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)