The FastDay Forum

Hi, I'm not sure if we already have a carer's tent, but I'm happy to be moved into the right tent if there is
I know there was a place on the old forum, but I'm a relative newbie to the yellow banneritis!
Anyway, I am mum to 3 girls - 22, 19 & 12(nearly 13). Our youngest has brain damage which has caused severe disabilities including epilepsy, cerebal palsy and blind.
She is a smashing kid, but hard work and I am tired and a bit grotty about things sometimes. People struggle to understand how tough it can be just to nip to the shops.
I always seem to turn to food when I'm stressed and I know I've got a stressful couple of months ahead - 3 doors are being removed tomorrow and above them knocked out ready for the through room hoisting to be fitted next Thursday. A man is coming out to discuss redesigning the bathroom in the morning and putting a bath back in, along with a shower table.
Before the 23 July there will be workman rehanging new super tall doors, frames and plastering, a new bathroom fitted, electrics moved in two rooms and a new stairlift rail fitted.
7 July there's a meeting to decide whether daughter can attend local autism respite centre
31 July youngest is having major knee surgery and hip psoas ligaments cut with a hospital stay, in another county
10 August her 13 birthday (one we never expected her to reach!)
31 August her respite centre of 7 years closes!
I am feeling very overwhelmed and keep looking for food, even when I know I am not hungry. I need to man up and get on with it and stop feeling sorry for myself
She doesn't feel sorry for herself and is quite a happy and cheeky young woman!

Yes there is one... chat-f12/carer-caregiver-respite-room-t9263-90.html

I'm in a similar though different boat. An Autistic lad of 17, an aspergers lad of 28 and a hubby in a wheelchair due to Rhumatoid Arthritis. Plus I had surgery myself 3 months ago for a prolapsed disk in my neck that would have had me paralysed in time. It never rains but it pours at times doesn't it.

In your situation think of the positives to the disruption. We had similar when our place was being ripped apart with adaptations to the bathrooms and a stairlift being put in, it wasn't as disruptive as you are having but it causes chaos with routine and eating. Generally we have found that builders contracted to do disabled adaptation are very careful about cleaning up after themselves each day as a trailing cord could cause untold problems. They will try and get the work done as quickly as possible with the least amount of disruption as possible.

As for yourself, keep low calorie snacks in the fridge if you can, I always found a big bowl of vegetable sticks gave the fingers and mouth something to do, gave a satisfying crunch and tasted good as well. Or a big bowl of raw, no mayo coleslaw has helped me out of mindless eating situations. Lastly don't try and be a saint, none of us are, do what you can for your immediate needs and no more. If someone comes around expecting tea and cakes, give them a cleaning cloth instead.

Hi, I'm not sure if we already have a carer's tent, but I'm happy to be moved into the right tent if there is
I know there was a place on the old forum, but I'm a relative newbie to the yellow banneritis!
Anyway, I am mum to 3 girls - 22, 19 & 12(nearly 13). Our youngest has brain damage which has caused severe disabilities including epilepsy, cerebal palsy and blind.
She is a smashing kid, but hard work and I am tired and a bit grotty about things sometimes. People struggle to understand how tough it can be just to nip to the shops.
I always seem to turn to food when I'm stressed and I know I've got a stressful couple of months ahead - 3 doors are being removed tomorrow and above them knocked out ready for the through room hoisting to be fitted next Thursday. A man is coming out to discuss redesigning the bathroom in the morning and putting a bath back in, along with a shower table.
Before the 23 July there will be workman rehanging new super tall doors, frames and plastering, a new bathroom fitted, electrics moved in two rooms and a new stairlift rail fitted.
7 July there's a meeting to decide whether daughter can attend local autism respite centre
31 July youngest is having major knee surgery and hip psoas ligaments cut with a hospital stay, in another county
10 August her 13 birthday (one we never expected her to reach!)
31 August her respite centre of 7 years closes!
I am feeling very overwhelmed and keep looking for food, even when I know I am not hungry. I need to man up and get on with it and stop feeling sorry for myself
She doesn't feel sorry for herself and is quite a happy and cheeky young woman!

Hi @Karenm - here we are - welcome. Tis late and I have to go to sleep. Catch you at the weekend as it my busiest week in the year work wise. Lx

And, here is the reply I gave to your original question...

Yes there is one... chat-f12/carer-caregiver-respite-room-t9263-90.html

I'm in a similar though different boat. An Autistic lad of 17, an aspergers lad of 28 and a hubby in a wheelchair due to Rhumatoid Arthritis. Plus I had surgery myself 3 months ago for a prolapsed disk in my neck that would have had me paralysed in time. It never rains but it pours at times doesn't it.

