Wednesday, April 25, 2007

happy days......

We have finally got a new flat on the second floor with a lift so I can come and go as I please.

It' s a lovely sunny flat, two bedrooms,one has access to the bathroom and the other has a balcony off it.

There is also a storage room for bits and pieces as well as a communal courtyard with room to sit in the sun and everyone has a part of a big shed out the back for bikes etc. All the neighbours we have seen all look very pleasant.

We sign the contract on Tuesday 1 may at 14.00. We hope to move as soon as possible.

Its brand new so there is only concrete floor so we have to buy some of that click laminate and the windows are very long so we need alot of new curtains, we have about 10 windows.

Lots to do but its going to be wonderful place for us to live.

My favourite market, the Ten Katemarkt is close by and there are lots of shops and little cafes , bars and restaurants all around.

We are both very happy at last life can go on again now that we have this new flat.

Sunday, April 22, 2007

Don’t take it personally.

It was a red-letter day today as I slept all through the night last night first time since end of November.
A whole nights sleep, 9 hours of non stop sleeping, could have slept on till 9 or 10 but something woke me up and then I got that panicky feeling which usually means get to the toilet right away

Yippee we both had a whole nights sleep about 9 hours non stop sleeping which is wonderful for a change. Think this means my bladder infection has cleared up now which is good news.

Still no prospect of a new flat, I did put my name down for two places but neither is my real preference; one is in sheltered accommodation. What they call a WIBO woning here. Its on the 10 floor in Osdorp, so right out of the centre about 20 to 30 minutes for Richie on his bike, for me that would be almost a day trip.

Really was hoping for a ground floor flat, would love to have a garden no matter how small somewhere for me to sit outside with the dogs would be brilliant.

They are really messing me around with everything. I appealed their decision to give me a wheelchair that is not comfortable and therefore not suitable for me at the beginning of March was told I would hear the decision just after my birthday on the 17 March.

Finally I got a letter this week and instead of a decision it told me that as I sent my appeal in an email via my case manager (she told me to do this) it was not signed so they could not deal with it till it was signed and it has to be there by this weds or they will refuse to review it.

What a slap in the face, it’s taken them from 11 March till this week the 19 April to let me know.
I sent the email to my case manager on 11 March; the department that discovered there was no signature did not receive it to vet it until 12 April. Where was the email between 12 March and 12 April?

This means that I have waited to hear their decision for more than a month, while all the time my appeal had just been sitting in the in tray. By the time I get my own wheelchair it will be the end of summer as it takes three months between ordering and receiving the chair.

Friday, April 13, 2007

What a life!

I am getting alot worse I can't stand up at all anymore have home care for 21 hours per week. An organisation called Fontis send around nurses three times per working day to help me on and off the toilet.

Tonight we got a piece of equipment a sort of hoist to get me in and out of bed and on and off the toilet. It has a padded bit you put in the small of your back and then the machines motor hoists me up to a standing up position and then raises me in the air and places me on the bed or toilet or wheelchair.

Only problem this flat was not designed for this sort of equipment. MD is having to get rid of all the carpets in the front room as its too difficult to manoeuvre all the equipment over varying layers of carpet.

Its my darlings birthday tomorrow sadly could not get to any shops this week and have nothing for him.

Hope its still going to be possible for us to visit our friend Rosie soon but worried we may not be able to get there now I need so much more these days in terms of a special bed ,one that sits me up and raises and lowers me, plus supports round the loo and everything wheelchair accessible cos I can't walk a step.

Of the 45 people I mailed to ask for contributions to my mobility fund 21 responded positively and 6 said no we can't help and the rest never replied at all. Shame as I can do with all the support I can get. Hope I did not offend anyone but was abit at the end of my tether with the council here and the delays in getting stuff I need and all the penny pinching bullshit while I get worse and have not had a life cos I have been stuck indoors since last July.

Tuesday, April 03, 2007

Home care or care less

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