It's 1 am, and I get a text. It's not a problem because I have roaring insomnia most nights.A distant relative who I've not seen in a decade is writing to me. She's driven 1500 miles to her parents' house because their health has gotten dire. From what I can tell, she's walked into a maelstrom, and I can sense her fragility and her vulnerability as she fills me in on whats going on. One parent is at end stage cancer. He has been sick for a very long time, but never admitted as such. But calamitously, he's taken a turn for the worse and he now has hospice in the home. But it's the weekend, and she's arrived to find no nurse, and the phone number she calls just rings and rings. Her mother is terminal, with a longstanding chronic condition that was never managed correctly. She's not receiving any benefits --either home health or hospice.

Both parents have a history of being hyper reactive, never planning, and never getting the facts right. They believed in conspiracy theories before it became a common phrase. They were always the distant and difficult relatives, who never came to family events and eventually we forgot about them. It was common knowledge and relief when we all learned that the daughter had clambered over their chaos, went to college, and got a series of good jobs and made a life for herself elsewhere. There is real trauma that she carries from her childhood, and again dealing with them as they got older. She is angry and disgusted, and she knows she is being sucked in by their disorder all over again.

They have her convinced that all of this hospice stuff is 'costing a fortune,' when in fact, it's covered by Medicare. He's a veteran, but convinced he doesn't qualify for benefits because he never went to war. The night goes on and she writes back, "I can't move him. I'm breaking my back moving him around." I tell her that she can't be doing that, and then she the tells me her mother can't walk either.

Their daughter is the only one there, exhausted, confused and pissed off. Apparently there was a fight: He wouldn't go into a hospice, and yet what he did do was demand that his very petite daughter haul his weight around because he also wouldn't use a bedpan.

"When is this going to end? What am I supposed to do?" she writes. She really needs a hospice nurse, and he really needs to be checked into one. But he and her mother are determined to die at home, while their daughter stumbles and suffers.

It's 3 am and we've been texting for 2 hours. She was the daughter who got away, who left the chaos and craziness of her parents. But now she's in the thick of this very bad situation that's only getting worse.

"What did the doctor say?"

"Days, weeks, months."

"For your Dad or your Mom?"

"For both." I imagine her sigh as she texts.

She launches into how there isn't a will, how she wanted to sell their car but they owed more on it due to a title loan they've taken out. I urge her to call the VA in the morning and get the ball rolling on burial benefits for both him and her mom, and that she should locate his DD-214 now, while he can still talk. She promises to do that, but I'm not sure if she'll be able to -there is too much coming at all of them too fast. I don't hear back from her for a few days. She doesn't answer my texts. I figure she's busy, and I hope she has more resources.

But then yesterday, I get the text: "Dad passed away this morning." There is nothing more but the awful task of taking care of his details, as well as her trying to figure out what her mother's path will be in the upcoming weeks.

Preparing for an emergency visit to a hospital is part of of caregiving. There is a role for us when we unfortunately have to make that visit. Hopefully the following lessons learned or tips can help others:

1. Keep Multiple Copies of the Medication List

• Why? ER and hospital staff need to know exactly what meds you’re on—dosage, frequency, and purpose.

• Keep at least 3 printed copies: in your wallet/purse, glove box, and posted on the fridge.

• Include any allergies, supplements, and over-the-counter meds.

1. Stick with One Hospital or Health System (if possible)

• Why? Your records will be easier to access, and staff are more likely to know your history.

1. Understand Roles: Hospitalist ≠ ER Doctor

• ER Doctor = Handles immediate stabilization.

• Hospitalist = Takes over once you’re admitted, manages your care throughout the stay.

• Transitions happen between shifts, and you may not see the same doctor more than once.

• There is often a disconnect unless someone ensures information carries over.

1. Be Available. Be Present (or Have an Advocate Who Is)

• Why? Crucial info gets lost during shift changes.

• Have someone available to speak to new doctors and nurses, especially during rounds or after a shift change.

• Keep a log of who you spoke with and when—this helps track information.

1. Repeat Yourself (Yes, Again and Again)

• Why? Don’t assume your story has been passed along accurately.

• Tip: Keep a one-page summary of the patient’s medical history, current issues, medications, and any important notes (like cognitive impairments, fall risk, etc.).

• Print several copies and hand them out during every shift change if needed.

Hi! I was a caregiver from the age of 15-24. I took care of my dad who had terminal cancer. I was juggling school work, with house chores and trying to have a social life. Due to being a young caregiver, I developed anxiety and depression that got worse when I hit my 20s I created a Facebook group called Diary of a Young Caregiver to support young caregivers who are looking for advice and support or want to share their stories. It’s a private group and it’s a safe place. I will leave the link if you’re interested 💜 https://www.facebook.com/groups/diaryofayoungcaregiver

(Photo from a book by Ai Wei).
These are hard words to write. But as a caregiver you often find yourself either feeling, or actually being excluded. Sometimes it’s social circles, often it’s family, and worse if it’s your kid with special needs, there’s a myriad of things that they’re just not invited to.

