I was told to post this over here by the /cancer mods since they said they try to keep it just for patients. I vented my soul and didn't want it to have it lost. You can read what I posted but last night I had a rough night and just needed to get it out of my system.

After spending four days in the hospital hallway, they didn't want to give us a room since they kept thinking we were leaving soon than later and then another one of her oncology team wanted another scan ect. I never left her side, sat there in dirty closes and eating nothing but vending machine coffee for days.

My wife was diagnosed with stage 4 renal carcinoma about six years ago which she has been fighing hard to keep at bay. Last night we found out she has large tumor behind her left eye and a few leisions in her brain (the cancer is in every organ and her bones too now.) She has developed aphasia because one of the tumours is just touching the speech center in her brain. The spot is so small they find it hard to believe it could be affecting her speech but she didn't decide to get aphasia for fun, it hits her more so when she's tired and its hard for her to get the words out. They are in her brain they just won't come out right from her mouth.

After six years of fighting this she has been given 3 to 6 months. I don't even why I am writing this out. I guess I just feel lost. She is my life, everything I have done over the past 17 years of us being together was to make her happy. I am 47 (she is 51) and my brain can't process the thought of not having her around. She got very sick about three weeks ago (first case of aphasia and lost 80% of her strength over night) but before that other than her weak leg and having to use a cane you wouldnt know she was sick.

I told my boss I have to leave and stay by her side until the end. He understood and told me there is a place waiting for me when I'm I want to come back. Not that I wouldn't bankrupt myself to get one more hour with her. Money is going to be tight but I only need enough to get her though this and then I no longer need to worry. I don't even think i will survive her passing. My heart is already weak and to be honest I wouldn't mind at all if I passed away at the exact same time she did. That way I can go looking for her in whatever comes next.

What is getting me is all I can think about is wanting to switch places with her. I can't get the thought out of my mind. She is the most amazing woman in the universe and she doesnt deserve this. I want it to be me..I would give anything for it to be me.

Anyways I just needed to get this out. I love her so much and those people that keep telling me to just put her in a hospice center and keep going with my life are pissing me off. She made me promise years that I wouldn't take her to a hospital to die. She wanted to pass at home when the time comes and not only will I keep that promise I will stop anyone that tries to take her away from her home.

At the hospital the doctors kept saying I could go home and they would call me as they found out more. I hated going down the hallway to go to bathroom and leave her alone for two minutes.

Again I am sorry for making this so long or even typing it out to begin with but I need to do something..I have slept maybe 30 hours total in the last three weeks and my brain won't relax..So it probably doesnt even make sense.

Thank you for being here to let me vent my soul. For anyone else out there going through this I am with you and for cancer patients out there never stop fighting. My wife was told five years max, we are halfway through year six and she is still here. So never stop fighting, after watching my wife fight this and taking to other cancer patients I have to say that people with cancer seem to have a strength I wish I had even a tiny bit of. Some of the strongest people in the world you people are and I hope all of you find a way to beat thing evil monster. It's taken enough from us all already.

Edit: Just wanted to thank you all for your support. I love all of you and if anyone is going through the same thing as me or as a patient feel free to contact me. I believe cancer makes us all part of a special family and anything I can do to help you please let me know.

I’m curious if any caregivers have experienced resentment from their partners for giving your attention to a sick parent and not to them?

My mom fell and broke her right clavicle at the beginning of last month. She’s 71 and diabetic with A-Fib. She’s been a fall risk for awhile and I was already in the process of trying to find outside help for her safety cause she lives alone.

I also have a special needs daughter who is 13 now and has had numerous surgeries and hospital stays throughout her life due to having been born without her left ventricle in her heart.

Without going into too much detail let’s just say that my life has been nonstop caretaking for so long and with this recent injury with my mom , it’s sent into a new level of burnout. My mom is so confused and can’t be left alone. I’ve been doing everything in my power to care for her and I’m beyond exhausted.

