When Colin could communicate properly he signed a statement saying he wanted a PEG fitted when it was absolutely necessary. We had quite a discussion and I told him I wouldn't want one and when the time came I'd rather let nature takes it's course.
Little did I know then that things aren't as black and white as I thought. Colin is still eating quite large meals that I cook and liquidize. He takes over an hour for a main course and always wants a pudding, another half hour, and I am willing to take the time but getting enough fluid into him is a nightmare. For him not to choke, it has to be thickened to almost the consistency of his liquidized meals. It wasn't a case of him just drifting off into a forever sleep; he was very dehydrated which made his skin crack causing painful open sores. One of his carers also works in a care home and she said that all those with PEGs have lovely skin as the feed contains all the nutrients required and administering water is so easy.
Today I had to get him to hospital by 8.15 am. Fortunately he was nil by mouth and the hospital is only a 5 minute drive away, even with 2 sets of traffic lights, but I still had to get up at 6. Everything went well and he slept all afternoon in his own bed. I had things explained to me but I still haven't used the PEG yet, he has had a proper meal. I'm still a bit scared and will read the booklet again. Tim, I expect you could do it with your eyes closed now, well maybe not but you are the expert. I have to flush it through this evening So hope I do it correctly.
The PEG was first mentioned by the Hospice in September 2014 and Colin said no then and I'm pleased we had over a year of extra time without it. At that time, I thought it would never happen but it has so we'll have to get used to this next stage.
I told Colin tonight that I was going to put boxing gloves on him; he has already started fiddling with it.
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Thanks Jean. I managed the 1st flush tonight and it was OK. I waited until the carer arrived for moral support but she has never seen a PEG before so could only look on. You are so right when you say we can't be sure of anything and this has taught me to never say never.
W has said he doesn't want a peg and today we talked about him meeting with his GP to discuss and have recorded what he does and doesn't want regarding his care.
It's really good to get everything down in writing while you still can. It will make it easier for you to make decisions later on if you know what he wants.
NannaB what a time you are having and what a difficult position. Ben said he doesn't want a PEG fitted when the time comes but it is a worry what happens if they don't have it fitted and the suffering it can cause. This disease certainly knows how to throw everything at you over time. I hope that Colin benefits from the PEG and it is good that he made his wishes known. Thinking of you both. Kate xx
Good luck NannaB, it is a learning curve I made sure I had the PEG team with me for first attempt in the hospital and District Nurse for a couple of days checking I was doing it right. I needed the practise under a bit of supervision to build my confidence but once I got over the worry about doing it it becomes easy and routine except when I forget and let go the syringe to the tube and cover myself and the kitchen.
If you are like me you will need a bit of confidence, but as long as the water goes into the PEG there is no problem. Have they given you a regime of liquidfor Colin? it used to be about 1.5 to 2.0 litre a day. As Colin is having meals this amount of water will be reduced. I suggest you set up a tray with the syringe, jugs and any meds you give him it means if someone else has to give the liquid that the stuff is in one place. I also write down the routine so it is easy to hand over if required. No doubt this is what you have already been told.
Good luck I am praying you have no problems and your confidence grows and Colin gets his fluids while still enjoying your puréed food.
Yes. I agree with Tim let someone else know how to do it....It is not hard but it is new! I have a "table" set up on the couch next to Bruces chair. I can put everything need there.....clean up stuff...towels etc. to make sure I have enough water I use a 500ml measuring cup and fill half full. I use more than they told me (60 cc) because B won't drink by mouth! I haven't crushed any pills yet but I think I might just start back the CoQ10.
Oh and for me, I keep the cans I used for the day stacked together. With my poor memory I cannot remember how many I used without a visual.
Oh NannaB, my heart goes out to you tonight. I have exactly the same feelings as you, but S won't communicate his, even when he could talk, refused to have the conversation. So I have no idea how he feels. We also, sit over a meal for hours. He can feed himself still, but each day, gets slower and slower, won't let me help at all. I am only chopping his food and he can manage anything and everything I put on his plate. It's liquids we are having serious problems with. He has just finished the drink I put in front of him at lunch time, now trying to get this afternoons drink into himself! With a lot of nagging, I am finally getting a litre into each day, plus all the extras the food brings. I don't think he is quite as dehydrated as he was a couple of months ago. We have got an appointment to see the dietician, to discuss peg feeding. I am going to leave it to the professionals to find out if it's S's wishes, let them explain the ins and outs of the feeding.
But the thought of me having to deal with peg feeding, I feel is crossing a huge red line. Not sure I am prepared to cross it. Hopefully, we will be a way off, having to make that decision and, like you I will be able to fulfill S's wishes, which ever way he decides.
As for the boxing gloves, I wish you the best of British, with that, if Colin is the same as S, he will need more than them, I think Mike Tyson holding his arms will still not be enough!!!
Sending you a very big hug, I am sure you need it tonight!
Thanks Heady. Well done you for getting a litre into him. Far more than I could. I've bought Colin A new night shirt as he has been sleeping in just Tshirt type PJ tops with no bottoms for quite a while. This is long but opens up at the back for easy access but as it is long, I'm hoping he won't be able to pull it up and fiddle. The thought of Mike Tyson made me laugh.
