PEG Tube

Well it if official. My man has to make a decision on whether to do a peg tube or die. The urologist told me this morning that he is dehydrated. If he will not drink more fluids because of throat hurting/he is aspirating, he will die. He has signed a paper with hospice that he does not want a peg tube. I told him that he has to make that decision, I will not. He still has all of his mind, and he knows exactly what is going on.

The neurologist doctor did a knowledge test on him last Wednesday. He passed with flying colors. Even counting backwards from 100 by 7's.

The only question he failed is, he did not remember the current president of the U.S. name.

I will stand by his decision, no mater what it is. But, I cannot bring myself to tell him to get the peg tube or not. I have already started contacting the family.

62 Replies

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  • Oh, mthteach

    This must be hard for you.

    My thoughts are with you.

    Warmly

    Kevin

  • i agree k

    ol jilll

    x

  • Beyond difficult!

    Im soooo sorry

    Sending a huge hug x

  • Thinking of you at this difficult time and sending my love....

    Pat xx

  • I am sending as much strength across the ether, as I can spare. Don't think we are that far, from the same dilemma. I don't know the answer either.

    You are in all our thoughts, what ever decision your husband makes, it is the right one for him. May who ever you pray to, gives you the strength to carry out his wishes.

    Lots of love

    Heady

  • I am sending you all my love, thinking of you at this difficult time. It is hard isn't it, George was really poorly a while ago, we thought it was time to make a decision peg our no peg, George decided he did not want it, but his health picked up, so did not have to go through what you are, I felt like I was letting George down, could not make the decision myself, if it was me I would not want the peg. Hard sad time saying a prayer for you Yvonne xxxxx

  • What a terrible decision to have to make and I know as we have been there but C was way beyond talking or answering question. He did, however put his thumb up when the doctor asked him if he wanted the PEG so I went with his decision. Only today I told a friend he would have left me 3 months ago without the PEG. On the worse days I wonder if the decision was correct and then on the good days I'm pleased we did it.

    You can only go by what your man wants and whatever the outcome, you know you have obeyed his wishes and done the best for him you can.

    Praying you will know peace whatever the outcome and that he is comfortable and pain free.

    With love and prayers.

    X

  • Thinking of you at this difficult time. Lots of love, Nanny857 xx

  • My heart goes out to you, teach. I admire your resolution. Of course you are right to let him choose.

    I am afraid we are fast approaching that point, too, but my sweetheart is also losing his ability to communicate, and if he could communicate freely I'm sure he would not pass a test of cognition. When he filled out the living will 2 years ago he said he would refuse a PEG - IF he could not otherwise make his wishes known. I am his interpreter. It is going to come down to me.

    But but but...this morning he asked me where his shotgun is. He couldn't say why he was asking.

    It scared me.

  • mthteach, I am so sorry it has come to this. I went through this a couple of weeks back. My husband also signed a living will that clearly stated his preferences NOT to have a peg put in. Unlike your husband he can only communicate with a thumbs up/down like Nanna's husband.This disease is so random in its progression from one individual to the next. He clearly has his wits about him though and I admire your resolve to honor his wishes. My husband could drink but was choking more and losing his appetite rapidly. We went with letting nature takes it's course and like Yvonneand george his health has improved and his appetite has increased.That being said we have begun a treatment that might work for you. One of my husband's doctors has chemo patients who are dehydrated and have vitamin deficiencies. He gives IV treatments tailored to the individual. I even have them as stress has reduced my food consumption. We go together so he does not feel like it is an intervention and we both come away hydrated and healthier. The B12 in mine (I'm deficient) gives me an incredible perk!

    Also know it is stating the obvious but using thickened liquids was a game changer for us. And not the kind you thicken yourself-though I still do that occasionally out. There is a food service company-Hormel Medical that sell pre thickened beverages that taste so much better! The lemon water and icetea are his favorites.I buy quart bottles by the cases. You can order nectar or honey consistency. I also order individual cartons of thickened milk and protein shakes. They also carry nutrient dense pre made meals.The ice cream cups (recommended by a nutritionist in the hospital) are also a hit. When she first recommended Hormel all I could think of was Spam! You are in the states right? Shipping is free and the frozen items arrive on dried ice. Stay strong and keep us posted. Huge hugs & love.

