Caregiver Help Workshop

This week, I attended the Education for Public Health Grant event held at Pittsburg State University in Pittsburg, Kansas. The workshop was presented by Elaine K. Sanchez, author, speaker and co-founder of CaregiverHelp.com 

The program details caught my eye:

• Coping with Caregiver Anger and Guilt
• Understanding Caregiver Depression and Grief
• Managing Dementia-Related Challenging Behaviors
• Developing a Plan for Self Care

The presentation was directed at caregivers, nursing students and care professionals. As I watched the young students in the audience, I was glad to see that emerging professionals are being made aware of the unique challenges that Alzheimer's and dementia patients face, as well as the obstacles caregivers have to overcome.

I was reminded to develop a better plan for self care and comforted knowing that others have faced many of the same difficulties we are facing as caregivers.

Disease Progression

Earlier this month, we were shocked and saddened to realize that my mother has begun having hallucinations.

Seeing the stages of her disease progression is disheartening. We are realizing that we are reaching the limits of our ability to care for her in her home. We have begun the daunting task of exploring options for the next phase of her care.

Unraveling: a caregiver's journey of discovery

On December 9, 2015, I presented my graduate school applied research project to complete my Master of Arts degree in Communication, Unraveling: a caregiver's journey of discovery, an auto-ethnography documentary film. My defense was approved and scored by my committee 'with honors'.

I shared with my committee and those in attendance that during my project, there were times during the last two years that I wished I had selected a thesis option--how that would have been easier. How it would have been much easier to select a subject that I was not so personally connected to, one not so intertwined with.

However, I know that I was called to share this experience of caregiving for my mother who has early-onset Alzheimer's disease. I am grateful to have had this opportunity to capture and share this story. And I am so thankful for those who challenged me to pursue this project. Those who encouraged me to keep going even when it got difficult. Those who supported me when I felt like quitting. And those who comforted me when there were no words, only tears.

Coming soon, the trailer: The heart behind Unraveling.

Can she feel it?

I have noticed that sometimes my mother will touch her head when having mental strain. In one of the video sequences I shot for my documentary film, I noticed that when she completely forgot her train of thought, she touched her temple and rubbed up onto the front part of her head, above her forehead.

She has been experiencing headaches in the last 3 months. More than normal. At one point, we took her to urgent care after several days of headaches and a spike in confusion, disorientation and overall behavior decline. The examination revealed no specific, treatable physical ailment. It was disheartening to see.

My family and I have lived with my mother to care for her for over 3 years. We rarely have visitors since this increases her anxiety. This weekend however, we had my husband's parents over to visit for 4 hours. My mother would not come out of her bedroom while they were there. She was visibly upset, uncomfortable and agitated. She lay on her bed, covered up with a blanket except for the times she seemingly had forgotten the visitors were there. She would come out of her room every 90 minutes or so, look around and then go back in. After they left, she told me she had a terrible headache. She pointed to the middle of her scalp and said, "It hurts from here, all the way down," running her fingers forward to her forehead. As she made this motion, I realized this is the frontal lobe of her brain.

A sickening feeling washed over me. It's as if she is feeling her brain die.

Since she had breast cancer in 2010, her doctors were originally looking for brain cancer. Cancer is treatable. Cancer, even sometimes brain cancer, is operable. I recall her first physician telling us after her second brain scan, "Her brain shows signs of shrinkage and damage."