Maryanne, one of my long-time US followers, wouldn’t use swear words like the one I alluded to in the headline — she’s a quiet, religious, God-fearing woman. So I’m swearing on her behalf because her story warrants expletives.
Maryanne (not her real name), is the primary care partner for her husband — let’s call him “John” — who lives with dementia, and who was relocated to a dementia prison (aka nursing home) several years ago.
In 2017, Maryanne was banned from seeing John for more than six months because she “complained” about the neglect and abuse she witnessed on a daily basis in the facility. She fought hard to regain access, and is now able to visit John again. At least for the moment.
But Maryanne’s visits are a mixed blessing. She’s thankful she’s able to see John, and to care for his needs when she’s there. However, she is also forced to silently witness the ongoing neglect and abuse he and his fellow residents suffer. She doesn’t dare say anything for fear of once again being denied access to John, whose ill health worsens each day.
Sometimes Maryanne’s frustration, despair and anger spill out onto her Facebook page. Here is an April 2018 update she asked me to share:
“It’s wrong to allow someone in a nursing home to go hungry because they are too drugged and tired to eat or unable to eat on their own or need prompts to help in eating and you don’t provide those prompts. It’s wrong and it’s criminal.
When a lady sits with a filet of fish on her chest all through her lunch and no one helps her that is a travesty. When a man who eats with his hands is given peas and carrots or kernel corn to attempt to eat but can’t, that is neglect and abuse. It’s wrong. I’ve seen it more than once. Stop it and do what is right instead of continuing to do what is wrong.
You may get away with it now, but in the end you will not. You are continuing a horrible practice on human beings that are created in God’s image and likeness. You do not have the right to play God and end their life by starvation or dehydration. Stop it now and feed your residents. Help them eat. Assist them. Let them take the time they need. Give them the care and nourishment they deserve and that is their right. Feed them for God’s sake!”
It’s hard to imagine that older adults living with dementia in long-term “care” facilities are being starved in the United States right now as I write this. But that’s John’s reality. It’s the reality of John’s fellow residents too. It’s also hard to believe that care workers would toss older adults around like rag dolls while “caring” for them. But people have been caught on video doing it.
Elder neglect and abuse happen more often than you might think. And that’s the godawful truth.
#wecancarebetter
https://myalzheimersstory.com/2018/03/10/videos-dont-lie-about-abuse-but-people-do/
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My Alzheimer's Story 
FFS…where in this country can a NH prevent a wife from seeing her husband for 6 months? Is that even legal? That in itself is abuse. She needs a lawyer.
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Believe me shortnsweet, Marianne tried everything she could. Eventually, she did find a way, but is still working on eggshells.
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I’m a geriatric social worker, care consultant. HOW was a facility able to prevent this man’s wife from seeing him? Every state has a Nursing Home Ombudsman program, every nursing home is required to post the residents rights and contact information. I find it hard to believe that this lady was not allowed visits. I’d like details. Now – I do see in facilities that staff do not make sure elders eat. They sit a tray down in front of them, do not help them, then just come back and take the tray. I often report incidents like this to management, I even do inservices for care staff in how to communicate with adults who have cognitive impairment, how to use visual cues, how to prepare a plate of food, etc. GIVE ME DETAILS, I can’t believe all the facts given here.
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Sara, thanks for your comment. You may not believe it, but it’s true. I know because I was also threatened with being denied access to my mother as punishment for my advocacy (I live in Quebec, Canada).
Maryanne lives in the US, I’m not sure which state. I will ask her if she wishes to answer your request for details.
This kind of situation is definitely not rare (though often hidden), and it happens around the world (for the UK see here: https://www.yourvoicematters.org.uk/bans-evictions-name-shame; Canada see this story: https://myalzheimersstory.com/2017/08/01/using-no-trespassing-orders-against-family-members-is-a-travesty/)
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In Canada, do you have Nursing Home Ombudsmen – that is our system of a state representative available through our office of Long Term Care. In a case like this, that Ombudsman would intervene to mediate an agreement. I’ve worked as an interim-administrator. I’ve had cases where a restraining order was legally obtained to prevent visiting, but in those cases the visitor was creating disturbances and trying to remove the family member from the facility when they did not have the legal right to do so.
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I don’t know about the rest of the country, but no, not in the province I live in. And of course that’s what the facilities say, that the person is “creating disturbances.” That’s what they said about me. What I was trying to do was to stop my mother from being neglected and abused, just like most people are who “create disturbances.”
