The saga of the hoist continues. Legs now very weak, a full hoist was ordered for delivery on Christmas Eve. Did it arrive, of course not. Santa doesn't deliver hoists. On 27 th December we were unable to get Colin out of bed as his legs wouldn't work so from then on, he has been bed bound and having bed baths. After many phone calls this week to the equipment store by the OT and DN, on Monday the OT gave me the store number and order number and suggested I ring them as they may realise how important it was if a carer rang. I did and after hanging on for ages while the lady went away to "look into it", she returned to say it would be with us the next day, Tuesday.
Tuesday came and at 11am a huge van stopped outside. I was on the phone to a friend at the time and said goodbye as the hoist had finally come. The delivery man came to the door and handed me 2 packages and a form to sign. I asked where the hoist was and he said it was out of stock but he had bought the slings. I was not a happy bunny but took the slings and threw them on the chair. A few minutes later the DN arrived and I told her what had happened. She was furious and then looked at the slings and realised they were two slide sheets which we already have. Last night the carer and I risked getting C out if bed. We managed it by working quickly before his legs collapsed. He had a lovely shower and hair wash and even managed a tiny smile, more with his eyes than mouth. He sat in his chair for a while and was more like his own self.
Today I risked it on my own as he grunted a yes when I asked him if he wanted to go to the Hospice day centre, having missed 2 as Christmas and New Year both fell on Fridays. I managed with difficulty and got him there but forgot his medication so took it to him at lunchtime. Everyone was sitting at tables eating but there was no sign of Colin. I stood looking around when a nurse came running up to me saying they couldn't get in touch with me ( no idea why, mobile in my pocket) and Colin was having a crisis. He was in a room in his wheelchair making his rutting deer noise with a nurse sucking out his throat with a thin tube but nothing was coming up. He was shaking and arching his back. Another nurse came in and said they had found him a bed on the ward. He clung onto my hands shaking violently and was very red and hot. I gave him a kiss and spoke to him as he crushed my hands and I realised he was scared. I told him not to worry and that I'd take him home. I was told the bed was ready but I said I'd rather take him so they agreed providing a nurse followed me. When we were in the car he stopped the noise and relaxed. I asked him if he was scared he was going to be kept in and he very clearly said yes. He is asleep now, breathing normally. The nurse was here for some time and couldn't believe how he had changed, calm and relaxed after his "crisis". They said it had worried them when he started making the noise and thought he was choking and as nothing was being sucked up, thought something must be caught lower down, hence the long tube. I told her he was scared of being kept in and she said they wouldn't have kept him, just let him lie down for a bit. If they had said that to him he may not have panicked. Crisis over.
I have also had loads of phonecalls with all the agencies involved about a PEG and he has been booked to have it the week after next.
I've lost count of the number of phone conversations I've had this week and professionals I have had conversations with and am very glad it's Friday. Only about 2 hours until wine o'clock. Have a good weekend all.
From a very drained Nanna B (Bev)
🍷x
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NannaB, I was crying while I read your post. You are doing so well with where I know we are headed. Blessings to you.
Oh, Bev I feel so distressed for you but also really angry. When I think of how well you have coped and are let down by ineffective back-up. Its disgraceful.
Give Colin a hug and a big one for you. I hope they all get off their backsides and back you.
I am screaming with the injustice of it all. Wish i lived close to you because you could of borrowed ours. The hospital insisted that we needed a hoist and carers before they would allow Brian out of hospital (18 months ago) after he had pneumonia. The hoist has been serviced after we had had it 6 months replaced after another 6 months. Yet in all the time we have had it i think it has been used 3 times.
We had a blip a few weeks ago and he was having trouble useing the rotastand but we have got over that and he isn't as steady as we would like but we are still managing. I am dreading the time that we've got to hoist him full time.