    Jayne GC

    P.S. To Easterncedar. You need to get the gun out of the house. I went through the same thing with my husband. I do not know enough about how to handle a gun but I had a friend come by who took the bullets out (he kept it loaded under the bed!), and stored it in the closet. a few weeks later we remove it from the premises. It is not so much that he will hurt himself (though that would be horrible), there is a real chance you could be injured as well. I am sure his grip, eyesight and coordination are not what they used to be. Not trying to scare you just keep you safe.

  • It has been 2-3 weeks since I notice something was wrong with his urine. I thought he had a UTI also. I kept complaining to his family and doctors that he kept wanting to sleep all the time. He never wanted to get up. He tried 3 times to sneak back to the bedroom this morning when I was getting ready to go to the urologist. He did not want to go. Maybe he knew what they were going to say. I think that I have been in denial because, I thought that I had at least 3-4 years left. The doctors said 7-9 years expectancy. He has had it for about 4 that we know about.

    Every time he drinks something, his throat hurts so bad. When he eats he has gurgling in his chest/mouth. The hospice nurse brought a suction machine just the other day.

    I do not believe in not giving a person a feeding tube if needed to sustain life. But, if his quality life is as bad as I have read or heard, I do not think that I would want to live my last years like that. I am so torn on whether to take over or let his wishes be carried out. Maybe, just maybe, I can keep him drinking a little more.

    Thank you all for your advice and prayers. It is a very scary place to be in.

  • Good for you, mt! For once in a very long time I'm sure, your husband has been allowed to have some control over his body as PSP eats away at the rest ! Death is not an easy road , but it is an inevitable one, whether it be in 10 weeks or 10 decades, we must all walk that walk. it sounds like he has come to terms with his future and is willing to go down that road with as few disruptive curves as possible...

    Good for him.

    May you both find peace with his decision......

    AVB

    By the way B has had a Peg for 6 months now.....He told me early on that he wanted a feeding tube.....so when the time came it was just a decision being implemented ..

    as for me and my body, I say no to the PeG and any other body prolonger...

    This world is not my home, I can't wait to get to heaven!:)

  • I say no as well AVB.

    X

  • My prayers are with you and your husband at this time. I am humbled by your strength.

    Hugs, Christine

  • It's great you are respecting his wishes - best wishes

  • We initially fought against the peg but Dad has just had a bout of Pneumonia from aspirating. He has been unable to talk or communicate his wishes to us for some time so we have had to make the desicion for him. We see in his eyes that he wants to live and Mum says that after nearly 60 years together she knows that he would want. It's heartbreaking. We are told without the Peg it is just a matter of time until he aspirates again and this would be followed by palliative care. They say that the peg will at least allow him some quality time were he can watch films & TV go out in the garden in his wheel chair and out and about etc. Your husband should make his own mind up. Wish my Dad could. We are tortured. There is no miracle. Love to you both x

  • Let him make his choice. My mom did not have the chance to choose And I couldn't let her go and made decision to put PEG but what we are facing now is more difficult to watch 😔 I wish I would have chosen not to put but it is too late .. We made her live but this is not a life...

    Make him choose how to live the rest of his life and stand strong by him...You are lucky he can make it for you...

    I wish the best for you

    Big hugs from İstanbul / Turkey

  • This is exactly where we find ourselves also at the moment - my husband has always said "no" to a peg tube but about 6 weeks ago he choked on some food and it must have taken 2 weeks for it to properly clear. After Daily Dr visits saying he could just try another 24 hours before they had to hospitalise him - eventually it appeared to clear.

    But ever since he is making this horrible noise in his throat and eating less and less - so we discussed this with the palliative care consultant and Paul has now said he wants a peg fitted. I think he is too tired to fight.

