I have not been on here much lately, George has not been very well, he kept saying he was going to die, I thought it as well, he has been so poorly. When he was unwell I rung the doctors, to be told doctor would call me back, had to pop out career left with George, to be told on my return doctor had rung, they are going to give him antibiotics, so I said to the career, are they coming in she said no, I was on the phone gave them a piece of my mind, doctor was here within 30 minutes, felt quite proud of myself as you have to be forceful, with doctor and everyone you deal with,
Well today George is up and looking much better, laughed a bit today, does not talk much anymore, if he does it is getting harder to understand, but he is on the mend, eating by himself, with the dog having a field day with what he drops, we had to feed him for quite a few days, so all good, as far as good can be.
Hope you are all ok, hugs to you all. Yvonne 🌹🌹🌹🌹🌹🌹xxxxxx
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Yvonneandgeorge
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I am so trying ec but feel like I am loosing it. Just went out to get a lighter. Yes I am bad, I smoke and was so angry all my lighters didn't work. Not supposed to drive at night and discovered my brights don't work. One way of finding it out but a hell of a time. They guy was just closing his gas station and just gave it to me. Best thing that happened to me all day. Going to collapse now. D is calling me to cover his legs. Don't understand why he can't manage to get into bed right and cover himself. He does this every night. Drives me crazy. Living on valium. Guess its time for an anti depressant.
Sorry things aren't so good with you Audrey. It is the repetition that is so frustrating for me as well. Doing, saying the same thing over and over again. With C the worst is when transferring him from bed to chair or commode. It's a struggle on my own to hoist him up and the bring him down in the correct position. I am so pleased when his bottom is centrally over the hole in the commode and the as I go to remove the straps, he stretches out his legs so his backside slips from the seat and I have to do the whole hoisting thing over again. Sometimes it takes 3 attempts. Every time I say keep your legs bent but I end up nearly sitting on his lap to keep him in place before I can get the strap round him. Perhaps that's why he does it, so I sit on his lap.
Perhaps D wants you to tuck him in at night and give him a kiss and cuddle. I know, like me I expect, all you want to do is collapse in a chair.
BEv sounds like you still using the wheelie hoist . I don't get any trouble with doing that when using ceiling hoist . .
I have been leaving his sling on while in his chair or the bed . I remove it fro under arms and legs and tuck straps away . ..I think I mentioned I place a slide sheet on back of his chair so that he slips into chair more easily same on th bed . .
How is Colin is he any better since the peg , getting use to it .!
John so unpredictable one minute responds look away and he gone off again. . ..
Yes, we have a portable hoist. I didn't want the ceiling to be damaged but may have to think again although the OT did say she didn't think we could have a ceiling hoist but I can't remember if she said why. I tried the slide sheet down the back of his chair but as he straightens his legs as soon as he sits down, he nearly shot off the front of the chair even though he didn't have the slide sheet under him, only on the back.
C eats very little via his mouth now. He holds it in his mouth until it dribbles out or chokes. He has lost weight since having the PEG fitted but would have lost a lot more without it. It's good when we go out as I can feed him wherever we are. I also take bottled water with me so he is well hydrated. C rarely responds although today he surprised me. 2 of our grandchildren stayed a couple of days and today, when we returned from a trip to the rec, I asked him if he wanted to go on his chair or bed. He just stared at me. No response to thumbs up or down. I wrote bed and drew a quick sketch of a bed on an A4 sheet of paper and chair and sketch on another sheet. I put them level with his eyes which were open and asked him, bed or chair. He managed to touch the bed paper.
I was so pleased so will do more of that in the future. I used to do it until he stopped responding so didn't continue but as he responded today, will try again.
That's the one we have . It's not fixed to any wall or ceiling Bev absoloutely no damage the one we have does have rather long feet but there is one with just posts and no feet . We have two one over beeps the other over chair .then I transfer to commode .
It's much easier to use . I do io fine when I lower into bed or chair I hold the remote in my one hand and can use two hands on the front of the sling. At his knees to guide ...
I wish I could show you . John goes days with no response then can have an hour when he just about can manage a sentence . But rare . I will see if I can put my hand on the book that came with tomorrow Bev will let you know . Off to bed now . Night xx .. Do think of you ..sleep well if you can x
In fact since I sent the last reply he asked for commode and I had to put the sling back in hoist him out and back in again . .all done ...
