Today we had an appointment with someone from the local department of the WMO (Wet maatschappelijke ondersteuning) who arrange home and mobility assistance for disabled people.
It was extremely informative, and should be somewhat helpful. Some things they won't help with - they don't do stair lifts anymore, and people are expected to move to a flat if they can't go upstairs (there are almost no one-story houses in the Netherlands).
They also won't give us any household cleaning help - basically if there is anyone remotely able-bodied in the household then they are expected to do all of it, even if it means they have to go from full-time employment to part-time to do it. We'd heard the same from other people (somewhat elderly, and not ME patients), so were sorta expecting that. She mentioned that there are students and such who will clean for 12 euros per hour, versus 20+ euros from proper companies. We probably will have to hire someone - we need a good scrub down at least once a month, though it sounds like the fiance is thinking more along the lines of "weekly" - he's quite fed up with it all!
Regarding my showering problems, aside from GETTING to the shower, which is the biggest problem
, she said we can borrow a proper shower chair for 6 months from the city. She also suggested we get a grab bar to install from the local hardware store - apparently they won't fund that or install it.
It sounded like she was in full agreement about me needing a car-friendly wheelchair, so that will be great. She also gave us the form and info for applying for a disabled parking permit, and we can also ask for a dedicated parking space in front of the house. That's done via a different department, and it will require another assessment from an uninvolved doctor which we probably have to pay for.
She also gave us info on a taxi service for disabled people to get to the hospital and such for appointments, as well as mentioning that a local volunteer agency will accompany disabled people on those appointments, which would be quite helpful for me when I go for IV antibiotics several times per week. Socializing with volunteers was also offered, but is something I can't really handle - too exhausting! But maybe in the future, if I'm doing a bit better. The volunteering is done by the same agency which found a volunteer position for me back when I was in better shape
She also gave us some info on a couple local companies which deliver cooked meals to the elderly and disabled, either hot or frozen. With my various food intolerances, that might be a bit tricky, but I did see at least a dozen items which are gluten-, egg-, dairy-, and broccoli-free. Though I'd still have to email them to make sure there's no soy or MSG in any form in the sauces or processed meats. We might try making our own frozen meals as well, though we really need to clean out the freezer first Usually I can cook very easy meals (pre-chopped veggies & meat, inna pan with coconut milk and spices, and rice), but we end up ordering out several times per week when I'm bedbound, and that's just too expensive.
So even though we won't get the things which we need the most (stair lift or cleaning help), the meeting was very helpful, and the woman was very understanding and sympathetic about my disability. She did ask a lot of questions about my diagnoses and main symptoms, limitations, etc. I'm a bit disappointed about not getting more help, but at least now we know what we have to figure out how to do ourselves, and how to go about it.
It was extremely informative, and should be somewhat helpful. Some things they won't help with - they don't do stair lifts anymore, and people are expected to move to a flat if they can't go upstairs (there are almost no one-story houses in the Netherlands).
They also won't give us any household cleaning help - basically if there is anyone remotely able-bodied in the household then they are expected to do all of it, even if it means they have to go from full-time employment to part-time to do it. We'd heard the same from other people (somewhat elderly, and not ME patients), so were sorta expecting that. She mentioned that there are students and such who will clean for 12 euros per hour, versus 20+ euros from proper companies. We probably will have to hire someone - we need a good scrub down at least once a month, though it sounds like the fiance is thinking more along the lines of "weekly" - he's quite fed up with it all!
Regarding my showering problems, aside from GETTING to the shower, which is the biggest problem
, she said we can borrow a proper shower chair for 6 months from the city. She also suggested we get a grab bar to install from the local hardware store - apparently they won't fund that or install it.It sounded like she was in full agreement about me needing a car-friendly wheelchair, so that will be great. She also gave us the form and info for applying for a disabled parking permit, and we can also ask for a dedicated parking space in front of the house. That's done via a different department, and it will require another assessment from an uninvolved doctor which we probably have to pay for.
She also gave us info on a taxi service for disabled people to get to the hospital and such for appointments, as well as mentioning that a local volunteer agency will accompany disabled people on those appointments, which would be quite helpful for me when I go for IV antibiotics several times per week. Socializing with volunteers was also offered, but is something I can't really handle - too exhausting! But maybe in the future, if I'm doing a bit better. The volunteering is done by the same agency which found a volunteer position for me back when I was in better shape
She also gave us some info on a couple local companies which deliver cooked meals to the elderly and disabled, either hot or frozen. With my various food intolerances, that might be a bit tricky, but I did see at least a dozen items which are gluten-, egg-, dairy-, and broccoli-free. Though I'd still have to email them to make sure there's no soy or MSG in any form in the sauces or processed meats. We might try making our own frozen meals as well, though we really need to clean out the freezer first
Usually I can cook very easy meals (pre-chopped veggies & meat, inna pan with coconut milk and spices, and rice), but we end up ordering out several times per week when I'm bedbound, and that's just too expensive.So even though we won't get the things which we need the most (stair lift or cleaning help), the meeting was very helpful, and the woman was very understanding and sympathetic about my disability. She did ask a lot of questions about my diagnoses and main symptoms, limitations, etc. I'm a bit disappointed about not getting more help, but at least now we know what we have to figure out how to do ourselves, and how to go about it.