A letter to every woman holding someone else’s world together
I have been watching the women in my life lately. Not in a casual way. In the way you watch someone when you realize they have stopped sitting down.
My mother is caring for my stepfather. My sister is caring for her husband, who has Alzheimer’s. My sister-in-law is caring for her daughter. Three women, two who still have jobs. Three completely different lives. And every single one of them has done the same thing: she has quietly, without anyone asking her to, removed herself from her own list.
Not moved to the bottom. Removed.
And they are not alone. A friend of mine has been caring for her neighbor, a woman in her eighties who once asked, casually, the way you ask something you don’t really think will come to pass, if something happens to me, can you take care of me? That day is now. My friend is making medical decisions and financial decisions for someone else’s life, all while managing her own health, her grandchildren, her family. She said yes to a question she never imagined would change everything. And it did.
Another friend drove eleven hours, one way, every month, to check on her aging parents, overseeing their caretakers, managing their appointments, making sure things were running the way they were supposed to run. Then monthly became weekly. Then one parent was gone and then the other, and she barely had time to grieve before her husband’s health began its own slow unraveling. First one thing and then another, and the other has turned out to be an endless procession of appointments, surgeries, and procedures. She has been doing this, in one form or another, for years.
I see this everywhere I look. In my own family. Among my friends. In my community, where I have met women in the grocery store and the parking lot who are carrying this same invisible weight. And here, in this corner of the internet, where so many of you have shared your own stories in the comments, stories from across the country and around the world. This is not a small thing happening to a few women. It is happening everywhere, all the time, to women who will not tell you unless you ask.
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The Quiet Work Nobody Sees
A caretaker’s day does not look dramatic from the outside. It looks like a Wednesday. It looks like refilling an AM/PM pill organizer and folding the same fluffy white towels and answering the same question for the fourth time with the same patience she answered it the first time. “How do you turn on the tv?” It looks like researching doctors and navigating insurance claims and driving to appointments and sitting in waiting rooms with a three-year-old magazine she will never actually read.
It looks, from the outside, like nothing much is happening.
Everything is happening.
She is holding someone’s entire world together with her bare hands, and she is doing it while also making dinner. While also remembering the dog needs to go to the vet. While also pretending she is fine when her friend asks how she is doing, because explaining the truth would take longer than the coffee date allows, and besides, she does not want to be the one who always talks about hard things.
So she says she is fine. And she drinks her coffee. And she goes home and does it again and again, day after day after day.
When You Disappear From Your Own List
Here is what I have noticed about the women I love who are deep in caregiving. They do not complain. They do not ask for help, or if they do, they apologize for asking. They cancel their own doctor’s appointments to make someone else’s. They stop buying the lotion they love because they forgot they were a person who liked things. They stop reading as much, because by the time the house is quiet, they are too tired to hold the book. They stop dreaming about the trip, the garden, the project, the thing that used to make their eyes light up.
They do not lose themselves all at once. It happens one Wednesday at a time.
And no one notices because she is so good at it. The better she is at caregiving, the more invisible she becomes. The house runs. The medications are managed. The person she loves is clean and fed and safe. And the woman who made all of that happen has not sat down since six in the morning, and no one thought to ask if she has eaten.
I See You
So this is my letter. Not a letter with advice. Not a letter with five steps to better self-care or a list of resources, though those matter and you should find them. This is just a letter that says what I wish someone would say to every woman I love who is doing this work right now.
I see you.
I see you in the pharmacy line, in the waiting room, in the parking lot of the specialist’s office where you sit for an extra minute before you start the car because that minute is the only quiet you will get today.
I see you at the grocery store, moving fast through the aisles because the nurse comes once a week and that hour, the hour you thought would be yours, is the hour you use to do the errands no one else will do. I stopped a woman like that recently. She looked flustered. I asked if she was okay. She got tears in her eyes. No, she said. She needed to finish and get home before the nurse left. I have thought about her ever since.
I see you Googling symptoms at midnight. I see you learning medical vocabulary you never wanted to know. I see you becoming an expert in a disease you never asked to study, because the person you love has it and someone had to figure it out and that someone was always going to be you.
I see you making decisions no one should have to make alone, medical decisions, financial decisions, impossible decisions, for someone who trusted you with everything they had left to give.
