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 Increased confusion with illness 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Increased confusion with illness
Pat, we thickened thin liquids (I think to honey consistency)-- beer, gingerale, wine, water, tea, iced tea, orange juice, pom juice, apple juice, V8 juice, milk, etc. We avoided food that turned liquid in the mouth, like Jell-O and ice cream. We pureed broth-based soups (like chicken noodle) and in fact most soups, to avoid different consistencies in the same swallow. There were a number of other guidelines to the diet, the upshot of which was to make Coy's meals look pretty much like what you might feed to a young toddler. Coy really disliked the thickened liquids. I don't know if following just that part of the diet would be a whole lot more acceptable to him than doing the whole program.

Robin, Coy has already been told (twice) to try the chin tucks. He seems to think that is helpful, but has a really hard time remembering to do it consistently. Whether the recommendation was for thickening to nectar, honey, or pudding, we would not be following that recommendation. If a test confirmed that he aspirated silently, wouldn't that just confirm what we already know -- he is at risk for aspiration? So, would the test just help us decide whether a straw is useful or not?

Coy has had pneumonia twice in the last seven years (once requiring hospitalization). Neither time was testing done to determine whether it was viral or bacterial, but aspiration seems a likely bet.

Gail, I don't know how "easy" death from pneumonia is. I know that a doctor told a member of my local support group whose LO was in final stage that she could chose not to treat his pneumonia and that it "wasn't a bad way to go." Coy is in early stage. If what he has now is or develops into pneumonia I would definitely want it treated. I'm not sure that I would make that same decision in the final stage. He is better today than yesterday (though still not well.)

Gerry, I hope Frank gets over whatever is giving him a fever quickly. Do you think his cognition is generally worse today, or is it hard to tell because it fluctuates too much to establish a baseline for comparison?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Mar 28, 2011 8:09 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Increased confusion with illness
I'm never sure because his cognition and mood does flucuate by the hour at times, I've learned to just go with the flow. I wish he were one of those "sweet" husbands that others talk about.
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Mar 28, 2011 8:23 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Increased confusion with illness
Jeanne,
I so respect your decision, if this is something you and Coy have gone over before than that is the way it should be.

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Irene Selak


Mon Mar 28, 2011 8:37 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Increased confusion with illness
Thank you, Irene. It is a conscious decision based on a lot of thought. I don't suggest that it would be right for everybody. Someday we may even feel that it is no longer right for us. But for now, it fits where we are at and what we believe.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Mar 28, 2011 8:44 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 727
Location: LA
Post Re: Increased confusion with illness
For Gail: I did not refuse treatment for Mr Bobby's pneumonia, I welcomed treatment. I remember a note I sent to Robin telling her that as long as he was trying, so would I. He was just too weak to respond and we had to accept things the way they were. The breathing treatments were comforting to him. We all take "the cards we're dealt". It all ends with sadness.

Dorthea


Mon Mar 28, 2011 8:52 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Increased confusion with illness
Like Jeanne, I am thankful my husband can still eat and swallow and hope I never have to say 'no' to a feeding tube. It's part of his AD but actually doing it is different from choosing it on a written form. So, as others have said, I'll just keep feeding him by mouth until he can/will no longer take it.

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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.


Mon Mar 28, 2011 9:02 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Increased confusion with illness
Pat,
You bring up a very important thought! We really don't know what we would do unless we are faced with it, Jim had said yrs before no feeding tube, I repected his wishes but I have to tell you those last days I came very close to doing it out of panic, thinking I could save him from dying and it was my older daughter who really talked some sense into me, telling me this is not what her dad had wanted and I have often thought of that time in the last 6 yrs and even if I did it at that point , it wouldn't have saved him, he was actively dying already !

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Irene Selak


Mon Mar 28, 2011 10:20 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Increased confusion with illness
Gerry wrote:
I'm never sure because his cognition and mood does flucuate by the hour at times, I've learned to just go with the flow. I wish he were one of those "sweet" husbands that others talk about.
Gerry

Gerry, I know its my Dad I'm caring for. but I'm with you when you say you wish he was sweet. Dad can change right in front of my eyes, from the quiet, unassuming man of yesteryear, to a tyrant, shouting obscenities and threatening to kill my poor mother or myself. It is a terrible disease, that robs us all of our loved ones long before they take their last breath,
Keep up the good fight,
Ger

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cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Mar 29, 2011 4:40 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Increased confusion with illness
I'm afraid my husband falls into the Jekyll & Hyde category, too. And, unfortunately, mostly Hyde. The sweet moments are few and far between. Knowing it's the disease doesn't mean it doesn't hurt. :cry: Since he's been in the SNF it's easier to put the abuse into perspective and I don't have to live with it 24/7.

_________________
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.


Tue Mar 29, 2011 10:34 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3336
Location: Vermont
Post Re: Increased confusion with illness
I can SO relate to the Dr. Jekyll & Mr. Hyde personality changes. My dad was awful, most of the time to my sister the last few years. Usually he was good with me, but sometimes he could turn on a dime with me too, and it was just awful. Most times I could get him calmed down, but not always, and at those times when it was just too upsetting to deal with I'd make up an excuse and leave early. Getting away from him those times helped me keep my sanity. That was the one good thing about his immobility - I didn't have to worry about him getting up and hurting someone when he was out of control angry. I guess that was the silver lining...... Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Mar 29, 2011 10:53 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Increased confusion with illness
Gerry wrote:
Right now he is running a fever, his behavior flucuates so, I didn't think to check until later this afternoon.


How is he today, Gerry?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Mar 29, 2011 2:51 pm
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Joined: Mon Jan 17, 2011 7:17 pm
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Post Re: Increased confusion with illness
My father had a bad reaction to two different antibiotics. I think one of them was cephlexin or something like that. The other one started with an X and was from the same class of antiobiotic. They both caused confusion, hallucinations and a big downhill on many levels, ability to dress self etc. It took several weeks for the effects to wear off.

Toni


Tue Mar 29, 2011 5:25 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Increased confusion with illness
Hi Toni -
Probably the antibiotic was Keflex. Not sure about the X one.
Robin

PS. Just a suggestion...you might find that you'll cut down on web crawlers getting your email address and adding you to spam lists if you have a username that is NOT your email address.


Tue Mar 29, 2011 5:55 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Increased confusion with illness
JeanneG, Thank you for asking, Frank's temp was back to normal this morning but he slept on a 5' couch and he's 5'8", he had trouble walking, his hips suffered from not stretching out. He doesn't understand much so trying to get him up is getting more and more difficult. The temp was down but, the good news came with a dose of diarrhea. Guess you can't win them all.
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Mar 29, 2011 9:39 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Increased confusion with illness
Diarrhea and dementia are a bad combination, that's for sure!

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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.


Tue Mar 29, 2011 10:43 pm
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