Peg Feeding

[PUTLAND]

We had an appointment for a SALT test, and results were that my husband is having difficulty with liquids and solids. A peg tube was mentioned, but we have to see the Neurology Dept for their decision. My husband said he does not want it. Can anyone tell me if they have come up with this problem and the refusal to have it, I would appreciate all comments. Thank you

[chacha1]

My Dad just decided he would have it.. we have another appointment next week to assess suitability before waiting for an op date. He is still eating solids at the moment but recently got a bad cold and just did not have the energy to eat or drink and lost a considerable amount of weight in a very short space of time (2 stone in 6 weeks). He was so weak after that he couldn't get going again for ages. Now he's eating again and putting on weight but in the event he take a dip like that again, he wants to not have to worry about being pushed to eat and drink (nagged by everyone as he was seriously malnurished). The peg once fitted doesn't have to be used of course..he can still eat when he's up to it but it can be used to 'top him up' if he's feeling ill or tired or when he struggles more with eating and drinking as his swallow is deteriorating. He does not want it to be used to keep him alive - there are two separate discussions to had. I guess everyone is different and we have to respect their wishes - also depends at what stage he's at and also what quality of life he has. We were advised to do it whilst Dad is still strong enough to have the op .. even if he's not going to use it for some months. Worth to keep an open mind and go through the motions with the consultants to find out as much as you can and then your husband can decide. We found that my Dad initially didn't really know all the facts so couldn't decide until he understood that it can support eating and drinking and doesn't replace it immediately (until that becomes necessary perhaps later). After seeing him lose so much weight so rapidly and not have the strength to eat or drink I'm glad he's decided to have it (he's gained weight the last few weeks but it could happen again). At the same time my Dad has some drugs to increase his mood as this is the stage of the disease (naturally and medically) when depression really can set in.. then it's hard to make any decisions at all of course. I don't want to keep my Dad suffering so I never pushed him to have the peg but it was his decision - he's not ready to go anywhere right now.. he just needs a bit of support to keep his strength up. So difficult.. my thoughts are with you.. T.

[PUTLAND in reply to chacha1]

Thank you so much for your reply. You have made me feel more comfortable with this procedure, as it can be used as an alternative when the swallow gets bad. I think he thought it might be the end of dining out. At the moment like your Dad he is not ready to go anywhere, but at least we would have this in place in case we need it. I will sit down and explain this to him and I think it might help him to decide. I will respect his wishes, but at the moment he is strong, and would be able for the op. Once again it is great to be able to get help from this site.

[jzygirl]

Brian has got an irratic swallow and because he had lost a lot of weight it was suggested that he had a peg. He was all for it but while waiting for the assessment he put on weight and became more confident with his eating. After the discussion with the consultant and salt and dietician all together Brian said he would sooner not have it done so now he is on what they call risk feeding. He eats a soft diet (pureed meat and mashed veg) taking his time but and he is happy. Janexx

[PUTLAND]

Thank you for your reply. The trouble with my husband that he has difficulty with liquids and food so there is no point in a soft diet. He is eating a lot and has not lost weight but I need to put a plan in place. I will let Liam decide when the consultant talks to him. Once again thank you.

[jzygirl in reply to PUTLAND]

Brian does have trouble with thin liquid so he has it thickened. Because Brian had put the weight back on the consultant did say he was not ready for the peg just yet. What diet has the salt said he should be having because texture does make a difference. Janex

[PUTLAND]

The salt test has been shown to the consultant, so we are awaiting an appointment to see him. At the moment his diet is not restricted. Its so hard because he hides the difficulty with his swallow, and I have to watch him. Its his pride that is keeping him going. Hopefully when we talk to the consultant we can look at all the alternative. Thank you for your help.

[kryste]

Like I told Aunt Bev it is for just incase it has come in handy when she has a bad day she still eats and drinks only had to use it twice.

[Opope]

Hi

My mum developed pneumonia because her swallowing was poor. We were offered the PEG or risk feeding (pureed food).

Our consultant was amazing as she explained pros and cons.

PEG - Loose pleasure of eating and tasting (probably last pleasure left) susceptible to infection where PEG fitted.

Risk feeding - susceptible to chest infection. Still have pleasure of eating food and tasting.

We decided to risk feed and mum never developed any further chest infections. Feeding pureed food is a slow process as you have to give them time to swallow but we thought it was worth it.

Good luck with whatever decision you make but remember the PEG isn't the only option and its so final too

[Opope]

Further to my last they can thicken liquids to make swallowing easier.

[shasha]

MOST PEOPLE KN OW MY FEELINGS ON THIS SUBJECT ... I WILL NEVER FORGET THE POOR OLD LADY WHO WAS JUST LIKE A BABY BEING FED BY A PEG AND NEEDING TO BE CHANGED AND TURNED AND CALLING OUT FOR HER DEAD HUSBAND -- WHAT QUALITY OF LIFE DID SHE HAVE ? SO PLEASE THINK VERY CAREFULLY BEFORE YOU COMMITTING YOUR FATHER TO THIS AS IT IS NOT REVERSABLE

[Hidden]

I can fully understand why people won't commit to peg feeding but, in my Mum's case, the options were peg/rig fitted, or continued aspiration, putting her life at risk. Mum's peg was fitted through her tummy, rather than nose, and she had this for nearly four years, without any infection. As mum's condition deteriorated she became solely reliant on her peg/rig for feeding and meds, but this did give her some extra time with us. It is a very big and difficult decision to make. My mum ended up like Shasha 'poor old lady', being peg fed, changed and turned, but we still had three lovely years where we took mum and dad away on short holidays, and mum spent that time, in her own home, surrounded by family who loved her. I'm not denying it's extremely hard to watch someone you love deteriorate, as you all know only too well, and had we known at the time how this evil illness would progress we may have made a different decision, but it has to be the choice of each individual who has psp and we, as family need to support them, however difficult that may be.

Thinking of you all

Chris

[shasha in reply to Hidden]

THANK YOU FOR YOU REPLY - I TOTALY AGREE WITH YOU THAT IT MUST BE THE PERSON WITH THE PSP THAT MAKES THE FINAL DECISION AND MY FAMILY ARE WELL AWARE OF MY WISHES

[jimandsharynp]

PEG feeding is an individual decision to only be made by patient and NOT by family no matter how they feel. IMHO. My wife didn't want a PEG and passed away peacefully. Family usually doesn't want to lose the loved one but patient wishes must be honored. IMHO. Jimbo

[PUTLAND in reply to jimandsharynp]

Yes Jim, I agree the only person to make this decision is the patient. Whatever my husband wishes I will be totally behind him. Thank you