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Precipitous changes following difficult airline trip
Posted: Wednesday, August 14, 2019 2:53 AM
Joined: 8/22/2017
Posts: 423

Has anyone experienced a very sudden and drastic decline like this -- I am pasting/edited  from the message I sent to his PCP

We took a five day trip to CA to visit with my ALZ husband's college friends (annual event of the last years). He was passive but seemed basically the same during visit in the Eastern Sierras. We had a difficult return trip, plane returned to gate, seven hour delay.  Since our return he has been almost unrecognizable -- very confused, needs help to find the bathroom, where to sit, asks questions that are much more bizarre than before. We have a deck where we have been sitting due to warm days -- I have gone in to cook dinner, or whatever, and he asks me who the people were out there on the deck -- "not that they were doing anything, but I didn't know who they were" -- there was no one else on the deck -- nothing at all like this before. Today I left him alone for about 20 minutes to go to the grocery store. On my return he was on the sidewalk, gesturing strangely at an empty car -- he was talking (not in a happy way) to someone in that car who was not there. I explained to him that there was no one in the car and he seemed very confused/annoyed by that. 

General pattern for the last months: he wakes up very, very tired. I make coffee. By mid-day he becomes quite agitated, usually asking about going  as soon as possible, to visit his parents (both dead).  I explain that, sometimes show him pictures of their funerals etc, trying to calm him down and distract him.  We sit on the deck, and I assure him repeatedly that this is our house (now he finds that strange), that we have lived here 26 years, and I will always be here with him -- he is grateful, and thanks me, but the need for reassurance is constant -- if I leave the deck, other non-existent people show up there -- if I go to the store, he remonstrates with a non-existent person who seems to be in the car parked out front -- Within the last few days, he needs to be shown where the bathroom is, whether upstairs or downstairs. I stopped him from trying to urinate in our closet last night -- he had become confused between the closet and the bathroom. 

Such a sudden precipitous decline -- I have been reeling but coping and working for the past year (5 years since dx) -- now I am basically in shock.  I know I am still fortunate that he is, as he always has been, a nice person -- basically a kind, wonderful person -- I realize other people are and have been dealing with much more difficult, even abusive spouses and with much longer histories (Elaine, I think of you often). But now it seems to me that my sweet guy is turning the corner towards psychosis.  PCP appt tomorrow. Any thoughts?  Thank you.

Posted: Wednesday, August 14, 2019 4:02 AM
Joined: 2/2/2014
Posts: 5636

1)  step wise declines are not unknown with no precipitating event.  DWs mirror self misidentification psychosis  began at home.

2) airplanes are pressurized  to the equivalent of 8000 feet.   Hypoxia is possible

The lower partial pressure of oxygen at altitude reduces the alveolar oxygen tension in the lungs and subsequently in the brain, leading to sluggish thinking, dimmed vision, loss of consciousness, and ultimately death. In some individuals, particularly those with heart or lung disease, symptoms may begin as low as 5,000 feet (1,500 m), although most passengers can tolerate altitudes of 8,000 feet (2,400 m) without ill effect. At this altitude, there is about 25% less oxygen than there is at sea level

Whether short low grade hypoxia similar to an airplane flight can trigger worsening of symptoms is not known.  Last time I looked it was thought unlikely to affect the underlying disease. 

My own work is in carbon monoxide hypoxia due to fires . People who survive  carbon monoxide exposure display cognitive impairment   CO is also a neurotoxin so sorting out teh hypoxic from the neurotoxic effects is difficult


Posted: Wednesday, August 14, 2019 6:31 AM
Joined: 8/8/2014
Posts: 884

Could he have a UTI?

Also, my expertise has been that it doesn’t help to explain that dead people are dead, or that there is no one on the deck. Those explanations add to my husband’s agitation. I confirm what he is feeling and try to redirect. Fiblets sometimes come in handy. Oh, yes, your parents are enjoying Florida.” “Those people on the deck are going home now”

Posted: Wednesday, August 14, 2019 6:43 AM
Joined: 4/4/2018
Posts: 166

Good morning McCott,  My DW also has done the precipitous drop with delusions.  We did a test culture for UTI then the Neurologist prescribed Seroquel (or the generic equal) in a very light dose.  12.5 mg /day, 1/2 of a very small pill.  Improved but wore off after about 18 hours.  I doubled to 12.5 twice per day which was later confirmed by neurologist.   That has significant calmed DW, still delusions, but just now discussed without any agitation. 

My education was in counseling, so I am approaching these times (4-5 per day) with that hat on.  Open questions, long pauses so DW can formulate her own answers.  I endeavor to not "tell" her anything, let her come to the correct conclusions.  Though I recognize that the result is temporary, it seems to be helping over the last few weeks.   It also could just be the prelude to the next dementia surprise.   (Discovering that the light at the end of the tunnel is an oncoming freight train.)

