Being Held

I had been waking up with a sense of urgency to see my mom. Somehow I could feel the changes she is experiencing. And I guess I selfishly want as much time as I can muster. So cheap plane ticket found and plans made and here I am, sitting beside her this morning while she slurps down her breakfast.

I loved my dad, but he had his own dis-ease with life and alcohol was his drug for self medication. And it drastically changed his personality, so the end result was a little girl never knowing what love could and should look like. Somethig that has shaped me, shaped my life and always presenting an internal tug of war.

Fast forward to this morning in Oregon. And a stepdad we lovingly call SuperStan. We gave him that title long before he morphed into a constant caretaker of our mother. He has somehow found his personal path out of alcoholism and into the man I see tenderly keeping my mom home  in her familiar world and keeping himself steady and strong for what lies ahead. Some kind of love that seems a bit overwhelming to me at times- like this morning. I walked into the living room where my childlike mom had curled up next to him on the couch, assuming the spooning position. She was being held inside his arms and I could feel her again- the safety and warmth in his gentle embrace. I can't explain the lump in my throat or the enormous gratitude that washed over me. I couldn't help making a comparison of where she has been and where she is now. I find myself being held, too, in a round about way. And because of this man, my mom is still my mom to a large degree because his love reminds her and guides her. Never take being held for granted......

Eighty-seven

87

My mom's weight was 87 pounds a couple of weeks ago.

She spent the majority of her adult life worrying about being overweight. And sadly, sometimes she would call me and begin the conversation with "how much do YOU weigh"? Kind of constantly comparing the two of us (for whatever reason?) It never really mattered, but I wondered why it seemed a big deal for her.

So as I see pictures of her frail, tiny body, memories flood in. But I also find myself thinking about how we all tend to find fault in ourselves, internally criticizing and searching outward for validation that we look ok, we sound ok, we "fit in" ok. And in the end? Does it really matter what others think? Maybe the best bet is to have or discover an internal dialogue that reminds us we are enough. We are pretty enough. We are perfect enough. We are magnificent in our own, unique way. We are the best at any given moment-- and at any given moment we are subject to change. 

The inside is the only thing that matters. The ONLY thing that matters.

Frogs

Coming from a "dysfunctional" family shaped me into who I am. And who I am has never been so clear to me as it is right now. 

My mom has always carried a child-like essence. Her spirit is curious just like a toddler. Her sense of humor matches that of a young person. And that fairy-like attribute has been a blessing and a curse. It served her so well as an elementary school teacher, someone able to relate and play with and encourage those in her classroom. Her heart is as wide open and naive as an innocent young girl, even though life has repeatedly put her to the test. She collects little knick knacks that are whimsical and comically presented. Frogs. Everywhere frogs. Their significance in her world isn't lost on me. Creatures that adapt and change according to their surroundings. Creatures who sing and chirp and hop and flop and have that same sense of youthful exuberance that she has always had.

Those are the blessings. The really big blessings.

From as early as I can remember, I stepped in to be her guardian. I have always had this hugely urgent protective tendency where she is concerned. (A lot of the time feeling like a curse.) Over the years it became her joke that I was really her mother, and she was really my child. And sometimes I think that is exactly what happened, our roles reversed. And even when thousands of miles separated us, I felt an ever present "guilt" or whatever it is that I wasn't closer, that currently I'm not THERE to help take care of her as she becomes even more and more like a child needing constant care and tenderness.

Before I left home, a dear friend who recently lost her father gave me a big hug and said, "You know, it's a grieving process not only for letting go of your parent-- but it feels like you're losing your child, too." She explained how sometimes it winds around that those who once cared for you are now the ones you have to care for. And that made so much sense to me. Why the mourning takes on such a deepness. It's a double whammy. Parent/child. 

I'm so thankful I am currently here with her. Her small child state. I can hold her hand. Try to make her laugh. Soak in her innocence and pureness. And shut out the rest of the world and simply "be" with her.