    I / we were frightened that this would artificially prolong Paul's life, and this has been a major stumbling block - but we were surprised when the consultant wrote out a directive that means Paul can signal he no longer wants the peg to be used when the time comes (Paul hardly speaks just uses his thumb); but if he can't communicate at all then I can say stop all nourishment . We hadn't realised that this was an option.

    Horrible times ...

  • I have written several times about peg feeding . My husband had a PEG fitted about six months before he died. I think those last six months were better because he was properly fed. It gave him more independence , he made the choice and it relieved us both of the stress of trying to eat 'normally'. He still had a few bits and pieces, chocolate, bananas, for pleasure but with the support of the nutritionist he maintained a reasonable weight and some semblance of normal life. I could not have watched him die of starvation.

  • Kathryn, It is so very hard for me to watch him like this. I would do the PEG tube. I have no choice but to honor his wishes. His mother and sister said that I should honor his wishes. God knows I wish that he would drink or eat.

  • My mum was like that fro three years made huge difference in her case

  • My thoughts are with you at this testing time. I'm sure you are right to let him decide. He sounds much sharper than my husband !

    Its a terrible time.

    love and hugs, Jean x

  • My husband has refused the peg treatment and I have to stand by his decision. At the moment he is having trouble with eating but like your husband he still has his mind and knows exactly what he is doing. Best of luck xxxx

  • This is probably a stupid question, but are you thickening his drinks. As your man is still walking alone, talking and able to do tests, it seems very early for his throat muscles to give up. I know everyone is different but I've never heard of anyone saying it hurts when they swallow either. He doesn't have a throat infection as well does he?

    My hubby had thickened drinks and soft, then liquidised food for over two years before he needed a PEG. As I said, everyone is different but it was a thought that came into my head as I was under the shower.

    X

  • Yes NannaB, that was in the back of my mind too . Maybe it is not PSP related.

    MT, have you taken your husband to the ENT- Ear Nose and Throat Dr?

    You might have a swallow study done on him by a speech pathologist.

    This study x-rays his swallowing ....making a video if you will of what his Epiglottis is doing.... i think Utube has a movie.

    Anyway it shows if the epiglottis shuts off the glottis

    epiglottis (the flap that lays over the glottis when swallowing)

    glottis (the opening to the trachea that allows air into the lungs )

    You might ask for the swallow study.

    Your husbands decision is still his decision but his problem may not warrant a PEG tube....just thinkin'

    AVB...and... NannaB

    We girls been through it!...

  • abirke, we did a swallow study about a year ago. They showed he was aspirating when he drinks liquids. Thank you for your thoughts and prayers. It has been a God send to have found this support group for me. You guys have been my life line through it all. Thank you for your prayers and support.

  • oh boy and that was a year ago.....well darlin, what can I say...I'm gonna say it , stay strong.....it'll be alright......I wanna slap me for that phrase...stay strong BSSSSS! I can't help it ...but I want you to know there is no guilt no no 2d guessing; it is what it is ...the road will be traveled.

    Sending you as big a hug full of as much consoling as I can give.....

    Your sister in PSP

    AVB

  • We sure have AVB

    X

  • NannaB, he has said from the get go that his throat was hurting. We have gone to a local ENT and was referred to an ENT in Birmingham. Neither doctor can find anything wrong with his throat. We do not know what to do anymore. He did have a swallow test, and it showed he was aspirating when he drinks. He has had the disease for 4 years that we have known about.

    He has given up. He will not eat much or drink. He had a glass of french toast for breakfast and a bottle of water. He will not eat or drink anything else. He will not even get out of bed.

    He has been like this for about 2-3 weeks. He does not want to eat or get out of bed. The most he would eat is 2 meals/glasses of meal, and a glass of water each meal. I cannot get him to eat or drink anything else. The last couple of days he has done the same thing not wanting anything at all.

    Thank you for your support. Deb

  • His decision is the right one for him. I had a dear aunt who refused nutrition after a stroke and died at home, with her family, resolute and at peace. We would have tried to keep her, but I so admire her determination. It was exactly as she wanted. May we all be so fortunate.

