As children of parents that have been diagnosed with Parkinson's or Lewy Body Dementia, one of our greatest concerns is striking the balance between honoring our parents' independence and wishes for where to age in place while keeping them safe, comfortable and happy. For many of our parents, they want to stay home. I don't blame them - I would too. Today, home can be the most affordable and comfortable option for aging in place despite a diagnosis of Parkinson's or Lewy Body Dementia. But it requires support and reprioritizing our life to ensure the happiness and comfort of our parent's quality of life and overall well being.
Even prior to COVID, many senior independent, assisted living, memory care, and skilled nursing facilities were facing a crisis when it comes to staffing shortages. This causes a significant impact to patient centered care, timely medication, and prompt care when it comes to assisting with daily care needs. In some cases, we learn that facilities near us are at capacity and have long wait lists. We also are concerned with the impact COVID had on facilities. What if we have another pandemic that requires lockdowns to safeguard our parents against a new bug or infection? Are we really ok with being limited with not being able to visit our loved ones? Many of us may not even have an option to place our loved ones due to enormous costs associated with quality facility care. Because of these issues, more and more people are weary about making the decision to choose facility care and are opting for home.
Often, we choose the facilities hoping to provide our loved ones with engaging care that keeps their quality of life better than what we may be able to provide to them at home. For some of us, we don't have an option but to choose facility care based on the lack of support family can provide. For others, we may not have a choice but to stay home because we can't afford quality facility care - even when providing care at home isn't ideal. Regardless, each situation is unique and I believe that we try to make the best decisions for our loved ones.
Did you know that China requires families to log and report the time they spend weekly taking care of their parents? Italy doesn't even allow anyone into a care facility unless there are absolutely no family members available to care for their needs. This may seem extreme, but it also demonstrates how many countries and cultures define the obligation of families to care for their elder family members themselves.
Today, more than ever, we have an opportunity to keep our loved ones at home due to the many home health and home care companion services available to help offset the caregiving journey with respite care. But it doesn't mean that the job of a care partner is easy - and it is certainly a job greater than any one person can do.
In Chapter 6 of my book, Sunsets and Silver Linings - I walk through the benefits of choosing home when it comes to aging in place with a Lewy Body Dementia or Parkinson's diagnosis. We talk about how important it is for us as adult children to be fully engaged in the journey. We go over how to set the home up safely to minimize fall risks. We talk about products, gadgets and solutions that can be purchased to help with mobility and transfers. We look at tips for making more challenging times, like sundowning, easier. We discuss ways to combat triggers of agitation through engagement, and how to recognize the difference between daily complications or exaggerated symptoms that may indicate infection or additional medical attention.
We also look at the areas when home may not be the best solution, and when it may be time to consider additional care needs beyond the home. While I am so grateful that I was able to keep my dad home with the exception of one inpatient rehabilitation stay - I understand that not everyone has the same circumstances making that possible. For those of us that choose home, or that home is the only option - my goal is to make it as easy as possible to navigate.
No one provides a roadmap on how to be a caregiver. But by sharing our stories and tips, as well as hard lessons learned, my hope is that you can learn from our journey to make your path easier, lighter, and filled with more joy and grace. The link to purchase the book is below.
About the Author: Brooklyn White has spent more than 25 years writing and researching in the corporate world across multiple industries through various marketing and communications roles. Over the last decade, Brooklyn has been on a caregiving journey with her parents, while balancing a demanding career. Providing care for her father awakened her spirit and passion to care for aging seniors. Brooklyn now spends majority of her time writing to share God's word, advocating for Parkinson's and Lewy Body Dementia, and capturing stories of fait, legacy and family. She resides in Chelsea, Alabama.
Additionally, Brooklyn recently accepted a position with the Parkinson's Association of Alabama where she will be responsible for building the Online Resource Center for everything Parkinson's in Alabama, and offering personal, Care Navigation Assistance to plug people into the local resources they need throughout the state.
Proceeds of the book will be going back to benefit Parkinson's and Lewy Body Dementia Respite Care and Research.
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