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 uncontrollable screaming and psychiatric hospital 
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Joined: Thu Aug 26, 2010 7:11 pm
Posts: 31
Post uncontrollable screaming and psychiatric hospital
Hi,

I haven't been here in quite some time. My mom was diagnosed with LBD almost 2 years ago to the day. As her dementia progressed the hallucinations went away (she always saw animals, especially bears in the peach trees or dogs on roof tops) and her short term memory vanished. She had at least been able to form new memories. Oddly enough though, she never had any of the Parkinsonian symptoms. Late November we moved her to an assisted living facility. About two weeks ago this odd behavior began where she would let out a scream. It was totally random. I was with her most of Friday and no evidence of it. Suddenly this week it manifested into extreme episodes, both all through the night and during the day.

She says she can't stop it and it is making her miserable. The facility told me to take her in today to check for a UTI. Her doctor told me to go to a walk in clinic. While there the screaming started and it wouldn't stop. They put us in a private room and I still couldn't get the paperwork filled out. I called her doctor from there and he told me to take her to ER. The MD at the clinic took me aside and said the same thing, so off to Hoag we went. No UTI and blood work normal. The ALF won't take her back. A social worker arranged for her to be taken to an acute psychiatric hospital that has a specialty with geriatrics and dementias.

Oddly enough, her doctor was at ER seeing two of his other patients and he spoke very highly of a geriatric psychiatrist that works at the hospital where we took her. We were at ER for about 9 hours, but most of this time was waiting for the social worker to get an answer as to whether Newport Bay had a bed available tonight.

My mom who was once very much an extrovert with a powerful vocabulary became quieter and quieter and hasn't really been able to hold much of a conversation in quite some time. From what I can gather, it's almost like most of time there really isn't much going on in her head thought wise. She was able to tell me today that she felt confused and she wants more than anything for the uncontrollable screaming to stop. It's almost as if she is possessed during these episodes.

It looks like they are going to start her on seraquel tomorrow. I saw a lot of posts indicating that this has been a very useful medication. Has anyone else had their LO suddenly have uncontrollable screaming? Sometimes she bursts into uncontrollable laughter between the screams and then also does this weird thing with sticking out her tongue and wiggling her hands next to hears. She apologizes and says she doesn't want to do this, but just cannot help it and would very much like help in getting it to stop. Also, has anyone else had their LO in a psych hospital?

It's my understanding that the ALF won't take her back and I have to find another option. I think the psych hospital was given to us as more of a stop gap to buy me 4 or 5 days to find an alternative. Is it bad for me to leave her there for 4 or 5 days? She can't come back here. I did it for 1 1/2 years here and then 9 mos with her in an apt three blocks away set up for her and my polar niece. Here is not an option for my own mental health and marriage. I had already been scouting plan b's and may have an option at a facility that is ALF and has a memory ward. Funds are a huge issue and the plan b I had been looking at takes medi cal. We are 4 mos away from being eligible in terms of assets and this is with me paying her health insurance, meds, incontinence supplies and all other misc.

Any and all input would be greatly appreciated.

Warm regards,

Heather in Orange County, CA


Thu Jul 12, 2012 3:41 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: uncontrollable screaming and psychiatric hospital
Hi, Heather.

Mom wasn't in a psych ward at a hospital. but my sister who suffers from several kinds of depression, including PTSD, has. It's a horrible experience, visiting in a psych ward, isn't it? But every time her meds need adjustment, she is admitted. My poor sensitive sister in that cacophony! I hate it. I can't even imagine what it would have been like for my mom with LBD, Parkinsonism and Alzheimer's. Thank God I never had to find out (though she spent 14 months in the dementia unit of a nursing home).

Early on, Mom did have extended periods of anxiety, which was medicated with Lexapro. She didn't scream. She cried uncontrollably and couldn't stop or figure out what was wrong. As I imagine screaming does to your mom, the crying frightened her particularly because she couldn't figure out why it happened.

Was it your family doctor who sent you to the walk-in clinic and then to the ER? The suggestion of a geriatric psychiatrist consult is a good one, but if that psychiatrist can't recite chapter and verse on LBD, bring in a neurologist or neuro-psychiatrist as well. The medical community just isn't well enough informed for us to be sure that even a psychiatrist is familiar enough with LBD to treat it. Also, have a frank talk with the original family doctor about whether it is time for your mom to start seeing a geriatric specialist (medical as well as psych). I doubt that a geriatric specialist would have sent you to the walk-in clinic and may have hesitated to suggest the ER. These docs are usually more sensitive to the dementia patient and the stress that these two medical situations create for them. And the stress probably affected your mom, too.