  • My wife has had a PEG for 18 months so far, initially it dramatically improved her quality of life for over a year but this has now been outweighed by the theft of her faculties by PSP progression. I know she understands the world about her but cannot interact except with a smile or a hand squeeze, she is a prisoner of her body. As a nurse she understood the PEG issues and decided she wanted the PEG as she was very tired of fighting the swallow for months and did not want to go. The PEG allowed us a good extra year but PSP is now in charge and the PEG only prolongs things.

    You are right to let your husband decide on the PEG. It will be very hard to watch the struggle, do not let the doctors over ride his decision. Hold his hand and show him you love him.

    My prayers and support for you and your family. Tim

  • Tim, does your wife still want to PEG in? I wonder if she might have changed her mind.

  • Yes, as she knows she cannot swallow (choking is very common) but she still is not wanting to give up life even though to me her quality of life is poor so the PEG is essential.

    Thanks Tim

  • Thinking of you xx

  • It's really very difficult but yes, their minds are still good, and they should make the decision. As part of our advance care planning, the Nurses have gone through with hubby the questions about the Peg etc, and he decided that he'll go with the Peg when the time comes. Either way, it would be difficult for us carer. Thoughts with you.

  • Desperately sad as it is, it is a gift to you that he is able to make his own decision, taking that terrible burden of choice from you.

    As he is still of sound mind could you give him the gift of seeing some of the people he would love to see while he can still enjoy their company a hit? Maybe if old friends could pop in for a minute or two it would be a pleasant distraction for you both.

    Thinking of you both at this difficult time.

  • Finoni, he had an old friend in today from where he was working. It was a good thing the man came. He was able to get my husband to take a few sips of water and take a pain pill. He kept moaning and would not take a pain pill from me. His friend will come back tomorrow.

    Thank you for your thoughts and prayers.

  • I can hear how hard it is for you to respect his wishes. I admire that you are still doing so.

    Stay strong. My thoughts are with you.

    love, Jean x

  • My mother eats only thickened liquids and pureed food. We have to feed her water and food by the spoonful. I think the PEG could be very uncomfortable.

  • If his mind is still all there by all means get the peg tube I know at first its scary thing but I am so glad we Got my Aunt Bev the peg tube. If you go to you tube and watch a video it explains it so much clearer even though my Aunt has the tube she still drinks with thickin in it and still can taste food just not big amounts. It helps with taking her medicine and she has a boost with fiber for protine. The doc will explain it like he can never have anything in his mouth again and that is not true.

    Good luck and lots of hugs

    Kryste

  • Well actually B cannot no longer swallow without him choking explosively.....I try to give him a taste and either he does not want it or it's just too hard...I'm glad your auntie can still swallow a bit....

  • I talk to her when I give her a sip I say ok swollow or some times she will try to hold it in her mouth it seems she remembers how to swollow when I mention it to her

  • Have you tried Thick In

  • Kryste, we have been using simply thick for about a year.

    His throat pain is so bad he hates to swallow.

  • kryste, he and his family have said no to the peg tube. There is nothing that I can do. He signed a living will about 3 weeks ago that said no peg tube.

  • sorry to here that you are in my prayers

  • Yes Kryst, it's the same here. C has developed a very sweet tooth so as well as the PEG feed, he can manage the "naughty" individual puds you can buy eg chocolate mousse, ice cream. He has tablets with yoghurt. Now I walk round the supermarket looking for the most calorific puddings....only for him of course!

    X

  • Is a sweet tooth part of the illness? My husband seems to have developed a sweet tooth also. Hope your not hungover

    Love Debbie xx

  • Hi Debbie, yes it certainly seemly that way! Whether it's comfort eating or something changes, I don't know. S always took forever to eat a sweet, now it's wolfed down!

    Lots of love

    Heady

  • Apparently as the sense of taste is dulled by the disease, as all sensory inputs may be, sweetness is powerful enough to get through for a time, so it is very common for a sweet tooth to appear. It has helped to keep the weight on my guy, and he gets a lot of pleasure from his treats, so I think it's a very good thing!

