Coming into the New Year I had planned to talk about living your life ON PURPOSE. I wanted to really share what has been on my heart about showing up for your life, and enjoying it, and taking ownership of it.
I’ll get there, eventually.
But right now, grief is the muddy river I am slowly wading through.
I entered 2021 with a mother who no longer remembers her family and has been moved into full-time care.
It has been at least 10 years that me, my three siblings and my father have watched my mom slowly be deteriorated by dementia. A diagnosis that was late to come because she was in her 50s when it started. Being so early in life, we didn’t consider her symptoms to be dementia.
I haven’t shared much about what we have gone through as a family – in a way because it didn’t feel like my story to tell. My dad has been the full-time caregiver and in a way, it feels like he carries the brunt. He does. I am buffered by geography and the role of motherhood. I am not on the front lines of the situation, so it never felt like mine to share.
Over the years, it has felt like a slow grieving process as we watched her memories fade, her spirit fade, and eventually her classically stunning smile fade. There are lots of easy jokes to make about the characteristic loopiness of a person with dementia and it can make an entertaining character in a show – but to experience the slow death of a loved one and to keep hanging on for any sign that this could all be magically restored like in a Disney movie – really is an indescribable brand of misery that a family must tread through as they learn how to support and be sorrowful on a consistent basis. I’m sure this is relatable to almost any family who must watch a disease slowly crumble away the person they knew into a shadow of who they once were.
We have all had to rewrite the story on what we thought our family would look like as the years went on. Not only to see my dad wonder how to possibly give himself permission and desire to rewrite his story – but also to rewrite it as a multi-generational experience.
Instead of family gatherings with an atmosphere of heritage and tradition – they are an effort to find new traditions while balancing that added layer of care we would rotate through to give dad a break and be there for our mom. Instead of hearing stories of ‘remember when’ and asking our mom all the questions we never had the guts to, we put together the puzzle pieces of her tales and fact-check with one another. Instead of grandparents who were babysitting my kids, I would try and babysit my mom from time to time. Instead of our own kids hearing all the tales about what we were like as kids, we are telling them stories about what she was like.
This past week I went to the hospital where my mom is staying. She went in a week before Christmas and will be there until she can be placed in care. I wasn’t allowed in but she was rolled in her wheelchair up to the window and I stood outside the window, waving at her. She wasn’t able to focus on me, her eyes kept darting back and forth over the windows like she was trying to figure out where she was and what she was supposed to engage with.
I wanted to burst into tears. Not only does she not remember her family any more, but now she can’t even see me, right in front of her. All I could think was ‘she’s gone’ – a thought I can put on the shelf because logically ‘she’s right here in front of me’.
There is a scarcity perspective that our hearts slip into as we feel someone we love might be leaving us soon. We scramble to squeeze out what last meaningful moments could possibly be available to us – we weigh them heavily as if the final days indicate the overall value of our relationship. We forget that we had years of meaningful moments.
But, for me, the agony of the scarcity is the regret – of all we didn’t see and do and ask and appreciate. Can we get a Do Over on this relationship? Or at least more time? Or must I let her go peacefully while holding all the remorse of what I wished I knew then about her, and let her know about me – and how different it might have been? The loss is the pain, the regret is the suffering.
I haven’t really known where to put the sadness I have felt over this past decade. And as it gets heavier, I realize I can’t keep putting it back up on the shelf.
This morning on the radio they said it is Alzheimer’s Awareness Month and I heard another ‘Daughter With a Mom Who Has Dementia’ share her own experience and remind people that they aren’t alone. It isn’t so much that I feel alone, but that I feel like I don’t have a Right to Grieve . . . at least not yet . . . at least not as much as my father who is losing the woman he wanted to grow old with (by the way, my father has been a tower of strength and warmth in all this) . . . at least not as much as other people who have it ‘worse’.
There is a term for this, comparative suffering. Measuring how valid my suffering is by the suffering of others in the world. And I will give myself permission to drop the measuring stick now.
This is what my sharing this is all about – giving my experience a place to live that is outside of my head and weary heart. And I hope in doing so that this gives anyone else who needs it, permission to allow their pain and experience to be fully felt and acknowledged by themselves.
Today, as I started my workday I felt slow and distant from my work. So, I read through my old journal entries where I have written over the years about my experience as a ‘Daughter With a Mom Who Has Dementia’. I came across this entry from four years ago when she came over for a visit and left her sweater at my house. It was red with brown stripes and shiny yellow threads through it. If I say it is ugly it is because it is ugly, but also because it is not something she would never have normally worn. She always dressed lovely – and now she dressed utilitarian, without intention. Unlike her.
I’ll end with this journal entry. This is what I wrote after I called her to tell her that I had her sweater (Sept 2016):
I called you the other day. I wanted to let you know that you forgot your red sweater here last time you stopped by.
It is often you forget things. But having your sweater here really got under my skin.
Maybe because I thought you’d be so worried about where it was. I thought that you’d be out somewhere and looking for it wherever you were last because you really would think you were just wearing it. Because you always wear it.
Maybe because I walked it down to the washer and washed it, and dried it and hung it – so it wouldn’t smell like you.
Maybe it is because it is hanging in my laundry room. I see it too much. Every time I walk past it I feel saddened to see this shapeless red fabric and I think of that glamorous red short dress you were so excited to wear to your high school reunion. I remember us kids all oohing and aahing with gaped mouths over how wonderful you looked in that dress. You relished in that feeling. You always loved to feel special. This red sweater is not special.
Maybe I’m sad because you don’t feel special anymore, and that was something you always did with graciousness.
On the phone, your voice is now flat. Talking to you is like cold-calling an elderly lady who is open to light conversation but has no interest in sharing her life with you.
There is no talking of the past because your memory can’t be trusted. There is no talking of the future because you can’t live in anything but the moment, and even that poses questions. There is only this. Asking you questions about things that I think will make you feel happy and safe.
There is letting you express sadness or anger over little things that you think about big things. These are emotions that are strange to hear from you, so I welcome them, I want to hear your full experience – even if that experience is now distorted.
There is no correcting your repetitive stories, which makes you feel uncomfortable.
There is finally NOT wanting to change everything about how you think and live because I’ve learned the hard way that loving with judgment is not love at all.
There is mourning the loss of the friendship you always so freely gave and I never accepted.
There is a woman with a flat, almost unrecognizable voice straining to make some small talk with a daughter who loved her immaturely and poorly.
When the conversation is through I always make sure to tell you I love you.
As you pull the phone away from your ear I can hear you express a heavy sigh. Different than all your other sighs -I’ve heard on repeat over the years. This one was one of exhausted accomplishment and it hits me that this phone call was as tough for you as it was for me.