How do I help my psychotic, delusional elderly mother?
January 2, 2010 1:16 PM Subscribe
I don't know how to help my mother, who is relatively recently diagnosed with dementia, but showing psychotic and delusional symptoms. Short-term skilled nursing care wants to release her to board-and-care, and I know this won't work. How can I (and should I) get my mom committed to a psych ward?
i'll try to keep this as brief as possible, but it's a long story. I know you guys are not my mom's doctor--I'm just looking for people who may have been in similar situations and what you've done. (I'm in Southern California.)
Prior to the end of October, my 72yo mom had advanced Parkinson's, lived in an assisted living facility and her mind was 97% OK. She was taking Paxil for depression, Serax for anxiety, Vicodin for bowel/stomach pain, and the various drugs for Parkinson's and high blood pressure. Her memory was extremely sharp (she kicked ass at trivia) and the caregivers thought she was nice. She did have some slight hallucinations in the mornings and at night (thinking shadows in her room were people), but they faded quickly, they didn't frighten her, and were caused by the Parkinson's meds.
On November 1, I was called to her home. She had ripped apart her room three times, looking for objects. She couldn't name them and told me she knew they weren't there, but had to find them. She was acting very manic and kept crawling around, hurting herself, screaming in pain, but not letting me help her lay down. (She had some pain from a fall a few weeks prior.)* I called an ambulance.
She was in the hospital a week, and has been in skilled nursing ever since then. Here's a breakdown of symptoms (weeks are approximate):
* Week 1: She tried to crawl out of bed for about 48 hours straight, no sleep, no food. (She was trying to crawl "home," which she said was heaven.) They tied her down so she wouldn't hurt herself. Then she screamed for almost as long, straight. She wanted us to unplug everything in the room, turn off every light, no matter how tiny. She was delusional and paranoid about what happened at home the previous week. They took her off all medications b/c they thought it might be medicine-induced psychosis. The doctor told me they really had no idea what happened to her. All scans/tests didn't show sign of a stroke.
* Week 2: She calmed down, but began clearing her throat obsessively because she thought if something was in it (phlegm? food?), she would begin screaming again. She was terrified of screaming again. She was moved (I actually drove her) to skilled nursing to get physical therapy because she had weakened in the hospital.
* Weeks 2-4: She slowly stopped eating, then talking and taking medication. I realized they took her off Paxil, so she was probably massively depressed. The doctor at skilled nursing (Dr. S) tried to put her back on it, but she refused. She gave her Zyprexa because it dissolved. She eventually got a feeding tube and we even talked about whether I'd approve a stomach tube or let her die instead.
* Weeks 5-7: The medicine kicked in. She slowly came out of it and began to show normal signs of dementia--she was friendly, wanted to talk, but wouldn't know certain people were dead and said funny things (told her sister she was in hospital because she had scoliosis) and refused to wear clothing. She also refused (nearly violently) to do physical therapy because she was afraid she'd fall.
* Last two weeks: Began trying to crawl out of bed again (and made it a few times) and started throwing things--anything she can touch. She began trying to eat her own feces. She told me she hears voices that tell her to do things. She calls everyone VERY bad things (she barely cussed before), and has gotten slightly combative (scratching a caregiver, trying to bite).
She was supposed to be released a week ago--the day after Christmas. I have had complete HELL finding her a place. The discharge plan was based on when she was "good" (weeks 5-7), so my initial plan was to take her back to assisted living for a few days and then to a board-and-care. By the time the actual discharge came around, she was acting horribly--the voices, the feces. I freaked out, told them I was going to take her to the emergency room as soon as she was discharged because I couldn't handle her and had nowhere to take her. It's not like I could find a facility when everyone was on vacation. They agreed to keep her until Monday.
Monday, Dr. S got approval to keep her one more week w/ a medication change. She's now on Zyprexa, a small dose of Paxil, and Depracote. I found another board-and-care that will take her despite behaviors--but they don't know about the feces thing or her being combative. They just reopened the house after remodeling it, and it's empty but for the caregivers. The peace-and-quiet could calm her down, but I don't know for sure.
Every other dementia facility I've talked to won't take anyone who's combative. (Another long story: She has Medi-Cal and Kaiser. Non-Kaiser-contracted facilities won't take her. All the K-contracted places in my county have no beds. I found two about 45 minutes away that do, but there are issues I need to sort out with Medi-Cal, plus her behavior has gotten too extreme.)