This all started on the 19th of July, so we are still in the early stages.     

Posted: Wednesday, August 14, 2019 6:47 AM
Joined: 4/2/2018
Posts: 2885

Totally agree with TayB4. UTIs can cause symptoms like that, and it is an easy test to find out if that is a problem. Make sure they do a culture. It may not be a UTI, but you should rule that out. This link was posted within the last few days, Please check out .

I also think trying to convince him that he is wrong will only confuse and agitate him.

Posted: Wednesday, August 14, 2019 7:14 AM
Joined: 9/5/2017
Posts: 579

Sounds like my daily life. My husband sees people who are not there every single day (since mid 2016) and needs assistance finding our bathroom.  He gets highly agitated when he sees these people.  I'll say "I don't see what you see" or I'll tell these people to leave.  Last few months he has trouble sitting, doesn't know how or where.  He is not pleasant to be around when he's agitated, very foul mouth.
Posted: Wednesday, August 14, 2019 7:38 AM
Joined: 3/28/2018
Posts: 307


No advice, just sympathy.  That is a lot to deal with especially while still trying to work.  It appears that you made the right decision to not replace the carpet. That would have been one more stress.  Let us know how the visit with his PCP goes.

Posted: Wednesday, August 14, 2019 9:52 AM
Joined: 12/4/2011
Posts: 18476

I'm with Lizzie and Tay.... check for anything physical and adjust yourself to this new world.

 I got so tired a adjusting..........

Posted: Wednesday, August 14, 2019 10:33 AM
Joined: 3/10/2019
Posts: 145

I remember reading a PubMed case report of a Lewy Body patient who developed rapid onset psychosis following an airline trip to a vacation resort.  There was no specific reason given, but it was suspected that the combination of hypoxia during the flight with the stress of unfamiliar surroundings might have been enough to trigger the decline.   If you add in a 7 hour delay (stressful for anyone) it seems plausible that it could all combine to create the symptoms you are seeing.  Hopefully it is only a temporary worsening of symptoms, not a permanent step down.  If you have a good psychiatrist it might be worth exploring some changes in medication to see if your LO can return to baseline.  This could be done in an inpatient geri-psych ward if you are having trouble managing him.  Good luck!
Eric L
Posted: Wednesday, August 14, 2019 11:20 AM
Joined: 12/5/2014
Posts: 1288

I've chronicled this on here before, but I'll make it short. A couple of years ago, we had a little family reunion in Utah (about 6 hours from our home in Southern CA). Aside from being miserable the whole time we were there, it took a couple of weeks (if not more) for MIL to regain her barrings once we were home. She'd ask us questions like "do you guys have any bathrooms in this house?" or "where am I supposed to sleep?"
Rescue mom
Posted: Wednesday, August 14, 2019 12:04 PM
Joined: 10/12/2018
Posts: 1494

We took a short trip a year or so ago. I was unprepared and stunned at how DH lost so many abilities/cognition in an unfamiliar place/rooms.

But it also took him a few days to get back to his “normal” even after we were back at home.

Posted: Wednesday, August 14, 2019 12:07 PM
Joined: 5/7/2018
Posts: 432

I am sorry you are going through this. We no longer travel because whenever we did, my DH would have episodes when he would not know me and would say I was kidnapping him or something else. This happened nearly every time we flew to see our daughters. He would have episodes at their houses as well. One time I could not get him on the shuttle to where our car was parked because he insisted that we left luggage behind. It just became too difficult to deal with, so we don't go anywhere anymore. As for the delusions, my DH was having them frequently and also believing I was a stranger out to hurt him. It would get aggressive about me leaving HIS house, so I usually just drove a way for a while. Sometimes I would have to text a daughter or a friend to call him and distract him so I could leave the house because he would stalk me. One time I had to run to the car and lock the doors because he thought I was stealing the car. We are fortunate to go to a neurologist at a branch of the Cleveland Clinic which only deals in brain health. His neurologist put him on a low dose of an anti psychotic which has pretty much stopped the delusions. We have had very few incidents since, although I don't like that he is pretty apathetic on it. Still we do trade offs with this disease. Nothing is ever like it was before.
Posted: Wednesday, August 14, 2019 12:30 PM
Joined: 3/5/2019
Posts: 7

Yes. We took a 3 week trip to Italy last November and had to return on day 2. During the flights over he told me he didn't know where we were going. Once there he seemed fine and then after a day went totally sideways. Up until that point he had been forgetful but nothing like this. Once home he calmed down and it was business as usual which is forgetful but functioning OK. I, on the other hand felt (and still feel) as if I had PTSD from just getting us back. He is desperate to travel but I'm terrified to get on a plane. We have a 10 day cruise coming up which leaves from and returns  to Los Angeles so we can simply get a car to the terminal. No flights involved. He adores the ocean and is really looking forward to it. I have trepidations but his Neuro is encouraging us to go and I will have Valium in case he gets antsy. I'll likely need it too. So hard to know the best thing for him. I don't even think about me any more.
Posted: Wednesday, August 14, 2019 1:58 PM
Joined: 4/2/2018
Posts: 2885

