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.

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.

Mom 77y- stage 4 lymphoma and dementia. On hospice care as of two days ago.

She lives in a small upstairs apartment with my brother who has a physical disability. He can give her meds, do laundry and reheat food.

Right now my sister and I switch going every other day to help shower her, bring them food etc.

I have two small children I have to bring with me when I care for her as my husband works. This isn’t working as I can’t care for 3 people simultaneously.

How hard was it for those of you who brought in your LO when also having small children?

LO just admitted to icu lactic acid went from 3 to 5 to 7.2 ugh .

But I strive for 24 hours alone.

Even better where someone caters to me like I do to my SO.

No one demands the care I give.

Im digging my own grave.

Not seeking advice…just speaking to the abyss.

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.

I was a care giver for my brother for years then he suddenly passed away from a brain hemorrhage popping overnight taking his life . I decided maybe to get into caregiving because it’s all I know for 10 years.. my first day with a a disabled adult around 30 they send me to his school with his dad with minimal instructions I kind of was just there to guide him around but he would not listen to me and was very strong would push me around and try to walk into traffic I had to use my full strength to stop him the dad picked us up from after school took us to a park I thought he would relax more but he was stealing peoples food and trying to jump into the river finally his dad came after 30 minutes and picked him up he said are you getting the car so you can finish the shift (2hrs left ) but I was so burnt out I said I had to go pick up my kid from school and he gave me a smirk small laugh and drove away ..I called my supervisor and quit immediately after taking care of my brother for 10 years I don’t know if I can do this line of work anymore going to look for different career paths but god bless you all for what you do I have the most respectful for caregiving after today.

My dad has Parkinson's Lewy Body and has been living alone and far away for quite some time, but finally that's changing and he's moving closer to me. For years I've recommended he get a caregiver, even just a few hours a day, but he's always resisted and from afar I didn't have much ability to influence. I'd love some advice from the community:

- Any tips on how to lower his resistance to having a carer?

- Anything that helped you make the process as smooth as possible for you and them?

- I've never searched for a caregiver before. What are the green and red flags I should look out for?

- Anything you think I should ebready for?

P.S If you're caring for someone with Parkinson's Lewy Body and have some general tips please share - sadly I know things only get worse and it's a tough journey ahead. Hope ya'll had something to smile about today!

Good afternoon everyone, I've been caregiving a 21 yo guy, this guy has Developmental Disabilities. He doesn't talk unless one or two things, he walks -and runs- independently and he is supposed to do his things independiently, but he loses focus quickly and get distracted. He's too stubborn

He use to be challenging with me when I tell or order him things to do like going to the bathroom (he uses to get his pants dirty). He also has this sexual behaviour when he is getting called he get excited, he laughs and doesn't do nothing.

Do you have any strategies which can be useful with people like him? Thank you

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.

My (35) dad (72) has stage 4 cancer. I'm an only child and my mom died a few years ago. He has far outlived his initial prognosis and has largely had pretty good quality of life and independence until a few months ago. After several recent hospitalizations (GI bleed, falls, etc), he told me he wanted to stop treatment and focus on comfort measures. He's incredibly stubborn, hates "being a burden," etc etc. There have been several periods over the course of the disease where I've had to stay with him short term and take care of him, and it's been awful for both of us. It felt like he was making the right decision for him and his quality of life. I was obviously sad but honestly it was a huge relief.

Well, his oncologist has convinced him to "not give up," and that this decision is "premature." So now he's decided to forego hospice and be in active treatment, with little convincing evidence that it's going to actually improve his well-being. I fully believe she can extend the length of his life, but I don't think it's the kind of life he wants to live. So now he's back home, sleeping 18+ hours a day, eating next to nothing, has lost 30 pounds in less than two months, barely mobile, etc. He has okay cognitive capacity, but he's easily confused, irritable, forgetful, etc etc. We're lucky that he can afford some outside help, so I don't have to be here round the clock, but I'm already exhausted.

I feel like a monster, because I obviously don't want to talk him out of wanting to live longer. I just don't think this is what he actually wants.

I’m taking part of my maternity FMLA this month and I’m exhausted.

I’m a single mom, my baby is teething, and I’m home alone with her and my autistic adult sister.

