Chaos

Share information, support and advice on all aspects of caring.
Yesterday was the day my wife was coming home from hospital.

Transport booked for 1:30pm.

Phone call from Abbi (unknown to me) at 2.:00 pm to say she knows my wife is coming home this afternoon and wants to come and do an assessment between 4:00 & 5:00

Wife sent me a text at 2:30 to say she had just left.

Wife arrives at 3:15.

At 3:18 wife announces she wants to poo.

I knew this was coming at some time but wasn't expecting it quite so soon, had to unwrap the commode, use hoist for transfer, clear tools from bathroom where I'd started on adapting the bath panel to allow the hoist base to go under the bath.

Eventually got wife on commode after nearly removing catheter along with trousers and sat over toilet.

I later discovered that she'd had to vacate her room at the hospital at 10:00 am and had been in the lounge until her departure, she hadn't asked for the loo cos she wasn't in her room. It's impossible to get through to her sometimes about things like this, (i.e. asking for the loo when she needs it) and very frustrating at how it causes unnecessary problems, she just can't see the benefits in making life easier whenever possible.

At about 3:35 wife questions whereabouts of two green bags and a box which were on the hospital transport. Nothing like that came in, says I. This was all of her drugs for the next two weeks.

Phoned the hospital, pressed all the right options and eventually the phone just went, beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep.

Phoned the OT dept and it went to some sort of voicemail which told me I'd missed a call last week.

Tried both again, same result.

Look up "hospital transport Southampton" on google for a phone number - it's in Bicester, Oxford????

3:45 Answer doorbell to Abbi, tell her it's a bit inconvenient as I'm chasing drugs which are getting further away every minute, she was OK , left me some catheter stuff and said she'd come back next week.

Got through on phone to hospital transport and was assured a message would be passed on.

Wife still on commode and not pooed yet.

4:05, answer doorbell to Abbi, ? (whoops, turns out the first Abbi wasn't Abbi but the District Nurse), Abbi was quite young but very capable and helpful considering that she was there for an assessment, she helped put wife on bed (still no poo, which had seemed so important three minutes after arriving home) and dress wife again. She then went through her assessment of what was needed from carers.

Hospital transport driver turned up sometime into this process with drugs, having realised what he'd done, he wasn't on the way back to Southampton he is based at Milford about 4-5 miles away from us and actually lives about a mile from us.

First carer arrived at 8:45 and was very nice, competent and helpful, although wife not too keen on going to bed at 9:00, (I can see I'll have to buy a telly for the bedroom).

I really hope today is a bit quieter and calmer.
Lordy lord - what a saga! Hope today DID go more peaceably.

(Seems awful that it takes her so long to 'go' - can something not be done about that medically, or is it a 'psychological' thing in that she doesn't really recognise the cues??) (Sorry, I'm sure you're doing all that can be done, but it's a grim aspect of being an invalid, alas. Not much human dignity left, is there....)(My poor MIL with deep dementia is now doubly incontinent - she has totally 'lost the cues' of when she needs to do anything at all in that respect. Dreadful dreadful dreadful, that they should come to this pass....)
Thanks Jenny, yesterday was a bit more peaceful. The carers have all been good and helpful, but I'm beginning to realise how different things are with carers coming in. I thought I was doing the caring before, but in reality I was just basically chief cook and bottle washer. They are definitely doing things that I don't want to have to do like all over bed-washes and everything else concerning the daily ablutions.

It's not only the actual care aspect though, it just totally takes over the day waiting for them to arrive and not quite knowing when it will be, fortunately there have been none of the weird arrival times that I've read about others experiencing, (early days yet maybe),

My wife has suffered from constipation for many years, (her mother was the same) just about all of the drugs that she takes can cause constipation as a side effect and with her they do.

She takes Senna daily on prescription. I still think that that's wrong: it works as an irritant, once your body get used to it, it must stop irritating and therefore not work. I did get her to prove this some months ago by not taking it for a week and then starting again, it worked once taken again for a couple of days, but she can't retain that sort of knowledge and I have to go through the whole argument with her again several times before it's accepted, quite frankly I can't be bothered after a while.

She also takes Movicol daily which does improve things but my wife has very little feeling down there and doesn't always know what's happening, I had to put her on the commode again yesterday and after a good half hour she asked me to remove her as nothing had happened and wasn't going to - it had, (but not much), but she wasn't aware even that she'd produced anything at all.

I'm glad she's home, but with how it seems to have taken over my life so completely I'm struggling to be as compassionate as I ought to be.

I hope that once I've got the carer routine established in my head and re-arranged things accordingly it will get better, I'm definitely going to get out for a walk with my camera this afternoon, (chasing Dragons - see below) which I haven't managed for the last two days.
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Alexander_18021 wrote:
Fri May 18, 2018 7:57 am
it just totally takes over the day waiting for them to arrive and not quite knowing when it will be, fortunately there have been none of the weird arrival times that I've read about others experiencing, (early days yet maybe),

Definitely spoke too soon, 10:30 a.m. and first carer for the day has not arrived yet, I've just put my wife on the commode, with any luck they'll be here before she needs cleaning up! I really don't think I can deal with other peoples poo.
It takes a lot of adjusting to, if one ever really does. Very intrusive but you need assistance. Just too much to do all yourself.
I'm finding the intrusion less of a problem than I'd anticipated, (I think it helps that the carers seem to be very friendly and good at what they do), but it does seem to take over the whole day with four visits in 12 hours. I'm going to have to work something out on that front.

