Founder, Sagesse Advocacy
This feeling of not being yourself is normal and applies to both patient and caregiver. Whenever we experience a significant change in our health, whether short or long term, there is often discomfort, fear, and confusion about what will happen next. There is disruption and challenge to the way things normally work.
Prepare for feeling unsettled and know that, with time and assistance, you can find new ways of managing and living with whatever challenges present themselves. Listen to the collective wisdom around serious illness which addresses challenges to one’s sense of autonomy, personal identity and how your family and the world respond to the changes you are experiencing.
Whenever we face significant change, grief around these challenges is likely to occur. Unexpected change can interfere with our hopes and dreams for the present and future. Again, this is normal, but not necessarily long lasting. Having people available you can trust, who understand the impact of serious illness is essential to your emotional and spiritual wellbeing. Your clinic based medical treatment team members should include a social worker (and sometimes a spiritual care provider) available to support you in the grief process. Sagesse can provide support and help you process both anticipatory and past grief events. There are also many support groups available in your community and may be categorized by your specific illness. Area Agency on Aging is a great resource for supportive services. Here’s their Dane County location.
This is an excellent time to examine what gives you meaning and purpose in your life and what matters most to you. What energizes you to get out of bed in the morning now? We all love that first cup of coffee, but to get dressed and move beyond the breakfast table, something must motivate us. In the past, our work and/or hobbies may have been the impetus whether it was cooking, gardening, fishing, golf, friends or family interactions.
Sometimes we experience disappointment, sadness, anger at self, God, or the world. Especially around the holidays where we have long held traditions. Sometimes taking another approach, where we consider new traditions or adaptations of the old, makes sense. Changing things up takes courage, willingness to be vulnerable, and creativity (or at least thinking beyond the norm.) Maybe instead of cooking your traditional Christmas dinner you ask others to bring their favorite holiday dishes. Or perhaps you initiate and lead a memory sharing event where you tell stories about your best Christmas ever.
My good friend, Rose Marie revived tradition at her Thanksgiving family gathering recently. She had just fallen a week before which left her unable to participate in her usual way. As the 89-year-old matriarch of the family, she requested that there be story telling time after the meal. Everyone gathered around and she talked about one of her first Thanksgivings where she and her family were stranded in a snowbank near Baraboo, WI, on the way to the big festive gathering. Her father had to rescue them in his horse drawn carriage—what a holiday to remember!
There are many ways to capture your story and any important messages you’d like to share with your family and friends. There are many Life Review platforms found on-line that you can use. One I recommend is StoryCorps. Another option is Dignity Therapy, a platform used only by a trained facilitator who leads you through nine thought-provoking questions resulting in a high-quality document. Contact Sagesse for more information. Whatever you choose to do, know that your wisdom and stories are an important part of your family’s history.
As you process the changes you’re experiencing, it’s helpful if you consider what’s most important to you and how you want to live out the rest of your life. Again, there are excellent online programs to guide you through this process.
At Sagesse, we can help you with this task by offering you templates and guidance to discern your values and wishes for the future that may inform your medical treatment and lifestyle choices.
Leaning into whatever helps you find strength and feel connected to something that is greater than yourself. This might be family, friends, a faith or social community, exercise, writing poetry, or whatever has given you meaning and purpose in the past and helps you feel that you’re not in this alone. Studies have shown that wherever you are in your journey with serious illness, spiritual support can help you hasten the sense of normalcy.
Courage isn’t only fighting your circumstances; sometimes making peace with your circumstances requires more courage. -Sonali Dev
We will look with greater detail at how serious illness disrupts and presents challenges to the way things normally work. Based on current research and personal experience, we’ll explore how this disruption affects our world including, the workings of your body, communication and relationships, your confidence level, and comprehending all the medical information around the illness.
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