Get Help
The Cost of Caregiving When Support Stays Behind Walls
Content warning: trauma, assault, medical abuse, chronic pain, death, grief. Names changed.
Dr. Andrews sent my husband home with a dire warning. “Get help or your wife will burn herself out.” Literally. She saw that caregiving was potentially cutting years off of my life.
The pressure built as my nephew’s wedding approached. For my mother-in-law, there was no acceptable option where I didn’t show up.
My husband knew they were both right. I knew they were both right.
No one told me how to get help.
Sure, they gave me phone numbers. Friends and coworkers gave me stories of their own journeys with aging parents. Brainstormed types of help that required logistics I didn’t have capacity to manage. Recommended books about dementia I didn’t have capacity to read.
I wasn’t even sure if she was starting to have dementia. She was a little forgetful. She got a bit confused. But she was in her early 80s. Wouldn’t anyone be confused occasionally, especially with the way the world is right now?
No one knew how to help me with an undiagnosed autistic woman, entirely disabled with chronic pain and severe PTSD.
She was terrified she would be taken from home. Taken from me. There was no such thing as safe care outside of my home. Her unique combination of trauma and pain was especially challenging.
Pain
She had peripheral neurofibromatosis (NF). Her nerves grew tumors all over her upper left quadrant. Her fingers, hand, arm, shoulder, back. There were a couple growing near her neck that threatened to paralyze her someday. There was one near her lung that we couldn’t be sure was NF. There was one in her breast we couldn’t be sure was NF. We needed to get them out, but that required tests and scans and surgeries, and neither one of us had enough energy to manage all of those additional appointments.
The tumors hurt. Unpredictably — one would fire, then another. If the barometric pressure changed, or she ate something with a little extra sodium and swelled, they all hurt. A normal day involved one or two periods of extreme pain and a wish that the medicine would stretch a little further, provide a little more control.
Trauma
She had trauma from other sources, but let’s talk for a moment about the medical trauma. Because she had plenty.
Around age 10, she fell from a hammock, landing on her head. She hurt her neck, and her mother took her to the chiropractor. The sessions with that doctor caused bad pain. “It doesn’t hurt, she’s just scared,” he told her mother.
She got her first toothbrush when she was 13. I don’t know her age at her first dental appointment, but I do know that every dental experience she had before age 19 involved similar gaslighting about her pain.
She married at 17, and at 19, gave birth to my brother. Lying on the table, being wheeled to the delivery room in advance of a 24 hour labor with a baby that should have been delivered three weeks earlier, the nurse saw only her age. “You’re too young to be having a baby.” The nurse punched my mother in the face.
When I was 8, Mom found a job at a nearby nursing home. She lasted three days, and forever after believed no age-care facility could provide good care.
Not all trauma involved physical abuse.
She had a wonderful pain doctor before she moved to be closer to me. When we moved back there ten years later, she was excited to return to the doctor. At her first appointment with Dr. Rivera, the doctor told my mom her pain was all in her head.
After moving to Texas, more than once, her pharmacy changed its policy on providing opioids without sufficient notice. Twice we had to scramble to fill her pain medication because you can’t fill these until the exact day. Going in on that day to learn they weren’t carrying them any more was traumatic for both of us.
Then there was the day we went to the pain clinic for her normal medication follow-up. We had a normal appointment with Dr Mohan’s PA, Suzanne, with the usual pain assessment and conversation. At the conclusion of the appointment, Suzanne informed us that mom’s last drug screen had come back positive for morphine and she would no longer be welcome at that clinic. She wasn’t going to fill the prescription at all, but begrudgingly wrote a script for 5 days to allow us to find a new provider.
In those 5 days, we interviewed multiple pain doctors. The one I remember best was the woman who basically ejected us from her office, insisting that she knew more about my mother’s body and pain than my mother did.
Knowing
Someone somewhere along the way said caregiver burnout was a real thing.
I remember the sense of relief I felt in that moment. Being seen. That I might be justified in asking for help. That help might be found. That help might be given.
Part of the problem was I didn’t think I was giving full time care. Not like other people with elderly parents. It had happened so gradually, I didn’t recognize the accumulation. I wasn’t bathing her, I wasn’t helping her get to the bathroom. I brought her food, but she fed herself. She could get out of bed and into her wheelchair by herself.
And part of the problem was I didn’t know what to ask for. I didn’t have magic words that manifested a supernatural being who would give me my relationship back as my mother’s daughter.
Knowing I needed help wasn’t the same thing as knowing what help to ask for.
Knowing I was burning out didn’t translate to a master strategy to fix everything.
Accumulation
My husband wanted me to fix it. To find someone. To hire them in. It wasn’t happening.
I found an organization online that matched caregiving companies with families. I filled out and submitted all of the fields only to find a subscription fee. I got spam email and phone calls for months after.
