Rapid Decline or Delirium

mickenny

My wife was diagnosed with Alzheimer 6/7 years ago in her early 60’s. She was doing ok with typical symptoms like forgetting things or mixing things up. However, two months ago, she starts mumbling and talking to herself quietly and not responding to our conversation much. We went to see our family doctor and did blood and urinal tests and all come back ok. However it seems like her condition is getting worse. Now she is in full on hallucination non stop. She talks to herself with different people in her past and she is saying out loud all the conversations, even the respond from the imaginary people. She is also now in full on anxious mode as she thinks someone is stealing all her belong. She is very agitated everyday and will not stop the self talking and keeping pacing around to find valuable items and hide them. We can’t see the Alzheimer specialist doctor until mid February. Is there anything we should do? Is she having delirium and needs to be treated ASAP? It seems like a rapid decline in the last two months and it seems to still declining.

M1

Welcome to the forum. There are medications that can help with the agitation and delusions. Some primary care folks are comfortable prescribing these and some are not- ask about Seroquel or Risperdal, they are the two most commonly prescribed. If your primary care won't do it i would ask to be seen sooner or take her to the ER, February is too long to wait. I'm sorry you're facing this but you've come to a good place for support.

Joe C.

mickenny, Welcome but sorry you needed to seek out our community. Seroquil worked wonders when DW became delusional. It did not work overnight and took a few weeks to see the full effects but it did quell the delusional. When she first started taking seroquil it really zonked her out but not so much once she acclimated to the medication. Over time we had to tweak the dosage level to keep the delusions at bay.

Quilting brings calm

My mom was diagnosed with delirium twice. First over four years ago when she should have been diagnosed with a UTI instead, but wasn’t. Second last month when she ended up in the hospital after a fall. The first time, she eventually got medication to treat the agitation. Neither time resulted in any medication to actually treat the delirium. The second time we knew it would improve on its own once she got released from the hospital and got back to her normal environment.

Has she had a change in environment, such as a trip, hospital stay, etc? Has she been sick? If not, I’d ask for them to retest for a UTI- or just actually give her an antibiotic in addition to medication to treat the agitation. If the doctors had just believed us four years ago and given mom an antibiotic, she might not have ended up so bad that she got urosepsis.

Ed1937

I don't post much anymore, but I agree with Quilting. Have another urine sample taken, and ask that it be sent out to a lab for a culture. Dip stick results can be much more faulty than lab results, and an ongoing UTI can be fatal. A UTI can be present with no typical symptoms showing, so you can't really know if there is an infection without testing. UTIs can have a wide range of atypical symptoms. It's such an easy test that it doesn't make any sense to me not to have it done.

harshedbuzz

I agree with re-doing the tests for a UTI if a culture wasn't done. My mom's PCP always orders a lab culture with any in-office test; yours might have as well. My mom doesn't have dementia, but at 86 she goes absolutely off-the-rails with a UTI. She's paranoid, aggressive, uncooperative and her BP is all over the place (202/110 at noon and then 98/67 at dinnertime). Having been through dementia with dad, my sister and 2 of her sisters it's terrifying.

It sounds like your wife's disease may be progressing if it's not a UTI. It's said that EO dementia tends to progress more rapidly than when a person first has symptoms after age 70. It could be she has mixed dementia with Vascular being one part (this is thought by some to be more common than having only Alzheimer's). VD tends to progress in the manner you are describing-- a kind of plateau baseline that is maintained for a time before a sudden shift to greater impairment. My aunt and my dad both had dementia at the same time. His was mixed Alz and WKS and resulted in a fairly typical gradual loss of cognition over time until the end when it sped up. Hers was primarily a slowly progressing Vascular type. She clearly had symptoms when her husband died in 2003 per her PCP, but she was able to remain independent in her home for a good five years before things went sideways. After she went into MC, she continued to stay at a baseline for a year or so before an obvious drop in abilities. Since she lived 300 miles away, I didn't get to see her often but there were times when she was pretty much the same in October as she'd been when I saw her last in March. She passed in 2018 which is a little on the longer side of the life expectancy for VD.

HB

mickenny

We did start with Seroquil 25 mil. It makes her super sleepy at the beginning and the doctor said only give it to her when she is restless. However her condition got worse and we start giving it to her for a week or so now and haven’t notice the big changes in her condition.

I will ask for another blood and urinal test again as her baseline has changed so much in a month. Thank you for everyone input.

ButterflyWings

mickenny - my DH barely registered 25mg of Seroquel. It was increased to 50mg pretty quickly and we finally saw improvement in his delusions and hallucinations. Then tweaked again after a few months, to 50mg in the morning and 50 mg at night (for a total of 100 mg).

For the last 3 years at least, he has been on 300 mg a day and it is like a magic pill. Doses are100 mg morning, afternoon b4 sundowning, and at bedtime. It is not too much for him - no sedation or sluggishness - and without it he starts showing a snarky and cranky side that I do not want to get started, because that then ramps up to a Jekyll and Hyde nightmare that I never want to struggle with again. Esp with UTIs.