Thanks Tim. They told me what to do in hospital but never did it or let me do it. I'm hoping the HENS are coming tomorrow. They phoned last week and said they would be round when he got home but didn't give a day or time. I managed to flush the tube tonight with 30mls of water and it went in OK. I half expected it to seep out around the wound but it didn't. I haven't been told amounts. I only gave him half the normal amount of liquidized food tonight. He doesn't appear to be in pain. It's a good idea writing everything down. It wasn't suggested today but I'm pretty hopeless at remembering things.
Thanks for your encouragement. I'll keep you posted.
Congrats Colin and Bev. Welcome to the world of Jevity and tubes! Scary at first but like the hoist, you will be masters in no time. If he is sensitive to the tape or like me can't seem to easily rid the goo off of B's skin; make or buy a belt. I made a belt out of an old robe sash. I sewed velcro on it intermittently so that I can weave the tube through the gaps . Bruce says it is comfy and no tape residue on skin . It holds the tube in place better too!
Well you two good luck you'll do fine, I promise....I don't know what your people say. The insurance here says no food by mouth ever again. The doctor says eat when you want....B has all but quit eating except crackers....but at least he is no longer choking,
I do hope and believe this will be good for Colin.
Dear NannaB, as usual, you have given me something to think about, and I appreciate the perspective. Like you, I have said I wouldn't want it. My guy said he would, as long as he had some quality of life to maintain, but there is little clarity in that. I can see that that the PEG may be a very good option. My guy still enjoys eating and I'm glad he has that pleasure, but it's not the only one, and if the PEG relieves suffering, as you are describing - the cracking skin must be so painful, as well as dangerous - it is very good to be able to choose it. I wish you the best of luck with it. I saw my mother in law manage it for her husband, and they did well. I'm sure you will get used to it, too.
(My FIL had cancer of the esophagus, caused by 65 years of very hard drinking and smoking, and the PEG gave him some good months at home at the end. He even had his daily glass of wine, wotthehell.)
Thanks for sharing your experience here, NannaB. It helps more than I can rightly tell you to feel part of a community, all of us going down this road together, some ahead, some following, but no one alone.
Hi Easterncedar, long may your guy continue to eat. The glass of wine for your FiL made me smile. Colin has thickened Cappucino with Baileys in it, by mouth though, not syringe.
Everything will work out NannaB, Your smart, witty, have the patience of a saint, in other words you are perfect. Now I would like to know whether Don really has PSP or is it part of the Parkinsonism syndrome. I am totally confused since that is what his Dtr wrote at his last visit about 2 weeks ago. I wish I could take him to someone who could really tell me what is going on.
Ha ha, VERY far from perfect. You should have heard me on Monday evening when C removed his convene while sitting on his chair before emptying his bladder. Then I felt really guilty as it was the next day he was going to hospital for his proceedure.
When the neurologist gave us the diagnosis in 2010, he said the thing that distinguished PSP from Parkinsons was the fact that C couldn't move his eyes. The staring, non moving eyes were quite an early symptom after falls. Several months before he first went to the doctor lots of folk mentioned it as twice a month he would be at the church door welcoming people in. He had been doing it for years so was well known. I started getting comments from people saying that he stopped making eye contact. Different people said he looked over their shoulder when he spoke to them. Another friend from church said she watched him during the service and he hardly blinked and stared at the back of the head of the person in front of him. I had noticed the staring but not in the church situation as I was always in the hall with the 3-5 year olds. Can Don move his eyes, follow your finger when you move it in front of him? Has he seen a neurologist yet and had scans, test etc. The neurologist put him on Sinemet saying that if he had Parkinson's it would be more effective but may help C initially.
I hope you get a confirmed diagnosis soon. You both still have a struggle ahead whatever the diagnosis but you don't want him to take unsuitable medication, risking side effects and not doing any good.
How's it going this morning Bev? I hope Colin managed to leave all his pipes alone. These people that are coming to see you soon, that's the first lesson I would get them to teach you, what to do when he does fiddle!!!!
Why do they have to fiddle SSOOOOOO much??? S woke up at silly o'clock, bed soaking, but his pads barely damp! HOW??? Now I am having the problem, he can't bend, getting him on the toilet is a nightmare! "Pee" everywhere again. WHY can't he just use his pad? Think we must be back on that slippery path again and this ice isn't helping!!!!
Hope you have a good day, learning all the new skills you will need! I am sure it's all totally overwhelming at the moment, but YOU will manage to over come them, like you have everything else. Colin might learn a few new words, but Hey ho, it's not him dealing with this. I'm positive he will understand any frustration that you WILL show. I agree with you, you are not perfect, none of us are, so DONT try to be, or beat yourself up, if you fail!!!! What I am trying to say, very badly, is I know this is hard for you, I understand what you are going through at the moment and the anguish you must be feeling. But like always, we are with you, trying to send support across the ether
That's what is so good about this site, the support we all get and give. I really value it.
I joked about boxing gloves yesterday to stop the fiddling. Today his hands were edging towards the tube and I took hold of them. They felt quite cold so I asked him if he wanted to wear a pair of gloves to warm them up. He indicated he did so I put some on him, big furry ones. He got warm hands and I got peace of mind. We both won!
