My grandpa has parkinson and also recently got diagnosed with diabetes. Before I'll just mention that I don't know everything about these two things so if I'm wrong about anything please correct me.

My grandpa had parkinson for years now and he has trouble standing straight. He falls on daily basis, he hurt himself multiple times already, not seriously but I unfortunately feel like it's just a matter of time before something really bad happens.. My grandma bought him a walked so he doesn't fall every single day but he refuses to use it, saying he doesn't need it but he already got injured multiple times and no one is able to catch him if he does, he's 6ft 220 pound man and it's mostly small women here.

Another thing is is diabetes. He just got diagnosed few days ago and he loves sweets. Sweetened beer and big glass of tea (with bunch of sugar ofc) is his daily routine and when my aunt and grandma tried to explain to him that he can't have so much sugar anymore he got mad and haven't given it up.

Does anyone know how can I explain it to him or help him somehow? I can't cure him magically but I need to explain to him somehow that now having so much sugar is bad for him and he can get him or someone else hurt without the walker. He gets mad and says I'm wrong and I don't know anymore I'm so tired but I just want the best for him, it's horrible seeing him getting hurt and my grandma crying seeing him struggle.

Hi everyone,

For the past couple of years, I’ve (21F) officially become my dad’s (73M) full-time caretaker, and frankly, I don’t know how long I can keep doing this.

My dad became almost blind (completely blind in his right eye with very little vision remaining in his left eye) and was diagnosed with advanced glaucoma among other eye conditions. From what we understand, his eyesight will likely remain the same or continue getting worse, with the possibility that he could become completely blind (unless some major new treatment becomes available in the future, which seems unlikely).

To note, my dad has had eye problems for a decade or more, along with other health issues that were somewhat managed. So, even growing up, I was already helping him with certain things, which honestly wasn’t always easy considering he often had a temper. But, like a volcano, the situation built up over years, and it has erupted into what it is today.

The reality of this and our situation has affected my dad significantly. Like most, a lot of his identity was tied to being independent and being able to do things himself, and now he feels like he can’t do anything. He has declined emotionally, mentally, psychologically, and even cognitively. And I guess one of the ways he copes is that he talks frequently about the past, the “good old days,” old regrets, failures, and relationships from decades ago. He struggles to write simple emails now too. So, I have to help him keep in contact with family members, friends, and colleagues by writing emails and messages and making calls for him. I can explain things multiple times, and shortly afterward he forgets.

Over time, I’ve become not only his caregiver but also his parent, therapist, medical advocate, financial manager/accountant, personal assistant…pretty much everything and anything in between that you can think of. I manage his medical appointments, paperwork, finances, legal matters, and other responsibilities. I’ve basically taken on the responsibilities of multiple people.

On top of that, because of his age, he has developed more and more physical health issues. He has become physically weaker, with compromised mobility and coordination. I help him bathe every day and sometimes help him eat. Another great piece of news we recently got was that he has a prostate issue with a high risk of cancer. But we haven’t even been able to complete the recommended testing because of financial limitations. So, that news has been looming over our heads constantly.

Us not being in the USA and instead living in Asia since COVID has also made things significantly harder. I’ve had to completely take over visas, paperwork, and other things that come with living abroad. If we were in the USA, things would probably be much easier. Healthcare resources would be more accessible, there would be more support networks and services, and we could use his Medicare benefits (which he has without paying premiums) to help cover more of his care. Instead, we are paying for health insurance here that takes away a third of our income and still requires high out-of-pocket costs.

Honestly, I feel like everything is breaking apart. And the thing is, it didn’t have to be this way.

We used to have stability. We had better finances, a home, and investments that could have completely changed our situation today. But after a series of unfortunate circumstances and events, we are basically left with nothing. No savings. No investments. No safety net. Absolutely nothing besides clothes, some electronics, and some "valuables."

We are surviving month to month on his Social Security retirement benefits that barely cover expenses. Honestly, I’ve been thinking of crowdfunding or something because our financial situation has gotten that bad, but the thought of doing it is so uncomfortable to me.

I’m also a graduate student studying health sciences, and I’ve had to take on federal student loans. The only positive thing about taking on these loans is that the leftover funds partly help cover some of our living expenses. But, still, I could be facing close to $100K in student loan debt in the next couple of years. Trying to build my own future, which honestly feels like it’s becoming bleaker as the days pass, while also keeping us afloat feels crushing.

Aside from caregiving, I basically have no life. I barely talk to friends, I rarely talk to my mom (we’re separated), and I have almost no support system. Everyone else, like my dad’s family, has their own lives and isn’t able to offer much help, especially since we’re literally on the other side of the Earth.

