To have a peg or not: Hi , Kathy has got... - PSP Association

PSP Association

8,001 members10,569 posts

To have a peg or not

Birdman34265 profile image

Hi , Kathy has got worse with psp cannot speak ,squeezes my hand for yes and no

Leans to the right when sitting in a chair,does not look at the tv much anymore

She has a catheter fitted, little movement in legs and arms,she is still aware of what's going on,her eating and drinking is slow and often freezes in her movement

I have to feed her myself otherwise she doesn't,we have to discuss about the peg

fitting and if she wants to carry on the way she is, having a peg will extend life

this is a hard choice she has to make.love to all Peter and Kathy

23 Replies

It is a hard choice but as you have said, her choice. My husband chose to have one fitted and it gave him 10 months of greatly improved life but then he chose to stop receiving food and water. He was ready to go, his body was ready to go and he went peacefully, not in pain, also refusing all medication, 11 days later. When he left me I was also at peace, knowing he had been able to make the most important decision of his life, when it should end, and he went when he and his body was ready, not just because he couldn’t swallow any more without choking.

My thoughts and prayers are with you all as she makes this hard decision.

XxxX

Birdman34265 profile image
Birdman34265 in reply to NannaB

Thanks for your kindness ,it's so hard , she's in her 4 year with psp

There are no easy answers to this situation. NannB's reply is very helpful. If you go through previous posts on this same subject you will realise that there are no easy answers. When we faced that decision 3 years ago a junior doctor inserted a feed and I took that as the answer to my prayers. I pray that the right answers will come to you. God bless.

Hi Peter

Great question, often asked, my opinion is no because I regard it as life support

Hoping this doesn’t offend anyone but personally I wouldn’t

Difficult decision x

Hi Peter & Kathy... Decision-making is the most difficult part of life... mainly because we want to know we are making the right choice.

As far as l know Mom was not given the option of a peg... l believe she would have tried the peg... lF it were me, for myself, l would not.

Researching this for Kathy is best thing you can do for her at this time. Sending Hugs of Support... Granni B

Birdman34265 profile image
Birdman34265 in reply to

Thank you!

It's a very personal decision and one we discussed very early on because the Speech Therapist always brought the subject up in those early days. Ben was adamant he didn't want any form of medicine/aid to extend his life and his wishes were carried out. He only agreed to oral antibiotics at home and pain/agitation relief, it was good to know what he wanted and that he had it recorded (with the help of the hospice professionals) a difficult decision that is personal to each sufferer.

Love Kate xx

Thanks Kate

We also took the same path as Kate. Chris was very clear about his wishes.We discussed it at length early on. It was all about quality of life for him. He had sufficient quality until he decided he had had enough. He died very peacefully.

If a peg allows a decent life then its a good idea. By the time it was needed life was pretty poor anyway.

Its a difficult time. You can only do what seems best for her.

Love Jean xx

Thanks Jean,for me it's heart breaking to see her go down hill

Dad, I and once his doctor discussed at length his wishes. He made it clear he didn't want a PEG or any form of life support. It's a hard decision but I feel it's the person's to make, this is their life.

Ron

I think it is an individual decision that people have to decide on. However in my opinion and if it were me I would not in these circumstances have one. The reason I say that is it prolongs life, so when you cant eat you will be artificially fed and for how long, probably past the point that you would have died naturally. As a manager of a nursing home I have seen this and it was so hard. As we approach the end of our lives we naturally stop eating but with a PEG you don't and if your next of kin does not have POA for health and welfare it can be hard to stop feeding someone. I feel everyone has the right to die with dignity and not have their life extended when it is so lacking in quality and can be full of distress. But this is just my opinion x

Birdman34265 profile image
Birdman34265 in reply to kramneb

Thanks for your help

My brother has had PSP for many years, he is now in a nursing home. He has no movement or speech and has decided not to have a peg. It helped that I had POA for both finance and medical as I was able to remind the nursing staff of John's wishes regarding a peg and they accepted it.

It's a tough decision but I believe our loved ones still know their own mind despite being in a body which has given up.

Thinking of you both.

Big hugs

Sue x

Birdman34265 profile image
Birdman34265 in reply to

Thanks for the reply sue ,i have POA over Kathy, but will recheck it

Hi Peter and Kathy, am stunned at your news.

I cannot help as my husband did not have the time or ability to consider peg feeding.

You have some very poignant responses to help you make this difficult decision.

Big hugs to you both.

Jen XXX XXX

Hi Jenny, Kathy has a catheter fitted,she also has urine infection,as i can't get fluids in her fast enough to stop dehydration and flush out

,I thought the peg would allow me to get more fluids in her,she still

communicate through hand squeezes xx

Can you get a nurse to supply IV fluids for a while?

Catheters seem to always be a source of infection. Check whether it needs changing, etc, and antibiotic. Sure you will have done this! My knowledge is purely from posts. Have no experience!

Kathy's urinary tract infection could also be because her system is not being flushed enough due to lack of fluid.

Think that is standard treatment for anyone suffering from dehydration.

Good reason to consider it in this heat!

You may find it helps a little to give frequent sponge baths too.

Thinking of you both.

Big hugs

Jen XXX

Hi Jenny,she been on antibiotics and her urine is still cloudy

If Kathy is still considered to have capability, she can set up an "Advanced Decision to Refuse Treatment", which lists the situations in which she would not want medical intervention - e.g. PEG or nasogastric tube. If not I think you can do this as her POA. Mum has been quite adamant from the start she didn't want a PEG (thank you to those Health professionals who had the courage to bring up this subject on a fairly regular basis) and has kept to that view. It will be hard when we get there but as a family we have always said Quality is more important than Quantity.

Thinking of you both.

Birdman34265 profile image
Birdman34265 in reply to AJK2001

Thank you

Joy of eating is more about having fun with the flavour. The saliva has a probiotic bacteria which helps in digesting the food to prevent diarrhoea sometimes and constipation at other times. Having a peg takes the fun out of eating and is purely a mechanical motion devoid of our emotions. Soon eating transforms into a boring event that had to be gotten over with somehow! That's why peg is a failure with the patient! No participation!

honjen43 profile image
honjen43 in reply to Bhakthan

I agree with you, Bhakthan. But your post is very matter of fact and seems to ignore the emotion that comes with the decision to have/not have a peg fitted.

It is so true that tasting and enjoying what we eat is most of the reason for eating. Is why we enjoy going out for a meal - and why I get fat!

I have read your responses and appreciate your success so far with alternative Indian treatments and that may not have brought you into direct contact with such a decision, should you even consider it.

I am pleased to see you are having some success with turmeric and coconut oil, and reflexology. I hope this will continue. Turmeric and coconut oil are both suggested elsewhere on this site, and the oil was given to my husband to try. Sadly he was not able to give it a long term trial.

Your recipes for reducing phlegm and colds also look like they should be effective, and better than filling the body with more drugs.

Keep commenting! Any success for however long is well worth noting here!

Long may it continue to help your loved one!

Regards

Jen

You may also like...