I hope and pray that you get your hoist soon. Janexx
There must be loads of equipment unused in homes, taking up space. Apparently, due to a change of supplier, collections are delayed as well as deliveries. When we do get the hoist, we will still have the standing one until it's collected. Our house is getting very full of large pieces of equipment. I'm very pleased we didn't downsize when our youngest son left home.
Bev there is thousands of pounds worth of equipment that is not returned.
I do feel guilty for having the hoist sitting here gathering dust and you in desperate need of one. But i am scared to send it back because i know as soon as it goes back we will need it.
Even the hoist man said better to have it and not need it then need it and not have it.
The OT has told me to use it at least once a week to perfect the techniques. So really stuck between a rock and a hard place.
We are just trickling in with medical equiptment ie suction machine and walker and now the months worth of Jevety ...took me about two hours to cut in half the 12.5 cases of 12 cans per case to fit them neatly in a semi small kitchen....but it worked...I can't imagine what the thing (hoist) looks like...I'll have to google it! I know one thing, B's knees are starting to freeze (sorry for the rhymy words) or buckle...especially when he's tired....So instead of falling like a tree; he now buckles to the floor, genuinely clueless how to remedy it unless I tell him to just relax and stop trying to walk recenter etc ...boy im blathering on...
Oh NannaB what an awful time you have had, but you always manage the best and I have so much respect for you. I just hope I have the same strength and determination as you have when W is further down this terrible road. Much love to you and Colin and I hope hoist arrives sooner rather than later and 'life' becomes much easier for you both. Nanny857. xx ps hope you enjoy that glass of wine. 🍷🍷😉
I'm sure you will stay strong Nanny857, with a few wobbles like me perhaps. The thing I find with PSP, it isprogressing over years that I get used to the deterioration. If C had been disabled by a stroke or accident it would have been sudden and I think that would have thrown me.
I did enjoy my one glass of wine.....and the cappucino with rather a large shot of Bailys in it.
Oh NannaB sorry to hear all your problems this week, can't believe you are still waiting for the hoist, disgusting, and felt so sad when Colin was so upset, I think they are frightened of not being able to come home, George keeps saying do t abandon me, I am only in the other room. Feel so sad for you let's hope next week, brings all the things you are waiting for love to you and Colin xxxxxx🌹🌹🌹🌹🍷🍷🍷🍷enjoy your wine xxxx
Well done NannaB - another storm ridden out with fortitude and courage -give the supply people some stick and also your OT it's her /his job to chase up these things- that's what they are paid for .We too now have a full hoist - it looks like a medieval torture machine and me getting V into the sling is a sight to behold . I got caught up in it pressed the raise button and my feet were off the ground in a flash and my trousers were up somewhere round my ears . V however remained firmly seated - still practice makes perfect ........I hope !!!
The one you have to download on your computer, if you managed to get that to work, because it's manual is on-line, so you need to know how to work the computer,before getting the manual, telling you how to work it, so a total waste of time!!!
Have you been spying on me Heady? I bought a new laptop at the end of last year. I put it in a safe place when I went out and the Borrowers took it. They bought it back last night and I thought I'd watch the Christmas edition of Call the Midwife. I hadn't a clue how to do it. I couldn't find Google so couldn't download the manual or get anything else. Before the Borrowers took it, I was very proud of myself for downloading Windows 10 but I haven't got the manual for that. I got fed up in the end and watched it on my iPad. I should have been able to watch it on my TV but haven't got the manual for that either.
Next time I go into town I'm going to get Windows 10 for idiots. Or I suppose I can order it online....using IPad not laptop.
I know what you mean. I do so well doing familiar things on-line but quickly forget how to do things.
Then I find myself struggling, thinking " others can do this so you can !" It doesn't always work and its especially humbling when a grandchild, goes " click click " and gets it and you still don't know what they did !!!
I am also quite gifted in hiding things from myself in safe places !!
That's what I've found Jean, I have to keep doing things or I forget them. At work I used to collate the childrens' attainment levels and put onto spreadsheets and also show them as graphs, this was before you could get the templates.....in the olden days. I even did power point presentations. Yesterday I sat for ages with my nice new laptop trying to find the back space. Crazy isn't it?
