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 Aspiration pnuemonia: Do we need a feeding tube? 
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Aspiration pnuemonia: Do we need a feeding tube?
Dear friends,

I've been out of touch since July, and now I need to get back into the loving arms of this forum.Wow, where do I begin?

End of July I went to Toronto (from Italy) to spend a month's vacation there to be with Dad. My Dad is 85 years old and is in the advanced stages of LBD living in a nursing home. My sister lives nearby and does the best she can.

As soon as I saw him, I noticed he was coughing a little bit. I told his MD who prescribed antibiotics and he improved a little bit. One night, mid-July we received a call from the nursing home that he was in respiratory distress and we took him to ER via ambulance. He had pneumonia and fluid in his lungs (they say probably caused by aspiration).

At that point, I spent the rest of the vacation (2 weeks) in the hospital with Dad. He was really in bad shape: very poor breathing and not sleeping at night. I gave the ER and later the ward nurses and doctors the list of the NO-NO meds for LBDA and of course, due to the infection in his lungs, he had become extremely agitated and couldn't sleep. The hospital provided us with sitters 24 hours a day to watch and make sure he didn't crawl out of bed, etc...

Cut a long story short, fortunately he survived the pnuemonia and was sent back to nursing home. I decided to stay on with him in Toronto, abandoning our business in Italy (my husband went back to take care of things). I was with Dad all day, every day until October 6th when I had taken care of all issues and came back to Italy.

His usual neurologist (wonderful expert) told us right away that he is now entering the stage of swallowing difficulties. She told us that if we intend to use a feeding tube, we should consider doing that sooner rather than later.

Speech pathologists (several of them) all agreed that he is still swallowing ok, but with hesitation and difficulty. The video fluoroscope (barium swallow test) was not conclusive because his swallowing was extremely slow. His food was downgraded to all pureed foods, and liquids thickened to honey consistency. Furthermore, he needs to be spoon-fed (his coordination is too far gone to feed himself).

At the nursing home, the regular staff feed the residents who need them, but since they keep changing the shifts and new staff comes in, we decided to get a private PSW (personal service worker), the same one who takes Dad for an hours' supervised walk everyday, to feed him as well, following our very detailed and specific instructions.Turned out she was hardly every there, and was delegating the feeding to her friends who had very little knowledge about the proper feed techniques. So we fired her, and decided to rely on the nursing home staff for the feeding. I wrote up specific instructions and emailed them to the director of nursing who promised to hand them out to all the staff. Now, we're hiring a PSW through an accredited agency to at least take Dad for a supervised walk for an hour a day, just to make sure he gets some exercise.

Throughout his rapid decline and the pneumonia ordeal, Dad has been the sweetest most adorable person, as he always was all his life. He never complained even when he was literally suffocating. He would always say that he was sorry for all the trouble he was causing everyone. We tried not to be sad or crying in front of him but it was really difficult to watch him suffer. Dad took everything bravely, and with such determination to get better.

We decided to hold off on the feeding tube and to try to set up his feeding regimen in the safest way possible to avoid aspiration pneumonia and choking as much as we can. We figured that there is always a risk of aspiration of saliva anyway even with a feeding tube. He does enjoy his food so much and it is the only physical pleasure left for him.

However, we all know that sometime soon, we might have to decided about the feeding tube. At this point I would like to ask if anyone has had similar experiences regarding the problems of feeding and risks of aspiration pneuomonia. I would be really interested to know of experiences and advice regarding feeding tubes and whether they do actually help. Dad has great appetite and he takes double portions of everything and eats everything willingly. So the issue is not that he refuses to eat. It would be mainly to lower the risk of aspiration pneumonia. So any advice would be helpful. Another concern with the feeding tube is that he may pull it out at night or during one of his restless periods. At the hospital he was always trying to pull out the IV line. Do LBD sufferers tolerate the feeding tube generally, or do many of them pull it out or disologe it?

Sorry this was so long. Nothing is more soothing to my nervous and worried mind than sharing our LBD ordeals with my dear friends on this forum and eagerly awaiting their responses.

