Hullo, sorry for vanishing again, I just needed a break. Missed many of you though <3

Thanks for still following, and caring, @Alice B and @WhistlingBadger !

mum and I both talked with the district nurse team and occupational therapist about where she'd want the bed, and which floor she'd rather be on if/when she reaches the point she can't do stairs. Practically wise, the upstairs makes much more sense. These UK ex-council houses aren't large like in the US. Lots of small, pokey, awkwardly shaped rooms, and both upstairs and downstairs have their advantages and disadvantages, But on balance, we've all agreed that upstairs is better for mum, and even more so after the fall.

Downstairs is front door, stairs upstairs directly opposite. To the right of front door downstairs is the smaller living room/den area, which became a storage area/the room I stayed when I visited, so just has a broken down single bed in it, is awkwardly shaped and much much smaller than master bedroom, currently has huge cabinet I was using as a fish tank stand, my wardrobe, chest of drawers (with 15.5g pygmy cory tank on it), a bookcase, two small chests holding paperwork and bedding respectively, and second also doing duty as a bedside table, and that feels crowded, plus contains everything I own now.

To the left of the front door is the living room, long and narrow, leading onto kitchen and back door. Mum would sit in the living room during the day and blare the TV while she did puzzles, and it also houses the two parrots, and dad's 57g fish tank that I inherited, and dad regarded the kitchen as his territory. Kitchen has back door with steps to back garden, mum rarely used kitchen at all, dad, brother or I always fetched her meals and coffees for her, and even more so now as she's lost mobility and stopped even pottering around to water her plants.

No toilet or bathroom downstairs.

Her (and dad's) master bedroom is the one they've shared in this house for 34 years; all her things are there and still mostly set up the way she had them, and at least until yesterday, she could still access the bathroom with my help and the right equipment to have a shower/use the toilet, and brush her teeth. The Master bedroom is easily the largest room in the house - even with the queen sized bed, there was still room for the three wardrobes they have (mum's, dad's, and a third old one mum always used to store towels/bathmats and other cleaning/fabric essentials), and room for a separate sitting area, with a suitable armchair, folding table, room to set up her large TV/porta puzzle thing, and for two or more staff to be in there with her to care for her, and with moving and handling risk.


Since she didn't access the kitchen herself anyway and had all food and drinks bought to her, bringing them upstairs to her makes more sense than getting all my stuff out of the downstairs room, and making her move down there when the room is much more prone to cold and damp, and we'd have to start over, it's never been a proper bedroom set up as was always meant to be temporary and/or used as storage, so it was never one she used regularly anyway, and ideally, she wants to pass peacefully at home with the right care and support, not have to go into hospice, and her own room but comfy and safe in a hospital bed, with a commode and sitting area for while she's able and wants to get up, makes the most sense to all of us so far, and at least the bathroom is still accessible near her room, and my brother is in the second upstairs bedroom, so we both have alert plug ins for her call system, and he's been leaving his door ajar at nights too now, in case she needs him, so he can hear better. He knows he can use the call button or fetch me if she needs more care.

Once she's bedridden, at least it'll be in a more cosy and familiar room, with enough room for staff to work either side of the bed to help keep her clean and turned etc.

Even getting furniture into and out of the downstairs room I'm in is difficult, due the door being right next to front door, opposite living room door, and last step of the staircase sticks out a bit into the tiny "hallway", so it's always been difficult to get furniture in and out of the house, but especially that room, or into the living room. at least straight through front door, straight upstairs, and a slightly larger upstairs hallway to manipulate the furniture around before taking it into master bedroom is easier too.
 
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I did try to wind down and relax enough to sleep, called a friend for a quick debrief once mum was safely settled in bed, reassured that at least even if sore and no longer safe to do stairs, bro and I had already shifted things and made space in her bedroom over the last couple of days, and did some final moving things they'd stored this evening and ran the hoover round before mum's fall. Told myself that while yes, it could have been much worse, she was at least relatively okay, comfy in the middle of her bed, hospital bed arriving tomorrow, plus mum's GP visiting, and the company that was lined up to help provide some personal care is also due tomorrow.