I think the biggest thing I am gaining is feeling ok about the blessings and the curses. They all dance around each other and become the backdrop of life. And all the negative spaces and positive spaces create the unique design that is ultimately who we are. Dark and light. 💜

No Food... Fear... And Empty Space

My brain is trying to find words that encapsulate an emptiness and experience that hover in the shadows way beyond description. But I know that words tumbling outward help me get through the inward battle where my fearful child self is fighting off the demons that keep tearing away fragments of the woman my mother was. Piece by piece they have torn her away from herself, away from her children, husband, friends, grandchildren... And losing her in little parts seems the most cruel form of life punishment there is. Here I am for a few short days, trying to allow my stepdad some much needed "breathing room" time. And while I feed, clothe, wash, calm, clean up accidents, I find myself in that "nothing" zone. I can't feel anything, not joy, sorrow. Not even that familiar feeling of "numb". It's a place more than any emotions or lack of emotions and I find myself wondering if this is normal. I feel like I am just an empty locust shell with all the stuff that makes me real-- gone. Missing.

Mom keeps getting upset because she thinks the refrigerator is empty. She is in fearful panick that there will be no food for her next meal. That there isn't going to be enough for dinner, let alone tomorrow and the next day and what is she going to feed us all? Around and around I follow through her loop. And we go look inside the fridge to find reassurance and we create a plan B together, working on problem solving the imaginary emergency her thoughts have created that feel more real to her than reality around her. We've talked about how maybe it stems from her brain being triggered and taken back to other times when she was so worried about lack and never knowing from where answers would come. A cleansing on a cellular level. But pure hell for her to be trapped inside of. A part of her realizes she's caught in a warped thought pattern, and tears stream out of her eyes. 

I keep thinking that what I can take from my current interaction with her is--- a sense of peaceful knowing that everything always somehow manages to work out in this life. Bills get paid. Food is provided. Clothes keep us warm. Jobs find us. We never end up completely alone. And even when we think we are at our darkest hour, some little or big thing happens to turn it all around. All of that is who my mom used to be: a woman who even in her struggles and conflicts found a way around, under and through. So in her anxiety, confusion and angst, she's pushing me towards embracing a deeper attitude of trusting that everything will always be all right.

Maybe I have to be in the empty space for awhile, a space where I can see this disease as an objective observer. Maybe in that place, I am able to rise above the hurt and harm and see a bigger picture. But man do I ever miss feeling alive and vibrant.

I'm angry at Dementia/Alzheimer's for taking away her shine and for tarnishing my own light.... Or maybe? Like the food in the fridge, the shine and light are there, just unseen right now.

Meeting Mom For the First Time

In about a week I finally get to go see mom. I was so afraid of facing the experience, seeing how she has changed, I was waking up in the mornings trembling from head to toe. I felt like I was choking, literally, thinking about whether or not I have the personal strength right now to see her. Not a day goes by that I don't miss everything about my mom. I can't find her friendship, love and understanding among any other faces, no other smiles and no other arms. Middle-aged woman totally lost without being able to reach out to the one person who always knew me very best.

The past several weeks, my stepdad has been literally walking me through his daily journey. He sends pictures of him feeding her, her having a good day, feeding herself. He gives updates and anecdotes, stories and strategies. He has been more than amazing -- there isn't a word to describe his heroism in keeping my mother out of a nursing facility and in her own environment.

When I told him my son and I are coming, his response was, "you'll get to meet the woman your mother is." I am still blown away by his comment. He has made an incredible observation. One I believe we all need to take a look at more closely. He watches how doctors and nurses and those who have charge over dementia and Alzheimer's people - focus so much attention on what that person has LOST. They measure what CAN'T be done any more, what CAN'T be remembered. What CAN'T be completed. My stepdad has shown me the beauty found in meeting my mother every day exactly where she is. He meets her with newness and meets her all over again for the first time. His focus is on what she CAN do. And together they are magnificently helping my selfish ass out of the fearful trembling and the inability to face what lies ahead for my own self.

What more powerful lesson can there be? Are any of us the same each day? Are any of us really totally predictable or robotically programmed? Every single one of us rises each day a different person. We have to be. Life constantly changes our shape.

Instead of dreading my visit, I am opening myself up to meeting my new mom. Right where she is. Who she is--- now.