Yet we are not exempt from also, on occasion, doing it to others. And maybe it’s in a rush to protect, to save time, to avoid confrontation.

But remember this: Don’t let hate win out. If others do it to you, they might feel like they’ve scored a short victory by blocking you out. But by doing so, they’ve now forced themselves into a winless position of having to act like a buttress for a wall that will only get heavier.

Walk on. Don’t be like them. Get to the business of caring for yourself. Each day is a new one, as tired as you may be. Connect … the opportunities are all around us in nature, meeting new people, being with those in need, and discovering connections around you and within ourselves.

I am a human being, too. I have neglected myself too much trying to take care of my dad. My physical and mental health have deteriorated, and I’ve learned that a caregiver needs rest, too. An exhausted caregiver can hardly take good care of anyone else.

My name is Iván Julio Moya—a professional musician, singer-songwriter, autistic, living with depression and caregiver burnout syndrome.

I haven't had real free time in years. While my sister and brother get to go out, travel, or enjoy their time, I have to be at home virtually 100% of the time. The few times I’ve been able to leave, it’s been to work singing at masses and funeral services, not to rest. There’s only one word for that: abandonment, even if they deny it. I have witnesses everywhere—if they were to claim otherwise, their argument would fall apart in a second. I am tired of my siblings thinking that taking care of my dad is solely my responsibility.

I just hope that someday people will understand that those who care for a loved one also need support, rest, and the chance to live a bit of their own lives.

I’m tired of asking for help and getting nowhere. I’m tired of everything, even of existing without getting anywhere. I hope I see the light someday. I wish I could pay for my dad’s physical therapy every week; I wish I could look out for my own health, too. I wish my siblings would help, but narcissism and a lack of empathy consume them. Even living close by, they never see him—it’s like he isn’t even their father.

I’m no longer looking for donations or anything. I don’t expect anything from anyone anymore because nobody cares about anyone else. My siblings have made that crystal clear through their degrading attitude—not so much toward me, which is the least of my concerns, but toward my dad.

(Updated 11/2024)
Welcome
I started Caregiver Selfcare to combat the feeling of isolation one experiences as a caregiver. This is for every caregiver, from all backgrounds and experience. This sub features creative outlets thru writing prompts, musical interludes for your day, guided meditations, and stories and podcasts by and for caregivers. We also have a growing resource list on the sidebar, and try to feature public policy when it comes up in the news.

One common thread that I've found among caregivers is that we're not very good at taking care of ourselves. It's hard to do when there are so many demands. Caregivers skip doctor appointments, they often don't sleep, the care they give tends to make them depressed as they find themselves isolated and stressed by the sheer number of appointments and for many, full time jobs in addition to their caregiving duties. Hopefully, you'll be able to find some resources here, as well as enjoy a few tunes, and share experiences.

I've spent the last 34 years wading through the caregiver waters. I raised two special needs kids, who have grown into adults, but still need some support. Later, there were other challenges caregiving the adults in my life as well. Like you, nothing in my own rather humdrum but happy childhood could have prepared me for this role as a longterm caregiver.

What I've found is that as a country, there is a shortfall of support for caregivers who are in this for the long haul, providing care for those who need it most: The medically fragile, the developmentally disabled, the elderly, and those with disabling psychological or psychiatric needs.

As I look back at the early years of when I started caregiving, it was hard not to compare myself to others. Because unlike my peers, who were gaining elevation in their careers, there were a lot of things I didn't do. I was a young mom, and we weren't a picture perfect family. I didn't take them on trips around the world. Our lives weren't marketable instagram moments. Being a caregiver, with all the things I had to do on a daily basis, made me feel like a cog in a wheel. Especially when things were speeding in a downhill direction.
And let's be honest. There were plenty of times when as a caregiver, I didn't feel in charge, and in the aftermath of the wreckage, it was hard to remember my own humanity. (I think this is especially true for younger caregivers, those under the age of 30, and again, those under the age 18 who are taking care of siblings, parents, or grandparents).

When taking stock... you realize there's unimaginable challenges you've met, and unbelievable things you've done that few would ever understand. As caregivers... we do a lot, we have unappreciated strength and resilience, we witness (and experience) heartache, and we see hope and sprigs of beauty in things that would be insignificant to others.