But worries and feeling all the emotions still kept me awake til 1am, even just trying to read my book in lamplight, I wasn't taking in a word, and tired, but wasn't drifting off until after 1am.

Woke at 3:30am in a cold sweat panic, head in agony, throat parched, wondering why I jerked awake, whether mum needed me, but listened and heard nothing, and the intense head pain eased once I sat up and drank a ton of water. Think it was anxiety dream/background mental panic, plus probably dehydrated myself today, along with having no appetite so didn't eat much, and anticipating worries about where/how to help and put mum while this hospital bed is delivered, when/where to put her dismantled queen sized bed and mattress once it does get her.

We don't have even a rough time slot for the bed arriving, not sure when GP is arriving, diabetes nurse estimated it would probably be after her morning surgery, so 11-12 ish. Carer company assessors due around 2:30pm. Understandable that they can't give us a timeslot for GP to a house call (they generally only do those in exceptional circumstances, of course), or even the bed delivery, since they deliver all sorts of equipment to different places, can't tell how long it'll take to get it delivered, set up, and instructions given at each address. But I had hoped to be able to get mum up and settled downstairs reasonably early, so we could move the mattress, empty in built bed drawers, and move the bed base sections somewhere else and run the hoover around that side before hospital bed arrived.

But I'm not dragging mum out of bed earlier than necessary. Last night ambulance crew after examining her kindly waited to see how mum managed and help me to get her stood, washed, dried and re-padded, into clean underwear and PJs, then safely onto and into the bed. She still found it difficult to stand up, then almost immediately said she needed to sit again while I gave the fastest wash, dry, and got another pad on her with their help. Then she needed to sit again for a minute before standing again to pull up underwear and lower PJs, and walk over to the bed using a cane, and holding onto one of us for balance and support.
I'd insisted mum didn't try to use the commode without me, and she did call me about 10:30pm, thankfully, so I was able to get her to wriggle closer to edge of bed, swing her legs out, and I moved the commode so she only had to stand, turn and sit to use it, then reverse it to get back into bed. But I'm still paranoid and nervous about her moving ability now, and how her legs are getting weaker. Want to let her be comfy in bed, then comfy and clean in the armchair upstairs when she's ready to get up, or the bed gets here, or GP gets here, whichever comes first. Her comfort and safety has to come first over annoying the mobility furniture company.

Nearly 5am now, so doubt I'll be able to get much if any sleep tonight now. Dog will wake me between 6-7am anyway. But I'll try to chill and read my book, while drinking more water!
 
I barely slept last night - couldn't mentally switch off no matter what I tried, even diazepam didn't work, and even though I'm flat out exhausted and run into the ground.

Fell asleep sometime after 1am, woke in a cold sweat, head pounding and dehydrated, as mentioned above. Was awake for hours then, at 5am let the dog out, then cat starting yowling in the hallway at 6am, so fed both dog and cat at 6am (usually 7), after checking on mum and finding her fast asleep and looking comfy in the middle of the bed, tried to get my head down for a couple more hours before today's whirlwind began.


Did fall asleep, but woke up at 8 from horribly vivid nightmares where I'd lost animals and they'd been hurt, because I'd failed to even realise I'd lost the dogs on a walk, was too zombified in my dream on meds/off my rocker to know what had happened, but both mum and dad made an appearance, animals were hurt, and it was all my fault. Doesn't take Fraud *cough* Freud to figure out why my dreams were filled with terror, humans and animals at risk and in pain and it being my fault for not catching it in time/preventing it etc. So felt disoriented and awful when I did wake. Checked on mum, she said she didn't need the loo, was comfy and just sleepy, and I don't feel safe asking her to stand and move either until someone more medically trained and mentally together could assess her properly to be moving to chair/commode etc, and to get her bed out so hospital bed could come in. I insisted she use her call button alert if she needed anything, not to try to move herself without me there, and she said she would.