I'm afraid if she gets out Monday and I take her to board-and-care, they'll ask me to come get her within hours--the first time she tries to eat her feces. (She does it at least once a day.)
The skilled nursing place where she's at won't even leave her alone. They've contracted out so she has a sitter 24 hours each day. But they try to tell me a board-and-care will be just fine? How is that possible if they can barely handle her? I think her hands should be bound in mittens so she can't get at her feces or scratch anyone, and skilled nursing won't even do that. I know a board-and-care can't legally do that.
She's terrified, and I'm terrified. I think she should be in a mental facility. But Dr. S and the Kaiser rep tell me it's not really possible. She's had a psych eval (a psychiatrist in once a week to see her). Dr. S said she tried to get her committed for suicide attempt when she wasn't eating, but they said they wouldn't do it.
So: What would you do? Where the hell do demented seniors with psychosis and delusions and combative behavior go, if not to a psych ward? And how do I get her in one? I can only pray the medication will eventually kick in (it's been 5 days), but in the meantime, I'm at a loss.
*The fall: She fell and fractured her pelvis, but we didn't know it. She kept walking (with her walker) but the pain got progressively worse. She got an xray where she said it hurt (left hip) but there was nothing there. An unrelated CAT scan later showed the pelvic fracture. It healed up after a few weeks in the hospital (i.e., she stopped screaming in pain every time they moved her in bed). My sister and I wonder if the undiagnosed pain may have played a role in her break-down--her thinking no one believed her and that the pain wouldn't stop.
i'll try to keep this as brief as possible, but it's a long story. I know you guys are not my mom's doctor--I'm just looking for people who may have been in similar situations and what you've done. (I'm in Southern California.)
Prior to the end of October, my 72yo mom had advanced Parkinson's, lived in an assisted living facility and her mind was 97% OK. She was taking Paxil for depression, Serax for anxiety, Vicodin for bowel/stomach pain, and the various drugs for Parkinson's and high blood pressure. Her memory was extremely sharp (she kicked ass at trivia) and the caregivers thought she was nice. She did have some slight hallucinations in the mornings and at night (thinking shadows in her room were people), but they faded quickly, they didn't frighten her, and were caused by the Parkinson's meds.
On November 1, I was called to her home. She had ripped apart her room three times, looking for objects. She couldn't name them and told me she knew they weren't there, but had to find them. She was acting very manic and kept crawling around, hurting herself, screaming in pain, but not letting me help her lay down. (She had some pain from a fall a few weeks prior.)* I called an ambulance.
She was in the hospital a week, and has been in skilled nursing ever since then. Here's a breakdown of symptoms (weeks are approximate):
* Week 1: She tried to crawl out of bed for about 48 hours straight, no sleep, no food. (She was trying to crawl "home," which she said was heaven.) They tied her down so she wouldn't hurt herself. Then she screamed for almost as long, straight. She wanted us to unplug everything in the room, turn off every light, no matter how tiny. She was delusional and paranoid about what happened at home the previous week. They took her off all medications b/c they thought it might be medicine-induced psychosis. The doctor told me they really had no idea what happened to her. All scans/tests didn't show sign of a stroke.
* Week 2: She calmed down, but began clearing her throat obsessively because she thought if something was in it (phlegm? food?), she would begin screaming again. She was terrified of screaming again. She was moved (I actually drove her) to skilled nursing to get physical therapy because she had weakened in the hospital.
* Weeks 2-4: She slowly stopped eating, then talking and taking medication. I realized they took her off Paxil, so she was probably massively depressed. The doctor at skilled nursing (Dr. S) tried to put her back on it, but she refused. She gave her Zyprexa because it dissolved. She eventually got a feeding tube and we even talked about whether I'd approve a stomach tube or let her die instead.
* Weeks 5-7: The medicine kicked in. She slowly came out of it and began to show normal signs of dementia--she was friendly, wanted to talk, but wouldn't know certain people were dead and said funny things (told her sister she was in hospital because she had scoliosis) and refused to wear clothing. She also refused (nearly violently) to do physical therapy because she was afraid she'd fall.
* Last two weeks: Began trying to crawl out of bed again (and made it a few times) and started throwing things--anything she can touch. She began trying to eat her own feces. She told me she hears voices that tell her to do things. She calls everyone VERY bad things (she barely cussed before), and has gotten slightly combative (scratching a caregiver, trying to bite).