  • Not hungover, just tired from a very late night/early morning and this time it wasn't my darling causing it. Totally my own fault.

    I think it is the alterations in the brain that changes the taste sensation. My mum, who had Alzheimer's, would spit tea and coffee out if it had sugar in it. With Alzheimer's she wouldn't drink it unless it had 3 spoons of sugar in. Weird!

    X

  • Me too! Sucks, doesnt it!!!!

    Lots of love

    Heady

  • Oh sure...he still has to swallow two pills as they are time released and cannot be crushed....oh he's calling

    AVB

  • Good morning to you I am sorry but it's like you said they mostly know what is going on so hard tho sending prayers for you and your hubby. Nettie

  • I am so sorry you are having to go through this phase. My sister decided a long time ago that she wanted a Peg, where I wasn't so sure that would be the right decision. However, it is her decision and I will abide by that. I did go over the pros and cons of each and she still wanted to use the Peg tube. To be honest, if I was in the same situation, I don't know which way I would go. It is an extremely hard place to be. I feel for you and my prayers go out to both of you at this difficult time.

  • This is one area that my father was very clear on and relayed this to his consultant so clearly despite not having said much for some time. I cried at the time but some of those tears were due to his clarity and what this then laid out for the future, I also stood firmly by his decision NOT to have the peg in place. I feel your pain but with hindsight I really do believe this was right for dad and that it would only have served to prolong the inevitable not only for us but for dad who was going through the PSP journey. I wish you all the very best xxxx

  • Dear mthteach,

    My husband Charles is a nurse. He doesn't want one, we have a directive and I have POA. It is a sad way but it's his decision.

    I'm in the same boat. Charles' brain is fine.

    Cuttercat

  • I understand what a huge decision it is - I just recently lost my dear husband due to him not eating/drinking and so aspirated but was ever so hard to see him like that - he too refused the PEG and we the family abided by his wishes - PSP does take away all there dignity at this stage but because he too had lost his ability to speak and even to put his thumb up etc - and yet by his eyes I was able to understand him - I sincerely wish you strength/courage at this crucial time and know it happens for the best. Peace and hugs from one who has gone through this.

  • 1009luck, how long did your spouse have PSP? How old was he? My husband has had it for 4 years, and he is 62.

    I am able to get about 2 glasses of water down him a day. I do not think that will sustain him, but that with some food twice a day might not be bad.

    He is forgetting how to eat/ drink from a straw. I have to sit and tell him how to do everything.

    Last night I could not handle the pain he was in. Hospice came in at midnight and gave him some morphine. I cry when he is in pain. I feel so weak to help him die.

  • My husband had a peg tube inserted 14 months ago and has done quite well with it. He cannot swallow and has aspirated on his own saliva. It was urgent that it be done and he wanted it. We made several trips to the ER to have the tube replaced and often he was given a temporary(catheter tube)instead of the peg tube for enteral feeding. We are now waiting for the peg tube that fits right to the skin instead of a tube hanging down. Unfortunately He did get pneumonia and had to be ventilated. He has been in the ICU for 10days and the ventilator has been removed.He is waiting for a room on the floor. Hoping he will come home soon. My husband has asked for all treatment to keep him alive. It is even no to the DNR. He no longer talks even the hand signals are difficult. He has become more rigid and difficult to move but his mind is still there. He watches what is going on around him including TV, music, being outside in the summer air.He doesn't show signs of pain but l am sure it is there especially when his forehead creases in a frown

    He was diagnosed six years ago and I am sure there will be more trips to the hospital because he can't breathe. The peg has given him more than another year to live and he has been content and accepting the quality of life it has given him. There will be more choices to make and it woN't be easy. I could not bear to send him to a nursing home. Thanks to all of you who contribute to this site. Most of wnat I know about PSP I learned here.

  • How's it going MT?

  • abirke, thank you for your love and support. The PEG tube was out of my control. I would have taken care of my husband for many years with one. He wanted not part of that. It is very hard to carry out another person's wished when that happens. I just broke my heart. I have written another post about what has happened. Love, Deb

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