Very well said, NannaB! B's neurologist wasn't sure until I told him PSP. He did a gaze test on him and it was conclusive......Tell your doctor....did you hear me, TELL YOUR DR. to do a gaze test on him.....
also, though I don't think as conclusive, have Dr walk with him to see which way he falls.....B fell to the side and back but often fell forward. But see if he has a backward fall. Also go to CurePSP.com and ask for a PSP info kit.....It gives so much info and the dr may learn a thing or two.......We are our mates only true advocate.....Audrey, I thought you got this thing worked out. I'm so sorry you're still wrangling this one....not that I want your man to have PSP, i hope he doesn't! But NannaB is so right, the lack of downward gaze most assuredly defines PSP!
NannaB he has been to 4 neurologists. The one he is seeing now wanted to take him off the sinemet slowly but even the first day I could see a difference and not for the better. Just one pill less. I gave him the same dose as per instructions the second day and he got even worse. So, on the third day I gave him his regular dose and called her. Told her what happened and her answer was, well I guess the med is working. Yes he can move his eyes and follow my finger. I don't know what to do next. Wish us luck.
If the Sinemet makes a marked difference and his eyes work that is good as you know something is helping. Why not have a look at the Parkinson's pages on this site. There are over 5000 members so you may find out a bit more. Please keep us updated though. I would hate to lose touch. I hope his eyes keep moving as you should always have means of communicating if he can't any other way in the future. Parkinsons, if that's what it is, is far more common so there should be a lot of help out there.
Very best wishes. You are both in my thoughts and prayers.
Hi Audrey, S can move his eyes up and down, but not as fast as he should. Not that I know the difference! That's how he was diagnosed. Another thing to look out for, is his shirts constantly covered in food? Another name for PSP is the "dirty tie syndrome" Also, I have tried to take S of Sinemet, it's not dramatic, but everyone can tell when I start dropping the dose. So Sinemet can help PSP sufferers, just not as well as for Parkingsons.
I shouldn't worry too much about an official diagnoses, frustrating as it seems. Parkingsonism's, is the group name for all diseases, like PSP, unfortunately the outcome will be the same, no cure! I think they just label it as atypical Parkingsonism's as they haven't got a clue!!! This is what is on S's records, as, although they are positive that it is PSP, it can't be confirmed until death. Perhaps your doctor, just likes to be absolutely certain before attaching labels!
Hi Heady, Yes he can move his eyes without effort. How fast is fast? No, his shirts are not covered with food. Think his Dtr is not quite sure or maybe to early to tell.It has been almost a year since he was diagnosed. I am so very frustrated but am trying to take one day at a time. unfortunately, my blood pressure is completely out of control. My Dtr wants me to double my med and call her on Monday to see f it comes down. Yesterday night it was 171/92
Sounds similar to Chris. He often has a fixed gaze, dry eyes, can't see down but can sometimes follow my finger. He is taking sinamet and seems to benefit.
I'm not really very bothered about the label. Its bad news anyway.
Thanks for sharing your experiences, NannaB - for those of us not yet in that situation, it gives us plenty to think about. My dad now says he doesn't want it, but this reminds me to finally fill in that piece of paper I downloaded over six months ago, you know with wishes of what to do or what NOT to do. Sigh. Definitely not an easy subject to tackle.
Keep writing how you get on with the PEG (I just hate that word for starters).
A bit easier to say, and spell than Percutaneous Endoscopic Gastroscopy though Lleve. It's not easy talking about future wishes with loved ones but a lot easier when they can talk than when they can't. I hope your conversations aren't too stressful.
Do hope you are getting on OK. With the PEG. It does all sound a bit scary. We have had lots of discussions about whether D wants one or not but, as you say, things are sometimes very different than you imagined once the decision actually has to be implemented. Even though we both know how important it is to make wishes known while still communicating, I think D would almost rather leave it to me to decide when the time comes. This, of course, puts a huge responsibility on me and I'm not sure I would have the courage to say no unless he had expressly said that himself in advance. For now D manages pretty well on the food I cook as long as it has a suitably mushy consistency. In fact his swallowing, choking, eating etc (and fluid intake) is not too bad compared to his almost complete lack of mobility, sight etc.
Hi Vicki, Colin was always reluctant to discuss the future. It was the Hospice that helped him open up. I don't have power of attorney for C. I know I probably should and I did get all the papers but something always stopped me filling them in. At the hospital yesterday, the doctor needed Colin's consent to the proceedure. Colin is very hit and miss when it comes to thumbs up now. The doctor asked him if he understood the risks involved and he put his thumb up. He then asked if he could go ahead with the proceedure the thumb went up again. I was relieved and then the doctor said he needed an independent witness and called a nurse. Fortunately Colin managed thumbs up for a third time, amazing. I told the doctor it may not have happened a third time but he said he could accept his early written statement.
I hope D manages to eat for a long time. Colin still eats, rarely choking but drinks are definitely difficult.
Take care.
Bev xx
Good luck, nannaB, and to Colin. Yes, the PEG is scary to start with and on the rare occasions when things go wrong - as one night when Roisin pulled the whole contraption down on her. We found that a critical aspect was hygiene, daily cleaning process around the entry point. The only times Roisin fiddled with the tube it transpired she had a small rash on her skin beneath the dressing.