She was supposed to be released a week ago--the day after Christmas. I have had complete HELL finding her a place. The discharge plan was based on when she was "good" (weeks 5-7), so my initial plan was to take her back to assisted living for a few days and then to a board-and-care. By the time the actual discharge came around, she was acting horribly--the voices, the feces. I freaked out, told them I was going to take her to the emergency room as soon as she was discharged because I couldn't handle her and had nowhere to take her. It's not like I could find a facility when everyone was on vacation. They agreed to keep her until Monday.
Monday, Dr. S got approval to keep her one more week w/ a medication change. She's now on Zyprexa, a small dose of Paxil, and Depracote. I found another board-and-care that will take her despite behaviors--but they don't know about the feces thing or her being combative. They just reopened the house after remodeling it, and it's empty but for the caregivers. The peace-and-quiet could calm her down, but I don't know for sure.
Every other dementia facility I've talked to won't take anyone who's combative. (Another long story: She has Medi-Cal and Kaiser. Non-Kaiser-contracted facilities won't take her. All the K-contracted places in my county have no beds. I found two about 45 minutes away that do, but there are issues I need to sort out with Medi-Cal, plus her behavior has gotten too extreme.)
I'm afraid if she gets out Monday and I take her to board-and-care, they'll ask me to come get her within hours--the first time she tries to eat her feces. (She does it at least once a day.)
The skilled nursing place where she's at won't even leave her alone. They've contracted out so she has a sitter 24 hours each day. But they try to tell me a board-and-care will be just fine? How is that possible if they can barely handle her? I think her hands should be bound in mittens so she can't get at her feces or scratch anyone, and skilled nursing won't even do that. I know a board-and-care can't legally do that.
She's terrified, and I'm terrified. I think she should be in a mental facility. But Dr. S and the Kaiser rep tell me it's not really possible. She's had a psych eval (a psychiatrist in once a week to see her). Dr. S said she tried to get her committed for suicide attempt when she wasn't eating, but they said they wouldn't do it.
So: What would you do? Where the hell do demented seniors with psychosis and delusions and combative behavior go, if not to a psych ward? And how do I get her in one? I can only pray the medication will eventually kick in (it's been 5 days), but in the meantime, I'm at a loss.
*The fall: She fell and fractured her pelvis, but we didn't know it. She kept walking (with her walker) but the pain got progressively worse. She got an xray where she said it hurt (left hip) but there was nothing there. An unrelated CAT scan later showed the pelvic fracture. It healed up after a few weeks in the hospital (i.e., she stopped screaming in pain every time they moved her in bed). My sister and I wonder if the undiagnosed pain may have played a role in her break-down--her thinking no one believed her and that the pain wouldn't stop.
OK, she should have gotten assigned some kind of social worker assigned to her after all of these travails, by this point. If not, you can likely get one through Medi-Cal or Kaiser (probably would end up being covered by a combination of the two, if it's covered)--you can inquire about it at any of the facilities she's been in, too, and they can help you get the process started. The social worker's job is essentially to know what type of facility your mom can go into in the area, and how you can get her in (all this stuff you're likely struggling to manage on your own right now), and advocate for your mom to get a higher level of care.
My understanding is that what you'd need to get her into a psychiatric hospital is an evaluation by a psychiatrist who says it's necessary (possibly a physician too, from the sound of things), and it sounds like it is a distinct possibility for her situation that she'd be accepted. The only snag would be finding one with an available bed, which the social worker can help with.
Gosh, this sounds utterly horrible. Wishing you strength and smoother sailing.
posted by so_gracefully at 3:19 PM on January 2, 2010
My understanding is that what you'd need to get her into a psychiatric hospital is an evaluation by a psychiatrist who says it's necessary (possibly a physician too, from the sound of things), and it sounds like it is a distinct possibility for her situation that she'd be accepted. The only snag would be finding one with an available bed, which the social worker can help with.
Gosh, this sounds utterly horrible. Wishing you strength and smoother sailing.
posted by so_gracefully at 3:19 PM on January 2, 2010
I'm so sorry that you and your mum have had to go through this.
I'm speaking from a Canadian perspective so take what I say with a grain of salt. It sounds like your mother has psychotic symptoms in the context of dementia and not a primary psychotic disorder. Patients like this in Toronto (where I work) are generally treated from the internal medicine/geriatrics perspective (with psychiatry input). I have found that placing patients with dementia is much more difficult if they have been admitted to a psych ward at some point in their treatment. The label sticks and doesn't come unstuck. Long term care facilities are even more wary of accepting them. We try our best to keep patients in similar situations out of the psych ward for this reason. Also, if your mum has other complicated medical issues the psychiatric ward is not the best place for her as she may require a different type of nursing care from what they are used to. Just something to keep in mind.
