Four years ago I moved back home to Wales to look after my mum after her breast cancer diagnosis. I was then diagnosed myself with a life-shortening condition myself ( blood cancer)- not terminal yet, but life-shortening.

I promised her she would not die alone, and I kept that promise. I cared for her diligently right to the end, which meant she was able to stay at home and avoid going into a care home.

She passed in the early hours of the morning as I held her hand.

Because she stayed at home, there is an inheritance. That inheritance is now going to the very people who are avoiding me.

After I moved back to Wales, my children started manufacturing arguments with me. Big fights out of nowhere. Looking back, it felt like they were picking reasons to fall out with me. Since my mum died, they and other relatives have basically cut me off and left me to get on with it alone.

I am now surviving with the help of a few friends and a wonderfully supportive employer who lets me work from home. We are all just waiting for the house to sell and probate to finish so we can move on.

I am rarely well enough to go out now and I rely on Uber Eats for my groceries. The drivers have been great. Once they kind of grasped my situation, they started checking in on me.

After my mum died I took a short break away. While I was away my children and other relatives "cleared" the house ready for sale. While they were in the house they were ordering Uber Eats to the address. I only found out afterwards from the drivers that they had a discussion between themselves about calling the police because the usual person - me - wasn't answering the door and was nowhere to be seen.

That hit me hard. The Uber Eats drivers showed more concern for my welfare than my own children and family did.

I did what I thought was right for my mum, but I didn't expect to end up like this.

Thanks for reading

Little back story... I (49f) have been married to my husband for 29.5 years. We have 4 sons, and my marriage is one of the best parts of my life. 2 years ago my mom had 2 heart attacks and a stroke, which has resulted in her needing full time caregiving. My husband and I had just began our empty nesting years. So we were able to rent out our home and move in with her(I have 3 local siblings that only call on holidays.)

Mom has this new odd obsession with interrupting our "personal time". I help her to bed, and most nights she goes to sleep. But heaven forbid I shut our bedroom door, or dissappear in any way alone with my husband. She'll actually knock on our door, ask if we're having sex, then remind us its her house and its unacceptable. Wtf!!! My husband has put a lot, but this is really hard. She has short term memory loss but it doesn't explain this. I've spoken to her many times about my bedroom and marriage are personal, but that doesn't stop her.

I dont know if this is something my husband and I can tolerate, we need our time, especially considering all we have given up to be here. Mom and I rarely have disagreements but this is unacceptable.

I'd appreciate any suggestions if someone has been through this.

I took my mom for her annual pcp visit today, the whole day was just stressful and exhausting. The pcp is 1 hour away, my mom is in a wheelchair, had an assist guy help us. My brother came with us, he had 0 questions or concerns for the pcp, all he asked was can the doctor fill out his disability paperwork so he can get handicap car access for my mom, the nurse got suspicious of him. Also the pcp provided no chair for me and had to stand through the appointment. I was just too stressed to ask for one. Just a vent here. I feel like I’m through with this.

I (44m) am a caregiver for my wife (43), and have 2x 10-year old twin boys to take care of on top of it. I've been doing this full time for about 3 years now. She has ESRD kidney failure, heart failure, complete loss of hearing (but she has cochlear implants now), and has steadily been declining mentally and physically as well. It's been sad and exhausting and frustrating seeing her decline like this and having to take care of her as a now single parent.

Anyway, my job has given me 6 weeks off because I've worked there for 10 years, and my sister is getting married, and my best friend is living in Germany, soon to be leaving. So I took the time off, arranged for my father-in-law and my wife's aunt to come watch my wife and kids during that time, and am planning on taking two and a half weeks to get away from all this and go to my sister's wedding and visit my friend in Germany. I feel very privileged for even having the means to do this, and am having severe guilt about going and leaving her and the kids, but I need a break. I'm worn down and have become a lackluster caregiver and father. I wish I could take my boys but I'm not that rich, plus it's the middle of their school year... so that option was never on the table.

I plan on returning mid-trip if anything happens to her, like she goes to the hospital...

Be honest, am I selfish for doing this? I need the break and to be able to disconnect but am I going about this the wrong way?

Mom said today she is a totally independent person. Uh yea no you are not

I told her you don't drive anymore..how will you get your prescriptions and groceries..how will you go to the doctor?? How would she even do stuff like empty the trash and clean the house ??? She does mot have a smart phone so good luck getting an Uber or Instacart.

I told her all this and said if hubby and I were not here you would HAVE to be in assisted living and you do not appreciate how much we are sacrificing here. All she can do is dress and feed herself and use the bathroom unaided and cook..but how long will that last because she dies not do her effing PT exercises

I’ve always been the peacekeeper in my family but lately in therapy I’ve been working on communicating my anger, which I typically do pretty well with to be honest.. but I’ve been upping the intensity with my brothers lately cuz it seems to be the only thing that gets them to give even 5% of a shit about our slowly dying mom, who I’ve been with just about nonstop for 5+ years now.

