Desicion!

At long last S has finally agreed to have a Peg fitted. Having hardly eaten or drank anything for the last month, losing a stone (14lbs) in weigh, we were starting to run out of time.

I have never been sure about Peg feeding, even now I am in two minds about the theory. All I know is, I couldn't go on another minute, watching the very fast decline in him. The stress of trying to feed him, only to have it fall out of his mouth, was beyond heartbreaking.

I accept this will prolong his death, but I can't believe the anguish that will bring, can be worse than what I have been going through, the past few weeks.

We still have to wait to have it fitted and with everything now shut down for the next few weeks, because of Christmas. It's going to be hard, but at least I know, if things get bad, he can be admitted and have it fitted as an emergency.

I would have supported S, if he didn't want a Peg. Even now, it's not cast in stone. For me, it means I may be able to look after him at home for a bit longer. Last night, I doubted if I would get past Christmas, or if he would live that long.

This is such a hard and personal desicion. I really admire people who have said no and have been able to carry out their wishes, but the reality for us, S is starving to death. No kind major organ failure for him.

Did I ever tell you what I think of PSP???????????????????????????????????????????????????????

Lots of love

Heady

77 Replies

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  • Heady - so pleased that you've made the right decision for the two of you. Fingers crossed it gets fitted quickly & that S gets stronger soon X

  • Thank you

    Lots of love

    Heady

  • Heady my thoughts were if C still felt he wanted to eat but couldn't get enough nutrition to sustain him, then he wasn't ready to leave me. Once fitted his general health improved, skin, no infections etc. We were able to go out until a few days before he decided he didn't want to be fed. Yes he ended up starving to death but because he and his body had decided enough was enough, he didn't crave for food or drink and those last 11/12 days were very peaceful and pain free, or so he indicated. I think he actually left me two days before his heart stopped beating as his muscles relaxed and his eyes were blank. It may seem strange to say, but those last few days were the most stress free days we had had for 6 years.....because he was ready to go.

    Sending you a big hug and hoping your Christmas is not too stressful.

    ❤️ X

  • Its heartbreaking, Heady. You are in the situation I dread, as Chris is basically healthy !

    Whatever you need to do, you can only do what feels right.

    A big hug, Heady. You are really being tested.

    love, Jean xxx

  • Need that hug Jean. Thanks.

    Lots of love

    Heady

  • I know. And I need it back !! Life is tough . Mutual hugs !

    lots of love back, Jean x

  • Aww heady, I'm pleased the decision has been made and pray it's fitted very soon?!!!!

    Big hugs x

  • Who knows. You know what it's like at Christmas, only juniors working. Not sure I want that!

    Lots of love

    Heady

  • I'm gonna keep my fingers crossed

    Does the patient have to be put out to have the peg fitted? Apologies for my ignorance x

  • No. They avoid general anaesthetic but give a sedative. My husband was only gone for about 20 minutes. He came back a bit tired but able to respond. The procedure was described fully to us before he went to a room/theatre in the same department.

    No need to apologies. We are all ignorant until we have to deal with it.

    XxxX

  • Thank you nannab

    You are a mine field of information

    How are you doing my darling? 💋

  • Hi there, I'm doing OK but shed a tear or two every day still when I start talking to my darling and then remember. I am, however, rarely at home. My daughter in law came yesterday and said, "Bev, your calendar is ridiculous." Every day until yesterday had at least two activities written down. Today I arrived at our eldest son's and our grandchildren have been entertaining me. I'm here until after Christmas so will be OK. Colin and I never spent a Christmas here so it will all be a new experience.

    I hope you manage to make good memories this Christmas and send you a great big Christmas hug.

    XxxX

  • Bless you nannab

    A friend of ours said you have to make 'new' experiences and I agree with that! When we have respite we try and do new things, as things we did with dad when he was able to get out are a touch heartbreaking

    Sending you lots of love and extra hugs, your a very special lady! X

  • ❤️XxxX

  • No Heady , How do you feel about PSP??????

    As I have said before , it's a difficult decision one that I have already said no to for me; For my husband however He lost more than a stone in about two weeks and I was doing the heimlich every meal......couldn't even get to the puree stage....So B has been on the PEG almost a year. Without it I would be a widow. Was it the best way to go? I don't know ;but if I remember correctly B said yes to the PEG long before he needed it then I "convinced" him "No" til _I_ needed it and everything went out the window when I saw my husband dying! Am I not still seeing my husband's demise only longer and more complicated as we go? yes....But how do you not do everything you can and, like you Heady, if he didn't want it I would have been ok saying goodbye last January....Now I must wait and watch us both decline.

