I am going to have to make a heart breaking decision soon regarding my mother’s care.

Thanks for the advice on the Seoquel. She takes 3 pills a day now. Before then she was very ugly. When she goes into the hospital they don't give it like the doctor has written for they cut back on it and then she starts trying to hit the nurses and saying bad things to them and once they up it she is very nice to them. Its like what do you do.

It's spelled Seroquel (handy in case you want to google about it)

Wow, Seroquel was fine at first, then it turned on Mom. Same with Ativan, which I intially called the "gratitude" pill. Imagine suddenly hearing "thank you" directed to ME instead of to the hot fudge sundae that somehow appeared before her.

Here is what happened to Mom on Seroquel after a month or so. The instinct when she started to go weird on me was that the Rx was not powerful enough to stem the deterioration of Mom's brain. Eventually she'd (as the doctor pantomimed) slide down the rocky slippery slope into madness and then death. Well, it was a vivid image.

First, (before Seroquel) mom's upsets, fainting, and "I'm dying" spells were prompted by painful nausea or gas, and in the end after five days of hospitalization, was Dx'd as stomach acid, probably acid reflex. Which felt like a heart attack, seems to block your breathing and fill your eyeballs with weird sensations. Been there, but took a Tums for myself. Mom doesn't know what it was. So she acted out, and in the hospital, was combative as they prodded and poked WHILE she was in pain. So they were more than happy to Rx for the combativeness. Seroquel. Prilosec stopped the stomach pains almost immediately, so in retrospect, she would not have been combative probably.

These are the side effects I noticed, which i would not have looked up if there had not been frequent ads for the drug on tv with the loud warning that this was specifically NOT for elderly dementia patients. It is for severely mentally ill, those with bipolar disorder, etc. NOT FOR DEMENTIA PATIENTS.

Watch for these side effects: Muscle cramps and body stiffening. Mom stiffened like a board in a magician's show and slid off the chair like a 2x4. Stiff facial muscles, working jaw around, eyes wincing. Sticking out tongue to stretch it, like a gargoyle. "Seroquel Anger" with impatience, snappy demanding personality, "quick quick." Choking and gagging. Ok, mom is really going over the edge. Starkraving mad!

Wonder if I should up the dose of Seroquel, then?? YIKES. Read the user forums. It is very possible that the bad behavior and delusions will actually intensify after awhile. Suicidal thoughts. I didn't check enough to know how addictive it is.

So we got her on to Ativan, which was much gentler. From Seroquel Anger to "thanks yous.' I like that much better. I kept her on very very low dose, sometimes waiting until she had an episode. But at this point my approach was to nip the anxiety in the bud so the anxious thoughts didn't blossom into a trip to the ER in a straight jacket.

She's been on it since end of January, and recently seemed more and more dopey sedated rather than just mellowed out. More bent over, weaker standing. Is it Old Age, Alzheimer's...or the Ativan itself?

Before Mother's day she started to have problems with BM, then seemed more a PEEING thing. Hmmm. UTI? Nope. Doctor said perhaps distended bladder, which in mom's case meant "think she'll tolerate a catheter, and can you manage it?" Are you kidding?

Finally I could not stand Mom's agony any more. I myself could not stand not being able to help her, to see her screaming, etc. Knowing it meant probable nursing home, I called 911 and she went to ER. I threw a screaming and wailing fit until they sedated her for procedures. With ATIVAN IV. They dx'd UTI this time, and Cipro.

Mom seemed to feel better. Even though ti was a mis diagnosis, it gave me a few days grace to find the probably culprit: Urine retention problems were common with this drug on her elderly patients, shared my Rn nurse, who worked in a geriatric psyche unit. No foolin!

Again, every time she had a pain crisis, I wanted to slip her a bit of Ativan. I rarely did this, but that was my instinct. So four days or so off Ativan, and very few urine problems. Now Mom's crazy combativeness is gone, and a pain is just a pain instead of "I'm DEAD" drama show. She's not fainting every time her dentures come loose. So now we are cold turkey on anti-psychotic drugs, cept for Zoloft. I can say that "my mother is back," not the memories, but the responsiveness.

