Caring for someone with dementia at home - a mammoth task for relatives
The reasons for becoming dependent on care are varied. Often, several causes exist simultaneously. However, the Robert Koch Institute states that dementia is the most common reason for requiring care. It is estimated that two-thirds of people with dementia are cared for at home. Most of them are cared for by family caregivers alone, without the support of a nursing service.
"My husband built our house almost single-handedly. Today, he can't even hammer a nail into a wall." Anyone who cares for relatives with dementia knows: everyday life can quickly spiral out of control. Little by little, your loved one becomes less and less themselves. Less and less the person you once knew so well. Suddenly, you can no longer make arrangements with them or delegate important tasks to them. People with dementia have only limited learning capacity. Their impaired memory means they forget most things within minutes. Especially in the early stages of the disease, those affected are unsettled because they themselves notice that many things no longer work the way they used to. And even a dementia patient who requires intensive care feels that they are a burden to others.
People with dementia need much more time for everything: speaking, eating, dressing, and personal hygiene. They often feel misunderstood when they are held responsible for things they have long since forgotten. All of these factors can seriously test the patience of caregivers.
It's important to continually put yourself in the shoes of your family member with dementia in order to understand their reactions. Imagine being abandoned in the middle of Tokyo and having to find your hotel room without speaking a single word of Japanese. Everyone around you is constantly talking about things you don't understand, giving you strange looks, or walking away in annoyance. This is what the person in need of care experiences every day. And those who constantly feel misunderstood will eventually become angry. If their loved ones react with incomprehension or impatience, this triggers further anger, confusion, or aggression.
Unlike a professional caregiver, you lack the protective emotional distance from your dementia-suffering relative. For you, caring isn't a job with regular breaks and rest periods. For you, caring is a 24-hour job that still needs to be balanced with your own work and personal life.
Caring for someone with dementia isn't just about helping with household chores, supporting them with physical limitations, and preparing meals. The emotional strain associated with caring for a relative with dementia is often underestimated. Researchers have found that people caring for a relative with dementia struggle with stress and depression much more than other caregivers.
What is often perceived as particularly stressful is that the patient's high level of support requires so much support that their own free time is severely restricted. The fact that they are suddenly no longer able to communicate with a trusted person on an equal level and that rational arguments are not understood can lead to great despair. Added to this is the further stress that comes with being a caregiver. Dementia often leaves patients disoriented and overwhelmed even with normally familiar everyday activities. They can no longer remember whether they washed that morning and sometimes no longer know how to use the toilet properly or where the toilet even is. Family members with dementia may refuse to shower or smear their stools around the room. And suddenly they feel disgusted with their own loved one.
It drives me crazy - keeping calm as a caregiver
Being angry, aggressive, or disgusted towards someone in need of care often leaves you feeling extremely ashamed. You know that they aren't being clumsy on purpose, that they didn't deliberately use the trash can as a toilet again, and that they didn't deliberately fall when you were about to go to the gym. Nevertheless, constantly going without your own needs met and feeling like everything is getting on top of you can sometimes lead to unpleasant feelings. And then suddenly a situation escalates out of control, you find it difficult to control yourself, and you feel like you're about to explode. Anger isn't an emotion you should feel guilty about. It's a signal that something isn't going the way you want it to. A signal that you should change something, that you need a break.
It's perfectly normal and okay for caregivers to feel angry or annoyed at times. Alzheimer's is exhausting. But it doesn't help to direct your anger at the patient.
For such a moment, you should have your own personal emergency tricks ready. You can quietly step out of the room for a few minutes, take deep breaths, drink a glass of water or tea, and say a calming phrase out loud to yourself.
Various mindfulness methods derived from Buddhism can also help you as a caregiver regain composure within minutes. For example: First, take a deep breath. Look into a corner of the room and name five things you see there. Then concentrate on your hearing and name five things you hear. Next, concentrate on sensations in your body, such as the feel of shoes on your feet, a draft of air on the back of your neck, or a tingling sensation in your leg. With each breath, name one of these observations. This allows you to gain distance from the situation and concentrate on neutral surroundings. Create your own emergency kit containing tricks for acute situations in which you are in danger of losing control. Take your time to experiment and find out which breathing exercises or movements help you quickly calm down.