Also, I assume that she did have her head scanned after the fall as Madamina suggested above.
I really hope that you find a solution (meds, nursing, long-term care) that works for your mum and your family. I wish you much strength in this difficult time.
posted by madokachan at 3:44 PM on January 2, 2010
I'm speaking from a Canadian perspective so take what I say with a grain of salt. It sounds like your mother has psychotic symptoms in the context of dementia and not a primary psychotic disorder. Patients like this in Toronto (where I work) are generally treated from the internal medicine/geriatrics perspective (with psychiatry input). I have found that placing patients with dementia is much more difficult if they have been admitted to a psych ward at some point in their treatment. The label sticks and doesn't come unstuck. Long term care facilities are even more wary of accepting them. We try our best to keep patients in similar situations out of the psych ward for this reason. Also, if your mum has other complicated medical issues the psychiatric ward is not the best place for her as she may require a different type of nursing care from what they are used to. Just something to keep in mind.
Also, I assume that she did have her head scanned after the fall as Madamina suggested above.
I really hope that you find a solution (meds, nursing, long-term care) that works for your mum and your family. I wish you much strength in this difficult time.
posted by madokachan at 3:44 PM on January 2, 2010
Dr. S said she tried to get her committed for suicide attempt when she wasn't eating, but they said they wouldn't do it.
An involuntary commitment to a psychiatric facility takes place when a take into custody order is issued for the person in question, which can be issued by a judge, but also through mental health delegates at the county behavioral health department. In this case, the doctor contacted the behavioral health department asking for a preapproved involutntary commitment order that is a take into custody order that would then be executed by law enforcement officials. These kinds of commitments where there's no imminent threat of death to either the person in question or someone else are called failure to care commitments and they are extremely hard to get approved. They need to be so to prevent family members, doctors, law enforcement, etc. from abusing the power of commitmment. You have to make a compelling case in these situations that the person is DEFINITELY going to die because of their inability to care for themselves in a short time frame. I guess in this case behavioral health wasn't buying it.
So you should be aware in advance that if you go this route your mother will be going to the hospital in the back of a police wagon, an involuntary commitment is a law enforcement action and the results can vary greatly depending on whether or not the responding officer has received mental health training or not. They can be disasterous experiences that result in harm to the person being committed, and almost always wind up destroying the relationship between those doing the committing and the person being committed.
I'm not very familiar with LA but if this was in Philly I would be on the horn to the county's department for the aging if you aren't already. There are special concerns for the mentally ill elderly and there are separate resources you can access to help them that might not be available to others. They are the ones who experienced in working with this specific population and their expertise can help guide you through the hurdles you're encountering in trying to access services for her.
posted by The Straightener at 4:29 PM on January 2, 2010
An involuntary commitment to a psychiatric facility takes place when a take into custody order is issued for the person in question, which can be issued by a judge, but also through mental health delegates at the county behavioral health department. In this case, the doctor contacted the behavioral health department asking for a preapproved involutntary commitment order that is a take into custody order that would then be executed by law enforcement officials. These kinds of commitments where there's no imminent threat of death to either the person in question or someone else are called failure to care commitments and they are extremely hard to get approved. They need to be so to prevent family members, doctors, law enforcement, etc. from abusing the power of commitmment. You have to make a compelling case in these situations that the person is DEFINITELY going to die because of their inability to care for themselves in a short time frame. I guess in this case behavioral health wasn't buying it.
So you should be aware in advance that if you go this route your mother will be going to the hospital in the back of a police wagon, an involuntary commitment is a law enforcement action and the results can vary greatly depending on whether or not the responding officer has received mental health training or not. They can be disasterous experiences that result in harm to the person being committed, and almost always wind up destroying the relationship between those doing the committing and the person being committed.
I'm not very familiar with LA but if this was in Philly I would be on the horn to the county's department for the aging if you aren't already. There are special concerns for the mentally ill elderly and there are separate resources you can access to help them that might not be available to others. They are the ones who experienced in working with this specific population and their expertise can help guide you through the hurdles you're encountering in trying to access services for her.
posted by The Straightener at 4:29 PM on January 2, 2010
« Older What happens when you call a Craigslist hooker? | Where can I download the version of Xandros used... Newer »
This thread is closed to new comments.
I'm so, so sorry that you're going through this. You're doing the best you can in a very difficult situation, and I wish you strength.
posted by Madamina at 1:22 PM on January 2, 2010