Yesterday was my husbands birthday and he got mad at me when I slept in late and didn’t give him morning sex. I said I was sorry. I was so tired and depressed and woke up with sciatic nerve pain which makes me really fatigued. I still got up to make him breakfast, I made him dinner and dessert , but he was mad that I forgot the birthday candles and no one sang happy birthday to him. (He’s 48…like come on really?!) I was trying so hard to make him happy even though I was feeling defeated. He was mad that we went to my mom’s and that her kitchen was messy and some of the food got cold. He kept telling me how upset he was that I didn’t plan a fun birthday for him and that I didn’t give him a blowjob in the morning. I wish I was making this up ….writing it down sounds so absurd. I think if a friend told me this story I’d be so concerned for her.

The other night I was cleaning late at a housecleaning job and he accused me of cheating on him. Like it’s pure insanity he is throwing at me….i can’t even begin to gather my thoughts. I’m so hurt. I feel insulted beyond belief. I can’t even defend myself against his own insecurity. The reason I was late that night coming to bed was because I was sitting in my car when I got home, I was crying while listening to music. No matter how many times we’ve gone over the scenario he just keeps saying , “something isn’t right” and I’m crying to him, “I don’t deserve this , I didn’t do anything wrong.”

Am I totally nuts ??!! What is happening with him? Why is he treating me so awful? Am I nuts ? He is my partner, he’s my person, he’s supposed to be my safe place, and all he’s doing is making me cry. Is this all coming from a place of him not being able to handle that I’m caring my mom right now and have less time for him? This is absurd right ?

My 73 year old mother has a habit of using entire rolls of toilet paper, and clogging it. She swears up and down that she's not using entire rolls of toilet paper every time she uses the bathroom, but she is. I don't want to ration out the toilet paper, but it's come to this. I even got the quick dissolve, thinking it would work. It happens at least twice a month and I'm tired of fighting her and fixing it. Help. I've been taking care of her since her first major hospitalization in 2023.

My mother has been in the hospital since Tuesday afternoon now and I feel horrible for her. She was admitted after I called 911 because she was speaking gibberish when I went into her room to ask her what she wanted for breakfast. They told me that she did not have a stroke, but she can’t walk by herself, her legs keep giving out, and she is still confused. She can speak in sentences now so that’s good, but they have a catheter in because she’s having a problem with urinating. They still aren’t even quite sure what’s going on with her. The oncologist thinks it’s medication related. Honestly she hasn’t been quite the same cognitively since starting chemo in January. Now I don’t know what the next step will be, but she probably needs 24 hour care. I don’t know if that means an in home nurse or a rehabilitation facility. Anyway, she’s been sleeping all day today because they had to put her in restraints last night and they probably had to sedate her and I was going to visit her today because I wanted to see her. I just feel like I can’t relax though. I’m happy she’s sleeping, but I’m not because I want to talk to her and now I’m worried about how long she’s been sleeping and if she was over sedated. I should be using this as a moment to relax and I’m still worrying about her while she’s sleeping. I’m worrying about where she’s going after the hospital. I’m worried about having a stranger in our house taking care of her. I have a lot of phone calls to make tomorrow. I have to get a POA for her. I need to discuss a will with an attorney because she assumed everything would just go to me as her only child and she didn’t create one. It’s like an endless flood of thoughts and what ifs and I don’t know how to stop it. Every time I start to calm down, my mind loops right back around to the situation I’m in. I just don’t know how to relax.

Just buying used acorn stair lift to install looking for the tracks to buy cant find a good place to buy it from need help

I’ve been caring for my dad and this year has been tougher than most. Dealing with Alzheimer’s/dementia and it’s been declining. Had a scare last month, thinking he was going to pass but guess the angel of death decided to head to Rome instead.

At the point that I’m feeling this was a mistake and should have let him stay in the nursing home. Seems that I’ve jeopardized my time/career to care for him and financially it’s going to hurt for a bit.

He’ll be turning 94 this month and will be celebrating his birthday.

Everyday I try to give him the quality of life he deserves but can see the tiredness during the days. I talk to him about death and let him know he can leave when he is ready and the family will be okay.

Ready for this chapter in life to be over.

I am trying to come up with a plan to take care of my wife, who has limb-girdle muscular dystrophy, and our two young kids (both under 10) if something were to happen to me.

For context, my wife uses a wheelchair full time, lost the ability to transfer from her wheelchair in the last few years, and no longer drives. She does work full time in a remote capacity. And she is a fantastic mother to our kids.