I am lucky in as much , even as bad as John is he is he is mostly not incontinenet and each time he uses to commode I can cleanse him which is good for his bottom , since having th air mattress that much improved , need one for his chair now ,. Night
I've found it and it looks good. Is John's bed in the middle of the room? C's has to be against the wall and we pull it out to, change the sheets, clean under etc. Looking at the picture the frame goes each side of the bed. Is that how yours is?
Yes I can see some on u tube some good pictures . The one we have has a leg either side of the dining room (that was ) lol they have long feet though so I needed to move furniture to accommodate . It's telescopic to fit any space .
We did have one without feet just the posts and these were tensioned to the ceiling it left no marks after removal . That one had a rather heavy over head box thing so they changed it the the invacare transportable hoist . I would never manage with out it bev ..
You can adjust in the bed withought slide sheets no weight for you . Hardest part is lifting legs to place straps under . And pushing sling behind back Can leave it on through I do mostly now
Once you raise him it slides easily over to lower onto the commode and back to either chair or bed .
The commode chair we use has horseshoe shape front opening so I am able to cleanse with senset Foam with pamper wipes and dry , and I use Bepanthem instead of Cavilon. .
This is now where my mirror and light comes into practice . I don't slide the pan immediately under the bottom . I made a ledge to place it on . ( it's actually a thin pressure cushion ) it fits just right , I do have to take care though not to knock in off !!!!!!!!!!!
When he has finished . I try and make sure !!, don't always get it right lol ..
Remive the pan and place the mirror onto the cushion. You might find something ing else more suitable .
The pan can actually to place on the floor but if explosions , might not be able to aim .
Using the mirror . I keep a small stool which is really the smallest tables from my nest of tables . It's quite strong and just tpreally right size . This way I can see everything I need to cleanse etc .
He doesn't need rolling turning doing it this way or left dangling in the sling .
Maybe I should make a video of th instructions for U TUBE .lol
Whoops nearly forgot again .. Something else I intended to let you and anyone else interested .
JOhn hasn't been wearing any trousers for quite a while I keep a puppy oad and pad Under him on his chair.
I haven't like the fact that he has no trousers on so I bought some cheap thermal long John and cut the tops off . Now he wears them on his legs up to top he top and socks . . His new name sexy legs !!
For B I open up the bed covers and try to navigate him into the proper spot. He walks on his own to the bed (with me and walker in leading) , but once he sees it he, he sort of falls into it....which means he falls at the foot of it...quite a task to get him up to his pillow. Now that I have a side rail next to his pillow, I must say nightly, "Wait til your knee touches the rail, then get (fall ) in."
As I said once before, we are Queens of Reiteration!
After he is properly placed I secure his PEG Tube, I try to say a prayer (tho it happens less often than it should), and tuck him in.....for an hour...then the "I have to pee begins".....and it starts all over!!!!
So I do tuck B in., kiss him good night make sure covers are in place, turn on fan and turn off light.....and spend an hour to myself....usually......
A slide sheet may help you move B about in bed. We have two different sorts. One is a long piece of slippery fabric with the two ends sewn together. It's as long as C, nearly 6 ft. I push it under him, and pull the top layer which slides on the bottom layer, taking C with it. The other is two separate slippery sheets, again the top one slides on the bottom one.
I knowhow you feel. We are in the same boat. I now put a small stool that I got at ikea under his feet .Even a rubber bath mat under it to keep it from slipping. I hope it works for you.
So sorry Audrey that you are feeling like this. Like NannaB says it's the repetition, going over and over the same thing day and night, it does my head in too and I'm sure many others. Thinking of you, Nanny857 xxx. (💐💐)
So many ups and downs and scares and recoveries. I am glad there's been a turn for the better for your George. We lost a friend the other day to a sudden heart attack, a man just 55, out for a day off with his wife. I think she would envy us. It's such a struggle this way, but there are good times to cherish, however fleeting. Love to you, ec
Sometimes, I wish it had been quick, but then I know that though tiring both of us have many memories we would not have had if M had had a heart or brain attack instead of PSP. M can still respond and smile, though sleeping a lot more during day. Though I have done nothing about it PSP gives us time to grieve together.
I felt the same as that when she died after a severe stroke she lived tpfor three years . Even though very difficult time we had some laughs .on occasion , unfortunately no laughs or much response that is positive from John apart from the funny moments when he hallucinates .
He was trying to start the car we no longer had all night .
