By Eileen Silverberg
Loving and caring for someone with dementia can be challenging. Perhaps, it is one of the most challenging struggles one will ever encounter. No one can predict if or when their loved one, especially a parent, will be diagnosed with dementia. But, in a blink of an eye, it happens. Without much warning, our world gets turned upside down. The responsibilities ahead are new and different, which makes the experience much more difficult. Not knowing what we are getting into creates fear within us and causes us to worry about the future. We start worrying, not only for ourselves but for our loved ones, too. Doubting whether or not we are “good caregivers” is something that can destroy our self-esteem.
There is an incredible amount of questions that bombard our minds daily. It is haunting not knowing how much longer we will be caring for our loved one. We get filled with uncertainties like wondering where, when, and how are the best ways to help. These uncertainties are accompanied by feelings of guilt for losing our temper and/or wishing it all come to an end. Caring for someone with dementia is exhausting and complicated. Often, we feel overwhelmed by a feeling of exasperation when our loved one insists on not showering or insists on continuing to drive, or by blaming us for their struggles.
It may feel difficult or cruel when we repeatedly correct our loved one’s behavior or try to convince them of something. At the same time we realize how our relationships with others start slipping away. Suddenly we get reminded as if we’ve just received an app reminder notification, that we have stopped devoting time to the things we love and enjoy. The feelings of frustration and depression associated with caring for our loved ones with dementia are undeniable. Undoubtedly, it does not make sense at the beginning. However, to help improve our loved ones with dementia, we must better ourselves first.
Even when it feels inconceivable, we, caregivers, do the best we can under extremely challenging situations. Doing our best requires constant curiosity and the commitment to embrace the habit of keeping our minds open. How often do we beat ourselves up? Criticism comes in three different kinds of ways. Destructive criticism, constructive criticism, and the one caregivers tend to identify with the most, Self Criticism.
In considering a better, more nurturing way to talk to ourselves, changing the voice to one of a cheerleader, or parent who thinks we are the best thing in the face of the earth, can improve how we view ourselves. The best way to stop ourselves from being our own worst critic is by not doubting whether we are “good enough.”
Napoleon once said “The person who never makes a mistake will never make anything.” Certainly, as caregivers to a loved one suffering from dementia, we will make many mistakes. Making mistakes is the way we enhance the quality of who we are and how we care. By beating ourselves up, we not only make our life more difficult but the life of our loved ones, too. Therefore, we must have a positive outlook to maintain our loved one as calm and happy as possible.
To improve ourselves and our loved ones, we must discern some key and elemental things about the disease. By committing to understanding why our loved ones seem to purposefully want to disagree and contend with us, we can improve our negative self-talk. Understanding why they act the way they do will comfort us. Feeling drained by the situation is not healthy for anyone, instead, try to develop feelings and thoughts of willingness to make positive changes.
Understanding the process of why they treat others better than us has the power to reframe our thoughts.
Our loved ones are not in denial, nor are they being stubborn – they have a “lack of awareness or lack of insight.” This state is called anosognosia. “Anosognosia refers to a person’s lack of awareness of their own motor, visual, or cognitive deficits.” Since they are not capable of being aware of their brain problem, they see us as the enemy who is getting in their way from doing what they want, instead of seeing us as the person who is helping them. When we decide to understand what is happening with the disease process, then we will understand that we must retire the term ‘’good caregiver” and replace it for “doing the best job we can.”
Communication is the key to relationship
First off, do not highlight their weaknesses. Our loved ones with dementia are not capable of stepping back to look at any factors from a clear perspective. Also, laying off arguing, correcting, or reasoning with our loved ones with dementia can allow us to start a new way of communicating and relating with them. Keeping in mind that happiness is linked to how others treat us can help us keep the peace. Learning to communicate in a new way with your loved ones and ourselves will give us a new sense of compassion and will allow the situation to improve.
The Key to a better relationship
Before correcting our loved ones, let’s remember to take a step back and ask ourselves if we can avoid making our loved ones feel bad. Is it necessary to correct them? More than likely, it is better to save that energy and put it towards something more important. Let’s ask ourselves, is it kinder to just agree with them to not cause them any more anxiety, worry, or pain? Agreeing or
lying to your loved one for their mental benefit is a form of compassion. Understanding what they want relieves pain and heartache from our loved one.
Our caregiving journey will have many hardships along the way. It is up to us to decide which struggles are best to leave alone. At the end of the day, there is no need to correct or challenge them, as long as their safety is not at risk. No one likes to be reminded of what we can’t do, right? Aiming towards behaviors that can alleviate our loved one’s anxiety, sadness, and anger will teach us a lot about them, and in turn, make it easier for us to understand their needs and desires. When we communicate intending to relieve their anxiety, instead of correcting them, we realize we are good caregivers. Certainly, we are doing the best we can under extreme circumstances. Reframing and rewiring our self-talk, the unempowering questions, and the desire to correct is the beginning of appreciating the great job we do.
Eileen Silverberg, is author of the new book on empowering caregivers, called A Warrior of Light. Eileen is also the caregiver to her mother, who has Alzheimer’s, and a life coach who specializes in emotional management and meditation.