A Letter to Myself

The suitcase by the door.

I lost my husband to Alzheimer’s over seven years — four of them as his primary caregiver. Somewhere in those years, I stopped recognizing myself in the mirror. Today I write The Tender Warrior, published three times a week for anyone who has loved someone through loss and is ready to belong to themselves again. Because after caregiving, coming home to yourself is not the end of the story. It is where the story begins.

www.vickitull.com

September 2023.

Dear Vicki,

You just got home from Venice.

Put down the suitcase. Leave it by the door. I need to talk to you.

I know what you’re feeling right now. The guilt is sitting on your chest like something physical. You keep replaying it — the plane, the seatbelt, the look on his face. The way the Venice crowds overwhelmed him before you’d even left the airport. The 90-degree heat. The streets you’d imagined walking together, hand in hand, the way you used to. The hotel room where he spent most of the time in bed while the Adriatic glittered outside the window, indifferent and beautiful.

You went because you wanted to feel normal again. Husband and wife, traveling together, the way you were in Alaska the year before — when he stepped off the plane and became himself again, adventurous and alive and fully there. You wanted that man one more time. You needed that man one more time. And so you booked the trip, and you hoped, and you got on the plane.

I can still feel the guilt and regret and disappointment.

Know this: you did not do this wrong. You did it out of love. Out of the very human, very reasonable refusal to let go of something before you absolutely had to. You were not in denial — you knew things were changing. You just weren’t ready to stop reaching for him. That is not a character flaw. That is what it looks like to love someone the way you love Lee.

But I also want you to be honest with yourself about what this trip showed you, because you already know it and you’re trying not to look directly at it.

This was the last one.

Not because you failed. Not because you chose wrong. But because the man who bristled against the seatbelt on that plane is telling you something about where he is now, and part of loving him — the hardest part — is learning to hear what he’s telling you even when he doesn’t have the words for it anymore. The cramped seat terrified him. The crowds were too much stimulation. His world is getting smaller and no amount of love or planning or hoping can make it larger again. That is the disease. That is not you.

The guilt you’re feeling right now — hold it gently, but don’t let it move in permanently. Guilt has a way of masquerading as love, of convincing you that punishing yourself is the same as honoring him. It isn’t. You took him to Venice because he was the love of your life and you weren’t ready for the adventures to be over. There is nothing to be ashamed of in that. The regret is real and it is yours to feel. But that is not the whole story.

This is important for you to know.

You have been showing up for Lee every single day with more love and steadiness than most people will ever be asked to summon. You have been his wife, his companion, his anchor, his calendar, his safety. You have navigated behaviors and moods and moments of confusion and moments of terrible clarity — his and yours — and you have done it without a roadmap, largely without help, largely in silence. That is not nothing. That is everything.

And now you are home from a hard trip, sitting with a broken heart, and I need you to do something that does not come naturally to you.

Let people in.

Call the friends who have known you for decades. Not to perform okayness, not to give them the edited version — the real one. Tell them what Venice was. Tell them what you’re carrying. The research will tell you that caregivers who maintain connections outside the caregiving role fare better, stay more resilient, and show up more steadily for the people they’re caring for. But forget the research for a moment. You need your people right now. Let them be there.

And start building your network — not someday, now. Medical professionals who can explain what’s coming. Care professionals who’ve walked this road with other families. People who can see Lee in the moments you can’t. You have been trying to solve this alone, and Alzheimer’s is not a problem that can be solved alone. The strongest thing you can do right now is ask for help.

One more thing.

There will be more grief ahead — I think you already know that. The trip to Venice is not the last loss. There will be the day his needs become more than you can meet at home. There will be the day you realize you are his caregiver now, not his wife, and you will write that in your journal in the specific, precise language of someone trying to make sense of the unspeakable. There will be the day they tell you your presence upsets him and it’s better if you stay away.

Each of those days will ask everything of you.

But here is what I know from where I stand, looking back at you sitting there with your suitcase and your broken heart and your jetlag:

You are going to be okay. Not untouched — you will be changed by this, permanently and in ways you can’t yet see. But changed into someone more patient, more open, more clear about what matters than the woman who booked that flight to Venice hoping for one more normal trip.

The love you have for Lee is not diminished by what this disease is taking. It is proven by it. Every day you show up — every seatbelt you gently fastened, every moment of confusion you quietly smoothed over, every time you answered the same question again — that is the love. That is what it looks like now.

Start by trying to put down the guilt. You took him to Venice because you loved him. He knew that. Even now, even as so much slips away — he knows that.

Come home to yourself. Your people are waiting.