The importance of carving out personal space
Unknown, age: 61
Who do you take care of? For how long?
I look after my wife, who was diagnosed with dementia a year ago. She was 59 years old at the time, so she is one of the younger people with dementia.
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?
I’m still working and have five years left until retirement, although I’ll be entering the passive phase of partial retirement in two years’ time. I consider this to be very fortunate, as I will then have more time to look after my wife and other daily tasks.
I get up very early in the morning and the caregiving starts straight away. This means that I lay out my wife’s medication for the day before I go to work. My wife can manage on her own for the most part during the day if I prepare everything for her. If there are any problems, for example if she spills her pills, she calls me at work. That works very well. I also call her to remind her of her therapy appointments. We are in contact a lot during my working day. Fortunately, I have an understanding boss and a job that allows this.
After work, on my way home, I start planning the rest of the day. What needs to be done? Do I need to go shopping? At home I have to prepare the meals because my wife cannot handle the stove anymore. Although she is having more and more problems with all electrical devices, it is very important to my wife to continue helping out in the household. She simply uses the broom instead of the vacuum cleaner. However, I have to check afterwards that everything has worked. If something goes wrong, we can sometimes laugh about it together. I try to remain calm.
On the other hand, these situations also scare me because they make me realize how quickly her dementia progresses. I try to let her be as independent as possible, but I notice that she needs more and more time for everyday tasks. Fortunately, I have the support of a very good friend who looks after my wife several times a week in the afternoons so that I can get things done or simply have time for myself. I enjoy working in our allotment garden.
What are the main difficulties you encounter?
New and unknown situations are a big challenge, not only for my wife but also for me. It makes me nervous when I can’t foresee how to behave best. Always listening to the same stories is also a challenge for me. I find it difficult to stay calm and balanced. Sometimes I regret my reactions. Then I quickly get caught up in the carousel of thoughts again and wonder what our future will look like. I’m retiring soon, but I don’t dare make any plans because everything is so uncertain.
How do you try to deal with them?
I get a lot of help and support from the Alzheimer’s Society, my support group and seminars. Gaining distance also helps me a lot. I often manage to do this at work as long as my cell phone isn’t ringing. When I’m not looking after my wife, I consciously take time for myself and things that I like to do. For example, I still regularly go on vacation alone. I enjoyed doing that even before her illness.
Do you feel discriminated against or prejudiced as a carer? If so, how do they make you feel?
I haven’t experienced any discrimination yet. It helps that we are very open about her condition. That was a joint decision. As a result, I experience a lot of understanding and compassion from those around me. That gives me the energy to concentrate on the essentials. It also gives me security when I know that the neighbors are aware of our situation and are keeping an eye on my wife. I would recommend open communication to anyone in a similar situation. Playing hide-and-seek only leads to people getting caught up in excuses and lies. It unnecessarily drains energy from you.
Is there anything you would like people who are not caregivers to know?
Everyone should realize that it can happen to anyone. Don’t wait for your retirement, use the time before it.