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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 Increased confusion with illness
Coy has been under the weather for a couple of weeks. None of his usual getting-sick symptoms have shown up (no fever, no hiccups, no increased confusion) but he doesn't have his usual energy level. He has been able to bowl each week, which is a gauge I use for how sick he is. But several days ago he had a choking episode while eating and when his coughing increased I called his PCP who called in an antibiotic for him. This is day 3 of that drug.

He is normally quite independent in the morning. He may need some cueing (Are you going to shave today, Coy?) but he weighs, dresses, puts in his dentures and hearing aids, takes his pills, and eats the breakfast I prepare on his own. This morning when I checked on him eating his breakfast he had pressed all his pills into the jam on his English muffin and was trying to cut it with a fork. Sigh. For years he has been taking those pills with yogurt. He arranges them on a little plate, with those he likes to take in the same spoonful next to each other, takes them, and then also finishes the yogurt. I said, "Pills might work with soft bread, but I think that toasted muffin is too stiff and crunchy to help you take pills. Why not try the yogurt?" "Oh!" he said, "that sounds like a good idea," as if he'd never heard it before. I needed to coach him through the whole process and point out the pills he missed. I'm assuming this is a temporary decline, and he'll bounce back when whatever illness he has clears up. But it"s always an unknown, isn't it? He slept most of the day. For supper I gave him a milkshake with an Instant Breakfast blended in. He can almost always eat that!

Usually the confusion comes first, and then I notice some symptoms of illness. "Usual" is not "always" with Lewy, I guess.

My sister asked if we should reschedule the party we are giving for him next Sunday. I said that we really won't know until the end of the week. By then he might still be confused, he might be in the hospital with aspirational pneumonia, or he might be perfectly fine. Cross your fingers for us, please! 8)

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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


Sun Mar 27, 2011 10:23 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
Has your husband had a swallow study recently? It's really distressing when the dysphagia kicks in.


Sun Mar 27, 2011 10:54 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Increased confusion with illness
Jeanne, do you think he might have developed aspiration pneumonia? I guess it will be a few days before the antibiotic has time to work. I wouldn't cancel the party just yet. Hope he recovers soon! It's always something with Lewy, isn't 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.


Sun Mar 27, 2011 10:59 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Increased confusion with illness
Robin, he had a swallow study about 7 years ago. They recommended a feeding tube. He said no thank you. With that in mind, I'm not sure there would be much point in another swallow study. Thanks for the suggestion, though. By observation I would say he periodically experiences some dysphagia. It is worst when he is weak, recovering from an illness, for example.

Pat, it is always possible he has developed aspiration pneumonia. That is why his PCP is so willing to promptly start him on an antibiotic on the basis of a phone call. There is always a delay when I pick up that prescription, because a pharmacist must personally warn about the potential interaction with other drugs Coy takes. This time she flipped through his records and said, "I see that you are old hands at this. He has taken this several times, and all since he has been on the other drugs." I assured her I have discussed it with is doctor and thanked her for her diligence. We deal with lots of drug trade-offs, don't we?

Coy didn't have any trouble taking his pills with yogurt before bed tonight. I'll take that as an improvement, and see what tomorrow brings. :P

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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


Sun Mar 27, 2011 11:35 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Increased confusion with illness
Good Morning Jeanne,
I think 7 yrs is a long time between swallow studies and it might not change a whole lot but there might be recomendations as to how his foods should be prepared, you mention muffin it brought to mind when we started with swallowing issues I was told it should never be white bread and remove the crust,not saying a muffin is just using as a reference and the real start for us was liquids and it is possible he had an aspiration and when they start they become a real problem, I hope he is doing a bit better today !

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Irene Selak


Mon Mar 28, 2011 9:32 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
That's true, Irene...usually thin liquids cause the most problems and often have to be thickened to be safely swallowed. A speech therapist could evaluate swallowing and provide guidance. At my request, Derek recently had a speech therapy evaluation at the SNF. She didn't see any problem and I was relieved. This was not like the radiological swallowing study he had in a hospital setting three years ago. It might be worth considering.

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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 10:26 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Increased confusion with illness
Irene and Pat, thanks again.

The subjects of dysphasia, the tests available, and the options for dealing with are ones everyone in Lewy land needs to have some familiarity with.

