After we organised the loan of the comode and bed MD and I had a long talk and decided that we would have to use Thuiszorg, the home care people to help me on and off the toilet. MD can't keep leaving work and racing up and down rescueing me off the loo.
They sent one of their coordintaors to do an intake with me. The woman that turned up on wednesday was very pleasant and certainly she was no problem to talk to about our situation. By the end of our talk we had agreed that someone would come by three times per day to shower and dress me and help me on and off the loo.
MD and I felt especially relieved as we both had not realised quite how stressed we had both become in the couple of weeks since my birthday that I can't stand up anymore.
The woman from intake went off with our spare key with the bright yellow Bart Simpson. She promised the care could begin the following day and told us someone would come by with a key contract and she meanwhile would leave the care folder for the staff's reference.
Later that day she called to say the care could not start until friday and added she would call to let me know if it would start friday. Thursday afternoon there came no call so I phoned and was told the woman I needed was not there and the only thing admin could do was send planning a mail asking them to call me at 8 am the next day.
The next day there came no call at 8 am and also at 8.30 noone to help me on the toilet and I had to call MD to rescue me off the toilet. Just as he was lifting me back into the wheelchair someone called but sadly left no messsage.
At 10 am I got another call, it turned out to be the person who had left no message at 8 am. He wanted to let me know he had been too busy at 8.30 am to come round. in fact the team was too busy to be able to help me before 11.30 each day. That meant they could only help me at 11.30 each day.
Well I immediately told him what I thought of that and how we had only agreed everything the day before and one thing was for sure and that was that I needed help at 8.30 then 10.30 and once more at 12.30 and 11.30 only was not acceptable as I would have to wait from 6.30 to 11.30 to go to the toilet and that of course was not acceptable as well as not possible.
He told me he would ring back after he had discussed the case with his colleagues. Later he called back to say the team could not accomodate me and my details were being passed over to another team and they would start monday.
On monday another coordinator from the other team arrived for another intake, she seemed more practical. MD decided he would reshedule his hours at work and go in at 8.45 so then I would not need any help until 10.30 and then at 12.30 and 14.30. We agreed all this and the coordinator left.
She promised someone would be round later to help me. Noone came round at 12.30 and MD had to come home early again to assit me. The coordinator called just after 12.30 so I told her no one had showed up and now no one need come as MD had come home to rescue me off the loo and was planning to work via the pc.
The first day proper was Tuesday 3 April again the first person should have been here betwen 10.15 and 10.30 and arrived at 10.45 and left at 10.50. At 12.15 there was another no show I was instantly so desperate to go to the toilet at 12.30 and somehow struggled on the wc chair and sat on wc from 12.30 til 13.15 til Richie could rescue me.
The person arrived an hour late at 13.30 to assist me by that time Richie was home from work and I had a very sore bottom and a lot of pain. Told the late 12.15 arrival to cancel the 14.30 as my partner was home due to the no show at 12.15 to 13.00.
Wednesday 4 April again everything totally not as agreed on monday of the same week. MD was going in later so went to the toilet at 9.30. no sooner finished then the first one arrived at 9.40 instead of 10.30 and I sent her away told her that I did not need her then but at the agreed time of 10.30. The next one arrived around 11.00 also too early should be at 12.30. She promised to return at 12.15 to 12.30 by the time she arrived at 12.45 I was desperate hadn't been able to concentrate on anything apart from not pissing my pants for half an hour. Murder!
If only she had turned up on time as I had to call Richie just before she came to say no one is here again and I am desperate. Luckily for me she right after, but not for MD who zoomed around in minutes like a bat out hell. Only to find he had a wasted journey and the home help here when he arrived. On his return journey he was knocked off his bike by a car.
He spent the next day at home feeling stiff and painful all over and really stressed we both were.
Since organising the home care we have both been even more stressed than before plus we pay an own contribution.
Monday: 10.30- 12.30- 14.30
Tuesday 10.30- 12.30- 14.30
Wednesday 10.30- 12.30- 14.30
Thursday 10.30- 12.30- 14.30
Friday 08.30- 10.30- 12.30