We've had my 94 yo mother home with us for 5 days from the memory care facility. (It got too expensive.) During the time she's been here I can count the hours I've slept. Unfortunately, I am a light sleeper and suffer from insomnia. I can't sleep in the daytime either. I can GET to sleep at night but, without medication, I can't STAY asleep. I can't TAKE any medication because she gets her "second wind" at bedtime and I need to be able to be up in seconds.

Today we hired a gal (an EMT) to stay with my mom 4 nights a week. Tonight is her first night. I told her she can go to sleep as long as she helps my mom if she needs it. I kept the baby monitor on just in case. I heard mom talking and walked in to find mother naked and urine on the floor. She had 2 clean diapers and 2 pads on just an hour before. The poor c/g must have awoken to her doing this and she was trying to get my mom to the bathroom. So much for sleeping tonight! (1:15 am now).

Mother took Seroquel 12.5mg. and Ativan 1 mg. 45 minutes before bed. We limit fluids after 6 pm. She is taking medicine for a UTI but it should be kicking in by now. Before we left the memory care facility, the nurse told me that she was doing this same behavior. We had explained many times to call the c/g to get her to the bathroom but in stage 6 Alzheimer's, she can't comprehend what to do.

I've thought of a bed alarm but all that will do is alert me and c/g that she's up.
Maybe giving nighttime meds earlier but then she'll be waking up too early in the morning. I thought of more daytime activity but her tolerance is just above bedridden.
Unfortunately, I think we've bit off more than we can chew. I'll be calling Medi-Cal (Medicaid) in the morning.

I don't see ever sleeping again at this point. Ya'll have any suggestions, short of hog-tying her, to keep her in bed? Hubby is great during the day but he sleeps as hard as a bear at night. As you can imagine, I'm at my wits end. Any suggestions will be more than welcome. The antidepressant is keeping me from crying (a good thing right now) but my neck is in knots (also arthritis), my back is aching from all the pulling and lifting and I just wonder why this has to go on. AAAhhhhhhh!

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Hi Madge,
Nope, we're no where near Mexico City, thank God. Didn't feel a thing. Poor folks in Mexico's southern states of Oaxaca and Chiapas. They got hit badly with fatalities. We were just there last year. So glad we got to see it unspoiled from the earthquakes.

There are certainly a LOT of folks to pray for recently (Texas, Mexico, Florida and the islands under them, etc.) Worries about North Korea's nuclear weapons and possible war. Kinda' makes you wonder if these aren't what the Bible describes as the "end times"?
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Yes, haldol is like an elephant tranquilizer

Are you too far north to have felt the big Mexico quake tonight?
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Thanks Madge, the demented elderly are a frail population. It's so sad that we have to chemically subdue our agitated seniors.
From the JAMA (Journal of American Medical Association) Network (these are the experts)
Article from May 2015
Antipsychotics, Other Psychotropics, and the Risk of Death in Patients With Dementia,
Number Needed to Harm.
"Antipsychotic medications are associated with increased mortality in older adults with dementia, yet their absolute effect on risk relative to no treatment or an alternative psychotropic is unclear.
Conclusions and Relevance; The absolute effect of antipsychotics on mortality in elderly patients with dementia may be higher than previously reported and increases with dose. There is an increased risk of cerebrovascular adverse events, and, in April 2005, the FDA9 issued a black box warning that the use of atypical antipsychotics leads to increased all-cause mortality when used for behavioral disturbances in patients with dementia. Prescribing a medication that increases mortality risk seems contrary to the tenet “first, do no harm,” yet for patients who pose a danger to themselves and others and are in 'profound' distress, use of such medications may still be appropriate."

These meds are not ONLY prescribed to patients with threat to self or others or 'profound' distress. They are also used to subdue a needy, talkative or overactive patient. This is the group I have problems with receiving multiple, continued doses.

I won't print the whole article but it says that the smallest dose possible and the fewest doses per day possible is the best practice to prevent health problems.
Haldol seems to have the worst rating and Seroquel has the best rating.
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Thanks Sue. I also am going off the input from 3 neurologists. All day Seroquel is a much better medicine for Alzheimer's patients than Ativan. I would rather go with experts than the internet.
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You won't like anything you read about antipsychotic meds - all have FDA black label warnings that they should not be used in elderly demented patients-
however there are no drugs to treat the oftentimes psychotic behaviors of dementia and that's why doctors play around with small dosages for off label use

My mom did not do well on seroquel and so we switched to risperdal

She generally sleeps ok but needed to get up a few times a night to pee and facility staff cannot accommodate so I hired overnight sitters after she had a bad fall in her memory care room

The onesies may help - some folks at mom's facility disrobe whether they have to use the bathroom or not

Others like mom's roommate just get up frequently during the night and walk around and my private caregiver spends time dealing with her too much

Even tonight I walked mom's neighbor up and down the hall three times and another neighbor hijacked the supply cart and went into another residents room - with only one caregiver on staff she couldn't chase everyone and about the same time mom's roomie had an accident and needed help

You might want to look into the OtC melatonin to help mom sleep

There are ways to arrange pillows to prop her legs up a bit to help keep her in place a little longer
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Just out of curiosity, why does S-I-L think Ativan is "nasty"?

