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 Frequent stools 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Frequent stools
I know it happens to virtually everyone when they die [their bowels empty] and with Lewy I think it's some kind of neurological short-circuit. The nerves that control the sphincter muscles just don't get the signal there any more, just as they don't get the signals reliably to their skeletal muscles. His bladder has been similarly affected for years. These are part of the autonomic nervous system.

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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 21, 2011 12:06 pm
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Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: Frequent stools
Pat, My mother always had a difficult time with her bowels and over the years had several hoptital visits as she would become impacted.

She had bladder incontinence throughout her LB years.

In out city, to meet hospice criteria under dementia, one must have bowel incontence too. On Jan. 7, the date of her hopice eval. she was continent, therefore she did not meet hospice criteria. The evaluator saw my mom's decline. She could walk but barely.... After speaking with the hopice doctor they provided hospice service right away.

Some time soon thereafter, her stools appeared to just fall out. In retrospect her stools had changed prior to the evaluation. So in other words she may have had bowel incontince right before her evaluation and lasting for about a month. She passed away Feb 8.

My thoughts and prayers are with you.
Sharon E.


Mon Mar 21, 2011 12:35 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Frequent stools
Thank you Sharon. I'm wondering if I should have him evaluated for Hospice. I guess I'm mostly concerned that he will be alarmed if he knew what it was about.

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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 21, 2011 3:03 pm
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Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: Frequent stools
Pat,
I would recommend an evaluation. It is sooooo hard when we are so close to our LO's. Hospice is such a wonderful support!

My mother was very lucid in the end, well maybe not lucid but we had great communication on and off. The hospice worker bathed her on Friday. Mom offered a huge beautiful smile to her as she left that afternoon.

Mom wanted me to "go with her". I told her I had quite a few more years here and I would see her soon. She passed early Sunday morning.

God be with you,
Sharon E.


Mon Mar 21, 2011 4:28 pm
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Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: Frequent stools
p.s. Pat,

I forgot I wanted to tell you- I was concerned Mom would be alarmed about the hospice eval. She did not understand hospice! They hid or turned over their badges. The word hospice was never used. She never knew or at least was not alarmed and welcomed their attention.

Good luck,
Sharon


Mon Mar 21, 2011 4:31 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Frequent stools
mockturtle,
If you were an RN advising another family, would you suggest an evaluation for hospice?
Robin


Mon Mar 21, 2011 4:32 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Frequent stools
Robin, as an RN who has advised quite a few families to seek Hospice evaluation, I should find this an easy call. The difference is that none of my patients had dementia. They had either cancer, COPD or renal failure. The terminality [is that a word?] of dementia is not quite as clear cut as in those diseases. He's lost about twenty pounds but he still eats; is incontinent of urine and stool; has frequent infections; has minimal communication abilities and can only seldom walk now, with the aid of two people and the walker. I honestly don't know but I think I'll wait.

I discussed it with the charge nurse today and she said it was 'all up to his doctor'. :-\ He will be seeing a new neuro this week.

_________________
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 21, 2011 5:37 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Frequent stools
I know what a difficult call this is, Pat. I really thought we were going to hospice EARLY. I was prepared to wait through the summer. As it turned out, we are now at day 15 after beginning hospice and we're marking the days to the end. I never dreamed that would happen.

What is it they say? Life happens when you're making other plans.

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


Mon Mar 21, 2011 6:06 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Frequent stools
Pat, what is the worst that could happen?
1. It would upset Derek. I think you can avoid that without too much creativity, don't you?
2. They can turn you down and ask that you reapply later. You'd be no worse off than you are now, right?

I can see that this is not as clear-cut as cancer, but if it turns out to be an early call, what harm is done?

Sorry that you have to make this tough call. Sorry for all of us. :cry:

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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 21, 2011 6:15 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Frequent stools
If it depends on the doctor, it probably won't be forthcoming. The last doctor he saw was his PCP in January who shortly afterward fled to Cuba [or 'south Florida']. So he has both a new PCP [who has never seen him but has taken over the orders from the other doc] and a new neurologist. It's not likely that either of them is going to stick his neck out and suggest Hospice and that's OK. Other than paying for some of his meds, it probably wouldn't make much difference in his care.

_________________
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 21, 2011 7:38 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Frequent stools
As you know, if the weight loss is a certain % over a certain period of time, that alone would qualify him for hospice.


Mon Mar 21, 2011 9:08 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: Frequent stools
Pat - I had the same concerns about my dad and hospice. But, in our case they kind of "hid it" too - we never used the word hospice, we all just said that he needed more care so some extra nurses and helpers were going to come in, and was that all right with him? Being a formerly very social person, and keeping himself (by choice) cooped up in his ALF room, he was delighted that more people would be coming in to visit him. I was afraid he would freak out about the whole death issue, but he never was able to put it all together. He really liked the hospice visitors, the nurse and the aid, so it worked very well.
Re: meeting the criteria - when he had his first eval. he had lost about 90 - 100 lb. in less than a year. That did nothing to make him eligible. You either "score enough points" or you don't. Even with that tremendous weight loss, and going from size 42 - 44 pants down to size 34 did not make him "failure to thrive". It was a few months later that they finally said he made the criteria, and that was due to further weight loss and further ADL loss - he could no longer feed himself, could barely use his left arm, speech and thought even more garbled and confused, and more delusions. He was in terrible shape the first time he was evaluated and I was shocked that they said he didn't make the cut! 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.


Mon Mar 21, 2011 10:08 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Frequent stools
Pat, prior to having my Mom evaluated for hospice I called the sole hospice organization here and spoke with a counselor about how the system worked and what would make my Mom qualify. At that point she was losing 20 pounds a month and her blood tests were steadily getting worse. She was evaluated twice (both times requested by her PCP) and ended up not qualifying. The hospice nurse was very discreet about why he was interviewing my Mom and she actually enjoyed the attention and was willing to accept extra care. As it turned out she thrived in her ALF and has lived more than a year since the evaluations. They were right.

I guess my point is that I learned a lot by going through the process and I saw no downside for her or for me. Most likely hospice will treat her eventually and I know a lot more now about their services than I did then.

AnnieN

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Annie, daughter of brave Marie, dx 2007 and in ALF


Tue Mar 22, 2011 9:56 am
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