I have no problem finding my safe places. It's those pesky Borrowers who keep moving things.
Sounds as though I may be in for some fun then Georgepa. With the standing hoist I managed to lift the commode as well, with C still sitting on it. I tried to picture you in the air with your trousers round your ears, and what a picture it was!
hi nanna b and colin hang in there mates you know what the system is like
mates not always but to often its up the creek without a paddle\ and colin hang in there mate as one psp bloke to ,another i am holding on just like you so do your best for me won't you matey I'm counting on you take care peterjones
Oh Bev I am soooo sorrrry for you and Colin! I cannot believe you are still hung out on this hoist!!! Did you call those people after that guy showed up with less than nothing?
Can you go elsewhere for this machine.....This has been way too long....you are not waiting for a regular piece of furniture. This lackadaisical behavior is impeding someones quality of life; safety; and the safety of their carer.... and this fact should be heavily reminded to those who sell or rent this product! Perhaps your govt agency should be notified of this companies indolence...as if you haven't enough to do!
Again I am sorry.
On the PEG note, B is doing very well with his tube. He also has the suction machine so his choking has gone WAY down......i say this to encourage you to get the tube....it is very easy to use. B gained 4 lbs in 16 days....metric that would be almost 2kg!
NannaB, You are always someone who looks for the positive, and finds it. You always have wise and comforting words for those in need (and aren't we all in need) I wish I had those same kind of words for you. I am sending you all some hugs, and if you can't raise your man let me just raise your hopes that your patience and integrity will be the last thing standing when all is said and done!
Oh AVB, your posts are always of comfort, encouraging, helpful, whatever is needed at the time, you give it. Today I need hugs and I've just received yours. Thankyou.
Colin has a suction machine and I agree with you, it has been of great benefit. Thanks for the reassurance re the PEG. We saw the specialist about it in September 2014 but he wouldn't do the proceedure then as he said the risk was too high and C wasn't undernourished. Now he is and isn't getting enough fluid, although he is still eating, very slowly but rarely choking. The specialist still wasn't happy about doing it as he is eating. I told him that the hospice, speech therapist, DN and dietision had all mentioned it so he said he would contact them all and get their opinion as they know him better than he does. He came back to me the next day saying all the others said if C doesn't have it inserted now, it will soon be too late, the window of opportunity will be closed. It's very reassuring to hear from folk like you who have had positive experiences as the doctor owing the proceedure wasn't very reassuring at all.
Hi NannaB the PEG can be fitted anytime, it can be supplement to normal eating or as in M's case she can have all nutrition and fluids by the PEG but small treats via mouth. I would suggest you keep on at DN, Nutricianist, SALT team etc again and get a PEG if possible before he starts to lose body weight.
M has had PEG for 9 months with only small issues now solved (tube catching clothing and coming out twice) by taping tube after feeds to her tummy. She has stabilised weight and only chokes occasionally on saliva if drool not leak out, I have found that thick saliva usually means I have not given enough fluids via PEG and by that I mean 10 ml extra water each feed in winter and 20 in summer.
I had another phonecall from the hospital doctor yesterday. He has spoken to all the specialists invoved with C and they all agreed it should be done ASAP so he has arranged it for 20th Jan. Apparently the "HENS" take over care after it is fitted. Sounds interesting. Never thought to ask what HENS stands for, if anything. Do you have HENS visiting?
Hi NannaB HENS are the home nutrition support teams, help you ensure the PEG is sorted, your feeding regime is correct and weight is maintained. They will "cluck" around but are very helpful. Depending on his PEG something I learned and they quite often ignore or say not required is the care of the tube between feeds.
If C is like M he will try and play with the tube and wrap it in his shirt/trouser band which can lead to inadvertent tube removal, which means A&E visit for tube reinsert, to avoid this always tape the tube end to his/her tummy valve opening upward it saves accidents.
