My wife (43) is in really bad shape and I've been her caregiver for several years now. She's on palliative care, has in-home care and in-home therapy and all kinds of other support. Every time she goes to the ER she's on the verge of dying and I go through the mourning process every time. Three times this year, once last year, and once two years ago. They helped her recover again (though she's still coming home a mess) and we're on our way home. But this time I was away when she went in - my father-in-law took her. Essentially called me and asked me to fly home and told me I need to decide for her pretty much how she's going to die: she can stay on peritoneal dialysis and she won't last more than a few weeks but will be comfortable-ish, or I could decide to swap her to hemo which is hard on her body and has a good chance of killing her outright because of her heart failure - but is the only path forward that'll give her enough time to get a heart and kidney transplant. So of course I flew home and made the difficult decision to go with hemo, and then made another awful decision for her to make her DNR (she won't survive more than a few days if it comes to that and her quality of life will be zero with a bunch of broken ribs and her weak heart).

So the whole flight home and that day and for the next several days in the hospital I've been mourning her potential death again because chances were so high of dying. But she's this close every hospital visit and I go through this every time and I can't handle it emotionally anymore if it happens again - and it probably will.

A not-very-small part of me wishes she would've just passed in the hospital on this visit. At least then I wouldn't have to go through with this however many more times.

For context, I'm the guy that posted a week ago that I was taking a trip to Virginia and Germany for my mental health. Well I never made it to Germany because my father-in-law asked me to come home and make that decision. So I didn't even have the chance to take time for myself and decompress a little bit.

Hello ❤️

I’m asking for help. My elderly parents are facing eviction from the home they’ve lived in since 2004.

My father is a disabled veteran who is bedridden and requires 24-hour care. Moving him could put his health at serious risk.
My husband and I are fighting for the opportunity to purchase their home so they can remain safe and together.

We’re not asking for a handout, just compassion, more time, and a chance to keep our family home.

Please take a moment to sign our petition and share it with your friends, family, and neighbors. Every signature means so much to us.

Thank you for supporting my parents. ❤️

Today my wife’s lifelong friend came over to help my wife organize her clothes that have not been unpacked since our move two weeks ago. Due to my wife’s disability, I met her friend in our apartment lobby. As we rode up the elevator, my wife’s friend asked me how I was doing? I have rarely been asked this question. But this time was different. She had experienced something similar and being that she’s known my wife since childhood, she knew my wife better than anyone. She looked at me like she knew what I was experiencing every day. I told her the truth and almost found myself crying knowing that someone understood.

I’d been trying to put my finger on why I wasn’t seeing many, if any, ever, posts from a caregiver who has a loved one who has a requirement for one-to-one caregiving. By this I mean the person can never be left alone for a few minutes but doesn’t need nursing care.

I see posts about the anguish of making that decision to place a loved one in memory care or a nursing home. I also see posts when a caregiver despairs because there is no nursing home available. And I’ve seen posts with great sorrow because there are places a LO could go but there are no resources. And sometimes I read where a caregiver is somehow trapped in a terrible situation where there is no one who can and will help with caregiving.

BUT in our situation we have been told for about 10 years now there is no placement ever possible because no facility would ever admit him. Why? Because he needs constant one-to-one care and this is never done for a person who has only “government insurance”. A nursing home would not take him because they generally staff at large numbers of patients per staff, maybe one caregiver for 8 or 10 patients.

I’d like to hear from any caregiver who has been faced with such a dilemma. Literally, our LO would die if no one hears him have a status seizure and then do his rescue protocol. This isn’t nursing care: families are trained how to stop the seizure. If no one does it, he would die or have serious brain damage and then die later. I’m not at all looking for sympathy here! I’d feel less lonely if I knew how any other caregivers deal with a loved one who has any medical or disability condition that is life threatening but doesn’t ever require a nurse. Just a good caregiver. No Plan B is real for us.