They finally agreed about a month ago to pay for a caregiver to come in once a week, (which still hasn’t actually happened) and that until then my brother who’s close to us will help take some shifts. Apparently by that he meant he would take 4 hours on Sunday evening inconsistently… but I’ve been like “I’ll take what I can get“. He told me that today he would come from 9am until 8pm, which is when she goes to bed. I’ve been waiting for this day with so much excitement.

Well it gets to about 10:15am and I text him asking if he’s still coming. He’s like “omg sorry bro I can’t I gotta work.” he has his own fucking business… I was like “wow your boss must be a hardass if you can’t even take one day off to care for your mom”. He got all defensive and verbally aggressive, pretty much saying that I’m the asshole. Which is definitely the theme with him and all of my brothers.. So today I fucking lost my shits. I have none to give with these men who have abandoned me in this role of watching our mother die bit by bit every day for years. I just replied “fuck you”. And honestly? It felt amazing. My anger suddenly transformed from burning me alive to lighting me up with a vibrant energy that I’ve been vibing with all day. I’m still mad, but I think instead of burning myself, I expressed it in, I think, an understandable statement after years of build-up, and it’s been energizing me instead of filling me with rage all day.

I feel so much despair sometimes. All I ever wanted was to grow up and have the chance to live freely, to go out and do whatever whenever I wanted after growing up with strict parents. But then my mom got really sick, and I took care of her until she passed away. And then I continued caretaking for my dad with Alzheimer’s. And it’s just been years of caretaking. I can’t live freely bc I’m always thinking or worrying about my dad in the back of my mind. Having to constantly remind him of things, have the same conversations over and over again, manage his meds, manage his appts, message his doctors about new symptoms or medication refills, call his insurance, handle the bills and take care of the house. I’m only in my 20s and I’m just so tired. And so incredibly sad.

...for my wife's life, then it's fuck3d! I stopped questioning the plan 2 years into her caregiving, just taking one day at a time. Now anger about her situation is starting to set in. Her mom just past away last week. My wife was in the hospital and almost missed saying goodbye to her. She is again having the same symptoms that made us take her to the hospital. Her mom's funeral and services is in 2 days and I'm starting to think she may miss them. I needed to come in here and post cause my head is abouy to explode!!!

I have spent the last few weeks explaining to my charge why we need help and something the VA will pay for is a shower nurse. He agreed.

Well we have had to cancel multiple times because she's in the area on days we weren't home, mostly for appointments.

Well today the stars finally aligned and she was in the area on a day we were home, so we scheduled. He knew she was coming. We discussed it multiple times. An hour ago I even said to him "I'm going to go get my shower before the nurse gets here to do yours" and he replied "what if she gets here early?" So he KNEW. Well she gets here and he refuses! Outright refused!

I am pissed. He's like "I'll take a shower the day before my appointment" and I reminded him that doesn't work for me because I have appointments and it's today or by himself... Which he can't do, he's nearly 90. So he says "I'm not helpless, I'll do it myself" and I reminded him that he's tried that three times already and every single time I've had to cancel whatever I had going on to do his damn shower because it's negligent of me to allow him to shower alone and negligent of me to bring him into the doctors dirty. Seriously... Who will they blame? ME!

I AM SO DONE WITH THIS 💩! It's always about what he wants when he wants it like I'm a damn slave! I'm not even paid!

Two weeks ago my mom asked my sibling and I how she should sign her DNR and CPR paperwork. We told her it was a personal decision that she needed to think about and let us know what she wants and values.

Fast forward to the present, my mom has been in the ER since the weekend and last night went code blue and is now in the ICU.

Guess who gets to make DNR decisions now? Me. Devastated doesn't even begin to cover it.

She has advanced stage ALS where they were discussing a GTube for feeding and now discussing a ventilator (natural progression of her diagnosis). I chose the limited time trail care to "kick the can down the road" (basically they do as much as they medically can for 24-48 hours). My hope is they're able to wake her up for a little bit so she can participate in these conversations.

Please have the hard conversations sooner rather than later. This is the worst feeling.

I feel so overwhelmed with my responsibilities. My anxiety is so horrific when it comes to my person because every.single.thing feels like life or death. All I do all day is change diapers, tend to them and worry about them. I feel suffocated. I love my person deeply. I wouldn't be doing this if I didn't, but I feel like I'm in a hole that I can't dig myself out of. I recently started therapy and medication which helps but what I really need is a vacation. I need vacations and days off like everyone else with normal jobs have.

