My mother's cognitive function has declined over the past 3 years. At first it was just difficulty with word finding and forgetfulness. She lives alone and has managed well until recently. She started thinking that her money is being stollen and her thought process and reasoning started to decline. 3 days ago, i got a call from the police while I was at work. She called 911 as said she was being robbed. The police told me she was talking to people in the room, who were not there. Ibroght her to the hosp ER and she was admitted to a psych facility. She is so angry at me, and wont speak to me when I visited today. She screamed to let her out and they had to give her Haldol. I will have to make decisions regarding possible placement in a nursing home. She was so independent and happy in her home. I feel so incredibly sad to rip her life away, it feels like I'm killing her.
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.
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.
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?
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.
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.
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.
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!!
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.
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.
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)
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.