For the most part, my sister can take care of herself, but she needs so many repeat instructions and she takes a long time to process things. She’s also physically slow and takes a long time to do things. I had to take her to a doctors appointment this week, and now they’re asking her to do daily blood pressure readings at home. This morning I found out she’s been trying to do it by herself, and she’s been placing the cuff on her forearm. I gave her step by step instructions and showed her how to do it twice and she still got it all wrong.

I’m living with my parents because I had to break my lease when I left my daughter’s dad, but being with my sister is so tiring. There’s days I feel like I’m responsible for a baby and a child. My parents refused to look for services for my sister when she was a child because my mom felt like she could handle it. When she turned 18 they tried (or rather, I had to try) and she was denied. I told them this would happen and they didn’t listen and now I’m actually living my nightmare, trying to raise my own family while still being responsible for her in a sense. I’m so grateful that my family is letting me stay, and that my mom is helping by by babysitting when I’m at work, but I’ve been feeling so much frustration towards them because I feel like I’m carrying the brunt of their choices. My mom is also not here because she and her siblings take turns caring for my grandmother abroad. Another consequence of just letting things play out.

And then today, my baby spit up formula even though she hadn’t done that in like 2 months. Completely drenched us both and the couch. Meanwhile, my dad was taking his daily coffee run with his friends and my sister was working out outside. I was supposed to take some time this month to look into opening a college savings account, and changing my own retirement plan because I don’t want my daughter to be an adult and be burdened with dealing with me in my old age. I haven’t even been able to take care of the actual responsibilities I wanted to take care of this month, because we go that stupid medi-caid letter saying everyone whose receiving benefits needs to have a job. My sister who hasn’t worked in 10 years, and who was encouraged to quit every job she’s had because my parents didn’t want to deal with her complaining, has to get a job. Another thing I have to figure out for her.

I didn’t want my life to be like this. I’m sad because this is not the “maternity leave” I wanted. I wanted to wake up with my baby in my own apartment, to have spaces built into my home for her, and I can’t really do that here. My parents and I are trying our best to do that, but I’m just so sad and disappointed in myself. My baby deserves better. Right now, she doesn’t know better. She’s happy to be with me and my family, but I’m so exhausted. Everyone keeps telling me to stay here as long as possible for the financial benefit, but I am so tired of the same thing every day. I worked so hard to move out and my friends and extended family don’t see the day to day of living with my sister. I think everyone is chalking up what I feel to PPD. And I think there’s some truth to that, but everything else outside of being a new mom is adding so much stress. Starting with my job and ending with my living situation. I called my mom to vent a few days ago, and she got mad at me and told me to just help my sister. That’s always their go to. To help each other out. As if having a teething baby that doesn’t nap unless she’s being held isn’t responsibility enough.

Even though I’m in therapy, I think that can only do so much when my living situation is like this.

And I don’t even know if I want advice. My sister never got a formal diagnosis and she’s an adult, which means she has full say in her medical care AND requesting any type of services. She has a doctors appointment next month where we plan to discuss an actual autism evaluation but I’m honestly not holding out any hope for that anymore. She will agree initially, then goes on social media and reads that Trump and RFK Jr. want to send autistic people to concentration camps (I hate Trump but she’s the only person I’ve ever heard say this, and she will also read things, misinterpret them, and tell herself it’s worse than it actually is) and then she denies all help.

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 moved in with my partner to caregive to him on a more consistent basis. But with the understanding I was still free to come and go if I needed to, since I have family and friends in other areas that I visit.

Anyhow, one night, he had an altercation with his landlord over unpaid rent, and he fell down the stairs. Ever since then, my partner has been abusive towards ME. What have I done? I'm the only one here helping him with his back pain/ back issues. Not a single family member or friend has stopped by to help.

One night, he slammed my foot in the door. He started to verbally abuse me constantly, calling me, "stupid," saying how I have "no brains," etc. He is probably correct because if I had any brains, I would leave him and never turn back.

He nitpicks at everything I say and do and has started ordering me around. I'm "not allowed" to just chill and relax. I got screamed at last night for taking a nap on the couch. Heaven forbid!