M still plays with it but as the tape resists she stops before pulling.
Glad it has been arranged hope it is successful good luck Tim
Thanks for that Tim. I remember you saying before about the playing with the tube and C is a fiddler so will take your advice. I have already been told about keeping the tube clean but can't really picture it all yet. Something else to learn.
Give me a shout if you want any ideas or support, I will reply but may be a time. If he is to be Bolus fed: use a syringe to manually feed, I have the does and some don'ts if he is to be machine fed easier on you as only once a day usually overnight I have no information. (Ketchupman in States does though).
If bolus bit like baby feeding in it is 3 hrly 4 times a day what I have is two Pyrex measuring jugs one for water one for feed and some old glasses for medication prep, paper kitchen towels. I always feed M in the kitchen get a routine for where is best for you and C. After feeding I put the tube into the Water jug rinse it round squeeze and suck up water to replace any lingering feed, dry tube with paper towel before taping it up. Take care with jug as can be cold to the tummy if rested on tummy M giggles if I do that.
There will be accidents with feed spraying out from syringe backwards covering you and the walls Etc. DO NOT WORRY it happens. Best to wipe up quickly with damp towels as once dry feed is like cement and difficult to remove.
Also to keep tube clear at least weekly but better more often instead of final water flush use fizzy liquid, I have found lemonade or Coke best (tried soda water but not very effective).
Better stop or I will put you off, but do not worry PEG should be best thing for C.
It's easy and all the nutrient in the Jevity 1.5, will get Colin in as top form as he can be....
Ketchupman was talking about a belt that fully covers and anchors the tube to the stomach...I have not tried it , but this should be better than tape and certainly more out of the a fiddlers way!
Thanks for that Tim. When the HENS have demonstrated what has to be done I'll let you know so you can give me the do's and don't. I'm glad you have told me about the feed spraying out of the syringe. I'll be prepared for that one. Life is never boring with PSP is it?
Has Colin lost much wt? Even though they can "eat" it may be of little use! (B could eat VERY slowly and not without choking) Like I said, he lost 20 lbs! When dr saw this, B was getting a new orifice within a week and this was on Dec. 22! ( think) right before Xmas! Again though I had to tell the dr that he needed the PEG....she had to see it for herself.....
again im blathering ...I'm just glad you have a team....though perhaps they need to all have lunch together and talk about their patients and figure out what to do next...I know they're busy.....
Good Luck Darlin....Remember YOU are Colins greatest advocate so fear not letting people know what and wherefore
AVB like that B is accepting the PEG and beginning to thrive, long may it continue. Agree about looking for kit privately but from my experience once you go down that route some in the NHS expects you to continue. We had a ceiling hoist fitted over the bed when house being adapted but had to do it privately, since then the usual response from OT is why not consider buying your own, but quickly brings in the kit or swaps it so there is a balance to watch.
NannaB so sorry to read your experience, definitely something you could do without sounds as though the store is not doing their job. If it is a local gov store (ours is a shared facility but run by the council) not NHS you can give Head of Social Services a rocket. If NHS controlled stores contact NHS ombudsman - CAB used to help. Hope C continues to be relaxed at home and that the hospice can take him back. Best wishes Tim
Problems have arisen as the NHS in this area have changed suppliers. Apparently the previous contract expired at the end of December but the contractors failed to carry out any deliveries or collections during the 2 weeks prior to Christmas. The new surpliers contract started 1st Jan. The latest good news, I think/hope is that the hoist is "definitely" being delivered on Monday. I won't hold my breath.