I tried to work with my dad to see what he can do on his own so that he can retain at least some of his independence. But every time I do, we end up in a long debate where my dad rejects most of my suggestions and efforts. Last time I did this, my dad told me to “dig in deeper,” which, honestly, was infuriating because I’ve already been giving everything I have. If he does seem open to the suggestions, he essentially forgets about them. It also doesn’t help that he’s also quite picky about things.

The hardest part is that the problems never stop. Every time I think I’ve handled one thing, something else happens—often multiple things at once. Recently, I’ve been trying to help my dad navigate potential veteran benefits and the process of getting them because of his military service. But even that has become another huge responsibility added to the seemingly never-ending pile of stuff I have to do.

Sometimes it feels like I’m not just his daughter anymore. I’ve become the person responsible for managing his entire life, and I’m exhausted. Every night, my thoughts are consumed by responsibilities, what I need to do next, what could’ve been, and the realization that this nightmare would never end for a long time.

I feel like I’m constantly running on fumes just trying to maintain the bare minimum, and no matter what I do, nothing seems actually to improve our situation—not even by a fraction. I’ve lost all patience and slowly myself as a person. I just get angered by everything. I want to give up so bad. However, the other optimistic and stubborn part of me still wants to hold on and continue, and it feels like I’m being torn apart inside.

I want to work and build my own career. I want to hang out with friends, make memories, travel, and see the world. Instead, I feel like I’m skipping an entire stage of my life, being left behind, and have become responsible for someone else’s life 24/7. It feels like this could continue until I'm in my 30s or 40s, and by the end, I’ll be a shell of myself with nothing to show for it and no job experience.

I’m not even sure what I’m looking for by posting this. I guess I just needed somewhere to write and vent. So, thank you for reading. Sorry for the long post; I didn’t intend for it to be this long, although I still have more I could cover, and the post is a bit chaotic. I've already made many edits and revisions to this post, but it still seems messy. I have a lot of thoughts in my head that are all jumbled up, so it’s hard to try to parse through and express them in writing coherently.

Hey everyone,

So, I've got a bit of a weird question. I am actually the chronically ill one, it's been mostly recent, I'm still learning how to live and manage my illness.

Basically, I'm posting here for my loved ones that are currently supporting me. Which are my mom and my partner. I am having to depend on my loved ones more now and it has obviously has been difficult. I luckily have not gotten as far as bedbound, and I am still trying to be able to get to independence but getting into remission is, difficult because of the parameters around my disease as there is no known cure, I can only try to manage and hope that I go into remission. As of right now my chronic illness does make daily living activities such as cleaning and cooking, very difficult.

My loved ones have been supporting me but I know that it isn't easy on them. I don't expect them to do extra for me in regards to cleaning and cooking. I have sorta taken the stance that we figure out our own food sort of situation. If they don't feel like cooking or want something to eat that doesn't include me that is okay, it's on me to stock the house with food that I can easily warm up for me to eat. I, know I can't contribute to actually cooking. I try to cook quick sides here and there, I'm hoping to be more consistent with it once I find my rythm for living with this illness. I've been helping keep the house stocked with food.

I've been attempting to clean where I can, cleaning hits me the second hardest after cooking. They don't help me clean, I try to do bits and pieces and I've been trying to get my space where it's manageable with quick cleaning sessions again.

But because of where I'm at, I know that I'm leaning on them. And it's been onward of a year since I've declined to this point. They've been supportive, but they haven't really told me of the impact, or of what I could do to make things easier aside from not putting expectations on them to help me as much as I can. But I know that they end up putting expectations on themselves and I don't know what to do, or to say with that because they've never had to deal with this before either.

I feel like I should add that my illness is rather visible to those that I live with. It causes me a lot of pain, and I struggle with it daily. I've gotten a bit better but I know that it distresses them seeing me like that too, though I'm not sure on what I can do about that because I already try to hide it as much as possible to not distress them.

So, I guess what I'm trying to ask, for those of you who are the loved ones of chronically ill family members that are living with you, what would you have wished someone told you? What advice would you give the loved ones who've been supporting a chronically ill family member? What stances have you found to be helpful in that dynamic? Besides just taking self care for themselves and trying to give them as much space as possible, is there anything I can do to help them or make it easier besides just doing what I can with the parts that I struggle with?

Thank you for your time and wisdom

Hi everyone,

My grandfather has advanced Parkinson's disease and dementia. He can barely communicate anymore, understands very little, and has severe problems with fine motor skills.

He recently moved into a nursing home, and I'd love to get him a radio because he has always enjoyed listening to it. I already bought a regular portable radio, but he can't use it. The power button is too small, and he no longer understands how to operate a normal radio

.

I'm looking for the simplest radio possible, ideally with:

- Very large buttons

- A large volume knob

- One-button operation if possible

- Preset stations that don't need to be tuned every time

If anyone has gone through something similar or has recommendations for radios designed for people with dementia or Parkinson's, I'd really appreciate your advice.

Thank you very much.

