The following is a series of posts on the terrain I have encountered with my mother’s dementia. Of all the pieces, the introduction (Part II) was most recently written (aside from this preface). Afterward come more posts, mostly in the order in which they were written, which is largely chronological, but sometimes is not. I wrote these to begin to give coherence to my own overwhelming feelings – confusion, resentment, guilt, bewilderment, indignation, frustration, grief – and to provide a vent for the absurdity that surrounded me.
These writings cover a five-year period in the life of my family. Throughout the writings, I sometimes refer to myself as in seminary. These writings cover years which coincide with the five-and-a-half years I spent in official ministerial formation, studying for the Unitarian Universalist ministry, into which I was recently ordained.
I am offering these writings in hopes that they might be meaningful beyond my own personal echo chamber. I hope that someone struggling with a family member with dementia might stumble upon them. Or that you, dear reader, might send them to your friend or co-worker who is in need of the companionship I offer here. It is my hope that they – which is to say, you — recognize themselves, and feel emotional validation, or a whisper of calm in their own personal storm this disease wages upon us mortals, or just a little bit less alone.
I want to share my little bit of truth because I believe it encourages – gives heart to – others in need of that very quality. Even if that truth is the less-than-pleasant kind – a truth about dementia, a truth about being a less-than-stellar daughter, a truth about my own idiosyncratic flaws.
- If you are not a fan of gallows humor or swearing, these writings are not for you.
- If you would like to maintain an illusion that clergy are always angelic, contain no snark, and always know what to do (or always do the right thing), these writings are not for you.
- If your love of your mother is pure, elegant, and simple, these writings are likely not for you.
- If you believe that facing fear is better than turning away from it, these writings might appeal to you.
- If you have a salty tongue or an irreverent outlook on life (or appreciate one), these writings might appeal to you.
- If you are caring, in some small or grand capacity, for a mother or father, a spouse or beloved, who is living under the ravages of dementia, in their own home or at home with you or in a facility that might be just right for them or is likely just good enough (I pray for you and yours that it is good-enough, knowing that this is not true for all), these writings might appeal to you.
- If you know that grief is the other side of gratitude, that sorrow is the other side of kindness, these writings might be for you.
As the Irish say, may the road rise up to meet you,… but may it not smack you in the face. When it does – for surely the topography of dementia will do that, and more – know that good, kind-hearted company, gallows humor, and connection to gratitude will ease the pain.
Blessings on our shared journeys, Rev. Karen
4 thoughts on “Adventures in Dementia*land: Part I”
Rev. Karen: Thank you for sharing your story. As a fellow caregiver, I appreciate the cursing and snark. In fact, I found your work surprisingly short on cursing and snark, and long on honesty, humility, facing the truth, and love — deep, imperfect, difficult, demanding love. (I live with and help my dad care for my mom and my grandma, and when I speak or write about it, to friends or to the public, I use a lot more curse words than you have here.) Best wishes in your life’s work — both the ministry and the family healing, which of course are intertwined beyond explaining. Mahalo & Aloha, Holly
Yes, you may be right. I probably curse much more in person than in my writing. It sounds like your life is full and I appreciate the wisdom throughout your comment. Peace to you, Holly.