Yesterday was the two year mark from when John Edwards kindly cut me open and removed my pleura, pericardium and diaphragm. Two years of extra life that I wouldn't have had. Funny, he was reliving his day for me, and I could still feel the fear he had in the way be spoke about sitting waiting for me to emerge from surgery. I remember the morning getting needles in my back and then when I awoke at 3 am wanting to die. It is so amazing how we can come back from the brink and keep on going.
I would like to thank Linda and Debbie for their comments about my Letter to meso and I do hope that it has helped someone along this journey.
I have been trying to get help to live in with my mam, she is fragile and 84, just before Christmas she had a fall and knocked herself out, cutting off her oxygen etc so I have been concerned about her being on her own during the night. After lots of research I brought in a company called "Helping Hands" who promised the world. How gullible I am, what they say and promote is nothing to what they actually deliver. Hence, after only 5 days I have cancelled the contract, although the helper will be there for 14 days (their minimum period) and I paid up front for 28 days, and given 7 days notice of cancellation they have thrown on another £300 + worth of charges. It's not the charges that have annoyed me as so much as what they do. My mam called out during the helper's 2nd night 5 times, so I got a phone call the next morning from the Company telling me they would be charging more as the helper would be unable to do her job if she had a lack of sleep, how was more money going to give the helper more sleep? The Assessor said on her visit "over the first week they found the client would interupt the carer as it was a stranger living in their home and this was quite acceptable." If it continued past a week then they may ask for additional help to be paid for. We were told that we could bank hours, so when mam's at the centres for 8 hours 3 days a week that would cover the helper working all day the other 4 days, this was totally put down by the manager on the phone saying that if she had more time off on one day that was down to our organising and not reclaimable ..
I have even kept one of my original carers for mam on so on top of the centres, the carer was also off duty Monday and Friday morning, I get a phone call on Thursday from the helper saying she can't get mam up for the centre and she needed to go to the town etc to do her own things, bearing in mind she had been away from the house all day Tuesday and Wednesday. So I had to call my other carer to come in and work Thursday as well!
If you ever call in an agency record what the assessor say's will happen when they come and visit the house and ask the 1 million questions. Another thing we told them mam smokes, a max of 5 a day, (also covered on their list of questions) so they sent a non smoker who detests cig smoke and then accused us of not telling them she smoked. This is because they are short of carers and didn't want to swap or lose the business, so the blame lies with us. We were told all experienced with the elderly, that isn't the case either.
So I have now done research pretending to be a carer looking for work and believe me I was surprised at some of the sites. To make the most of a paid holiday and to have the best time (that's how its worded on one site) apply to be a carer for short term, ensure you get clients that enjoy visiting the theatres, cinema's or insist it would be good for them, as you are paid for and get to visit sites free. You only have to attend a 3 day free course on caring and your employed. Not what the brochures say to us punters.
Sorry I am so annoyed as I thought after meeting the representative from Helping Hands my problems and worries would cease, this last week has been more problematic than the 5 years I have had carers in for my mam!
Also I think if you are terminally ill and need external help it is wise to know about these things going on. I didn't realise what such a big industry it is and how much money is to be made by the agency's etc. Our care home workers get minimum wage while working in homes and I would think these agency's staff get the same yet the company's are charging a fortune, I know everyone has to make a living but then the staff who have been on the books then want the same kind of money the agency's charge to work privately. What an easy way to live, especially if it is with someone like my mam, aid in getting her washed and dressed, feed her once a day with something warm then sit her in a chair and leave her to watch tv, help her undress again for bed and by 8pm she's in bed. All your food is paid for, no house bills, everything you earn is pocket money. I know it takes a certain kind of person to want to live with an elderly person but if you are doing 6 weeks on two weeks off and changing each assignement you are laughing all the way to the bank.
Okay signing off, have emptied my mind of ranting, going to enjoy being alive.
Just had a phone call to say my meso mate Danny has died .. my thoughts are with his family.
Jan
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