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It snuck up on us - virtually no symptoms until 2AM Monday morning, shaking, fever, high blood pressure. Today, he had a swallow study. They recommended a peg tube for feeding and informed us that he was aspirating when he ate. We hate to remove the feature of food in his life. He is 90, weak, and mentally unable to understand the change in body that feeding would bring. Any suggestions, warnings, words of wisdom are much needed and appreciated. We want Dad home with Mom, more time please!

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TG, make sure you get a speech therapist evaluation of dad's swallowing. He may need thickened liquids and/or a modified diet, going forward. Good luck!
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BarbBrooklyn,
Thank you for your ongoing kindness. It is so appreciated - I physically relax and breathe and smile a bit whenever I read your words to me as well as your posts to others. Kindness is the supreme medicine.
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Shane1124,
Thanks for the words of advice. We are currently working with the palliative team and social worker at this hospital to build a comprehensive plan for future decisions and events. However, Dad had NO symptoms this time, so they bit about chest X-ray by primary would not have applied. It may very well apply next time, so that you for bringing that up.
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It’s very hard to see our parents get ill.  You & your dad and family should use this experience to begin planning for future episodes where tough decisions need to be made.

So many elderly folk pass with no guidelines, ie Advanced Directives for one. Your father may be ready to discuss AD for himself after this close call.

My mom never wanted to talk about her “end” so when she passed I was grateful that I had a sibling who thought the same as me. My other sibling was a jerk. 

Make those decisions now while everyone can discuss and agree on the guidelines should your dad get terminally ill. 

Also, remember that aspiration pneumonia often returns, as the person continues to aspirate small amounts daily. Undetected, the fluid just builds up and an exacerbation occurs. 

Sit him way up (90 degrees) when he eats/drinks, thicken his fluids to nectar consistency & feed him in small amounts. Look for education handouts for Patients & Families suffferkbg with aspiration pneumonia episodes. Ask his ICU doc for care guidelines. 

Discuss treatment of recurrent aspiration pneumonia with your father’s PCP to develop an action plan with your family/dad’s caregivers so that next time your father develops symptoms (SOB, coughing, fever), the PCP can give the patient/family a standing order for a chest X-ray for definitive diagnosis & then treat at home if necessary. He can avoid a hospitalization and hospitals are not necessarily the safest place to be. Does your dad use inhalers or nebulizers? 

But again, aspiration pneumonia most likely progresses to frequent bouts of respiratory infections. Being vigilant & proactive helps everyone in a crisis & prolong a life. 
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Gator, that is wonderful news! I'm so glad.
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Dad is doing better. We transferred him to a major hospital. In addition to pneumonia, he tested positive for the flu yesterday. However, he is "feeling better". He was moved to the floor today, out of ICU. He said, "I thought I wasn't going to make it. It looks like I'm going to live. Thank you." He has slept a lot today now that he is out of ICU. He has no fever. We are all hopeful that our time together will be longer.
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Yes Gator, how was the day? Anything improve or decline, Hope this works out for him & you!
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Gator, how is Dad today?
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jeannegibbs

Thank you. I think Veronica91 meant well, no pun intended,
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Tggator, a couple of years ago, i spent a very dark night in a hospital room with my mom on a breathing machine. She went septic after a bout of aspiration pneumonia. I would not have made it through that night, or the following three years without the folks on this board.

This is hard, hard stuff, and my heart goes out to you and your family. I hope that dad pulls though and gets to have some more good times.

Let us know how you're doing. We care. Don't You forget to eat!
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I"m sitting in the dark in the ICU room with Dad. My sister, brother and I have been alternating sitting with him. Somehow, a decision to transfer him to a larger town, to continue his care, including a peg tube has come about. It's all so surreal now. Just last Sunday, we filled up the truck, picking up pinecones, and now we're in the dark, me recording private thoughts with strangers - he lying in an inflatable bed, without his wife adjusting to a temporary feeding tube that has just been inserted to take the place of some of the most enjoyable pleasures of his life - "water", milk, meals with the family, the loving preparation time. What are we doing? You justify it - "He wants to spend more time with his wife - they truly do have the most tender marriage, but at what cost - further complications. My name is listed first on the advance care directive. Sitting by his bedside this afternoon, he said to me, "I thought I was going to die. I didn't know what I was going to do." That's the closest I've ever gotten to hearing his wishes concerning extending life.
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My husband had a bleeding ulcer early in his dementia journey. A feeding tube was suggested. He rejected it and I supported his decisions (knowing it was a life-long attitude and not just due to the dementia.) The speech pathology who explained the process to us and listed all the benefits was a very young woman. She did a good job, but my husband's answer was still "no thanks." She left the room and came back with some dietary suggestions. She had tears in her eyes. She said, softly, "I wish my grandfather had the decision you did."
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Zam it is still true that MANY TIMES patients have the option of going home to die. Veronica did not say Patients ALWAYS have the option. I'm sorry that your case was one that did not suggest that option.
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Veronica91

