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 How long to keep home - shifting in and out of awareness... 
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Joined: Mon Oct 15, 2012 8:40 pm
Posts: 2
Location: Henderson, NV
Post How long to keep home - shifting in and out of awareness...
My husband of 26 years has been recently diagnosed with LBD. Hallucinations began approximately March/April of this year and resulted in an admission and transfer to a senior-oriented behavioral health unit to control them after a horrible reaction to Seroquel.

We've been the full gauntlet of issues because he's had memory problems since a pulmonary embolism from a DVT in 2007. He's been on nighttime oxygen, to CPAP, back to nighttime oxygen ever since, being diagnosed with sleep apnea, then found to not have it, and now no one can study him because he doesn't sleep long enough to analyze. Either way, since 2007, most of his short-term memory issues had been attributed to his low overnight and naptime O2 sats, which are ongoing and his Cleveland Clinic Brain Center neurologist believes is accelerating and has aggravated the disease.

He started a huge step-down last week, falling into short (5-10 hours) and long (2-3 day) trance-like spells of almost complete shut-down. Eyes slitted, forgets how to walk and how to lay down. Hallucinates toilets where there aren't any. Caught him urinating on the bathroom floor in broad daylight last Saturday. Step-down forced me and my 17 year old daughter to re-admit him to the same behavioral health unit last Sunday. His medications are being readjusted from Risperdal, which his neurologist and psychiatrist believe may be aggravating his anxiety and restlessness. Starting Friday, he is on Zyprexa, which he seems more calm on, and so far...knock on wood...the shadow people are still staying away.

The other huge problem is the lack of sleep, and that he is most confused and most likely to be in the trance spells and/or shift into those overnight. He is therefore up, unmonitored unless my daughter or I happen to awaken and hear or catch him randomly.

We are now at an impasse. Bring him home or place him. It's breaking our hearts. In his cognitively aware times, he is fairly "normal" though he still can't do most things himself because he can't remember how to do them. MRI/PET scans show his entire brain is involved, including his cerebrum, which is causing him to slowly lose all his learned abilities. Wandering outside the home has only been an issue once, before his first trip to the behavioral health unit.

What to do?! We are up against knowing that as fast as he's changed in the past 5 months, if we pull him into a SNF from the behavioral unit for his 100 days of Medicare coverage after his hospital's is highly likely that he definitely won't ever be able to come home after that, when now if we bring him home and can have some help...hopefully some of it overnight, he may have a few last weeks at home.

The HELL of it is, he is fully aware that he may not be coming home when he is out of these spells, and it's killing him and us.

46 y.o. Married 26 years to 69 y.o husband diagnosed with LBD 2012. His symptoms began at least 2007, and we possibly saw beginning signs as early as 2003.

Last edited by foorfamily on Sat Oct 20, 2012 7:45 pm, edited 1 time in total.

Sat Oct 20, 2012 3:51 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How long to keep home - shifting in and out of awareness
This is, of course, a decision only you and perhaps his doctor can make but this is what we did: After he was in the SNF for 'rehab' after a hospitalization, I was able to bring him home for two years, minus a couple of months while I was selling our house, buying another and moving and I placed him in a dementia care facility.

After about two years, it became impossible for me to take care of him at home any more and I placed him in a SNF, where he has been for almost 22 months. He is so delusional that he does not, to this day, know he is in a facility and believes I live there, too. :P

You will be in my prayers as I know it's difficult. Please know we are all here to support whatever decision you make. We can only do the best we can. Hugs and God bless!

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sat Oct 20, 2012 4:38 pm

Joined: Mon Oct 15, 2012 8:40 pm
Posts: 2
Location: Henderson, NV
Post Re: How long to keep home - shifting in and out of awareness
It is so difficult because we don't know how long he will have lucid vs. non-lucid fluctuations, but your post has made me realize that there may not be as much finality to this current placement as we are currently thinking.

The unit is letting them know he is the easiest patient on the floor. He is a very calm man, always has been. He is just angry and frustrated at his condition and hates being on medication, yet as of right now, we are being pigeon-holed into dementia lock down only, even though he is cognizant about 60+% of the time.

We're having many facilities turn him down because of either the LBD diagnosis, or because he recently urinated on the floor, which I don't understand how that is much different than someone who is in adult diapers, and that may likely be the solution to get him accepted.

We are on such an emotional rollercoaster.

46 y.o. Married 26 years to 69 y.o husband diagnosed with LBD 2012. His symptoms began at least 2007, and we possibly saw beginning signs as early as 2003.

Sat Oct 20, 2012 5:19 pm
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