I am faced with a dilemma.Don had a feeding tube installed 2 weeks ago after aspirating and being intubated.Now he has successfully come off the vent and is eating pureed foods,soon to progress to soft foods.He is in a long term acute care specialty hospital.
The speech therapist spoke about leaving the feeding tube in in case of future need of it.Now the Dr is talking about taking it out.Don't know what to do.
I'm sorry you are faced with this dilemma. I suppose the crux of the matter is whether you think his quality of life is sufficient to justify these measures. I do not think the medical staff here would have recommended intubation, or even treating pneumonia with antibiotics, if at any time over the past year we had been in that situation, and I would have agreed; now I am afraid I would give anything to have him back, just for another day, although it would be cruel to make him endure more than he already had to suffer. You will have to follow your own heart in making this decision, but please know that whatever side you come down on, it will be the right choice. Love, Ec
Ec I am fortunate that when we first went to the emergency room with breathing problems they asked HIM if he would wish to be intubated if it came to that, and he said yes.Up until that time he was able to walk although due to all his problems we were pretty much confined to home.After a week in hospital he was stabilized and released to rehab where he aspirated the next day and was intubated. When the doctors wanted to put in the feeding tube 2 days later,he was conscious enough to agree to it himself.Since then he has made enough progress to come off the vent and is eating pureed food on his own.He will be able to again make the decision whether to take it out but I can help sway that decision if need be,I just don't know what is "right",I know in my heart there is no right or wrong.I above all don't want him to suffer.
I love this group, you all are talking about all things that go thru my head cause I don't know who can talk so honest about such things. My husband has not walked in two years.Thank You All
Hi ALL! Just joined the group. My husband, Kent, age 59, was diagnosed with atypical parkinson's, with probable CBD, PSP, and/or underlying Dementia with Lewy Body Sept of 2014.
He needs help with all daily living activities. He has dystonia in his neck and no use of right hand and very little use of left hand. We're considering botox treatment at Stanford for his Dystonia and constant drooling. He also has a constant runny nose. He makes "crying" sounds daily, but can't articulate whats going on. My biggest concern is that at random times he "holds his breath" sometimes to the point of turning bright red and makes "choking sounds" that are so frightening. The Stanford pulmonologist says the breath holding is either from his vocal chords abnormally closing or his brain stem, breathing control center, is malfunctioning. She wants an ENT specialist to do an endoscopy and check his vocal chords and is suggesting a possible tracheotomy. In the mean time, she wants him on a trilogy ventilator. She says he's high risk for aspirating, and also suggested us to think about a feeding tube. In December 2016, a swallow study test indicated his swallowing was fine. Having a hard time processing all of this info. Kent's communication is limited, but after we left Stanford, he said to his brother and I "Save Me!" We recently took him off of Nuplazid. We saw limited benefit; the side effects were worse...leg swelling, extreme constipation, and more confusion. Currently he takes sinemet 3x a day, which it does help a little, and aricept 1x a day.
I have read in very rare cases sinemet and aricept can cause breathing problems, but the doctors say they have never heard of this.
If any of your loved ones have experienced any of the above, I would so appreciate any input or suggestions!
Very Grateful for this forum and all of you!
Michele
Michelle-my husbad has many of those same symptoms.He has the constant runny nose and has saliva in his mouth that he cannot swallow.He makes a "moaning"sound when he breathes out-the nurses are constantly asking him if he is in pain and he says not.He also holds his breath(like sleep apnea,which he also has)but while he is awake.The symptoms with this disease go on and on and just when you think you have adapted to them something else crops up.
The best advice I can give is to take one day at a time and don't forget to take care of yourself! God Bless!
Thank you Jan for the reply. My husband also has sleep apnea, but like your husband, he holds his breath while he is awake too. He also says he is not in pain when making the crying sounds. What do you do when he is holding his breath? I'm thinking of getting an oxygen reading meter to put on his finger to make sure his oxygen is not at a dangerous level. Are you doing anything regarding his constant runny nose or saliva?
