My Father in Law has PSP but because he had Neuropathic problems previously we do not know how long he had it before he was told he also has PSP. Is there a way of knowing what stage of the illness he is at.
At the last meeting with the specialist he recommend and that he had a PEG fitted. I have a few concerns about this and wondered what other sufferers/carers think.
I am worried about him having an anesthetic at his age (80) and also the risk of infection from the PEG itself. Does he need to be lying flat when the PEP is in use.If he is lying flat it casuses him to cough and choke. Thank you in advance for your replies.
Written by
capsey31
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To answer your specific concerns - insertion of a PEG is a fairly minor procedure and would only require a light anaesthetic. As with all "foreign bodies" introduced to the human body and operation sites there is a small risk of infection both in the site wound and as a result of having an opening directly into the body. The risk can be minimised with scrupulous attention to hand hygiene from anyone dealing with the PEG.
It is ESSENTIAL that he is NOT lying flat when the PEG is running. Anyone with a PEG should be nursed at angle of no less than 30 degrees while the feed is running to avoid the risk of aspiration.
Other things to consider are that the feed is liquid going in and, therefore, tends to be fairly liquid coming out!! The feed runs through fairly slowly and, therefore, usually runs overnight to avoid the need for the patient to be hooked up to a machine all day - if your father-in-law is at all restless and fidgety or confused there is a small risk that he might pull the PEG out.
Whatever happens, the specialist suggesting the procedure should give you all the pro's and con's so that you can make an informed decision.
Generally speaking, there seem to be 2 trains of thought regarding whether or not to have a PEG - people seem to be either for or against it and if you read back through some previous posts you will find a lot of emotive language is used. Only you and your family can say whether your father-in-law would want to be artificially fed.
I hope you are able to find the information you need.
That was put in such a sympathetic and clear way. Thank you Kathy.
Those on this forum with loved ones who have a PEG will have the necessary experience to guide you. As far as I know the PEG is not usually used lying down, but with approx.30 degree angle of the head or sitting up. If used under strict conditions infections should not occur.
However, there had been extensive debate about whether PEG provides any useful place in PSP (or similar) during the end stages. Sufferers can still have lung aspiration from saliva, and hence end up with pneumonia. (Some health professionals advise against PEG if one has excessive coughing).
Some PSP carers find PEG a real help with their loved ones in gaining weight and being generally "healthier". Many, however, find that it does not delay progression of the disease and just prolongs the inevitable. For all these conflicting reasons, it is difficult to know the right answer about whether to have a PEG or not.
The other problem for your father in law being 80 and having anaesthesia would be the well documented fact that it usually anaesthesia increases the progression of PSP.
Is you father in law able to discuss this matter and make a decision with all the family? It will be most difficult for all of you, so I wish you all the best.
With respect to knowing the stage of PSP, many on this forum are familiar with the fact that staging is difficult because of the individual nature of the disease. Also, many would prefer not to consider stages but just take every day as it comes and enjoy as much as life as possible, and not worry about stages. However, for medical intervention reasons, some like to know how PSP progresses. To be forewarned is to be forearmed.
If you are still interested in stages please have a look back at some of the answers on this forum.
(Not knowing your father in laws other symptoms apart from coughing and choking and being recommended for PEG, it will be somewhat of a guess about how far the PSP has progressed. However, looking back at your previous blogs about his condition, it seems he is towards the latter stage and the other neurlogical problems you mention will only add to his position. His age is also a factor)
When my Dad could communicate with us we asked him if he wanted a PEG fitted. He said NO and also signed a directive to confirm this!! It was devastating for us to see him fade away and struggle to even sip a glass of water, but it was his wish, and we respected that. Unfortunately he aspirated on 19th April.
Capsey, What I'm going to say is my opinion. Be sure that if you go with a PEG it can be removed later by a directive of the patient or the person with health care authority (in your family). There are a few thoughts on using a PEG. Some people are for it. Others say it prolongs the persons life when they are captive in their body without ability to talk, see, etc. My wife and I have had that discussion while she is still able to talk and understand. I explained that with the PEG she might be kept alive beyond when she would like to "let go". Her health care directive provides for NO "special" things be done to prolong her life. However I felt it necessary to discuss the PEG (or other feeding methods) with her now.
As far as the stages of PSP it is my feeling that because the disease can be different in each patient and even progress differently in each patient it really isn't possible to determine the stage. There are, a list of five stages I've seen but I quickly discarded them from my thought process. Here's my thinking on PSP....
Why worry about what stage you are in or even what is coming next? My thoughts are to take one day at a time, enjoy it for what it is, and express your love to your patient. Often too much time is spent on PSP, it's stages, what's next, etc. and the patient sort of gets lost in all of it. My wife and I are thankful for each day and are not looking too far ahead. We aren't worried about what comes next and will have time for that when it comes. We aren't trying to predict how much time is left by tagging each day with a "stage". We aren't interested in "stages".
Anyway that's my thoughts, good or bad for what it's worth.
I couldn't have put it better myself!! PSP is such an unpredictable condition at the best of times and whatever "stage" you are in there is nothing you can do to alter that so "one day at a time" is absolutely the best way to deal with it!
Hi Capsey - my name is Danielle and my dad suffered with PSP for about 10yrs. I have been away from the site for a while but was poking around today and saw your post. Our nuerologist had told us that fitting a PEG is really not a medical decision but a personal one. Fitting a PEG is really minor and frankly it is no big deal - -and it doesn't take long. The doctor had told me that they have fitted PEGs on "way more sicker people" when my dad had his fitted. In our case my father had orginally decided not to have a PEG but changed his mind when he was hungry but could no longer get adaquetly fed by mouth - so we started supplementing dad with the tube and eventually he was fully fed by PEG. We had not had any problems with the tube or any infections and he had his for 13 months before he passed. Again -it is more of a personal choice that has to be respteced either way.
Having a feeding tube is a great way to get meds in to them and avoid the swallowing. My mother has a G tube and we do feeding with formula and all meds are through it. We blend the meds in the magic bullet, cheaper then getting them compounded and they do the same thing.
Many PSP patients don't want a tube. My mom was mon verbal when the time came. It was my fathers choice to get it done.
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