Yuko suffers from ALS (amytrophic lateral sclerosis), a disease that gradually paralyzes the entire body.
Despite the devastating diagnoses, Yuko wishs to live a normal, active and happy life.
To make this possible, we need you: an affectionate, reliable person to "reinforce" our assistance-& care-team.
Yuko is 41 years young, origins from Japan and used to work as a flight attendant. She loves to laugh, travel, eat, cook, learn languages and to play chess.
By the way: She is the patient :-)
Chris is 40 years old, works as an engineer, does a lot of sport and is interested in aviation, travelling and nature.
He is the husband and the organizer of the most :-)
Our young, lovely and very easygoing team currently consists of 4 heartwarming girls: Michaela, Tanja, Yvonne and Jana (not on the picture :-( )
They keep the machine running and Yuko (and me) happy :-)
In 2017 it started with Yuko's fingers and legs suddenly moving differently than they should. In 2019, walking also became a bit more difficult and Yuko finally received the devastating diagnosis "ALS", including all the obligatory medical prophecies:
- You will die within 3 years!
- Make your testament & your powers of attorney!
- You need wheelchairs and a ventilator!
- Hire a 24h caregiver!
- And other not-so-uplifting instructions for action....
Well, the disease does what it does, but we don't surrender to fate so easily. Not every course of disease is the same, not every person is the same. After 5 years Yuko can still stand, speak and even walk a little.
Our obviously successful philosophy is different:
- Live a normal, SELF-determined life!
- Accept the disease, but do not give it much value!
- Eat healthy and take care of your body, mind & heart!
Different people have different approaches - no one is better or worse.
Our 4 key areas of focus are:
1. Self-determination
Care in a home is out of the question! We keep living in our beautiful appartment!
2. Self-determination
We select the nursing staff ourselves according to the criteria of sympathy and ability. A 24h-care agency is out of the question*!
3. Self-determination
Extent of care: "as little as possible, as much as necessary".
4. Self-determination
Chris continues to work in his full-time position without restriction!
That's why we decided in 2022 to organize the care ourselves and to hire staff ourselves as an employer. We now employ 5 young women on a part-time basis, which basically works wonderfully. They are great people who lovingly take care of Yuko - even friendships develop.
The other side of the coin, however, is that the administrative effort is very high and it is difficult for us to ensure seamless care due to inflation and the situation on the labor market.
If you google "care" you will be bombarded with 24-hour agencies that provide Eastern European workers at dubious conditions.
We spoke with about 20 agencies, of which we found not even 5 rudimentarily serious.
We just don't like this kind of talk: "Get a Polish woman", "If the first one doesn't fit, we'll exchange her" ... as if they were objects you can just import.
Besides, there are many stereotypical horror stories: Alcohol addiction, laziness, kleptomania....
Our vision is to combine the advantages of 24h care with the self-determination of self-organization.
We would like to provide 24/7 care in our home by
1. employing a full-time person in blockwork who is on site around the clock, i.e. "24h hours". Since 24h employment is not allowed in Germany for legal and insurance reasons, the daily working or standby time is up to 16h. The rest of the time is free time.
2. the remaining 8 hours are covered - as before - by additional staff.
Very simple: a loving, reliable person :-)
Accompanying Yuko all day, with everything that goes with it, e.g.:
- washing, dressing, toilet
- cooking, household, cleaning
- Driving to doctors, therapies, shopping
- Assistance with speaking
- help in general affairs: eating, drinking, combing, calling, writing...
"hard" care-activities (e.g. injections, ventilations) are not necessary (yet!) .
A nursery education/degree would be good, but is not "must" (yet).
You should be reliable, social, empathic, diligent, proactive, able to "think ahead", open minded and mentally flexible. A neat appearance is appreciated.
If so, you can be a newcomer, a student, even a refugee or any other person who wants to work & live in Germany.
You should not meet the stereotypes of agency-24h-workers [heavy drinkers, thiefs, lazy and so on :-) ]
You should speak and write German to assist Yuko with the voice and in writing.
If not, English (or Japanese) is also fine.
Communication must be possible!
You should have a drivers license to move a car <= 3,5 tons on European roads.
In Germany it is a class-B-drivers license.
Needless to say, that you should be in the physical condition to drive a car (no drugs or specific medications).
