Thursday, April 3, 2014

Holding On to What is Left.

There are many ways in which I feel I didn’t know my father. This is partly because his story started long before mine, and partly because he was so private and uncommunicative about his past and his thoughts and feelings that all I have are the bits and pieces he saw fit to tell me, or that I observed, or that I was told by others. This information may or may not be entirely accurate because it is impossible not to have altered this information, either through faulty recall or due to the effect of translating it through my own filters of belief and understanding. 

There are a few things about him I am familiar with or accustomed to – ways my heart still recognizes him as being my father, but there were so many elements about him that were a mystery to me, so many ways in which we were not close or connected, that I have been able to feel a peculiar detachment throughout much of his illness. Perhaps it made it easier that he wasn’t the most engaged father and that we weren’t terribly close because there wasn’t much that I missed about him, like I missed about my mom.
I read so many posts on Facebook and blogs and forums by people that mourn the loss of their loved ones to dementia, and wish for those people back in the ways they used to be. I have never wanted Dad ‘back’, or wished that he was the Dad he used to be. I have been saddened by all that he has lost and by the fact that he will never know my life the way it is now. But I think it’s more that I grieve the idea of how it would be to have a father now that I am an adult. Perhaps if your relationship with your loved one was similar, you’ll understand.
You can’t have back what you never had to begin with, but with a little grace, a little luck, and a lot of work, you can have something that is new and good.  I didn’t feel as if I needed to hold on to who he was which made it almost easy to adjust to who he became in his illness - the new person I would meet each day. I accepted each person that showed up. It was easier to adjust to what disappeared in him because there was so much I didn’t know about him. But I am doing my best to hold on for him to all the things he used to be and do and know.
For those people who are closer to their loved ones, who know them more intimately – everything they think and feel and have experienced – those people will have an even harder time as the disease progresses. They will have a much harder time adjusting to the loss of all they have known, valued, recognized, and depended on and they may have difficulties forging connections to who that person is now. Dad and I were able to make connections in our own way. We joked and teased each other, and had fun together doing simple things like walking and going to lunch. He also showed me a lot more affection as the disease progressed, and expressed his love and appreciation for me.
I may be an imperfect repository for Dad and what he was, but I am a necessary one - a memory holder and storehouse of as much as possible of Dad. The disease forced him to give up so much, and will eventually force him to give up everything. I believe that tiny elements of what makes my Dad who he is will remain within him until the very end, and I’ll do my best to hold on to who he was, as well. Long after he is gone, I will remember these facts and feelings so that he lives on in my memory. It is a gift to your loved one to listen to their stories, and to hold on to a little bit of their souls. My Dad and I have certainly had our issues, but it comforts me to run these memories through my mind and tell the stories to my husband, because in that way, a little bit of Dad remains in other people, as well. 


  1. With dementia we only have this very moment. Each moment we can fill with joy, or not. Thank you for reminding me.

  2. Oh My......
    Your story is so similar to mine. I'm bringing my Dad home after a long stay at the VA hospital. Thanks for sharing your story. The relationship with my dad has been rocky. However, it's that he's ill I seem to remember only the good. It's going to be a sacrifice to me and my family bringing him home. It's been 4 years since the official diagnosis. It's getting worse. The less sleep and periods of agitation/aggression are starting to happen every 2-3 weeks. One day at a time....I will continue reading your posts...thank you so much...

    1. I'm so glad you found the blog and so sorry this is happening for you. I have lots of links for help with symptoms and behaviors, keep checking the side bar. Good luck and take care of yourself!