Being unable to eat or drink normally, she opted for night time feeding which proved satisfactory with the added bonus of aiding her sleep. But I had to make sure her head, as she lay on her back, was at an angle of about 30 degrees to guard against regurgitation etc.
Hi Guys,Madeline lived another 2.5 years,thanks to her feeding tube,I so wish those days were still here..it brings tears to my eyes still,don,t worry,those who choose it will see the end reward,do not be afraid of it ,it simply by-passes an inactive throat,it brings on problems with sylivia but keeps you together for more of this voyage they call life.Don,t worry about it coming out,your love will not leak out like a swimming pool rupture,a simple bandage and off to get a replacement,during the later 2 years I replaced them myself,a 5 minute job the only problem is having a GP who will provide you with one,love to all....remember the hole the end will leave in your heart is a crater compared to the little incision in your partner,s stomach,Rollie
How sweet, Rollie. I can so relate to you. I often wondered how difficult it would be to replace the tube....B, whose tube is almost a month in the using, doesnt fiddle with it so I'm lucky there. But things come out and it really doesn't seem that difficult to replace......Though I thought the same of my windows in trying to re-glaze them.....haha
I have written many times about my experiences with my wife and the PEG. I still think it's the greatest thing ever invented. Yes, I was a bit uneasy the first few days, but quickly became a pro. I also trained my mother-in-law how to do it. I realize a PEG isn't for everyone and I think there is still a lot of confusion about it, which makes people scared. Kim is only 54 years old and in her 6th of 7th year with PSP. Since she's so young and because we have been attempting various clinical trials to help find a cure, we (Kim, myself, our children, her mother, her brother) all got together and discussed having it done. I had 100% approval from everyone, although some wanted to just defer the decision to me. Kim's neurologist was against it and wanted me to bring in hospice. This was 18 months ago. We've had 18 months of ups and downs, but we've definitely had some good times ... more time with our grand daughters, a vacation to the beach, birthday parties, and 2 Christmases. And lots of hand holding and snuggling.
Kim does tug on her tube at times and a couple times has opened the cap and flipped the switch that keeps stomach contents from flowing back out. It makes a small mess, but no big deal. I think when she tugs on it, it probably causes some discomfort, so she never keeps on tugging on it. I always make sure a 2x2 inch gauze is surrounding her tube and under the flange. These gauze pads have a small slit that allows you to easily slide it under the flange.
I found this on Amazon and actually bought 2 of them (in case one got soiled). But she was never that fond of them and we rarely wear them. But this might be an option for Colin. smile.amazon.com/NelMed-Tub...
I've never had to replace Kim's tube. I did also buy a special brush that you can run down the tube to give it a good cleaning. And periodically I will pour some Coke or Sprite (any soda will do). The acid in the soda will help clean it. But I always flush it with water afterwards, as the soda can leave a sticky residue.
I've been told that if you're going to get a PEG, you need to make that decision before it's too late (ie. the patient is too weak to tolerate the surgery). And in the US, most hospice organizations will not support having a tube inserted. They will support and provide supplies for a tube if it was ALREADY in place before enrolling in hospice. We finally signed Kim up for hospice this past December and they have been providing all of her feeding supplies.
And I still love the feeding machine that slowly passes the feed into her throughout the night. It doesn't overwhelm her system. US insurance companies as well as hospice provide these too.
KM I just put in a post about supplementing feed with CoQ10....but its in a capsule,....can I break it open and pour it in B's water I use to flush with ?
Be interested in your thoughts....
So Kim is in a hospice? Forgive my bad memory; is this a longterm or a short term event? I know you told us last month but I thought maybe something was needing to be taken care of and then, once resolved, back home.....How are you managing, are you ok? I do hope you are taking care of yourself.....
You can put most meds either in the feed or separately in water and flush it through. The only exception are those drugs that are time-released. I always ask our pharmacist on any new drug to find out if I can give it via the tube. For those that can be put in the PEG, if it's a capsule, you just open it up and empty it into some liquid. If it's a tablet, you'll need to crush it first. I bought a mortar and pestle. My aunt is crushing for my uncle who now has a PEG and she just takes the tablet and wraps it in plastic wrap and smashes it with a hammer. I prefer my method.
As for hospice, she's not been inpatient, they just come to the house a couple times each week to check on her and the nurse assistant will help bathing her (but I generally still get her in the shower to get her really clean and wash her hair). The only reason we went with hospice was because her neurologist told me that Kim's systems were shutting down because of her fever going up and down. And Kim was no longer communicating at all. Only hand squeezes and eye blinks. But for the past 7-10 days, she's been back to the old normal ... no fever, good heart rate, and saying some words, and easier to ambulate around the house. I think it's from all the prayers coming our way. And I'm sticking to that!
Amen, KM...Dan....It sounds like Kim may have had an old fashioned illness (flu, cold UTI), that, like the rest of us, had to deal with PSP......I trust that what your neuro says is true, but a little more investigation might have found a bug!!
At any rate, I am so glad Kim seems to be doing so well!