Again, all of this started after the altercation with his landlord where he fell down the stairs. He should be fighting with his landlord, not me. I have been the only one here for him taking care of him. I have done nothing wrong and nothing to deserve this.

Heya everyone. I am not sure what I want out of this post. Maybe to vent, maybe to just feel like I can do something different other than the daily grind. Definitely community.

I am 31f. I was homeschooled my entire life in a rural town. Then I promptly moved to a big city at 17 for 8 years. That experience, along with a lot of others, especially getting to know different kinds of people and ways to live, changed me a lot. I'm really proud of the person I have become now. I feel quite confident, in control of my effects on my life, and am growing in a direction I want to. I enjoy direct communication and rejection no longer scares me like it used to.

Maybe I'm... is the word jaded? Irritable? I don't know. This year has been monumental for me. I've changed and improved most every aspect of my health, mental and physical, which has been fantastic. I have more energy. I'm no longer depressed to a point I feel like I'm dragging bags of rocks around. I am somewhat like... the world is my oyster I just need to make a flexible plan. It has been going well.

I guess what my "confession" is, is that I'm frustrated. I am from a very small family, that grew up like something of a cult with minimal social exposure. They are all (all being 5 people that I still speak to and care about, and have influence over as we are close) intelligent and kind. They have given me support to get where I am today. I have always felt that I wanted to be prepared to return it in kind some day. That does not mean I am minimizing the amount of effort I've put into myself.

By 19, I was fed up with being taken advantage of or taking wrong steps as I was very gullible, poorly socialized, and deficit in different skills. I stumbled around with different issues but studied social skills, health, and what I needed to develop myself as who I wanted to be. I feel extremely lucky and proud I've been able to do so. I do not expect perfection. Just functionality and some enjoyment of my life.

Maybe this is just yet another change I am settling into. I am the little sister of my family, the youngest with my mother and aunt being between 60 and 70. I am changing my dynamic in my family as the golden child and emotional quick fix. I have always been the person that was quick to smile and be agreeable. I have been more prone to state my true feelings and solutions as they come to me as opposed to managing my families emotions. They are, like I said I was, poorly socialized, prone to severe anxiety, with health issues.

My ability to problem solve is something I'm extremely proud of. And with Google, jeez, it comes easily to me generally. I am super happy that I have been able to influence them and help them make big changes. Not even just because "I need to, or it's my job" but I care that they don't do things that are genuinely BIG problems, or helped them settle to prevent serious mental issues.

At this point... maybe I'm just tired. I'm working on my development as much as I am others, not just for their sake to be nice, I understand allowing natural repercussions and not saving people from their decisions. Its things like.... OK, I'm going to be your caregiver. I am not going to allow you to simply make this giant financial decision with me involved that will be an issue and my responsibility. So not only am I doing the research, I'm educating, handling my own emotions, and theirs in one way or another. It has taken time to settle things. As a person who never frowned, often, even my expression is read as omg what did I do wrong? And I gently correct it as I see it that I am just changing and this is how things are. They are all making progress.

Maybe, tldr, I just "wish" (my father in his way, would say wish is a stupid word, you have to make it happen) someone would have done these things for me or I had more people around me who understand isolation. I wish, that I didn't have perspectives I do and could allow people to be but it does come at a significant cost to me, and I've always allowed other people to run me over and be the one fixing it. I also find it difficult to do basic groups, though I've mostly done mental health ones, because I find that I contribute more than I receive for information and support. I don't mind it. But it's not what I'm looking for.

I am slowly developing some relationships in my community, though they also seem to half want something timewise from me or labor. I do refuse and it's fine but.... I don't know. I guess I'm just weird. Maybe it's a mental thing I'm not seeing. My therapist seems to understand but I'm not seeing him often enough, it's once a month and I do not have resources to see someone more frequently nor do I want to change to someone that gets me even less. I live rurally now and do not have options, and am not interesting in free online therapy as their accreditation can be spotty. Maybe I just don't want to be alone in my feelings as I've spent much of my life that way, and am navigating the transition of becoming my parents parent in a way. And for others in my family, the go to person.

