Been up since 4.45 when my darling husband decided it was time to swing his legs over the bars of his bed. I saw him on the monitor so ran downstairs, ( 3rd time since midnight) and he refused to get his legs back into bed. Fearing another colitis "explosion" and as he was not getting back, I decided I'd have to get him on the commode. Unfortunately, after his acrobatics on the bar, he was too near the edge of the bed and gently slipped to the floor. After failing to get him onto the elk, I dialled 999 at 5.00 am. I wedged him round with pillows, put a fleece blanket over him, turned on the TV and ran upstairs to get dressed. I know I could have stayed in my PJs but feel more in control in proper clothes. The paramedics arrived just as I got my undies on, 12 minutes after my call. Trousers on and running downstairs putting my Tshirt on after spraying deodorant onto unwashed underarms, ugh! I let in two lovely paramedics. They used the Elk and got Colin onto the commode, no explosions so hopefully the steroids are kicking in. The carer came to shower him at 7 am and I am now also clean. I've given Colin his breakfast and I am now going to cook myself a full English fry up, toast, marmalade and coffee to follow, blow the calories, I need comfort food.
Not a good start to the day!: Been up since... - PSP Association
Not a good start to the day!
Good morning NanaB. Hope you feel a lot better now after a fry-up. Hopefully you can catch up with some sleep as well, always live in hope, you now how it goes. Good luck.
Love maddy
Thanks Maddy. Not used to fry ups but thought it too early for wine and chocolates. Feel a bit full and yucky now. Serves me right for feeling sorry for myself. A friend is coming at 10 and we are taking Colin to a coffee morning in a community building in the rec 5 minutes walk away. She said they do really scrummy cake ugh! I may pass on the cake. I'd planned on sleeping this afternoon but have just remembered Tesco are delivering to us between 3&4pm. It will have to be before I think.
I hope you have a good day.
Love Nanna B
Xx
hi nanna b
sorry bout your probs with colin but at least you can relax a little now
lol jill
NannaB sorry to hear your problems, hope you have a lovely afternoon. Sun is out try and have 40 winks before your shopping arrives xxxx Yvonne xxxxx
Hi NannaB - no not a good start to the week but breakfast sounded great !! Hope your day improves you just never know what is going to be thrown at you do you . V watched Countryfile last night and saw someone with Motor Neuron going up the hills in the Peak District in a motorised buggy - now she wants one and wants to go to the Peak District and got very tearful when I tried to explain that she might just not be able to drive one - she has extreme difficulty with the remote on the TV and can barely stand without support from me . Still I think she may have forgotten about it by today - especially as she is convinced we had burglars in the night .Georgepa
I saw that and thought I'd like one as well. Don't want what goes with it though. Colin went through a stage when things happened in the night. As soon as he stopped using the patches behind his ears to help with excess saliva, the hallucinations stopped.
Breakfast was good but I ate far more than I usually do in the morning and at 10 am I was bought a large piece of carrot cake at a village coffee morning. No lunch for me today. Colin had a butterfly cake soaked in Orange juice which I fed to him with a spoon. Someone asked him if he was enjoying it and his thumb went up. With our very early morning followed by a walk to the rec (him in his wheelchair) he is now sound asleep so it will be a late lunch for him as well.
Enjoy the rest of the day if you can.
Nanna B
Oh, thanks for the perspective, NannaB. I guess things aren't quite so bad for me! BUT - We managed to get turn the lights out finally at 11:00 last night, as dinner took forever, and getting to bed takes a good hour nowadays. Then he was up at 12:30, 1:45, 3:00, and 4:45, which means I was up, too, helping him to get to the bathroom, where he had about a 50% success rate. He nearly fell several times, so my arms are pretty achy this morning. And then I was up to get ready to go to work at 6:15, and here I am, but it's pretty clear to me that I am not going to be doing my duty very well at the office today. The lack of sleep is really getting to me. I don't know how much longer I can do it; but I really can't afford not to work. I have to get creative about this, but lack of sleep doesn't help the thought process, that's for sure.
On we go.
Spring is here, anyway. The snow is all gone except at the mountain peaks and in the lee of the stone walls, Daffodils are coming up, the maple trees are fuzzy with red buds and the bright blue scillas are here. I do love those!
Hurray for spring!
Love to all, Easterncedar
I managed to keep working for 6 months after diagnosis but nights like you have described got to me in the end.
Take care of yourself.
X
Thanks! I will try, but oh my temper does grab me!
Sorry, aren't we meant to lose to our temper? I thought it came with the territory. There is no way I can get through this, without shouting consistently! It's the only thing that keeps me sane, well that and the wine!!!!
Lots of love
Heady
Ha! Thank the gods for the grape! We went to a wine-tasting together last Friday. The shop is owned by a family friend of his, so it's a very low-key and jolly sort of event, and for the first time he went with his rolling walker, and could sit down. He got very rosy-cheeked on his little tastes. I stocked up!
Oh NannaB, that wine is going to taste good tonight!!! S actually slept through the night (very, very rare!). But of course that meant I was changing sheets at 6.30am, was not going to get up that early, managed to get an extra few hours after that! Needed those! Sometimes, I think I feel worse after a good nights sleep, must be because it highlights that I need a lot more sleep than I'm getting. Hope that movie rocks you gently off, very quickly! Make sure dinner is simple tonight!!!