As for your aunts way of crushing her hubby's meds, I do the same thing with....bread crumbs. Just like our mates need their meds pulverized, my meat loaf needs its bread crushed, per a plastic freezer bag under my feet! Hey they made wine using the same technique!!! hahaha
Yes it was yes it's expensive. I searched around on other sites and couldn't find one better or cheaper. The packaging kinda indicates it is single use, but I think it is single "patient", since this is sorta targeted to the health care ptofessional's use. I always run really hot water over it and then store it in a plastic sandwich Baggie. I only use it about once a month. But I do think it's worth investing in. The hospice nurses were impressed with how clean Kim's PEG looks after 18 months.
Wow, I could only get the cleaned the first 2 inches with a Qtip.....and you could tell a difference so I think I am on my way to the "store" right now! well when my kids get here...can't do this stuff on my own!
Thanks for the Amazon link. I'll check it out. I had experience of the back flow today but it was my fault, not Colin's. I unclipped the little peg on the tube before attaching the syringe. I got quite a shock but I don't think I'll be doing it again.
I'm with you in the last sentence in the reply to AVB. I sent an email prayer request to our church with a list of concerns mainly about practicalities and this was forwarded to all the members who have email. Every one was answered including the one where I asked that help would be provided to get him undressed as he is so stiff. The nurse said she would help me put him in a gown and the doctor told us not to bother, he would lift his jumper up and do the proceedure as he was. For once there were no cars parked outside our house so I could park out front to get him in the car and at the hospital the nearest parking space to the entrance was waiting just for us when all the others were full. There were other requests and everything went smoothly. So Amen to your last sentence.
Yes, the backflow happens to me when I get distracted. But doesn't happen too often. I pretty much get into a rhythm while doing it. I may try doing it to music tonight. Lol.
But I need to be careful. Kim got pregnant on our honeymoon because we were practicing rhythm. We were Southern Baptist and thought it just meant doing it to music. Lesson learned. Lol.
That's so funny, not sure if you were amused at the result but a true blessing. I hope the baby wasn't premature, all those Southern Baptists would be counting the weeks from your wedding day.
Oh my, you must be a psychic ! The doctor broke her water accidently during a checkup so they had to induce two weeks early. I'm sure many were probably doing some counting. But we squeaked by and weren't excommunicated. We married on 6/6 and our precious daughter was born 3/19. And yes, she was the greatest 1st anniversary present we both could have ever wanted.
Ahh! When we married I wanted a baby straight away, mainly because I wanted to give up work. Colin said we could have one when we had been married 2 years as we needed two incomes to renovate the old house we were buying. We married on 5th August and our first son was born on 4 th August, 2 years later. The greatest 2nd wedding anniversary present we could have ever wanted.
On our 1st, I had shingles in my eye, ear and all down one side of my face so had to go back and stay with my parents as I was overdosing on pain killers. The cat came too and mum let him out and he ran under a moving car and was killed. Our second anniversary was definitely better than our first.
Oh my! Not a good start with a new baby. I hope I never get Shingles. My dad has had them and so has my mother-in-law. I've heard they can come on when you're under a lot of stress. And I have my share of that, as I'm sure everyone in this chat room does. I've been tempted to pay the $250 for the shot that is supposed to keep you from getting it. My insurance will only cover it if you've 60 and over. And I'm just a babe at 55.
We didn't even know it was DDay back then. That was a little bit before our time. Also, we were married in 1981. I was only 21 and Kim was 19. Young and in love. Now we're kinda old, but still in love.
Rhythm method.....Hey The only time Bruce and I had kids was when I was on the pill! 4 years of the pill...3 kids ...they are now 28, 27, 25! Stopped the pill , never had another !!!! so be wary....well most of us are grandparents so I guess that worry is over! Hahahah oh yah, NannaB, you know those church ladies were counting those weeks; days from wedding night to, "It's a (baby)"
Ours are 33 and 31. Kim had C Sections on both. So after our second, we decided that was enough. We had a girl and a boy and the doctor recommended no more. So Kim made me get a vasectomy. She said she got cut on twice and it was my turn. Ouch!
Where we lived when we first married, there was a lovely family of 4 little boys. They always looked happy and cute and were so polite and good. That's what I wanted, the perfect family. One night I was sitting at the bottom of our bed, cradling our 3rd new born son who was screaming, our middle son who was nearly two was at the top of the bed with Colin wanting to play and I was crying, saying between sobs, "You have been fed, changed, winded, what do you want?" At that moment Colin said, " You did want 4 didn't you". What stopped me throwing the baby at him, I'm not sure but that was when I decided Colin was going for the snip. In those days we had to have a lengthy consultation to make sure that's what we really wanted and there was a good reason to have it, and on advice from a friend, we took all the boys with us, and for once I didn't ask them to be good. In the surgeon's office, the baby never stopped crying, the then 2 1/2 year old started opening the drawers of his desk and the 6 year old wanted to play with old medical instruments he had on display. It was chaos and he couldn't get us out of there quick enough with a date for the op. Colin had it a few weeks later. 6 months later he had an infection, the vasectomy had come undone and he had to have another one.....and I never had any c sections. How fair is that?