I see you choosing patience when you are exhausted. I see you showing up soft when the world has made you hard. I see you carrying a weight that would buckle most people, and doing it with a kind of grace that does not feel like grace from the inside. From the inside, I know it just feels like getting through the day, and sometimes it is crying in your car when no one is watching, for the person you are caring for, for the lost future, for yourself as time slips away.
But from where I am standing, watching the women I love, it looks like love in its most undecorated form.
Come Back to the List
I am not going to tell you to put yourself first. I know you, and I know that sentence lands like a joke when you are responsible for someone who cannot care for themselves. First is not realistic right now. I know that.
But I am going to ask you to put yourself back on the list. Somewhere. Anywhere. Even at the bottom, which is where you started before you disappeared from it entirely.
Buy the lotion. Make the cup of tea in the cup you love, not the mug closest to the front of the cabinet. Call the friend. Sit on the porch for ten minutes with nothing in your hands. Read one chapter before you fall asleep.
These are not luxuries. They are necessary. The care you give someone else has to come from somewhere. Make sure you are still one of the places it comes from.
The women I love who are doing this work are among the strongest people I know. My mother. My sister. My sister-in-law. My friends. They would never describe themselves that way, and that is part of what makes it true. They do not perform strength. They just show up, every single day, and do what needs to be done.
But showing up for someone else was never supposed to mean disappearing from your own life. You are still here. You are still a woman with a name and preferences and a favorite season and books you want to read and places you want to see. Caregiving is something you do. It is not all of who you are.
If You Know Her
And if you are not the caretaker but you love one, this part is for you.
If you know one of these women, and you know she will not put herself back on the list no matter how many times someone tells her to, then maybe, just maybe, put her on yours.
Your prayer list. Your coffee list. Your Tuesday afternoon phone call list. Your “I am going to do one small thing for her this week” list.
I know. You are busy too. You may be caring for your own person. You may be stretched in twelve directions yourself. I am not asking you to add a project. I am asking you to add a person.
A meal dropped off without being asked for. A card in the mail that says nothing more than “I see what you are doing and it matters.” A book you loved, tucked into a bag with a note. An hour of sitting with her person so she can sit with herself. Or picking up and driving that person to an appointment, a class, or an activity, one less thing on her list.
I recently sent my mom her favorite shampoo, her conditioner, and three bottles of hand soap. She was elated. Not because it was extravagant. Because in this season of her life she forgets to care for herself, and someone remembered for her. It was easy for me to do from a few states away, and it told her something no phone call could have said the same way: I am paying attention to you, not just to the person you are caring for.
The caretaker in your life will not ask for this. She will not put it on a wish list. She probably will not even know she needs it until it arrives. But when it does, she will feel, maybe for the first time in a long time, like someone is taking care of her.
If you are a caretaker reading this, I want you to know something. You are not invisible. Not to the people who love you, and not to me. This ordinary, extraordinary work you are doing with your days, this work that will never make a headline or earn a promotion or show up on a résumé, it is the most important work there is. And you deserve to be seen doing it.
Are you caring for someone right now, or have you walked that road before? What is one thing you have let go of that you would like to find your way back to? I really want to know.
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For every woman who has been last on her own list. Dear Woman Who Has Been Last on Her Own List
Wow Elizabeth this so resonated with me and brought tears to my eyes. As I’ve mentioned before, I cared for my dad for 7 years and even though he was living in a facility through all levels until the end, it was exhausting. I remember one day laying on the bed so stressed and tired I told my husband I’d be ok if I didn’t wake up the next day. But now I’m free and I have two friends who are in this role. One whose husband is still at home with progressing Parkinson’s and the other is caring for her 90 something dad after caring for her deceased mother with dementia. Her entire retirement has been caregiving. She won’t even leave him to get a coffee with me. She’s very stubborn and won’t hire a caregiver to give her respite. We talk on the phone often and I listen.
One thing that helped me was being able to join a yoga studio for twice a week classes. The women I met there in my gentle yoga class were so wonderful and now 12 years later we are a tight knit group and truly care about each other. Your post has made me rethink about doing more for my friends beyond just praying. Thank you for this post.