When I realize he is holding his breath,I tell him to breathe-sometimes he does and sometimes he doesn't.I think he really can't control it.It is like all the other things he can't control-there is a disconnect between the brain and the things that make all the body parts do what they are supposed to do.We have an oxygen meter and his oxygen level always checks normal(better than mine).
For the runny nose and saliva he has for years been taking glycopryylate.Now he has been in the hospital for over a months and one of the doctors treating him took him off of it.He was a urologist's PA and I guess he thought he knew better than the neurologist who prescribed it.I am in the process now of trying to get him back on it-maybe even an increased dosage because it is not as effective as it used to be.Also while in hospital he has been using a hand held suction wand like the dentist uses to suction your mouth.It really helps a lot and I have looked them up online and am going to get him one to use at home when he gets out.
That is my same experience with my husband's breath holding. And its interesting that his oxygen level was a 100% at the pulmonologist appt. but yet she has a trilogy ventilator being delivered this week. So sorry your husband has been in the hospital for over a month! That's a long time for the both of you. Thanks for the great information! Hope you hubby gets home soon. Thank you for the response!
I don't have any experience with a trilogy ventilator-yet.His pulmonologist told me back when he first went in the hospital to make sure they ordered one for home when he gets out.What they have him on in the hosp at night is a bipap machine(he was using a c-pap at home for yrs.
I have wondered what to do if or when this happens it really is tough to know what is right. Years before CBD we both talked about a DNR Medical we both said no feeding tube or life support we did not want to be a vegetable but now I still say for myself don't want it but for my husband now ?....💐🌸🌺🥀🌼
JantheNana, you are so fortunate that Don is allowed to also take food by mouth, and apparently no longer using the PEG (feeding tube).
My son, 55 years old, had one installed AFTER a second bout of aspiration pneumonia. He was told he could have NOTHING by mouth, no water, no meds, no food.....ONLY through the PEG, And that aspiration pneumonia could return with swallowing his own saliva.
He died 5 weeks after the PEG had been installed. He, who had been very regular in his elimination, started to have 4 days or more without elimination (constipation). This required prune juice, Miralax, and suppository to address the problem. He continued to lose weight, though fed every 2 hours.
Most choices, no matter what I chose, I found myself second guessing. I agree with easterncedar. There is NO correct answer, only what you can live with.
What does Don want??????
So far,Don wants to take whatever measures will allow him to regain his strength and come home.Now that he is back to breathing and eating his main problem is that he is so weak from being in bed so long. Thanks to you and to easterncedar for your insight into this dilemma! Because of both your answers I will try not to second guess myself.
Good....I am in a grief group. Today was our second meeting. We discussed GUILT. It was very good.
Where is the meeting? I am sure I need it.
Hi Christine47, when I send you an email from my hotmail account it tells me It can't be delivered, something on your side is preventing it from being received.
I think I told you that my son died.....May 4, 2017, at his home. His health insurance and mine is Kaiser Permanente. His was through COVERED CALIFORNIA, mine was through my retirement plan.
It is only open to those insured by Kaiser. It meets once a week for 8 weeks. Each meeting is 90 minutes. Today the discussion led to "guilt". I have found the two meetings very helpful.
How are you and your husband doing?
So sorry about your son he was still so young. What age was he diagnosed? Have a blessed day
I wrote a post called PARKINSON'S TO PSP. It tells the entire story. He was DX with PD, Jan 2015. His first symptoms appreared March of 2014. Jan 4, 2017 he was DX with PSP and given 3-5 years to live. March 23rd he came down with his 2nd bout of aspiration pneumonia and sepsis, and put in the hospital for 7 days without food, on only an IV filled with antibiotics. He kept failing the swallowing test and talked into having a PEG installed. It totally changed the situation. He died 5 weeks later.
He was 52, about to turn 53, when the first symptoms arose. He was born in 1962. Between those first symptoms and his death he lasted 3 years.