That made me laugh, Bev. I am oldest of three sisters and we each had three children. One had three girls, one had three boys and I had two boys and a girl. My sisters had theirs really close, whilst mine are more spread out. When the one with three boys went anywhere people always thought she had at least five. They were delightful but like little monkeys, hanging on doors and climbing round necks, absolutely convinced that everyone loved them. One day my friends new husband arrived in the garden, saw them and said , to our horror,"Come and get me " He disappeared under an enthusiastic scrum !!
He never made that mistake again.
Chris loved roughing it with kids and he would make them all squeal with delight !!
Mine were like your sisters boys. When they were young, there used to be monthly second hand children's clothes sales at our village hall. The seller would get a proportion of the sale price. I bought but no one would want clothes after mine had wrecked them. One day I arrived at the sale with a 1 year old in a push chair and a 3 year old. I was looking at clothes when a woman shouted, " Who owns that child swinging on the curtains", D had let go of the pushchair I thought he was holding, he was half way up the opened stage curtain and was trying to grab hold of a rope hanging down beside it. I was very embarrassed and didn't go to another sale for quite a few months. When I had all the family last weekend and the 2 sons who both have 2 boys recounted what theirs get up to, I reminded them of some of their misdemeanours. They said,"Oh yes" and then discussed together other things they had done that, at the time, I never knew about.
Did you go to the meeting on Wednesday Jean? I wouldn't have been able to go but had totally forgotten about it until Sarah emailed to say she had missed us.
Have a good weekend if you can. Ours will be a quiet one.
Where do you find the special brush for the PEG tube, Amazon? to clean my husbands suction tube on that machine, I put small strips of tape around a long piece of metal to easily go into the small hole but then expand back out to the sides of the wall to clean surface. However the PEG tube seems a little more daunting......
Oh, NannaB, another step along the torturous PSP road! You mention the positive side of the peg. Let us hope that it makes things more easy for you both. Good luck and God bless.x
I thought u had been quiet the last few days Bev , I wondered what was up .
First of all how long was Colin on Sinemet .? . John has been for th last ten or more years , I kept saying I thought it did no good but the powers that been insisted it was .
I have persuaded them to reduce though and they are going to halve his night one .
John is pretty advanced and sins Xmas spend most to the time in bed , his speach very poor with whispers or nothing . Started to use hand signals at last at least .
I am not sure if he had worsened since they started him in Memantine to help him process his thought . His memory is still excellent but he is so slow and can get scrambles .
His eyes are closed most of the time and. I have to promote him to open his eyes when I am at least trying to feed him .
Today I opened a bottle of toddlers spag Bol which I seived and thinned and then did same with a fruit and jelly pot with a pit of custard . Not a lot but we did manage .
He isn't incontinenet and like I have said I hoist him at all times . He is 82 .
Still on the throws of fighting CHC . The nurses that's d nurse and oarkinsons along with mental nurse on our side .
The oarkinsons nurse is arranging for the palliative team to com in and talk through some things with u s. I don't want him in hospital but keep him home at all time .
We have spoken of the peg , said he would see what happens . He is losing weight. Already Lossed lots . Goes all day with weeing . No one has mentioned peg yet .
My mother had a peg fitted at ninety she lived a further three years . In a nursing home .. She put some weight back on . On her case mentally a difficult time but we still had lots of laughs and reminiscing .
She didn't have a bit of trouble with the peg .
Did coming have to have aneathesetic how long did it take . John has myoclonic jerks when in a relaxed state so don't know how that would affect any procedure .
I don't quite know what happens with my mum because I didn't go back to hospital until sh was back in the ward .
They insist he has parkinsons now with dementia , o don't think he had got the dementia . You have to know how to ask the questions , and only give on question amd no alternatives . Not say is it yes or no . . Just ask is it yes thumbs up .
Personally after my mums experience I would recommend having it done ..
you will have no trouble I am sure .my very best wishes to you all. I think we are ALL a very brave lot ...
Yes, I'm still here. I've spent so much time on the phone and having professionals call that I have left my iPad alone. Colin was only on Sinemet for about 2 years I think. It seemed to help his speech at the beginning but that's all. It's amazing your mother had the PEG at ninety and lived for quite a long time after it. Colin was under sedation but not a general anaesthetic. He was only away from me for 45 minutes but we were in the hospital for exactly 5 hours.
I'm amazed John isn't incontinent and hope he never is.
You must be so fed up with the saga of the CHC. It must be so hard for you.
thinking of you Nanna B and Colin.not an easy choice to make.When Des was first diagnosed we said there were points we didn't want to go beyond well we are already beyond some.and I think the peg will be next.I just try to focus on something good on the horizon.
One good thing I thought this morning at -7 scraping off the car I have back my wooly hair I had lost in chemo.
Thank goodness for this site,never alone always someone else with the same struggle.
We get the hospital bed delivered tomorrow with the air mattress,wish they could deliver a bouncy bedroom for him he is in bed head swathed in bandages after a 4am fall backwards.
I tried putting the med ap on a tablet someone suggested but he was not interested,I do understand he cannot be bothered to learn something new know the feeling.
Hi P. How I admire the way you keep going trying to focus on the good whilst struggling with all your difficulties. I've got it easy compared to you. It must be good to have your hair back but I think you may need a hat as well with -7. We only got to -3.
I have a doze on C's air mattress sometimes when he is in his chair. It's quite strange at first but C sleeps well on it. I hope Des will like it so much that he stays put at night and avoids more falls. Here's hoping.