Wasn't sure who to call first, talked with bro for a few mins while I made coffee and we discussed where/how to move mum to while we got her bed out, but bed company showed up close to 9:30am, of course, while mum was still in bed, unwashed, and we explained to the delivery guy about mum's fall last night, that she does need the hospital bed asap, but since her fall was late last night and she was still sore and exhausted, and not sure how much or far she'd be able to stand and walk yet without other professional there - I know she's now a high risk for manual handling/safety for falls - and I'm so mentally, physically and emotionally drained and confused that I don't trust my own judgement, wanted professionals to assess and help me move her safely before she could transfer to a chair, for us to move her bed, to get the hospital bed in. The guy said it was fine, they could bring it back later, or tomorrow, to just call whoever I needed to, and that they, the district nurses/occupational therapists, could rebook the bed to come back when we're ready for it.

I called the district nurse team main point of contact, which deals with the district nurses, and the occupational therapy team, tried my best to explain what happened, and my concerns about her moving, and how I was hanging off the end of my rope and couldn't even think straight anymore, but needed more help, asap. As I said that, mum did press the buzzer, and she'd fallen out of bed. Another fall, exactly what I was worried about, only half an hour after I'd checked she was fine and she promised she'd call before trying to move, but she said she was reaching for a drink or something.

I just broke down on the phone, said we need help from people who know what they're doing, she isn't safe, I can't do this alone anymore, I'm physically, emotionally and mentally worn down, wiped out and needed medically and manual handling trained personnel to help. My bro isn't trained at all, he kept coming up with stupid ideas to get her up or lying down that would have just made it harder. I got her as comfortable as possible with blankets and pillows - at least this time she kind of slid off the bed, so she wound up back to the bed, legs in front of her stretched out - as comfortable and easy for getting her up as possible under the circumstances.

Had to boss bro around again, prop mum up and encourage her that help was on the way, in the meantime, moved her bedside cabinet, plastic storage cabinet, all the bits and bobs on top of those things and undeneath/around, tucked down besides, and all the random shoes etc moved out of the way, put away into a cupboard as much as I could, and it cleared some space either side of mum for more pillow propping, and so the OT therapists who arrived eventually could use their equipment to examine her (mentioned her blood pressure was low, which triggered a panic attack and flashback for me, from when dad had his aortic aneurism and the low blood pressure is what alerted them, so I had to leave the room and make my bro go back with them, because I fell to bits wondering if she'd need to go into hospital, if we'd lose her today, like we lost dad after what seemed like a minor fall.
 
After a had a panic attack/mini breakdown when the OT therapists (they sent two OT's with equipment to get her up from the floor safely, and into a chair, and to order the hospital bed to be redelivered ASAP) mentioned her blood pressure was low, when it was fine last night, and when dad passed in February it was his low blood pressure and shallow breathing that made them take him to hospital, and it was because of internal bleeding from the aorta. Since mum is also on blood thinners, bleeding of any kind is high risk for her, and couldn't be sure she didn't have internal damage at first, so I went into flashbacks of losing dad, and just broke down - came downstairs and made my brother go be with her and the OT's so I could sob downstairs, take a diazepam and try to pull myself together.

I held it together just enough to phone and beg the right people for help, while being honest that I'd hit a wall physically, mentally and emotionally, was terrified for mum, that I'd miss something crucial, or make a mistake with her meds or something, because of lack of sleep and the extra stress and worry from her falls sending me over the edge. While my brother does help, and does a lot, he isn't trained for this sort of thing, and she really needs nursing home level care now, with two carers for any transfers, ongoing OT assessments, and more nurse visits and docs assessing her meds and making clear, accessible documents (I ordered a dosette box online, so carers/bro will be able to give evening and bedtime meds once I've set it up with the right meds), a lockbox of some kind for the strong injectible stuff that only the nurses can give, because I don't have one, and with carers and different nurses coming in and out to help care for her, it needs to readily available and accessible for nurses and I, but not randoms who might steal morphine for a high. I never like to assume that of fellow carers, but it happens, and mum needs it available at this point.

