The Grief I’m Not Allowed to Have

I’m lying in bed, it’s dark, and I hear my phone silently vibrating on the bedside dresser next to me. Adrenaline shoots through me as I grab it, quickly looking at the screen for a call, a text, anything to indicate a communication about my parents. It’s 3 AM and I see that it’s someone sending me a Facebook message. I must have inadvertently left the application open last night. I shut the screen off, take a few deep breaths and even though I’m relieved, I have a difficult time falling back to sleep. Eventually I doze and wake up at 7 AM, feeling a bit sleep deprived.

This is a typical experience for me. I have my phone with me all the time. If I’m going into a meeting, I make it clear that I am on “watch” and could receive a phone call at any time. These calls are my #1 priority and I put them before anything else I am doing, no matter how important it is. If I’m at lunch with a friend, the phone sits on the tabletop next to me so that I can hear if a call or message comes in. My community is used to it by now, I’m not so sure that I am.

My mother is currently in hospice, suffering from a debilitating dementia that has left her unable to communicate or do anything for herself. She lives in an assisted living facility on a floor dedicated to dementia care. My father lives in the same facility, on a different floor, suffering from a host of other age-related issues including a heart-breaking case of depression as he’s watched the love of his life slip away, barely able to recognize him.

A few months ago I wrote an article for Feminine Collective entitled Creating My Father’s Legacy about my experience of making a documentary about my father’s photography and his life. In that article, I described the process of working on this documentary while my parents went through their decline that eventually led them to move into assisted living.  What I didn’t describe was the impact this decline has had on me.

I am basically their manager, interfacing between them and their caregivers, nurses and doctors, financial planner and others on pretty much every aspect of their lives. If they are running low on supplies I order them. If they get sick, I coordinate their care with doctors, hospitals, etc. If a bill needs to be paid, I’m the one that pays it. I also provide emotional support to my father, spending between 10 minutes to an hour on the phone with him at least once a day.

And I live 1600 miles away.

I fly out to Los Angeles every 6-8 weeks and those trips are spent doing the tasks I have been unable to accomplish from afar. I smile when people ask me how my vacation to LA was.

While in many ways I am very lucky to still have my parents with me, I am also aware that I am intensely grieving for two relationships I lost a very long time ago. When the balance shifted from being their daughter to being their caregiver, the emotional loss was huge. And over time, as they continue to decline, I seesaw back and forth between feeling blessed and feeling wiped out.

Our culture recognizes our grief when someone dies but there’s not a concrete paradigm for the ongoing grief of watching a parent age, seeing them lose their independence, their physical strength and eventually their mental capacities.

Part of my mother’s hospice program provides emotional support for her family. When speaking with the social worker recently, and sharing with her my complex feelings, her advice to me was “save yourself.”

This seems to be germane counsel. I often think back to the metaphor of what flight attendants say when preparing for a flight. “Please put your oxygen mask on first before assisting others.” I realize that if I don’t take care of myself, I will be useless to others. So I go to yoga, try to eat right and get plenty of rest. It’s hard to share with friends as I’m sure they tire of hearing about what I”m going through. I’m typically the person that gives the pep talk. I write articles like this that help me put my conflicting emotions into concrete logical thoughts that make sense to me. Sometimes it works. And sometimes, it doesn’t.

I think the one invaluable recommendation the social worker gave me was to not try to figure out how all this is going to end but to take small chunks of time and focus on that. She suggested I try to forecast and plan my parents’ future in three-month blocks of time. The anxiety of looking out over the next year, two or three can be overwhelming as I worry about every possible combination of events that could happen.

And for me, I try to take one day at a time.

 

Stefani Twyford

President and Founder of Legacy Multimedia, Stefani Twyford has more than 18 years experience designing, developing and implementing award-winning video biographies and tribute videos. Prior to starting Legacy Multimedia, she built and headed a successful Houston-based web design, e-commerce and marketing firm. With degrees in design, psychology and social work, Twyford also shares her knowledge about the importance and process of creating a meaningful legacy with her engaging presentations to various organizations. Twyford excels at helping people craft their stories and share their memories. Her commitment to high-quality work and customer service, and her gift for putting people at ease help her clients capture their stories in a way that will endure for generations. Her firm commitment to the arts, to the technology community and to women in business has helped many others and served as inspiration for the next generation of talented professionals. In 2012 she turned the lens on her own family and her father’s profile as a known street photographer. Her documentary “Martin Elkort: An American Mirror” screened mid 2014 at the Museum of Fine Arts, Houston followed by other screenings around the US and has won a 2014 Gold Remi Award for Best Documentary from Worldfest International Film Festival.

16 thoughts on “The Grief I’m Not Allowed to Have

  1. Leslie Butterfield Reply

    I am so touched by your writing and by the commitment you make to your parents Stefani. I have admired you from the day we met several decades ago and that feeling just grows. I’ve been caring for my 90 year old father this year too so I can relate very closely to your situation, although I am not 1600 miles away and my mother is not suffering along side my father. You are amazing. Thank you for sharing so the rest of us can better understand how it is. And good luck taking better care of yourself.

  2. Marty Buck Reply

    Stefani……so beautifully written. I can’t even imagine the emotional swings you must have been going through. You’re such a loving & devoted daughter. They are blessed to have you as their daughter!

  3. Cindy Cline Reply

    Thank you for writing about your thoughts and feelings. My mom is 94, she lived with me for 8 years until it became necessary for her to have more care. My heart grieves every time i leave her … every time i want to pick up the phone and tell her some exciting news … or sad news … only to realize she’s not able to comprehend. I understand and my love is with you! Cindy

  4. Drew SheldonDrew Sheldon Reply

    I know pretty well how difficult this journey is for you. I volunteered for a hospice for a couple of years. Dementia patients were always the hardest because it was always so clear to see how much had already been lost and how much they and their loved ones were suffering. I wish you and your parents all the best.

    1. Stefani TwyfordStefani Twyford Reply

      Drew, you are what’s called a Mensch. To volunteer in the care of our parents and loved ones is such a gift. I am truly amazed at some of the people that interact with my mother (and father) on a volunteer basis, and how loving and caring they are. It’s amazing. Thanks for all you do.

  5. Kitt O'MalleyKitt O'Malley Reply

    Stephani, I, too, am a caregiver to parents in assisted memory care. I very much identify with what you are experiencing. I keen silently and for how long I do not know. The grief sees no end in sight.

  6. doriowendoriowen Reply

    Beautiful piece, Stefani, I loved it. I felt like it was a pep talk to me. I care for my 85 year old mother and the responsibility is immense, while at the same time I grieve for the woman she once was. Nothing is easy, everything is complicated, but I wouldn’t have it any other way. I also loved your tribute to your father’s photography….what a wonderful daughter you are. I’m uncomfortable when people say this to me–but it’s true. And we do it out of love, making the compliment sincere. ~D.

    1. Stefani TwyfordStefani Twyford Reply

      Thank you Dori. That is what I’m good at, the pep talk. I feel like I’ve been doing that my whole life. Harder still to pep talk yourself. 🙂 Yes, the love is what drives everything isn’t it?

  7. Julie AndersonJulie Anderson Reply

    Stefani,

    If destiny is “real”, if all happens for a reason, THIS must by why we have become fast friends. You are the only one that I know that is experiencing “grief before it’s grief.” Because of you, I have strength. Because of you, I don’t feel like I am alone. Because of you, the world is a better place.

    I am so sorry – what else can anyone say? Wish I could give you a tight hug and hold your hand, make it all go away.

    x
    J

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