r/CaregiverSupport

I’m dad for a 15 year old guy. Mentally he is “all there” but physically he has very limited motor skills. I don’t feel comfortable sharing much more online.

I assist with his bathing. He only wants me, not mom, cause I think he feels more comfortable with another guy.

One time while bathing he got an er-ction. Not surprising at his age. He was so embarrassed. I asked if he wanted to take a break but he said he was wet and cold and told me to just hurry up and finish so I did. And in the future when it happened I just did the same.

However the last time it happened and I was about to wrap up he asked if I could wash his privates again cause he still felt dirty. Now I thought nothing of it and felt bad cause I admittedly went very fast over that area and didn’t do a good job cause I was embarrassed. So I washed him there again and then finished up uneventfully.

A few hours later though he called for me and “confessed” that he only asked me to wash him there again cause it felt good being touched there. He even started crying and said it was just really hard to pleasure himself on his own.

I didn’t know what to say. I just said thanks for letting me know but that was inappropriate and I was only here to help him for a caregiving reason and I could not participate in anything s-xual. He said he knew and he was sorry. He asked if I was going to punish him. I just said I wasn’t mad at him but I had to think about how to handle this appropriately. He said he promised he wasn’t a freak. I said I know.

I don’t know what to do. I feel sorry for him. I remember being his age and the hormones and all. But I can’t be involved in that. Due to his age I’m not hiring anyone.

I thought about adult toys but I just don’t feel he will be able to manually use them well. Maybe something that vibrates or moves? Can I help get the device into position and then leave the room? Or is even that too far? I’m just throwing out ideas here.

So I have been getting a bit of grief lately from my not returning calls or calling with updates, etc.

First of all, before all this even I hated talking on the phone. It feels like work since that is what I do for work.

Second, he still has cancer, not in the hospital and hasn't died so there really isn't any update.

Third, I do not have time for chit chat. I'm pretty sure I re-washed the same load of laundry three times because I couldn't remember which load was done and folding is a luxury.

People do not realize how much I have to do. He's on oxygen and sometimes his legs give out because he's weak and a fall risk.

He is completely NPO so not only does his food go through a PEG tube but also all of his meds which I need to crush, dissolve in water and make sure not to clog the tube. Plus 3 water flushes a day outside of the meds. Which makes more pee. Which since he is on chemo is a whole thing of wearing gloves to clean.

Yes, we have a visiting nurse that comes 2x a week but she's not here at 4 am when he has an accident, or needs pain meds or needs unhooked from the food pump and walked to the toilet to poop. Or to clean the bedside commode if he needs it quicker when he has diarrhea.

People just have no idea.

Mom has a doctor's appt today, just a follow up with her GP. She had chemo Tuesday, talked to Dad Tuesday, she was a little sick. Talked to Dad Wednesday, she was sick in the morning but feeling better. Ask if he wants me to go with them today for the Dr. Nope, he can do it. Great. Family member was going to stop this morning but he said no, because I would be there. What? I asked, you said no.

So, 8am, I'm at work, Dad texts, are you coming over this morning? I tell him I'm at work, but I can be there to go to the appt. Call other family member and she can be here tomorrow, perfect, I can work from home today and go into the office tomorrow.

I get here, and find out Dad doesn't feel good, and Mom is scolding me because he can't do it all. No shit, Mom, but we all work and we are trying to figure it out. And she's fucking yelling at me because we aren't figuring it out fast enough.

I say other family member will be here tomorrow and she said she can stay all day after her morning meeting. And she scoffs. Like she expects it to just be me.

I get it, this is hard, on both of them. But I talked to Dad, he said he didn't need me. I always tell him to call if he needs something, I'll get it figured out. But you can't tell me you don't need me, cancel another family member because I'll be here, when you told me I didn't have to be.

So, now I'll go smile and figure it all out.

Grrrrr

I'm literally begging for my mother's passing. I know how horrible that sounds. She doesn't *want* to die because I'm killing myself keeping her alive. For what? She's miserable. In pain. Unaware of how close to death I am. I'm miserable and hospice as a single caregiver is absolutely traumatizing.