Don't just read the preprinted side effects papers, go online and read the user forums. There are few mentions by dementia patients or caregivers, obviously, but active users who can still use the internet and know about the forum. They tend to be negative reactions, of course.

good luck with your Mom, and watch for those stiffness and urine retention side effects.

I have been where you are and still am a little. My mother suffers from dimentia and when she started seeing thing like monkeys in the garage ,water coming out of the walls,bugs crawling out of the ceiling,seeing and talking to people, etc. I talked with her doctor and he put her on Seroquil which has helps so much. Nomore monkeys but she sometimes still sees her parents and hides stuff but no biggy.

putting her in a nursing home is the right thing to do because she was talking to people who wasn't there and think that people is stealing her money..incoherent. so don't feel bad. try to have a good time with her every time that you visit her. promise her favorite food/desert when you visit her with the condition if you stop blaming you for having her on the E.R. remind to her that was only for her own well being.

Alzcaregiver, I would like to read your blog. If you don't mind, could you send me a link to it? 4 years ago my mom had to be sent to the psych ward. Brother found her in her house (she lives alone) very incoherant. Called me and called 911. Turns out she was severly dehydrated but she was so uncooperative at the hospital she spent 5 days being evaluated. She hates doctors, but now does see a psychartist 4 times a year.

Deliah, did they do a 51/50 on your mother? If so, if she is stablized (with or without Rx) they may let her "out." amazing how bipolar manic patients will turn very sane once they are hauled in, then in 3 days they are sprung loose having promised to say on their meds.

Perhaps temporarily, you can hire a nurse 24/7 and see if your mom stabilizes with some anti anxiety drugs. Or even stabilizes in a calmer nursing home situation. I've given up hope many times, and then there is a miracle or a little pill or curing of a painful UTI, and things improve again.

AlzCaregiver, if not UTI, then what? Your poor mom! Good thing she has you to advocate for her, got sedated, and got to go back home. Now what?

What do you have for an alternative plan for yourself, should you lose your mom to a nursing home, etc.? Any ideas for what you will do?

Your description of the scene of her screaming to let her out and them drugging her...I can't imagine how one can have an accurate assessment while being incarcerated in a psyche ward against your will. That would make a sane person go whacky and combative. There was the level of paranoid your mother experienced in her own home, and now there is this assault on her freedom and her entire life. What a predicament. Wonder how the doctors DO that, exactly? How do they separate the amped up combative behavior of being imprisoned against her will from the initial level of mental disturbance, which might have been treated with a medication.

Like when my mom was thrashing in the hospital in agony, protesting things being stuck into her, their solution was to call for people to hold her down and to kick me out of the room. So now she's a "problem case," and maybe her pain is all in her head. too much to consider.

As for "getting out of the Psych ward," they control that, and will have to "stablize" her with meds for it to happen. It happened that way with my dad. He is late stage Alz. now, but had to be incarcerated, due to his harmful behaviors. Sad when it comes to this... I am praying that things work out as well for you, as they did for my dad. If she has no assets, she can qualify for Medicaid. If she does, they can be spent down to qualify her. No way should she be on her own again, and I doubt they would allow it, even with stablizing meds. She brought that on herself when she called 911, and they had to take charge. Sad, I know. It is heart wrenching for a daughter, making decisions we never imagined we would. She may need a legal guardian, if she won't allow you to have POA. That is the worst case scenario. I doubt your mom has other options in this case... Praying for you as her daughter. From personal experience, I know you'll need all the support you can get. Sorry, honey. Hugs for both you and your mom.

I had a similar searing episode a few days ago, which I write about on my blog whendoesthegladstart
Mom was having urinary pain, and we'd already ruled out UTI. I always hope it is a uti. It could have been bladder distention, the doctor said. So finally there was a pain episode and I kept checking with mom about calling 911, Gave her some time periods, like a countdown. Making that call meant 1) torturous invasive procedures which Mom cannot tolerate; 2) finding bad bladder problems which might be beyond surgery at her age; 3) possible immediate placement in a nursing home (with impending avalanche of me being homeless, cats being given away.