I am sure all of the above replies are truthful, I still think it would be a mistake not to be tested for a UTI. It is a very simple test, and if it is a UTI, and not treated in a timely manner, he might not regain anything he lost. There is no guarantee he will recover it if it is treated, but the sooner it is treated, the better chance he has. Really nothing to lose by testing.
Posted: Wednesday, August 14, 2019 7:13 PM
Joined: 6/12/2016
Posts: 1037

I’m sorry the two of you are experiencing these changes/behaviors. Is it possible that he is changing stages and the trip has nothing to do with the situation?

I wish you well and sincerely hope your DH finds peace and comfort.

Posted: Thursday, August 15, 2019 1:16 AM
Joined: 8/22/2017
Posts: 423

Thank you all -- they did a urinalysis -- no UTI --  Awkward to talk to the doctor with my husband sitting there, although he didn't seem to follow the discussion much  -- I had sent MyChart posts about the symptoms -- Doctor did suggest an SSRI or Seroquel -- I need to follow up on that tomorrow -- not clear how to decide -- depression or psychosis?  More the latter, I fear.   Does anyone take both of these?   

For the past 7-9 months he was asking over and over about his dead parents, very clear, pointed inquiries.  Now he is speaking in full grammatical sentences that refer to nothing and convey no meaning, with a strong undertone of confusion even more than anxiety --  I sense  he is struggling to figure out 'what's going on,' but just can't get anywhere.   It has been a real jolt -- I thought he was gone before, but this is a whole new level of just not there.  

On top of everything else, a good friend  (age 70), smart and way too fit, was recently killed by an RV -- bicycling near the Continental Pass in Montana, and today my husband's closest brother was  diagnosed with prostate cancer (which is not always very deadly).  I guess we should have had a horoscope done for August  -- or these are just the things that happen in the 'new old age' where we live long enough for these outcomes.

With appreciation, Mary

Posted: Thursday, August 15, 2019 2:47 AM
Joined: 8/22/2017
Posts: 423

Eric -- I am hoping that this will improve now that we are home.  Afraid to hope, but I have heard some accounts of amelioration on this site.  Tonight he told me he was going on a trip -- where, I asked?  Here, he said -- I'm going to this place.  Where we are now, I asked?  He said yes.  So now, that's my new idea of a trip -- we're going to this place where we are now, and that's it : )

Rick -- his MD suggested Seroquel, and I am grateful for your specific advice on low level start.  I had a meltdown years ago, way before ALZ dx and was given a 'sample pack' with 50 mg Seroquel -- I took one and basically could not physically move for several hours -- lay on my bed in a chemical straightjacket -- so I have been a bit leery about that drug -- but a much lower level might be useful.



Posted: Thursday, August 15, 2019 6:03 AM
Joined: 4/2/2018
Posts: 2885

I'm sorry it wasn't a simple UTI. And yes, there have been many people who have recovered all or most of what was lost after vacations, etc. Hopefully his recovery is something we will read about shortly.
Posted: Thursday, August 15, 2019 6:27 AM
Joined: 9/5/2017
Posts: 579

These meds re trial and error.  My husband is currently taking 100mg of Seroquel  twice a day.  I give one to him mid morning, then he usually takes a nap no longer than an hour or so after lunch, or sits on the couch for a little while.  Then I give him the second one along with 5mg melatonin around 7pm and he usually falls asleep within an hour.  Gets up once or twice to find the bathroom. 

In 2016 he started Seroquel at 25mg and the dosage increased over the years.   In 2017 he tried Zoloft as well as Seroquel.  With that combination he slept more during the day and was too sluggish so that med was stopped.   He is still agitated every single day no matter what but a brief break is helpful.  

Good luck.

Eric L
Posted: Thursday, August 15, 2019 12:07 PM
Joined: 12/5/2014
Posts: 1288

McCott - It did eventually improve, but there were times that I so wanted to be a smart-aleck and tell her "No, sadly, you bought a house with no bathrooms." Of course, our house actually has 5 bathrooms (because the original owners did an addition and added 2 more bathrooms) so her questions about bathrooms were both equally absurd and depressing.
Posted: Thursday, August 15, 2019 4:03 PM
Joined: 11/3/2012
Posts: 2176

My dh was on both antidepressant and sequel.  He did great on both.  It lessened his anxiety and kept him calmer and happier.
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