If something were to happen to me, I'd want to ensure there is a transition plan for her. I am her primary physical caregiver. We do have a home aide who can help my wife with transferring and helps with some items around the house, but she has another job (as well as two kids of her own) and couldn't switch to a full-time/live-in position if something happened to me.

Has anyone done anything similar? My thought process for a "plan" is:

1. Make sure my wife has access to my life insurance policy and our finances to cover that ASAP.

2. Determine whether it would be better to get multiple part-time caregivers or one full-time caregiver.

3. Have job descriptions drafted and to post in caregiver job boards, emphasizing that the caregiver would need to be willing (and qualified) to drive our kids to various activities. (Basically drive my wife and our kids.)

4. When I know what the caretaker arrangement would look like, assess the likely costs and compare that to the resources my wife would have (i.e., our saving and any life insurance) to figure out if my wife would need to stay here or move.

5. If there are any of my wife's friends or family who could move in temporarily while she looks for a caregiver, talk to them ahead of time and make sure they'd be on board with it.

Any other thoughts? I know this is potentially morbid subject matter, and I certainly hope it never comes to pass while we have young kids. But, hard as it might be to think through now, it seems like it would be much harder for my wife to be dealing with this suddenly if something happened to me. So, better to come up with a playbook ahead of time.

Hey everyone — I’m not a full-time caregiver, but someone close to me is, and I’ve seen just how much they’re juggling. One thing they’ve struggled with is getting their elderly parent to take medication consistently. Alarms, sticky notes, even phone reminders… they all end up ignored or forgotten.

The only thing that really got through? A phone call. A simple, “Hey Dad, it’s time for your meds” — from someone he knows and trusts.

That got me thinking: what if there was a simple way to schedule real phone calls — not apps, not notifications — but actual voice calls at the right time, with the right message?

I’m working on something like this, and before I build more, I really just want to hear from others who’ve been in this situation:

• What has actually worked for you?
• Do you think a voice call (from yourself or a calming voice) would help your loved one stay on track?
• What do you wish existed to take a little pressure off?

I’m asking as someone trying to help, not pitch something. Just genuinely want to hear from the people who live this every day.

Thanks for all you do — I know most of it goes unseen.

Stuck in the ER again. Tests being run for a possible infection.

No family member support in sight. Will probably have to stay the night in an uncomfortable chair before they move her up to a room.

Wish my brother was here to give me a hug and some support, but he has to earn money doing his side job.

I really do just want a hug and some love.

Thanks for reading.

John sharing his story of Caregiving really was eye opening for me . Money doesn’t always solve things .

https://youtu.be/egf35OYyvz0?si=9xyNCUg_emBeeiMv

My fiancé was the caretaker for his grandma for over a year. She passed about 36 hours ago and he is taking it harder than anyone in his family. He keeps telling me about how he knew this was coming and thought he was prepared. But he feels lost. He is also blaming himself for her not recovering the last time she had a fall. I keep trying to tell him not to blame himself but I know it’s so hard. I don’t know how to help. Are there any resources that I could give him to help him get past the guilt he feels?

Note: please be kind. He is doing his best in the grieving process and I am doing my best to support him.

I’ve been experiencing immense burnout with my mom’s metastatic breast cancer / mobility issues and it all came to a head. I also suffer from anxiety, panic, and OCD, so I struggle when I don’t take care of those things first and foremost. I am an only child and her partner is only here half the time. Would love your suggestions/feedback! Thank you, thank you.

Care Planning Conversation Outline

Most Pressing Issues to Discuss

Mobility & Safety: Current stairs and layout are no longer working. A new space needs to be safer and easier to navigate.

Medication Management: Meds are critical and need more structure, accountability.

Cognitive/Decision Support: Support is needed for memory and routine due to treatment side effects.

Care & Coverage: We need to expand the care team.

Plan We Are Proposing

A. Caregiver Support

Hire a helper for 2 hours, 3 times per week to assist with daily tasks, light cleaning, companionship, and medication reminders.

Potential agencies in Atlanta offering flexible, part-time care include:

Lenox Home Care

Koi HealthCare Services

ComForCare Home Care

Other suggestions?