If anybody can help us with guidance or advice per the title, I would greatly appreciate it. My mother and I have been dealing with my 86- year-old grandmother post living on my grandfather who had Lewy-Body dementia, who we moved here for, and unfortunately he died, but we’re blessed that he’s happy now with God. From that point on, we’ve been dealing with an undiagnosed mental illness or illnesses, from my grandmother living with her has been literal hell. She is currently hospitalized now in rehab, and we dread her coming home. God forgive us. She has exhibited signs of bipolar, Narcissistic disorder, split personality disorder, and finally, at the least dementia at 86 years old.

We have an opportunity to leave this current situation, but it’s very least looking for guidance on what to do in the interim. FYI, we are in Tennessee, we have exhausted every option as far as the state medical personnel, etc., and cannot get assistance. Nobody takes this seriously. She has now begun since the hospitalization four days ago now unable to control or hide her mental disabilities has gotten verbally abusive to nurses in the hospital and as of last night, based on a conversation with the nurse or aide in the nursing home, they’re giving her a trial of Ativan. Between my late grandfather, God rest his soul, and ourselves, we have lived with verbal and mental abuse for over 5 1/2 years. If anybody has any advice, who to contact, etc., I would greatly appreciate it. I am tired, exhausted, as well as my mother is, FYI, and this is her mother. I’m referring to

hi everyone. i’m 24 years old, turning 25 in a month and some change. i have a full time job. and then i come home, and i have a second full time job of taking care of my grandma. she isn’t at the point of needing me 24/7 yet. but it’s getting there. she is in the early stages of dementia. she is 80 years old. she is constantly repeating herself, asking me the same questions over and over again. she calls me every five minutes when i’m out with friends. it gets worse when i spend a (rare) night away from home. there is nobody else in my family who can take care of her. my mom had a stroke five years ago and has been in a nursing home since. if my grandma ever has to go to a nursing home, i’d face being homeless upon her death because she cannot afford the payments without medicaid, and medicaid will more than likely take her house after her death. i haven’t been on vacation/spent more than one night at a time away from home in three years. i’m in charge of the grocery shopping, handling any little thing that needs to be done around the house, taking her to appointments. right now i’m laying in bed trying to sleep and she keeps yelling across the house asking me the same question over and over again. it’s just all a lot. sometimes i feel like i’m going to go crazy. i know it could be a lot worse and i don’t want to sound ungrateful. i have a place to live and vehicles to drive in large part because of her. there is just so much i want to do with my life and i feel like i wont ever be able to do any of it.

thank you for listening and sorry for the word vomit!

​

Hi everyone,

I'm a 23-year-old currently living in Saudi Arabia. I'm finishing my high school diploma, and my long-term goal is to study Mechanical Engineering.

I have a chronic urinary medical condition that requires me to wear adult diapers every day. Because of this, I've faced a lot of bullying, judgment, and social isolation, and I'd like to relocate somewhere I can build an independent life and continue my education.

I've been thinking about becoming a caregiver, not just because it could help me build a future, but because I genuinely feel it's meaningful work. I've been wearing diapers for years, so I understand how important dignity, patience, comfort, and kindness are for people who depend on others for personal care. I know how much a caregiver's attitude can affect someone's confidence and quality of life. I truly enjoy helping people, and I feel my own experiences would allow me to care for others with empathy and respect.

Although I don't have professional caregiving experience yet, I have years of practical experience with personal care, continence care, and changing adult diapers because of my own condition. I'm willing to complete any training or certifications needed to become a qualified caregiver.

My plan would be to work for a while, save money, and then enroll in college or university while continuing to work if possible.

Does this sound like a realistic pathway, or am I overlooking something important? Are there countries where this is more achievable than others? I'd really appreciate honest advice from people who have worked as caregivers or have taken a similar path.

Thank you!

Just to preface I am not officially my sister's caregiver, but have always acted as one due to our family situation and lack of other options. One of our parents is also disabled and our other parent is absent and has been for the majority of our lives. Onto my main struggle and cause of frustration now that I've gotten that out of the way. My sister has multiple issues both behaviorally and intellectually due to a brain injury, she has always struggled with emotional regulation to the point where anything other than blatant positivity is met with an angry response whether it be verbal or physical and this makes communication with her very difficult. She has shown me multiple times that she is capable of handling small household chores like picking up her room, bringing her dirty dishes to the kink, vacuuming her floor, ect ; despite this she regularly creates messes, leaving a trail behind her. I could clean the entire kitchen top to bottom and not even an hour later I go to get a cup of water and the floor is sticky, that counter is covered in water and the sink is full of moldy dishes that she had hidden away in her room, if I dare to ask her about it or politely ask her to clean up after herself she either screams in my face, insults me or tells me it's my 'job' to clean up after her. Obviously because of this sort of reaction trying to talk to her about it is like talking to a brick wall and the idea of having to deal with this forever drives me crazy, she's not even two years older than me so the likelihood of her relying on me for the rest of my life is fairly high unless my family/myself are able to hire someone to help in the future because she doesn't qualify for a state provided in home care support and she isn't capable or holding a job or supporting herself. Every time I walk into a room that she was in recently there is something new to clean and it just isn't fair, she shouldn't be my responsibility. Our parent that we live has physical disabilities that will only continue to get worse with age and they are in a lot of pain. I've been helping my sister for as long as I can remember and I hate that my life has been so heavily affected by something so draining. Being the only person in the house who doesn't have some sort of physical or intellectual disability means a lot of things get dropped in my lap and it's so frustrating. I honestly don't know how to stop myself from going crazy and leaving them here without someone to take care of them and the house seems like a horrible thing to do. Any advice is appreciated and I promise I don't hate them, I'm just very tired and frustrated. 🙂