I recently lost my job and it has been compounding the loneliness and grief that I already live with from being married to a husband who's not really capable of being a husband anymore due to being cognitively disabled from a severe traumatic brain injury.

I am incredibly lonely and hurting right now and I just need to be held. I need to hear a strong, comforting voice that says, "I got you." and, "It's going to get better again." accompanied by a kiss on the forehead.

But I don't get to have that. I have to constantly be in charge, hold everything together, keep it all going, figure everything out while continuing to put my needs on hold indefinitely - I don't get to put any of it down and I don't get to even have moral support. Instead, I get to cry myself to sleep and think of reasons to not permanently go away.

I'm married without any of the privileges, advantages and joys of being coupled with someone, but still have to act like I'm in a normal, happy marriage, when I really need a partner right now.

I had someone for awhile that I could talk to who got it, who I deeply cared about, but they felt it best to no longer be in each other's lives.

I feel like my life is falling apart and there's nothing to break the fall anymore.

My father is a physician. A good one. The kind who believes medicine should involve touch, eye contact, time, care. He eventually had to go private because he lost faith in the American healthcare system; not in patients, but in a system that forces doctors to rush human beings through like a conveyor belt just to survive financially.

And then we became caregivers ourselves.

My mother-in-law was never even properly diagnosed. Maybe Alzheimer’s. Maybe another form of dementia. It started slowly: bread in the closet, burnt meals, confusion. Then she fell, underwent surgery and anesthesia, and was never the same again.

At one point, her stitches literally grew into her skin because they were left too long. She spoke Spanish and was labeled “combative.” They called my husband in to help hold her down while they cut stitches out of her hip with a scalpel. No numbing. No dignity. No humanity.

Then skilled nursing benefits ended, and they discharged her back to us when she still couldn’t walk.

So we did what millions of families do in this country: we pieced together care ourselves. We googled. We read forums. We stayed up at night trying to understand agitation phases and sundowning and why eye contact and tone mattered. We learned too late that the frustration we sometimes felt wasn’t “her.” This disease changes the brain. It changes the person you knew.

And now we live with guilt too. Guilt for not knowing more. Guilt for being exhausted. Guilt for being human in a system that abandons families and then blames them for not being experts.

People talk about Alzheimer’s like it’s just memory loss or “a little anxiety.” It is not. Watching someone disappear while their body remains alive is brutal. And the people making policy decisions about this disease often have never lived it under their own roof.

What the hell are we doing?

If this is genetic, environmental, tied to food, stress, pollution, isolation - fine. Study it honestly. But stop acting like families aren’t drowning right now while corporations profit from sickness at every stage of the process.

We are here. We are exhausted. We are grieving. Are you seeing us yet?

I feel like I’ve been taking care of my mom so much that I keep forgetting that I am a person too. And honestly, I gave everything and I am depleted. Literally. I shamefully admit that I am like a ticking time bomb but this time… I just can’t endure it anymore. I feel like I’m going insane. I can’t live like this when I know deep inside that my anger doesn’t really define me who I am as a person. So since I can’t afford therapy yet, I want to ask if there’s any self-help books you can suggest (literally anything). Thanks!

I honestly don’t know what to do anymore and I need advice from people who have been in similar situations.
My wife has significant medical needs and over the years I’ve basically become her full-time caregiver on top of being a husband, dad, provider, firefighter, business owner , etc. I do everything. I help with showers, getting dressed, hair/makeup, catheter care every few hours, enemas, taking care of accidents, helping her get around, handling responsibilities with the kids, all house chores, working, bills,  groceries, cooking, appointments literally everything.

I feel horrible even typing this, but I don’t feel like a husband anymore. I feel like a caregiver/provider/problem solver 24/7. I’m mentally exhausted and honestly emotionally numb at this point.

