Connections | by Linda Brendle
Published in the Rains County Leader on May 25, 2021:
Writing is all about communication – about sharing thoughts and ideas through the written word – and about the connections that are made through that sharing. A writer often doesn’t know when those connections happen, but one of my favorite parts of writing is when a reader reaches out through a review, a comment on a blog or Facebook post, or an email to let me know about a connection.
An early connection happened when I was just beginning to be active on social media. Facebook groups had not yet popped up, at least not in the numbers that exist now, so I contributed occasional articles to several independent websites. One article was about my anger as a caregiver. I admitted lashing out in frustration and anger at my Mom when I first began caring for her only to realize later that my anger, and the underlying fear, were really about the Alzheimer’s that was taking her away from me in a way I could neither understand nor control.
Shortly after the article went live, I received a comment from a young woman whose mother had suffered a fatal heart attack many years before when she was a teenager. The older daughter had driven them all to the hospital, and the teen was confused by her sister’s apparent anger at her mother. After the mother’s death, the sisters were not completely estranged, but they never talked about the situation, and their relationship had not been the same. After reading my article, the younger woman approached her sister, and they talked. After exploring their feelings and reactions on that night that had changed their lives so many years before, healing began and their relationship was restored. Although we exchanged a few more comments, we didn’t strike up a friendship. Still, those written words established a point of connection based our similar experiences.
Personal hygiene is a major issue for caregivers of Alzheimer’s patients. One of the first symptoms I noticed when Mom and Dad’s memories began to fail was their lack of attention to cleanliness. Their little house that was usually thoroughly cleaned once a week was instead neglected and filled with the odor of unwashed bodies.
It didn’t take much interaction with other caregivers to discover that lack of hygiene is a common topic of conversation in the dementia community. Many support group meetings were devoted to the reasons behind and the solutions to the problem, and many posts on the Memory People support group on Facebook are also devoted to the subject. (more…)
This is the 7th video by Rick Phelps that I have posted. Rick is the founder of Memory People, an on-line support group for patients, caregivers, family members, and advocates who have been touched by Alzheimer’s. Rick was diagnosed with Early On-Set Alzheimer’s Disease in 2010 at the age of 57. Since then he has devoted himself to raising awareness about this terrible disease.
Today’s video was made on November 9, 2012. In it Rick talks about how tired he feels and tells caregivers not to worry if their loved one sleeps a lot. He also talks briefly about nightmares and driving, and he talks about Sam, his companion dog. (more…)
Rick Phelps has made a number of videos that chronicle his personal journey through Early Onset Alzheimer’s Disease. In this video he talks about how he struggles to maintain an interest in things that once were important to him and how hard it is to socialize, even with those he loves. (more…)
For those who don’t know about him, Rick Phelps was diagnosed with Early Onset Alzheimer’s Disease in 2010 at the age of 57. In the hopes of raising awareness about the disease, he has made a number of videos about his personal journey. With the same goal in mind, I’ve been posting his videos each Sunday. In today’s video, Rick talks about how loss of reference points affects a dementia patient’s ability to understand some things we take for granted like time and date. In the last half of the video, he tries to give caregivers a patient’s perspective on some common battlegrounds like hygiene issues. He also talks about his feelings about being placed in a residential care facility when the time comes. (more…)
As a dementia caregiver, I lived under a perpetual load of guilt. It was not true, rational guilt that came from wrongdoing, but rather a constant vague feeling of unrest that continually ate at me. No matter how good a job I was doing, I never felt like I was doing enough. No matter how well I handled a situation, I always felt like I could have done better. Somewhere in the back of my mind, I had the unrealistic idea that if I did everything right, Mom and Dad would get better. When this didn’t happen, when they continued to slip away from me, I wrestled with the feeling that they were losing the battle and that somehow it was my fault.
For several years I helped facilitate a caregiver support group at my church, and I discovered that I was not alone in my struggle with guilt. Most of the members of the group dealt with the same issue. We knew that, for the most part, our feelings were unfounded and that we were doing the best job possible under the circumstances. We focused a lot of attention on encouraging each other and finding ways to overcome this guilt. (more…)
Rick Phelps was diagnosed with Early Onset Alzheimer’s Disease in 2010 at the age of 57. In the hopes of raising awareness about the disease, he has made a number of videos about his personal journey. With the same goal in mind, I’ve been posting his videos each Sunday. This one was made February 4, 2011, and is titled “I Knew.” In it Rick talks about knowing something was wrong several years before he was actually diagnosed. He also talks about how difficult it is to explain what having Alzheimer’s is like, how different it is from forgetting the name of an acquaintance or misplacing the car keys. He also shares his desire to make the most of time with his family while he can still remember who they are. (more…)
The last two Sundays I have posted a video by Rick Phelps. Rick was diagnosed with Early Onset Alzheimer’s Disease in 2010 at the age of 57. He has made a number of videos about his personal journey. He called this one “The Elephant in the Room,” but I titled this post “A Bad Day,” because he was having one when he made it. He explained what having a bad day is like for an Alzheimer’s patient as only one who has experienced it can. He talked about time, communication, caregivers, mirrors, driving, and Memory People.
I am Dan Willaford
In Sunday’s post I mentioned a Facebook group called Memory People, a network of patients, caregivers, family members, and advocates who have been touched by Alzheimer’s and other forms of dementia. One of my new friends is Linda Wilkins, and she is caring for her daddy Dan Willaford. She recently had a conversation with him about what was going on in his mind. Following is the heart-wrenching account of that conversation: (more…)
Rick Phelps was diagnosed with Early Onset Alzheimer’s Disease in 2010 at the age of 57. He started an Alzheimer’s and impairment support group called Memory People, a network of closed Facebook groups where patients, caregivers, family members and advocates can share stories and walk this journey together. The groups are closed, not for purposes of exclusivity, but so that anything shared is safe and private.