    PS he got his in December 23, 2015 . It was the quickest I have ever been into and out of a Dr.s office with actual help happening... I called maybe on a Friday the 19th, they made an appt for the 23. He told us what the procedure was and in less than 3 hours B was back out and that was that! In fact I asked my gp if B needs to have tube replaced after a year....she got me an appt with surgeon, he said why are you here it looks fine. in fact, Dr. HELD BRUCES HAND FOR A LONG HANDSHAKE, ASKED HOW BRUCE WAS DOING EVEN LEANED AS IF HAVING A GOOD CONVERSATION WITH AN OLD FRIEND - REALLY CONCERNED AND WAITED FOR A REPLY.....I promise my jaw dropped to watch this man treat Bruce with SUCH HONOR AND DIGNITY....AND WE'D ONLY MET HIM ONCE BEFORE....TWO DAYS BEFORE CHRISTMAS LAST YEAR...

    This is the 2d person with whom Bruce has dealt that their demeanor made such an impact....Thank you Dr. Wood,

    Goodluck Heady,

    Ps again is S on anything nutrient to help with the long weeks ahead....or can you just get it done now?

    AVB

  • Hi AVB, thank you. I expect all our senior people are already swanning around on some Caribbean beach. Juniors aren't allowed to make any decisions like this. I can't get any thing into S, so no, there are no extra nutrients. Just hope he can hang in there.

    As to the answer to your first question, I would be kicked off this site, if I answered it!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Lots of love

    Heady

  • Like Ll5 said.... don't even have the language to truly describe PSP!

    Does he drink thickened water.. lots of broth with a crushed childrens vitamin (they taste better)....

    (:!

    AVB

  • Thinking of you,just hoping for an easier time for you both,Love to you and to PSP well even I don't have the language! Px

  • Thanks. Hope everything is going well.

    Lots of love

    Heady

  • There is no right or wrong answer with anything to do with PSP/CBD. I remember after the first visit with the specialist I asked about a Peg for my mother in law, they looked at me in horror saying is was not the right way to go. How can anyone tell you what is right or wrong when you are dealing with someone you love?

    Wishing for better days for you and S...as for my thoughts on these diseases....can't put them into words just raw hatred

  • Praying all works well for you both and you have a peaceful Christmas, I reckon it's the best we can all hope for. A catheter was fitted this morning and I had a peaceful afternoon, had to practically beg for it , it's made such a difference already . I'll be thinking of you xx

  • I am so glad they have finally sorted the Catether out. Don't be alarmed if you find blood in the bag. A little side effect of putting the tube in, that they don't tell you about!

    Lots of love

    Heady

  • Thanks for that tip, it wasn't mentioned. I was surprised no leaflet instructions were left either. Never mind, it's making life easier.xx

  • Whichever path you have chosen ,it will be the right one .

    A simply giant squeeze

    Georgepa

  • Thank you George. Needed that!

    Lots of love

    Heady

  • Dear Heady, I am in tears reading your post. I really hope and pray S gets fitted with his Peg really soon and all goes well and you get your wish to get to look after him not for a bit longer but for a LOT longer. Seeing your photo on the website, you are a lovely couple. Sending you lots of love and big hugs. Nanny857 xx

  • I am afraid we are very close to S going into a nursing home. This might delay it a little bit. At least the stress of mealtimes will go. I am under no allusion that Peg feeding will be easy, but I will be in control, not be sat there for hours, trying to get him to swallow.

    Lots of love

    Heady

  • Heady, hope everything works out well. D is still eating but food is now dropping out of his mouth along with his tea that he drops on his lap. I asked him if he want to be fed with a peg and he said no. He is getting much weaker. Harder and harder for him to get out of bed. Don't know what I am going to do.

    Lots love back,

    Audrey

  • Thinking of you Audrey

    Lots of love

    Heady

  • TY Heady, ditto!

    Lots of love back

  • Carbon copy here with Charles. So sorry.

    Cuttercat

  • Cuttercat, It is progressing. If I can't get get more than 2 hours a day of help, I don't know what I am going to do :(

    Auddonz

  • Me too, I'm trying to arrange more help once the hospital bed arrives.

