we are doing. I feel in the time he was there, not only was his safety and health compromised, but that we were all disrespected. You have to go with your gut instinct, and if it is telling you that your mother isn't getting the care she deserves and needs, then by all means move her somewhere else that will. Our parents were advocates for us when we were helpless as children and now it is our turn to advocate for them when they are in this fragile and helpless state.
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Make sure you keep an eye on everything, and ask questions. Do not let them smile and brush you off. My father was in a nursing home with Alzheimer's, and continued to get worse. It got to the point he was almost comatose, he was sent to the ER. Turns out he was severely, severely dehydrated, and malnourished. We stupidly thought it was Alzheimer's progression. We we're never told he wasn't eating or drinking, if we were maybe we could have done something. By the time he was admitted into the hospital he had sepsis so bad that they could do nothing for him, after many attempts. We had to have hospice come in, and let him die. You know what is normal for your mother, and if no one listens, please don't wait too long, transfer her to someplace that will.
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You can go to the Medicare web site and file a complaint against the nursing home. http://www.medicare.gov/what-medicare-covers/part-a/reporting-problems-in-nursing-home.html

If you want to check out other nursing homes in the area go to http://www.medicare.gov/what-medicare-covers/part-a/choose-nursing-home.html
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