We also never had Mom in an ALF, but did check into a few. (Mom went from home to the hospital (diabetes) to the nursing home.) My understanding is that the ALF is kind of an interim solution in the dementia (or other disability) journey and that when the behavior of one resident becomes a problem and stressful to the other residents, that resident is asked to leave. The group home or the dementia unit is the next step. Does the ALF have a dementia unit? I know that it is very painful to have to move your parent from one level to the next. But there is the benefit of having staff helping your mom who know how to help. Each level of care brings with it the particular skills, talents and temperament to provide best for residents at that level. Don't judge all of these facilities by the stereotype. Some can actually be very nice. Advance planning helps. Start visiting a few now and checking ratings through medicare.gov. Give yourself time to make a careful choice. Also, though you don't sound enthused by the hospital social worker, use him/her to get your mom into the next facility. The hospital social worker, when Mom's diabetes took her to the hospital, got the facility we wanted for Mom to move her up on the waiting list and they gave her their first opening. Depending upon the situation, a social worker can work miracles. It's a relationship worth cultivating.

I hope some of this helps. Right now, with your mom in a psych ward, I imagine it is hard to think. The decision to move to the next level of care is a tough one and, yes, it tears you apart. It took several months before I saw that we had made the right choice by getting Mom into a good dementia unit.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Jul 12, 2012 8:09 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: uncontrollable screaming and psychiatric hospital
Heather,
Have you asked the current ALF is her symthoms are cleared up with medication wil they consider taking her back, has mom been checked for some sort of acute pain that she can't describe?
Gosh this sounds like a nightmare and I hope you are able to find another suitable placement. I hope the Seroquel helps!

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Irene Selak


Thu Jul 12, 2012 10:37 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: uncontrollable screaming and psychiatric hospital
Unfortunately, it has been our experience that, once the facility has refused to take them back, they will not consider it. It appears to be a policy/liability issue. With my husband, though, and friends' LOs, it was related to combative or antisocial behaviors. Maybe screaming is different.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jul 12, 2012 11:05 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: uncontrollable screaming and psychiatric hospital
That's so sad, what are people supposed to do ?

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Irene Selak


Thu Jul 12, 2012 1:40 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: uncontrollable screaming and psychiatric hospital
The hospital cannot release them unless placement is found. I found Derek another facility but the care coordinator should be able to help, too.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jul 12, 2012 2:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: uncontrollable screaming and psychiatric hospital
All facilities are not the same, so you may be able to find a more suitable place. In my dad's case, he was already accepted into an ALF when he was mobile and could perform most ADLs. By the time there was a room available he had overnight become 100% dependent on people for everything, yet they let him move in as an ALF resident, not a SNF resident (which saved him about $1,000 a month).
As his cognition decreased there was talk of him being moved to the memory unit but since he was cognitively functioning at a much higher level than the BEST of the folks in the memory unit, they let him stay in his ALF room. Several nurses fought to keep him in his room during his last months despite the fact that he was a 2-3 person assist, he often cried "help" and various other things even in the middle of the night, etc and was becoming frequently combative. We were extremely lucky that they were so accomodating to him and let him keep living in the ALF and not going to the memory care unit. Of course as his care needs increased so did the fee for being there, and he also had the advantage of hospice nurses and aides coming in to help.
So, not all places are grim and have poor service, and we did have our share of things to straighten out, but bottom line is there are places that are very good to our LOs and their families. I hope you are able to find a place where things work out better and that meds can control the outbursts. Big hug, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jul 17, 2012 11:27 am
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Joined: Thu Aug 26, 2010 7:11 pm
Posts: 31
Post Re: uncontrollable screaming and psychiatric hospital
Thanks for sharing Lynn. The ALV my mom had been at does not have a memory unit and they are refusing to take her back, which is actually good for us. Legally they can get away with this b/c they can claim they didn't know my mom had dementia. Their marketing person told me to have the doctor say she had cognitive impairment. They jacked up our agreed price within 6 weeks, so I was running out of money faster than expected. I have been trying to kick the nursing home that takes medi cal can as far down the road as possible.

I can place her in a nursing home memory unit, but I feel that this would be worse for my mom as she is not as far gone as most of them. I think this would cause her to decline faster. So the social worker is contacting two very local SNF's who do custodial, but don't have memory care to see if one of them can take her until she is at the point where it must be memory care. One of them is the one I selected for her post fall rehab 3 years ago. The fact that they are so near will make it possible for me to be there close to every day. While I think she won't like the SNF as much as the ALF, I think seeing me more frequently will actually benefit her more. The ALF was far enough that I could only go once a week, sometimes twice when he had a doctors appt, but it was time off work.

If the SNF close by is an option, then this is actually a blessing in disguise. If I was going to have to move her strictly b/c of money, I think I would have had fewer options and those options would be very undesirable. Crossing my fingers here.

Heather in Orange County, mom 85 dx LBD 07/10


Tue Jul 17, 2012 1:52 pm
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