I had a good night last night, in that I dozed off on the sofa I was so comfy, twice. I went to bed about midnight which isn't the best idea when you usually wake before 6, I'm trying to get back into some kind of sleep through pattern. I couldn't set the stupid timer to change the time the heating comes on in the morning, it's set to come on late because I was getting up late but coming on at 8.30 isn't enough when the carer comes at 9 so I set an alarm for 7.30 to put it on overriding the timer. Must try again tonight, it infuriates me. Even with the instructions it just wasn't happy, I must have pissed it right off.
Any way carer came at 9, helped me shower, made a cuppa and got me a bowl of Frosties (sorry Phoenix) I usually have plain cornflakes, muesli with yoghurt or rice crispies and a banana chopped up in them. It was nice to be clean but oh dear it takes it out of me so much. I think I won't be doing it every day, it's just too much. I need to set the hot water for morning at least - saving money by having a shower and even washing my hands in the shower (it's only me usually and I put it on for visitors here for any length of time, anti bac gel supplied). The washing machine and dishwasher are cold fill so I don't need the boiler working harder burning more precious oil just to wash my hands. Shower is obviously electric.
Donna came late morning and she stayed till about half past 5, just chatting, reminiscing, filling her in, talking about how wonderful our kids are and how much we love them, who they take after. One of the GPs from the practice came to see me and suggested I drop a steroid tablet and see if the headaches have gone in that the radiation has shrunk the brain tumour enough to take the pressure off. Need to remember that in the morning. Maggie came and heated some soup and buttered a couple of slices of bread, put some stuff in the dishwasher from this morning and that was all that needed doing really, though I did forget to ask her to take my laundry bin upstairs so I don't have a heap of dirty clothes on the floor. I asked Donna to do it instead. We had a lovely day just sitting chilling. Simple things.
At 6 I heard what sounded like someone messing with my bins, then looked out of the window and remembered I ordered my delivery for 6 to 8 hoping the carer or my friends could put it away. I told him I was very disabled and could he bring them into the house more so he did, and that included putting a basket that may have been on a wet outside floor on my SODDING NEW SOFA. What an inconsiderate idiot. I bet it was because I asked him to walk 5 more steps. He literally threw some ready meals on the floor, I asked him to put them in front of the TV so I could at least put the few fridge items and the frozen meals I ordered (putting the bags on the walker and in the little shopping bag thing on it.
My 6pm visit arrived at 17:48 and 10 minutes before she arrived I rang the hospice to see if they had an out of hours number for the care agency as I don't. Neither do I have this magic book every single person asks me about like it's my job to get one. Anyway they said if I need someone I'm OK to ring Marie Curie but I don't and Maurice and Sue are coming later, I'm sure they'd put things away. She's not English and came in the unlocked back door and didn't know where the key safe was. There is no communication in this team! I'll be ringing social services tomorrow to let them know how unsmoothly things are going....
She shouted at me in the same way English people shout at foreigners, either because she just does that or because I can only speak in a whisper. I told her she didn't need to shout, I just couldn't speak. She said "There's nothing to do?" What? I said I'd like her to put my shopping away, that I'd had to put the fridge and frozen stuff away because I was expecting her at 6. There were half a dozen Tesco bags on the floor right next to her in front of the TV. She started fumbling about on the coffee table picking up drugs boxes saying "this shopping?" Again WHAT? I had to point and tell her about 3 times before she could see what was right under her stupid nose. So she said she'd try and do all that, I told her she had 20 minutes and I'd had to put most of it away so she should have plenty of time. I also told her she needs to wait until I've finished speaking and not walk into the kitchen because I can't make myself heard. She said she'd go and have a look what I had in to have to eat. Told her I know what I have, I'd like the mushroom lasagne. She didn't ask me how to work the microwave but luckily figured it out. Then when it came to the shopping she was just going to take it and put it anywhere, I made her stop and let me tell her where stuff went, I can't be crawling on my hands and knees trying to find stuff because I don't know where it is in my own house. I say crawling because I expected her to put things in stupid places by which time I'd be too exhausted to stand. The kitchen paper she pointed out I got as far as saying "that goes in the bottom drawer...." she interrupted with "bathroom" "NO! You need to stop and listen to me finish, it's not toilet paper it's kitchen paper". She picked up a bag of potatoes and told me it was fruit. Sheesh. I'd already put the fruit on the worktop she just needed to take it out of the bags and put it in the fruit bowl. Then she made a cup of tea, my meal was ready and she checked to see where the key safe was for next time. Joy, looking forward to that, being treated like an idiot in my own home by someone who doesn't know the difference between fruit and veg or toilet paper and kitchen towel.