Nanci, I remember you shared your father and the pain of having him in a home during Covid. Thankfully you were close by to see him and care for him for 7 years. Your friends are blessed to have you, you are empathetic and sympathetic to their plight. It is never easy to be a caregiver, there is so much to it, including finances, family history, etc. My mother has a friends, whose father tried to kill her 3 times as a child, he clearly had mental illness. And yet this woman cared for hime almost his entire life and I will tell you, he was never nice to her. EVER. Her continually berated her, said horrible insulting things to her but she always said God wanted her to care for her dad.
Thank you for sharing your story.
Thank you Elizabeth. This is a heartfelt tribute to all the people in the world who step up daily to do for the ones they love. I have been blessed with the opportunity myself and it was such a storm of doing and being that years later it is hard to even remember the day to day. But there are moments that stand out. And they are with me forever.
Marsha, thank you! There are women and men, young and old who step up daily not just for family but friends and strangers. While in the storm it is difficult to see the memories and blessings, of caring for your loved one.
Elizabeth, you are so kind and thoughtful. Thank you for bringing this to my attention. My daughter and her husband, who are in their 40’s, have a friend who is 71. He is a single man with no family. He recently had surgery for kidney cancer and went into cardiac arrest. They transferred him to a hospital 2 hours from where they live. My daughter is his power of attorney and had to make difficult decisions for him when he was on life support. After a month, thankfully, he is recovering. I am so proud of my daughter and son in love. They are exhausted from travelling every 2 days to be with him and from all the worry and stress, but have never complained and have kept their sense of humor. I always tell my husband not to get aggravated by drivers on the road. You never know what they are going through. I will pray for all caregivers, thanks to your post.
Ellen, it sounds as if you have raised a kind, thoughtful and compassionate daughter. There are many in this world that would never take on the task and care of a friend and neighbor. How frightening to go for surgery for cancer and have a heart attack. Thank God your daughter was there to make the decision for this man. And to travel 2 hours to see him.
I will keep your daughter, son in law and their neighbor in my prayers.
Have a lovely week.
Thank you, thank you from the bottom of my heart. I won’t comment here on what I am dealing with in regards to caregiving, it has been very hard. Reading you beautiful words has made me cry, you are truly a wonderful soul. Bless you.
Rita, you are so welcome. I hope that whatever you dealing with in terms of caretaking that you find some solace, help and kindness from friends and family. Remember to leave a little energy in every day for yourself.
Take care and bless you.
What a timely and welcome post for me. Next Monday I will move my 83 year old husband of 52 years into a memory care and assisted living facility. I chose a ten resident private care home where I feel he will be more than a room number. I can no longer care for him at home with all the EMS calls for falls and my inability to leave him for long. Yesterday my dermatologist commented on a large bruise from a fall where he took me down with him. Intellectually I know this is necessary but emotionally it feels like a failure. It seems the availability of a room at this facility at this time is a heaven sent blessing. I have three supportive sons who agree with my decision. So next week begins the life of one. So many adjustments to make. Thank you for seeing me today.
Susan, thank you for sharing your story. I cannot even imagine what you are going through. But I am absolutely sure, without a doubt that you did everything that you could for your husband. Dementia and Alzheimers is a brutal disease and the effects on the person and everyone around them is along slow painful experience. It sounds like the home that you found will be a good place for him and give you a little peace of mind knowing that there are 10 people and that he will be looked after well.
I volunteered for 2 years, there are wonderful people that work there and care for our loved ones. I hope the facility is close and that you can visit often and have peace of mind knowing that your husband is safe.
I see you, and will have you in my prayers as you navigate a new “normal.” Give yourself grace and put yourself at the top of the list, you deserve to it.
Fondly,
Elizabeth
How can I send this to my dear friend. She just finished taking care of her mother with dementia when her husband developed Alzheimer’s and is going down fast. She has her own health issues and I worry for her.
Cristi, you could copy and past the blog link and then she could read the post.
Thank you for sharing.
Thank you for this thoughtful post.
Besides removing caregivers from the list, caregivers often deal with family drama, blame, and misunderstandings.
Family that stands on the sidelines often blames the caregiver for healthcare decisions, financial decisions, and -the worst-dealing with wills and trusts.
