You Get To Keep This

Hello caregivers! WELCOME TO SHINE YOUR LIGHT. I hope to be of service to your family or care community.  I am trained in dementia care, yoga, pilates, and Montessori education. Feel free to reach out with your specific questions and concerns. Let’s see how I might be able to help you manage the difficulties and dark times that are part of this painful passage.

First and foremost, I write to you as a person who has stumbled down this road and would like to see others manage it with greater ease. Secondly, I write as a daughter who is intimately aware of how much it hurts to watch a beloved parent lose their memories and their identity. Lastly, I write as a dementia care practitioner and an educator.

The most hopeful thing I can tell you about dementia is that it does not have the power to destroy a person’s capacity to give and receive love. Because of this, there will usually be a path you can take that is sourced in compassion and reduces suffering. You may not see it right away, your family may not always agree quickly on what it is, but it will be there. This work is about you succeeding in finding it.

In 2010, my father was diagnosed with Alzheimer’s disease. Looking back, it’s easy to recognize the many signs that were present several years before the official diagnosis which resulted from a neuropsychological exam. I felt such fear and despair initially. I was angry with myself. I believed my psychology professors when they told me in the early 90’s that late-onset Alzheimer’s disease was rare.

I knew the primary responsibility for his care would be mine to manage because I lived close by and my father and I had become very good friends during my early adulthood. I was disappointed because my father had been so intellectually active throughout his seventies and we’d both allowed ourselves to believe he had dodged the bullet of Alzheimer’s disease by the time he was 85. My father was particularly afraid of this disease because it had taken his mother’s life at a time when the care for dementia patients was often cruel and misguided. My father’s generation is largely terrified of nursing homes with good reason. Dementia patients were often sedated or restrained when they were deemed unmanageable by staff.

My love for my father was great, despite our many conflicts and his sometimes abusive behavior toward me and others during my childhood and adolescence. I could not imagine how I could be strong enough to watch his mind and body deteriorate, much less maintain my constructive focus on his care. I knew I needed to gather my strength, to find support, to become educated, and to raise my Pop’s spirits, but I did not know how to begin. It was utterly overwhelming, like drowning in a storm. On top of all of this, I passed harsh judgments on myself for having these feelings. After all, Pop was the one who had to die because of this disease. I saw myself as selfish and I vacillated between justifying my feelings and shaming myself for having them. It’s remarkable the way we humans are able to magnify our suffering by telling ourselves stories about blame and believing them. The truth I can see now is there wasn’t much need to distinguish between my dad’s pain and my own. We were not separate. Love linked us in our joys and sorrows. This fact of love was also the greatest ally we had. We discovered this again and again as the disease progressed and we were confronted with new challenges. Each time, love helped us find our way.

If I had known how much good we would be able to create together, despite the Alzheimer’s, I would have been able to take heart and get moving on solutions faster and more effectively. This is why I am writing this. I intend this work as an act of service for all of those who are affected by Alzheimer’s disease and other dementias. This work is for daughters and sons, spouses, care communities, and anyone who cares for someone experiencing cognitive decline alongside the many other losses and challenges of aging.

Within a few months of my father’s diagnosis, I became trained in dementia care and Elder Mediation and began Shine your Light Dementia Care Services. I wanted to share what I was learning with others who are overwhelmed by trying to care for someone suffering from a neurodegenerative disease. Caregivers cannot allow their own lives to completely fall apart because of the pressure, the behavioral challenges, and the sheer exhaustion that results from trying to keep loved ones safe, clean, fed, and rested, not to mention as fulfilled and engaged as possible. My father was fortunate and had long term care insurance. When I could not provide it myself, I was able to find respite and generally good care for him. Many families have no other option but to care for their aging parents or spouse round the clock at home. If you are in this tough position, I hope the stories and techniques you find in this work will help you to create more peace and harmony in your home so that everyone can laugh a little more and rest a little more.

May you find hope, empowerment, and practical tips that serve you in these pages. My heart goes out to you.