It is the drug of choice for dying, agitated hospice patients also for Generalized Anxiety Disorder. It is shorter acting than other benzodiazepines.
Ativan (lorazepam) belongs to a group of drugs called benzodiazepines. Lorazepam affects chemicals in the brain that may be unbalanced in people with anxiety.
It is used to treat anxiety disorders.
You should not use Ativan if you have narrow-angle glaucoma or myasthenia gravis, or if you are allergic to Valium or a similar medicine. Lorazepam may be habit-forming and should be used only by the person it was prescribed for. Misuse of habit-forming medicine can cause addiction, overdose, or death. Ativan should never be shared with another person, especially someone who has a history of drug abuse or addiction. Keep the medication in a secure place where others cannot get to it. Do not drink alcohol while taking Ativan. Lorazepam can increase the effects of alcohol.The sedative effects of lorazepam may last longer in older adults. Accidental falls are common in elderly patients who take benzodiazepines. Use caution to avoid falling or accidental injury while you are taking Ativan.
Common Ativan side effects may include:
dizziness, drowsiness, weakness; slurred speech, lack of balance or coordination;
memory problems or feeling unsteady.

I take this medication at .5mg to 1 mg. for sleep and have had no adverse effects. Nor am I addicted to it. My mother has been on it since her early 80's. (She's 94 now.) I have not noticed any untoward effects but she does rest easier than without it. She takes 1 mg. at bedtime every night to stay asleep. I believe the side effects happen when you take it more often (taking 3-4/day) and possibly in higher milligram strength. I watch her for increased unsteadiness (that is getting worse as she advances into stage 7) and she never walks alone now. She was falling at the memory care facility and came home with 4 bruises on left cheek to ear, left rib cage, left hip and right knee. Of course they weren't showing when we picked her up, they took a couple of days to come to the surface. Which means she fell a day or two before we picked her up.
As difficulty as it has been to have her at home now, at least I know that she won't be unsupervised living with us.
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Seroquel (quetiapine) is an antipsychotic medicine. It works by changing the actions of chemicals in the brain.
Seroquel is used to treat schizophrenia in adults and children who are at least 13 years old. It is also used to treat bipolar disorder (manic depression) in adults and children who are at least 10 years old.

Seroquel is also used together with antidepressant medications to treat major depressive disorder in adults. Never take Seroquel in larger amounts, or for longer than recommended by your doctor. High doses or long-term use can cause a serious movement disorder that may not be reversible. Symptoms of this disorder include tremors or other uncontrollable muscle movements, ( Tardive dyskinesia is a side effect of antipsychotic medications. These drugs are used to treat schizophrenia and other mental health disorders. TD causes stiff, jerky movements of your face and body that you can't control. You might blink your eyes, stick out your tongue, or wave your arms without meaning to do so. Not everyone who takes an antipsychotic drug will get it. But if it happens, it’s sometimes permanent. So let your doctor know right away if you have movements you can't control. Your doctor may be able to lower the dose or switch you to a different drug to ease your symptoms.

*****Seroquel is not approved for use in psychotic conditions related to dementia.

Avoid getting up too fast from a sitting or lying position, or you may feel dizzy. Dizziness or severe drowsiness can cause falls, fractures, or other injuries.
Very common (10% or more): Discontinuation syndrome (Dizziness, vertigo or ataxia (problems with muscle coordination), Paresthesia (tingling or pricking of your skin), numbness, electric-shock-like sensations, Lethargy, headache, tremor, sweating or anorexia, Insomnia, nightmares or excessive dreaming, Nausea, vomiting or diarrhea,
Irritability, anxiety, agitation or low mood) (12.1%), and agitation (up to 20%.)
Common (1% to 10%): Anxiety, depression, irritability, hypersomnia, abnormal dreams, aggression, suicidal ideation and behavior.
Nervous system;
Very common (10% or more): Somnolence (up to 57%), dizziness (up to 18%), headache (21%)
Common (1% to 10%): Hypertonia, incoordination, tremor, speech disorder, ataxia, lethargy, paresthesia, extrapyramidal disorder, balance disorder, hypoesthesia, restless leg syndrome, hypersomnia, tremor.
Common (1% to 10%): Urinary tract infection.

