This feels good letting this out and I know you will understand why Im at my wits end re the whole carry on.
Re pad, even when Im down to one hand only they often just put the bottoms / pants / pad and baby wipes in reach and leave me the kylie pad to roll a new one under me. My skin is sore but have used various creams etc and managed to prevent it breaking so far.
Im under urology and gastro for bladder and bowel and also seen by neurology for the condition which is causing the majority of this so its not something that is “being done to spite” anyone as otherwise why would consultants be involved and Im not that sort of person anyhow.
As Im a large person and as no room for hoist etc and not safe to roll me despite some having done it in the past, it apparently hurt their backs maybe because they didnt raise the bed to assist heightwise so when changing it can take me an hour plus to change and a bin is left beside me for putting the pad and wipes in,
Yes commode liners, at this point I dont think will make any difference re smell, its very stained and despite regular scrubs with toilet brush, neat bleach when I can move around it doesnt impact on it at all.
The other thing would be disposal, carers done do “cleaning / housework” so even pads are put by me into nappy bags and into the bedroom bin which is left beside me, when the bin is full, they pile it till its toppling as its not up to them to empty it as thats cleaning, the outside bin is about 5 steps outside the back door so if I manage to change the bag in the bin and sit the full bag ready to go out even with asking it can be walked past many times so friends call twice a week and take stuff out to outside bins. They also tidy up the mess from the carers.
Ive given the carers vicks to put under noses and face masks for commode but they only want to come in and do bare minimum (meds and heat packs, fill in book) when Im fully bedbound which is often, its a nightmare. They are usually here less than 5 mins,
I have to ask for food / drink and trying to remember whats in the fridge can be a nightmare as some wont look in front of them and if they cant see it easily or its not something can be handed to me directly then can do without.
I do have great friends who call in and leave me meals and make sure I have something to eat. Put the washing on and generally clear up the mess from the carers when they do give me somethng to eat as packets are left open, butter uncovered on bench, bread open. I know I sound like Im very ungrateful but I wish I didnt have to get people to clear up after carers.
They dont do cooking so will only heat something up but if I cant explain exactly where it is and when explaining often walks off anyhow my meals often consist of chocolate, crisps, ready pack sandwiches and when do get something heated I end up having to ask them to heat fully as often 2-3 mins does not heat a meal.
My diet is terrible, fruit goes to waste as I keep the basket in kitchen as little room in bedroom and apparently it will make me *** more, if I ask for a piece of fruit, I am often told its gone off and its sat aside for bins, friends often discover its actually fine and perfectly ok to eat but it makes me *** more so thats why I think not getting it.
Washing / drying clothes is another battle as its not “one of their jobs” although the care plan says it needs to happen to keep a supply of clean dry clothes. When the dryer goes on, I have a notice on the door of it asking to clean the lint filter but its mostly ignored. Ive found dry clothes in the top of a basket with wet washed ones underneath, Some will put on a wash, some wont. Thats anothr battle.
Any dishes are just left in the sink often till they harden or run out, cutlery can only be used once when/if making something so if bread is sliced thats one knife, buttered thats another knife and yet another knife to cut into smaller pieces (3 knives where one will do, all chucked into sink)
The manager pointed out I was being pinickity and petty but I dont like finding my things ruined all the time or things that have been broken chucked in kitchen bin where I cant see it and nobody knows nothing about it or even told me about it. So the bread bin, toaster, stick blender, george foreman, mugs, a cassorole dish all jumped into the bin off their own accord. I dont believe that but what do I know. Steak knives and other knives are chucked in the sink and can be there for days in dirty water which destroys them but thats petty.
The care plan does cover the commode but it covers other things too that dont/wont do as well. Preparing meals / personal care / ensuring clean tidy environment LOL thats an absolute joke.
I cant manage without them according to SW but she knows how bad things are and that I am at my wits end. SW is fully aware of all this and as no alternative except the nursing home which means if I was there again I would possibly lose out on the move to somewhere adapted. Im very frustrated and biting my tongue daily.
After the last meeting things improved for about 10 days and then went back to their normal. When I am fully bedbound which is approx 10/12 days out of 14 so majority of the time, I end up in this **** literally and figuratively.
As an ex carer, I am appalled with this whole situation but trapped in this nightmare.
Thank you for telling me about the biological powders, I didnt know that hence my post. The cats tray is kept under my bed so that majority of the time I can scoop it twice a day and when I absolutley cant, friends come in and do it and do the house bits as well as actually feeding me when needed. Apparently there isnt time for that with hot food as I have been given too hot before and spat it out and I still need it heated thru but no time to let it cool down.
They are never here anywhere near the full time of the call and while I appreciate that they need travelling time taking 20+ mins off the call is plenty as one has said all their round is within a 5 mile radius, a couple of times a day and I know from discussions they are planning their morning walk after cafe breakfast so while I know they are busy, Im losing the guts of an hour+ a day. The sw is aware of this too and the records show time in time out but sw is afraid of it all falling apart completely.
My friends are only able to help me out ad hoc, its different ones for an hour or 2 twice a week which means that my social time for chatting with them is impacted which leaves me more isolated.
Carers are provided by a care package which is funded by social services the sw is the comissioner of the care package but as I say, she is over a barrel as she is aware of how things are
She has actually seen the commode situation herself, she arrived for a impromtu visit as was in the area, the commode stank to high heaven, i was in bed, carers arrived for call and gave meds and did heat packs and went to leave, she said are you not going to offer food / drinks / do commode - carer said no as they had already run to their alloted time which sw pointed out they were in the door less than 5 mins, they werent aware she was the sw and told her would sort it later and walked out the door as she was speaking to them cutting her off.
The manager denied to her that the carers would do that but SW cant pull them out althoughter and is afraid will quit as no other options and I would be in a nursing home which I dont want in any shape or form as I was offered a place in the cheaper one that SS uses and absolutely hated it.
I was in a different one next time as cheaper one was full and it was far better however I couldnt make up the difference longer term and dont want a nursing home place. I was in this one for almost 5 months at one point while tried to sort care package.
In the cheaper NH I was in a room often unused and they forgot to wake me for meals twice in 3 weeks and I was taken for a shower with a sheet around me despite me not wanting a shower - so I had a shower. I dread to think what would be like longer term