I know that nothing will eliminate the risk of aspiration pneumonia.
A feeding tube would reduce the risk -- probably greatly reduce it, but not eliminate it.
A thickened liquid diet would reduce the risk -- I don't know by how much, but not eliminate it.

In explaining our position I am definitely not trying to persuade anyone else to take the same position. It is a personal decision and many beliefs and specific circumstances feed into it.

Coy will not have a feeding tube.

We gave the thickened liquid diet a sincere and thorough trial of several months duration. Coy became increasingly depressed and listless during that period, ate less and less, and lost weight. When he finally pushed his tray away, looked at me sadly, and said apologetically, "I can't do this any more. I tried," I agreed it was his right to make that decision.

In general, I do not approve of testing unless it will impact the outcome. When my mother (late 80s at the time) said she didn’t want further tests because even if the object proved to be cancer she would not accept treatment, her geriatrician respected that decision. Since Coy will not have a feeding tube and will not agree to a thickened liquid diet, and since we already know he has swallowing problems, I don’t see the value of having tests to pinpoint the exact nature of the problems. Been there, done that, glad it was available, don’t need to do it again. I would never discourage anyone else from having such tests, however.

Maybe we’ll change our minds as the disease progresses. For now, what we are doing supports our goal of maintaining quality of current life.

Jeanne

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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 3:05 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Swallowing
JeanneG wrote:
Coy will not have a feeding tube.
Dale and I discussed the issues of feeding tube; thickening liquids; and swallowing problems a long time ago. I know that Dale died quickly because he could no longer swallow - but I am at peace with that because he did what he had decided to do. In fact, when I talked about 'thickening liquids' many months ago, he said very firmly that he wanted nothing to do with that.

When he stopped eating, he never asked anything about food or drink. He was not hungry. The time was right.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Last edited by Leone on Mon Mar 28, 2011 3:37 pm, edited 1 time in total.



Mon Mar 28, 2011 3:16 pm
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Post Re: Increased confusion with illness
Jeanne, by 'thickened liquid' I am referring only to thickening the thin liquids, like water and juice. It doesn't affect the rest of their diet. Not sure if that's what you meant or not and I may not have made myself clear.

And I'm with you 100% on the feeding tube issue! It's a personal decision, of course, but we both decided that long ago.

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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.


Last edited by mockturtle on Mon Mar 28, 2011 4:20 pm, edited 1 time in total.



Mon Mar 28, 2011 3:22 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
The point of a swallow study now would be to determine if thickening liquids helps, what consistency is needed (nectar, honey, pudding), if a straw helps or hurts, if a chin tuck helps or hurts, and if there's silent aspiration.


Mon Mar 28, 2011 4:02 pm
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Location: Kalispell, MT
Post Re: Increased confusion with illness
Does aspiration pneumonia lead to a faster and "easier" death than what Leone and Dale had to go through?


Mon Mar 28, 2011 5:48 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post Re: Increased confusion with illness
It did with Mr Bobby. A beautiful passing. He just slowed down, went into a coma, and stopped breathing. {After asking his psychiatrist at the hospital, "What the #%& are you doing here, fellow?"].

Dorthea


Mon Mar 28, 2011 6:09 pm
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Location: Ocala, FL
Post Re: Increased confusion with illness
gailshef wrote:
Does aspiration pneumonia lead to a faster and "easier" death than what Leone and Dale had to go through?
As I understand it, both paths to death are caused by an 'incompetent swallowing mechanism.' We don't have a choice, do we?

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Mar 28, 2011 6:30 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Increased confusion with illness
Derek almost died in January of 2008 from urosepsis. Septic shock might be as 'comfortable' a way to die as any and could be caused by any systemic infection. In either case, you go into a coma. Derek's daughter died from septic shock from a MRSA infection several years ago after being on life support in the ICU for about a week before the decision was made to d/c life support.

_________________
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 6:48 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Increased confusion with illness
When Frank was in rehab, they did a swallowing test and tried the different consistencies in his drinks. He wouldn't touch them, and we also ruled out a feeding tube. We can only do what we can, the future is in God's hands.

Right now he is running a fever, his behavior flucuates so, I didn't think to check until later this afternoon. I couldn't get him off the couch, he was all crumbled up, so I just kept pulling and tugging, with a lot of complaining from him, until he looked comfortable, I'll just leave him there if he doesn't wake. There is NO way I can talk him in moving if he doesn't want to.

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


Mon Mar 28, 2011 7:08 pm
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