I was commenting on your last few words. about "many times patients are taken home when death becomes imminent" My mom did not have that choice to pass at home  or hospital. They subtly suggested she would not make it home, even though it was not a long ride. She passed in hospital ICU. She had no more PEG feeding, yet the GI doc still "visited" up to the day she passed and billed insurance for those "visits".
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Zam I don't understand your post. All I did was lay out the family options for their loved one. if they want him to die in hospital that can easily be arranged in ICU or another part of the hospital.
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I'm so sorry your father is going through this, tggator. Ask to see if he is going to improve before considering a PEG. Do research on it as well, Chances are he would be fitted with an automatic feeding one, and not one where he would be doing it himself. There is a difference between the 2.
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Veronica91
Not necessarily. Some hospitals will subtly suggest that the loved one receive final care in the ICU. They don't want to be liable if the loved one passes before going home.
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This is always a difficult decision to make. Do you know what Dad would want? Does he have an advance directive or DNA order. There has to be a separated DNA for hospital use. He clearly would not understand what he is signing. Would Mom be prepared to sign it?
From what you have written he sounds as though he is comming to the end of his life as CM suggested.
I am assuming they are treating the pneumonia with IV antibionics, has there been any improvement? if not i would wait on placing a PEG tube because at the end of life artificial feeding will simply put a greater strain on the body. Someone can live without food for far longer than they can without water. Fliuds are being supplied with the IV so there is no concern about dehydration. His condition will not be made worse by holding off on the PEG for a few days.
If you really want him to go home this could be arranged with hospice care. Hospice would not recommend an IV at home although caregivers can be trained and IV antibiotics continued.
A dying loved one with a pre existing PEG tube will continue to be fed BUT they will slowly become unable to process the feed and it will be stopped at that point.
If you decide to take dad home it will not be something that Mom can manage alone. Other family members will have to be there the whole time. can the family arrange that or afford outside caregivers? This is a huge undertaking and not to be undertaken lightly but you can take a few days to work things out. In that time it will be clearer if Dad is showing signs of recovery. he does not have to stay in the hospital to die if the family has a strong desire to have him die at home. many times patients are taken home when death becomes imminent.
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When you say, we want Dad home with Mom...

Who's that coming from, mainly? I mean, naturally the family would like Dad to recover and go home, of course. But I'm wondering if the main reason for prolonging your father's life is that your mother can't bear to let him go? How is she coping, overall?

Your father is in ICU and has been since Monday. I hate to be doing the warnings part, but I think I might be concentrating on helping mother prepare herself, just in case; and hold off on the PEG feeding decision until there was a little more clarity about how your father is likely to get on. Has there been improvement in his condition otherwise?
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Personally I wouldn't do it. Everything I've read about feeding tubes tells me they are wonderful in temporary situations like Jeannegibbs described or for those people who are able to live a fairly active life and can manage their own care, but with terminal illness and dementia they most often lower quality of life and statistically add very little extra time. ICU staff are focused on aggressive, life saving measures and surgeons tend to see surgical solutions but here may be other options, at the very least trying a modified dysphagia diet - pureed foods, thickened fluids and special attention at meal times. I also know that aspiration pneumonia and eating difficulties are common near the end of life for people with advanced dementia, my own mom is living in a nursing home and for her the order is that she is not transported to hospital.
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Feeding tubes are awesome devices. Tube feeding kept my brother's strength up while he was recovering from throat cancer. (He eats normally, now.)

But at age 90? With dementia? Nope. I wouldn't do it. It doesn't eliminate the risk of aspirating -- we can aspirate on our own saliva. And very often with dementia the person keeps trying to take it out (not understanding what it is) and winds up being restrained. Bad situation.

BUT that is MY attitude. Do you know what your father's feelings are, or were before the dementia?
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So sorry for you both

Tggator
Do you know your dad's wishes on these types of measures?
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I was surprised by the same problem as you. Took Dad to the Dr. because he had a chest cold. Dr told us it wasn't pneumonia, it was a virus and would take some time to clear up. A few days later, took him to emergency and he had aspiration pneumonia. This was all mixed in with a UTI.  Be sure they checked him for that too.  The next day they informed us he had gone septic and was not responding. Dad refused a feeding tube, and also IV nutrition. I was shocked when they told us there were no other options, and they recommended palliative care.
I hope they find a way to help you and your father. Tomorrow will mark 1 year since he passed, and I still struggle with it.
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