The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

Sorry not been awol just had busy couple of weeks but reading along.

Hope DS is more comfortable @inthequietofdawn and you got some sleep at home with other DS.

wow @TheGoodCat getting jabs done & uni work are amazing achievements your dd has come such a long way over the last year.

sorry to hear that DS got upset over the shed @Tulipandmagnolia its such a big part of his life at the moment his “safe” space it does sound like pivoting to repair maybe an option or at least leaving in situ until the other one is ready. Good that he could communicate his feelings though.

Im on the train so apologies from missing people I can’t scroll back too far. DD2 has just had her ears pierced! Early birthday present as she really wanted it done & we knew an amazing quiet place to have it done but had to travel to get there. All the people though shopping has exhausted as both we did escape into McD upstairs for AC & peace before catching the train home. I virtually never go shopping in person now I just can’t handle all the hubbub and I’m making use of my new loop ear buds .

You're being really brave to even consider attempting it - that shows how far you have come. If travelling in separate cars would make you feel more comfortable, do it. However, I always find statistics reassuring in these situations. I've just done a quick google and RTAs accounted for only 7% of accidental deaths in the UK in 2022, so it's not terribly likely.

I'm just starting a 'Life Book'. I got the idea from Age UK, but I don't like their format so I'm making my own. I've given it the subtitle "Everything you need to know if Lougle can't do stuff for you." I figured it would cover death and illness/incapacity.

@Lougle thanks for the reassuring stats, facts help. Naturally your life book would be a trilogy! Just writing down 24 hours worth of doing is making me proud and sad for myself.

@Beachgosling lovely gift for DD2. Loops are amazing.

@Tulipandmagnolia - Is there a place, where DS likes to stay? Could you and DH take him there for a few days, while the old shed is taken down and the new one erected?

DD1 likes routine, but she loves going anywhere, so long as she can stay in a hotel with all you can eat breakfasts! She loves the new house extension, whereas DD2 complains about the change. DD2 has more autistic traits than DD1, even though as the epilepsy progresses, DD1 has got more autistic!

I am working today, as DS asked me to have DGC yesterday at the last minute - when I planned to work.

Thanks @Beachgosling Hope DD2 has a lovely birthday.

Sadly @LathkillDale DS won't leave the house and garden since hospital in 22/23. Pre hospital that would have worked well as he loves hotels / trips out. He is at least in the house, and garden generally at the moment so he must feel the shed is saved for now. I think they would take it down quickly, maybe an hour or so though its better for us to keep it until new one anyway as planning can be slow and involve going back and forth with it being listed and conservation area and then there's a 3 month wait for them to make it. I did get the sense yesterday DS is starting to think about doing something, might be wishful thinking though, it was the first time he's acknowledged there is a problem but may still be a long time yet and not speaking at all or writing other than codes for computing.

@drspouse I hope DD has a good time.

@Wellzizizbetter I’m sorry this year has been a difficult year and you won’t be able to attend the funeral.

@TheGoodCat you are bound to be anxious. Enjoy your night away.

@Beachgosling Happy Birthday to DD.

@Lougle along with information about wills, LPAs, insurances, utilities, etc. we have an emergency folder with instructions on how to care for DSs and where to find things. It has never been used, but if it is ever needed, the hope is someone can make a good stab at caring for them with everyone remaining in one piece.

DS1 is doing much better today.

@inthequietofdawn that is good news!

@Wellzizizbetter you've had more than your fair share of funerals, haven't you? I'm sorry you can't attend. Well done for sorting the drainage issues though - running water is always reassuring.

@inthequietofdawn an emergency folder sounds great.

I'm feeling discombobulated, tbh. I feel a great sense of urgency to pin everything down for DD1, yet there is little to stick a pin in. It's all unknown and nebulous. It feels like everything is happening so quickly yet so slowly. She keeps asking if there's any updates - she doesn't really understand that nothing happens at the weekend.

Yesterday, for the first time since she was ill, DD3 went out for a walk in the village on her own. She's gone out today with a litter picker. I'm excited but also holding my breath.