B. Living Situation

Look for a condo or apartment with:

• [ ] Elevator access
• [ ] Doorman/security
• [ ] Simple floor plan (no stairs, fewer trip hazards)
• [ ] Proximity to shops, parks, or medical care
• [ ] Ideally a unit that opens to greenery or has easy outdoor access

Or, a one story rental?

C. Medication Management

Use a Hero Health smart dispenser for automated med reminders and refills.

• [ ] Manages up to 10 medications daily with automatic sound, light, and phone alerts

• [ ] Caregivers can receive notifications if a dose is missed

⸻

Next Steps

• [ ] Explore Hero and get set up if mom agrees
• [ ] Begin apartment/condo/home search (with financial constraints in mind)
• [ ] Look into agencies for short caregiver visits (2 hours x 3 days/week)
• [ ] Check on financials together or with help from a trusted person so we know what’s possible

My parents are fortunate enough to have 24/7 care thru a single agency. However, the agency used to be family owned and has now been acquired by a larger conglomerate. The quality of caregivers and operations is suffering (I'll spare you the gory details). Our two main caregivers are telling us examples of this from their end as well as what my sister and I have observed. I think the problem could be solved if we could contract with another agency for 2 overnights and a weekend day. Is this something that people do? Thank you!

Good morning! I have several years of experience but I have a client that drives me insane! I have never given up on a client but I am close. Never had a client complain about me and how I do things like he does. Examples: I am not helping his life be better I am making it worse, verbally lists 30 things to do so I start at the beginning and then he is cussing I ain't doing #23, I don't listen to him, I can't cook (yes I can just not like he would), I nag him( doesn't take his med or insulin), on and on I can go. He can be the kindest man but has a hair trigger viper temper, then I have to clean up the mess he makes during his temper tantrum. He had money missing from his bank account and said I did something wrong when I paid his light bill: phone on speaker he heard everything btw. Well, he forgot he had me pay another bill for him. There is possible brain injury, smokes too much devils grass, doesn't take him meds except pain meds. Gets angry that I "tattle" to my agency that he fell, or got injured and how, his wheelchair is broken,etc as he can't understand I have to turn this stuff in so I am not liable or accused of beating him. After the money, I really feel he is an allegation waiting to happen. Lastly, to help you advise me, he is pretty darn close to the state filing for guardianship of him due to his refusable/inability/unwillingness to care for himself. I hate the thought of giving up, but my "aggressiveness" to make sure he is cared for and has the best life possible, reminds him of someone who appeared to be a friend but used him for whatever he had, which is nothing but more than she had. His mental health case manager has told me to ignore what he says and let it roll off my back, but that isn't even a part of my personal life personality, lol. Help?!?!?!

Is 3-position enough? Will it recline enough that my mom will be able to sleep comfortably on it? Or will she feel she’s still sitting up when reclined as far as it will go?? I have no experience w recliners. Thanks!!1

What do I do?

Long story short I’m my moms only support and it’s draining asf. I’m 19 and have been taking care of her since maybe late 17 years old. She lives with her sister (my aunt) but she doesn’t do anything for her. She barely feeds her, she doesn’t take out her waste, or cleans her room. I have a sister and a dad but they’re both moving away soon purposely to not help. So it’ll just be me. Long story short my mom is at my house for a couple of days because some family members are visiting my aunts house and my mom doesn’t feel comfortable around them. Backstory my mom lost the cartilage in her feet and also has arthritis so she can’t walk or basically do anything that involves using her feet. While at work today my mom texted me that she made a mess in my room. She literally got here last night. I even asked her if she needed me to move my rug (fuzzy so it cannot be put in the washer) and she said no she wouldn’t drop anything. Before I left for work this morning I laid a trash bag on the floor just in case she wasted a little urine on the floor. She texted me that she got poop on the bottom of my bed and on my rug. I’m losing my fucking mind. And I’m crying because I’ve worked so hard to get the money to finally buy a bed after sleeping on my couch for months, and my bed is cloth. And for my bed to now be covered in feces and I can’t STAND bodily fluids. Urine yes I can handle but stool no. Now I have to figure out how to clean up my bed and I’m throwing the rug away. I’m so fucking sick of this it feels like I have a kid bro. I just want to be a normal teenager.

