Urgent advice on fitting a PEG: Mum has just... - PSP Association

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Urgent advice on fitting a PEG

Sarah1972 profile image
18 Replies

Mum has just been given the news that she will need to have a PEG Fitted any advice or information would be greatly appreciated thank you for your time everybody

18 Replies
NannaB profile image
NannaB

If you types PEG in the Search PSP space in the heading section on the top right hand side of this page you will find lots of information on PEG fitting. Over the last 3 years I have written lots and I think folk will get fed up with reading the same thing from me. You will get differing views. I will just say that for the last ten months of my husband’s life, he gained weight, never had any sores, never had any chest infections, I was able to take him out whilst being fed and he was able to decide when he had had enough and it was time to leave me by making it clear he no longer wanted to be fed. He had an amazingly peaceful death as he was ready.

I’d go by your mum’s decision even if it is by thumbs up or down or squeezing your hand. I would probably not have let it be fitted if it was left to me but he wanted it so it was up to him. It was the right decision

for him and I have no regrets as the last 10 months of his life were easier for me not having to prepare liquidised food, not having to feed him which could take a very long time and he was never constipated after the PEG was fitted. He could still eat ice cream and yoghurt so enjoy tastes he liked.

I hope your mum can make the decision.

XxxX

Sarah1972 profile image
Sarah1972 in reply to NannaB

This is really helpful NannaB thank you for your time. I will get my reading glasses on tonight xxx

margh2468 profile image
margh2468 in reply to NannaB

Hi NannaB, sounds just like our situation. Leon decided he wanted the PEG. Knowing what I now know, I would not have chosen to have it. Leon lasted 11 months after, he also chose when he had had enough. Sadly for him he couldn't enjoy icecream or anything, as he choked immediately something was put in his mouth. Hugs Marg H

NannaB profile image
NannaB in reply to margh2468

Yes, we are all different aren’t we? My husband wanted to go out regularly and the only time he was bed ridden was when we waited for a hoist for 7 weeks and during the last 11 days of his life. Three weeks before he died we went as a family to Hastings and walked along the sea front, on the pier etc. It was his choice. I’d always ask him if he wanted to go out and his thumb would usually go up. If it did, I’d give him 6 suggestions of his favourite places and then the second time round he’d put his thumb up telling me where he wanted to go. When asked if he was pleased he went, he always indicated yes. Sometimes I would ask him if he wanted to go out, hoping he would say no as the effort was sometimes too much, hoisting into wheelchair, sorting PEG , wheelchair to car etc etc but we always had something to laugh about , which he did in his funny way, so I know he got something from it.

I think I was very fortunate and thank God I had a husband who never lost his love of the outside as it got me out and has left me with very happy memories which now come to me more than the horrors.

I hope you have found life can be good after PSP. Our darlings are always in our thoughts aren’t they. I’ve finally got around to decorating and oh how I missed him, especially when I was on my knees sanding the skirting boards but he taught me well and I think he would be pleased with what I’ve done. Life goes on ❤️.

Thanks for the hug, which I return XxxX

margh2468 profile image
margh2468 in reply to NannaB

That sounds so much like Leon. He loved the outdoors. We were permanent Grey Nomads, on the road for 7 years before I had to settle into permanent house/pet sitting in Howlong. I had gradually narrowed down the places to house/pet sit to a 400 klm radius. Repeat sits and wonderful people and pets. In Albury the medical side of things, rehab, etc were brilliant. One of the families I housesit for insisted we stay permanently with them when it got too much to travel. They are amazing people. I am actually housesitting for them now, whilst they are overseas. The travelling, I think, kept Leon going for as long as he did. It is a wonderful lifestyle and I will continue to travel. Leon's wishes were for me to scatter his ashes in several special places around Australia, I think it was his way of telling me to continue my journey. Life sets us challenges, I had to put my/our Cocker Spaniel, Chad to sleep 6 weeks ago, he was 17yrs. He too had an amazing 8 years of travelling this great country,. Hugs and thoughts Marg H

NannaB profile image
NannaB in reply to margh2468

That sounds wonderful. We didn’t travel around as much as you have although I got the bug more after Colin died and have visited 7 other countries since he died nearly two years ago, including Australia. I had to chuckle as I’m reading your post having just returned from a friend’s house where I have fed and cleaned out their two guinea pigs and two budgies while they are on holiday. I’m sorry about your dear Chad but it sounds as if he had a wonderful life. We were heartbroken when our rescue collieX had to be put to sleep aged nearly 16. It was 4 months before Colin was diagnosed and he seemed to go downhill from then. She was his little shadow. Your house sitting friends sound wonderful, so does your lifestyle. May you continue to enjoy your travels and have many blessings as you fulfil Leon’s wishes.