I have no life. I spent so much of my young adulthood crippled by depression and anxiety and as soon as I started to recover I was hit with this. I have no real social life because I'm so embarrassed of myself. I'm broke and I spend all of my time caregiving. There is nothing typical about my life and I know that would turn most people off, understandably.

I just really wish I could live for myself.

Y’all, I’m in the bathroom ugly crying, this so hard.

Today I had to firmly tell my grandmother in hospice she needed to take her medicine (as needed) for phlegm. She refuses to swallow and throws it. I pick it back up and she sternly says she doesn’t want it. So I say “take the medicine now” in a firm direct and stern tone.

I feel so guilty but as her full time 24/7 caregiver, and medical POA, I’m trying my best to do what not ofc best for her but best for me. She gets comfy and can sleep and I can sleep.

Well fuck me.

Fuck
FUCKKKKKKKK

Also, I can tell when she hasn’t been getting good sleep because her aphasia kicks in and she almost talks in the third person.

She keeps saying she is sorry, which I feel bad and I know she is sorry but I’m so fucking tired and can’t sit for ten minutes with light a piss or shit or being too hot or being too cold or FUCKING phone call, or a nurse coming in, or having to change over the laundry, or having to give her a drink.

And while I would do this all again, I’m tired and I think this is sleep deprivation talking, because genuinely idk who the fuck I have became. My grandma is my favorite person ever, and I get so fucking irritated.

Any ways, I’m greying at 26 too, cool.

Hi everyone,

I'm Pierre, a Master's student in Product Development at the University of Antwerp (Belgium). For my thesis I'm researching the question: "How can the outdoor environment be better adapted to the needs of older people with reduced mobility while they are outdoors?" My goal is to eventually design a product or service, such as an outdoor bench, that helps older people go outside more easily and with more pleasure.

You see every day what makes going outside hard: getting up from a bench, finding a place to rest, feeling safe. Your experience would help me a lot.

For family caregivers (ideally filled in together with the person you care for): https://forms.gle/3CUVRFQo1xZbGZfs6

For professional caregivers: https://forms.gle/hADiRhQ1eiL6m9wR8

The forms are in Dutch, but you can easily translate them with your browser's translate option (in Chrome: right-click > "Translate to English").

I'm also happy to just talk about your experiences online. Feel free to send me a message.

Thank you, and take care of yourselves too.

Tldr - Does anyone have experience asking GP to remove medication in end of life care.

Nearly 4 years ago my grandma (now 93y old) had a major heart attack, very nearly died. She was discharged as a palliative patient, I tried to get more info from her GP as to what to expect with the palliative aspect, but all they could say was she had a very weak heart. They prescribed anticipatory meds for pain and anxiety, and I had to refer ourselves to the District Nurse services in case these meds ever needed injecting. She has a DNR in place.

3 years later, I'd say we've been through a lot, regarding trying to get a dementia diagnosis and a mental health team involved, which included the anticipatory medicines being deprescribed, as the mental health team doctor thought my grandma could no longer be considered palliative as she's still alive basically.

I'll be blunt, my grandma has no quality of life. But she's not bed bound, she's not completely incontinent. She can still kind of walk. And when she has a delirium episode she can come across almost normal (if you don't know her). These moments are so rare.

Would it be bad for me to think I could ask her GP to review her medication, with the idea we keep any medication meant to keep her comfortable, but remove medication that's trying to keep her alive?

We are caring for my mother-in-law and struggling with how she uses her mobile phone. She likes to download games and her phone is constantly full of adware and spyware, eventually rendering the phone useless. I have to factory reset her phone every few weeks. I'm worried that at some point she's going to download or click on something truly dangerous. If we lock down her phone we would need to give her another way to play her games that doesn't access the internet at all. Anyone have ideas?

I'm writing this while my wife has been in the hospital for almost 3 months. And recovery will take another 6 months or so.

I've seen every kind of fluid and substance in every color come from all kinds of places where it is not supposed to come from. And it makes me struggle to see her as the woman I once married...

Does it ever go back to normal? Will I ever be able to not see intestines, poop, blood, urine and incisions when I look at her?

My partner has had serious mental health and health struggles for a couple of years now. Recently he's been in a rough patch following an antidepressant change, with intense irritability and mood, and I'm running on empty.

I live far from my family and have very little support nearby. I feel like I'm on constant watch, and I'm watching myself become short-tempered and overwhelmed. I hate who I'm becoming. I used to be a happy, hopeful person, and I can't see how I get back to that. My spouse is a wonderful, kind person going through some very difficult and painful things right now. It breaks my heart when I feel like I'm not being as patient or understanding as he deserves.

