After running an errand today, I realized that, due to my personal experiences, I have learnt the ins and outs of supporting those unfortunate enough to be coping with chronic illness.

This afternoon, you see, I took lunch over to my mom’s house. On the table that holds her vintage Singer sewing machine I noticed a picture. It is a photograph of my family on my grandfather’s eighty-ninth birthday. At that time, none of us thought about chronic illness or disease.  Everyone is wearing party hats and we have our arms wrapped around each other. I remember this as a happy day. Today, I feel sadness as I look at each familiar, smiling face in the picture. 

Since that photograph was taken my grandfather and my father have passed away. My father passed away from Alzheimer’s disease. My grandmother was diagnosed two years ago with Chronic Obstructive Pulmonary Disease. Both my mom and uncle have been diagnosed with Parkinson’s disease. The past five years have taken quite a toll on my family. My aunt, stepdad, and I have become caregivers to our loved ones who suffer from chronic disease.

Helping Those Coping With Chronic Illness

In recent years, there have been less of those smiling family photographs. Some family members, unable to handle our loved ones’ diagnoses, have withdrawn themselves from family gatherings. When asked why, they say “it’s too depressing”. The rest of us have been trying to help, picking up the pieces for the past few years. Through this, I have learned that there are different ways to help a loved one who is chronically ill. Their needs may change, as their illness progresses, but some things remain the same.

Just Listen To Those Coping With Chronic Illness

One of the most important ways you can help a loved one who is chronically ill is by being present. When my dad was on Hospice Care, he may not have remembered me, but I remembered him. I held his hand, read books, and played his favorite music. Somedays he would smile and say, “This is love!”. Remember that your presence can brighten someone’s day! When I took my Mom lunch today, I said “let’s bring her some sunshine!”. Our time, our presence is the best gift we can give.

Simply listening to someone can have a big impact on their day and overall well-being. During a family dinner, my uncle was carrying plates into the kitchen for me. I looked at him and said, “Thank you so much for all of your help. I appreciate it”. He replied, “Thank you for making me feel like I still have some value left”. We do not know how someone else is feeling unless we are willing to listen to them. Whether it be a bad day or a good day, approach each conversation with an ear ready to listen.

When we listen we are allowing the speaker to communicate their feelings. This lets us know if that person is happy, frustrated, depressed, sick, or sad. We are able to understand each other more clearly through positive, effective communication. We all need someone to talk with during times of joy and times of sorrow. So, when you listen make sure to pay attention, be non-judgmental, and provide feedback. It makes a world of difference when we feel like our voice has been heard.

Research

coping with chronic illness

After each family member was diagnosed with their different chronic illnesses, I took time to research and learn about their conditions. I could not change their diagnoses, but I could be informed. Remember that with knowledge comes power. I learned the different stages of their respective ailments. By staying informed, I was able to recognize progressions in both my mom and my dad. Through understanding, I empowered myself and became a more effective caregiver.

Three months ago Mom started to wheeze and experienced severe swelling in her feet. Through my understanding, I knew that this could be a progression of her chronic disease. One night, my stepdad called me. My mom was having a hard time breathing.  I went to her house and helped her get ready for the hospital. My mon whispered, “I am not doing well”. I said, “I know. I have known for a while”. In learning about Parkinson’s disease, I was better equipped to handle the progression of her disease.

At the hospital, my stepdad and I were told that my mom’s Parkinson’s has reached one of the later stages. As she progresses, I am still learning how to best help her. The needs of the person you are caring for will change. Learning about these changes will help you to be a better caregiver. I even have had physical, occupational, and speech therapists show me different exercises I can do with her. As a caregiver, I am constantly learning new ways in which I can help.

Ask Questions

Listening, understanding, and being supportive are great ways to help someone who is coping with chronic illness. Ask your loved one how you can best help them. This afternoon I was helping my mom. Her feet froze, on the spot, and her legs were shaky. I asked, “What is the best way to help you right now?”

My mom was able to tell me how I could move her feet. Some of her needs have changed. She needs more physical help right now. Her need for love, understanding, and patience will never change.

People Coping With Chronic Illness Are Still Valuable

Each of us loses sight of our own self-worth at times. It is important to remind people of their value. My mom describes Parkinson’s as a thief. I remind her that hearing her laugh, seeing her smile, and talking to her can brighten my day. As much sunshine as I try to bring her, she gives me that sunshine right back. Reminding someone of their value; what is special about them; what you love about them can be an amazing way to inspire someone who is feeling ill.

coping with chronic illness

Lessons From A Caregiver

I have been a caregiver for the past nineteen years. Before I stopped working to take care of my parents, I worked in home health care. I have held a dying patient’s hand, cried with family members, and was blessed to be able to care for so many people. Nothing could have prepared me for taking care of my own family. It is hard to watch your loved one go from being independent to dependent, struggling and coping with chronic illness. Instead of being my parent’s daughter, I have become my parent’s caregiver. I have learned a lot through this!

I have learned that the best way to help my loved ones is to listen, to understand, to praise them, to be patient, and, most importantly, to be present. For five years, I lived on the West Coast and my parents on the East Coast. I moved back home with my husband and children to care for my parents. My dad, as his Alzheimer’s reached its final stage, would forget that I moved back home. Each time he saw me, he would cry happy tears. This experience taught me the importance of being present.

The most important gift we can give someone is our time. So, as you care for someone who is suffering from an ever-present illness or disease remember that just being there can transform their day. Empower yourself through the understanding of their chronic illness. Listen with your full attention. Be supportive and encouraging on the good and the bad days.

Today, when I brought my mom lunch, I saw her smile. It was at this moment that I knew that this was the perfect way to be helping her while she is coping with chronic illness!

And remember…

For greater insight into interacting with those suffering from chronic illness or if you would like to chat with others affected by chronic illness, I highly recommend joining the app, Reachout.

coping with chronic illness

For the past five years, I have been taking care of my parents who both have a neurological disorder. The strength, perseverance, and hope my parents possess inspire me to be a better person each day. It brings me great joy to listen, encourage, and help others. I feel that this is my life's purpose. In my free time, I create upcycled art pieces, hike, and dabble in photography.
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