Another caregiver commented the other day that my blog focuses heavily on the positive side of this whole dementia caregiving journey. Caregivers know that we have it tough– far tougher than most of our friends and other family realize. So she is right to ask about this.
Most the of the reality of taking care of Mom at this point in life is just sad. Especially having already lost my dad, I don’t want to be losing Mom to dementia before she sees me marry or have children. And seeing anyone you love fade away is painful.
Besides the sense of losing Mom, I am all too aware of what I have given up to be here for her now– travel, time with friends, the ability to have a normal dating life and hope of finding a good relationship, alone time. I really miss alone time. Then there’s the worry of the finances of paying for Mom’s care through the end. The question of how long this whole journey will last. And I find myself wondering often, what will remain of me and my life on the other side?
So I write this blog to force myself to look beyond these ongoing stresses. To pay closer attention.
Upon reflection, there is humor, love and good kinds of life learning to be found in so many of the corners of this experience. Sometimes it’s easy to spot. Taking Mom to the ocean and seeing her light up at putting her feet in the waves. Joking around about my heavy wine drinking habit. Feeling the purpose that comes in caring for someone. And sometimes it takes more work to sift through all the emotions and find the parts that keep me hopeful or make me appreciate this time with her. But the practice of writing this blog pushes me to do that. It is my space to pay attention to what is here now.
Not quite the plan 
August 26, 2014 at 7:59 am
You are so wise. An inspiration to those older and not wiser
August 26, 2014 at 8:04 am
Wonderful post notquitetheplan and am full of admiration that you do manage to find the positive in this situation. Thank you for sharing this.
August 26, 2014 at 9:39 am
Great perspective!
August 26, 2014 at 11:44 am
Amen Sister. You may find, as I am finding, that it gets easier. Not easier to do, just easier to tolerate. I agree, dementia stinks and care-giving has personal costs that none of us ever expected to have to pay. You’ve got it right though; surviving as a care-giver requires adjusting your focus. Consider yourself among the lucky ones. Very few people get the opportunity to act out, all day every day, the love they have for another person. And lucky too that you that you are so articulate in sharing your experiences with us. Thanks for writing, thanks for the humor.
August 26, 2014 at 2:42 pm
I enjoy reading your blog. It helps me see things in a different perspective and light while caring for my mom. As caregivers we do give up our personal space and time taking care of the people we love. Sometimes friends don’t understand why you cannot just drop everything and join them in something fun. Occasionally, even close family members don’t understand why you won’t just put them in a home. I currently have friends that are going through a similar thing as I am and the lightbulb finally went on for them. It’s nice to hear, “Now I understand.”
Your mom is a very blessed woman to have you in her corner.
September 1, 2014 at 8:07 pm
I feel you on this. Often times my days are dark or close to dark and disturbing. No one could imagine. On those days, I don’t blog, because I would just be a Debbie downer and people would tune out. On certain days though, I truly can see the humor, as a gift, in the midst of this craziness. It’s better to write about that.
I appreciate this post very much.
September 15, 2014 at 1:13 pm
Your courage and strength are inspiring. My mom, 95, with progressive dementia, is now in an assisted living facility. Mostly our communication is with song and music that she and I both share from my childhood. Mom loves the songs, though she is remembering fewer words, of late. Music is now our best way to communicate, as she is not able to have a conversation with language. I know her time here, now, is about feeling happy and this gives me much joy. Focusing on the present moment is the best way, as mom is only in the present. Isn’t this what the Buddhist philosophy wants for everyone?
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