So I really threw a wailing fit down at the ER when Mom was screaming in agony. I fought tooth and nail to have her sedated, and eventually she was. With all this, they said it was a UTI after all, and IV'd her Cipro. She started feeling better right away,b ut was a looney tunes from sedation. I took her home and cancelled the other disasters for the time being.

Yesterday, I get an email alert to check lab results online...and it shows she does NOT have a uti after all. My niece is doing energy healing on her, and could be the CIPRO pills (and my explanations of what it does) is having a healing effect. It's amazing I'm even standing, but like those bozo bunch bag clowns, I pop back up again, dukes up ready for the next round.

You had no choice once she call 911 and the police got involved next it would have benn APS and believe me you do not want that-she can not be left alone and I do not think she would be able to live in assisted living some of them check the people once a day. She will qualify for medicaide as long as she spends down any assests above what a person is allowed to have and since she did not plan ahead like having a POA when she could have and left everything up to you-you now must do what you believe is right-I am sure it was explained to her that she needed to make plans ann since she did not she really is giving you permission to do what is best for her and she will be angery for a while.

Anne123, you made me feel better too. My Mom is often SO ANGRY at me for "bossing her around" and "running her life." These decisions never come easily and most of us wait until the we MUST do something to keep our parents safe. My Mom vehemently refused in home care and "chose" assisted living.

This is the hardest thing I have ever had to deal with - an I know that is a fortunate thing. Thanks for your post - it helps me too.

They are starting her on a small dose of zyprexa to remove the delusional thoughts. They aren't sure yet if the delusions are actually part of the dementia or a separate entity. I wish I could have her live in her home (she rents her apartment). However, her resources would keep that going for a very short time and then she would have to go to a nursing home. I don't think that she would qualify for Medicaid though. she never would go for power of attorney or even health proxy as she was (still is) a very controlling person. She never wanted to give up any part of her control, and ignored the possiblity that someday she may be in this situation. (she always lived in the moment), Hoping the attorney can give clarity to the financial situation and then we can figure out how much homecare she can actually get. I think shell need at least 12 hours to be safe. Someone needs to make sure she takes her meds, and then maybe she will not have the delusions. Without the delusion, I think she may function well with home care. For how long, I don't know as this may be a slippery slope. Going to have a glass of wine and hopefully fall asleep.work tomorrow. Love to all

God Bless you its so hard I hope that someone will care for me that way if i get to live to be that age. I don't have any children. She will come around , she knows deep inside you love her very much she also knows that no matter how bad she treats you you will be there. HOPEFULLY she will get on some good medicine that will relive some of her symtoms at least for awhile.

Hey DelilahAnn,

any way you can have a live in at her house? She'd be able to age in place and she loves her house. Just an idea.
My mom was an absolute squirrlel there for a minute while we were getting things under control and flash forward to the late stages and we have a live in angel and she is amazing and affordable!
Your mom doing any of the meds? like Aricept, Namenda and there's that new patch... for mild to moderate. can't remember the name haha.
the pills made a HUGE difference in my mom and she was able to go a lot longer. it's too late for the patch for my mom.

Maybe you'll be able to find that she has the resources to have someone live in with her. Reverse Mortgage?

It can be a lot of work but it will save you the heartbreak of being the one who permanently removed your mom from her house.
I am here to tell you that once it is set up you and your mom can continue to have a mother daughter relationship.
Get her out of the psych ward before she goes nuts.
She's not nuts, she has Dementia. Dementia is not a mental illnes. it is a disease that affects the brain.

Good luck and you can do this!!

lovbob

Thank you again for all your support, it helps tremendously. I have an appt to meet with an eldercare attorney next week to try to figure out her financial situation. All so confusing to me (I'm a nurse with no head for finances beyond balnancing my own checkbook and contriuting to my retirement fund). Trying to sort through her heaps of papers is overwhelming to say the least. I seem to swing between deep grief and over the top anxiety along with trying to focus at work, I think I aged about 20 yrs in the past few days (despite the skin breakout at age 54 which makes me feel like 15 yrs old again). Funny, I thought when my children grew up, I'd be in for some "me" time. Haha. My heart grows out to all of you who find yourselves in this intense situation. Love to all of you.........DelilahAnn