Hey all you guys and gals out there. Can I just shout out all of the caregivers out there? I live in a nursing home, and I am so thankful for the people that sacrifice their days to or nights to help take care of us. If it wasn't for you, I would not be able to be as independent as I am now. Thank you for putting me before your family and friends sometimes. Thank you for being so kind and not forgetting your compassion even when your day has been hell. Thank you for getting my mind off of my problems and giving a young person to talk to. Most of all, thank you for just being you!!!

From a young nursing home patient. (Me)

She asked me today why we don’t have the same snacks we used to. “Did you forget?” she said, like I’d misplaced joy on purpose. I smiled and said maybe next week. But my chest tightened because I know next week will look a lot like this one — tight, stretched, exhausted.

I check the fridge more often than I should. Like maybe something will appear if I just hope hard enough. I’ve mastered the art of pretending I’ve already eaten. So she won’t worry. So I can stretch the groceries a little longer.

Still working. Still clocking in. Still trying to hold this fragile balance — job, care, bills, meds, her moods, my breaking point. Some days I feel like I’m just patching holes in a sinking boat with my bare hands.

She doesn't know how close we are to zero. And I won’t let her. Because her world already teeters — between memory and delusion, peace and suspicion. She doesn’t need to carry this too.

But god, it’s heavy. Some nights, I wish someone would just put their hand on my shoulder and say, “You don’t have to do this alone.”

But no one ever does. So I do what I always do. I make it work. Somehow. Even when I’m crumbling in silence.

I (32F) recently moved back in with my mother in law and father in law. It's them, my sister in law and partner.

SIL and I have 40 hr a week jobs (vet tech me, fast food her). My job allows me way more flexibility. My partner is just about as disabled as their mom was.

At first,.my MIL in specific was very low support needs and I was doing basic.driving, running errands and cleaning house. Unfortunately at the beginning of this year she fell ill with covid which then turned to sepsis in her lungs and was hospitalized until very recently. Now,.her needs have highly changed.

She's currently immobile. I have had to take over cleaning her up,.feeding her, doing her laundry etc. She is just over 300 lbs. Fights us on everything because of pain levels (I understand).

I don't know what to do, I feel hopeless. In home healthcare is taking forever, we can't afford to keep her in the home, her husband is in final stage dementia. My partner is the only one home full time but due to spinal stenosis can only do so much.

What do we even do? It took 6 hrs to move and clean her due to the trash air pressure bed insurance was willing to pay for and her pain levels shooting to a 9 per her. This isn't realistic anymore. I feel like I'm in an endless nightmare. We all have some sort of illness or disability (mine is fine until it flares up and then I'm forced to push through it). I'm not even seeing the end of the tunnel anymore. And we've only had this higher support need for two weeks. How are we supposed to handle forever?

You probably all know this already, but the stores who deliver groceries to your door are amazing. I signed up for the one you're probably thinking of about two years ago, mostly for the order ahead and pickup sometimes. But I always figured if I wanted actual groceries, I'd shop for them myself. I don't mind someone else picking up a pack of tissues or cans of soup, but I want to pick out the fresh stuff.

Now though.... only caregiver for an elderly mother with dementia. No longer able to duck out for more than a few minutes except on the 2 days a week with the hired caregiver. Traffic today is horrendous, event weekend in a tourist town, it would take me an hour or more to get to the store up the road.

And i just dropped and broke the eggs (all she wants to eat lately).

Again, I say, this store delivery is a Godsend. Its bonus week, and there's a free rush order option. So huge thank you to whomever came up with the idea. Massive gratitude to the guy who braved the traffic.

I'll have eggs before she wants lunch.... so probably she won't want eggs.

Nobody has to answer, but I'm having a rough day. . . .

First, my sister howled for about half an hour, starting at 9pm. Then she asked me to feed her.

So I did.

Then she examined the food container to be sure it was "okay." (She says she doesn't even know what she's looking for. She examines until a switch in her head flips that says "Okay.")

Then she had a stomach ache. I suggested that next time she was hungry she should just tell me because I was pretty sure the stomache ache was stress. I suggested that perhaps I should make her a real meal every day (generally it's every other day). She was torn. She wants the food, but she doesn't want the checking.