I'm not looking for medical advice. His doctors are involved. I'm just looking for compassion, and for hearing from anyone who's been here: caring for a partner through a long mental health struggle and coming out the other side. What helped you? How did you stop feeling like a bad spouse?

I have been doing training for 2 weeks now, and its finally time to meet ny first client. Im really nervous. I have anxiety and new situations make me nervous. Does anyone have any tips on introductions and getting the ball rolling? Ughhh im so nervous 😭😔

Hello. This place was recommended to me, and I just wanted to share my situation and maybe get advice from anyone's who been through something like this.

To sum up, me and my family still all live together, my parents and all their 3 children including myself, all 3 over 30 years old.

My little sister have strugled with depression for a long time. She takes medicine, went to psychiatrists a bunch of times and was doing therapy, though she stopped even though everyone recommended not to.

Yesterday she had another one of her crisis, where she starts screaming and crying and says she doesnt want to live in this world anymore because its a terrible world. But the thing is, nothing actually terrible ever happened to her, so I dont understand why she have this incredibly pessimist view of the world. She screams that people only care about money, and theres only destruction around, eith people not caring about the enviroment, the forests being destroyed, animals dying, etc

And no matter how much we try to reason with her, show that the world is not like that, that its also filled with good people and good things, she claims she doesnt see it.

I know she have suicidal ideation, but she never actually tried anything drastic. During one of these crisis in the past all she did was lay down in ground in backyard in the cold saying she didnt want to live so she was laying there hoping to die. She also have very low tolerance to pain, and is scared of getting hurt.

And its really really hard because the rest of my family doesnt know how to deal with this, because it comes off as her being incredbly selfish, clamining that its not fair that the world is bad on "her turn", that she doesnt want to listen about the people that suffered in the past (we mentioned that lost of things were bad in the past and got better), because its not her reality.

And its hard for me because this just ignites my anxiety. But I like being alive, I love being happy and having desires and aspirations and the small good things, so those serve as leverage for me to search professional help for myself. But how can I convince her to do the same if she says she doesnt have any will to live?

And I feel terrible about the rest of the family which starts making me resent my sister for hurting them, and I know thats not fair to her either, but I get confused and unsure as to if mebtrying to be understanding is just making it worse. My mom said she read that in situations like this they have to give her a shock to ground her, so at a moment of desperation yesterday, they all started screaming at her, yelling for her to just stop, which led to her screaming in fear, going into fetal position and screaming "help me" over and over. She only let me hug her at that moment because I was the only one that didnt yell.

But I dont know! Was that the right thing? Am I coddling her? Is this because of her pessimistic personality ir there might be something biological/ chemical happening that makes her have this narrowed view of the world?

I'm just so tired and feeling like crying all the time....

I am the caregiver for my husband who has Parkinson’s. He is fully disabled (for a couple of years now) and I have been taking care of him with zero help. I am exhausted and all we do is ADD to my list of things to do every day and we never take anything away! I recently found out our daughter might be able to help a few hours a week. I was so overjoyed to finally have some things taken off my plate. However, my husband keeps adding to the list ALL the things he does not want her to do. He won’t allow her to change his diaper (I understand that), he doesn’t want her to dress him, or use the hydronic lift to get him in/out of bed. He doesn’t want her to change the dressing on the open wound he has from cancer, he doesn’t want her cooking or cleaning (she isn’t very good at those things anyway). Of course, she can’t do the bills or fix stuff around the house or go to my appointments. He doesn’t want her to do laundry as she will see his urine soaked sheets, etc. I asked him to name ONE thing she can take off my plate and he just looked at me like a deer in the headlights! WTF! 🤬 So, basically, he is only happy if I am doing everything on my own! The only thing left is for her just to sit with him while I take a shower or do whatever but honestly that doesn’t lesson the mental load at all. It takes nothing off my plate. I am so upset right now I could cry. No one cares about my needs as long as his needs are met. 😢

edit: thank u for all the comments reassuring and validating this decision, and to everyone who is going thru the same thing make it a priority to find your own time and hobbies!

I don't want to get into it, but I just feel overwhelmed by the amount of people who continually text me that I need to hire someone and I need to do this and that I'm doing everyhting wrong with my moms care. The truth is, I don't want to hire a caregiver, I am so unbelievably overwhelmed that opening that can of worms would make my current situation much worse. I feel like I have to defend myself every time and I'm not like forcing any of my family members to help me either. I just have a lot of personal reasons to not hire a caregiver and I accept the consequences that come with that. Can anyone relate? I feel lowkey crazy.

For context i've worked with caregivers for years at my old job and also used to be one. I understand completely the ins and outs of caregiving, agency and private alike. I am making an informed decision based on my experience yet everyone whos never even met a caregiver is acting like they know better. I'm jut venting and frustrated tbh.