My hubby has had a tube for almost 3 yrs now, and it's been his main source of nutrition. he still likes to try to eat pureed food, just for the satisfaction of taste. it takes him so long to get very little down, he gets no nourishment from it. It will take you no time at all, and you will be a pro, administering formula, meds and fluids thru the tube.
I have just deleted a longish reply !!!! Or at least the battery failed ...
I think my head is going to burst talking to so many professional Bev . On Tuesday the d nurse called to have a catch up and check johns sore bottom . I a,still waiting the air mattress and he s been mostly in bed since Xmas .
The the oarkinsons nurse turned up at the same time. It stresses me because I know how it affects John as well having so many people talking the same time .
After they left I fell into a chair after pouring myself a whiskey that was at three in the afternoon , not something that would normally do but it did so the trick because johns sitter and husband turned up that's after the carers in between . How do we cope ,,,!
The Parkinsons nurse had sat with me and told me she wasn't happy to add any more meds because they affect him with hallucination and such . Then brought up about referring is to a palliative care team just to a chat .
I did feel she was trying to prepare me for the end in some ways . That's before they have even considered the peg . I have just given him half a bowl of thin porridge and later he may have the same amount of a puréed dinner . I do mean a small bowl. ,
Did you start the ball rolling with the peg feed or was it suggested to you . I don't know who to turn to in a way . Which nurse for instance . None f the GPS know him the d nursing sister is the coordinator for the CHC . Or should I ask the oarkinsons nurse . Dietician or salt .
He has never been into hospital for the oarkinsons and I have told them I don't want him to do so but obviously with this it's a different story . Is Colin on warfarin John also has Atrial fibrillation but nothing else he will be willing to have the peg .
I know what you mean about professionals in the house but I suppose it shows folk are interested and doing their job. A dietitian has just left after weighing Colin. He weighs 12st 2. In June he was 12st 8 so all the hours of feeding did him some good. I thought he had lost a lot more weight than that. I had to roll the wheelchair onto runners which were the scales. This was then weighed. I then had to hoist Colin onto the chair and wheel it back onto the runners then hoist him back into his chair. The dietition wasn't allowed to help and it is a job getting him to the correct sitting position on his chair so I'm going to sit and have a cup of coffee and even put a drop of Baileys in it as I'm not driving.
Just before Christmas feeding was horrendously slow and his fluid intake was small. I asked him if he thought it was time to have a PEG and he put his thumb up. I wrote a note addressed to his GP saying we thought he should have one and he sent my note to the relevant doctor at the hospital who rang me. He said he wouldn't do it unless absolutely necessary so I asked him to contact all the professionals invoved and ask them. He did, including the Hospice and phoned me again saying everyone was of the same opinion; if he was going to have one, it should be now. He said because of this, he wouldn't need to see Colin before the proceedure and asked me to arrange for blood to be taken the day before, by the District nurse. I felt like someone from Casualty or Holby City, ringing the nurses and asking for FBC, U&E and INR. The INR is to check clotting. Colin isn't on Warfarin.
It's the dieticians who have dealt with it the most so if you need to ask someone I would start with them, although, as I said, I wrote to the GP who we very rarely see.
Enjoy the whisky as I enjoy my Bailey's....diluted with coffee of course.
Thanks a lot for that Bev .. I have just e mailed the d nursing sister who is suppose to be coordinating Ath everyone else for the CHC , explained everything to her . I have th dietician and salt tel No . I'll wait her reply first . John is in his chair for the first time in nearly two months and trying to watch the prog about the queens cameraman .
He is making a nuisance of himself so must be a bit better . At least for a while .
I can't get access to a scales I have asked over and over . John was always 13 stone .i haven't a clue now but certainly know where like that now . He has a waist even . They have measured him with a tape measure !!!!! What's that all about body mass or something . Just guesswork..
Do you have a first point of call . That's all we need isn't it .m it certainly does my head deciding the best person to contact . They all pass you along the line . .
We have been consultant Gp nurse OT Physio dietician . Can go on and on can't we .
If you could get the ceiling joust you will find it much easier once you get use to it . Amd you certainly will do so .
I agree, and we have never been given a first point of call. I discovered last week that when I wrote to the doctor it was flagged up on everyone's computer in lots of different buildings and at least 3 different towns. I suddenly got phone calls from everyone I had ever dealt with, or their replacements, in all departments. It was crazy. The phone hardley stopped ringing. After about the 5 th call I asked why as no one had mentioned the PEG, they just asked how he was doing in connection to their specialism. I was told if the email has a flag attached, everyone who has had anything to do with him gets the same email. That's why I asked the hospital doctor to contact them for the latest updates, which he did by sending one email. He had all their replies and rang me back the next day. I was very impressed. Let's hope you have the same system in your area.
We weren't offered a ceiling hoist but I'm not too bad with the new one as long as I'm not being watched like I was today.
My mom has PEG too it helped a lot to keep her healthy bec it had become very difficult to give the medicines too. She also gained kilos that she has lost 😉
I know what u mean about being watched m even when so one asks if they can help you it throws you train of thoughts , I think it's much better when one person is doing it . you don't rely on ther other person getting it wrong . .
my difficulty is getting John into the hospital in the first place the last time they sent a mini bus ambulance and he was strung up in midair on the safety straps his feet not touching the floor . it was dreadful no room even for a wheelchair they dragged him .he hasn't been ousde the house since .