Peace and light,
SS (Shomy)
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Thu Nov 05, 2009 7:17 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Shomy,
What are your father's written wishes with regard to a feeding tube?
Robin


Thu Nov 05, 2009 10:17 am
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
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Hi Robin,
Good to hear from you. I hope you are well, healthy and happy.
Shortly after the onset of Dad's symptoms and way before we had a diagnosis, Dad asked my sister and I to be his POA's. We never actually discussed end of life issues with Dad mostly because at the time he seemed to be suffering from depression and we didn't want to make things worse by bringing up sad issues. We kept minimizing the situation for him and tried to keep up the semblance of a normal life filled with hope and comfort.
However, I know my Dad and his personality. He is a fighter and loves life, even now. Also, and more significantly, he is a medical doctor and surgeon. I know form past discussions regarding other people that he is a great believer in medical intervention and taking advantage of all the medical knowledge and technology available.
When the issue came up a few weeks ago, I sat him down and explained to him that he is having difficulty swallowing and that's what caused the pneumonia. I asked what he thought and felt about a feeding tube which might reduce this risk. I had a really hard time that day to get thru to him because he was in an inattentive phase. So I tried again the next day, which was better.
His response was that we should do exactly what the doctors recommend and trust their judgement. And when I said that the choice was up to us, at first he said that we should do the feeding tube, and then he said that my sister and I should decide for him. I am not sure I can rely on his cognition enough to be sure that his answer actually reflects his thinking. His speech and attention are severely impaired at this point and it is very difficult getting a reliable answer out of him. Although, he recognizes all of us and has appropriate behavior and appropriate emotional responses most of the time. However, at this point, complicated issues such as the feeding tube are probably beyond the scope of his attention and decision-making faculties.

Shomy


Thu Nov 05, 2009 10:38 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Shomy,

Then you should proceed according to your father's verbal wishes -- do what the MD advised and get the feeding tube now.

Robin


Thu Nov 05, 2009 10:59 am
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
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Thank you Robin.
Before we go ahead with the feeding tube, I just want to know if you or anybody else has any insights into pros and cons of feeding tube, specifically in LBD patients...
Any complications?
How much do they really help?
How much are they tolerated by the patient?
Even the MD and the neurologist say that survival rate after the feeding tube is usually no more than 6 months. I can't figure out why. Many people advise against it and even say that it accelerates the decline.
I can't rely on Dad's verbal wishes, because I cannot be certain that he is cognitively capable of making this decision. How can I be sure that that's what he really wants?
And more importantly how can I be sure that a feeding tube will help and not hurt the situation?
I would love to hear about experiences with feeding tubes and survival rates.
Thank you so much for being there.
Shomy.


Thu Nov 05, 2009 11:07 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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There is absolutely no guarantee that your father will be neurologically the same before and after the feeding tube placement. It is unknown whether your father's quality of life will improve, remain the same, or deteriorate after a feeding tube placement. Aspiration pneumonia can still occur in those with a feeding tube (eg, they can aspirate their saliva). There is no way to know if your father will live one month after a feeding tube or six months after a feeding tube or two years after a feeding tube.

I don't think anyone here dealing with LBD has feeding tube experience. There are at least 2 people on LBDcaregivers whose LOs currently have a feeding tube or had one in the past.


Thu Nov 05, 2009 11:49 am
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Joined: Thu Aug 30, 2007 6:15 pm
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Location: Charlotte, NC
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Wow! This is a tough one. I guess it is a lesson for all of us to get advance directives signed when we can still understand what we are doing. My LO signed one in 1996...even before we were married. Now I am so glad that he did. He has dysphagia and according to his written directive I will comply with his wishes and not administer any artificial means of extending his life, i.e. a feeding tube. So sad for me, but good for him.