Caregivers often are the ones who have to clean out closets, garages, and documents. Caregivers make the toughest decisions without siblings knowing all of the facts, recommendations, and reasoning behind them. Resentment builds, and relationships are tested. The caregiver is the one who carries all of this- women are such badasses! We quietly and with grace carry the weight of the world. Cheers to women.
Sandy, all of this is a side of caregiving that I forgot to mention. There are the sideline siblings that think the parents are “not so bad” or completely shutdown and say, I’m a man, mom would not want me giving her a shower.
There are houses and garages and storage units filled to the brim with “treasures” and more often than not there are siblings and people in line to take some of them but they do not want to do any of the work to clean and get rid of them.
Sadly, there are families that split over caretaking, money and all of the rest.
Women are banasses! We carry the weight of the world, and our family and we do it with a smile and sometimes a tear.
Thank you for your comment.
Thank you Elizabeth for this post. It is so timely. I have have had times when I was the care taker and no one sees the toll it can take on the care taker. You are such an amazing young woman who has the ability to see beyond just the surface.
Claudette,
You are so right, so many do not see the toll it takes on the caretaker. And I also do not think that people realize the work, bone weary work it takes to be one. It is more than taking someone to the doctor, making a meal, it is all of that and more. You are literally keeping someone alive.
Thank you for your kind comment.
Have a wonderful week.
What a kindness to have asked that woman in the grocery if she was ok vs just walking by as if she were a nut case…I often hope that I say the right thing..ask the right question and take the time to see those who need a kind word or someone who will listen…
I pray for that often…
A wonderful post Elizabeth. You realize many of the bloggers don’t ever respond when you comment…you do…bless you:0)
Lori,
In the past I would never have said a word, but over the last few years I feel as if there so many “walking wounded” all over the world. And that particular lady, there was something about her that I was drawn to. She looked at the end of her rope, frantic, and so very sad. We actually spoke for about 15 minutes and I hope that I made a small difference in her day.
Thank you for your kind comment. Have a lovey day.
Thank you for this. I am the caregiver right now, but still working. (I’m a teacher, so I’ve had the last few weeks off, but every day is consumed by caregiving.) My friend group has been a lifesaver for me. We meet up for lunch (yay summer) or at somebody’s house. They check in on me. I don’t ask for a lot of help from others, but it’s a relief knowing that my friends will drop everything to get together.
Kim, I commend you first for being a teacher. That is a difficult job and a demanding job to go to each day. There are a lot of children and young adults that depend on you. Then to go home after a long week and be a caretaker is even more difficult.
Thank God you have an amazing group of friends. Although you do not ask for help, I hope you know that it’s ok to ask. I think you will find that your friends would be happy to lend a hand in any way.
Thank you for sharing. I will keep you in my prayers.
Dear Elizabeth,
Wow, an excellent post. Thank you for sharing about your mother, sister, and friend.
I have witnessed my sister-in-law, sister, and be caregivers that just about broke them on so many levels. All their stories are long. Like you I appreciate through observation what it takes and the 24/7 sacrifice it takes and the endless tasks that need to be attended to. The sad thing is in some cases their health gets compromised in the process of giving themselves away.
As a young girl I took care of my mother it was done through love, worry and never knowing if I would come home from school and find my mother had passed away. I was responsible little girl and loved my mama dearly. It took away from my being a “sandbox baby” and enjoying a more normal child upbringing. My mother was not able to ever be present for any important events in my life. It created a hole of loneliness in my heart at times. Thank goodness my grandmother was able to pick up some of those pieces. My mother lived the last eleven years of her life in a care home. Going to visit was so hard, seeing her at the door in her wheel chair smiling and waving so long. Not knowing I would see her again was hard. She lives in my heart forever. My mother, my best friend.
Love everything you share.
Have a great week, you are special.
KAtherine,
Thank you for sharing your story. How difficult it must have been emotionally, psychologically and physically, to care for your mother at such a young age and to always be on alert that she may not be there when your came home each day. It makes me want to cry thinking about it.
Thank God for your grandmother, at least you had a mother figure in your life.
11 years in a care home is a long time. I hope that she found some happiness there. I am sure that she is in your heart and you in hers as she looks down from heaven.
Have a beautiful week my friend.
I would like to be able to read a book.
what a beautifully written post, Elizabeth, thank you for writing it and for sharing your good heart
Christina, thank you! That is very kind of you.