Care for the Caregiver

Dio

I'm new to being a caregiver and have definitely made some mistakes. I know I need help. Many resources keep reminding caregivers to take care of ourselves, but seriously, how? It's 24/7 care. DH doesn't trust anyone, which now includes me, so I can't consider outside help to get relief. I make the mistake of leaving him alone for a few hours while I took care of important business, and when I returned he was livid and developed the suspicion that I want to divorce and leave him. Now he's preoccupied with that fear. He won't sign anything. He won't do anything I ask. He's hovering over me whenever I'm texting. He has moments of good and bad--Dr Jekyll and Mr. Hyde. He's growing more hostile when he's in the dark mode. I had already called 911 twice within the last 2 weeks. But a 5150 in California can't hold anyone diagnosed with dementia. So I had to return to pick him up within a couple hours. Where's the relief?

Joe C.

Dio, Is your husband seeing a neurologist that could possibly prescribe medication to deal with his delusions? When my wife had delusions seroquil was a lifesaver.

Dio

Joe, he's seen by several psychiatrists over the course of the last 7 months. Been on Ativan, quetiapine/seroquel, lexapro/escitalopram, and just this week stopped seroquel cuz it isn't working to control his agitation and sundowning, so started on 5mg of zypreza/olanzapine. While the olanzapine is helping him sleep the last couple nights, daytime agitation is still prevalent. He is so out of touch and today won't take his medication.

Dio

Also, stopped lexapro.

jmlarue

I'm so sorry you're going through this. My DH also suffers from extreme agitation, anger and delusions which I find both exhausting and scary. I think I would reach out to the Alzheimer's Helpline at 800.272.3900. to talk about what you are facing and to see what resources for help they might recommend. Talk about the threat your DH poses to your safety and the need to repeatedly call 911 for protection. Ask them what are the consequences if you refuse to allow the hospital to discharge him home? Until you get some answers, it seems you have no choice but to get yourself to safety and call 911 - every day if needs be. 

Cherjer

Sounds like you may be going to the same dr! My dh takes olanzapine and lexapro. He also takes Ativan when needed. It has taken a few weeks for the olanzapine to work. Ativan works sometimes.  Just a guessing game. I think when I am calm he reacts better. However last night or actually early this morning he peed all over the bathroom floor...just could not find the toilet.! I lost it!!

daisyflops22

Hi, I see some familiar issues in this thread, and I could really use some advice about managing my LO's evening agitation. The problem started creeping in just a few weeks ago and at first was just sporadic. But the past week has been different. He angrily yells at me when he feels I'm either not doing something right or trying to make something worse.

Wednesday night we were watching a documentary. About 1/2 hour into it, he started yelling at me about the individual the program was about. Got up and stormed out of the room.

Friday night it was because I wasn't fast forwarding through commercials, fast enough. We were in the middle of a conversation and it was like a switch was flipped.

And just a short while ago, I noticed a patch on the wall that looked like it was bubbled. I asked him to come check it out. As he got closer, he just went off. 'I know all about it, leave it alone, don't touch it.' I didn't even finish what I was saying. I asked him to calm down, he didn't. I shouted back at him- sorry I brought it up.

I want to just fold up and cry. How can I make him understand that his behavior is not ok? He's on Lexapro for anxiety and depression. And if I'm feeling this fragile now, how am I going to manage my emotions down the road?

Dio

Daisy, so sorry you're going through this. I don't have any good answer either. During the 2 weeks when I had to call 911 3x, I cried so hard while he just watched without any emotion or empathy. I was hurting so much that I even thought about suicide (sorry, but I thought it was my only way out of this at the time) but quickly snapped out of it. His psychiatrist started treating his condition as Lewy Body Dementia and prescribed rivastigmine together with Ativan (as needed). So far the two seemed to be holding DH stable, although he still has bouts of anxiety and anger throughout the day and night. At least there are more days in which I can sleep now. It's a matter of finding the right combination of meds to treat the fluctuating moods. I don't know how long his stable condition will last. I can only take it one day at a time.

Ed1937

Daisy, it sounds like this might have started abruptly. If that is the case, it might be wise to take him in for a UTI check because UTIs can cause all types of symptoms. And the typical symptoms might not appear at all. Those are called silent UTIs. If you take him in, please ask for a culture on the specimen. That will give them the information on how to best treat it if there is an infection.

Jo C.

Dio, someone gave you incorrect information; a person with dementia can indeed be 5150'd into a GeroPsych Unit if medically necessary.   My LO was a 5150, and then the stay was extended beyone the first 72 hours in order to best adjust meds, check for the effectiveness and any side effects; more care was necessary.

A person going into a 5150, must be a danger to themselves or others.  This is easily documented when a person is threatening someone else.

One way to get a LO into GeroPsych, (and it should be GeroPsych because a regular psych unit is not a good care match for a person with dementia), is to work with a physician to accomplish this.

One can have either the primary care MD or the dementia specialist contact a psychatrist on staff at the GeroPsych Unit and refer the patient to them giving the reasons why this is necessary as the patient presents with such and so symptoms, medications to this point have not helped and he has attacked his wife and the agitation getting dangerous.

Often, the person is admitted through the ER; our MD used a fiblet saying my LO needed a chest x-ray and exam through the ER.  My LO waited on the ER guerney; soon, an RN from the GeroPsych Unit came to the room, she did not have an identifying badge on; she seemed like any other nurse in the ER setting. She talked to us, asked a few questions, and then left.  My LO was accepted for admission even though my LO was calm at that point.  Within half an hour or so, my LO was transferred by guerney into the Unit which looked like any other hospital floor. 

If a person has insurance, and Medicare does pay for inpatient psych care, that is good. If there is no insurance, it is very difficult to get accepted by a psych unit due to fear of non-payment.

May be worth trying this with the doctors making a referral to a psychiatrist on the staff of the unit; when admitted, the primary person in charge of the care will be a psychiatrist as it is a psych unit.

Good luck; I wish you well,

J.
 

Dio

Jo, thanks for the info! DH has been in the ER 3x now, and each time was discharged within hours on a 5150 submitted by the police. I don't know what's going on with the attending psychiatrist, but each time it was the same even after speaking with my DH's psychiatrist.