I thought I'd made a start on that yesterday by suggesting that the teatime (third visit) didn't happen until after 4:00 p.m., this would allow me to go out for a walkabout with my camera after lunch and I can be home by 4:00 for tea, (and biccies). A key box may be the eventual answer to that; I can go out when I like then, although they won't use the hoist without me there as the second carer, (strange how I seem to manage that without any problems).

I duly went out this afternoon after lunch, got home at 3.40 and there's a carer waiting outside the house. She'd rung the doorbell, (but the wife was asleep), I let her in, there wasn't much for her to do, (nothing really), I looked in their logbook later and it was logged as the lunchtime (second visit), the teatime visit didn't happen at all!

The evening carer arrived at 8.30 and the wife decided she didn't want to go to bed before 9.00 and sent him away so I put her to bed at 10:00.

I think we're going to ask them to scrub the second and third visits and eventually we'll end up with just the morning, (first) visit.

My wife has a hospital appointment at 10:30 Monday morning for which we've had to book hospital transport as our vehicle is not currently accessible by my wife, (plans are afoot for that). The transport people want her to be ready by 9:00 and so I contacted the admin people for the carers and they said someone will be there early enough on Monday to facilitate that, I'm not over confident of that happening after this afternoon, but will have to wait and see.
You have to work out what works best for both of you. A key safe is a good idea, but the hoist issue is problematic. Surely if she needs two people to hoist her she needs double handed visits? I wonder if you could barter for there to be less visits to be with two carers? This would give you more freedom and ensure your wife's needs were met at those visits whether you were there or not.

Melly1
Melly1 wrote:
Sat May 19, 2018 4:44 pm
You have to work out what works best for both of you. A key safe is a good idea, but the hoist issue is problematic. Surely if she needs two people to hoist her she needs double handed visits? I wonder if you could barter for there to be less visits to be with two carers? This would give you more freedom and ensure your wife's needs were met at those visits whether you were there or not.

Melly1
When the carers come there's only ever one of them, I'm the second carer. I can cope perfectly well with the hoist on my own - I give the wife the control if she needs pulling back into her chair on the descent or if her legs need positioning when going onto the bed. It's just the safety elf that won't let official carers do it on their own.

The original plan on discharge from the hospital was for her to use a *Standaid* rather than a hoist and the hospital were quite firm that that needed two people to operate it. When they couldn't make the Standaid work with my wife they switched to a hoist, I read the hoist instructions very carefully and there's no mention of two people being required to operate it. We are probably going to get a hoist fitted in the front of our vehicle as without being able to weight bear she can't currently access it, again, there's no mention of two people being required to use that hoist, and you can buy a base to go with it which turns it into the exact same thing as we are currently using indoors.

Very little happens on the two visits in the middle of the day: empty the catheter bag and rub gel on her knee, I can, and do, do both of those things when necessary. The carers are far better than me when it comes to the washing and dressing, but I guess that's just experience, I'll get better if I have to, but it makes sense for now to have the carers at each end of the day.

She could well be back in hospital later tonight anyway, she now has a huge prolapsed rectum, I'd show you a pic, but it's not pretty, imagine an apple hanging out of your ar**. Waiting for the Doctor to arrive now, been told it will probably be in the early hours this morning, (although when I first described it on the phone they said get her to a hospital within the hour).

Alexander: a bit tired, but mostly mentally and emotionally exhausted.
Alexander_18021 wrote:
Sat May 19, 2018 9:59 pm
She could well be back in hospital later tonight anyway, she now has a huge prolapsed rectum, I'd show you a pic, but it's not pretty, imagine an apple hanging out of your ar**. Waiting for the Doctor to arrive now, been told it will probably be in the early hours this morning, (although when I first described it on the phone they said get her to a hospital within the hour).
Doctor been and gone - 1:50 - 2:05, now waiting for ambulance, about another ten minutes if their info was good, then I can maybe go to bed, I've already set the alarm to phone Care Organisers at 6:45 to cancel for a couple of days, (or whatever) as requested by yesterday's last carer.

Ain't life just grand. :dry:
Ambulance left at 4:15, (I was in bed about 30 seconds later).

Hospital has just phoned to say that my wife is all fixed up and will be on her way home again as soon as they can rustle up some transport.

Being so quick has saved a whole lot of re-arranging with regard to other things over the next couple of days, I just hope they send all her drugs back with her (which the Doc had said was best if they went with her with the application? chart).

Off to shower now to try and wake up properly and attempt to feel a bit more human, I'm seriously out of practice with really late nights.