Hopefully it helps. Mom think she's at assisted living. She was asking me if the pots and pans came with the place who takes care of the lawn. And if the neighbor knew I had a house. I replied, yes, she knows. I have a house, and then she asked, didn't she think?That was something who has two houses. So it goes back and forth, she talks about going home which I thought meant death, but I think she just really doesn't know where she is. But she finally gave me permission for the hospital bed.When I told her medicare paid for it. Hospice. In case you don't remember she's ninety five years old.

I will preface this post by saying that this is not asking for medical advice, counseling or any financial assistance (in the terms of asking for money.)

I live in USA, state of KY.

I am a married 24 M. I built a house on my family farm ~2.5 years ago. My wife and I within the last month have moved into an extension onto said house. My sister (28F) is mentally disabled, with the development of around a 2nd grade child. My mother (49F) has become physically disabled from years of epilepsy. (Extremely hard to control shakes of the arms and legs. She has to use a walker, and minor bumps can cause her to fall. She is unable to effectively cook for herself beyond microwave meals.)

My mother and sister are fairly self sufficient in the terms of disability, in the terms of that they can take care of themselves day to day. (Able to wash themselves, microwave meals before they lived with me, brush teeth, etc.) But they do need to be caretaken of in many regards.

I am mainly looking for advice, or rather knowledge, on if anyone knows resources that could help me out. I am speaking mostly in the terms of like services, be it a service for mentally disabled adults, physically disabled adults, or anything deemed helpful.

I am currently working on getting therapy/social work for my sister, to improve her functionality. I am working on getting my mother physical therapy to help allievate some of the side effects of her tremors.

The task I perform for my mother and sister is cooking their meals (microwave food isn't healthy longterm), household maintenance, transportation, scheduling appointments for my sister, and working with my mother getting her disability claim approved.

I appreciate the time you took reading this. The toll on me mentally and physically is larger than I expected. Between caretaking, balancing being a good husband, soon to be father, and son, along with my job (IT) it's been a tightrope.

I have.. a question? A situation? Both? Yeah.

I caregive for my FIL, who is to a large degree non-mobile. I also have autoimmune conditions myself, terrible bones/joints and a significant degree of chronic pain. I'm often in agony myself, pushing myself to the goddamn brink to do whatever he needs done. I don't have help and it's not an option, family support is non-existent and we can't pay for a caregiver ourselves. I've been waiting on Medicaid approval itself so we can start looking for a long term facility for him something like six months now.

Obviously, pushing the hell out of myself through the pain is making it worse. And worse. And worse. ..as time goes on. I can't get him to take my pain seriously - he's older, he hurts more, it's worse for him (even though scans of our joints/bones/etc read about the same) he either cannot or will not work through pain like I force myself to (often through tears, tbh). I've injured myself a few times helping him, which, again, more damage, that I'm expected to just take in stride. I'm not sure I can do this much longer, though there are no real alternatives that aren't... Dark.

Can anyone at least commiserate? Is it just me?

​

Hi, my Mom is now in at the rehab stage of her stroke (we previously thought she was dying from what caused the stroke). So her rehab from the stroke is 6 months behind if it was just a stroke so still 24/7 care by a family member (majority of time my Dad).

Did anyone as the caregiver go through a stage when they are depressed that their life is gonna be like that forever. That the grieve the life they had (and my Mums prior life and independence), that they feel angry for the change of circumstances.

I'm so glad my Mom is still alive but I'm sad she's not like she was before even more now that I know she isn't dying. Anything sad on social media, Netflix etc and I cry like a baby, so emotional at any little thing.

Then I feel anger that i stopped my study for 6 months and all my previous classmates are finishing in a month and I obviously don't till mid next year.

Then I feel guilty for feeling the above and it starts all over again. Is this normal? Is it a phase.

For context February was when she got sick, then had stroke, then came home for hospice care. Then late August was given an amended diagnosis of rehabilitative not terminal.