Right Maurice and Sue have arrived, time for normality!
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10 comments:
Oh my goodness Lisa, how you stop yourself blowing a gasket I dont know...I can't understand that the so called caring profession employs people with such low intelligence...I am sure there are plenty of wonderful people out there like mny Fran who until recently looked after a lady in her own home with alzheimers...I used to pop in a to see and hear the way Fran acted made me proud...She would stroke her hair and talk to her as you would any well person.
Like I said in an earlier post, lets hope these are just teething problems.
Oh and Maurice and Sue sound like the perfect friends...
T xx
Let us all beat cancer. It has no room on our lives and it should not destroy more lives sooner or later. My way of doing it is having an alternative cancer treatments that can be helpful and useful to me and my body. Thanks.
I used alternative methods, I used diet, increased meditation and have always been holistic in my approach to my disease. I resent that you are implying I should have done something else, something better and if I had I'd not dying."My way of beating is using alternative treatments". I expect you're peddling some kind of snake oil as it looks like a link which I won't be looking at.
I don't think I'll be publishing any more of youre comments unless you have something constructive to say.
Hi Lisa
I dont know how social services carers work, but if you are using a private care company (even if its subcontracted by social services) then you should be given a personal Careplan by the Company office. If you dont have one yet, ring up and ask where it is.
This is usually in a ring binder and has your basic personal details, emergency contacts etc. Then it should state exactly what each call involves. So if you want shopping putting away on a Thursday evening it should say so. If you want a shower on Monday, Wed, Fri, it should say so. The idea is that each carer reads what is in the plan and dont need to ask you what needs doing each visit. The carers should write in the careplan what time they arrived, what time they left, a summary of how your are (i.e they should spot any significant changes but in reality you know better than them). They should write down exactly what they did, including any meals they prepared or drinks. They should write down if they used the keysafe to let themselves in and out, or if your doors were open for whatever reason. They should write down your preferences for things as you go along. Then the next carer reads this BEFORE they start the shift and as they go along they should start to pick up a routine.
However, there will be a lot of input needed by you in the first week or so until they find their way around your house/kitchen and find out your preferences.
The problem with Social Services care is that though it is usually the cheapest you get short calls and different carers each call in a random pattern. If the care company is more expensive you more usually get a set 'team' which doesnt change and you get to know each other better.
Sadly the pay is usually around the equivalent of Band 2 in the NHS, and you're not going to get highly educated articulate people working for that. But pay levels dont equate with respect, dignity and compassion, those should come as standard!
If you have the energy, write a few notes about what you want doing as standard each shift, and then any change from that you can tell them in person.
Fiona
Finally today the supervisor arrived with said book. They didn't have any blue books (seriously stock control?) until today. She did the care plan and took all the details you listed above. All that is now on record. She spent half the visit talking about her own health problems and at one point said "still there's people out there worse than me", I just started at her waved my hand and said "Hello?" "Oh bless you". Yeah bless me!
Funny that she arrived shortly after I saw your comment to publish....I rang social services this morning to speak to my case worker just to let her know about the issues I'd had rather than to ask her to do anything. Aliana told me she'd be coming but I totally forgot, wasn't given a time. At half past 3 when she'd finished telling me about her eczema and diverticulitis and filled all the paperwork in she asked if I usually have a sleep in the afternoon. "Not if I keep getting vistors no" "You have a snooze then" "Yes I shall".