That's awful not being able to transport him properly. Before I bought Colin home on Tuesday, the doctor said he would arrange transport. I told him I had bought him and he was surprised and asked how I managed it. I told him I had a wheelchair adapted car and strapped the wheelchair in the back. He then asked how I was going to get him out of the wheelchair and I told him I'd use the hoist and he said, "But you can't do that on your own". I don't know what he thinks all the thousands of lone carers do. I was surprised he mentioned transport though. I always had to fight for it for my dad.
Feeding is going OK. I'm giving him some food by mouth and then topping up with Ensure through the PEG.
I intend taking him to the hospice tomorrow and am sending some Ensure for them to give him but they said they will give him some normal food as well so that's good.
I keep having to religious in all the time and the it's jumping all Ives the place .
John cannot weight bare at all all , so has to be hoisted at all times . I had hoisted him into his wheelchair ready for ambulance men and then they caught hold and dragged him ink the ambulance and play him onto thins small seat and hung the steak over his shoulder . we had already had someone come to access him before they picked us up but obviously had sent out the wrong transport . h cannot even sit in th wheelchair for by long . I never use it now even he goes rom be to commode and wheelie commode to his chair although he hasn't be in his chair even as much since Xmas . so you can understand how I worry if he ever does need to go to hospital . he never goes out hasn't for around two .years , we also have seen steps at the front of the house , I suppose I could use a wheelchair taxi . but I haughty having th ambulance th ambulance men would do all the pushing . and take him to the dept.
such a worry . I could find someone to catry him in wheelchair don to the taxi . we did that once . but I don't like asking in case some onehurts themselves .
ayes the last d Nurs told me I couldn't joust him . I asked her she though did it the rest of the time . she told m should wait for the Carers . I strongly told her h isn't incontinent . would you be Able to wait
that's a right old mess I didn't check before posting .
it is suppose to read ' I keep having to re log in each time and it's jumping all over the place . hope you can make sense of all the rest . sorry for the mix up
Yes, I understood it. It's very frustrating when posts don't say what you thought you'd written. Predicted text puts the wrong words in sometimes. I typed a list of names for our church once and pinned it on the notice board, not realising that one lady had printed as Weedy Coleman. Her first name started with We and her surname with Col and it changed to Weedy Coleman. She thought it was very funny and from then on I've always thought of her by that name.
Getting Colin washed this morning, the carer noticed his skin on his bottom has torn again. I am so careful with him, it is so annoying, upsetting when it breaks yet again. I've cancelled the hospice as I want him on his side. It should be my art class today so I am going to do 2 hours pastel work and am going to ignore the housework.
Thank you BEv . Happy colouring .... My daughter usually takes me but she has shingles and it's been very sore . A friend has offered to take me instead .
I thought I was the only one who made such a mess of the typing and not checking .
I do it all the time . My fingers go faster than than my brain lol .
So difficult managing the sore bottom isn't it I have been leaving the pads off John but like I say we are so lucky he isn't incontinenet , other then little accidents so far ..
I but the very soft dry or wash wipes and use them as a liner . I put two of those under the bottom so catches any smaller staining .
I have got to tell you this about how to hold the PEG and Syringe......like a champagne glass; bottom three fingers wrapped around the tube and thumb and index around syringe.......I was holding the syringe only the other day, got ever so slightly interested in something else and POP! syringe parted ways from open tube and it flowed like faucet! sticky icky and it seems to find places ...how'd it get there!? But this morning I learned something about stomach water(?) Before I fed B, I had to clean the head of the tube so I took it off and washed it . I either failed to tell bruce to hold on to the tube or I failed to realize it no longer had a lid...duh!!.At any rate i turned from the sink back to Bruce to replace the freshly washed head of the tube and found him sitting in his walker amid a puddle of stomach water.....hahahahahaha, believe me I was not laughing at the time......So I got my newly cleaned floor rags out; and after 3 of those old kitchen towels wiped up the content, I noticed that my floor was squeaky clean...literally! It wasn't dirty before, but with a dog and Bruce's walker wheels it's not SQUEAKY, until I guess, the stomach acid that dissolved whatever may have been on my floor!!!! Hahahah we might have a new cleaning product!!!! sorry thats gross
So thats not all. I put on the cap and proceeded to cleaning the floor. Finally got to Bruce's 'breakfast'. I pop open the can, pour in the first 60ccs only for it to shoot out the small little secondary input valve that I had failed to close when I put the cap back on.....NOT AGAIN!!!!!! The floor?, no longer squeaky clean!!!
Things learned and well relearned......Ya gotta laugh
Wow! Stomach acid floor cleaner. You could patent it and make a fortune. You'd need a lot of "donors" though. I had the same problem when I opened the peg before attaching the tube but it was all over the bed so my floor is still dirty. You are right, you've got to laugh......or you'd cry.
Yes I found that Jevity, when dry ,stiffens any supple material to the point one could write on it.......I guess this is a good lesson for those men out there not spilling in their lap lest their "boys" get wedged in more than usual!
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