Laverne and Suzi 1967
Guys, I need help.
When I started this blog it was to share my ideas, experiences and (dare I say) wisdom with anyone who cared to listen. If you do follow GA, you may have noticed that I haven’t posted anything in a while. That’s because I’ve been struggling with the reality of being a caregiver to an aging parent…with dementia.
Honestly, it’s not helping my mom with the housework that it is the problem. I don’t mind doing her laundry and cleaning her house. I don’t mind taking out the garbage or helping her at the grocery store. I don’t mind driving her to her doctor appointments and having brutally honest discussions with her doctors about her current health. And even though it’s not pleasant, I don’t mind having to change her bed linens after the occasional incontinence.
What is killing me is that this thief, called dementia, is stealing my childhood from my mother’s memory.
I can’t say that my mother and I were ever really very close. Circumstances during my childhood kind of left me to tend to myself emotionally, but I’m not bitter over that. I am bitter that somewhere in my mother’s brain live the happy memories of raising my two older brothers but my childhood is but a shadow. Gone are the memories of birthday parties, high school dances, graduations and achievements. Even the precious few “mother-daughter” moments we shared have been erased, lost in a maze of dying synapses.
I’m bitter and I’m jealous. I’m jealous that she can fondly look back on the little league games of my brothers or the boy scout meetings she organized when she was their den mother. I’m hurt that she can recount the details of games they played at birthday parties and can even remember details of their infancy. She remembers little of my childhood and even most of my adult years. As an overachiever kid who spent so much time and energy trying to be responsible and scholarly, a kid who did everything she could to get her parents’ attention, this feels like a slap in my face.
And worst of all I feel alone in this whole process. My logical side tells me I’m not alone. My husband has gone above and beyond to be a support system for me and to help my mother continue to live independently. My brother and sister-in-law have done the best they can to offer support from afar. I know they have my back. I also have a group of friends who are struggling with the same issues with their own parents and they have listened to my confessions with love and compassion.
But it’s my childhood that is being stolen. Not my husband’s. Not my brother’s. And I feel alone in my anguish.
So as this disease progresses and I learn to cope with the pain of watching my mother forget me, I need to know that I’m not alone in this journey. I need to know that if I wake up in the middle of the night with a heart-pounding panic attack and come to my “white space” I’ve created on this blog, someone will hold my hand and tell me I’m doing the right thing and talk me off the cliff.
I need to know I’m not alone.
Blessings,
Beloved Susan,
I would gladly hold your hand in the those moments of your panic, and would hold you back in a loving embrace to prevent you from getting anywhere near a cliff. Losing your mother in this way must be so much more difficult than a simple passing, as you feel yourself and your life diminished and fading away as she is slowly fading. I would hazard the obvious guess that this pain is accentuated for you because your connection to your mother was more tenuous than most, and so it makes your very being feel more tenuous as her memory of your childhood slips away. I hope that you can take some comfort knowing that your are firmly rooted in the childhood memories of your own daughters. You most certainly are not alone. My heart goes out to you. Cnawan
Dear Cnawan,
It’s funny to me that even though we all experience loss in our lives we always feel so alone in it. My mother is not one to talk comfortably about illness or death. Perhaps it’s a generational thing. But I do know that there are so many others who have gone down this road before me and their insights and perspectives make dealing with my own anger and jealousy so much easier.
I am most touched by your comment about being rooted in my own children’s memories! I’ve spent all of their childhood trying to do exactly that; create beautiful, happy memories for them to cherish when they grow up. Thank you, Cnawan, for letting me know that I am truly never alone. I am grateful for your friendship.
Susan
You are never alone….even if we can’t be with you, hug and talk to you….we are always thinking about you. This decease that I call “selfish and unfair” steals from our loved ones slowly and relentlessly. But we can’t blame. We can remember and continue to love. You are not alone and never will be.
I do know you are always with me and would come running to help at a moment’s notice! And you’re right, I cannot and do not blame my mother for something she can’t control. I guess that’s what makes it feel so lonely and that’s why I wrote this piece; so I can connect with others (and I know there are many) who are in the same place as me. You all are the Angels that help me with my perspective. Love you!
Susan,
I was wondering about your absence and was happy to see a notification in my in -box that you had posted. And now, reading your post, my own heart aches and swells with empathy for the pain and sense of aloneness you are feeling around all that you’ve expresses. So much that dementia has seemed to steel from you. Yet, inside of your mothers heart, Im sure those sweet memories are intact and cherished, though unable to be expressed. Also, as it was said….so true that you have made such beautiful memories for your own children.
Hand held. Comfort sent. You are so supported.
I can tell that you are such a light, sister. May that light be reflected back to your heart 3 fold.
Love and blessings,
Angelina
Thank you so much, Angelina. I admit I’ve experienced many a heart break in my 52 years, but I’ve never felt alone until now. And in all of this I know I am SO NOT alone, it’s just that her memory loss at this stage impacts me the hardest. I am so grateful for all of the loving comments and support that my readers have extended to me and the others who have shared this post so that those of us on this journey can support each other. Cyber hugs, Angelina, and thank you for sharing your beautiful, brilliant light with me.
Blessings,
Susan