But I Wasn't Ready

But I Wasn’t Ready

This one sentence has been replaying over and over again in my mind. The Des Moines community recently lost a couple of beautiful women to cancer, two women who deserved much better than to go out in such agony. And sitting here this morning thinking about them, the words swirl; “but I wasn’t ready”. They both passed any way despite my not getting there one more time to see either of them.

Thinking back over tragedies, losses endured, losses facing me now; “but I wasn’t ready” is the only thing that seems to remain intact like a worn out vinyl record losing it's ability to make a sound.

I was never ready for divorce or for empty nest. Never ready to be swept off my feet “in love”. Never quite on my toes and ready to hear the news, “he needs surgery and may never see again” or “your mom has suffered a severe stroke” or “your dad is in the hospital, probably dying” or “your grandma was calling your name right before she passed on”. My mind and heart have never been ready for “come to Maui and learn” or “would you like to house sit and spend time at the beach?” or “let me buy you a plane ticket so you can come see your mom”. No matter what the circumstance, even when I try to prepare for what lies ahead, what is coming around the corner, I am never quite expecting what presents itself, both bad and good.

And now, knowing my mom is on such strong medication, knowing her condition is deteriorating to the point I can no longer keep running away from the emotion that it all brings to the surface, I find the mantra in my head spinning out of control again. But I wasn’t ready.

There is a helplessness in life that teaches us we are never in control of anything. We spend a lifetime trying to convince ourselves and others that we are. But simply? We are never really prepared enough or brave enough or weak enough or strong enough or able enough to cling and hang onto anything. We never have enough foresight to say all the right things, feel all the perfect ways there are to feel, experience anything deeply enough or widely enough. And that helplessness can either sink us or free us somehow. Or maybe, a little bit of both all at the same time.

I am realizing how often I spend my precious time worrying about what is going to blind-side me next. Or planning and strategizing for “the perfect life” that I want to be creator of. But day after day I utter the words “but I wasn’t ready”.

I’m feeling rather small in the shadow of my mom’s disease and my stepdad’s brave journey as her caretaker. As my mother shrinks, so do I… and I am not ready. I don’t know how to deal with all of this and I have had no words for months now because I simply can’t find my own footing any more. No matter how you try to mentally prepare, how much outer armor you try to construct, how much you guard your heart against any more brokenness, nothing prepares you to lose someone like you mother, your best friend, the part of you that will always remain buried in your DNA and cellular memory. And yet here I am now, being forced to face the kind of life shattering loss, the kind that feels like it has destroyed my inner compass and made me shout a never ending “BUT I AM NOT READY”!!!!!!!!!!!!!!!!!!!!!!

My beautiful niece reached out to me in the midst of my tears last night and sent the following words and I hope she doesn’t mind my sharing them. I truly know I am not alone in the shrinking… I know others are going through, have gone through or will go through similar. So it is with the intent to share her view of strength to offer something soothing, pass forward her gift to me in a feeble attempt of me wanting to make some ripple wave outward from enormous amounts of “weakness” and “vulnerability”.

My niece’s words that launched words (finally) in me this morning:

“People misunderstand and mis-describe what strength is.

I think 98% of strength is showing up to stand with/sit beside the people we love, even if we’re a weeping mess, who hasn’t showered in 4 days, wearing sweats and a t-shirt from 1994 because it’s the last clean thing in the closet. Strength is rolling on the grass and yowling in agony because you know that’s the last best thing you can do to keep your sanity. Visible emotion isn’t weakness. Tears aren’t weakness. Pain isn’t weakness. Exhaustion isn’t weakness. Self-care isn’t weakness. Our patriarchal society tells you lies about your strength – but it’s not gonna break you because you are strong in ways it is blind to. You always have been and you always will be.”

***this coming from a young woman who lost her mother years ago to breast cancer and who has been my pillar of strength for a very long time

I don’t think I can ever offer a comforting sentence again of “stay strong”. I think rather than that sentiment I will forever just sit quietly or offer a tissue or humbly whisper, “I know you weren’t ready. We never are.”