Constant agitation and psychotic behavior

paulst · January 1

First time on here, just starting the journey to seek help for little old me. LO is now 7 years into early onset Alzheimers...things are rapidly changing. I'm her 24/7 caregiver and its getting tougher and tougher to navigate through the day. The only calm is after a nights sleep, the first 2 hours in the day are calm and she appears at ease, understands most things but as the day proceeds she gets more and more agitated, confused, combative. She's now on a new med the doc prescribed Quetiapine, but it appears to make her even more psychotic after she takes the medication, especially when she gets her second tablet near bed time, that's when things get very difficult. She's been in rapid decline the last 5 months especially the last 2. I was looking at in home caregivers to offer me some respite but struggle with the mine field of what Medicaid covers. I know that very soon the tide will change and force my hand to admit her to a facility to provide 24 hour care. She has no money, I am on SS benefits and can barely keep my head above water. We are not married, I've was just the one who stood up to care for her when it all started, hoping other members in her family would jump in...but nothing in 7 years, so that horse has ridden off in to the sunset. I'm am on my own, I had to quit my full time job to care for her, now my journey is getting tougher with each day. If anyone can offer options, steps to take , who to talk to, I'd be grateful as this minefield of information is overwhelming.

P.

wizmo · January 1

Have some experience with quetiapine/seroquel for agitation. For my DW in early stage 6 she briefly got worse before improving, with agitation less frequent and less severe. It took 4-5 days to see the positive change so maybe give it some time. We also have gone through multiple increases in dosage about every 2 months as it doesn’t seem to last or does not keep up with her progression.

M1 · January 1

Welcome to the forum Paul. She is fortunate to have you in her life. Is there a social worker or Medicaid assessor who is helping you regarding what services are available for her? You should be able to get some advice from your state about what is available. Quetiapine or Seroquel is a good drug but there can be adverse reactions, so if she truly seems worse after taking it i would report that immediately. Do you hold her power of attorney? You may need it in order to assist with placement.

You've come to a good place for advice and support, there are many experienced caregivers here very willing to help.

Gig Harbor · January 1

She sounds like she is near to needing placement. Since you aren’t married you can relinquish her care to her family. I know this sounds harsh but you may not have the authority to do all the paperwork for placement and you shouldn’t try to pay for it. If she qualifies for Medicaid a social worker should be able to help. I am not saying that you should stop “caring” for her but it might be time to make the family step up and help. When she is placed you can visit her and make sure that she is getting good care. If she has a psychotic episode take her to the ER and explain that you can no longer care for her. Be sure to have all info and numbers for her family to give to the social worker. No one will like you doing this but you have to consider how you are going to survive financially in your retirement and you may need to go back to work. You sound like a good person and you have done your best but now you need more help. Unless you force it the help will not come. Good luck.

ghphotog · January 1

https://alzconnected.org/discussion/comment/193059#Comment_193059

I second this! You stepped up as a friend I'm guessing and have sacraficed so much already for her. You are a true hero in that sense and she is very fortunate to have someone like yourself but legally you are not responsible for her care unless you get all of your POA's setup, even then you aren't legally responsible. You should turn her over to her family and I'm sure they will place her immediately as there is no way they are going to deal with it. Shame on them for letting a non-family member carry this burden for so long.

Constant agitation and psychotic behavior

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