    Today was awful, his last day at the Day Care, he barely was able to make it. So sad, he has given up completely.

    I think he's waiting for my birthday in February, but may not.

    Cuttercat

  • Cuttercat I am waiting to hear if I can get more help during the day. At least 4 hours a day. He was up most of last night and I am totally exhausted. Couldn't get him out of bed all day. So I went back to bed and took the phone off the hook so I could get some sleep. He is starting to choke on his pills and drooling his food. I am at wits end,

  • Audrey we are about the same here , it exhausts me just thinking about getting him out of bed its sooooooo hard xxxx

  • Escada29, so hard is an understatement. It is hell watching him getting worse day by day, I can't get him out of bed myself. xoxo

  • I can feel your pain and angst in this post Heady it can't be easy as Christmas approaches and S can't get the PEG fitted until afterwards. Isn't it always the way, when after all this time you have been hoping he will give permission and you are left in limbo land due to timing. I hope you manage to get a chink of enjoyment over the Christmas period if only through having a glass or two of vino. It's one of those times that's it's difficult to know what to say all I can do is send my love and support to you Heady.

    Big hugs

    Kate xxx

  • Thanks Kate, I will know more today. The community nurse from the hospice is dealing with the mechanics of everything. Can't see anything happening until the new year, though.

    Your love and support is greatly appreciated.

    Lots of love

    Heady

  • Fingers crossed

  • Heady I hope S gets the peg fitted soon, you would think if he is not eating, they could do it before Christmas? Why oh why do they make you wait, when the person needs it now? Big hug heady and everyone else, and a very merry Christmas to you all Yvonne 🎉🎉🎉🎉

  • Can't see any routine procedures happening until the new year. The only chance is if it becomes an emergency, which obviously we don't want.

    How is George now?

    Lots of love

    Heady

  • Heady he has just gone back to the centre, seems better, still lots of coughing, but he is managing to eat. Mobility is rubbish, wheelchair all the time. You have a lovely Christmas, just saying this morning fingers crossed no drama over Christmas, with any infections. This PSP loves a bit of drama at the wrong time. Merry Christmas to you and S praying you get a peaceful one xxxxx. 🎉🎉🎉🍷🍷🍷🍷🍷

  • S hasn't gone today. Far to sleepily. Got him up and ready, but it became obvious, that nothing was going on inside, so put him back to bed. Getting very scared here. Feels as if we are well into the final act.

    I'm afraid that is the big down side of this site. We all recognise the final stages, by what people are saying. I know I am writing what others have expressed, just before their loved ones passed on.

    Lots of love

    Heady

  • Another big hug, Heady.

    Sounds as if his body is letting you know.

    So sad to feel so helpless,

    Love, Jean xxxx

  • Heady hopefully S will pick up, this PSP is a hateful illness, xxxx

  • Oh Heady, I'm happy for you. You are doing an amazing job. Have a Merry Christmas!

  • Heady

    I read your post and had so many emotions , scared,sad and happy. You must be overloaded with all of these and many more.Wish one could come up with some words of wisdom for you. PSP is a lonely road to drive and it would be so nice if someone else would take the dam steering wheel for a while.

    Take care of yourself

    Dee in BC

  • Oh gosh, you summed it up there, oh, for someone to take hold of this bloody steering wheel, even just for five minutes.

    Lots of love

    Heady

  • Hi Heady

    Sorry for your predicament - there are no words to describe the difficulty

    My dad had the PEG tube and it was very painful for us to even feed him - you have to do it 5/6 times a day, and every time we could not tell if he wanted to be fed or just wanted us to stop and let him pass away... regardless of what we felt his eyes were trying to tell us, we fed him through the tube in his tummy... in this situation, you cannot stop - the patient can get constipation, could be throwing up, could get pneumonia (the PEG tube doesn't ensure that the food doesn't go up the throat and into the windpipe i.e. aspiration) or 3rd degree bed sores and you would still have to keep on feeding him

    An acquaintance of mine, who is a doctor in the US, had a PEG fitted for his dad during the last stages of life - when he came to my dad's funeral he said, he was thinking like a doctor and letting him starve to death would have been more humane than the pain he went through because of it - palliative people can confirm but a patient in such a situation does not starve per se but is nutrionially deprived and their body and organs shut down in a more gradual manner