Delilah, you are taking good care of your mother. You did the only thing you could do, when finding she had called 911, the police arrived, and your mother had been talking to people who weren't there, and imagined that she had been robbed. You did the right thing; the fact that you had to listen to your mother getting angry at you doesn't seem fair at all, does it? But you're in good company here. Caregiving our parents often feels this way. Many of us here have said it is the toughest job we've ever had in our lifetime. ( me included). If I had been in your shoes with the situation you described, I like to think I would have done the same thing you did, but who knows if I would have had half the guts and smarts you did. I might have wimped out. But you didn't. You took decisive, focused action. I am proud of you for having the strength and the courage to make the tough call here and do right by your Mom. Now your mother is in the care of trained professionals who can give her the best possible care, and who can understand, diagnose, and treat her condition. Yes, your mother is mad at you. This unfortunately goes with the territory. The first time my mother berated me and got angry at me because I was "helping" her, it hurt so much. I did cry about this, knowing that she had cast me as the villain, all for doing the right thing to care for her. But after a while, I didn't cry any more, I just kept doing what I thought was right. I can't tell you how many times my mother got mad at me.....for "forcing" her and my father to move into assisted living, for "trying to run her life," for calling her doctor "behind her back" to discuss my mother's illness, for calling the floor nurse when Mom was in the hospital to check on my mother's condition. All of these actions I took which angered my mother were things I did because I loved my mother-- deeply. I say "loved" in the past tense because my mother is now deceased. And as I look back now, I don't have a single regret for having done what I needed to do to make sure Mom was properly cared for. And I believe you won't later on either. I honestly believe that if we are guided by our love for our parents, and follow that inner "compass" of love, we will end up making the best decisions on our parents' behalf. And I also believe our parents will thank us some day in Heaven.

Many caregivers on the site endure extremely difficult conditions, all because they are being faithful to their parents. They are not up and leaving and abandoning their parents.

I'm so sorry your mother's cognitive function just started to decline in the past three years. It's so hard to see, isn't it? We grieve the loss of our parent as we knew her or him.

You are so open and honest in your post. Obviously you are a person with a good, loving heart. God will guide you through your caregiving journey. You can always come here to talk.

DelilahAnn, we moved my mom to assisted living instead of a nursing home. Check out all types of residential care in your area. The assisted living facility keeps Mom pretty busy and still allows her some independence with her own "apartment" her own furniture, etc. She does not yet need full time nursing care, but certainly does not need to live alone any longer. Like your Mom, she was delusional, forgetful, and very independent. If Mom needs nursing care later, we can actually hire a private nurse to attend her in the facility at about the same cost of a nursing home.

The research process takes time and patience. In the meantime try an adult day care or some type of in-home care. Call your local Council on Aging for references.

Thank you for your responses, Its uplifting to known there are people who who care.
Yes, they first fuled out a UTI and any other medical cause for her delirium. In fact thats how I got her to go with me to the ER. I told her that i think she may have a UTI and we chould check and then go out for dinner. (I'm a nurse, so she listened)

Did they check her for a UTI when she went to the hospital? As I understand it, those are some of the symptoms of an infection. May not be the case, but I'd sure rule that out first.

Dear DelilahAnn, I have been where you are at. In fact, I still am, to some extent. I had to place my dad in a Geriatric Psychiatric Hospital, who then transferred him to a nursing home. He wasn't just talking to people, but doing other bizarre things, and was a danger to others, including himself. I was the one who signed him in. It was horrifying, but justified, though it felt terrible. He is still incarcerated, 3 years later, and needs to be. He has adjusted, and so have I, but he is also declining. I attended lots of support groups, read everything about his diagnosis I could, and talked to Physicians, Social Workers, nursing staff, etc.

Might I just say, you are not killing her, but looking out for her best interests. We get blamed for a lot, but have to do what's right. And sometimes we are forced to make those hard decisions. It helps to say, "The Doctor says..." And know in your heart you are doing the right thing to protect her. You have to be convinced it is the right thing to survive this crisis. My heart goes out to you and your mom. It does get easier, but never feels good. When you find a really good place for your mom, it helps. But making the decision is tough, so I won't pretend it isn't. Know you're not alone. Prayer helps immensely; in fact, I wouldn't do well without God's help.