Whenever I try to explain how overwhelmed I am, it feels like she either doesn’t understand or says I’m “not doing that much.” And that she doesn't understand why I'm always so tired. She says she misses the old me from when we were dating, but back then we had no kids, no mortgage, no big caregiving responsibilities, no constant stress. I miss the old me too honestly.

I’ve tried explaining that I need time for myself sometimes like going to the gym or hanging out with friends once in a while, but it usually turns into guilt because she says I don’t even make enough time for her. The problem is even taking her out feels exhausting because everything becomes a medical/logistical operation with timing catheter care, worrying about accidents, helping her get ready, finding someone to watch the kids etc.

I’ve lost attraction and interest in sex too, not because I want to hurt her but because my brain associates our relationship with stress, pressure, caregiving, and responsibility instead of connection or partnership. Then she gets upset about that too.
I feel trapped in this cycle where I voice my feelings, nothing changes, I shut down, and go back to carrying everything. I’m becoming resentful and I hate that I feel this way.

Has anyone else been through something like this? How do you stop feeling emotionally burned out and disconnected? How do you set boundaries without feeling selfish? I honestly feel like I’ve lost myself completely. 

I’m caretaking for my 71 yr old brother who went thru a severe illness. His kidneys no longer work and he lost a foot. He is also incontinent. he’s not diabetic. We’re both managing as best we can and he is improving. he’s gone from not being able to sit up to transferring to a wheelchair & sometimes walking with a walker. I learned how to operate the hoyer and after a year of home cooking & healing we turned that rented hoyer crane back in.

It’s just that there are still sooo many issues. He needs to go to the podiatrist, the dentist, he just got a pacemaker, he needs a badly healed surgical scar fixed, he needs to go to a Gi doctor.

I want to go back to my family! I have kids and a house and grandkids in another state. it’s all so complicated. he won’t come to my home, and there isn’t room for him anyhow. I know you’ll all say just leave, I’ve done my job, but he doesn’t have anyone. how can I walk away from my brother who can’t walk? he’s a nice man. there is no one else to take care of him. he gets PT at home 2x a week.

When I came to help him I didn’t realize this was a two year thing. he won’t talk about it, I know he’s petrified I’ll just leave. I have someone come four morning a week.

Assisted living and nursing care are way too expensive, and the amount of care he needs makes home health care too expensive too. I just don’t know what I’m supposed to do. I’m in limbo. He doesn’t really even seem to think bout my situation and when we talk about it we end up arguing about it over the small stuff.

do you think people can be prayed out of limbo? that’s what they said when we were kids. no one is coming to save me and I really don’t know how to get back home.

Have anyone had a client who was so talkative they wouldn't shut up. I went to this client house yesterday. And he talked so much and wouldn't shut up. I understand he was just wanting to get to know me. But as a introvert I'm not used to talking so much. Small talk Is fine but going on and on non stop for the whole shift was draining to me. And then when we finally got to watching TV. He paused it ten minutes later to ask me what was on my mind. And yes I was talking to him because I didn't want to be rude. But I don't talk a lot and I'm not used to going to clients house and the client is a talker. And those types of clients want to be constantly entertained in conversation without no break. When we picked his wife up from work she was a talker too like what. I can't handle this. I had a choice to stay the whole shift or leave since the wife was home and I choose to leave. Then the wife said if I ever wanted me time I could come to their house. I said to myself constantly entertaining y'all through nonstop conversation is not my idea of down time. So I won't be back over there. They need a client whose talkative like them. It wasn't for me. For the caregivers who are introvert or talkative caregivers how did y'all handle a nonstop talkative clients who expected you to talk non stop.

My husband's care team visited today to check on pressure wounds, and also give an overall exam. We don't have a diagnosis, partly due to his very quick decline.

After telling a nurse on the team earlier this week that he's lost even more weight, I believe, and that he's refused all solid food for 3 days, they discussed options. A social worker came and spoke with me privately to say the doctor and nurse practitioner felt it was time to discuss a feeding tube. He's very weak, he doesn't seem to realize how much he's declined. He had told them when beginning with PACE last month that he didn't want a feeding tube.

