Life & Sweet Challenges with Dementia & Disability

This week has been a bit of a doozy.

As well as challenges with the boys, who’ve caused right humdingers, having my mum living here is becoming more and more challenging as time goes on.  At 81, she’s had a hard working and busy life, yet an unfortunate stroke a couple of years ago, has seen her left as a shell of her former self, with the occasional sarcastic wit showing through.

This last week, it all started on Monday, when I found her on the floor. Getting her up is no mean feat, but with the aid of our lifting cushion, it’s doable.  It took about fifteen minutes to get her off the floor, at which point, she announced her arm was broken. This is the woman who fell from the top of the stairs to the bottom, of hard wooden stairs a couple of years back, and got away with just bruising, which I shared on the blog a long time ago, yet she does something nasty to herself falling on carpet!  Poor thing.

The carer arrived, but as she’s diabetic, and A&E usually takes hours, we didn’t go in right away.  I wanted her fed and stable on her insulin.  At A&E, there would be no opportunity to get her food, and I can’t leave her in the car to go and get any, as she gets stressed out if she thinks she’s alone.  When we rocked up, we were lucky enough to find a parking space outside the door, which is very unusual indeed.  It did take a few circles round for it to happen, and I was dreading having to park a mile away and push her in the small wheelchair, as that’s punishing.

In A&E, we sat.  Within an hour, I had to take her to the loo about 6 times 🙁  Getting someone with a dodgy arm and struggling legs out of a wheelchair and onto a pot, is an achievement in itself, without having to do it multiple times in an hour…..  By visit three, I got the loo roll for her, and in the process, set off the automatic flusher while she sat on it.  Cue soaked undies and trousers.  🙁

I’d to ask a nurse to get me some paper undies and a pad for her to wear under her trousers, so she wouldn’t feel the wet fabric.  Honestly, could it get any worse?  Around 3 hours after arriving, we were waiting for the plaster technician, to cement up what we found was her broken wrist.  She was about losing the will to live by that point, needing to pee every few minutes, and generally very unwell.  A&E seriously needs cots or trolleys for patients who are unable to cope in a chair for so many hours.  At least lying down, she’d have been comfortable for the long wait.

On the way home, I’d to get a nurse to help me get her into the car.  It was pretty much a lift up and slide in using my knees.  Not very ladylike, but we got there.  Over the next few hours, she deteriorated quite badly, unable to talk or move her fingers.  A day or two of that, and by Wednesday, she began to come around again.  The worst bit was how often she needed the loo.  I got a sample from her, but have to wait for results.  As of now, they still haven’t come through, so no antibiotics.  She can talk now, but her memory is zero seconds.  Re-read that.  ZERO seconds with frequent hallucinations.  She can’t remember she has a broken wrist.  Has no idea it’s broken.

I called for an emergency district nurse one morning, and got told ours couldn’t come, but one from the hospital would.  When she arrived, she thought she was only here for bloods.  I didn’t let her go until mum was washed, changed and the bed covers freshened.  Thankfully, it was an old school district nurse that didn’t ignore me and leave me to it.  She showed me how to move mum using a sheet, and what to ignore and not to ignore about her protestations re being moved.  Many won’t show us what to do, I suspect because they don’t want to risk being sued if it goes wrong.  I’m glad we got a sensible one.

She’s distressed and upset every time I have to move her to sit on the hurriedly secured commode… On Friday, we had a little reprieve when she perked up, and her very understanding carer wheeled her round to the local coffee shop for ice-cream.

We’re back to square 1, with her largely unable to move much. Mum keeps pulling her covers off and trying to stand up.  How she manages to push away the chairs I have barricading her bed, I have no idea, but she does. I have to literally hold her up by myself as the man had a knee op a couple of weeks ago and isn’t meant to lift anything heavy, although he’s had to help me a couple of times when I couldn’t get her back off the commode. His newly operated on knee swelled up significantly, and he’s had to stop helping me, but he would if I asked.

She’s a fair bit heavier than me, so lifting her up when she’s got only one arm, and with legs that aren’t holding her weight, my back is in bits.  You really can’t imagine how hard it is to transfer someone who can’t help at all.  I put incontinence pants on her, but she can’t remember to use them, and constantly tries to get up.  With only one arm, she can’t use her zimmer, but her legs aren’t holding her, so that’s a moot point.

I’ve asked for an emergency hoist to help me lift and transfer her.  I needed it on Friday….  The most they could do, was get an OT out to me for Monday morning.  Tomorrow will be interesting. I’ve also been told that if the OT says a hoist will help, that it might take 4-6 weeks to come.  The OT did phone and say there are emergency stocks of them – so why the hell couldn’t they have given me one for this weekend?  I’m beginning to wish I’d called the paramedics a couple of times to help me off the pot with her, but that would leave her uncomfortable for the hours it might have taken for them to get here.

She’s hardly eating, drinking very little, memory is completely shot, and she can’t support her weight. But then again, a hoist is a two man operation, and I’m one person, so they still might say no to that, despite the lifting cushion being a two man job, but I manage that perfectly well myself..Duuuhhhhhh.

The carers who come in aren’t allowed to lift, so I’m on my own with it. They can help support while I lift, but that’s about it. I’m also waiting for them to tell me no more pushing the wheelchair, as it might be too heavy. Only one carer has mentioned it, but that’s all it takes for a complaint to reduce quality of life again. If they stop the chair, I don’t know what I’m going to do with her, as there’s no way I can get her into the car now. Actually, there’s no way I could get her downstairs, even using her chair lift, on my own right now.

She’s scared, and gripping onto my hand for grim death while I’m in her room. I feel so sorry for her and there is nothing I can do to make it easier.  I’m hoping the bloods she had done comes back with something, as she’s obviously either had another stroke, or there’s an infection lingering somewhere. Breaking her wrist has almost done her in, but her heart is strong as an ox. The wrist is such a small thing in the grand scheme of things, but such massive consequences for her life and for ours.

To end tonight, I am off to sleep, knowing that she’s not happy, not sad, has no idea where she is, and is constantly waiting for me to come back to see her, despite not knowing who I am for much of this week.

I’m hoping tomorrow brings some news to make her last days, however long they may be, a little easier for us all to cope with.  And in between that, I find time to work, blog and go for runs too.  I think I must run on adrenaline most of the time.  I wish I could say that it all didn’t agree with me, but somehow, it seems to.

I’ve written about dementia before, here and here, if you wish to read the early days.

My brave, strong mother, is fighting the fight of her life.

Take care all, and tell your parents you love them, while they can still remember.

Lesley

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