    A PEG tube would make sense if the patient can walk, talk, read a newspaper, watch TV, play with their grandchildren and have a reasonable quality of life but suddenly cannot eat or drink - if the patient is already bed bound and has very poor cognition, then it's prolonging their suffering

    I am sorry if I am trying to lead you into my point of view - but this is my own and my family's perspective, based on our dad's particular situation at that time - yours can be completely different

    I wish you and S the best

  • S still gets up every day. Is able to watch the TV, goes to the hospice day centre once a week. Not a great quality of life, but enough to still fight for. I don't think he is ready to give up yet. I accept, that situation is changing. The rest, well we will have to see. At the moment, the doctors aren't looking after him at all, by saying no to the peg, he was refusing treatment, so they had washed their hands if him. At least now, they will start to care for him again, so he can pass on, in a dignified way.

    Lots of love

    Heady

  • Sammy90210. Can I ask a stupid question, but was Peg feeding painful always or was it because of an infection where it was inserted. My family have agreed on a peg for my mother as she is not able to communicate her wishes, she has declined so quickly that we never had a chance to discuss it.

  • Dear Heady, I am sending you a long warm hug. I hope the PEG is set soon and gives you and S some good time together at home. My sweetheart just looks at me quizzically when I try to discuss it with him. Whatever is done will be my choice alone, I am afraid. He still eats, and enjoys it, but is steadily losing weight.

    On a brighter note, he has a new granddaughter! She just arrived yesterday. They live across the country, but thanks to technology we have sweet pictures of the new mother and child, and we had some champagne to celebrate.

    Merry Christmas to all, love and peace, Easterncedar

  • That's lovely. S has another due in April. His daughter lives in the States, so I don't suppose he will ever meet him.

    Lots of love

    Heady

  • Hi Heady sorry to join in so late. Our experience with the PEG was one of improved life for M for over a year, but now coming to the end of the second year, she is in the late stages of PSP, I am getting concerned about prolonging life without quality. Then she smiles. The PEG has allowed M to see both grandchildren and cuddle them again smiles. The nursing home has improved her care as they adapted to the knowledge of what PSP is, she is happy there though not mixing as she is a good 15 years the youngest. Aspiration is only a risk if the nutrition is delivered too fast or if the patient is lying down rather than raised 45+*.

    Good luck in getting S PEGed quickly, if they are worried about S they will suggest a nasal gastric tube M had one for 6 weeks while waiting for the RIG op. A lot more tricky than PEG but much better than the food fight and choke.

    Best of luck have a great Christmas Tim

  • All the best Heady. I feel your pain in your post, truly sad. I know we will be approaching this stage with mum in the future. I am shocked and appalled that Doctors in the NHS won't fit the Peg until the New Year, I hope that there is someway of getting it fitted sooner rather than later. Xx

  • thinking of you both,bless you.I think you will find life will be a little less stressed with the peg.Our meal times were horrendous before the peg.Having a mega bad morning at my end to say the least but wont bore anyone.Love and peace this Christmas xxxxxxx

  • Hi Heady,

    It is so fortunate that S can still convey his wishes to you. P has lost 20 kilos in a year since being in the nursing home and now he is on protein supplements as he stops eating/drinking every time he feels off colour or has a UTI.

    I arrived yesterday to find the SALT with him - asking him how easy he finds it to communicate his wishes !! I hope she soon realised the answer to that one. I dread the time that I have to make the decision about a PEG because I know it will be mine alone as P is unable to comprehend.

    Good luck with the procedure and I hope it goes through soon.

    xx

  • My husband had a PEG tube put in 10 months ago when he was in the hospital with pneumonia. Although 20 years ago when we made our trusts, living wills etc. we both stated no extra measures were to be taken, things seemed different at the moment. I don't think he has regretted it. With the help of an excellent speech pathologist, he now can have his evening "comfort meal" with me. His food is pureed but we do eat together. But, alas, no more sparkling dinner conversation! Although he is pretty much confined to his wheelchair he spends several hours outside on the front porch. He even on occasion does leg exercises holding to the porch railing. He insists on watching the evening news and football (American) on weekends. I would not call it a good quality of life, but I think he does. He still has his great sense of humor and makes us laugh frequently. i am concerned about the condition of the tube. Anyone have an idea about the lifetime of one? When queried, his Dr. said they don't replace then until they are completely blocked!! Merry Christmas to all.