We found an agency. They came for a meet & greet. It was going okay until the woman asked to see Mom’s bedroom. Mom refused and clammed up entirely.
The pressure continued to build as my nephew’s wedding approached.
We tried another agency — insisted on meeting in their office before they came into the home. After 90 minutes, I still couldn’t get them to see my mom as an individual. They assumed a routine and health profile that simply wasn’t my mother. Talking about being with her at breakfast. Managing diabetes. My mother was a night owl, she usually didn’t start to get good sleep until 6 or 7 in the morning. She did not have diabetes. And I simply didn’t feel heard.
My husband went to the wedding alone.
I waited on my mother, bringing her meals and companionship throughout the day, every day. By this time she only got out of bed to go to the bathroom, watch The Voice with me, and go to doctor appointments. I worried that her lack of activity was my fault, but I just couldn’t generate more capacity.
I need you to know... my husband didn’t just sit back. He did everything I asked. Made phone calls, set up the meet & greets, did housework, worried about me, kept me going when I had nothing left. But he didn’t know how to care for an autistic woman with chronic pain and PTSD. He lost patience with her more quickly than I did. They butted heads more easily. So he generally stayed in the background, supporting me.
My mother lived on hope. She wanted to do things. She talked about going shopping. About going for walks. We kept her bicycle for years because she thought she might be able to ride it again when she got stronger, and I didn’t want to take her hope away from her. But hope wasn’t enough. She didn’t keep doing her physical therapy exercises. More often than not, when I finally got the time and energy to take her to the store, she opted out.
She needed a shower, and the bathroom wasn’t safe any more. One more thing that wasn’t getting solved. How do I manage two weeks of construction in her bathroom, with her stuck in bed?
My mother had made it clear she wouldn’t accept an agency. My psychiatrist asked at the end of my medication follow up, “Is there anything else you need?” “Yes,” I responded. “I need a caregiver that can work with my autistic mother, who has chronic pain and PTSD. I need someone who will see her as an individual, see the person she is.”
Within a week, he had a phone number for me — a woman who connected people. I gave the number to my husband.
When we arrived at the restaurant to meet Debora over lunch, we didn’t understand at first that she was already there waiting, because she had brought her husband. But after we sat down, it made sense. They were both in healthcare. This would be additional work after her shift at a local aging care residence.
We came home, and it took a few days to find the right moment. I don’t remember the conversation well, but I must have mentioned Debora’s primary job, because mom wouldn’t have it. No one would be safe.
My frustration peaked, and I dashed out of the room before I broke down. I told my husband that any care mom needed would have to come from him this evening — I was done. I went upstairs to the second master bedroom we had created for ourselves, laid flat on my back on the floor, and just sobbed.
A couple minutes later, I could hear his voice. And hers. They were arguing. He was beyond angry.
When he went in to find out what food she needed, he mentioned we needed to get help — that I needed help. She said I was fine. He erupted. “You don’t see what this is doing to her.”
He was right, but that didn’t make things better. Handing care off to him for one evening cost me three days being her only human, as we tried to find a way to repair the rift between them. Because in her mind, after witnessing his anger, he wasn’t safe.
I was getting more and more depleted, and she was getting more and more difficult. I didn’t recognize the stroke right away. She kept saying she was fine. She went to the bathroom. She was on the toilet too long. Sometimes that happens on opioids. I kept checking back. “I’m fine. I can get up.” Eventually, I realized she couldn’t get up. I didn’t understand what was happening, but I yelled to my husband to call 911.
They had to get her out of that little bathroom, and it hurt her. There was no avoiding pain in that moment. And that might be the thing that broke everything loose for me. That was the moment when causing pain became inevitable.
Receiving Help
Outside of her room in ICU, a doctor looked at me and said those same words, “Caregiver burnout is a real thing.”
“I know. I haven’t been able to get help.”
We got her paperwork in order — her living will, the power of attorney.
My brother-in-law said to ask for a palliative care consult. Julia helped us start getting real assistance, handing me names and numbers. Then she had a conversation with my mom, where my mother clearly said she wanted me to have help. And that she would go to rehab because she wanted to get better. It was the first hope I experienced in years that felt real.
Mom didn’t get stronger at rehab. They were planning to discharge her. I realized as I showered that morning, I couldn’t bring her home. I couldn’t care for her. It would kill me. We started arrangements for hospice, and finding residential care. And then, she didn’t wake up.
It was over. And yet, it wasn’t. If the increasing intensity of caring for her over the past few years wasn’t too much, three weeks of managing her care in hospitals certainly was. My migraines returned unpredictably, as chest pain. My psoriatic arthritis declared itself via flare. I thought the aches were because I hadn’t been getting enough exercise, or because I was in my mid 50s. My dermatologist said otherwise, and my new rheumatologist agreed with her.
