Is an Illness Making You Feel Like You’re Not Yourself?
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.
What Can We Do About This?
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.
Know That Grief May Arise
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.
How to Put the Pieces Back Together Again
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.
What Happens When We Can’t Fully Participate in These?
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.
Here’s an Example of Recreating Tradition
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!
Life Review and Legacy Work
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.
To Help Reassemble, Look at What Matters Most to You
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.
Good Psycho-Social-Spiritual Support
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.
Remember You Are Not Your Illness Even Though It May Feel All-Encompassing at Times
Courage isn’t only fighting your circumstances; sometimes making peace with your circumstances requires more courage. -Sonali Dev
Next Month
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.
Pain management is a crucial part of palliative care, and finding effective strategies to manage your pain at home can greatly improve your quality of life. From medication to lifestyle changes, here are some tips and strategies for managing pain at home as a palliative care patient.
Palliative care is a specialized type of medical care that aims to improve the quality of life for patients with life-limiting illnesses. One of the most common symptoms that palliative care patients experience is pain. Pain can be caused by a variety of factors, including the illness itself, medical treatments, and other complications. Pain management is a crucial part of palliative care, and finding effective strategies to manage your pain at home can greatly improve your quality of life.
If you are a palliative care patient experiencing pain, it is important to work closely with your healthcare team to develop a pain management plan that works for you. This may include medication, physical therapy, counseling, and other interventions. In addition to these medical interventions, there are many other tips and strategies you can use to manage your pain at home. Here are some examples:
1. Stay on top of your medication schedule.
If your healthcare team has prescribed medication to help manage your pain, it is important to take it exactly as directed. Set reminders for yourself if you need to, and make sure you have a system in place for tracking your medication use. If you are experiencing side effects from your medication or if it does not seem to be working as well as it should, be sure to talk to your healthcare team about adjusting your dosage or trying a different medication.
2. Try non-medication pain relief methods.
In addition to medication, there are many other non-medication methods you can use to manage your pain. For example, heat therapy (using a heating pad or warm bath) or cold therapy (using an ice pack) can help reduce pain and inflammation. Gentle exercise, such as stretching or walking, can also be beneficial for pain management. Other methods, such as massage, acupuncture, or mindfulness meditation, may also be helpful for some patients.
3. Make adjustments to your living environment.
Simple adjustments to your living environment can help reduce pain and make it easier for you to manage your daily activities. For example, if you have difficulty getting in and out of bed, you may want to invest in a bed rail or a lift system. If you have trouble sitting for long periods of time, consider using a special cushion or chair that provides additional support. If you have trouble reaching items, consider using a reaching tool or having items within easy reach.
4. Practice good sleep hygiene.
Getting enough restorative sleep is important for pain management and overall well-being. Make sure you are following good sleep hygiene practices, such as sticking to a regular sleep schedule, avoiding caffeine and alcohol before bedtime, and creating a comfortable sleep environment. If you are having trouble sleeping due to pain, talk to your healthcare team about strategies for managing this.
5. Stay connected with loved ones.
Social support is an important part of palliative care and can help reduce feelings of isolation and depression. Make sure you stay connected with loved ones, whether through phone calls, video chats, or in-person visits (when possible). You may also want to consider joining a support group for palliative care patients or connecting with other patients through online forums or social media.
6. Consider complementary therapies.
There are many complementary therapies that may be helpful for managing pain and improving quality of life. These therapies, such as aromatherapy or music therapy, are often used in conjunction with traditional medical treatments. Talk to your healthcare team about whether these therapies may be appropriate for you.
7. Take care of your emotional well-being.
Managing pain can be emotionally taxing, and it is important to take care of your emotional well-being as well as your physical health. Consider seeing a therapist or counselor who specializes in palliative care, or join a support group for patients and caregivers. Other strategies, such as journaling, practicing gratitude
Wrapping it up
Managing pain at home is an essential part of palliative care for those with life-limiting illnesses. Effective pain management strategies not only reduce discomfort and improve quality of life, but they also allow patients to maintain their independence and dignity. By working with their healthcare team and implementing the tips and strategies outlined in this article, palliative care patients can better manage their pain and live as comfortably and fully as possible during their journey.