@inthequietofdawn DS1 is doing much better today.. This is the best news.

@inthequietofdawn onwards and upwards. Is any rest in sight for you?

@inthequietofdawn - it’s good to hear DS is getting better!

Good to hear DS1 is getting better @inthequietofdawn

It's hard when you and they want a path but there isn't one @Lougle but great DD3 is out for a walk.

Enjoy night away @TheGoodCat

DS loved my Waitrose order and ate giant chicken Kiev, cinnamon buns, melt in middle chocolate pudding and fruit from it yesterday. Today we are off to Sandringham flower show and I am sure some of the 4 tubs of posh ice cream will disappear along with some floral bath foam and lots of conditioner.

DD away for her first night at camp, house is a tip, I'm exhausted.
DH went to IKEA yesterday after dropping her so we have lots of new stuff. My fault, I told him to get it - but some of it is for organising the tip.

@drspouse sorry you are exhausted.

@Lougle it is brilliant DD3 felt able to go out alone around the village.

Thanks all. @Lougle I have another busy week ahead but DH is staying with DS1 tonight so I can get more sleep which I am grateful for because it is supposed to be my night.

Hope you can get some rest @drspouse and @inthequietofdawn

We are just back from Sandringham Flower Show, had Sunday lunch there, had a cake in aid of the church, went to flower show and church. DS had as expected raided the ice cream and as we were sitting upstairs afterwards at home he came right by us to get another ice cream. We had a chat about sheds on the way, DH thinks current one is like weatherboard individual mini boards and that's certainly what the ones that have fallen out are like, about 30cms by 10-15cms and about 10mm or 12mm thick. I think first stage is to wait for the tree and see if that can be taken down with old shed in place. That's in 1.5 weeks time and DD also comes back then so can ask her as well. Will also look at current shed in more details.

DH is making tea which was my turn, so I'm having a lie down with a book.
My DB keeps sending me info about my mum's cancer. I really wish he wouldn't but I can see it's his way of coping.
I started a thread in Parenting but wish I hadn't because apparently I know nothing about parenting kids with ADHD plus I should never have been allowed to adopt.
DS lit a candle for my mum this morning at church. He was quite manic yesterday when DD left but we had a relaxing day and he actually helped me carry bags to and from town and quietly sat through Pompeii which I thought he'd like (really it's a bit too wordy for him - too much Latin and not enough volcano erupting!)

@drspouse it's so hard when different family members cope in different ways. Is your brother trying to 'help you be realistic' or is he in some way hoping the cancer can be fixed if you know enough about it? It sounds like nature is going to take its course and it's just a matter of timing? The waiting and watching can be really hard though, especially if there's no clear timescale.

@Tulipandmagnolia you can reinforce a shed by putting 'sister studs' in next to the existing frame studs. That would mean that you only need the roof to be replaced and any boards - the boards are available from most DIY merchants. Tbh, from your photo the shed doesn't look in bad condition.

DD1 has been in pain this evening. It's so hard to gauge the level of pain because she always describes it as 'worse than any other pain she's had' and 'completely different to any other pain'. Then she starts talking about feeling like she's been shot and thrown into lava....not easily placed on a pain rating scale!

@Lougle I like DD1’s description. Although I’m sorry she is in pain.

We keep track of things like sleep, mood/anxiety, dystonia, pain, toileting, cough, liquid/food intake, etc. It helps us to spot issues earlier, spot patterns, and it helps us to decide what is something that needs acting on and what isn’t so serious even if DS1 is acting like it is the end of the world. We also use the paediatric pain profile. I know DD1 is an adult now and it would add to your workload, but do you think something like that would help?

I think it would be helpful to track sleep, mood/anxiety, etc., more formally. However, toileting is difficult because DD1 toilets independently and she will sometimes tell me she has 'diarrhoea' but actually, if I check in time, it's just a soft stool. She has no reliable concept of time - she's a bit of an enigma in that if you say 'It's on the 31st' she'll sometimes say 'Oh, so next Thursday?' (and she's right), but she will say that she hasn't had a poo for 'months and days and weeks' because she's anxious, and I have to remind her that earlier that day she told me she had just done a poo. Similarly sleep - she sleeps alone and will often say she was awake for 'hours' in the night - we have no idea if she was actually briefly awake for the toilet, or whether she did toss and turn for hours.

