My Dad is 70 in Hospital, been Nil By Mouth for 5 Days has failed the S A L T test on all accounts.Next step is fed directly by Tube or PEG.

[Honesty37]

He has problems with His Kidneys and also had a Urinary Catheterisation permanently inserted for the rest of his Life. This has taken the whole Family by surprise. We hadn't talked about this beforehand, but after reading comments given by other PSP Sufferers found that some of them did not want to go ahead with this procedure when given the choice. Any Replies would be very much appreciated.

[Kathy]

Hi Honesty,

I'm so sorry you suddenly find yourself faced with this decision. Sadly, as with everything to do with PSP, there are no easy answers. Having a PEG will not "cure" the PSP or necessarily dramatically improve your Dad's condition or quality of life but it will make sure that he is properly nourished. Some people think it just prolongs the inevitable and others think that if it gives them a bit longer to be with their loved one it's worth it. In short, there are as many differing opinions as there are people facing this same decision you are now facing! Do you have any idea at all about what your Dad would think? Is he able to express his wishes, even if only by a nod or shake of the head or a blink of an eye? Has he ever expressed an opinion about being kept alive "artificially"? The Drs should discuss all options with you and give you all the information you need to make an informed decision but I have listed some things to bear in mind.

As with all "invasive" additions to the body (e.g catheters etc) the tube provides a direct route into the body, breaching the body's natural defences and increasing the risk of infection.

The "feed" is pumped in slowly over a period of hours which means the person is "hooked up" to a machine while that is happening - though most people will do that overnight to allow them some freedom during the day.

The pump and bottles of feed can be quite bulky to store.

The "feed" is liquid going in and, therefore, bowel movements are often quite "liquid" coming out!

Having a PEG does not necessarily remove the risk of chest infection completely - (some people aspirate their own saliva) however it will greatly reduce it.

Trust your instincts, you know your Dad better than anyone. I'm sure, between you, you will make the decision that is "right" for you and Dad.

I will be thinking about you!

Take Care

love

Kathy x

[JoJo-K]

Hi Sweetie,

So sorry to hear about your dad. As my mums PSP progressed I would tell her more information about would is likely to happen. When her diet was changed to liquidized over 18 months ago it was then I mentioned and explained about PEG feeding. It wasn't easy but while mums speech was still good I needed to understand her wishes going forward.

We contacted our solicitor to draw up an Advanced Decision document, which a copy is given to anyone providing care to Mum, care home, GP, hospital etc. Mum has refused PEG feeding, does not want to be resuscitated and has also stated that no more than 2 scoops of thickener are to be used in her drinks. This goes against SALT advise, but mum is of sound mind and able to make that decision understanding it could cause aspiration and possible choking etc.

Is your Dad able to voice his wishes or understand the choice of PEG feeding?

I know it's so very hard to discuss with your loved one but my Mum made it quite clear she didn't want any interventions of any kind that would help prolong her life. Another 6 months on from when we first initiated the Advance Decision and Mum can no longer speak, except maybe the odd word, a lot of questions are posed as yes or no answers where she squeezes the hand of whoever is asking her the question. We have now been referred to the Palliative Care Team at the local Hospice as Mums jaw hardly opens wide enough for a teaspoon for eating.

I hope this helps in some small way.

Thinking of you and your lovely Dad

Hugs Jo xxx

[jimandsharynp]

We have discussed it and no PEG feeding for my dear wife. I've heard of cases where the person being PEG fed is just a captive in their body with no ability to respond, eye issues, etc. etc. It may be cruel to impose that on a loved one, I'm not sure. Questions to ask are "If we decide to remove the feeding tube at any point can that be done?" Then if so ask yourself would I have the emotional strength to have it removed later? Most importantly what would your loved one choose? Best to have these conversations early on but even later when they can only respond yes or no you can have it. Their brain can still process information so if you explain the pro and con of a feeding tube to them they could respond with a yes or no.

Jimbo

[wifemo]

Hi Honesty -

Our experience with Tony was that the question of PEG was asked early enough for him to be quite adamant he wouldn't want it. When he went into hospital with a chest infection he was put on the direct nasal tube feeding (plus saline drip for hydration) and once the chest infection was clear was discharged for palliative care. Up to that point he had been at home but after hospital he went into a care home (end-January) as it was not expected he would last long.

My feeling is that there does seem to be a different priority for hospital staff - to treat the symptom which has caused the hospital admission rather than the best way to approach the future needs. Not a criticism but an observation from experience.

In the event the staff at the care home managed to feed Tony suitably softened food and I used to go in to help as it took a long time each meal but he eventually got enough nourishment. This actually lasted until the December but as his swallowing gradually deteriorated, for the last few days he was just being kept hydrated with a drip. Memory of precise details is now fading but I think he may have been hooked up to the drip on and off quite often.

Tony had been permanently catheterised for a year or so which did lead to the occasional infection but our GP here was OK for him to have antibiotics which each time cleared it up straightaway. (At the care home he was assigned to a local GP for that town, who was equally happy to prescribe but I think it only happened once anyway.)

Glad you mention "whole family" as support is vital at this difficult time.

All the best - Mo

[Honesty37]

Hi its be a very emotional time for all the family and Dad since I asked the question. Many Thanks to Kathy, JoJo-k, jimandsharynp and wifemo for all your replies, they were very helpful and put things into perspective. In answer to Kathy's question in particular. I had no idea about what Dad would think, because he had never really expressed an opinion. The Doctors and Staff have been very good at explaining and we as a family have discussed this with him. At first he wanted option 1- to be feed by mouth because the taste of food was his top priority. Option 2 NG tube which we discussed in a way to Dad, as he was still NBM and without it he would starve to death. After a couple of days, Dad changed his mind, He's still aware of his surrounding, understands whats going, listens, says what he feels expresses his opinions, smiles and in a frame of mind to make his own decisions. On that basis the NG was put in and feed him for 16 hours. After this time he couldn't tolerate it anymore, then pulled it out overnight ,they tried to re-insert the NG but Dad was adamant he didn't want it put back. So after further discussions with the Doctor, Dad, Family and other members of the team involved Option 3 The PEG with Dads consent was fitted on the 4th Sept. Operation went okay and has begun liquid feed at 25ml every hour from 10.00 wednesday night. Everything in place and all going well from my point of view, but from Dads side he thinks tomorrow will be another day and Cheese on toast with a cup of tea, meatpotato pie, all the things he can't have anymore. I'm hoping the Hunger feeling will gradually decline the longer the PEG feed has been in. Its good to know someone is a click away at hard times like this. Thanks again x Honesty37 I will be needing your Support, and promise to reply sooner to those who are so helpful on the PSP site x

[deew]

I'm so sorry you and your family are going threw this.

Thinking of you and your family.

Dee in BC

[Honesty37 in reply to deew]

Thank you for the words you speak ,and for just being there deew take care Honesty37