Lots of love
Heady
Bit late with the commiseration. Hope you got some sleep.
Was there a full moon last night ? Chris got up about 5.30, decided he needed to cool his foot, so turned on the hot tap [ ? hot] and stood on one leg and tried to put the other foot in the washbasin.!!
He is 6 ft.1, with long legs but is also 81. Of course he fell, hurt his back and felt very sorry for himself.It took effort to get him up. When he was telling me he said " I need to be committed ! "
It was his day at the hospice so I persuaded him to go and they were all very amused at him thinking he could stand on one leg. He finished getting lots of attention and fuss. Hope that doesn't encourage him to try further feats !!
love, Jean
Oh dear! Sounds as if you could do with some sleep as well. I never got my afternoon nap. Tesco we're going to deliver between 3&4 so thought I'd doze after the delivery. At 3.45 I had a text to say there was a delay and the delivery would be between 3&5.30. At 5 another text said it would be between 3&7.30. It's a good job our evening meal isn't on the van.
I looked out last night to see if it was a full moon, it wasn't. I hope Chris isn't too bruised and also hope we all get a good night tonight.
Xxxx
Hi Jean, it wasn't full moon, I checked, but perhaps half moon, affects our loved ones and we have had enough by full moon!!! Love your story, although it wouldn't be so funny if he had done damage! What is it with PSP, that makes them think they are totally indestructible! S was falling all over the place last night. First, went head first, while I was trying to get him to the table for dinner, black eye starting! Second, fell backwards from his walker at about 11.00pm, hit his head, which started to swell, so had visions of a trip to A&E, "Warfarin!" But got the bag of Peas out and we sat for a while. Seemed OK, so finally got to bed just before midnight. So much for an early night!
Not sure about lots of attention, keeps them quite for a while, but the main problem is S then expects it from ME!!! Hey ho!
Lots of love
Heady
It seems to me that now, if C. gets an idea he does it without any assessment. When I question it he says I don't know and is clearly distressed. Its frustrating for both of us ! We can agree on something and he will do what he has agreed not to do almost immediately. He looks as puzzled as me.
He loves the fuss and does want it from me too. But it wouldn't be good for him, would it ? Would it ? Anyway its not me !!
I really want things as they used to be. We always talked and argued a lot . Its hard to lose the core of the relationship.
Oh dear. Off for a walk in the park. Sun shining.
Love, Jean
Oh my gosh, Heady, how do you keep your cool? I get so hyper from the fright adrenaline when he goes over I can barely contain myself. And often don't, I'm sorry to confess. My guy tipped out of his kitchen chair last night and luckily rolled through the door instead of hitting the frame with his head, and I just managed not to point out that I had tried to get him to sit squarely in the chair a few minutes before. I did pour myself a vodka and tonic though.
I think the simple answer to your question is I DONT!!!! I could probably be a bit more sympathetic if, like you, he did what I say! If, he didn't look at anything,bar his feet, if he didn't watch the TV, rather than concentrate on what he doing. I'm sure half his falls would stop!!! He knows that, I know that, but getting through to those PSP damaged brain cells is impossible! I wish I knew a way to bypass them, I know you can. S did when he broke his right wrist, his left hand was hardly working, but he regained full use of it again, because he had to! Slowly losing it again,but the fall was two years ago now.
What makes our loved ones think they can do anything without looking? S can still move his eyes quite well, slow yes, but they do still work, but he forgets to use them! I know he can't help it, but I'm afraid it doesn't stop the frustration!
Roll on wine o'clock!!!
Lots of love
Heady
I wished I like wine but I don't will have to find something which I like, I do quite like Tia Maria and baileys, but one drink and I have gone, pins and needles in my arms and legs, make the children laugh, I think I will go and put my pyjamas on and make myself a Tia Maria, everyone enjoy your wines and I hope you all get a good nights sleep. Yvonne xxxxxx
Enjoy your Tia Maria. My son turned up unexpectedly this evening, on his bike. He took from his ruck sack a bottle of Rioja and a bunch of hyacinths and tulips.....and he didn't even know about the 999 call this morning. Definitely brightened my evening, especially as the Tesco delivery , which should have arrived between 3 & 4, is still not here at 9.40 pm.
Sleep well.
X
Hi NannaB, hope Tesco have finally delivered. I would definitely complain, Of course, you last nights dinner in the shopping, with a poor sick husband, going hungry!!! etc! Etc! Etc!
Lots of love
Heady
hi nannab
tesco r being v naughty!
they should have delivered by now - i have all my shopping from ocado and they have never let me down even when the snow was really bad a fe w winters ago! and they are always on time if not a bit earlier!
so is it worth thinking of changing away fm tesco or would that be something too big to contemplate
lol jill
NannaB they should give you a big discount, lovely your son turning up with wine and flowers, they must love you very much, you seem like a wonderful caring person big hug from me. Yvonne xxxxxxx hope last night was better for you and you had a good night and the shopping turned, and then tesco even put it away for you x
THAT IS QUITE SHOCKING ABOUT TESCO -- YOU MUST MAKE THEM GIVE YOU A BIG DISCOUNT ON YOUR NEXT ORDER UNLESS YOU DECIDE TO TAKE JILL'S ADVICE !!
Lift/Track system is next piece of equipment.
Not knowing how to stand.
