Nil by mouth

[elizalou1710]

Please can any one help mother has advanced PSP and in a nursing home. She is completely peg fed and allowed nothing by mouth at all she is able to communicate with me by moving her leg and can say one word which is MORE and this is in response to the one ml of water I carefully and slowly drip into her mouth , I have been doing this on the sly for a year now as the home have forbidden me to do it! I am a trained nurse , I guess they are scared she will aspirate ! She is obviously desperate for ORAL fluid she gets water via peg . She is in bed can do nothing for herself not even press call bell ! If all she wants and is asking for is a drop of water surely she should have it are they being unreasonable or is it me ?

[Hidden]

The nursing home's behaviour sounds like a form of torture. Presumably your mother is still capable of swallowing some saliva so why not small quantities of water? I suggest you ask your GP's advice and meanwhile continue to give your mother her drops of water.

Barnacle

[kryste]

I know what you mean I snuck my Aunt something every chance I got what the hell shes going to go let her go happy I told them they didn't like it but sue me, my aunt mouth is so dry she chokes on what saliva she does have because it is so ropey as she describes it they finally started giving her ice chips but also the is a sponge swab that is lemon flavor that also helps I am sorry about your mother. my prayers are with you

[elizalou1710 in reply to kryste]

Yes the sponge swabs are wonderful x I will continue as is inhumane not to ! They even took a risk assessment out on me !

[Amilazy]

Hi my wife not as far on the PSP road as your mum but is PEG fed as her swallow reflex has stopped. I try and moisten her mouth with either very thickened squash or jelly but has to be tip of teaspoon amounts. Allow her time to swallow and then give another. Shown it by dietician and nutrician nurse who organised the PEG. So besides GP, I would try calling the team who put the PEG in for their advice. I also try small amounts of jam and chocolate moose to provide some taste though as thicker need check swallowed. I tried unthickened drinks but these caused coughing fits.

It sounds as though the home is trying to cover themselves, so keep giving water as you see fit. Best wishes Tim

[elizalou1710]

Thank you Tim yes another thing I do is bite a cherry and rub it on her lips to get taste . We dare not put anything inside her mouth as her jaw clamps down on it ! We have had terrible trouble with plastic spoons and broken teeth, when I use a 1 ml syringe I direct it around her gums or towards her cheek as by the time it arrives at her throat it's been absorbed, I will sort things out next week thank you for your reply Louise

[Amilazy in reply to elizalou1710]

Thanks Louise, not thought about a small syringe will get one next time get meds. Margaret still in control of jaws but she sometimes bites on the teaspoon (metal not plastic) so syringe will be useful. Tim

[Katiebow]

What a terrible dilemma, I'm with you on sneaking a few drops of water it must be an awful feeling to be that thirsty to beg for water. My husband is beginning to have swallowing issues and I know that he needs to make his wishes known now if he would want to be PEG fed, I don't think he would but a difficult subject to approach for someone in denial.

[shasha]

THIS IS EXACTLY WHY II WILL BE REFUSING A PEG - THE THOUGHT OF BEING THIRSTY

IS JUT UNBEARABLE FOR ME TO CONTEMPLATE

[elizalou1710]

To be honest I didn't want mum to have a peg but at the time she had lost 4 stone and had capacity to choose , it has been wonderful for giving medication and feeding her weight is now normal . However even tho I put water down the peg she still evidently needs a drink, I can't stand to think of her being thirsty so I will continue to give it via syringe ! The peg has extended my mothers life by at least 2 and a half years and during this time we have had very special times together ( saw me get married) however I wish I knew whether she is glad she had the peg or not 😔Louise x thank you all for your replies and support x

[jimandsharynp]

Because there is no chance of full recovery it is my opinion that whatever makes the patient happy and isn't injurious to their health is fine. IMHO Jimbo