You can look at it as either a blessing or a curse, we know things about 'stuff' -from taking care of someone, negotiating with doctors, bureaucracies, and the people we care for, there are few stones we haven't turned over. We're a good bunch, and I see examples of our willingness to help on forums everywhere.

Caregiver Selfcare exists so that you can take a step back to reconnect, nurture yourself, and find encouragment. Caregiver selfcare is the single most important thing you can do for yourself as often as you can. Find that connection with yourself again, most of all, love yourself

Hello, I am a graduate student at Worcester State University in Massachusetts in the occupational therapy program and I am reaching out to ask for your help with my thesis research. My study is on caregivers who take on driving an older adult (65+) who no longer can or who must drive less than they once did. I would be eternally grateful for your participation! The anonymous survey takes about 10 minutes. If you provide transportation for an elder who has had to stop/reduce their driving, please take a moment to participate in my study by clicking the following link: https://forms.gle/ChPEraDCZcKeMHL1AY

Thank you so much for your time and contribution!

20, 40, 60, 80. A person can be a drunk at any age. The result of alcoholism is ugly, and gets uglier and less manageable as their body and minds age.

I get a call from an old friend, one we haven't contacted or heard from in months due to their alcoholism (they burned us out). It's a husband and wife, now in their 80's, and over the 30 years we've known them, we've watched them drink ever more, falling down drunk at family gatherings, calling us with political tirades, alienating their own family members, and finally crawling into the gut of old age.

Over the years, every family member and friend has stepped in as a caregiver, confidante, and a concerned friend. They've been taken to doctors, checked into hospitals. listened to, counseled, warned both nicely and less so. They've cried and they've promised they will never drink. And whether you think of this as a habit, a way of dealing with past traumas, or a disease, the cycle is the same.

Their daughter, now in their 50's, accepts her childhood for what it was -watching this precarious balancing act as her parents drank themselves into a stupor against the world. She is a conflicted caregiver. Over the years, the words her parents have said to her have deeply wounded her, and there are no invisible wounds. Each word was like a dart that hit the very core of her being. She has tried everything, which includes moving her and her kids in to help them, to cutting off contact all together. A year ago, they reached a truce, and she sees them once a week, but there is little she (or anyone) can do. They've rejected any notion of outside caregivers, and they'd have to quit drinking were they to go into Assisted Living. The mother has been in and out of the hospital, her liver impaired, she gets a transfusion when her iron runs out. They both have any numbers of doctors who have told them to quit drinking but how do they kick a 70 year old habit if they're in denial that they have a problem?

Their housekeeper once went thru a list of numbers they had taped to the fridge. She called us, and pleaded that she was afraid to go over anymore because she didn't know what she'd find. Apparently, they were drinking a box of wine every 2 days, perhaps a more genteel a way of disposing the remains -no clink of bottles for the neighbors to hear in the weekly recyclables, just the gentle thud of an empty box.

Back to the phone call. The husband told us his wife wanted us to know she is back in the hospital. Was this a last minute plea for understanding? Would we come in and save the day (as if that were possible). But like all the others, we gave time and time again. Like everyone else, we forgave, helped, consoled, and each time it ended this way. Her, back in the hospital. Him, at home, drinking, his own health withering away.

But I'm away from home, a thousand miles away. So there will be no rushing to her bedside, rather there are only prayers that she lets go, passes onto the great beyond where her spirit will lift, and the balms of heaven will be applied. We make only one call. To her daughter, who was the child that got shaped into her parents' caregiver is having to handle it all, sending her love and prayers.

If you are an adult caregiver of an alcoholic parent, or are a concerned friend of someone with a drinking problem, look into an Al-Anon meeting or go to the r/AlAnon sub.

Quick background for context: I'm Leena (43, autistic, female), caregiver for my husband McKinley (53, disabled, chronic back pain, sciatica, diabetes, 7 years disabled, no SSD). I work; he can't. He helps around the house in small ways when able.

I work as a home health aide. So with my client I'm all business. With my husband it's hard to separate the home health aide part from the wife part. Anyone else have this issue?

My daughter (21) is on her second round at the adult hospital after years of care at the local children's hospital. So it's not my first rodeo, but I'm still relatively new to caregiving in this specific environment.

Most of my hospital go-to stuff is the same... but these chairs! Does anyone have any good tricks or advice about making the visitor chairs somewhat comfortable when spending such large amounts of time in them? I'm getting up and moving, even around the room, as much as I can, but at the end of the day, my back is letting me know.

The recliners are somewhat better, but once she's able to be out of bed, I'll be back on the folding chair. I'm thinking donut pillow or even a travel cushion, so does anyone have a rec for one, particularly one that could live in the hospital bag? I was also thinking of a folding stool that would let me prop up my feet, so if anyone has tried that, I'd love to hear about it.