Change | Lewy Body Dementia Association LBDA


by Ginnie Horst Burkholder

Our daughter is getting married!  We are moving into a season of major changes in our family, and it is good. I get to be an instant grandma because her fiancé has an eight-year-old son. I made a treasure hunt for him when they visited us here in Ohio from Kansas, and I got a big hug for it!

As a family we have struggled through some challenging times with Lewy Body. I have heard it said that when one person in a family has a life-changing disease, the whole family has the disease. It is true that we all deal with the consequences. In some ways it seems like only now are we beginning to realize the impact that Lewy Body has had on each of us individually. There are challenges ahead, but for now I want to focus on getting to know the important people in our adult children’s lives.

Writing this blog for the past year and a half has been a rewarding experience. It has been a kind of therapy to try to put into words the experiences, feelings, and struggles that are generated by Lewy Body Disease and spousal caregiving. The very telling of my story has, at times, given me more clarity about the assault of grief that comes with loss. I’m thankful for the opportunity I was given to do this and thank you, the readers, who encouraged me with your responses.

Responses to the blog have played a role in keeping me writing each month. Unfortunately, when my computer-savvy son tried to help me do what I needed to do to respond to the responses, my server or computer wouldn’t cooperate. This eliminated the potential for meaningful dialogue that I would have sometimes liked to pursue. For that reason I have begun to include my e-mail address in the blog entries, and I am inviting direct communication.

I am especially interested in hearing from those who are spousal caregivers, those who have had LBD introduced into their lives in their fifties, or those who have been caring for a spouse for many years.

For the next couple of months I’ll be taking a vacation from writing the blog. During that time I welcome your direct e-mails. I‘ll reevaluate my interest in doing the blog after the wedding, and at that time may or may not begin writing the blog again.

I hope there will be changes in your lives over the next couple months that encourage, support, and uplift you.

© Ginnie Horst Burkholder


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