    Martha

  • My wife had her original PEG for almost 2 years before her passing in July. It only got a little sticky after giving her one of the laxatives through it that Hospice prescribed . I regret ever giving her that. But I bought a special brush to clean the tube (a little expensive - $20 USD, but worth it).

    Ketchupman

  • Oh heady, such a difficult time for you and S, I really feel for you. Can't imagine how hard it's been for you both. But gaining S consent and wishes to have a PEG will hopefully be a positive for you both! It means he wants to keep going and will take away the difficulties of feeding. My mum had her PEG for a few months and it made a huge difference to her wellbeing. Improved her bowel movements, her hydration levels and could take meds via the peg. Mum could still manage food orally though so she was more fortunate. Best wishes for both of you xxx

  • Hi

    Every person is in a unique situation, we found the hospice invaluable in this kind of decision making, having very difficult conversations in a caring and professional manner. So if anyone is worried speak to your local hospice .

    Have a great day everyone

    Julie X

    Rog watching jungle book !!!!!!!!!! Managed to make Christmas stuffing whilst singing along with mowgli !

  • In the US, our Hospice won't recommend or provide coverage for one if you are under their care. But if you already have one inserted and then go into hospice, they will support it (i.e. Provide the formula and supplies).

    Ketchupman

  • Dearest Heady,

    I see it all before me as well. Unfortunately Charles will not agree to the peg so the days are numbered. He is not eating as much. The caregivers noticed the ice cream is still in the freezer. He tries so hard my valiant man but he is ready to go and I don't want him to.

    He says he's tired.

    You did the right thing Heady. If I could I would too!!!

    PSP has ruined my life. I'm crying now so I'll sign off.

    Cuttercat

  • Its all so sad, cuttercut. I can see I will be in the same place before very long.

    Can't feel Christmassy.

    love, Jean x

  • I know, I know.

    Cuttercat

  • What made him change his mind, Heady?

  • Me sobbing and getting hysterical at every meal, might have been a factor and I guess the realisation, that the end is definitely in sight, if he doesn't do something.

    Lots of love

    Heady

  • I know that's a tough call Heady, but it will be a little easier on you. Although I'm not to that point of requiring a Peg tube, I have agreed to it just the same and have said so in my Power of Attorney. A medical break-through could happen any time and I want to have my name on that list for any clinical trials. Have a Merry Christmas and may the Holidays be good to you. X

    daddyt

  • Thank you.

    Lots of love

    Heady

  • So many tough decisions. Hope S gets his lPEG fitted soon, it sounds really challenging at the moment. Oh what we all really think of PSP is prob unprintable!!!!

    Take care sending big hugs

    Xxxxx

  • It was definitely the best decision for my precious Kim. We managed to get almost 2 more years of life. Lots of struggles, but little misery.

    May God be with you both during this trying time.

    Love, Ketchupman

  • Hi Heady

    I just want to let you know that I am with you and you are not alone. My lovely Mother has CBD and we will be facing the awful decision of PEG feeding at some point. I am so sorry that we are in this position it is truly dreadful but I am feeling this too and you are not alone. We are all in this together,

    Sending a huge hug to you,

    Martina x

  • Oh Heady, it's such a difficult time. We are struggling with the exact decision at the moment, do we get a peg or don't we. Mum isn't able to make the decision herself as her cognition is poor. We're trying to take everything into consideration but it's so hard.

    Sending you big hugs xxx

  • Mu mum had a stroke and she lived a further three years without it being any bother atall ,

    I have ask about one for John over and but they nurses and team have dragged there feet . Lo think its because they don't agree with prolonging .but no one knows how long anyone will be .. Not over till the fat lady sings or so they say .

    I have seen huge weight loss and decided to try baby foods . The smooth . It's been a great help .

    I no long worry about preparing it worrying whether he is responsive at any time , .

    I feed on demand as they say .mwhant time he is responsive enogh.. It's the perfect texture . The meals are not large but I have seen a different in him already ,

  • Hi Heady. I second what nanaBev said. A nurse ones told me that patients die when they want to, I believe she was right, a peg is not really prolonging life, it makes it more bearable for you and S. I wish you all the strength you need over the holidays. Lots of hugs and love Maddy.

  • Thanks Maddy. They have put the referral through. Got to take some blood tests tomorrow. Then hopefully, will be done next week.

    Lots of love

    Heady

  • Big hugs to you both xx

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