Welcome to What Nobody Tells Us! A special shout-out to all the moms reading this.

I was thinking of you on Mother's Day with the acknowledgement that Mother's Day can be really... complicated. It can be equally filled with joy, pain, grief, happiness, love, hope, and so much more. For those who celebrated, I hope it was a beautiful day. For those whom Mother's Day is difficult, I send all my love and support.

As I think about the responsibilities of being a mom, I can't help but recognize the profound connection it shares with caregiving, which is this week's WNTU focus. The unconditional love, the selfless sacrifices, and the unwavering commitment that define a mother's role are the very same qualities embodied by caregivers. In this week's newsletter, we're exploring the devastating yet enlightening world of caregiving, shining a light on the stories and experiences that often go untold. Including mine.

As many of you know, I have been caring for my husband, Bryan, for the past 15 years during his battle with brain cancer. This long-term experience has opened my eyes to the incredible challenges, joys, and profound life lessons that come with being a caregiver.

In this week's episode, I had the privilege of talking with Aisha Adkins, a remarkable fellow caregiver and advocate who shares her 10-year journey of caregiving for her mother. Born prematurely and no stranger to health challenges herself, Aisha became the primary caregiver for her mom, who was diagnosed with frontotemporal degeneration (FTD) -- the same disease affecting actor Bruce Willis. Her story is one of unwavering love, unimaginable sacrifices, and the power of embracing life's most challenging moments.

While Aisha's story and mine are different, our caregiving experiences are very much the same. We share so much depth and advice from our experiences as caregivers:

🫶🏼 How To Support the Caregivers In Your Life

🫥 Invisible Sacrifices: Putting Your Life on Hold

😔 The Hardest Part: When No One Understands

😢 Anticipatory Grief aka "Mourning the Living"

💔 The Toll on Friendships: Caregiving Changes Everything

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Guest Spotlight: Aisha Adkins

Caregiving Advocate & award-winning writer & speaker

How To Support The Caregivers In Your Life

Reach out regularly, even if it's just to say, "I'm thinking of you."

Caregivers often feel forgotten and isolated, so knowing that someone cares can make a world of difference. Even more critically, check in when everyone else has disappeared, e.g. after a diagnosis or a funeral. Be there with genuine care after everyone else has moved on.

Offer specific help, such as running errands, preparing meals, or providing respite care. Caregivers often struggle to ask for help, so taking the initiative to offer specific assistance can be a game-changer. Don't ask us to think of what we need, as that adds another to-do on our never-ending list. Instead, give us three options and let us choose. If we can't choose, do it for us. We'll appreciate it later, I promise.

Listen without judgment. No, really, don't judge. Grief can make you say terrible things.

Caregivers need a safe space to express our emotions, which can range from grief and anger to guilt and exhaustion. Offer a listening ear and validate our feelings. Don't be afraid to join in on some gallows humor, even if it's not in your nature. Our brains go there all the time anyway, so you might as well laugh with us.

Educate yourself about our loved one's condition.

This is a game changer and the hallmark of a true friend. Taking the time to understand the challenges we face can help you provide more meaningful support and avoid unintentionally hurtful comments or assumptions. Bonus tip: Look up and share helpful research or resources.

Be very self-aware in conversations.

Be self-aware in your conversations with a caregiver, especially when it comes to complaining about mundane aspects of your life. Caregivers' brains are on overload; we don't have the mental fortitude to take on others' drama or problems, no matter how much we may want to help or would love a distraction from our own life. Sweating the small stuff is a privilege caregivers don't have, but would give anything to worry about, e.g. Bad traffic, a delayed flight, a fight with their healthy partner, annoying habits of their healthy kids, etc.

Invisible Sacrifices: Putting Your Life On Hold

Caregiving often requires individuals to make countless sacrifices that go unnoticed by others. People can't possibly understand what's happening behind closed doors, and the ways you must change, pause and adapt your life to your new caregiving reality. Here are just a few of the ways putting your life on hold can impact a caregiver's well-being:

Heavy Emotional Toll: Depending on how long someone is required to be a caregiver, emotions like guilt, resentment, and even a sense of loss build as they put their own needs and desires on the back burner. It's so difficult to feel guilty for wanting a normal, healthy life, while at the same time loving the person in front of you so much.

