Friday, August 14, 2009

New Case Manager.

Tuesday I got a call telling me that an appointment was possible this Friday so that a speedy start can be made to adapt the chair.

The appointment was going to be in the afternoon, right away the disappointment was that Ludwine and Jenny, from the RCA would not be able to be present at such short notice.

Jenny will measure how the pressure is distributed and Ludwine evaluates how I sit and what my posture is like.

I immediately rang Jeanet, a friend of ours, who wants to be at all the appointments to make sure that everything goes well and everything is done correctly and with my best interests in mind.

Organised with Jeanet, that I will let her know when on Friday afternoon and she will make sure that she is here.

Wednesday early evening I got another call from Michelle about the Friday appointment, only problem was that Friday was ok but it could not be in the afternoon.

She proposed to come here at 9.30, saying that she hoped their visit would not conflict with my routine.

When I said it did conflict she said they could come by abit later, 30 minutes later, at 10 instead of 9.30.

That was the best she could offer me, so I had to accept, as I wanted the wheelchair to get adapted as quickly as possible.

Really hated that this was happening, especially when initially it seemed things could be managed so we had Jeanet’s support.

Sadly this new appointment meant that Jeanet would not be able to be here at that time, which really rattled me a lot.

Hated the fact that the new appointment would be exactly when I start to do my arm exercises and Richie does my leg exercises and massage and tablets and THC before, during and afterwards.

Wednesday night had quite a problem getting to sleep, worrying, finally got Richie to get me some THC vapour between 5.30 and 6 am.

The thought of the appointment was already getting to me, especially as these were the people who I hold responsible for my having been in bed for a year.

I hold them responsible for not making sure the chair was the right size, the seating is 10 cms too long and it is also too wide.

As soon as I got the chair I said it was too big and I did not sit comfortablly in it, their response was ‘’What would you know, you have only just got it’’

Every time I repeated it I was met with the same refusal toe deal with my complaints.

Last June I had an appointment at the RCA, the Amsterdam Rehabilitation Clinic for an evaluation of how I was sitting.

The appointment also had the goal of finding solutions to support me sitting properly.

The Zit poli, the polyclinic to assess my needs found that all my weight was concentrated on one side, this is where the huge pressure wound occurred.

They recommended that the seat be drastically altered, that the length should be made shorter and the width.

They also recommended more padding so that I could tilt the chair as well as lie down in comfort.

It was recommended that I intersperse sitting upright with tilting the chair as well as periods of lying down.

The consultant from ARCA, council advisors, Michelle was called to join us so that the team could explain what needed to be done.

The first thing that happened was nothing and I had to wait until the end of July before a start was made.

Straight away it became apparent that they would not shorten the seat, they would instead just try to alter the back rest.

This they did by screwing a wooden backrest onto the hardened plastic backrest, and then they started building a layer of foam rubber against the backrest.

During the whole process I was sitting next to them on the shower chair being put in the chair everytime they needed to check the changes.

At the end they arranged that I test the chair and Michelle would call back in a day or two to see if the alterations were suitable.

They were not suitable as they did not give me the support that I needed to have, there was another attempt to adapt the wheelchair.

This too was no good, sadly just before the third appointment Ton, the nurse from the RCA came by to check how I was doing.

He spotted that the wound was not only open but very wide and deep, he immediately said I would have to stay in bed fulltime for 2 to 3 weeks while the open wound healed.

At the time 2 to 3 weeks seemed an eternity and I was in shock after Ton had left, I started to cry and cried for a couple of hours.

Then I realised that I would be hurting both of us, Richie, as well as myself if I carried on crying too long.

Had the realisation that getting too submerged in crying could also jeopardise Richie, had a sudden intimation that too much crying could be harmful for us.

Could see that that it could kill us, it would certainly take us right down,

That was when I realised that despite being so handicapped and the pain and the frustrations of not being able to do anything for myself, I was nevertheless an important part of the team.

I also had something very precious and that is my relationship with Richie as well as our friends and the dogs and the ability to research and analyse and understand.

Really proud and pleased with myself that I got through the appointment so well today, Michelle did seem to be trying to tell me that she was taking it all seriously.

Her aim is to get the adaption done as quickly as possible; additionally she has suggested a change of Case Manager for me and a new review of my situation.

Apparently the Case Manager I have has been off sick for a long time and was just making a start to slowly return to work for a couple of hours a week.

This news was welcomed by both myself and Richie who hope that my new Case Manager will be able to give me the support that I need, that I did not obtain currently.

Think that I will take it very easy today, especially after the appointment this morning.



Anonymous said...

Oh Herrad....the injustice disgusts me...the way they disregarded know that I know first hand how that feels, although you got the brunt of their ignorance having been bedbound for a year...just terrible...I'm just so glad your appointment went well, the new case manager sounds very promising. How do you NOT cry...I do understand that you and Richie and the dogs are a "pack" so to speak, :-), but I imagine it very hard. I tip my hat to you! Hope your evening is going superbly! How is the weather in Amsterdam? I'm sweating the pounds away, lol!

Jen said...

Amazing how something as simple as faulty weight distribution can cause such serious repercussions.

Hoping for a speedy return to your improved chair, Herrad, and the ability to get out with Richie and breathe deeply the outside air.