XxxX

Gadgetgeek profile image
Gadgetgeek

G decided to have a PEG fitted last year in January (2017) having initially been very anti the thought.

There was a slight complication during surgery, which resulted in G getting an infected mouth, which required further surgery to sort out a couple of months later.

Having the PEG enabled her to gain a little weight, and as per NannaB’s account, G didn’t get any bed sores and her skin was completely intact, and no chest infections until the very end.

G still had the occasional mouthful of food, but it did mean that the choking risk was dramatically reduced.

I have no doubt it prolonged her life, but I am of mixed feelings as to whether that was a good thing or not. G’s quality of life last year was more of an existence.

Apologies if this doesn’t help much, I am just saying how it was.

In the end it was G’s choice and I would have stood by whatever she had decided.

Sarah1972 profile image
Sarah1972 in reply to Gadgetgeek

Thank you for this. It’s so valuable to hear. Other people’s opinions xx

racinlady profile image
racinlady in reply to Sarah1972

My husband's PSP has progressed differently than many in that he has not really had choking issues until just recently. His appetite is very poor and we would be more able to control how much food he gets with a PEG, however, I question whether it is wise to prolong someone's life this way when the quality of his life is so poor now. He is completely dependent on others for all of his needs. He has no use of one hand, very little use of the other, can no longer stand because one leg is so contracted. He has lost the ability to communicate. Should his life be prolonged with a PEG? I can't see any reason to do this. What I'm saying is that your mum's overall condition should be considered when considering a PEG. If it will give her some more quality time then go for it. If not, ????????? The patient has a right to refuse a PEG. It's a tough decision.

Pat

margh2468 profile image
margh2468 in reply to Gadgetgeek

Totally agree with all you have said. It is a horrid situation to be placed in, and yes it did prolong Leon's life for 11 months, but certainly no Quality of life. Hugs Marg H

Suebatt profile image
Suebatt

Hi sarah

Archie had his done last March we didn’t have any problems at all and unfortunately he couldn’t have anything through his mouth

If he didn’t have it done he wouldn’t of lasted long as he did

Sue xx

Sarah1972 profile image
Sarah1972 in reply to Suebatt

Thank you sue. How was Archie when he had it fitted. I’m concerned as mum is very weak xx

Suebatt profile image
Suebatt in reply to Sarah1972

He was fine really he never liked it but he knew he wouldn’t of lasted as long as he did without it the dietician should sort her out with what she will need The one thing it did for Archie was he seemed that his weight stayed the same

I hope that you can get sorted with this and all goes well for you

Sue xx

Sarah1972 profile image
Sarah1972 in reply to Suebatt

Sorry I meant at the time of fitting? Xx

Suebatt profile image
Suebatt in reply to Sarah1972

He was fine it didn’t take long to do

Sue xx

margh2468 profile image
margh2468 in reply to Sarah1972

Hi Sarah1972, Leon my hubby, had PEG fitted, he was extremely weak. He lasted 11 months after, but certainly had no quality of life. Such an incidious illness. Hugs to you Marg H. Howlong N.S.W. Australia

Sarah1972 profile image
Sarah1972 in reply to margh2468

Thank you. Every response is so helpful, I’m sorry you have also had to suffer from this horrid condition, I expect your husband was very proud of you xx

margh2468 profile image
margh2468 in reply to Sarah1972

Thank you Sarah1972, it helps so much that other people going through similar experiences care. This site has been such a comfort, leaning post, support to me. Leon was wrongly diagnosed 8 years ago with Parkinsonism, I worked out it was P.S.P. some 3 years later. Not much info out there in Australia until I discovered this site. Leon's wish was for me to continue my travels sprinkling his ashes around Australia and the great places we went, we are Grey Nomads, I think he wanted that to make sure I continue my journey in this wonderful country. Hugs to you xxoo

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