Tldr: I am grateful. I'm making huge progress. I'm managing my care. I'm happy. I'm allowing myself breaks. But I. Am. Tired. And emotionally overwhelmed. Often it is more at night I struggle when I am done being... first thing that comes to mind is "mom" as I've had step children previously in a long term relationship. Adopted a girl who lost her parents in a court of law. Anyway at night, sometimes I just want to be in company of someone who knows. Im very lucky to have a friend that's available that gets it, but I do not want to put all my needs on one person. Need balance.

Thanks for letting me ramble

Hi everyone

I recently made a post on here regarding my mom who is late stage colon cancer, and i’m worried we’re reaching the finals weeks-months of her journey. She’s refused recent hospitalization even though her oncology team and doctor greatly emphasized she needs to be under medical observation and is under high risk being at home.

If anyone’s interested in understanding the context and situation more, here is the post i made.

One reply stood out to me on one of the other subreddits i posted on about hospice being a mindset. I mention this because a lot of people suggested it’s time for hospice or at home palliative care for my situation. Unfortunately i live in eastern europe where this type of care is no where near as developed as in the west, and after doing extensive research we don’t really have any resources for this other than private care that we cannot afford or at home palliative care which is a very bureaucratic process with a waitlist (that the doctors haven’t even brought up or suggested even though you need to be referred by the oncological team to apply for this)

With that being said i’m looking for advice from how to create the best “hospice” like state in the home and ensure her comfort. She’s already on pain management meds, we change her diaper and clean her, try to keep her as comfortable as possible and eat when possible (even though her eating is max half an ensure and 5 tbsp of clear broth a day). We’ve also stopped fighting her on smoking as we don’t want to take this last pleasure away from her (she sleeps most of the day and cannot walk anymore, but once or twice a day she will be asked to be lifted up from her bed onto her wheelchair to be taken out to the terrace and have a few cigarettes, we used to argue with her about quitting but at this point realized we’re doing more harm than good by arguing w her ab it)

What else can we do to create the best experience possible with our resources?

Ive been living with my aunt for about 2 months now. I noticed immediately how often she forgets things. sometimes its little things like where she left her phone, what she came downstairs to get, where she left her bible, conversations we had an hr ago. In that time I've also noticed she forgets to eat, she forgets her train of thought more often. Everytime I point it out she fusses at me as if I made her forget.

Now idk her medical history but im starting to think this isnt the first time its come up and someone on her care team mentioned her memory issues being a concern. Because she flew off the handle on me last night. Im genuinely concerned though. She swears she has a sound mind and I'm not saying she doesnt. I am saying her forgetfulness is concerning given her age and that she's often home alone.

Idk what to do or how to even address it bc she's so prideful and i dont want to make her angry. Im worried though. Sincerely and it seems like I'm the only one who is.

Yesterday while getting her plate ready for dinner?My mother in law had a mini.Stroke.

We called hospice and a nurse came over. It was really very difficult.I can't even talk much about it right now.But mom back to her self. By the time the nurse came and wanted to know what was wrong with her.Why the nurse came, of course, we didn't tell her.We told her she just wasn't acting right?So we wanted someone to check her.

My elder is 5/6ths of the way through chemo for some very aggressive cancer. He saw the oncologist yesterday and got great news — the tumors have significantly shrunk snd there are no new ones! After the 6th treatment, he’ll be able to move to a “watchful waiting” status! He’s 85 so this response is AMAZING.

Both of us got in the car to come home and I felt…odd. I wanted to cry but I couldn’t identify any emotion under it. I finally said to him, “I’m so happy for you but I feel like I might cry a bit.” To his credit, he patted my arm and said “Me, too, love. Now I have to decide what to do with the rest of my life because it seems I’ll be here a while.”

His largest tumor was on his spine so he’s now in a wheelchair while he learns to walk again and he needs 24/7 attendance. I schedule carers for him and do some direct care myself. His favorite carer met us at his house and took him inside and I just sat in the car and sobbed.

I have no earthly idea what’s wrong with me. I mean, abstractly, I know what’s wrong, I have trouble identifying my feelings in the moment and I’m in therapy and all, but geez. Absolutely bawling. I still feel kinda unbalanced.

Just wanted to share bc I can’t really talk about this anywhere else.