The Goose and Carrot Thread

[hibernatinghedgehog]

Everyone is welcome. The thread is deleted after 90 days.

I don’t think it would cost you £1000 a week though @Lougle. In reality ds could live as he does now with, for example, a resident housekeeper assuming dh or I were still able to muddle along or with a sibling or one of my siblings or wider family. (I’m assuming he makes some progress over the next few years which I genuinely think he will). It is very normal in my family for care to be “in house” and ds doesn’t at the moment need more support than the average young primary school child.

Care at home for @Lougle’s DD could easily cost £1k pw or more. DS1’s does.

ITA. DD1’s care at home was more than £1,000 per week for daytime only, in 2016/17 and that was on the basis, I was in the house too, plus we looked after her at night. If, she were looked after full time in supported living, I guess she’d need six staff for the daytime and at least three for the nighttime, to cover all the shifts. Probably the staff costs alone would be around £30,000 x 9 =£270,000 pa?

I appreciate that feelings run high on these matters. I already feel immensely guilty for considering residential provision for DD1. She doesn't need the care that a small child would need. I don't want her siblings to have to take responsibility for her care in the future. I hope they will grow to have a closer relationship if her needs are not impacting their well-being, and they can appreciate her as siblings, and that they will want to spend time with her. The professionals who deal with her think that this is the best thing for her. We've tried the other options. I even spent literally hundreds of hours shovelling tonnes of soil to give her a space that she used for 1½ hours. I've done my best and it isn't enough by a long shot.

@Lougle I know I have said this before, but I will say it again, you shouldn’t feel guilty. You have nothing to be guilty about. Being at home isn’t working for any of you. Not for DD1. Not for DD2&3. And not for you. It isn’t sustainable. Let’s be honest, if it was anywhere close to being suitable, social care wouldn’t be so ‘quick’ (by their standard) to agree funding and the LA wouldn’t be looking at residential colleges. You have given and done everything you can for all your DDs. No-one can ask for more.

I don’t expect DD2 to take on a caring role either.

I think all our adult children have very different levels of need and obviously there are those who will need care that exceeds £1000 a week by many many times. On top of that we each have our own resources (not just financial) that feed into that decision making process. The cost of care in a residential setting is very different than the cost of caring for the same person within the home. I think too there are cultural differences in our approach to care.

Which is all just a long winded way of saying I think one persons choices can be discussed without them being seen as a criticism of another’s? Obviously if I couldn’t make it work for ds at home we’d look at other options, but that’s not the situation we are in.

As far as siblings taking responsibility for ds in the future, it’s unlikely to be an issue for at least another 20 maybe 30 years and at that point they will I hope have their own careers, partners and families and ability to create the best life for everyone just as I try to do now.

I think its amazing all you do for your girls @Lougle and I hope DD1 will settle in to her new setting and your other DDs will find it easier.

I hope you can find a way to keep DS at home long term @SunriseSunsetz That's our plan for DS too in as much as we can plan but will see how things go. I am lucky though we just have one to go.

Spent 7 hours with DH and have sorted the dining room papers, cleaned the kitchen including another go at oven and dishwasher, cleaned the floors, and thrown out a lot of old papers and tiled most of DSs bathroom that is to be tiled.

We now have electrics quote in - have bill for to date which is as before so paid that though we are awaiting certificates. Then have a quote in which says for all sockets in the house (yikes) but presumably not lights (£4,000), and EICR "free" and the first stage of shed electrics for £500, all include vat. Will likely accept as not much choice. Presume that's about 4 full days, great.

Just had a Chinese takeaway.

Wow, that's turning out to be a pricey project!

The drain guy came today. He couldn't put in the ACO drain behind the house, so he's using a French drain. But then beside the outhouse he'll use an ACO. He has to come back tomorrow because the grinder he hired isn't good enough, so the hire company are going to swap it with a petrol grinder tomorrow. I suggested he could use a diamond cutting disc from our garage but he said it wasn't the done thing and he'll be able to hook the new grinder up to the hose to cut down dust.

So many different needs and in my case absolutely no idea what they will be but whatever they are DD will be doing it alone.

@SunriseSunsetz breaking it down to easier chucks might be the way forward. Health LPA for DS if at all possible (took 6 months in total to get this in place) if not Deputyship. This has given me the most peace of mind ahead of any financial planning.