They are giving him a few days to decide if he'd change his mind and want the procedure after all. I have read a bit, but I really don't know much about the pros/cons of a feeding tube in a person who maybe be at late stage Parkinson's. Anyone who could share your thoughts would be appreciated.

I am really struggling with my guilt and feelings toward placing my wife into memory care. The moving day is imminent and i don't know whether or not to tell her about it. I am not sure what she retains or doesn't, so don't know whether she can comprehend anything other than her emotional reaction to change. A large part of wanting to tell her is wanting to feel less guilty about what keeps coming to mind as abandoning her, even though I know that a place where there are people available to help her 24/7, provide better hygiene care, more social interaction, and better nutrition is better for her than any care I can continue to provide at home, but it isn't home and I won't be there beside her 24/7.

Hey it’s my first time posting on here, i was just looking for some tips and advice or what to expect when your loved one goes in to a rehab facility.

My mom took a nasty fall yesterday, and they gave her a neck brace. She had a long list of health issues, heart, lung, liver disease, stroke (3/6/26), ataxia so her balance is really bad and we definitely are seeing signs of dementia. Her health has just been going down hill pretty fast:/.

She’s going to be staying in the facility maybe 2-3 weeks until she gets some leg strength back and is able to move with the neck brace on (she has to wear this for 6-8weeks).

When your loved one was in a rehab facility did you visit everyday? Did you notice a different in care when you were not showing up?

Thanks in advance

Edited post:

We visited the her at the facility and we will be bringing her home tomorrow. We can provide better care for her at home, I feel like she will get worse if she stays there. She arrived at 2:30, I got there at 6 because I was told she was going to get assessed and cleaned up, i got there at 6 and is still in her dirty clothes, still has hospital stickers on her body. Just seems like that was just a sneak peak on how things will be there.

Please give me your tips and tricks for helping someone with Dementia who is in a wheelchair. She keeps getting UTI's and ending up in the hospital. I was thinking a bidet, but she isn't able to spread her legs very well. Any tips, tricks, gadgets, ideas, hopes or prayers to help her would really be appreciated. Short of her getting a catheter.

I’m a full-time caregiver for both of my sick parents, because I still at home. My sister, meanwhile, visits maybe once a month, if that. She’s always busy with friends and her own life.

Today, I found out that my mom told my aunt that “no one advocates for her,” but that my sister “wants to be here to advocate for her.” Is she serious? Even my dad knows that my sister doesn’t want to be here.

I can probably count on one hand the number of times that my sister has actually gone to appointments with either one of them. In a strange way, though, I almost feel validated. I’ve always said that I only do what’s asked of me and never go above and beyond, because no matter what I do, it won’t change anything. My sister will always be the favorite.

Has anyone else dealt with this kind of dynamic before?

She had a debilitating stroke a year ago. Bed bound with difficulty talking. She keeps saying that she hates her life and wishes she was dead. If she had the capability to kill herself she would. Before she had the stroke she was a drug addict. Last few months before her stroke she said she was ready to die and just didn’t give a fuck. She said she wanted to be with her (dead) son and parents. She’s in a shitty medicaid nursing home now. I try to make her life better (taking her out a lot, buying her whatever she wants). I wish she could just do all the drugs she wanted and die. She was expecting to die, not become severely disabled.

I'm so angry. My father went through a triple bypass. Hospital denied him for inpatient rehab saying he's fine with a little assistance and home health. Ok, cool. I have mad doubts, but I've been arguing for acute care for a week and you've given me a firm, insurance-based "nope".

First red flag: Oh, you don't call home health, they'll reach out.

Yeah, ok, whatever, I'll talk to them next week I guess. If he's as fine as you say he is, no problem. Still bullshit, but what else is new here.

Second red flag: They sent him with no pain medication. Um, you guys ripped his chest in half, you sure? I'm not.

