Alz/dementia mom so restless

marianHW · October 20

hi mom 87 on Rexulti for a yr for agitation towards caregivers, & she is always restless. She can’t sit still, always moving, sits in chair, next minute up & sitting in another chair or pacing laps around interior of house, then sitting back in same chair, then up doing laps and back in another chair. This doesn’t hurt anybody but I am 24/7 caregiver because she won’t allow a nurse and I have no patience for this up & down constant movement. End stage 6. Any advice? She’s clean, fed, not thirsty & doesn’t need the bathroom. Very OCD. Everyday we go to a store and she pushes cart & we get our steps in, she’s getting plenty of exercise. Any tips or tricks? By the end of day I want to sit down & relax, I’m exhausted & burnt out.

fesk · October 21

I am sorry you and your mother are dealing with this. Restlessness is a side effect of Rexulti but can also be part of the disease progression. Is her agitation under control? I would speak to her doctor about the restlessness. Maybe a reduction in dose or change in medication. How long has she been on this medication, how bad was the agitation and when did the restlessness start in relation to taking this medication?

Is there anything that will keep your mother occupied? Craft, tv, music, etc.? Honestly, you may just need to get an aide to help you. If it's the right person, you mother will most likely adjust to her.

SusanB-dil · October 21

Agreeing with fesk - do tell her doc. Perhaps another medication would be better.

Would she allow someone if you told her that she is helping 'them'? They are there for more hours for certification, or need more hours to help care for family… Also maybe look into adult daycare a day or more a week. We called it the senior center, and they could probably keep her more engaged in order to give you a break.

marianHW · October 21

thank you for your help. She’s been on Rexulti for a yr, up to 2 mg for probably 8 months. Put her on it because she will let caregiver take her shopping or out to eat, but very territorial once they get home to her house, she gets high blood pressure and threatens them & throws them out. She gets so upset & I’ve tried everything, most cnas quit. Mom was never like this before. I’ve tried , she’s your friend, she’s my friend to help me out. She has anosognosia , so she has no idea she has a medical condition & cannot reason. I have tried folding laundry , dishes, socks, fidget toys, works for 1-2 mins then more pacing. She’s not agitated or upset at all just very busy, all the time. Dr suggested Seroquel, lowest dose had her passed out for 16 hours straight. Never woke up to eat dinner& she doesn’t miss a meal or snack. I don’t want her to be a zombie, she’s still Mobil. Now she’s incontinent & I am the only one she allows to toilet her, this is breaking my spirit and my heart.

SusanB-dil · October 22

Yes - that is so frustrating!

But if she does even 'ok' while out and about, maybe you could still try adult daycare. Because, yes, you need a break!

edited to add: and do tell her doc this is still happening. Maybe there is still something else that might help.

Rule #1: Never argue with a PWD. Rule #1: Must take care of yourself. Rule #2: See rule #1 - both of them.

marianHW · October 22

thanks for your help, we did check out adult day care near me and they were dancing, everybody was happy, it looked like fun. I will try it next.

fesk · October 23

https://alzconnected.org/discussion/comment/284664#Comment_284664

This is very difficult. Are you having her see a specialist for medication management? A geriatric psychiatrist would be best. Do you think the restlessness started after the Rexulti started? Doesn't seem to me that the Rexulti is doing what it needs to if she's having so many issues with the caregivers. The right medication would help her in all situations. Also, the caregivers need to be trained in how to de-escalate situations. A lot aren't.

I would speak to the doctor to see if there is a medicine that is a better fit that you are comfortable with. Also, I'm not certain an adult day care is going to be able to handle these behaviors. I hope you are able to find a solution soon. It takes time - trial and error - but a solution should be able to be found that doesn't leave her like a zombie.

Alz/dementia mom so restless

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