Has anyone any advice on a PEG? My husband is aspirating on all food and drink and has been for the last 18 months and 4 chest infections.

[denmob]

He has been told he would not be having any food at all. He is not losing weight as he eats well, albeit coughing during eating and drinking. A big decision to make!

[carolinesimmons]

My husband has been on a JPEG for 2 yrs. but he recently started being able to eat some soft foods. Before making the decision for a PEG, try him on a diet of soft foods like yogurt, apple sauce, pudding, mashed potatoes and gravy, etc. It may be that he can tolerate these soft foods better than a regular diet.

Caroline

[denmob in reply to carolinesimmons]

Thank you for replying so quickly. My husband eats much of what you suggest except yoghurt which is why it is such a difficult decision. In the last two years we have adapted his diet to be mostly moist soft texture foods and as long as herbs and spices are used he has enjoyed them. We reduce coughing with me feeding him but he I doesn't always allow me to do so. He is strongly independent and wants to retain this. I'm worried a JPEG will make he feel there is nothing left for him as food is and always been important to him. We are also concerned about the practicalities of it all as well as the impact on his quality of life. He is also on blood thinning medication to avoid further blood clots on the lungs so the op is also not without its risks.

[carolinesimmons in reply to denmob]

I just wanted to explain the difference in PEG and JPEG tubes. The first goes directly into the stomach. The second goes into the jejunum which is on past the stomach. My husband had a 24/7 continuous feed which was awful because it limited his mobility. That was because he had aspirated with the bolus feeding (no pump, just pouring a can of food down the tube). After reading on this site of others who had the pump and were running it at a much higher rate, we did the same. He can no longer get out and the pump is only running during the day. With what he eats plus the pump he maintains his weight. He was also a food person, a great cook and enjoyed his food so much. That was one of the worse things he had to give up. I would not recommend it except as a last resort and only if it was your husband's choice.

His daughter is a chef and she prepared some liverwurst and lebkuchen in such a way that he could eat and enjoy it. Next she is working on steak. But that is a far cry from being able to eat the regular foods. This PSP is simply a progressive taker away of all the pleasures of life. It really hurts to see this happen to someone you love.

I have found that I have become a touchy-feely person because that is something my husband can still enjoy. AND his special treat is a McDonald's chocolate milkshake! I wish you both the best as you struggle with this disease.

Caroline

[mrsfarringdon]

Hi we went through this with dad before he passed away in November, we were all adamant even dad we did not want the peg as we heard so many bad things about it, so speech and language sent the nurse out to see us, after showing what it was all about and discussed everthing we wanted to know I must admit we did have a change of mind but sadly it was to late for my dad. Get in touch with your speech therapist and consultant for more advice they were fantastic with our family.In the mean time try him on complan replacement meals they were great, they one meal in a glass and with them being quite thick dad didn't choke on them x

[shasha]

ALL I KNOW IS THAT I WOULD RATHER DIE THAN GO THROUGH HAVING A PEG - I SAW IN HOSPITAL THE INDIGNITIES OF A DEAR OLD LADY WHO HAD TO BE CHANGED LIKE A BABY AFTER A DIRTY NAPPY - HORRIFIC

[jimandsharynp in reply to shasha]

Sasha, I agree. My sister-in-law was attending a PSP patient on a PEG and said at time the woman would cry out "Die, die, die!" She took it the woman wanted to pass on but PEG was sustaining her. Just a true personal story. Again, it's a tough decision and very personal.

Jimbo

[Robin20]

My dad has psp,and has had à lot of chest infections,the doctors have suggested the peg a few times,but my dad has said no,hé still enjoys food,everything is pût through a blender,and i cant think of anything hé dosent eat,his drinks are thickened also,but hé still enjoys a glass of thickened wine,

[jimandsharynp in reply to Robin20]

Robin, never thought about thickened wine. Wonderful! Jimbo

[groovychick]

My beloved dad who past away in October had to face this. His decision quite early on in the disease was that if I ever get to the stage that I can't eat,drink or enjoy the only pleasure of food which is all he had left really-then his time was up and he didn't want to be kept artificially going. In the end it became irrelevant really as he went downhill so fast after his second bout of pneumonia from aspirating. He was eating so little towards the end and secretion was building up straightaway in his lungs. So glad my dad isn't suffering anymore with this evil PSP hate you so much you took my dad from me.

[Hidden in reply to groovychick]

Dear Groovychick,, I so very much agree with you. PSP took my Dad last Friday and I am so glad he suffers no more and it is all over for him. I hate PSP with a vengeance.