In your situation think of the positives to the disruption. We had similar when our place was being ripped apart with adaptations to the bathrooms and a stairlift being put in, it wasn't as disruptive as you are having but it causes chaos with routine and eating. Generally we have found that builders contracted to do disabled adaptation are very careful about cleaning up after themselves each day as a trailing cord could cause untold problems. They will try and get the work done as quickly as possible with the least amount of disruption as possible.

As for yourself, keep low calorie snacks in the fridge if you can, I always found a big bowl of vegetable sticks gave the fingers and mouth something to do, gave a satisfying crunch and tasted good as well. Or a big bowl of raw, no mayo coleslaw has helped me out of mindless eating situations. Lastly don't try and be a saint, none of us are, do what you can for your immediate needs and no more. If someone comes around expecting tea and cakes, give them a cleaning cloth instead.

This has been moved to the carers tent, can people please reply in there.

Crikey, @karenm - you have got an awful lot on your plate.

If there isn't already a tent for carers, there certainly should be. I totally relate to the compulsion to eat away pain, loneliness, depression etc. It has always been the only way I know how to be "kind" to myself.......except, of course, it isn't.

Other people's lives always seem so much more straightforward than our own - even if only on the surface. I am a great believer in talking things through & not bottling up feelings, so this could be a really helpful tent....

[carorees]

I've merged the two threads so we're all sorted now!

@hazelnut20 We do have a carer room, not a tent, but probably warmer in this weather What on earth has happened to the sun? I think it might be my fault as I mentioned yesterday that we needed to get a bit of rain to water everything!
I will be back to normal again in September, when she's back at school, she will be healed from surgery and will have a new respite placement. I just really struggle with change and not knowing. I find myself coming up with worst case scenarios.

Things are much better with ka now than for years. Her VNS is helping the bigger seizures, school are having some success with swiping her magnet for swearing and aggression

We are able to get out and about now, if OH is with us. We even had a swim in the sea on Saturday and middle daughter came with ka and I to see katyB at Eden on Saturday.
I feel guilty for whinging about how difficult the morning routine is when others have much more to do, but I feel tired a lot. I'm hoping 5:2 will help again with energy levels.

Positives for today so far...... Ka told me she loves me so very much, she told daddy she loves him lots like jelly tots and decided she would wear a coat.
The disruption in the house will result in a fantastically usable house and I am super super excited about getting a bath back (I'd not realised how much I would miss one when we agreed to let them remove it!) this time it might even be a normal sized bath we can fit in instead of a stupid Eco bath which only wet bits of us at a time eg head back and bum OR bum and feet OR elbows and knees. It was generally impossible to wet higher than hip height (I should have filmed the incident where my husband was wedged in by his shoulders £250 would've been very easy money)

Good morning tired carers. Have a peaceful day xxx xxx

I am sure 5:2 will help your energy levels soar @karenm - mine seem to have done just that. Also, the more in control of food I have become, the less depressed I have felt, which has been a great bonus.

Nowadays, I am slightly worried about becoming a bit too high on life! This is nice...and an unusual feeling for me. My life problems and issues haven't changed a jot...but my attitude towards them magically has....as has my mood. I find everything amusing and am full of bonhomie and goodwill to all men.....and women! For someone with a history of depression, low self esteem and comfort eating...I can't tell you what a joy this is!

This morning was not a good one for me. My autistic son worked himself up into a right paddy before his taxi arrived to take him to college. He had me following him around the house trying to clean his teeth as he complained loudly about me, shouting all the time. To the outsider, this would have looked rather comical! I often get covered in toothpaste.....because he never stops talking! I swear he even talks when swimming underwater!! He got angrily into his taxi proclaiming "I don't love you Mum!" over & over........grrrr! For some reason, you could almost set your watch by it, but Fridays are always the day he gets particularly worked up.

Add to that my youngest daughter answering back loads and wandering about like Dolly Daydream as usual, oblivious to the time & the imminent arrival of her school minibus.....and I felt like I had gone 10 rounds in a boxing ring.....all before 8.20am!

What do you do in these situations? Switch the kettle on & have a calming cup of tea and 10 mins to plan the day ahead.......great stuff!

In the scheme of things, I don't have that much to cope with. I share my son's care with my ex-husband....so I get respite from it being so "full-on". All things are relative & my issues would pale into insignificance against someone else's.....yet may be more than some other people have to deal with. I wouldn't be without my son for all the world...any more than I would be without my two daughters. All are unique...and give me so much. The fact they take rather a lot too....is all part of my remit as a Mum!

Glad there is a space here for sounding off slightly....

