peg tubing

hi all.posted once before awhile back.i am finding it very hard caring for my wife she was diagnosed in 2012 with cbd.her appetite is poor and losing weight rapidly.home helpers are thinking she may need a peg inserted is this just another stage in this horrible illness.she justs goes from bed to chairnd can be very aggressive.it is so hard looking at her fading away while we should be enjoying life.our children 28 . 24.and 23 so they can fend for themselves but they are finding it difficult also.its a changed household watching dad doing all the things mam used to do.dont know when this is all going to end just taking one day at a time like everyone on this site.norrie

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  • Hi Norrie,

    This disease is not fair at all. My husband can still move around pretty much. he usually uses his cane or walker. He won't leave the house. He becomes very anxious and he said it is beyond uncomfortable to be around people. He very easily becomes confused and can't talk. So there we sit at home. We discussed a feeding tube, and he has decided when the time comes he doesn't want one. He has also lost about 25 lbs in the past 4 months or so. He doesn't eat unless I remind him too, and then he says he's full after a couple of bites. I think a lot of it is his swallowing, and he also says food doesn't taste like it used to. Our children too are out and we also should be doing fun things. Fun things seem to be a struggle. I try not to think about how thing used to be and how things should be, just makes me very sad. Hang in there, you are not alone. Keep reading and writing on this site, it will help.

    LynnO

  • Talk with your children. they are about the same age as mine. I dont know what I will do if B gets to the point of needing a tube. What else can you do, give them supplemental foods like Ensure? But choking on that stuff is as traumatic as wt loss.

    In all stay strong make something happy in each day.....and if you decide to give her a tube, know that you are doing the best for her and that you love her ...don't be afraid

    stay strong. Whatever you do know that YOU are doing the right thing.

    AVB

  • Norrie my husband also coughs a lot and has passed out, it frightens me a lot, you need to get the children involved to help out a bit, and give you a break one day at a time xxxxxxxx Yvonne xxxxx

  • It can seem a very lonely road when you sit at home doing nothing but watch the television. Conversation is limited and not only is the PSP suffer apathetic but the carer too. Thats how I feel anyway. I can feel my motivation slipping away and that helps nobody, keep telling myself to pull myself together and get on with life but easier said than done. Guess that is how lots of us on this site are feeling and having to fight for answers and help. My two sons both live too far way to help out, only get to see them every few moths a and the same with my 3 sisters. Life sucks.

    The PEG feeding is something I daren't even mention to Ben as he denies PSP, don't think he would want it and I understand that the medics will put one in unless he has made plans and written, signed and dated his wishes, just another problem to tackle.

    Hope you get things sorted and get the help and advice you deserve. Xx

  • I have written before about peg feeding. My husband died in October last year. I am still pleased that we(and it has to be a joint decision) to have a peg fitted. I believe that because he was properly nourished during the last months of his life he was able to maintain some mobility and some independence until the last weeks before his death. I managed the feeding without any problems with the support of an excellent nutritionist. It was less time consuming than feeding him with a spoon and he was able to enjoy a few bits and pieces, (chocolate, fruit) orally knowing that the main nutrition and liquid was given via the peg.

    The procedure to fit the peg was straightforward and painless, hygiene was obviously important to keep him free of infection.

    I hope this helps

  • hi katryn.my wife has no independence.it would be my decision after talking with our children as to having the peg fitted.my wife has to have everything done for her she has no mobility.when I say its my decision what I mean is when the time comes it will happen.its been a hard struggle.sorry about your husband.thanks for your reply.norrie

  • Hi Norrie I agree with Kathryn, my wife had a RIG/PEG tube fitted 2 months ago after 3 months with a nasal gastric the tube. She had lost 2 stone in 2 months fighting the swallow, cough and choking every meal. The tube had a magic effect no more choking, she got the nutrition and liquid she needed. It calmed her, yes, it means a routine with 4 x 3 hourly feeds similar to a young baby but so much better than the feeding fight with the terrifying choking, wheezing with each mouthful. She can have little (very little) tastes of jam, honey lemon etc but these are prone to set off chokes if too large. take care and look after yourselves. Tim

  • Hi Norrie,

    I agree entirely with Kathryn and Amilazy. My wife Roisin's experience with the PEG in the last 15 months of her life was very good after the agonies of trying t eat solids then being unable even to drink liquids. We used the pump at night and I believe the feeding process over a period of nine hours helped to to sleep as well. It was her decision to opt for the PEG.

    Christopher

  • The problem we've seen with the PEG tube is that after they've lost all mobility, ability to speak, etc, it seems to just prolong their misery. My mother had a PEG inserted a few years ago as she was still mobile, verbal and somewhat active with assistance - though having much trouble swallowing - when she fell and cracked a vertebrate in her neck. Now unable to do the chin-to-chest motion to help her swallow, weak from surgery and looking at recovering at a nursing home, the doctors recommended the tube despite a prior signed agreement to forego the tube when the disease had advanced her to that stage.

    Now that it is inserted, when do you take it out? We have nourished her failing body now for 3 years since that fall. She hated the nursing home, so we were able to find young girls needing a roof over their heads to live in my parent's basement and assist with her care. She is now completely immobile, stiffening up so that setting her on the toilet is almost impossible. We move her from the bed to the recliner and back 4 times a day and give her the meds and tube feedings. We fight pressure sores, ROM is almost impossible. She hasn't spoken a word in almost 2 years. We talk, read and sing to her when we're there. We have no idea how much longer this will go on.

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