Pain..the trouble is that her anxiety influences her perception. Looking at the PPP, she would score really highly - she grimaces, she tosses and turns, she stiffens and jerks, swears and cries, rubs the area that hurts, is hard to console or comfort....she says she feels sick and her tummy hurts, but then she'll suddenly ask what's for dinner and tell us she's starving, then returns to her previous state.

So, I guess I'm saying that I don't know that 'objective observation' is going to be easy. I've seen critically ill people in ICU with septic bowel perforations behave less distressed than DD1 does.

I don't doubt that the pain is genuine, btw - I don't think she could make up the spasm and gasp, etc. I just don't think it is easy to correlate her symptom severity with clinical severity.

It is one of the things that worries me about resi care - I suspect she could visit A&E a fair few times before they can judge whether she needs to be there.

I'm a dreadful wuss with pain - you'd think I was dying sometimes by the way I'm screaming - but sometimes I make up my mind to grin and bear it when I shouldn't.
So I've broken 3 bones and each time was worse than the time before (probably because I was 15 years older than the time before!) and I also remember making a lot more noise but even more than the increase in pain IYSWIM.
But I had a very painful smear, not as painful as a broken limb, but I felt because it was a "normal thing" I shouldn't be crying out but the nurse said "I can stop, there are alternatives" and because she said this a few times I felt able to admit it was painful.

@Lougle If she can’t report pain levels and you can’t assess them from observation, then they aren’t a useful measure and imo could be ignored or routinely dealt with rather than focused on. What COULD she report on and what COULD you observe that would help support her health and wellbeing?

I’m completely the opposite about pain. I genuinely don’t feel it till it’s very painful. I have to remind myself to over report, so ds’s inability to report and lack of awareness is my normal. I notice my patience fails, food elevates my mood more, I get tired more quickly, and a general sadness before I clock my kidneys are in trouble or my joints about to stiffen up.

@drspouse nobody really can ever understand your family dynamic, and you are losing your mother so not in normal times. My own belief is that children should outgrow their parents/support and truly excellent parenting boils down to allowing yourself to be made redundant and unnecessary. The love and friendship remain but they stand independently leaving you adrift. Truly gifted parents achieve that without their child ever feeling it in anyway. Walk next to them while they need you.

We had a long weekend and an even longer night. I am already on my third coffee.

I’d say statistically DD1 has at least one drop attack a week. Sometimes, the fall is just a shock, mostly she is screaming her head off, when she comes round, and she has a high tolerance to pain. She can say her back hurts, but it could be anywhere from her neck to her coccyx! She can’t describe or localise pain. She can use a visual pain assessment chart. The care staff call a nurse to check her over, if she is in pain. Often, they will check on her over the next few days. IIRC, she’s been to A & E about three times since 2017 - when they aren’t sure if it’s a fracture usually.

However, I expect the nurses are particularly experienced in injuries from falls. That is one of the main reasons she is there. I suspect in supported living or an ordinary care home, they’d take her to A & E every time she hit her head (and she wears head protection).

My consultant neurologist says, when he does my Botox injections, that most patients experience pain, when he flushes; I experience it, as the needle goes in - but I make less fuss than most of his patients!

I think changes in routine, possibly. For example, she has been up in the night a lot in recent weeks because her mental health was bad. That stopped after her quetiapine increased. When her mental health is bad, we tend to see a lower reporting of physical symptoms.

Yesterday, for the first time in a few weeks, she was complaining of back and hip pain. She said it was very bad. Last night, she came to us in the early hours for pain relief. This morning she asked to make slime, but then changed her mind because it would involve bending over the bowl to mix the ingredients and her back hurt too much. When she talks about that, she's very matter of fact, so it feels more objective.

@LathkillDale it must be hard to have such limited control over the epilepsy for so long.