@Lougle i feel optimistic about your DD1’s placement. What if this is the move that improves all of your lives gives DD1 consistency, routine, better health and improves relationships with siblings and parents. DD1 might very well enjoy the independence from the family home and feel special and adult. I know DD1 worries about her plan in life. DPs are funny at times, my DM asked if I had thought about parental controls on the Switch, DD is 20.

Thank you @RedMoniker. I think that DF being so anxious about it all makes it really hard for me to talk about it. There are things that might really help. It's in a town, just 300 metres from a pedestrianised shopping complex. So they can trundle down to Dunelm, Tesco, Hobbycraft, etc., without the rigmarole of a car journey. DD1 will have a ground floor flat, which means she doesn't have to climb the stairs. She'll have a separate lounge area, which means they can encourage her to have a day/night routine. Here she spends all day in bed because her room is tiny and she can't be bothered to sit in her chair when she has a bed right next to it, and she doesn't like being in our lounge. She'll be able to dip in to contact with other people because her flat connects to the main house. The staff there will be able to enjoy working with her because they get to go home at night and recharge their batteries. It's only a 10 minutes drive from DD2's college and a 15 minutes drive from DD3's school. So on a Monday, when I drop DD2 to college then have 1½ hours until pick up, I could nip across and see DD1 - take her into town for a hot chocolate. If she's not too busy to see me. It's close enough to keep her psychologist and hydrotherapy going. They have room for her car and they have an EV charger. She wouldn't have to go everywhere I go, which she hates. I think it could be good.

I think they must be planning to offer a place very soon because I've had an email to ask about regular appointments so they can make sure they have drivers scheduled for those days.

@hibernatinghedgehog I think you have an open policy on DS1's car. Can you remember how long it takes to get the policy switched to open?

I think it sounds made for her @Lougle . I love the thought of you cafe surfing together after school runs. It is really really hard to find the path that gets everyone what they need, and it sounds like this has a really good chance.

I took ds to the toy shop yesterday and (this is huge!) he told me after a bit of nostalgia window shopping down the toddler isles that, “these toys are too little for me”(!!!!!). This has literally never happened. He usually adores them. We bought Lego (obviously) and two sets of figures one from Disney and one sponge bob. He’s been happy as Larry ever since.

@Lougle - if you mean for a Motability car, it took me a phone call to Motability; then Direct Line, their insurers and it was changed immediately over the phone. They had to send me some papers for the care home (probably the certificate of insurance and some other papers). The care home wants a copy of the certificate of insurance every year.

That's so weird! I often think our children are twins. DD1 has had the same developmental leap in the last few weeks. She wandered around The Entertainer last week, saying "LOL dolls are just loads of plastic and you end up with 3 tiny things", and "mmm...but where would I put the stickers?", and "I don't think I'd really use it". Normally, she wants to take everything from the shelves.

Oh that's good. I wondered if we'd have to go through a whole process.

@Lougle yes I often think the same and to be honest it’s a comfort even when they are mirroring distress rather than development. It allows me to think about how much is who ds is and how much is nurture in a more sensible way as on a bad day I do question my choices for him.

Is it time we started talking about meet ups again?

@Lougle that sounds like a really good set up for DD1. I hope an offer is made quickly, so you aren’t left in limbo.

When we swapped mid lease, it took two phone calls. However, they have tightened the rules since then, so you may need to send proof of the residential placement.

I wouldn’t dream of asking DS or DD2 to do the day to day care for DD1, after we’ve gone. It’s too stressful for us for more than 10 - 14 days. If the NHS was seamless and we got proper respite from SS, we probably could cope; but no respite centre in the county can cope with DD1 and the NHS won’t change any time soon!

DS works a minimum of 70 hours a week; often more. He doesn’t have time; and he has DGD with ADHD and possibly autism, so he’s dealing with the SEN system. English is a second language for DDIL, and she doesn’t understand the jargon, the education system and SEN here.

DD2 can’t look after herself and couldn’t possibly look after DD1. DD1 wouldn’t reliably get her meds nor food, for a start. DD1 can’t get over her jealousy that DD2 has everything she wants; although DD2 is even less happy than DD1. Plus, DD2 may well have DGD2 with ADHD as well!

One of their cousins has a DD with autism; so other children in the family could well be affected, but are too young yet for it to be obvious.

All we ask is that DC supervise her care, buy her clothes, etc and see her sometimes. (Well, DD1 doesn’t want to see DD2, so that might just be DS)

I am exhausted. My fatigue seems to be getting worse. I can’t get on top of it.