Third red flag: No wound care instructions. The wound is covered, so I guess they want it covered, but uh.. nothing as far as what they want me to do with it except "don't get it wet". Cool, cool, I guess I'll keep changing the dressing kind of like it is until it's not needing.. fluid control and is healed enough to be exposed. You guys (the hospital) are lucky I half know what I'm doing with wounds.

BUT TO TOP IT ALL OFF:

The reason he was denied for inpatient rehab is because "he can move around fine". Come to find out- NO, NO HE CANNOT. I've had to half carry him around the house since he's been home. My back DOES NOT DO THAT. My back has almost as many diagnoses as my brain, which is too many. I cannot carry a man twice my size.

I'm furious. I'm desperate. I want to shake these people. Christ. He was difficult enough before. WHY??

What do I do. How do I appeal. Do I just carry him around until both of us can't walk? (Which is gonna be damn soon at this rate.) Christ alive.

The American healthcare system is going to put us both in the grave, I swear it.

A text I sent my husband. His mom and dad died and he has zero pictures of his family so I asked his old friends and church where his parents were foundational members for pictures of his mom and dad. They were at every event and funded most of the church so there are thousands of pictures out there of them. I got zero responses. Even from the pastor himself. And he owes most of his job to the work my husbands parents did over the 40 years they were at that church. We lost our home "rv" to the hurricane two years ago and got zero help cleaning up and my husband is disabled and can't lift. 2 years later and the rv is still on its side with half our stuff in it because I'm to busy working to deal with it. And maybe 20 people came to our wedding even though my husband's family is extremely well connected.

"So I am done asking for any kind of help from my "community" you see all these stories of the "community" coming together to help out thier neighbors but whenever I ask I get literally nothing. I asked for help with the rv when it fell over in the storm. Nothing. I asked for people to come to our wedding almost nothing, and now I've asked for people from your old life to send you pictures of your mom and dad and it's been weeks and zero nothing not one god damned picture. That is literally the last time I am asking anything of the "community". Especially your old crowd. They are just absolutely worthless."

I think the fault in this lies with TV. TV has lied to me over the years and led me to believe that people help each other and come together for eachother in times of need but I guess that's just another lie tv made me believe.

Hi everyone,

It took a full year of pushing and fighting for testing, and finally dad received a diagnosis. He has Moderate Major Neurocognitive Disorder, likely mixed etiology, with behavioral disturbance.

His report listed possible contributors as alcohol-related neurocognitive disorder / possible Korsakoff’s, vascular issues, and possible behavioral variant frontotemporal process. It also noted severe executive dysfunction, impaired judgment, disinhibition, compulsivity, and loss of independence.

I am posting because I feel like the “mixed” part makes everything harder to understand. It is not one clear dementia path where everyone seems to know what comes next. His symptoms overlap in confusing ways, and even the care professionals involved sometimes seem as unsure as I am about what the right next step should be.

The biggest issue is that my dad has very little insight. He believes he is healthy and independent, but that does not match reality. He can barely walk or get up safely. He insists he can manage his own pills, even though he was recently hospitalized after an accidental overdose. He thinks he can handle bills and finances, despite impaired judgment and impulsive spending. He wants to keep driving. He has tried to fire personal care help, even though he clearly needs support.

I have POA, but without his cooperation it has only helped so much. I know guardianship may be an option, but I am severely disabled myself and can barely manage my own care on a good day. I cannot become the full-time caregiver for a 69-year-old man who thinks he is fine while making unsafe decisions. The battle between us is effecting both of our health.

I guess what I am really asking is: has anyone else had a parent with mixed dementia where the causes and symptoms were all tangled together? Did it make the progression harder to predict? Did it make it harder for doctors, aides, family, or agencies to agree on what level of care was needed?

How did you know when it was time to move from “help at home” to stronger intervention, guardianship, or placement?

I would really appreciate hearing from people who have lived through something similar. I feel like I am trying to make huge safety decisions in a fog, and I do not want to underreact or overreact.