Hi NannaB it is heart breaking to hear of your difficulties with the authorities as if you do not have it hard enough already, the way you manage everything is wonderful and your strength in difficult situations is more than admirable, I only hope I can find some of your strength when things get more difficult for Horace, I must share a beautiful moment with you that happened in our house yesterday. My eldest grand daughter called yesterday so I used this opportunity to go and do a shop at the local Tesco, Horace used to bring flowers home for me in the good years and after filling my trolley with nice soft foods for him I stopped to look at the flowers, there in a bucket I saw daffodils only £1 per bunch, they reminded me of the spring coming and so I bought myself some, when I got home I showed them to Horace, and was telling him how beautiful I thought they were. Horace finds it very difficult to speak a clear sentence now, but with a smile on his face he went into his pocket and handed me a £1 and said "from me" I had all on to stop the tears and my grand daughter had to leave the room feeling so upset for him , but for me it was a moment of how things used to be. Another fabulous thing is that my grand daughter said she realy enjoyed her time with Horace and she is going to call most Friday's when she can to let me go out for a couple of hours, I asked Horace if he had enjoyed her company and it was a 'two thumbs up' which always means a huge yes, so actions can say so much more than words and I send you all my love and loads of hugs to get you through keep on being strong you are our inspiration
Oh that bought a tear to my eye. It must have been a wonderful moment. Good things do still happen even when it looks so bleak. It's so good of your grand daughter to spend time with Horace and give you a break. It's amazing how a little time away can make things seem a bit better.
Roll on the Spring and better weather when we can get out into the parks and gardens and see hosts of golden daffodils.
I have just had a few tears.....thinking firstly of you NannaB,and the extra hardships you are facing waiting for the hoist etc...so uneccessary and then reading all the posts and replies showing how wonderfully supportive everyone is here on this site and lastly reading dear Chrissmitch' and the £1 for the daffodils that her husband wanted to give her....that was so beautiful.....and I am crying now.........xxxxxxto you all
I often have tears in my eyes when I read the posts here but sometimes they are happy tears as when I read Chrissmitch's daffodil story. good things still happen.
Dear NannaB, I felt so sad and cross that you have had such a delay getting your hoist delivered as if you don't have enough to cope with. I also felt for both of you when Colin panicked that he wasn't going back home with you, I can only begin to imagine how you both felt and understand his sense of abandonment when you are his rock. This horrible disease gets to both of you one way or another. I do hope that hoist arrives very soon and send my love to both of you, you are such an inspiration Bev. Xx
Oh NannaB, what a week for you. WHY, OH WHY, is everything so hard for us? As if caring for your loved one, 24/7, with this evil disease, is not enough!!! It really makes you think some very unladylike thoughts about these people!
I have been offline, so I hope you have or about to have this hoist delivered very soon. Although, from GeorgePa's description, sounds as if it could be fun in your household for a while. I think my worry would be, not so much, getting S up, but not being able to lower him down!!! No doubt, both occur, with too much regularity!!!!
Nanna, again you come across as someone in total control, but we all know what you are thinking and the screams that have/want come out of you. We have heard you and sending you as much love and strength that is possible to get across the ether. You WILL get through this and the trials of having Colin fitted with the PEG.
There are some occasions, that Wine O'clock can be bought forward! No matter what that silly woman at the Ministry of Health says. She is definitely NOT caring for a loved one and have to deal with our "wonderful" NHS!!!!
You are right about the screams Heady but I think I am a bit of a pessimist so when things go wrong, I've expected them to, so I don't seem to react in quite the same way as some of my friends do. It's just a very big bonus when they go right. When our boys were younger one of them asked me if I could make bad things happen as I would say, " If you do that then......will happen", so when one did break his leg after jumping from a height, my reaction was to say, " Well I told you that would happen didn't I", much to the astonishment of other mothers standing by who were panicking. I felt very sorry for him and the pain he was in but I thought it was going to happen so had my, what will I do when it does moments before hand. Common sense really...small boys+tall structures=disaster.
NHS + equipment, treatment etc = delays.
We should get the hoist tomorrow but I'm not banking on it. I have a bottle of champagne given to us at Christmas and family here at the weekend so will crack it open if it arrives. If not I'll stick to wine at any o'clock.
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the time has come - 3 years from diagnosis
Severe leaning - new way to get patient into bed.