Block work, theoretically around the clock, but maximum 16h per day, according to German law.
Work can occur at all times of the day and night.
Work during the night and on Sundays/holidays is subsidized.
Maximum 16h per day, the rest of the time is rest time / free time.
The concrete workload depends on the concrete demand.
Everything else, especially how long the block services last, can be discussed personally.
We think the bundle is quite attractive...
We also take into account (wherever possible) the personal needs of the employee when designing the duty roster.
To be honest:
A large proportion of working time consists of resting, waiting and "being on standby". Isn't that a dream?!
The 24h-model is just one option. We are open and happy to any other suggestions.
Also parttime-jobs or Minijobs are appreciated.
...in case you need support in Germany with e.g. legal affairs, staying permission, university.
...according to the German law and regulations
Transparent salary: Every hour that is worked is also paid!
Update: Now a bit more in detail, simply because there were a lot of questions about this ;-)
- Basically it is 14,07€ per hour (rate of the office). In case of special skills, I am willing to top up privately to 15€/hour.
- You & we know the rules of the Working Hours Act (ArbzG): In the half-year average it may not be more than 8h / day. Further rules apply.
- Consequently, 10, 12, 16 and even 24-hour (paid) shifts are possible in block work. Why not? Afterwards, the statutory rest period must be observed. The ArbzG does not regulate how this is paid...
- Here it is up to us, together with the employee, to set up a model that suits both sides and complies with the legal regulations.
- Once again: We are not an agency whose aim is to exploit the worker in order to maximise our own profit!
- However, since we are not only looking for block services, but also for other types of work, we cannot of course say in general how much will be paid per day. But you can see that depending on the model, >200€/day is quite possible.
As you can see below, we live in very beautiful area of Germany and our appartment is also "not bad".
We have a private room for personal with bed, TV and wardrobe.
Meals (at least those you cook for Yuko :-) ) are inclusive, bathroom as well.
The athmosphere in our house is very relaxed and we try hard to preserve an easy-going atmosphere (<-- this does not mean, that you can be lazy ;-) )
We live in the absolutely pituresque Mosel-region in the very West of Germany, close to Trier and Luxembourg.
Other people pay a lot of money to make holiday here :-)
We live in a beautiful and spacious (160m²) appartment in the first floor (we have a lift...) with 2 balconies, a scenic view on the nature and 7 rooms (incl. 2 bathrooms).
One room would be for you!
We have a private room with a bed, tv and a wardrobe for our carers to rest.
We bought and modified a Ford-Bus to transport Yuko sitting in her wheelchair safely.
A class-B driving licence is required!
Please send us an email to:
Feel free to ask any questions or to submit us your application.
Please make sure with your application that we get a CV (in German, English or Japanese, with picture) and a cover letter which expresses your motivation!
(<-- desperation or the expectation to earn money while sleeping won't be accepted :-) )
After that, we can have a call, a VTC or a meeting to discuss details and to know each other better!
Thanks for reading down to here!
Yuko & Christoph
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive neurodegenerative disorder that primarily affects the nerve cells responsible for controlling voluntary muscles. These nerve cells are called motor neurons, and they are responsible for transmitting signals from the brain to the muscles, allowing for movements such as walking, talking, and breathing.
In ALS, the motor neurons gradually degenerate and die, leading to a progressive loss of muscle control and function. As the disease progresses, individuals with ALS may experience muscle weakness, twitching (fasciculations), stiffness, and eventually, paralysis. This can lead to difficulties with speaking, swallowing, breathing, and performing daily activities.
The exact cause of ALS is not fully understood, but a combination of genetic and environmental factors is believed to play a role in its development. The majority of ALS cases are sporadic, meaning they occur without a clear family history. However, some cases are inherited, with specific genetic mutations being associated with the disease.
Currently, there is no cure for ALS, but various treatments and therapies are available to help manage its symptoms and improve the quality of life for individuals with the disease. These treatments may include medications to manage symptoms like muscle cramps and excessive saliva production, physical and occupational therapy to maintain mobility and independence, and assistive devices to aid in communication and daily activities. Additionally, research into the underlying mechanisms of ALS is ongoing, with the hope of discovering new therapies and insights into the disease.
https://en.wikipedia.org/wiki/ALS
https://lesturnerals.org/als-activities-of-daily-living-guide/
Source image: Getty Images