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 Another feeding tube question 
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Joined: Wed Mar 02, 2011 1:11 pm
Posts: 27
Location: Michigan
Post Another feeding tube question
My husband has been hospitalized twice in the past six weeks with a UTI and dehydration. He stops eating and drinking and can't move because he gets so weak. The doctor said this might become a pattern, and suggested inserting a feeding tube that could be used on an as-needed basis. Does anyone have any experience with this? I can usually still handle him at home, but if he keeps getting sick to the point where he can't move, I'll have to get him into a facility.

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Wife of a 60-year-old LBD patient who was diagnosed in 2003.


Mon Sep 05, 2011 11:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another feeding tube question
Debry, does he have an advanced directive stating that he does not want life-prolonging measures such as tube feedings implemented? The tube-feeding issue is a very delicate one, I think. You might find in a search that it has been discussed at length on this forum, the pros and cons.

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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 Sep 06, 2011 12:01 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Another feeding tube question
What happens when he got out of the hospital? Did he return to eating and drinking? Did he he return to his former baseline or continue a decline?

Pat is right. This is a very delicate topic. Perhaps reading some older posts would give you a range of opinions to consider.

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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 Sep 06, 2011 3:30 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Another feeding tube question
Debry, I hope you and your husband have talked about this prior to these problems. Would you be able to discuss it with him at this point? We have an advance directive, so if we ever face that, I know Frank's wishes. DO search the web and this forum, it may help with your decision.
Gerry

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


Tue Sep 06, 2011 5:37 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Another feeding tube question
Yes, there is a lot of discussion about this on the forum. I'd ask myself this before agreeing to "life saving" interventions such as a feeding tube - are you considering it for your LO, or are you consider doing it for YOU? What is the overall state of health & quality of life of your LO? If your LO could make sound decisions at this point, would he want an invasive procedure given the type of life he currently has and what he will be facing in the near future? Hopefully there is an AD which can guide you, but if not, these questions are really important for you to ask & answer yourself. 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 Sep 06, 2011 7:44 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Another feeding tube question
Debry,

As others have said, hopefully your husband's advance care directive details his views on these matters. Many prepare these documents as part of estate planning. And many discuss these things at the time of diagnosis to a neurodegenerative disorder. If neither of you prepared this directive, you should prepare your own directive right now. (A good starting point is fivewishes.org.)

I think the medical community's prevailing view is *against* feeding tubes for those with dementia. Certainly it depends on quality of life and what the prognosis is in terms of survival time.

A gentleman who was in the advanced stages of AD (bed-ridden, unable to speak, only awake for an hour or so a day) was given a feeding tube. He was the roommate of my father's at a care facility. He repeatedly tried to pull out his feeding tube. They put mittens on his hands so that he couldn't do this. Putting the gentleman on hospice made more sense to me than giving him a feeding tube.

When I hear "hospitalization twice in 6 weeks due to UTI/dehydration," my first thought is also hospice.

A feeding tube might address the dehydration problem. It will not address the UTI problem. (Have you discussed prophylactic use of antibiotics with the MD?)

I think emedicine.com has a good explanation of feeding tubes. A lot of the Yahoo!Groups have good discussions of the practical aspects of feeding tubes. You have to know if you are planning on bolus feedings several times a day or slow pump feedings overnight. You have to be educated in how to do the bolus feedings and use the pump. You have to know about clearing clogs (inevitable) and avoiding clogs. You need to consider what you'd do if the tube feedings resulted in watery stools. (Would this be a reason for facility placement?) Know what you are getting in to before you walk down that path!

Robin


Wed Sep 07, 2011 10:50 pm
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Joined: Wed Mar 02, 2011 1:11 pm
Posts: 27
Location: Michigan
Post Re: Another feeding tube question
Thanks for the input. We're going with the feeding tube. It's not an end-of-life issue with him at this point, it's getting him through the bumps. I discovered after I posted that a friend had gone through the same process with her father, and they found it a real blessing.

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Wife of a 60-year-old LBD patient who was diagnosed in 2003.


Thu Sep 08, 2011 3:52 pm
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