So young. Sounds like it got bad fast. I'm so sorry for your loss. Chip has been diagnosed about 3 yrs well for one yr. Parkinson's to which medication did not help him. Thank you for the information.
That's so so young RIP poor man. 3yrs. Maybe I'm being optimistic, but I was told recently he has 1 to 3yrs. I see the a big difference from this time last year. But still think is in early stages. Hope he had a peacufull death not too traumatic.
My husband was 56 when he died; diagnosed in March , '13; died March '17...one bout of pneumonia...strong, healthy...ie his organs ....even his legs if he could use them....thought processes mostly good but speech so affected no longer could tell you what he was thinking....
AVB
Well said, though I am sorry for your experiences and subsequent loss.
My wife had her feeding tube in place for almost 2 years. The first few months we rarely used it and mostly continued to take in food orally. But as her swallowing worsened, we started to depend more on the PEG. It truly was a lifesaver. She also has a uncle who had a PEG inserted about a year ago, because he was having swallowing issues due to a different neurological condition. But he has since improved and recently had his PEG removed. Both the insertion and removal appear to be fairly simple outpatient procedures these days, so it's probably nothing to get too overworked up over. If he really doesn't think he will need it in the near future, I'm sure it can be a nuisance dangling from the belly area. But if you think it won't be long before he will need it (this PSP disease moves fast), then it might be wise to keep it. I'm sure you'll make the right decision.
Ketchupman
Thanks so much! I am still weighing all the pros and cons and all info is appreciated.
Ketchupman, you once wrote to me giving me good advice on PSP. My son had just gotten his DX of PSP. His first symptoms were DX in Jan of 2015 (appearing in March of 2014). You shared with me that your wife died at the age of 54. My son died at the age of 54.
When did your wife's symptoms first appear? How long after the first symptoms did she die?
My son was told that he was NOT to take anything (water, food, meds) by mouth only thro the PEG. I think that's what hastened his death.
I thought that without the PEG we would have been going in and out of aspiration pneumonia every 3-4 months until he succumbed to pneumonia. His life became miserable after the PEG. He continued to lose weight...even though being fed every 2 hours. Constipation set in, where before he was pretty regular.
She was about 48 when the first symptoms started showing. At age 49 she was dx with Parkinson's. And then a year later with PSP (March 2012). She got her PEG in August 2014 and passed on July 9, 2016. She was 55 days shy of turning 55. Probably the first couple of months, we used the PEG about once a day, but didn't totally depend on it. But soon, it was apparent it was absolutely necessary, as she was constantly chocking on anything she ate or drank. And usually her nose would start running, which to me was a sign she cut off her airway. Others on this site have stated their love ones do the same thing (runny noses during meals .. and watery eyes). Although the eyes often watered due to the lack of blinking. Finally when we were pretty much totally dependent on the PEG, I would just give her an occasional Hershey's Kiss as a treat. And I gave her "Thick It" Water almost until the end. Kim pretty much maintained her weight after getting the PEG, but was definitely losing weight fast prior to receiving it. Constipation was a major problem. I tried lots of things to get her to go. Sometimes it would be almost 2 weeks before she would have a bowel movement. But when she went, she really went.
Thank you. My son's eyes did NOT water nor his nose run.
How many bouts of aspiration pneumonia did your wife have and was she hospitalized or allowed to be home with antibiotics? My son had two. Nov 2016 came out of very well, but not hospitalized. March 23rd hospitalized with Pneumonia and sepsis, 7 days on an IV with only antibiotics, no food. The beginning of the end, and yet when they put him in the hospital he walked with a walker (I would get him up each day to walk) and could still basically talk. Even when he came home his voice was still able to communicate. As the days went by he could only communicate with hand gestures. He was practically blind, but would listen to his music tapes and audio stories on a battery operated CD.