Libby said...

oh, sheesh, herrad...doesnt it suck when you're finding such difficulty getting stuff you NEED?? [huge hugs] to both of you!

Herrad said...

Hi Rain,
It has been dreadful the way they have treated me.
I do cry quite often, that upsets poor Spike who rushes off right away to get me one of his toys.
Spike thinks everything is good when you are playing.
My evening was very pleasant, hope yours is/was too.
It's 12.30 hre wonder what time is it for you?

Hi Jen,
Shame they did not do the job properly last year.
I try not to deal on it as it is too depressing.
Really hope I will get outside soon.

Hi Libby,
It is very frustrating indeed,shame the people who deal with handcapped people are not all sensitive.

Thanks for coming by and leaving a comment.
This morning was very difficult for both of us to have a meeting with these two people who caused me to spend 1 year in bed.
Really difficult for us to be in the same room as them.
Hate being patronised and they do it everytime.
Keeping optimistic and hoping that this time the w/chair will be adapted properly.
Have a good evening and a great Saturday.

steve said...

During the whole process I was sitting next to them on the shower chair being put in the chair everytime they needed to check the changes.

I know that expression. You, know. The one that you made every time you were transferred into the chair to "check the changes." I build my life around avoiding that expression.

Webster said...

Hopefully everyone who is still involved will have learned from those errors and do a better job for you this time. You know it just HAS to be better this go 'round. I'll offer up a prayer that it does.

awb said...

Stinks that you are at their mercy, but I hope it all goes well and you are out in the park before too long! Have a great weekend.


Patrick @ Caregivingly Yours said...

Herrad! What a nightmare! Reading all this I consider us lucky that whenever Patti has been measured for her wheelchairs over the years she has been blessed by caring people with attention to detail.

I pray this all ends well.

Caregivingly Yours, Patrick

Amelia said...

Hi Herrad,
Well done for getting through the morning. How you can hold your tongue and keep your dignity, when these people have treated you SO badly, is amazing and a testiment to you as a person.
You are quite amazing.

I am dealing with a couple of pressure sores myself. I don't know how or why I got them, but it certainly gives me an insight into what you have had to go through this past year. I have had mine for the past 5 weeks. They are taking a long time to heal and that is very frustrating. Apparently, with MS, we take longer to heal anyway.
You know how much I respect both you and Richie, but when I read these posts on how you have been treated, it just adds another layer of respect.

I have just updated my blog and would love to hear from you both, I so appreciate your thoughts and support!

Thinking of you always,
Big hugs and lots of love to you, Richie and of course the dogs!

Herrad said...

hI Steve,
You got the expression very well.
I am amazed to hear from Richie, that I had mostly had a neutral expression on my face during on 10 am meeting..
Amazing as I felt anything but neutral.

Hi Webster,
I am hopeful that they have learned, think they will try to get it done well this time.
You are right it has to be better this time around.

Hi Andy,
It's been crap stuck here for a year because the w/chair was not adapted adequately for me.
Hope I can get out soon and get into the park with the dogs.

Hi Patrick,
Good to hear that Patti has had no problems with her w/chairs, good measurements are important and attention to detail.
The w/chair we bought is made to measure, the difference between the length of the seats is 10 cm's and 5 cm's in width.
Hope that this time they will get it right.

Hi Amelia,
I find it very difficult to get through those meetings.
Have to keep reminding myself of what Richie says which is ''it's only business''.
That is it, to us it is personal and to them it is just business.
Hope your sores heal soon.
Good to eat regular fish in your diet, especially oily fish like mackerel or herring.
Apparently a tin of sardines a week will do it too.
I like to do both.
Will visit yours after posting this.

Yesterday morning was not easy, difficult to feel good about the meeting.
Had to keep reminding myself what the goal was.
The two of them seemed to be saying that this would be done well and as quick as possible.
Just wish that they could stop patronizing us, they also keep walking round the wheelchair and 'kicking the hubcaps' to show off their expertise.
I just want to cut to the chase and am hopeful that they will too.
Not easy but I am optimistic this time the w/chair will be well set up.
After the adaptions have been done Jenny will be here measuring the pressure distribution and if that is good then I guess we are all set to start building up sitting in the chair.
On the balcony, then downstairs on Willes back porch liming with her and the neighbours.
Sounds like a good plan.
Have a great Saturday.

Anonymous said...

Oh my gosh....Winston is the same as Spike! As long as we're playing, there is nothing else that can be bad or sad or wrong or painful! When I'm feeling sad, he knows it. He walks up to me and just stares at me, and when I look his way he lowers his head a bit and starts to wag his tale...trying to provoke me to chase him....Aren't we lucky to have them???

Celeste Maia said...

Good morning Herrad, I hope you were able to have a good night. I was really disgusted to read the way the people behaved. How can they be so insentive and ignorant? I am hoping for a fast improvement of your chair so that you can enjoy going out with Richie and enjoy the sights. Hugs, Celeste

Herrad said...

Hi Rain,
We are very lucky to have our dogs, Spike keeps me entertained all day.
He always knows when Richie is not feeling ok and has to be by him cuddling and then a game.

Hi Celeste Maia,
I had a very good night thanks, it was very bad what happened.
Hope the w/chair will be done soon, say by end of the month so I can go and visit Willes and sit outside with her.

Thanks both of you dear people for visiting.
Have a good day.

Herrad said...
This comment has been removed by the author.