The family is like a team
Unknown, age: 36
Who do you take care of? For how long?
I take care of my father for 5 years.
Tell me a little bit about yourself: how your days unfold, how care work coincides with your other life activities such as work, family and your passions?
Care must be provided around the clock. It starts with preparing breakfast and ends with going to bed. I have to make sure that my father eats properly. For example, my father forgets if and when he has eaten. My father can no longer clearly perceive and assign physical needs such as hunger and cold sensations. My father therefore needs a lot of support with all everyday activities. This includes getting dressed properly and washing dirty clothes. My father is also no longer able to organize his daily routine himself.
He is dependent on help. We try to integrate interesting activities into his daily routine, such as going for a walk. But it’s usually difficult to reconcile this with our jobs. Time tends to be tight during the week. I work from home a lot to be present, as my father can’t be alone for long periods of time. This is a major restriction for me and has me sitting on the fence. You try to do your job properly, but you also want to be there for your father. So there’s often not much time left for hobbies.
What are the main difficulties you encounter?
The biggest challenge is not getting lost in caregiving. It’s easy to neglect your own needs. Caregiving takes up a lot of space and time. It’s not a job that you only do for one or two hours; my father needs round-the-clock care. It’s difficult to reconcile work and caregiving responsibilities. Also there is little state aid. You struggle with the authorities and don’t get much support from the state. You often have the feeling that the state is working against you and not with you. It’s difficult to get the much needed support. I have received the most support from the Alzheimer’s society.
There is also hardly any support for the person with dementia. My father was diagnosed at a young age and therefore doesn’t fit into the classic scheme. There is hardly any support available. A big challenge is often remaining calm. You have to explain a lot of things over and over again, as my father can’t remember anything well. You have to take your time, which you often don’t have. And of course it’s difficult to repeat things over and over again. It’s also difficult to deal with the change in my father’s personality.
How do you try to deal with them?
I take turns with my mother and my brother in caregiving. We try to find a solution together. We are only handling the situation because we are working together as a family. Working from home also helps, as you can be present, but this is certainly not compatible with every job. It helps me a lot to talk to other informal caregivers, as they understand the situation best.
Do you feel discriminated against or prejudiced as a carer? If so, how do they make you feel?
I often have the impression that there is hardly any understanding in society. The term Alzheimer’s or dementia means something to most people, but they don’t really know what it means. I quickly realized this in conversations with friends. They can’t imagine everyday life and the challenges. They often think it’s just forgetfulness, but they don’t see what’s behind it. It can also lead to unpleasant situations at sports clubs or in restaurants or in public spaces in general. In our society, we often have to do things very quickly. One example is the supermarket.
You have to pack your shopping quickly and pay for it. However, my father found this increasingly difficult. He had to concentrate a lot and needed help, but there was usually no understanding for that. Eating in a restaurant with a fork and knife has become difficult and he can’t read the menu anymore. The family has to step in, but it would be nice if there was a little more understanding and time for those affected. But there are also positive examples. In smaller stores in particular, the sales clerks are very patient with my father and take the time to explain things. You really appreciate that.
Is there anything you would like people who are not caregivers to know?
I would like to see more understanding for the challenges faced by informal caregivers.