Don't forget once the PEG was installed my son was NEVER allowed to have anything through his mouth again. He developed a fungus in his mouth, back near his throat. I was given an ointment to rub against it with a a lollipop type of help. My poor son.
Perhaps if I had encouraged my son more, he would have lasted more months.
The nurse got upset that Jeff had gone 4 days without a BM, and told me I was to give him prune juice the next morn's feeding, and then at the second feeding give him miralax and if he still hadn't had a BM to give him a suppository. I was very ambivalent and against my better judgment I did that. The suppository was given to him at 3pm whereupon he STOPPED urinating (never a problem before). The night caregiver (she was fantastic) at about 11PM told me that my son had started pooping and peeing...lots. The next morning, Monday, my son declined to eat (should I have encouraged him to be fed? A tough question)....Tuesday Kaiser hospice told me to stop all liquids to him which I did on Wednesday. He died on Thursday. The only GOOD thing was that he was very peaceful from Monday on when he was stopped being fed. I never gave him Ativan or rmorphine. He was given a Tylenol suppository on Tuesday and Wed for fever. He slept a great deal. I asked a few times if he wanted to be fed, but I was not at all encouraging when he said NO.
Kaiser hospice told me that with a PEG it's more difficult to know when the body is shutting down as PEG is fed on schedule.
I'm not sure how many bouts of pneumonia my wife had. Several over her last 3-4 years. Between that and really bad UTI's, they were often hard to diagnose due to her poor communications. She rarely complained. Often ran a temp even when everything else checked out OK. And often the O2 was lower than normal, and her heart rate was higher than normal. So when all of them were out of whack at one time, I definitely knew something was going awry. I checked everything multiple times each day. I even had my own urine test strips, since it was difficult to get hospice to take tests when I suspected she had a UTI brewing. And I had my own Litman stethoscope to listen to the lungs. Unfortunately the week she passed, her right lung was already so clogged and so little air was flowing through it, I couldn't hear anything, nor could the hospice nurse, the ER doc, and even the pulmonary doc. It wasn't until they did the chest Xray that they saw the major infection and felt that antibiotics would most likely not be able to address it. She stayed in the hospital for 4 days until she gently passed. We withheld her PEG feeding and all fluids. They did give her the Ativan and morphine, which I think probably sped things up. It was so hard to give consent to and to witness. To see my precious Kim lying there and not a thing I could do to save her. But I know she's with our Lord and Savior and we'll all be together again some day.
Thank you. This exchange on the PEG has helped me put things in better perspective. I was talking to my daughter yesterday. She and my son are only 15 months apart. She was sharing with me that when he was sent home from the hospital (she was here visiting at the time) that she felt his days were numbered. HIs chest was soooo congested. When she went home she researched the codes that kaiser had used and there was NO hope in those codes.
It does give me peace that he had such a peaceful last few days. From my perspective he was in such good health up to Nov, 2016. Then after his second bout of pneumonia, March 23, 2017, after the PEG, he rapidly deteriorated. My daughter said it made her happy that he tried to help himself by having the PEG installed. He knew he had done all that he could.
Thank you ketchupman for sharing.I feel that my time to experience something similar with my beloved may be coming soon.I am trying to prepare myself.
God bless you and restore your strength may he send you much happiness. Love Jenny
Can your husband make the decision?
Yes,he can,but after talking to the Dr today it sounds like they won't be willing to leave it in anyway because he is successfully eating.
Yes
When my husband got a feeding tube , it was because he choked on EVERYTHING. If your husband can still swallow ie eat, you might ask the dr if this site (on his stomach where tube is) can be used in the future if needed. And you might ask speech therapist to do a swallow study to see how much ability he has left by which to swallow...though we certainly their opinion to keep it in....In the end though, I think Cc is right, would his quality of life increase with a tube?
Good luck,
AVB
What does your husband want?
Drooling solution for someone with a feeding tube
Experience of PEG feeding.
PEG tube
Time to regain strength after PEG tube fitting?
Refusal of PEG feeding