[EB2000]

I beleive that even with PEG fitted, you can still enjoy a little food by mouth as well, but I could be wrong so do check with your professionals XX

[Sky2 in reply to EB2000]

Hi,

I agree with Robin. My dad who has PSP loves his food and a glass of wine. He has had a couple of chest infections and the Doc did mention a PEG and I burst into tears. My dad loves his food and the thought of that was a no no and I know my dad wouldn't want that. We make his drinks really thick and the glass of red wine like Robin does. He has soft food and blended or cut up really small. We feed dad with a small spoon because when he was doing it himself he put too much in his mouth. I understand your husband is independent but I would just advise him why you want to feed him so he doesn't have to go down the PEG route. I always find that if I explain why things are being done to my dad in his best interest he is ok with that. Its when he doesn't know what is happening that he doesn't like. I always explain to him to drink slower etc so he doesn't get a chest infection again. Its just that little reminder.

I wish you all the best.

Thanks,

Esther

[carolinesimmons in reply to EB2000]

Yes, my husband has a JPEG and he eats many things that are really soft. He also likes coffee and we have not thickened it yet. He does cough and choke - but I let him have his choice.

[cabbagecottage in reply to EB2000]

Yes my mum did

[Hidden]

Hi Denmob,

My wife had a PEG fitted to her stomach four months ago after it became impossible for her to swallow solids or even liquid nourishment in sufficient quantities and her weight had fallen from 52 ks to 41 ks. It has saved her life; some may ask, for what?

The fact is my wife did not wish to die although she knows that her quality of life will continue to deteriorate and the end will come. The liquid nourishment is fed to her by pump for nine and a half hours every night while she is asleep. This provides her with 1400 kcals. In addition, three times a day I use a syringe to provide water (1 litre per day) and a further 400 kcals to help restore her weight and strength - which is happening. Various mediations such as anti-regurgitation pills, anti-"spasticity" pills and when necessary anti constipation liquid are mixed with the water.

So far, it has all worked very well. Far from interfering with her sleep it seems to have aided it. And my wife is also able to eat normally anything she desires, just for pleasure; in practice at the moment this means purees and softly boiled egg yokes; probably in the summer she will go back to milk shakes and sorbets, etc. If her ability to swallow returns sufficiently for six months, the PEG can be removed.

You may find this an odd thing to say but our big challenge, now that it is no longer necessary to spend literally 6-8 hours a day trying to eat enough normally, is to find stimulating things to do to fill the time! Bearing in mind that my wife can no longer talk, read or write. But we are working on it...

Good luck to you both, Barnacle.

[carolinesimmons in reply to Hidden]

Very interesting! My husband prefers his JPEG feedings during the day so he can roll around easily and comfortably at night. To each his own!!!

[jimandsharynp]

PEG is a personal choice. What are the patients wishes? Is there end of life documents the patient has made? If you have these they should direct your path for the patient. Another question. I'm not sure if once installed the PEG can be removed. You may want to check on that. I've read pro and con on PEGs on this site. Check past posts on the topic. My wife has PSP and does not want a PEG ever. She doesn't want to have no sight, speech, mobility, and be kept alive via PEG. Others cherish the extra time with the loved one even though their condition is bad in quality. Remember, a patient can aspirate on their own saliva which the PEG doesn't eliminate. At least that's what I've heard. Bless you! Jimbo

[carolinesimmons in reply to jimandsharynp]

Yes a PEG can be removed. That's the easy part. And, yes, saliva can be a BIG problem. We have scope patches to deal with that. I believe in England they use drops.

[jimandsharynp in reply to carolinesimmons]

My question about PEG removal was not medically, I know that is possible. I was questioning if the doctor/neurologist would allow removal since it would be keeping the patient alive.

Jimbo

[carolinesimmons in reply to jimandsharynp]

In the US that was decided some years ago by a very high profile case, Terry somebody. I feel very badly that I can't remember her name. But, yes, the courts decided that the husband could stop the feeding tube against the parents wishes. He thought that would be his wife's wishes.

[groovychick]

Jimbo-that's what happened to dad. The saliva secretions were building up so quickly as swallowing became so poor and he got his third and final bout of pneumonia and overnight he went. Like a firework.

[jimandsharynp in reply to groovychick]

Groovychick, thanks for the contribution and information.

[Robin20]

Sky your dad sounds so much like my dad,we always explain why and what we are doing,my dad has lost his speech now,and its very hard to communicate with him,hé uses thumbs up to say its okay for something,enjoy your wine jimbo.

