Latest - On Monday mum didn't feel strong enough to come downstairs at all, and it was obviously hard for her (and for me) to get her washed, dried and put into fresh PJ's and pad, before sitting her in a chair in her bedroom with a tray table to try to eat something. She's still saying she's not in pain, just so tired, and wants to sleep all the time, and has no appetite. She tried to force herself to eat, because she knows with her diabetes, she needs to, or her blood sugar levels will drop too low and send her into a hypo, and if I can't get her to eat enough to keep her from going into hypos, she'd have to go into hospital. I asked if she felt sick, she said the thought of food makes her feel sick, but she ate a little soup and bread, I made her eat some jelly babies in the am just to get her sugars up enough for me to be able to get her sat up in the chair so she could eat half a jam sandwich to stablise them a bit.
She didn't actually go hypo, but only because my brother checked in on her at 1am and 3am Sat/Sun night, and had to sit with her for an hour while she slowly ate that, but her sugar levels were low enough, and she'd eaten so little, that I didn't feel safe at all to give her her insulin, since that lowers sugar levels (she's still on slow release insulin that works throughout 24 hours). I tried tempting her appetite by offering to make all her favourites, but she said she just wanted soup, something easy to eat, and she ate maybe 1/3rd of that, with some bite sized chunks of bread in it.
The occupational therapist (OT - they assess moving and handling risk factors, mobility, equipment that's needed) visited Monday mid-morning, agreed mum needs a hospital bed now, it's being delivered Thursday to give me a couple of days to shuffle around mum's things and make room - it's come down if she's too weak to do the stairs anymore - which floor does she want to be on/is best set up for us and others to come in and care for her? Her bedroom seems the best option. Largest, so more space for her and a carer (whether me, or when we have outside help coming in) to help her bathe, room for a chair and TV set up, plus her bed and commode, familiar room with her things already in there.
I have to sort through and pack up some of dad's things to make space on his side before Thursday... not looking forward to that, will upset both mum and I, but has to be done.
While the OT was here and I was still talking with her about other aides, and the fact that mum is high risk for choking when eating in bed, high risk for pressure sores, and a risk factor for thrombosis and is also on blood thinners, that I was struggling to get her to propped up in bed, she's been using my arm to pull herself up while I slid a wedge prop and pillows behind her, but this obviously isn't great for my back, and she just slides down anyway, so she does need a hospital bed at this point, and it'll reduce the risks for pressure sores and thrombosis. While I was still with the OT, mum's diabetes nurse phoned - usually I deal with her, my bro told her I was with the OT and told her briefly about mum's rough day Sunday, not having eaten much, and hadn't yet gotten up to eat a proper meal that Monday morning either. Diabetes nurse said to reduce her insulin from 80ml to 70ml, and she'd come see mum on Wednesday as planned.
Once OT had left, I managed to talk mum into at least letting me give her a bedside wash, dry, clean pad and PJ's again, said she could always come downstairs for a while in PJs if she wants, then go back to bed whenever she wants, but by the time she was washed, dried and in clean PJs, she just wanted to lie down again. Let her have a little rest, then talked her into sitting in the chair at the folding table because she needed her meds, insulin and some proper food. She is still at least drinking water, and gulped her coffee down (which has always been decaf, and so incredibly weak, just a few granules of instant decaff and hot water, that it counts as basically water anyway), but said she felt nausea at the thought of food, and only ate a few bites again. I didn't feel safe giving her insulin at that point, her sugars were too close to hypo anyway, so supervised her other meds, tried to encourage her to try to eat a little more so she wouldn't go hypo, the got her settled in bed again.
Then I called the district nurse team to ask about getting an anti-nausea med, and that while her diabetes nurse had said to give her 70ml insulin, I hadn't given it, and didn't feel safe to give it to her when she was having such a hard time eating anything at all. District nurses are due to visit Wednesday, as well as the diabetes nurse. District nurse on phone completely understood, agreed based on her numbers it was the right call not to give her insulin that day, but said the anti-nausea med would need to be prescribed by her GP, and asked when she'd last been assessed by a doctor, especially when she'd last had a med review. Last time she saw a doc was the oncologist, Nov 7th, and the battery of tests they did at the end of October, so I put in a call to her GP surgery. Fortunately, she's already put in writing that she wants me to be the one to liaise with her medical teams, and is happy to share her medical info with me/that I'm the one doing her personal care and med management etc.
GP called back, and was great. Gave me a huge list of meds to remove from mum's list, all the diabetes meds - said it's best at this point to manage with insulin only, the other meds will only throw numbers, and she's on so many tablets for different things... but that she's at the stage now where she's in palliative care, not long term treatment, and it's about symptom management and keeping her comfortable. Especially once she reaches the stage where she's unable to swallow tablets, it's better to start reducing them now. She cut a load of medications from the list - three different tablets for diabetes, one for blood pressure, a cholesterol reducer, a few others I can't remember right now - basically left her on painkillers that she's been on since her back surgery a decade or so ago, but that also seem to be managing any pain from her cancer at the moment (and she's sent through a script for injectable "just in case" meds that nurses can administer if mum makes another turn for the worse, they like to have them in the house before they're needed, especially with the Christmas period coming up and finding a pharmacy that has them in stock would be harder if it was Christmas day/boxing day etc), and she's still on the blood thinner, plus prescribed two anti-nausea medications to trial that she hopes will help mum's appetite.
I made sure I ate a proper meal last night (well, a microwave ready meal, but still better than the odd snatched sandwich I've been doing lately), and hit the hay at 10pm, woke at 5am. After checking on mum I did more laundry, living room and kitchen tidying and cleaning, gave my Spaniel/Border Collie, Pixie, her breakfast early so she had time for that to settle for an hour before taking her for a walk - it was that classic British Winter weather of drizzling rain that soaks you though, and I'm gonna have to start wearing wellies instead of trainers because the park is a muddy swamp right now, but that's just how Pixie likes it! She's 11 now, but doesn't know it, and hasn't been getting nearly enough walks since all this started, so it was good to get her out, and see her enjoying splashing in puddles, rolling in the mud and having a blast. Didn't see my dog walking friends tonight, but popped some Christmas cards through a couple of neighbours doors on the way home, then chucked Pixie straight in the bath.
She's been overdue for a bath anyway, which she really doesn't enjoy, but is very good about tolerating! When I cleared the outside pond of excess pondweed on Sunday, she has a blast if I throw bits for her to catch (she always expects games if we're doing anything in the garden), so she was smelling pretty silty and pondy anyway, and I got a new horse/dog shampoo that's supposed to get the white bits really bright, so she had a thorough bath, then the post-bath zoomies while I tried to towel the worst off, then gave her a blowdry. She's now sleeping off the excitement while I finish typing this and check my notes, I had to clean the bathroom down again because a wet muddy dog gets hair everywhere, so dog towels, her harness and lead, and collar are in the washing machine now, bathroom cleaned, bro is doing some hoovering and going to check mum's bloods for me while I change into something less soaked and dog smelling and get washed up myself.
We're due a lot of visitors and phone calls today and Wednesday, thenn the hospital bed is being delivered Thursday, so between visits and calls I'll be organising, cleaning, sorting through mum and dad's stuff to make space so we can get the hospital bed in and set up as soon as it arrives. Lots to do, never enough time to do it in, and I feel weirdly guilty for making time for myself to get an early night last night, but I've running myself into the ground for weeks now, and I'm no good to anybody if I'm not sleeping or eating, or getting the dog out for the odd walk at least!
