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My family member with dementia was at the time of placement reasonably ambulatory with cane or walker. Mentally engaged. Recognized family members and others routinely involved in her daily life (caregivers, neighbors, etc). She was moved to NH (3 weeks ago). I went to see her on a Friday, Tuesday went back to find her slumped in wheel chair, no longer walking, not engaged at all and did not appear to recognize or respond to me. She is and has been for years not able to articulate, so is non verbal so I cannot ask her about herself. I am concerned and frightened by the sudden change. My imagination and guilt for putting her there is running rampant. Is this sudden change a normal progression or could there be something more sinister to her decline?

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I think you should feel free to challenge the NH about this. I can't, of course, guess what might be going on with your relative, but I'll share an experience I had.

My great aunt, aged 96, in full possession of her mental faculties but physically too frail to live alone, was admitted "temporarily" to a nursing home. A few weeks later, she was not at all herself. Sleepy, not engaging when we visited her, no appetite, not much interest in her usual favourite drinks (Canada Dry ginger ale, e.g., had always been well-received before).

I tracked down the general practitioner who oversaw residents' medical care, and tentatively but in terms asked her whether my great aunt was being given any kind of sedation or similar to "help her settle in to the home's routine, perhaps," I think I said.

The GP was indignant. She would *never* countenance any such thing. She was appalled that I could even think it.

Well, I can't be sure and I never was sure, maybe auntie just perked up of her own accord and had been going through a rough patch for entirely different reasons; but following that conversation the next time we saw her and thereafter for two or more years she was back to normal.

So if I were you I would put the question to them. It will help if you are your family member's health proxy or at least have HIPAA authorisation, but you don't need either to express your concerns. Be as clear as you have been in your post about the Before and After picture, and ask if they can explain.
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anonymous1010889 Mar 2020
I’m having a similar experience with my father. He was admitted to the hospice facility to regulate his medications as he’s been experiencing progressive daily episodes of angina that have not responded to nitroglycerin. When he left the house on Friday afternoon he was alert, oriented, continent and ambulatory with a walker. Less than 48 hours later when I visited, he could not wake up. I would rouse him but he just passed back out. I asked the staff but didn’t get a straight answer. Actually, the CNA butted in to tell me that I was just in denial of dad’s decline and condition. The nurse just ignored my question. I reached out to the on-call who admitted that dad had been given significant amounts of morphine, Ativan and haldol IM to manage some agitation from earlier in the day. I’m trying to arrange to stay with him until he can return home. In the meantime, he has been assigned a sitter and different staff to attend to him.
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Whenever my LO who has dementia is hospitalized, after a minimal amount of time, he develops what staff calls "hospital delirium" you can transfer that to any environment that is not their own, NH delirium, rehab delirium, etc.... for the very reason stated in Momlanni's last paragraph: remove them from their familiar zone and down they go. My LO would go into hospital hall looking for "refrigerator to get a drink", "going to the porch, I am cold and want to sit in the sun" etc. In less than 24 Hrs they had to put him in restraints because you couldn't keep him from removing IV and catheter. Made visits difficult because he insisted that I'd put him in this place and he wanted to go home, wanted restraints off. It was critical that he receive the meds he needed through IV because his condition was acute. Those 5 days were a nightmare.

Even on returning home, it takes a few days to get back to their pre-hospitalization "normal" though never quite fully. I am FT caregiver, have been for 9 years, and dearly pray that I never am faced with the decision to have him in a nursing home.

I do recommend testing for UTI as well, as previously mentioned, as that definitely has a very negative impact overall. When my LO started talking nonsense I told doctor I thought he had a UTI though he'd never had one before. To which came the snot reply "are you in the medical field?" No I am not. "So do you have experience with this?" No I don't.... yet. "Well, he has dementia so....." I insisted that his urine be tested, and Dr. pushed back because it was tested on admission 48 hr. prior. I pushed back, demanded. Guess who called me that night with an apology and a much better attitude???? Caregivers know their LO. Yeah he has dementia and he can be cantankerous. But he has yet to talk nonsense albeit sometimes uses wrong word. But when he said he wanted me to take him to local police department and I enquired to reason... "so we could buy more room" huh, what?