Thu Nov 05, 2009 2:56 pm
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Joined: Sat Jul 19, 2008 10:29 am
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Location: Italy and Toronto (Canada)
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It sure is a tough dilemma for us!
What's puzzling me is that there are such few LBD sufferers who have opted for the feeding tube.
I suppose many of them had left written directives in their living will to avoid the feeding tube.
But still, because aspiration pneumonia is a very common cause of death, why is the feeding tube not used more frequently to minimize at least this one particular risk?
SS


Fri Nov 06, 2009 7:38 am
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Joined: Sat Jan 31, 2009 7:21 pm
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Location: Ohio
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IMHO, this is a huge quality of life decision. From a professional & personal perspective, I can tell you that it's very complicated because even tho' you may extend life, you must ask yourself at what emotional & financial cost. A beloved aunt in my family lived 8 years longer with a feeding tube after being mostly unconsious for 5 years prior with dx of Alzheimer's. She was also a diabetic. Being a childless couple, it was very hard on my uncle, a very caring & loving spouse who cared for her at home for many years. Their suffering was painful to family who regularly visited & provided. He admitted that placing the feeding tube was not the right decision for them. All I can add is that this is a rough call to make especially since it sounds as tho' your father has deferred to you & your sister. If I've learned nothing else in this community, I've learned how important it is to make end of life decisions early on before they become so difficult. Dee


Fri Nov 06, 2009 9:42 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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I suggest you read "Hard Choices for Living People" to familiarize yourself with the decision. The booklet's author definitely has a point of view (ie, those with dementia shouldn't get feeding tubes) but if you can get past that it is somewhat informative. (See hardchoices.com)


Fri Nov 06, 2009 12:28 pm
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Joined: Sat Jan 27, 2007 8:38 pm
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Location: CA
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Shomy --
The reason so many do not opt for the feeding tube is that the tube prolongs the inevitable and usually the months/years on the tube occur during the final stages that are most difficult for the LO and caregiver.

Luckily for me, Jerome's advanced directive made it clear he did not want any artificial means used to prolong his life -- and that is all a feeding tube will do ... presumably prolong life through artificial means.

As you may know from your reading, a large number of LBD patients die as the result of pneumonia or other infection -- the dementia, per se, is not what kills the patient. The feeding tube decreases the probability of pneumonia from meal aspiration.

I would venture to say that the decision to put the tube in is NOT the most difficult decision you will make ... once the tube is in the tough decision will become whether/when/if to have it removed.

I think it would be important for you and your family to discuss, BEFORE putting the feeding tube in, what -- if anything -- would lead you to later have it removed.

In our situation, I am eternally grateful that pneumonia ended Jerome's life just as he was starting to experience the beginning of the end ... that he did not have to bear the Lewy cross through the cruel final stage.

I would urge you, whatever your decision regarding the tube, to look into putting your father under hospice care now. It seems he would certainly qualify and he would get compassionate care as well as palliative care.

Good luck and let us know what you decide.

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Renata (and Jerome-in-Heaven)


Sun Nov 08, 2009 12:36 am
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Joined: Sat Jan 31, 2009 7:21 pm
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Location: Ohio
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Not sure the feeding tube could be removed once it's in place. Which of course would complicate the issue further. Hospice, the alternative sounds so much more sensible. Dee


Sun Nov 08, 2009 9:05 am
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Location: SF Bay Area (Northern CA)
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A feeding tube can be removed. Usually what happens, however, is that feeding through the tube is stopped.


Sun Nov 08, 2009 12:06 pm
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Joined: Wed Oct 08, 2008 10:30 pm
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Location: Henderson, Nv.
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SS- Such tough decisions for the caregivers. I agree with all here, this is why the advanced care directives are so important to have signed while one is in good health. I don't envy the position you are in and will say a prayer that you have the strength to deal with all of this.

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Dianne C.


Sun Nov 08, 2009 4:02 pm
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Joined: Fri Feb 29, 2008 7:02 am
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Location: MI
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My Mother has chosen not to have a feeding tube (or other things) she also loves food -eats very little now- I wouldn't take away from her the enjoyment she gets when she does want something
it really is a quality of life issue
my .02 worth
Sharon

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syt


Mon Nov 09, 2009 12:20 am
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