This is not a large man, BTW, just has a high tolerance level for some meds and Seroquel/Quetiapine is one of them. Do not worry that it may need to be increased to much higher dose under his Dr's care, and given like clockwork...not just "as needed".

mickenny

https://alzconnected.org/discussion/comment/193148#Comment_193148

Thank you. I am getting more nervous and worried now as my understanding that multiple sensory hallucination is not that typical in Alzheimer. I wonder if it is something underlaying that we overlooked. However I don’t know which direction to seek help. Tomorrow appointment with the family doctor is only a phone call appointment. I believe it will followed up with an in person appointment shortly.

ButterflyWings

My DH has Alz, and he has had multiple sensory hallucinations. Mostly auditory and visual. Seroquel at fairly high dosage is what has kept it more in check through the years.

He still has perception problems like mis-identifying sounds and also can look at a shape (say, a pillow or bunched up blanket) and start talking to it, thinking it is a person. Not sure where the line blurs between his mistakes due to some of these 7As of dementia losses, and maybe triggering an actual hallucination. Just wanted to encourage you not to worry that you overlooked something...there are so many different paths that the brain damage takes from one PWD to another, even with the same diagnosis.

Just keep paying attention and do stay safe as best as possible if hallucinations or delusions start to trigger anger, aggression or other risky behaviors.

ButterflyWings

Regarding the 7As of dementia...

https://www.vha.ca/2021/compassionate-care-strategies-using-the-7-as-of-dementia/#:~:text=The%207%20'A's%20of%20Dementia%2C%20or%20anosognosia%2C%20amnesia%2C,opens%20in%20a%20new%20tab).

Marta

With respect to the UTI issue: there now exists a more accurate and quicker test for UTI called PCR, which tests for bacterial DNA. This test has identified bacteria in @ 35% of patients who had a negative urine culture.

mickenny

https://alzconnected.org/discussion/comment/193172#Comment_193172

Thanks. Is your DH having hallucination non stop? That seems the case with my DW. And it is alarming. Sometimes she will get super agitated and suspicious that she won’t take the Seroquel. Forcing it will just make it worse. That is not helping with my situation.

Finally able to get a CT scan for this coming Sunday. Hopefully she will cooperate with and stay still for the scan.

ButterflyWings

https://alzconnected.org/discussion/comment/193237#Comment_193237

Hi - it was fairly constant and escalated without his meds. Even 1 missed dose.

Seroquel can be crushed. Stir it into a small amount of pudding, her juice, ice cream, tuck it into a blueberry...whatever it takes. She need not know you are giving it to her. The paranoia is part of her disease.

You need to get the Seroquel in her on a regular schedule for it to help with the hallucinations or delusions. Maybe your neuro or geripsych can provide some helpful ideas if you call their after hours line. I would not wait for an appointment.

Sherry LD

https://alzconnected.org/discussion/comment/193172#Comment_193172

I am back - it has been several months of very disheartening events - I have a question though - if the LO is also an alcoholic would the Seroquel be something they won't look at? DH has the hallucinations also in the evening sometimes and it's hard to tell if it's the alcohol, sundowning, hallucinations or all of the above.

harshedbuzz

@mickenny

My dad had multisensory hallucinations. In the mid-stages, he started with auditory ones and complained about "the kids" not settling down after their bedtime. It wasn't ever clear who "the kids" were; his irritability and need to control around it seemed to suggest he'd time traveled to when my sister and I were young or perhaps when they had custody of my nieces for a time but it could have been randos. He would never answer my mom when she tried to figure it out. She generally managed this by leaving the room for a bit and returning claiming that she'd told "the kids" to knock it off. He also went through a phase around this time where he misidentified people in the reflection of windows at night or in scale portraits.

In the later stages he started to have visual hallucinations and would sometimes converse with them, so I would assume he was hearing and seeing things. With the exception of the "small people who walk through walls to use his bathroom", the visual hallucinations tended to be pleasant for him-- often old friends stopping by. I was once told sharply not to sit in a chair where one of his golf buddies was already sitting.

He took 25mg of Seroquel morning and night. Regular Seroquel can be crushed but the extended release can not be. Your pharmacist can tell you which you have.

@Sherry LD

I'm sorry things are going badly. Perhaps it's time for you to start a thread of your own to share about that or even just vent.

FTR, my father took Seroquel successfully with considerable alcohol consumption. His original prescriber was a neurologist who diagnosed him and was aware of his alcohol use. His geri psych took over his meds about 6 months later and was OK with continuing to prescribe it.

HB

mickenny

@harshedbuzz

thank you for your input. Is your dad hallunciation ever go away? My LO is basically have it 24/7. I hope she can have some break as most of hallucination is her belonging got stolen and or someone is trying to harm her. So her conversation can be aggressively and violent.

In the last week, there are two nights that she becomes restless and not slept. It seems like when she did not slept, her hallucinations will be “quieter” the next day as she had a hard time hearing it. So far we can only able to successfully give her 25g Seroquel in the afternoon. The morning dose we have to hide it in her coffee. But we haven’t see much improvement yet.

harshedbuzz

@mickenny

For dad? No, the hallucinations never went away. But as I said, his hallucinations didn't trouble him all that much and responded to us shooing away the ones that irked him.

