Along The Journey
The question “How are you?” that we get from others is maddening. The answer depends on the day, the time, even this second. It can change just like that. But people on the outside are not as aware of the constant mental battles we struggle with, and we may not know how to answer when they ask. Or, it’s too overwhelming of a question because I already have a lot on my mind. Unless they themselves have been caregivers and walked in our shoes, they see us merely as kind and devoted to take care of our loved one. And possibly, looking kind of tired and in need of a shower. They do not usually see the emotional toll it takes on us, and that toll is constantly changing. What was working last week doesn’t work at all this week. We need people to meet us where we are at. The better question is, “How are you right now?” And then listen. Don’t give solutions, just listen.
Caregiving can be broken down into roughly six stages along your journey. The stages can last long or be brief, and are as unique as the caree. To help you understand the stages caregivers can go through, let’s examine a summary of each one. Denise Brown, founder of the Caregiving Years Academy, has created this information and you can find in depth knowledge of the Six Stages if you wish to read more listed below.
With the first stage of caregiving, you may gradually already be helping someone now and then, and you foresee the needs increasing soon. Or, a family member is hit with a sudden unexpected illness or accident, and now it’s up to you to care for this person. Where do you start? The questions you have can be overwhelming and difficult to sort through. What nagging concerns or worries do you have? What is the reality of the situation, and are you prepared to take on the needs of another? Caring for someone does not always mean you are the one providing personal care. It may mean you do your best in hiring or finding outside resources to help. Discussing the options and your concerns openly with everyone involved or with someone you can bounce thoughts off of or seek non-judgmental advise from is a good place to start.
In the second stage, we find ourselves fully involved and new to all the aspects of care: the medical world, doctors, hospitals, and navigating what services are available, while trying to educate ourselves on the disease and diagnosis and learning how to cope with the stress and worry. And how we juggle our own life and family at home as you see the care needs progress and unfold clearer. Now is a good time to be honest and ask yourself what level of care you are comfortable and willing to giving. Some people may be fine up to the point where bathing or incontinent care is needed. Others may draw the line at outbursts. Never stay in a place where the level of needs puts you, your caree or other people in the house at risk of harm. You may want to find and experiment with different services that could help prepare you for the future and provide respite care.
During stage three, you are now fully feeling and living the impact of constant caregiving. You understand the dynamics and may feel overwhelmed or life as you knew is a distant memory. It’s important to set your boundaries. Knowing your limits can help you gain clarity and receive regular breaks for yourself. It is normal to feel anger, frustration, or disappointment over the loss and how your life or your caree’s life is unfolding. How can you build and maintain a regular support system? It may sound like just more work, but many studies show that people who do well mentally and physically during caregiving are the ones who have made themselves a priority and continue to spend time with family, friends, or hobbies. Yes, it takes planning, and it isn’t like it used to be, but you can allow time to enjoy a routine that includes time for you. It is not selfish.
In stage four, we start to have thoughts about our own future, and we may feel guilty for having these thoughts. It may mean your caree is transitioning and moving out of the home and into a skilled facility, or at the end of their journey. We get wrapped up in the things that must be done for their care. Have you slowed down to see what things do you or could do to enjoy spending time with them? Have you resolved any painful issues or learned things about their life that you will wish you had? This time is for you to gain understanding of yourself and your caree. It can be a bittersweet, beautiful space.
Stage five. Take a deep breath, now may be a time you ask yourself: what do you struggle to stop? What things are hard to say yes to, and what do those things mean to you? Having honest conversations about the wishes of your loved one is difficult. Learn how they want to be remembered. What does your caree wish for you? What will help you heal? Spend time together and prepare to make the best of these moments into memories.
Exhale into the sixth stage. Now it’s you. It’s your turn to reflect on your memories, to allow the shock of everything that you went through, to grieve, to create opportunities for yourself, or to share with others. It’s time to learn who you are again and what you want. Go at your own speed. Be kind to yourself. Everyone is different in their journey.