[laroux]

Hi

My hubby has been on a peg tube for 11 months, he had lost so much weight his life was on the line. It took him hours to eat, burnt more energy trying to eat than nutrition gained. He had the choice to live or die, he wasn't ready to give up, so chose the peg. He still eats a little pureed food, just to please the palate. His weight has increased almost back to normal. He only has two feeds per day, one in the morning and one in the afternoon, takes about an hour to run a feed. He is on gravity feed, not a pump. He also drinks ensure through a straw, it is quite thick, and is considered a meal replacement. For him, this was the right choice, because the disease wasn't in late stages and the choice was on him, not someone advocating for him. He gets his meds through the tube as well. Other than having to stay put while on the feed for an hour twice a day, everything else is the same, except he didn't die of starvation! It's a personal preference really, and I think it depends on where one is with the disease. Hope this helps.

joan

[denmob]

Thank you all for your replies. We are lucky that my husband is not losing weight, he is still a fine 16stone. He does know and understand things so is able to make the decisions he wants to make. He asked to see your comments and so he has. I think there has been a very wide and varied response including pros and cons. Our sons are coming home this weekend for a family discussion but the final decision is my husband's. I just am afraid of the psychological impact and that it might progress the disease but again the final decision must be his. Thank you all again, it does help hearing views of peoples living with PSP, we see things that others don't.

[MelvynS]

Hi. Just a few thoughts on the fitting of a PEG,which my brother-in-law has now had for over two years. He had it provided privately when he was coughing so badly, and had suffered one bout of aspirational pneumonia. Originally, he was pump-fed during the night but after about a year he started bringing up the feed quite frequently and that caused terrible bouts of coughing during the night. So we reduced the voluime of the feed (we think in retrospect that the body was saying that it was being overfed, but also he would slip down during the night and wasn't sufficiently upright for the feed to remain in his stomach. So, up it came, with distressing results.). So he is now fed, only about three quarters of the original prescription, during the day whe he is sitting up in a chair. He was later moved off the pump feed onto bolus feeding (slowly, from a syringe) as it could be done a little faster than the pump and in-between walks out in his wheelchair). He is certainly getting much more peaceful nights, particularly since being placed in the "recovery position" at night so any excesss saliva can dribble out of his mouth rather than go down his throat. From a practical point-of-view I believe there is no reason why you could not handle the challenge of organising it yourselves in the home. The initial teach-in from the representative of the liquid food company seemed a bit daunting at first, setting up the pump each night and so on, but it very quickly became second nature for my sister and me. I think the crucial issue is, if you start, when you stop. My brother-in-law has become increasingly unaware of his surroundings and less responsive. We no longer know whether he has any quality-of-life at all, and we question ourselves whether hs is being kept alive on PEG feeding longer than he would ever have wanted. The only positives we have are that occasionally he smiles and seems to respond facially to things going on around him, and seems to be in absolutely no pain. If that situation changes I think we will seriously have to consider discontinuing the feed and allowing him to gradually slip away. This is something you should discuss before going ahead, in my view. Stopping a PEG feed seems to be a great deal more difficult a decision that starting it in the first place. All best wishes. Melvyn

[denmob in reply to MelvynS]

You have given us a lot to think about. People's comments have been helpful and informative. It may seems insular but it has been a shock to find so many people using the peg, we seem to live in a bubble of our own PSP experience. Thank goodness for this site.

[dadaroo]

Hi denmob, it has been about 2 months we put a peg tube for my father, he kept aspirating on his solid , thickened water. My father is bedridden and one of the most important thing that we have to do to keep his bed head up more than 45 degrees. he needs to be on his back to get fed. we flush with 60 cc of water before and after. Also about 1 hour after feeding he needs to be in this position. I do not know what is your husband's situation, if it is the same as my father then these needs to be followed strictly. Now we go to the kind of formula he is taking. we have tried probably 4 different and he seemed to be doing okay with this one which is isosource HN 1.2. I did a lot of research but one thing for sure is not one formula is good for all, you need to arrive at that. And a very good nutritionist or a dietian should be able to find the cause of the coughing or give you an idea. Also, I found out by accident that what the limit of my father's stomach is and I took that into consideration of figuring out what form of tube feeding should he get, be it continuous, bolus feeding or gravity. we are using a pump to feed him 3 times 250 ml at a slow rate of 125 ml/ hour which would be somewhere between bolus and gravity feeding. So, I do not know all the ins and out. But I hope this helps you see where you need to make a change till his situation is resolved.

With all my heart. dadaroo

[dadaroo]

Hi denmob, I am sorry, I went on and on about all my experience that I now realized that your husband is not on a peg. For us there was no other way to feed him. I sometimes wonder if we should have made this decision sooner. I think caroline simmons has a good suggestion. What I wrote to you before can tell you about peg and its problems. But for my dad I think we should have put him on peg sooner so he would not have lost so much weight.

Any question you have about what I wrote please let know.

dadaroo

[jimandsharynp]

I think the most important point in discussing PEG or no PEG are two things

1. Patient's wishes if the are known or they can express them.

2. If decision by others important to ask why are we making this choice? Meaning is it a purely selfish reason or the best choice. We may want to keep the loved one with us for personal reasons but that is not a good basis for the decision in my view.

Jimbo