@hibernatinghedgehog are you eating, exercising a sleeping enough each day? I find I have to be focused and make sure I’m doing those things now however inconvenient. If you are overweight, lose it, if under put it on. Bodies are just machines and if you want them to be optimised (especially after 50) you really do have to put the work in.

I say this as a chronically sleepless, overweight, joint achy, pudding of a woman. My problem has always been finding ways to do all that while also getting through the exhausting life we must lead. You can change. It’s bloody awful doing it but we all can.

It’s not surprising, with what you have to carry.

However, have you had any blood tests recently on say vitamin D, B12, iron…? It’s always best ime to rule out a physical cause, otherwise life is an even more uphill battle to nowhere!

@SunriseSunsetz I don’t get enough sleep. I don’t sleep well anyway, but a good night’s sleep is impossible with DS1&3. That isn’t going to change. I don’t exercise as much as I should. It’s not always possible to fit it in. There is always something that needs doing. I have a very long to-do list. And frankly, I don’t have the energy to exercise. I could quite easily spend all day in bed at the moment. I am overweight. I comfort eat. Other than that, my diet is pretty good. Lots of fruit and veg, protein, etc.

I know that sounds like I am dismissing these; I’m not. I know that in an ideal world, I would sleep more, exercise more and stop comfort eating. If only it was as easy as saying that. They are long standing though, and my exhaustion/fatigue has got much worse over the last year and seems to be getting worse.

@NightHeron I had bloods earlier in the year. No deficiencies, but some other bloods were abnormal. I saw rheumatology who said it was down to stress and not enough sleep.

I'm not surprised you are exhausted @hibernatinghedgehog with all you do for your family and the lack of breaks.

I do agree the ideal is lots of exercise, being the ideal weight and sleeping well and exercise is a strange one where you feel too tired to do it but after you do it you get more energy but its very hard to do these things with multiple children with high needs to care for. I find sleep very difficult since menopause and can't take hrt, the only thing I find helps is anti-histamines which I take one or two at night then I sleep. The cat doesn't help but he's adorable so forgiven. If its light related lots of lights everywhere can help. Its probably stress though.

Thought a bit more about extra electrics - we have to have a solution but its safe for now and certificates we just need for house sale and EICR by end of 2027 so I am checking thatch rules for electrics, listed buildings etc and trying to think it through. Have email in to listed buildings. Have also gone back to electricians with list of concerns to see if they can find solutions.

We can carry on with bathroom and get that finished except connecting the wire and also have to find flooring solution for DS. So more tiling today. Then it'll be taking down shed and new one arriving. We have plenty can continue with and also want to have a break soon and one for Christmas when DD returns. Just need to be mindful not to do things which may get damaged in rewiring. I am asking them what that will be. Apparently shed involves a trench through the garden and extra tbc costs after the first stage. So checking if that would be through our new turf. They can probably do it not but need to get them to think about that. They warned DH may take out kitchen tiles. I think delaying this a couple of months could help with getting any listed buildings consent, thinking it through and financing it - well doesn't help but more time to get used to it. 😂

The council have also trebled the price of special collections of general stuff though luckily we have cleared out pretty much everything from the house before other than DDs room but even she did one lot last time was here so its not too bad now. My weight is fine and exercise levels are great with gardening and DIY but my eating is very much going into just grab this mode - like lunch was a croissant with cheese and smoked salmon then chocolate buttons. The farm has been hit really hard by the heatwave and not doing their veg and fruit boxes this year. Though we do have enough fruit and veg.

Honestly @hibernatinghedgehog you could be describing me in the run up to my stroke. I’d rather none of you followed me down that particular path because I was extremely lucky. For me obviously it was rather more pressing and the hospital were very blunt. I don’t respond well to people telling me to do anything but I went away and decided I could and should lose a considerable amount of weight and exercise. My husband, children, parents and siblings need me. Not just because they love me but I am the prop that allows them to live independently. I have been working very hard to make myself redundant should the worst happen and to maximise my own health. It’s hard, very hard, and sometimes a bit much, BUT I feel much better physically. My joints hurt less, I sleep better, and all players are more able to support themselves and each other. It will take at least another year to get to a place where I think they are safer but I just get up each morning and try to keep going.

Much printing, drying, snipping and general industry is happening here today. I haven’t seen him busy for years. I’ve contacted the consultant through the epilepsy nurse, but I’m not sure what’s next.

I just realised I didn't respond to your last sentence.... Yes!