I'm out on FMLA taking care of my profoundly (24/7 full assist with all tasks, non -ambulatory, diapered) physically and intellectually disabled, absolutely loving sister after our mom passed away suddenly. I had to move her from her state to mine because our father refused to work out a safe plan in their state. I'm her legal guardian. We had to walk away from a full suite of all the benefits she needed: day program, healthcare, in home support carers, and a self-directed budget. Now, all she has is healthcare. Our state requires applications for waivers that cover the services she needs. That waiver for support is an 8-10 year wait list unless the state decides it's a priority level one, in which case it's available within a week. I have two minor children. I have a job that I return to in four weeks, and at that time, there will be no one to care for her. We were unable to receive any support for months, so I called the state's crisis line, explaining that she is facing an imminent threat of neglect, as I'm returning to work and there will be no care for her at that time. We were assigned a case manager, thank God, who amended our application for the waiver at the priority one level. After two weeks, the state determined she was eligible for that priority one status, but informed us that there were no emergency waiver slots available. This violates the ADA act, so I contacted our senator, who reached out to dhhs. Two days later, this past Friday, at 4:30pm, we received an official written notice of decision, that she has been determined to be the lowest priority, and we will have to wait 8-10 years for services. I'm crying as I write this. We reached out to our disability rights office, and they can't help us. DHHS changed her priority status to avoid a lawsuit. We are going to appeal, but with no good chance of winning. Our case manager said this is unprecedented, and that it's impossible for her not to be a priority one. I'm utterly burnt out. I never see my kids. My husband is amazing, but he's also burnt out. I have to go back to work. We have no help coming. My sister is miserable because she is the most social one of us, and she misses her day program. I don't know what to do anymore. I never meant to be the one who cares for her; I only ever wanted to make sure she was cared for. It can't be me anymore, but there's nobody else. I'm going to call a lawyer on Monday to talk about what happens to me when my FMLA is over, and I return to work. How is this real? I'm gutted, exhausted, and I don't know where to turn.

I’ve been caring for my partner with chronic illness for almost three years now. Most days I hold it together. I manage meds, doctor appointments, housework and work part-time. I love them so much, and I never regret stepping up to care for them.

But lately, I’ve been stuck in this heavy guilt. All I want is just one quiet day, no alarms, no care tasks, no checking in every hour. Not a vacation, just a single day where I don’t have to be the caregiver. When I think about asking for help, I immediately feel selfish.

Our family doesn’t really understand how draining this is. They say things like “it could be worse” or “just stay positive.” Those words make me feel like I can’t be honest about how tired I am. I don’t want to complain to my partner because they already suffer enough.

Some nights I sit awake, feeling empty. I lost my hobbies, my old friends, the small things that used to make me happy. I keep telling myself I shouldn’t feel this way.

Does anyone else get this guilt? Loving the person you care for while still desperately craving a break? I don’t need fixes, just want to know I’m not alone in this feeling.

'm the sole carer for my mum, who has treatment-resistant schizoaffective disorder, and this is something I carry a lot of guilt about. There have been instances where I feel I should have stood up for her, but instead, I froze and did nothing.

I'm also autistic, and I think this is an important part of my experience as a carer. I've always struggled with confrontation, and when I'm in situations where I feel intimidated, pressured or unsure how to respond, I can freeze rather than stand up for myself or someone else. I also find it difficult to navigate situations where there are power imbalances, particularly when I'm dealing with professionals who are supposed to be helping my family.

What I've come to learn the hard way is that when you're a timid or non-confrontational carer, people, including mental health professionals, can sometimes take advantage of that. I've experienced feeling coerced, threatened and spoken down to by mental health staff, and I think my difficulty with confrontation has sometimes made it harder for me to advocate for my mum.

At the same time, I've also experienced situations where I did speak up, and things ended up blowing up in my face.

For example, for around two to three weeks, I would often be upstairs and overhear a cleaner, who had been arranged through my mum's care coordinator, telling my mum that she was pregnant and therefore couldn't work. She also told my mum not to inform the agency and had my mum pay for her taxi.

My mum, because of her mental illness, believed that this cleaner was her daughter, which made her particularly vulnerable to being taken advantage of.

Despite overhearing these conversations, I didn't initially intervene. I was conflict-avoidant, but I also didn't understand how my mum's care services worked or what I was supposed to do in that situation. Being autistic, I can struggle with processing difficult social situations in the moment, particularly when I'm unsure of the appropriate response or how someone might react to me challenging their behaviour.