For example: https://myalzheimersstory.com/2017/08/01/using-no-trespassing-orders-against-family-members-is-a-travesty/
These are parts of my Mom’s story:
https://myalzheimersstory.com/2018/03/18/alzheimer-didnt-do-this-drugs-and-dementiajail-did/
https://myalzheimersstory.com/2018/02/23/against-my-wishes-and-against-her-will/
As for Maryanne, she’s in New York state as she said.
With respect to getting “legally obtained” restraining orders, all I can say is just because something is legal, doesn’t make it right.
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Maryanne has answered with more details.
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I am the person Susan wrote about. I live in New York State. I am my loved ones ex-wife. He has a guardian set up by the County he lived in. I was his caregiver in my home before I felt he needed nursing home placement. When he moved to this facility, an hour away. He was first moved to a facility 6 hours away. I was able to initially help him eat, give him some care, but one day the guardian from the county came in and said no more feeding or giving care. I conceded until they were not taking care of his basic needs. I voiced my concerns and still they did not so I began helping him. First they took away my right to take him off the unit, then I could not be there for his lunch anymore but had to come after. Then I noticed he was allowed to eat with his hands and I voiced my concerns as he lost 55 pounds when he first got there. He was always too tired to eat at meals. So I was concerned about that as well as his dignity. One resident said he was the resident “pig”. They nurse manager would not do anything about this so I started coming to his lunch and seeing how he would do with a weighted spoon and he was eating with it, but he needed some prompts. I did it three times and he was improving each time until the NM came one day and said you were told not to feed him and I said I asked that he not eat with his hands and receive assistance and you have done nothing about it. I told them it was undignified to let him eat regular food with his hands. The NM, social worker and one other nurse met with me and banned me after they accused me of trying to poison him and tell me that since I was not eating with John he was gaining weight. Three or four lunches a week that I would sit with him compared to all the meals he eats on his own and I was told that. That was absurd. After two months I emailed the Admin and he said he would re examine my being allowed to come back in six months. Six months. That would be totally detrimental to him. My closest friend agreed to go once a week on the weekend to visit John. I would drive her down and wait. in the car during the visit and she would have him talk to me on the phone for a couple of minutes. She would also take some pictures and an occasional video. He was looking thinner and in a few looked like he was injured. She said his face was not washed and his hair was flaky and they lost his 2 pairs of sneakers again. I picketed peacefully while waiting on the sidewalk near the facility a couple times but he admin was more infuriated and I did not want my friend to lose access. People tried to help me gain access but the admin would not return calls, so I hired an Elder Advocate out of New York City. I paid him $600.00 to help me gain access to see my loved one in a NH. How ludicrous. There was now a new Admin. and at first she resisted but he told her he would call the attorney general and she conceded. I met with her finally and signed a contract which included a meeting agreement each month to bring up concerns and for a couple months things were good but then I saw neglect and he was beat up and burned and no one would say anything to me about it. I had to meet with the NM to try and get something out of her. All she said is the person is gone. He was at risk again for falls, on 800 mg. of Depakote plus other drugs and was losing weight again. We did agree to finger foods and I could bring food from home and I looked up many finger food recipes. They seemed to work well but their meals were becoming smaller and less appetizing. Three weeks in a row he got carrots and celery for a meal and jello. He has now lost 30 pounds since I was allowed visitation again. He continues to lose weight. The other day he had to get small size clothes with his funds. He sleeps so much and has difficulty staying awake at meals. I sit at lunch and bring food for him. I cannot help him eat as I have been told again or brush his teeth which they were not doing and I voiced my concern each month. Always an excuse. When I was allowed to do it he was very amenable. I said I would show the aides what has worked for me but nothing. I am concerned he is spiraling downward and will die from lack of food and nutrition and water. others have died in this manner. I could pick out the next “victim” and sure enough the person would die in a few months. When I was banned one of my favorite ladies died. Same stuff. Over drugged, sleeping during meals and could not eat. It is a pattern. I have complained to the state, our local news channel who has done stories on NH, but nothing. He is going to receive anointing from the deacon in my church this week in case. I pray and trust in God and give my LO up to His Providence. I will do what I can but feel helpless for him at this point and do not want to get banned for his sake.
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Thanks Maryanne.
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No better in Australia, this story is 5 years ago but things seem to be getting worse not improving. http://www.abc.net.au/lateline/locked-out/4704792
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Same in the UK . Dad lost 8 stone , dehydrated and I witnessed other residents food taken away after they refused the first mouthful. Took me over an hour to get a few mouthfuls down him, just needs patience and distraction like you would with a child. So sad
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