Then the phone rang halfway through said snooze and I can't be arsed now! Early night instead if I don't drop off before.
Thanks for your comment, I was well prepared when she arrived, very serendipitous! (Always wanted to use that word)
Hi Lisa
I hope things start to go more smoothly, but be prepared to be the person that keeps everyone in order!
I switched career to work in social care late in life. Having done a few different things including being an office manager for a small office.
When I started with my current 'home care' company, I found so many things that niggled about the way the office staff got things what I considered wrong, I was constantly emailing them and moaning at my husband. Eventually he said to me, 'if you think you can do it better, start your own business. If you can't then stop fretting over the management and do what you do best which is look after your clients'. Wise words!
The company I work for is 'upmarket'. You have to be on a whacking pension to afford it. I work for clients who live in the sort of area of Cheshire where the footballers and WAGs live.
And we still get it wrong, even though the office do their best to match carer with client, to set up teams of no more than 5 carers to a client. I get a rota a month at a time and often that remains unchanged for a year or so, i.e until the client moves away, or goes into hospital, or dies. We refuse to do calls shorter than an hour - I typically do 2-3hr calls, sometimes longer, which may even include eating with the family. It's a world away from Social Services, where the carers probably dont know til that morning which clients they have been assigned.
Yet still I get switched around at short notice to cover sickness, holidays, emergencies or just situations where there has been a cock-up in the office. We have meetings with management where we beg please give us a proper diary BEFORE we go into a new client to tell us what needs to be done, but 75% of the time it doesnt happen, and the diary gets built up over time by the carers.
You will get good ones, and crap ones, just like in hospital. Some will chat, some will be silent. The best will learn quickly by osmosis what you like and what you dont. Unfortunately even if you beg and plead with the 'office' to keep sending you X or Y or Z because you have clicked with her, they wont. They switch carers to other people at short notice to suit what keeps their rotas working.
Make the best of the good ones and grit your teeth over the bad.
I'll be keeping tabs on how they shape up!
Great posts, Fiona ... very useful tips
@ lisa, I am surprised you published snake-oil person ... aren't you moderating comnments?
Yes all moderated. I considered it and decided to publish the last one so I could respond and anyone else who may get comments from them as a warning. It's nice to have a little vent sometimes
I agree such foolish people write these crazy snake oil treatment comments, I have the cure for cancer! I always think if you had the cure, I would see you on every news channel available. Most I think just trying to pinch a penny taking avantage of people in desperate need. Some just plain stupit. Thanks Looney for posting it because it does allow us to comment on it and call it as we see it. Just makes me angry when people try to take advantage of people battleing cancer. Violet
I've come across so many "cures": apricot kernels; magic supplements; I've forgotten now!
I had a nutritionist, long lost touch friend draw me up a diet plan including supplements, normal ones. She'd already done a ton of research plus as part of qualifying, because her dad also had bowel cancer. He sadly died in the same hospital while I was in having my major surgery to remove all my tumours.
I did my own research about how cancer thrives in an acidic environment and read papers on it. I gave up wheat, meat, alcohol, salt, sugar, dairy, caffeine. It makes sense that if I have a disease in my digestive system looking after it to maximise my nutritional intake.
I also needed to increase my positive moods, so meditation and relaxation (which I already did), spending time looking at nature. I spent most of last year in my conservatory watching butterflies and rescuing sleepy bees who'd been caught overnight with honey on a spoon, just watching the greenery and baking in the sun safely.
I felt very at peace with all of this. It got me through my initial bout with cancer, then thinking I was in remission for three years I gradually included chicken and fish, but rarely meat. Staying away from dairy is easy since I don't really like it but didn't refuse it if I was out. I had the odd drink. Nothing major but I did let the diet slide. When I was re-diagnosed surprising everyone after so long I went right back to it. After getting very drunk a few times on gin, vodka or champagne. Who's to say my diet didn't give me extra time in those 3 years, nobody. But I did it along side traditional methods, everything I could to stay here and had a long time to spend with my children since finding out.
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