The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

@Lougle It is! The first two years, it was controlled by one drug, but then it went of control - she was having a cluster of 5 - 10 focal seizures every few hours, so maybe 350 a week. They put her on 2/3/4 drugs, which controlled them down to about 6 seizures a day. For me, the drop attacks are the worst, because of the injuries and there’s no warning. She only has tonic clonics occasionally.

Every night, we go to bed, knowing she could die in the night of SUDEP, and every day, we know she could die today, say in status epilepticus or breaking her neck falling down stairs, etc. Several times, we have watched, we thought her being killed in a drop attack - like when she falls onto her neck bent. It’s hard in a state of shock, to snap into action and make a decision whether to call 999 or take her to A & E ourselves.

What’s hardest is seeing the cognitive deterioration in her, and it’s been ongoing since it went out of control over fifteen years ago.

@LathkillDale that sounds tough. It’s hard knowing there isn’t a magic cure, knowing what the future holds is uncertain and watching the deterioration in function.

@Lougle for the sleep issue, would something like a Fitbit to track sleep help or would DD1 become obsessive?

DS1 has been discharged. He has a couple of follow up appointments later in the week.

DD2’s PIP AR1 form has landed. Another thing to add to the to-do list.

Great news that he's been discharged @inthequietofdawn but commiserations about the PIP form

We do have a withings sleep monitor under her mattress but I'm not convinced it's brilliant. I felt she might obsess about the Fitbit.

@lougle what about a camera in DD1’s room?

So sorry @LathkillDale that must be frightening and difficult.

Great DS1 has been discharged @inthequietofdawn

We are still waiting for PIP renewal form here - it was from start of June. I was relieved it didn't come when we were away. Cat is at the vets at the moment and waiting to get him home, been sedated for first time.

Would I need some sort of permission to do that?

@Lougle if DD has capacity, you should involve her, but you don’t need permission from e.g. the CoP, social care or the NHS. We have several cameras around the house. Some are on all the time. Others only at certain times when they are required. Others working in the house are aware there are cameras. I know lots of other families, including families with older disabled adult DC, who have cameras for one reason or another.

@Tulipandmagnolia you probably have a couple of months before you receive the form. Most receive them 6-10 months before.

inthequietofdawn good news that Ds1 has been discharged but a pity you didn't have time to draw breath before the PIP form landed.

LathkillDale that is a really difficult situation to deal with.

I hope he's home soon!

Thanks @inthequietofdawn

Thanks @Lougle The cat is home now but the vet cut a lot of his fluff off including 2/3rds of his magnificent tail and he is glaring at DH and hiding. He let me cuddle him. I didn't expect them to do that though he has been struggling in the heat so it will help with that at least. His tail looks ridiculous, about half an inch thick until the last third when it has about 5 inches of fluff all around. He got matted when we were on holiday.

@inthequietofdawn camera is a no. I gently raised the subject of DD1 finding it hard to know whether she's slept and that some people use cameras to see if they've slept. She immediately said "Yeah, but I'm terrified of them though, aren't I? That's why I don't play that game any more." (She used to play Hello Neighbour but we had to stop it because it made her scared).

From her? Not from anyone else, it's your house.
I know DS is a minor and he has epilepsy, we have a camera in his room and one in the play room. We let babysitters and the PA know it's there, I think we also let the door fitters know when they were in the play room.

DS went to a holiday club today, just for an hour but hopefully he can go for longer later in the week. He was a bit nervous but calm though apparently didn't talk much.

He's just been using some anti acne wash and has written out the instructions to put on the bathroom wall. He really struggled with my verbal instructions but he likes to write lists of everything!

Thanks, all.

DD1 doesn’t have capacity. It has been agreed, it’s in her best interests that there is video, audio and mattress monitoring in her room at the care home, so long as the videos aren’t kept. There are two night staff to watch over her, and the other residents on the house.

We just have an audio monitor in her bedroom at home, because we can’t stay awake all night to watch over her. I have heard mattress monitoring is not very reliable, because ordinary movements in bed like turning over, can set it off.

She has a phobia about jewellery, otherwise, I’d put my smart watch on her wrist at night - it supposedly monitors sleep; and it can detect falls.

"From her? Not from anyone else, it's your house."

She's a vulnerable adult with fluctuating capacity, who is very easily manipulated. I just wanted to be sure that I would not be putting myself in a position where DD1 mentioned it, then said something like 'I really hate cameras' (very possible even if she had previously been completely enthusiastic and asked for 50 in her room), then someone thought I was exercising inappropriate control over her. I have good reason for being cautious.

That said, it's irrelevant, because DD1 has clearly linked cameras to the game that she found upsetting, so it's a no, no matter how useful the data/observation would be.

@Lougle I know you said you think DD1 would obsess over a Fitbit, but do you think the same would apply to something more medical? I’m thinking of a referral for an actigraphy study. You could focus on it being about knowing how to help her rather than on sleep.

Thank you - I'll ask the GP. I did see the Garmin Index, which is just a black band on the upper arm. That could work but I'm not sure how accurate all these things are. The Fitbit Sense 2 is meant to be good, but will she obsess?