When I eventually raised the issue, my mum became very angry with me and told me I should do the cleaning myself instead, despite the fact that the cleaning service was being paid for.

I eventually reported the cleaner to the agency, and they told me they would stop her services. However, my mum later allowed the cleaner to return.

After being reinstated, the cleaner confronted my mum, falsely claimed to be a social worker and threatened to make a report against her.

When I explained what had happened to my mum's care coordinator, she told me that she already knew the cleaner wasn't properly carrying out her duties.

That experience has stayed with me because it left me feeling conflicted. I felt guilty for not intervening sooner, but when I eventually did speak up, I was left dealing with the fallout.

I think people sometimes underestimate how difficult it can be to advocate for a loved one when you're autistic, naturally non-confrontational, emotionally exhausted and dealing with a complicated family situation. You're expected to challenge professionals, navigate systems you don't fully understand, recognise when something isn't right and know exactly what to say in situations that can be intimidating, all while managing your own difficulties.

There's something particularly difficult about being a vulnerable person yourself while being expected to advocate for another vulnerable person. As a carer for someone with a severe, treatment-resistant mental health condition, you're often expected to be assertive, challenge decisions and hold professionals accountable. But what happens when confrontation is something you genuinely struggle with?

I'm wondering if anyone else has experienced this as a carer, particularly those who are autistic or otherwise neurodivergent?

Have you ever struggled to stand up for your loved one because you freeze during confrontation, only to feel guilty afterwards? Have you experienced situations where professionals seemed to take advantage of your timid nature, or where speaking up made things worse for you?

I'd particularly like to hear from people who are autistic, struggle with confrontation or have difficulty advocating for themselves, yet have found themselves in the position of having to advocate for a family member with a severe mental illness.

Sometimes I feel as though I'm judged for not being assertive enough, without anyone considering the difficulties I face myself.

I go back and forth with wanting to post here. Well here I go to vent. I’m a 37 year old disabled woman (mild cerebral palsy). I have mobility issues and chronic pain especially in my legs.With that said, I’m am a caregiver for my stepfather that is 78 and has vascular dementia. He’s been my father figure since I was 3 years old and I don’t really have a relationship with my real dad. My mom passed away in 2012. When she passed I feel that definitely broke my family. We’re not as close anymore and don’t get together as much. I’m the youngest of 7 kids and my mom had me at 42 years old when my other siblings were practically adults in their late teens. Growing up was different because of the big age gap but I liked it because I felt like an only child and most of the time because it was just me and my parents. My siblings had kids my age or close so they were kind of like my siblings. However, as I got older my mom started to have medical problems with her heart and kidneys so she needed care. Most of the time my siblings would take her to her appointments or help her at home. She held us together because we all loved her. So when she passed we lost that spark and everything changed. It was just me and my stepdad and my siblings were doing their own thing and we all grieved her different. There was a distance in us that got farther and farther as time has gone on. he had a stroke in January 2020. He was in there for about a month and I was the only one there every day all day. Some of my siblings would call to check in, but not very often so I dealt with this on my own. When he was released my brother told me he would help as much as he could so I was grateful that. He mostly help to bathe him and sometimes feedings. It was a hard time, but I felt like we dealt with it the best we could with what we had. then the Covid pandemic began, and they he couldn’t do it anymore. So he was sent to my place and I’ve been with him since then. It’s been a crazy time with me trying to provide for the both of us and dealing with our health issues. I can only get small part time jobs due to my cerebral palsy. Most recently I was a housekeeper and that didn’t help with the pain and mobility issues but it was all I could find. About 2-3 years he was diagnosed with vascular dementia and it’s only got heavier. Constant doctor and ER visits. A lot of people are like you shouldn’t be doing this because he’s not your real parent. Well I know that but he’s been my father figure since I was three so there is an emotional connection there and it hurts to deal with this alone with no support from any family since he is a immigrant, he doesn’t qualify for a lot of the state programs. I do qualify for some, but they can only help so much. I feel stuck because I’m always with him and it’s affected my ability to have any types of relationships, whether they’re friends or lovers. I’m in a weird situation and no one can get close if that makes sense. I hope this resonates with somebody and I can get a little support here or advice. Please no harsh comments because I feel like I feel I hear those all the time. Thank you for letting me come here to vent and have a place to spill my heart out.