That said, it can be really hard to parse exactly what you are seeing behaviorally because often it's a mix of things.

Early on, dad reported "seeing" people. The first time he was in the midst of a psychotic episode that was due to his alcohol-related dementia. This was more of a visual processing error than seeing what wasn't there. He was home alone in his home on the golf course which has no window treatments covering the glass in the open dining/living area and also a large 2 story gallery wall of art-- some large portraits and prints framed with reflective glass. The "bad guy" he was seeing was either a painting of a person or his own reflection in the glass. This isn't all that uncommon is often a trigger for PWD who won't cooperate around showers or bedtime until mirrors are covered. You can buy sticky panels that can temporarily cover mirrors online of at big box home improvement stores.

Dad also has a lot of paranoia and delusions in the middle stages of dementia. Delusions are false beliefs. He didn't actually see or experience these things he talked about, but he knew these things, and as a result they were his reality. This can be frustrating behavior to manage. Sometimes a PWD will fixate on a specific family member or fellow resident in their MCF and accuse them of all manner of crimes. He accused mom of having sex with men in the parking lot of the local Rite Aid and me of selling his house on the golf course for $360K less than it was worth. Other folks here have reported their LO fixated on some person at their MCF accusing them of stealing things or talking trash about them.

Somewhat related to false beliefs are conflated memories. This is when a PWD recalls the gist of something that did happen but is hazy on the details of the who-what-when-how of the event. Dad's ARD is known for this being a common behavior. Initially this felt like dad was rewriting history but these stories all had a commonality in that they were deeply upsetting to him and in ruminating on them, he backfilled the antagonist of the tale as me because I was the person in front of him. One story centered around him having to collect his sister's and my sister's kids at a bar when their mom had gone off with some guy they'd just met. They were troubled women and categorically terrible parents-- both of them. His version, shared with my DH and teenaged son, put me in the leading role as the woman who abandoned her kids for a good time. FTR, I only have the one and at the time dad was kind of iffy around the pair of them. He referred to my husband of 35 years as "the guy Harshed is shacking up with" and mistook his Japanese-American urologist for my son who looks more like Ed Sheeran. After he died and I did a deep dive into his investments, I discovered that the "missing $360K I stole" were losses from bad day-trading decisions before he forgot how to use his laptop. He couldn't accept responsibility for his actions, so he put it on me.

You mention her tendency to aggressive and violent talk. We saw that with dad in the last year of his life. I'd visit him and he'd tell me all about having been thrown in the trunk of a car and then murdered the night before by the bad guys. Other times we'd be sitting in the living room and he would report on the blizzard or hurricane outside when he could see out the window that it was perfectly sunny outside. This kind of made no sense at first until I noticed the horrible crimes were more or less the plots of the previous evening's Law & Order: SUV or one of mom's other crime dramas. Since these absolutely terrified him, she only watched them on her small kitchen TV alone. I put parental controls on his set-top box which kept him off all-news channels, TWC and the channels that carried a lot of the crime dramas. Once we restricted his viewing to nature, old sitcoms, golf and football, and the auto auction the crazy violent talk stopped. I noticed once he went to MC that they heavily monitored TV viewing to avoid this; their 5 TVs had sports, games shows, TCM, old sit comes and Hallmark Channel.

HB

M1

don't put too much hope in the CT, not likely to show much, more helpful for ruling out strokes and tumors.

I believe there is a liquid formulation of Seroquel that you could put in drinks or foods. Ask your pharmacist

mickenny

@M1 Understood. Just that without the CT scan our primary doctor cannot eliminate any other underlying cause of this drastic changes.

However, an interesting night as I gave her Ativan (Apo-lorazepam) 1mg before the CT scan. We also gave her the regular Seroquel (mint quetiapine) 30 mins before the Ativan, in an hour she starts getting quieter and sleepy, and then in 1.5 hours, her hallucinations is 90% gone and totally engaging in our regular life. She is happy and calm. I cried because my LO is back to her nice soft normal self. I am not sure if it will last the whole night. But it give me a glimp of hope that maybe there is a medication to make things manageable again. She was a bit confused and asked where all the “villains” in her last 2 weeks hallucination go. I told her they all left and go back to their family and will not come back.

Anyone have any success with the Ativan? I know it should not be used for extensive period and the drug affect will lose in the long run. But I will definitely note to the doctor about this situation.

jlaxum

My husband is 55 years old and has been pretty normal for the past few years except for forgetfulness and needing one step instructions until about a month ago. He has been cussing and fussing with himself but he thinks he's fussing at his "brothers" (doesn't have any biologically). It's like he sees other people that aren't there and sometimes it's his own hands or legs that he's accusing of things. I'm only 50 and can't retire yet to care for him 24/7 and he doesn't seem to fit a memory care facility yet as he is able bodies and strong and young. He was going to a daycare and that would be great for him to continue going to but he can't while he is fussing and cussing and occasionally hitting himself. He has been prescribed 25 mg in the morning and 25 mg in the evening of Seroquel. I haven't noticed a change yet in about a week. Does anyone have any advice about either medications or caring for him?