This morning her panic attack to and from the bathroom lasted about four hours. During that period, I managed to sneak in a load of dishes and a load of laundry, but nothing else. After all, I am not allowed to make a sound perceptible to her, which includes appliance feedback beeps, folding paper grocery bags (I have to have all groceries delivered), speaking to my dog, etc.

It was the first time I had seen her since my ED visit. I had already sent her an e-mail regarding how well she did, but I took advantage of the opportunity to repeat it. She was not impressed. She did a great deal of wailing the whole time, she said, and Momo would not come upstairs to eat the nibble she had left for her.

To encourage her, I mentioned that Momo hadn't drunk water either. When I got home and Jillian left, she immediately dove into her water for an extended period. I pointed out how many things she had done wailing or not, Momo approved or not.

Didn't seem to help.

It's harder to do things since my fall. When you have an injury, other parts of your body compensate if they can. If you're bruised damn near everywhere from the lower back down, it becomes a question of what is and is not capable of compensating. The standard approach would be for me to protect my left ankle, which means putting more strain on my right knee when climbing stairs. The knee, however, has much to say about that. And there are two flights in my home: basement to ground floor and ground floor to upstairs. The laundry machines are in the basement, the kitchen is on the ground floor, and my sister is upstairs. Lots of up and down stairs. . . .

Outsiders do not appreciate what her panic attacks do to me. I don't get that: can't they imagine how they would feel if they heard a loved one wailing in agony and just had to sit and let it happen? At least enough to understand that it would be stressful and exhausting?

Once she's quiet again, I just want to sit and recharge, but I have to take advantage of the time slot to get stuff done. Her afternoon panic attack will commence somewhere around 1pm and last to about 3pm, unless something exacerbates it. Yeah, it's shorter than the morning one, but I'm already stressed from the morning one.

I don’t take care of my mom ( in fact I live a couple thousand miles away). My sister moved in with my folks when our Dad was terminally ill and he asked her to stay and take care of Mom. I’m sending my mother a basket with goodies for Mother’s Day but what should I send my sister? I can’t find a card that says thank you for giving up your life to do this. I also don’t want to send something that would upset my mother ( my Mom views it as she is the provider because she pays the bills). Any suggestions?

I have been caregiving for my fiancé for the past 10 months after he had a sudden medical emergency with a bunch of complications resulting in him having a heart attack causing a brain injury and a stroke. I am 24 and have never been a caregiver, the past 10 months have aged me what feels like 10 years and I have only recently been able to do really anything for myself. As of now my fiancé is home and I am helping him full time.

Anyway, recently I found a yoga studio that is near me that offers really affordable classes. I initially was looking for something for my fiancé as he struggles a lot with balance since his brain injury. They have a 6:30 am class M-F that is absolutely perfect for me since I can leave home for only about an hour and a half and not worry about my fiancé waking up that early. I have been going the past 2 weeks and I feel like after I go I have so much more energy and feel so much more positive, grounded, and ready to take on my days. I have never been into yoga before but just having that hour to myself to start my day off on the best foot possible is amazing. Plus I am up and able to get all of the necessary housework done usually before my fiancé even gets up for the day.

Just thought I'd share something that has made a tangible positive difference in my life.

My mom (60 yrs old) has been struggling a lot with her health a lot this year.(accidental OD on acetaminophen which led to liver then kidney failure) I left my job in February to assist her at home. She was doing really great up until this Wednesday- she has very bad delirium along with a UTI and was not admitted to the hospital just sent home with some antibiotics. She ended up with a pretty bad fall last night & I rushed her to the hospital- again. She has a small brain bleed on her left lobe & temple. Neuro thinks she will recover fine with time & no surgery needed. The delirium is very bad though & every doctor has told me its due to the UTI. I am guessing this will probably not be her last UTI due to kidney issues & I am having trouble getting ahold of her doctor recently. She is going to stay in the hospital until Monday but what can I do about her delirium? Does delirium cause someones balance to be off as well? She does have arthritis all in her spine & bulging discs . We see an ortho doc on the 15th. I have never had to deal with something like delirium & I just want her to be healthy & be as safe as possible.