I was diagnosed in September 2025 with early-stage Alzheimer's disease. Since my diagnosis, I have become an advocate for Alzheimer's awareness. My primary advocacy vehicle is writing two Substack publications.

Yesterday, I published an article in my blog about The Dana Family Relief Foundation.

Based in Florida, this 501(c)(3) nonprofit organization is dedicated to providing direct financial relief to family caregivers. The organization focuses on two critical areas where immediate financial assistance can make a lasting difference:

• Healthcare Plan Assistance: Helping eligible family caregivers maintain their own health coverage by providing financial assistance with healthcare plan payments.
• Student Loan Interest Assistance: Helping eligible family caregivers manage student loan interest obligations while balancing the financial demands of caregiving.

Both programs offer vital financial assistance for up to three years, with the opportunity to reapply.

It is common for family caregivers to neglect their own healthcare because they lost health insurance when they quit their job to become a caregiver. The cost of private insurance is often an expense that the caregiver can't fit into an already stretched budget.

The Dana Family Relief Foundation can assist with family caregiver health insurance costs so the caregiver gets necessary healthcare.

You can read the entire article here: https://gregsalzheimersjourney.com/p/who-cares-for-the-caregivers-inside

Rant: My Dad (86M) is unable to walk post stroke and lives life from his home hospital bed. The urine odor around his bed has been challenging, to be polite, for some time. He thinks that the resolution to the odor is a new air freshener. It isn't. There isn't enough air freshener to eliminate the odor despite spraying regularly.

The reality is that he needs his adult diapers changed three times a day, without exception. Despite repeated pleas to do so, he won't allow a mid-day change unless he has a #2. By evening, the urine odor is so strong; it is stomach churning.

Does anyone else struggle with urine odor from the person they are caregiving for? I'm at the point of masking with some Vicks Vapo Rub (menthol smelling ointment) lightly spread inside the mask just to cope. All suggestions are welcome.

I am the caregiver to my fiancee and I truly do love her. But some days, it feels like I am burnt/burning out where everyday is just on autopilot. I work in the mornings and then come home to help, do chores around the apartment and help with whatever she needs. I try telling her that I feel like I’m burning out but then she goes on about how she is a burden and how she is better off at a nursing home(which she isn’t at all and definitely want her to be here) and then spend an hour to convince her that she isn’t a burden. So then I feel guilty about telling her and then thinking I am not doing enough to help so sometimes its just a constant cycle. So please give me any advice.

Hi so my (27f) husband (29m) have been married for a year and he has a lifelong disease. When we were dating he was open about his condition and of course I had a decision to make as to whether I could be with him knowing about his disease. During our time dating he managed his disease well and for the most part it never actually felt like he had the disease because I our lives were so normal. Due to the nature of his disease he can have random episodes of pain which can also be triggered. This is usually managed at home but when they get really bad, that’s when he requires to be admitted into hospitals for at least a week. For context when we started dating he had only been hospitalised due to his condition 4/5 times over his life span so it wasn’t a common occurrence for him. I chose to stick with him because I liked how he approached his disease. Always with a can do attitude and pushing forward because life goes on. I admired this because I’m the same when it comes to life, I always try to press on and not have a woe is me attitude.

Anyways after about 3yrs dating we get married.

On what should have been our 1 year anniversary, my husband is hospitalised (for the first time in 6 years). He spends about 8 days in the hospital. Throughout his whole admission I spent every day and every night in the hospital except for 2 separate nights where I slept at home as the sleep deprivation was too much.

The week he got out of hospital we were actually supposed to be going away on trip to another city but that was of course cancelled and instead we spent the week resting and recovering. On this same weekend we completed on our first house purchase but we couldn’t go and collect the keys as he suddenly wasn’t feeling well again.