@Lougle what would the plan be if DD1 hadn’t slept? Is it to get a feel for how sleep affects her MH and pain reporting? Sorry if this was already posted and I missed it. Sleep remains a mystery to me. Go DD3 for getting out.

@LathkillDale im late to the honks for your reality of health and the decline in function of your DD1 and the undoubted tremendous difficulties she and you face on a daily basis. I hope her ribs are mending well.

@inthequietofdawn thinking of DS1 and the next few days of heat as he recovers. It’s never good timing for a heatwave.

@Wellzizizbetter losing people is so exposing and sad. Sorry for your loss.

@drspouse I didn’t see your thread but randoms can be so mean.

@Tulipandmagnolia cats with bits shaved off are the strangest sight. I imagine Floof’s looks dramatic as his hair is so long.

DD coped well while we were away but a big mask has been taken off tonight.

Glad you managed to get away @TheGoodCat

Cat is back to his normal super cuddly, very cheerful self though wanted to catch up on cuddles and eating during the night, its lovely to see him happy again, he had been hiding and glaring at DH who took him to the vets. Now we have reassured him he's still beautiful and sedation has worn off he's fine. He does look ridiculous and I wasn't expecting that at all though he's been so hot in the heat it's probably better for next couple of months and at least it will make hoovering a lot easier. I just wish she had left the tail. She's left the last third of tail which looks ridiculous like he's been to an Essex poodle parlour.

It feels a bit strange having old shed still here and DH retired. I think I had planned to end of Sri Lanka and then planned shed for after and now I am what do we do for the next 30 years. But there's plenty we can do and its just getting into a new routine and its lovely things can get done faster and we can go out anytime of day and any day of week. I don't really want to start shed until we see tree is down successfully and maybe roof done if we are doing old shed instead of new. I want to look at old shed today with DH to see how long could last if we painted it, put new roof and maybe flooring and possibly changed the window - I think that might cost c£2k, not sure all I know is taking roof off is £540 plus vat, would have thought adding new one would be similar or slightly more then its just materials though window will depend - its currently vinyl but gone hazy with age. It doesn't have a frame. The new shed including taking down old one and us buying paint would cost about £9k. The amount of work for us isn't that different, its just how long each would last, end result, which DS would prefer and value for money, that's the economist in me, I need a VFM assessment 😂. DS seems to prefer old as is but don't want to leave asbestos roof and he does like me making it pretty and house like. I don't think either will add to house value, was just looking at housing market round here last night and its terrible but new one could last up to 50 years though I don't know with elephant DS, he might do things like use gutter as ninja warrior, try and climb through windows. I think DS would love the new one once it arrived but its whether he would cooperate with that. It only takes them 90 mins to put up so not bad, I might tell DS that as he might be worried about that.

@TheGoodCat I'm so happy that you managed to get away! I hope you can stick DD back together. I expect she has a huge mix of pride and wonder that she managed, alongside fear for what that means.

In terms of sleep, I think it would be useful if we could know whether DD1's reported sleep tallies with objective sleep, and whether her symptoms change because of it. She has 6mg melatonin at night but she often says she didn't sleep. If she really didn't sleep, we might need to make changes. If she slept but just doesn't feel refreshed, that might mean something else.

@Tulipandmagnolia the shed sounds like it has become tangled up with all the uncertainty about the future for all of you. It's a hard time with lots of adjustment. I hope you get something done soon and DS is happy with it.

@Lougle my DS tells us he never sleeps - it's become a habit - he repeats it at every doctor's appointment. In fact though he doesn't get to sleep that easily he's calm and in his room, and never wakes in the night. I think he just believes he's someone who's too awake to sleep IYSWIM.

It would be helpful to know if she's genuinely not sleeping, or is disturbed in the night, because she needs naps in the day. If they are as a result of poor sleep at night, that gives a different picture to needing a full night's sleep plus naps.

@TheGoodCat Hurrah for a successful night away! I hope the destabilising effect is short lived and DD is on more of an even keel soon.

TheGoodCat great that you and DD managed a night away. I hope any fall out is short lived.

lougle I missed Dd3's solo expeditions. That is great progress.
DD1's sleep issues sound really tricky to solve.

tulipandmagnolia sorry that you are having so many issues with the shed. I hope you can find a good way through the uncertainties.

@Lougle If you ever decided to pursue a camera at night, given DD has fluctuating capacity, could you arrange a best interests meeting with her social worker and any other professional you could involve? If it’s been agreed in the presence of SS, nobody could point the finger at you, over inappropriate control, whatever?

Could you get a referral to a sleep disorder clinic for DD? We only found out, when DD1 had video telemetry 24/7, that her EEGs are so abnormal, her brain shows no normal sleep phenomenon at all. They weren’t sure she went to sleep, although they had to assume she must do!

It explains why she’s grumpy in the mornings and needs naps in the day. We’d have never have known that, without some sort of test.

Thanks @LathkillDale I think that DD1 would be distressed by the camera. I had forgotten all about Hello Neighbour (it was about 6 years ago) but DD1 hasn't. DD1 has recently started getting dressed in the bathroom and she mentioned today that it's because she thinks she's being watched in her bedroom. It's weird because she has a very small window in the corner of the house, which is oblique to the street, and any view is obscured be a large tree, and she keeps her blind down, but she doesn't understand that it makes it impossible for people to see her.