Intellectual & Educational Stagnation: With limited time and energy to devote to personal growth and learning, caregivers often feel intellectually stifled and disconnected from their passions and interests. The same goes for caregivers who are forced to forgo or postpone educational opportunities may feel left behind and struggle to regain momentum in their academic or professional pursuits. Ironically, these hobbies and educational pursuits are the things they need to experience most for the sake of their mental health.

Physical Strain - Caregiving Literally Hurts: The demanding nature of caregiving can take a physical toll, leading to exhaustion, neglect of personal health, and an increased risk of chronic health conditions. Stress from caregiving has landed me in the hospital three times. Most recently, helping Bryan balance on wet cobblestone streets over the 2023 holidays pulled both my scapula and hip muscles. I'm still trying to heal them five months later.

Mental Health Struggles: The stress. So much stress. Add to that isolation and the emotional burden of caregiving can contribute to mental health issues like depression, anxiety, and burnout, especially when there's no end in sight and no one else truly understands what you're going through.

The Hardest Part: When No One Understands

Here's a sad truth: It's often easier for caregivers to self-isolate when their loved one's illness or condition isn't understood -- or worse yet -- visible to the outside world. The former is/was my case with Bryan and the latter was Aisha's case with her mother, as FTD doesn't necessarily make the patient "look" sick. If it's hard to understand why a caregiver in your life is isolating, here are some elements that may help explain their struggle:

Anticipatory Grief aka "Mourning The Living"

"I've heard anticipatory grief can be worse than actual grief in this type of instance, because you've had so long to run through the worst case scenario in your mind. And then once it actually happens, as a caregiver of someone for a very long time, it's actually, it's, there's definitely grief, but it's not like tragic, traumatic grief. It's more like acceptance and relief mixed with love and loss." - Christie Bishop to Aisha Adkins

Anticipatory grief is a unique and often misunderstood experience that many caregivers face. When Bryan was at his sickest points in 2009 and again in 2020-21, I would find myself sitting next to him or across from him, completely consumed in thought about life as a widow. Then I would snap out of it and remember, he's sitting right next to me, fading away. For caregivers, anticipatory grief is a mindf*ck of epic proportions, and it happens often:

Here are some of the things nobody tells you about anticipatory grief:

💔 It's the grief you feel when you know a loved one's health is declining and that you will eventually lose them, even before they pass away.

💔 It can be more challenging than the grief that follows a loss because it is ongoing and can last for months or even years.

💔 Caregivers may feel like we are mourning the loss of the person we once knew as our loved one's personality, abilities, and memories change due to their illness.

💔 It can be an incredibly isolating experience, as caregivers may feel like they are losing their loved one bit by bit, while the rest of the world carries on as normal.

💔 Anticipatory grief can bring up guilt, as caregivers may feel like we're somehow betraying our loved one by grieving their loss before they've actually passed away.

💔 Caregivers may also feel guilty for experiencing moments of relief or respite, knowing that our loved one's suffering will eventually come to an end.

The thing I came to realize is that it's important for caregivers to know that anticipatory grief is a normal and valid experience, and it's okay to feel a mix of emotions, including sadness, anger, fear, and even relief. When I meet someone experiencing anticipatory grief, I make sure to offer my support, understanding, and practical help, and let them know that their feelings are valid.

The Toll on Friendships: Caregiving Changes Everything

Others, however, show up when things seem to get "better" but don't have the emotional capacity, empathy or maturity to really be with you during the lowest times. I've coined these people the "good time friends," and their boomerangs can be more hurtful than those who never showed up in the first place.

That said, we're all on our own journey and as Bryan says, we can't blame anyone for their reaction. For every friend that can't come along with you on your caregiving journey I've realized, other angels take their place. Unsurprisingly, they're often people who have been through significant trauma themselves and offer practical/emotional support, and show up in ways you never expected. So if you have a friend who is a caregiver, see section #1 above. Don't be afraid to reach out and offer your support, even if you don't know exactly what to say or do. Sometimes, just knowing that someone cares and is thinking of them can make all the difference in the world.

Aisha's Final Word on Caregiving

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