Dementia and ALZ patients go through plateau periods, then step down. Sometimes the plateau is short lived, or longer than previous ones, that step down is barely perceptible, sometimes steep. Environment is key to both in many cases as are meds. All the best to you and please do not blame yourself. You have done the best you could, and can be pro-active in following some of suggestions posted here. God bless you.
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Daughters12345 Mar 2020
It is best to rule out illnesses. Nothing wrong with that. But if she does have UTI, then if it got severe and sepsis, the NH could be sued for negligence. Symptoms that are assumed dementia should be a crime. Should be criminal. I say that it is on purpose. Because I have witnessed this misdiagnosis!!!
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My first thought is dehydration, She is not familiar with her surrounds and how to access water. It is possible her walker was not near her when she wanted to get up and she just gave up. When my mom would be in rehab, she never had water or walkers within reach when I visited her. Neither when she was in bed or in a wheelchair. Can you hire an aide from outside the NH to spend a few hours with her daily. Making sure she is drinking enough and interacting. My mom lives at home, but when she had to go to inpatient rehab I always hired someone to spend 4/5 hrs with mom breakfast through lunch. Then another family member visited in the dinner/evening hours. If we were not there, no one assisted mom with her meals. Water was always in the room but out of reach.
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Yes, rapid change can happen even in one day. Do as posters have said and have everything checked out, UTI, etc. My mom changed in one night, from walking to wheelchair. Took her to doc at urgent care and they gave her chest xrays. She had pneumonia and they gave antibiotics. She was walking again after 2-3 days of antibiotics. Good luck!
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Why would you be thinking 'sinister'? Odd word to be using if you placed your loved one in a SNF that you personally chose and checked out yourself!!

She could easily have suffered a stroke and that's why she's no longer ambulatory and you're seeing such a decline. Not to mention, dementia can progress rather quickly, even if she didn't have a stroke, so that's something else to consider, but I'd be inclined to think stroke myself.

Good luck!
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Viudalady Mar 2020
She was placed in care by our hospital social services. Due to her chronic falls. Not my choice. Medicaid bed availability in our county next to non existent. Been trying to find Ltc for her for 4 years to no avail even as far away as 100 miles.
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I would wonder about the change too. I would talk to the DON and ask that the doctor see her. Could be dehydration. See if a new med has been introduced. Ask for labs to be done to rule out something physical. If she had a stroke, she should have been sent to the hospital. She is in LTC not on Hospice.
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Check to see if she has a UTI. My mother’s personality and mental state went haywire.
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fishkiller Mar 2020
That is exactly what happened to my mom.
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This is normal. Placement is very disorienting, especially in moderate to later stages of dementia. It sounds like this is true of your mom since she has been nonverbal for years. You can help by nonverbal interaction with her like a hand massage, or showing her enlarged pictures on an i-pad. She may respond to music or singing familiar songs to her, especially repetitive songs like "Row Your Boat. Some nonverbal people can still sing; it's a different part of the brain that is activated.

I would also suggest a geropsychiatrist. Or the doctor serving the facility could try a low-dose antidepressant. Depression is common in recently placed people and can look like a drastic decline in function. I'm sure you did everything possible before placing her and had no alternative. Home care is actually not safe in most cases of late stage dementia.
Dr. Gross
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Daughters12345 Mar 2020
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Sometimes when a person is put in a facility they will become depressed until they adjust .
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WizerOne Mar 2020
Sometimes they may never adjust.
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Have them do blood work and also urine test to check for UTI, Then get a list of meds and compare to what she took prior to going to facility. Very possible you have an infection going on or change in meds.
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