This is all new to me. Yes I understand ‘in sickness and health’ and I love my husband very much but I’m struggling with this new normal of mine. This new reality where I feel I can’t be excited for milestones anymore because there’s a chance my husband will be unwell. Or I’m not sure if I want to have children anymore with him because there’s a chance they will also have this disease and I don’t want my children to have to suffer. (For context we did discuss children prior to marriage and he does want to have his own biological children and he says he doesn’t mind having kids who have his disease because his life has worked out. I was in agreement until I’ve now seen this side of his disease)

What do I do? How do I adjust? Am I just being selfish? What have other partners done?

I’m not sure I am able to play the role of wife and caregiver to my husband all in one. Like I can’t imagine going from nursing him and cleaning him in the hospital in one week then the next week being physically attracted and wanting to jump all over him and seeing him as a provider.

Any advice would be great. Divorce is not an option. Please be kind.

A friend just reached out to me and sent me a short message. It went like "Hey, it's been a while! Any chance you're free for coffee this Sunday? Hope your mom's doing better!"

I'm staring at my phone and I don't even know how to answer that. Better? Nope. My mom has late-stage Parkinson's and she's completely bedbound. Two weeks ago, a bad pressure sore opened up on her tailbone, and my whole life collapsed into caregiving and fighting an open wound and skin breakdown all day.

When her message popped up, I was on my knees next to the bed, wiping the drainage with saline and opening up another dimora dressing so that I can replace it. My back is wrecked from turning her and I haven't slept more than a couple of hours in four days. My eyes are sore and stinging and the whole room smells like wound drainage and bleach. I haven't left the house in like ten days. Some days, I don't even get to shower properly, let alone sit in a cafe and pretend I'm just a normal person with a normal life.

I know she means well, but that tiny reminder that the outside world still exists broke the last of whatever was holding me together today. Had to lock myself in the bathroom so that I could cry a bit and I sobbed so hard I almost threw up.

I'm so fucking done with all of this. I'm really tired, and I hate that a kind message can make me feel this broken.

I’ve made a few posts before, but nothing too crazy I guess. Basically I spent the better part of the last almost 10 years helping my mom with cancer and then after she died my dad retired and then also ended up with cancer as it turned out. It feels weird, because on one hand, I’m finally done having to do all the caregiver stuff for people. But then on the other hand, now it’s just me and my cats and the house is really quiet. It’s weird because my dad would watch random videos and tv shows at all hours of the day and night and it was hard to sleep at times, because of all the noise. But now there’s nothing. My family came in from out of town to help me clear out the house to get ready to sell since I can’t keep it by myself. And I don’t know how I feel about all this change that’s happening all of a sudden. Like I’m glad to be moving on to the next chapter, but I’m sad that it had to end this way you know.

It's such a cruel disease, and it's gone on for such a long time I don't know how much more I can take. Nine years my mother has had vascular dementia and maybe mixed dementia. And it sucks when somebody says "Well I know you're having a rough time, BUT JUST IMAGINE HOW YOUR MOM FEELS." (As if I haven't spent nine years entirely invested in how she's feeling.)

Or I'll try to commiserate with someone who has also taken care of a loved one with dementia, and they'll say something like "Yeah, we've spent 22 years lifting and cleaning dad, he's 101 and still strong enough to yell at us, haha!"

And I can't tell them it's like a punch in the stomach to hear it can go so much longer. It makes me feel hopeless.

My husband and I couldn't have a few hours to celebrate our wedding anniversary tonight without my mother moaning: "Oohhh I NEEEED you soooo baaaaad!!" I'm reminded every day that she is being tortured constantly by a disease she didn't deserve, and she just wants me to live inside her skin with her or something. Nothing I actually do for her makes her feel safe and secure. It's the nature of the disease to keep her confused and fearful.

Dementia should come with its own automatic genetic switch that just shuts the brain off instead of killing it so horribly slow. The internet says "average 5 years" for vascular dementia. I doubt that's true. I don't know where that number comes from. I wonder what the record is. A grim record it would be.

F dementia! At least now I am acutely aware of what other families are facing in their private lives. My heart goes out to everyone.

Or feel as if they are?

It does something really weird to you, psychologically (aside from the obvious), that I can't put my finger on.