The company that has been arranged to provide the carers and help sent their assessor yesterday as well. Not great timing, given the bed was delivered at the same time, I tried to let my brother handle it, and I was still in the middle of an emotional break, but I held it together just enough for him to see we desperately needed more trained help as I was run ragged and mum's condition had rapidly worstened so much, but also to apologise for being frantic/crazed looking, that I'd reached the end of my rope and needed outside help who are trained in caring for medically fragile people, moving and handling and safety risks etc, because I've been doing all the physical and medical care for mum, plus trying to get the house arranged and sorted, with brothers help, let alone finances and paperwork, and he was pretty good, seemed to understand, and within half an hour of leaving, he called to say he'd got an emergency carer to come in for half an hour that night, so she and my brother could help get mum settled after I'd given meds, let me relax for the evening and get some rest, and hopefully sleep.

So I did. Half an hr before she was due, mum was still sat up in her chair so I bought her some coffee and juice, gave her the pre-dinner evening meds while Sam fetched her some dinner (microwave ready meal, but under the circumstances, all have said that's fine!), and I started to get her bed made up for her, then left that with the carer and brother, said that mum can tell them which layers of sheets and blankets she wants. (I'm gonna try to talk her into trying a duvet, instead of the piles of blanket bedding dad preferred and they've always had, but no longer fit a single hospital bed, and are difficult to manage and keep her properly warm and tucked in).

I woke at 4:30am, didn't hear or see anything from upstairs so assumed Pixie woke me, went and let her pee and made coffee, then went up to check on mum, and she said she didn't wake me, did she? She'd used the commode by herself because she didn't want to wake me, bless her. I had to again insist that she ring the bell, that I was awake anyway, and I'd much rather be woken so I can help her use the commode and get comfy in bed again, rather than find her on the floor with her call bell out of reach!

Gonna try to grab a quick shower now, another carer due to come this morning around 9:30, 10am.
 
mum is now bedbound for at least a few days - fortunately we have the hospital bed now, and I'm very used to nursing home level caring, so can wash and change her by myself, know how to do it safely and gently, and can now lift the head of the bed up so she can eat and drink with help. Still waiting on a bedpan, hospital bed sliding table, and now a hoist machine to help her hopefully be able to transfer to commode and chair again at least, but every hour she's boundbed, she will be losing more mobility.

the carer we've been given for 45 mins in the am, and 30 minutes at 6pm, is useless. lazy, unhelpful, not a good carer, and I don't trust her. Only changed mum's pad the first visit when I left her and Sam to it. Meant I got a couple of hours to try to organise other things though.

Main thing is mum is as safe as I can make her, I'm used to this kind of work, shift work, and being able to wake up or stay up all night when needed, I can and I will push through this. I'm on top of her meds, and district nurses/St Peters hospice are sourcing more outside trained carers and time given to us, so I can get some proper sleep, and the odd hour away from the house.

It's just gone 2am now, but between phone calls, helping mum with personal care, spending time making sure she's comfy, instructing Sam (brother) on what to do, and I've written instructions for caregiver and Sam to maximise the 45 mins she'll be here for tomorrow morning, so I can hit pets at home, and tescos, and do christmas shopping on mum's behalf, gifts from her to me and him, from me to him, for the pets - and while I've already got the main gift for her, buy some stocking filler odds and ends, comfort items for nail care, skincare, to sit with her and pamper her while chatting/watching a Christmas movie or a classic, etc, and simple things I can throw together to make a quick and reduced stress cheat day roast dinner for Christmas day.

I already feel better, now that I've made that plan. If another crisis hits and it can't happen, then I'll come up with a new plan for Sunday, or we'll hold our Christmas day proper celebration on another day when we can.

Love you guys for being a support and letting me process and vent here, and for the pms from people who empathise with this grief and pain, and shared your own stories with me. All of you who've responded here or have sent pms, this is something I can do to help me get through this, and I can't thank you all enough.

Happy holiday season, to everyone, thank you.
 
Fingers crossed for you that everything does go to plan and you get your Christmas Day 🤞

Yes some carers are useless, others are great. If it's the same as when my mother had carers coming, she'll have different carers every day and the good ones balance out the useless ones.
 
well, I was meant to be getting a break tonight. St Peters Hospice called earlier and said would I like a nightshift worker tonight, so I could sleep. I nearly cried with relief and called them angels.