Elderly patients with dementia-related psychosis (a severe mental disorder in which thought and emotions are so impaired that contact is lost with external reality), treated with antipsychotic drugs are at an increased risk of death. Seroquel is not approved for the treatment of patients with dementia-related psychosis [see Warnings and Precautions (5.1)].

Not offense to your son-in-law, I just am not a big fan of this drug for the demented elderly.
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My son in law is a doctor. While this is not his specialization, he keeps up on everything pertaining to Alzheimer's for us. He said that Ativan is a nasty drug and should never be given to the elderly, even though most facilities and hospice use it. Seroquel has actually been shown to be the best... Maybe not according to Google but it is according to the medical professionals journals. My mom takes 50 mg if Seroquel at night and almost always sleeps through the night. On the rare nights she is still up when I go to bed, we give her 25mg of trazadone. Occasionally nothing works and I just have to "sleep" in the recliner in her room.
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Thanks Freqflyer. Something went crazy when I posted this and it locked me out of the site. Had to contact the admin to reinstate me. (?) Still having issues about confirming my password but at least I can post.

We've had mom now for 1 week. Boy have I learned a lot!
Hubby came up with the idea of putting little Christmas bells on the end of her sheet attached with pinching paper clips. That alerts all of us when she's moving.
Medications that often work one way in adults, work the opposite in young children and the very old. I also stopped the Seroquel because, according to and Wikipedia, it's "contraindicated" in late stage Alzheimer's to manage anxiousness. It's actually used for schizophrenia and bipolar disorder. Didn't the gerontologist who prescribed it at the memory care facility know that? Anyone could look it up on the internet, for Heaven's sake! She was a lot less anxious last night (so taking it away helped) but it still took 2 hours for the Ativan (anti-anxiety pill) to kick in. I'll know to give it 2 hours before bedtime tonight.

Allen, do you mean "onesies" for adults? I'll go to Amazon when I'm through here to find them. Thanks.

JessieBelle, If it ever cools off here, I might have my right mind again and make that call to Medi-Cal. I just can't think in this heat and feel so drained. (We don't have air conditioning and it's 85* in the house right now.) I should make a list of the questions I need to ask. I'll do that tonight.

Caring2Love, I guess the caregiver was awake but was just very shy and didn't demand that mother keep her clothes on. She's a very sweet Mexican gal (we live in Tijuana) and doesn't speak any English (another problem). In the Mexican culture, you are never demanding of anyone older than you, it's disrespectful. You and I know that we would have stopped mother from disrobing in a second but it was her first night. I'm sure the poor thing was overwhelmed. Last night was her third night and she did great. I woke up when I heard her take her to the bathroom (I wouldn't let myself look at the clock or I'd stay awake) but I went back to sleep after they returned to her room. She studies on her computer at night.

Geewiz, I think that's what she was doing but can't be sure. Why the nakedness? Maybe just standing up caused the incontinence. Good suggestion about the sheet. I doubt if she could get out of that one.

Thanks one and all.
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Sue does Mom get up to relieve herself or does she also get up just to get up?? At my Mom's memory care, we ultimately took an extra sheet and tucked it in on one side of the bed and brought it over her and tucked it in on the other side too. They had the bed up against the wall and placed pillow on the opposite side of the bed to keep her in. It may be worth a try.
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Hiring the caregiver to relieve you at night was the right choice, however in that the person was permitted to sleep while they're there, then you're not truly going to get the relief you need.

Why not consider hiring a caregiver who you will expect to remain awake during your Mom's resting hours; to ensure that you also may rest? The caregiver could sit quietly reading a book or tablet to stay occupied, and when your mother wakes for toileting they would be able to respond immediately - reducing the likelihood of accidents.

As you already know, if you don't get your rest that will make it more difficult for you to provide good care for your Mother.
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My mother gets up often at night, but fortunately she doesn't cause any problem. Often she just sits on the side of her bed or gets up to go to the bathroom. I haven't been able to find a way to get her to sleep through the evening. I worry more about her falling if she has a stronger sleeping pill than I do about her waking up.

From what you describe, trying to arrange MediCal sounds like a very good idea. She may be to the point that she needs around-the-clock care from professionals who deal with these things. You have tried so hard and I know you are tired from the lack of sleep. It's not you or your mother, but just the disease progressing. Big hugs.
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I don't know if they make them for adults, but for years (until she was dry at night) I had ones my special needs daughter couldn't take off. I don't know if that would help the issue at all. I wish you the best.
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Sue, I am moving your post back to the front page to see if anyone can help you with your question.
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