It's amazing how these infections drag you down and then a day or so on antibiotics and you are back to "normal", whatever normal is. I'm pleased things are looking brighter and hope that roller coaster gets stuck for quite a while before plummeting again? I expect the dog is pleased he is up again.
Yvonne glad George responding to the antibiotics. I cannot remember were you successful with CHC? If so you should have a named GP who should make regular contact and home visit as part of process. Hope infection does not return and he does not get antibiotic reactions.
I can imagine the dog's face on seeing master spraying food again must be pleased as punch.
We have CHC but don't have regular visits from GP. When I call if husband poorly we get whoever is doing home visits. Maybe it all depends on the county. I read about physio etc, but we don't get that either. I'm looking into paying for back and neck massages as my husband's head drops forward now and it seems such an uncomfortable position. As he no longer talks it's difficult to ascertain if he is in pain or not.
So glad George is feeling better - and on with the struggle! One of the major improvements I achieved for my dad was to change doctors. I don't know how easy it is where you are. We went from one who he had been with for a very long time (we had all been patients with his dad!) and treated every symptom in isolation, not even bothering to take blood pressure or other general health questions to one who visits every month, organized three primary care meetings here at home to go over my dad's global treatment (with family, PTs, visiting nurse rep, social worker, regional home help rep and I've asked the neurologist if she can join too). Night and day. Because you should not have to waste your energy that you need so badly for many other things!
Enjoy the spring that keeps wanting to arrive.. magnolia flowers here are in full bloom against a grey sky..
After my strop on the phone, when I rung last Friday doctor was here within 45 min, I was told that when I phone up George's name should flag up on the computer, took them I don't want priority just for them to see him not prescribe a prescription, for something they have not seen xxxxx
Yvonne I had a similar experience over the xmas period . John just wasn't good at all . Very little response , not able to talk or be understood when he was. Could open mouth to be fed or have fluid . Such a worry. Hallucinating .
I rang and three GPS rang me back after I asked them for a house visit ,. They just wouldn't come out .asked me to diagnose what was wrong !!!!
Prescribed antibiotics . I don't like the dam things , they all said it would Sao any infection he might have. Didn't even know if he had one. !
That gave him thrush and his bullous penthagoid flare up from them . .
Was in an even worse state . The gp did come out to look at that . Asked what they normally gave for the bullous I said last time he had steroids. Once again I had to diagnose , they knew very little about it ,
It took ages for all that to clear up .
I am now sat waiting for the carers . I have already hoisted him out onto commode and cleansed . Not much left to do ...
Good news looks as if I have the given the CHC but not heared officially ..
I have though it had been the end so many times Yvonne , I daresay when it does happen it wil,pl be a shock .it often is . Even after waiting for many many tears .
Onwards and upwards . When carers leave . D nurse be hear for INR check then the manager of the new care company coming for a meeting , at least the new company is an improvement .
Not washed myself or been in bathroom . Don't know when fit that in .
I am so happy you have been awarded the chc can't believe how long people have to wait for this, it is not fair, but so pleased for you🌹🌹🌹we would love to people we care for to get better, we are so tired, we are saving the government millions. Yvonne thank you. All for your lovely replies Yvonne 🌞🌞🌞🌞
Hi Yvonne, good on you for giving out to them on the phone, it's just a pity that we have to lose it in order to get a response. It's great news that George is much better now, hope he gives you a lot more laughs. Lots of love Nanny857 xx (🍷 Because you deserve it) 😉
Glad to hear he is feeling much better. Why oh why should you have to be on the case to get a doctor to visit, surely they should realise that he needs to be seen, not as if he just has a common cold. Good for you for getting things sorted. Love Kate xx
So glad to hear George is getting better. My husband Ron has spells that he can not do anything for himself than just as suddenly he is trying to get up out his chair and wants me to take him out. We had a collision with our wheelchair accessible van on Dec. 17 .We were not hurt other than some seatbelt soft tissue injuries. The problem was with our insurance company writing off our van and not allowing for the $22000.00 for the wheel conversion. If any of you out there have such a van make sure it is specified in your policy how much they will allow for the conversion part. A lady in Ontario who has the same van told me that they had to have a separate insurance for the conversion .We are in Alberta and were told we would be covered. It seems they just don't get that the van when new has to have the whole floor cut out and lowered. They seem to think you can just attach a little ramp and of you go. We hope to get it back this week. Thanks to our very handy son who did a lot of the repairs. It has been a long winter without transportation. We live in a small town with no wheelchair cabs or buses. Spring is here looking forward to getting out more.
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