Instead, the st peters woman showed up five minutes early, had sounded nice on the phone, but seemed cold and as if I was overdramatising mum's conditions because the district nurses who visited today said that mum was swallowing and eating and drinking pretty well.

I guess the doctor and nurses who also mentioned the lack of appetite, struggle to eat food, and bringing up phlegm and coughing as she eats and drinks, something even my brother noticed, and this 'nausea' only happened immediately after eating and drinking - plus her choking while trying to drink water and swallow a tablet this morning, and having to stop her from gulping huge mouthfuls of water without pausing to breathe or swallow it down - making her high risk for aspirational pneumonia - is only my imagination as a crazy, hysterical daughter, and not the same symptoms I've witnessed in many deaths in nursing homes as patients begin to fade, or her now bedbound status - when it's well known that once mobility is lost, the decline becomes even more rapid as they get weaker and weaker.

So instead of the relief I felt that a professional would be able to care for mum overnight, and let me sleep, knowing she'd be in good hands, I've now broken down crying in front of my uncle, who showed up unannounced at 8pm, and left just now at 10pm - had a fight with my brother, and and am now quietly sobbing to myself about how on earth I'm going to manage this and get through to care for mum, let alone actually try to celebrate Christmas. Which I'll also have to be the cook for, BTW.

There's nothing to look forward to. Nothing but misery from here on.
 
then I'll have to pack up, clean, rehome most of the pets, sort through my parents belongings and mementos, try to find some way to skip the junk and if I can even find a way to store the things that have meaning to me, do all that alone once I've arranged mum's funeral.

My brother thinks we could live off their savings, my ESA benefits that they give me for being a mental person unfit to work, and the jobseekers allowance he gets. He's delusional. They had less then £18,000 in savings, ten of that will pay for the most barebones cremations for them both, whatever remains will need to go to the massively increased energy bills for everyone, and we're using the heating only in mum's room and the living room, no other rooms. Right now I'm huddled under a duvet with hot water bottles, Pixie swaddled in a blanket, because this room is cold and damp, the one above riddled with mould. Because of mum's health and time of year, the washer and dryer are always on, the dryer is very expensive to run, let alone us relying on ready meals and whatever mum is willing to eat, since I have no time, energy or inclination to cook in my dad's run down kitchen.

If, IF, we're able to pull together, perhaps we could buy some time at least. But this is forcing us apart again, not bringing us together, and he's talking about going to the other side of the country to live in a 'complicated' poly relationship with online friends he's never met. He left dad's funeral planning all to me, didn't help sort the bills into some kind of filing system like I asked, and the house will have to be sold off at a low cost to a flipper, since we could never afford to fix it up ourselves, and he's never redecorated or done real DIY in his life.

He'll leave it to me. I don't think I'll have ay resilience left by that point anyhow. Not alone, isolated, useless and grieving for all of the wasted time and chances, and people I loved, most of them now gone, him already planning his escape. Not that I want to keep him tied to the house, or to live with him, for that matter. But sorting any of it out is clearly being left to me, again.

I don't have what it takes. I've failed again, and again, and again, and I'm failing again now, when I'm most needed to be stronger than this.

Any hopes of trying to have as nice a mini christmas as possible have vanished. I had to keep scaling down the plans, but even the "be together, share, swap gifts and make cheat sunday roast using pre-cooked and frozen stuff, instead of the proper roast from scratch that I could make, if I had the time and energy - even that isn't going to happen.

I bought thoughtful gifts for my brother today, in the hour I snatched to go to pets at home and tesco superstore, now I regret it.

I'll just try to take care of mum and the animals til the end, but I can't fight for myself anymore, and I can't get enough rest to remain sane, let alone competent or functional.
 
I wish I had inspiration. I am settling my affairs this year, selling my now over-priced (once modest) home to get enough to buy something in another part of the US where the real estate market isn't inflated. I'm guessing life insurance isn't going to assist with your mom's final expenses. Just try to take care of yourself, you come in somewhere between mum and the dog at very least. Hugs
 
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