The memory of my husband’s angry voice still echoes up the stairs occasionally. A few months ago, as I was preparing to retire from work, I realized my husband was burned out too. He had been holding everything together for both of us so I could care for her. That evening when they argued, his anger wasn’t only on my behalf. It was his depletion announcing itself. Then the stroke happened, and we both pushed ourselves beyond what either of us had left. During the three weeks I was managing her care at the hospital, he held everything together, paid the bills, fed the cats, managed the house, and drove me back and forth when I was too exhausted to drive myself. Through all of that, he continued to work full time.
Walls
Years previously, Dr. Andrews sent my husband home with a dire warning. “Get help or your wife will burn herself out.” Literally. I couldn’t get help. And I’m living with a chronic immune condition as a result.
Here’s the thing no one seemed to understand. There was no other choice I could live with. Telling me to get help wasn’t helpful. Telling me it was okay to get help wasn’t helpful. Telling me how other people got help wasn’t helpful.
Those things weren’t helpful whether they came from her doctor, my husband’s doctor, my doctor, any of the nurses, my husband, my coworkers, my in-laws, my friends, or my neighbors.
What helped was asking for a palliative care consult. That’s the moment. When Julia saw me, and started bridging the gap between my mother’s understanding and my needs.
When I sat down to write about my experience, I had a clean purpose. I didn’t intend to recount the entire story of my mother’s care. But I can’t separate my need for community from the lonely journey I’ve been on without it.
I don’t have in-person community. Is it because I’m neurodivergent? I don’t think so. Or at least, that isn’t the only reason.
People don’t help each other. We talk about building community. But in my world, in-person community simply doesn’t exist.
I asked for help. I called churches that never returned my messages. I registered for services that required a fee and spammed me. The medical specialists saw the various parts of my mother, but never saw to her care.
I tried to hold onto pieces of my own life too. My husband and I went to yoga together — I wouldn’t have managed it alone — but the cost of time wasn’t met with connection. Neither of us fit there.
I had occasional meals with coworkers — the local ones, since I worked remote. But with few exceptions, I invited, I scheduled, I chose the restaurant. It wasn’t reciprocated with more than a “this was great, we should do this more often.” Neighbors spoke on holidays and in passing, but nothing substantive was said. My house wasn’t set up for guests anyway, not with the capacity I had.
Through all of it, I was working full time. That was the one thread I thought was stable.
I see the call for people to engage, one person at a time. I do it. As much as I can. I believe in community. It just seems sometimes like no one else does — I see the words, but I don’t see the actions. Not here.
It took three years and a life-altering crisis to get help. I paid a high price. My husband paid a high price. We’ll be living with that cost for the rest of our lives.
For anyone reading this who doesn’t know yet: palliative care and hospice get treated like a verdict. People equate them with end of life, as if comfort only arrives because death is close.
It could have gone differently for us if we’d understood it the other way around: end of life happens because comfort is given. It isn’t six months left to live. It’s quality of life for whatever time exists. Enough pain medicine is not compatible with extended life. But it is compatible with love.
I can’t promise to help anyone find the right help, or even know what to ask for. I didn’t, for three years. But I can do this much — make these words a little safer to say out loud, and a little less like giving up.
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Oooh. My husband has a genetic mutation that almost guarantees his final stretch he will be immobile, incontinent and in dementia. The mutation results in a disease called CADASIL. Repeated TIA strokes, some that are known when happening some not, do the damage. Right now, he’s still mobile, still mentally himself but lives in a fog of fatigue. We are uprooting ourselves to buy out my co-inheriting sister of my mother’s house because it’s easier to buy half a house then a whole house, we like mom’s house and haven’t found anything else we do like. And the Stark truth that by the time we reach his end of life, it will have been Medicaid paying for his care means that there will be a Medicaid lien on the house and I will not be able to sell it and go anywhere else. I will be able to stay in it for the rest of my life, but I will not be able to sell it take the money and move. So we’ve refused to move into a house I do not like. I love the house we’re in, but it has too many stairs and there comes a time when standing up to transfer into a stair lift isn’t going to work. That point is well short of the point at which he takes to his bed and never comes back out. It is my hope that moving to a flat house gives us the gift of time while he is still mobile enough to do things and not use his energy with stairs and stair lifts. And that one, the mobility and dementia comes that that period of time is mercifully short. I know it will be extremely difficult to find help. And it will feel terrible to have people living in our house to help us. We’re very quiet, private people and I did not discover until after the stroke that disabled him from returning to work this February that I am AuDHD. This is all a lot.
I will reread your story and think about all the junctures where it would’ve been most helpful to you to have some people already in your corner. And to try to see if I might be able to recognize them coming.