Take care all xx

I kept ka home from school yesterday. We suspect she has hayfever (the hint being the copious amount of snotty stuff covering her face) when I went into her she kept saying she was tired and want 5 more minutes, then didn't want breakfast. Some may think I give in too easily, but if she's not right and I send her in, I often get a call to pick her up! (And her seizures are worse if she's tired)
I am constantly tired but not sleeping great. I find the hardest bits with ka is when she hurts me. I don't even know for sure she realises what hurt is, but she's got a mean pinch on her! OH asks why I let her hurt me, unfortunately, if I'm in the middle of changing her nappy, I need to carry on and can't move away. She knows this, the little monkey!
She does make me smile (and cry), but I don't think I've ever been loved as much as she loves me (except by Albert - he's my 8ish month old rescue whippet who loves me so much that he's a pest )
I have to keep on keeping on and smiling instead of crying xxx

TMI warning!!!
Stinky child
I knew when I started up the stairs that there was a mess waiting for me. Rubber gloves and shower to the rescue. I hate it when she removes her nappy. Onesies on back to front again! I'd hoped she'd gotten over this nasty habit, but the sensory issues remain! She loves the tabs on her nappy - they're Velcro and sticky all in one! I need to see what I can knock up for her on the sewing machine.
Just gotta man up, clean up and get on with it

Have you thought about Home Education for Ka? Or does the school break give you much needed respite?

I had to take Martyn out when he was 10.5 years old as school was damaging him and he wasn't learning anything. It was amazing how quickly he lost a LOT of the really bad habits (not habits, actions/ reactions?) he had once he realised he wasn't going back. The meltdowns decreased from 3 to 8 a day to once a month. The terror at going back to school has never really left him, but I can now get him on school premises as long as he knows he's there for something other than schooling.

@julieathome, ka has always loved school. She is in the PMLD class of a special school. Her disabilities are quite severe, but the least severe in her class.
She is blind, so can't see unwanted behaviour. Though she was making some determined retching noises in the shower. She's a mimic and has echolalia. There's a young man, used to be in her class, who taught her screaming and retching. Unfortunately he's now back with her, though separated by a door part of the time.
The nappy thing is more about the tabs than anything else. I'm going to cut some tabs and stitch them onto fabric for her. See if that fulfils her need!
In reality, she's not at school full time. She's only managed 2 full weeks since nov. She always has a day or two home. I love having her home, but it's exhausting. I even appreciate the fact they do one of her nappy changes! They do her physio routine, get her wandering around school in her walker and just got her back in her standing frame (though this must be painful with her bent legs.)
She loves people and gets quite nasty with me when she's had enough of me.
I had considered home schooling, but I think we'd soon get sick of each other
She doesn't follow the national curriculum (she's on Pscale 5) so everything is individually tailored around each child.
I've just read this back and it looks like I'm trying to justify why she goes to school. In reality the simple answer is that she loves it!
I have a few friends whose children really struggle with school. One young man is now home schooled and loves it. They attend a local home schooling group and A is accepted by all of the children. His mum is totally exhausted though as she doesn't get a break!
I really admire those of you with the strength to home school!
Take care of yourselves carers xxx xxx

I fully understand, I wouldn't have taken Martyn out if he had been coping, but he wasn't.

A friend of mine started making sensory blankets for dementia patients, but stopped when her very first batch was copied and sold on etsy. The general idea is to make a patchworked blanket with different materials, such as cord, silk, velvet, hessian and then add in extras like stuffing sections with different materials like crinkly plastic, beans etc. A bit like the kiddy teddy bears with a crinkly left foot and heavy seeded right foot. She also added laces and loops and ties and big buttons. All sorts of things so that a dementia patient could keep their hands busy. They were very useful for special needs patients too as it stopped a lot of the self harm actions like pinching, picking lips and scratching. I've just hunted and can't find the photo of the one she did for my Grandmother.

Edit. They were small lap blanket sized, but could be made bigger or smaller to suit your needs.

I fully understand, I wouldn't have taken Martyn out if he had been coping, but he wasn't.

A friend of mine started making sensory blankets for dementia patients, but stopped when her very first batch was copied and sold on etsy. The general idea is to make a patchworked blanket with different materials, such as cord, silk, velvet, hessian and then add in extras like stuffing sections with different materials like crinkly plastic, beans etc. A bit like the kiddy teddy bears with a crinkly left foot and heavy seeded right foot. She also added laces and loops and ties and big buttons. All sorts of things so that a dementia patient could keep their hands busy. They were very useful for special needs patients too as it stopped a lot of the self harm actions like pinching, picking lips and scratching. I've just hunted and can't find the photo of the one she did for my Grandmother.

Edit. They were small lap blanket sized, but could be made bigger or smaller to suit your needs.

That sounds good. I want to make her a weighted blanket so perhaps I can combine the two.......hmmmmmm. Lots of ideas going round now tyx