peg feeding

[maeve]

Hi Mars,

My sister was fitted with a peg in the October of last year because of the problems with swallowing. She had lost a lot weight because of this and importantly was not drinking enough and getting dehydrated. In her case there was no choice because of the problems it could cause in the future if we did not go down the peg route. The procedure was straight forward . I was taught how to administer the feed and care for the peg site. The back up and suport I had from the dietician and feed company support nurse was superb because it worried me how I would cope. My sister gained weight, felt better and could still have some food and drink by mouth. Unfortunately my sister's ability to swallow has got worse so now she is going on to the continous feed system with just keeping her mouth moist. The back up is still there for me even though she is in a nursing home. I can still and are being involved in her feeding regime. It doesnt prolong life it just makes life a bit easier which is all that we can hope for with PSP.

Best of luck

Maeve

[malky1]

My Granny is in a care home and they have also raised the issue along with Doctor/Speech therapists that she may soon have to consider a PEG feeding system. I feel a bit stressed at the thought of explaining to my Granny again that something will have to change that she enjoys. She has been in hospital in early Feb due to dehydration and it doesnt help her confusion either much when she gets in this condition. My Granny has lost a lot of weight but i feel like the PEG option is taking the last thing away from her as when we go out we like to go to Cafe's and a wander at the shops. Is it as bad and restricting for her as i imagine or is it the best option? She can eat a soft diet but liquid is a complete no go sometimes

Any info or advice would be appreciated

Kathleen

[Hidden in reply to malky1]

How did you choose the care home? Whereabouts do you live? i'm looking at the moment but am worried about my husband's care.

[maeve]

Hi Malky,

If you decide to go along the PEG route for your Granny it need not restrict your outings etc. The feed can fit into a little rucksack provided by the feed company and hang onto the back of a wheelchair. I take my sister out regularly with this rucksack and go places. You need not be restricted with this method of feeding. She is on a continous feed system for 12 hours and I shall be collecting her today from the nursing home and bringing her to my home for the day with the feed in the rucksack . It is so unobtrusive no one would know what is going on.

Explain the positive side of things to your Granny simply, anything is better than ending up in hospital dehydrated or with a urine infection.

I had your misgivings too but the help and support is out there.

Maeve

[maggieh]

Hi Everyone

It was really great to hear such positive comments on PEG tube feeding. My husband chose not to go down this route however. We spoke together on this subject, at length and I also sent for a very interesting and informative information sheet from the PSP Association which I read out to him slowly. He gave me a thumbs up when I asked if he had understood what it entailed and when I asked if he would want to have a PEG tube fitted later if the need arose, he gave a firm 'thumbs down'. I continued to ask him the same question every two or three months. He always remained adamant, it was not for him. I respected his wishes to the very end.

Luckily, as it turned out, he was able to eat - mashed food - just until a few days before he died - which was from other complications.

It is all a matter of personal choice, but as I said, so interesting to hear the positive results.

Thank you.

Maggie

[Lorra]

Hi I know how you feel my Mum had the excact problem she will start to put weight on I used to joke with my Mum she was going to the fat club as my brother calls it, it is such a help with meds no problems giving them and that helps its such a horrible thing to go through my heart goes out to you all. Lorra