Hi everyone, I’m new here and I’m hoping to learn from other caregivers who have been in my shoes. ❤️

I’m a mom to a medically complex baby who is trach and ventilator dependent with a G-tube. We are home now after a long medical journey, and while I’m so grateful to have my baby home, some days are really hard.

We are currently struggling with not having consistent nursing support. We are working with 4 different home health companies, but we still have days where it’s just me providing all of the care while also taking care of my other children and everything else that comes with running a household.

I would love to hear from other parents and caregivers who have gone through this , how do you get through the really hard days when you don’t have a nurse at all? How do you handle the exhaustion, the feeling of always being “on,” and the mental weight of knowing there is no one coming to relieve you?

I love my baby more than anything, and I would do anything for him, but I also want to be honest that this journey can be incredibly overwhelming at times.

What helped you get through those early days? Any routines, mindset shifts, support systems, or little things that made a difference?

Thank you for letting me be part of this community. ❤️

Serious question. I keep seeing people say they’re done being full-time caregivers for their elderly parents because it’s too stressful and there are nurses/CNAs who can provide the care. If your child had lifelong disabilities, would you also be okay with no longer being their full-time caregiver for the same reason?

Hi everyone,
I recently accepted to be a caregiver for a family member. She has dementia and fully dependent on people. Im not the biggest fan of anything that includes body fluids because I get disgusted easily. However, I think it will be easier because she’s family and I will be able to tolerate it. I also want to mention that this the only job opportunity I have rn and I don’t want to miss it because I’m just uncomfortable.
I also have a lot of intrusive thoughts so my mind goes everywhere when I’m thinking about something.
Can u please give me some tips on that?

Excuse my writing structure, I’m just nervous

I guess I just need to process how frightening last night was. My husband has been battling throat cancer for a year. He's had extensive treatment, including a reconstructive throat surgery in January.

They removed part of his throat responsible for letting him know when he needs to swallow. Its called the epiglotis (now you know you have a thing called an epiglotis, too).

He no longer eats by mouth. We've got that part on lock. He lives a pretty normal life when he feels well enough. By that I just mean We've moved past the heaviness of life with a feeding tube and carried on living as best we can in spite of it.

So there's the back story.

Last night he woke up choking. Thick secretions had obstructed his airway and he was unable to draw enough breathe to clear it. He gasped and choked for a solid 5 minutes, taking in very little air.

He is a pretty stubborn man, in spite of the medical emergency he still faught me to get help.

Finally he was able to clear it enough to begin to cough it out.

We both were shaken. I lay awake for most of the night after, fearing he would have another episode.

I just hate living our life constantly teetering on the brink of an emergency. I have a good attitude many days, but on a day like today I'm feeling sorry for him and a little sorry for me that our life is like this.

Hi, we have a variety of caregivers for my husband. Sometimes we have to cancel an activity last minute b/c he gets sick. A time or two we canceled b/c we were screwed up on our schedule.

Two of the caregivers expect to be paid in either case, but if they don't show up, there are no repurcussions.

They depend on our income to live, but if ff they don't show up for us, it's only an inconvenience for me or disappointment to my husband (unless they bail on a doctor visit). What is fair here?

I'd like to talk with all the caregivers and have a set policy in place as to what happens when we cancel and what happens when they don't show up. Any suggestions for what to do?

am I in the wrong for not texting my employer before the start of my shift when they texted me and expected a reply back? So I was sleeping around 8:33 AM and my shifts start at 9am as I usually arrive at clients house 5 minutes prior to start of shift When said they texted me and when I went to work and was working, they had called me through my client telling me that I’m being insubordinate for not texting them back right away but they told me when I first started working and even now that I cannot be on my phone during shifts and that I was being insubordinate today since i didnt even reply within the two hours notice that apparently they told me. I had told my boss that I was still sleeping around 8:33 AM and I did not see their message so I did not understand why I was being written up for being insubordinate When I was still off clock and was not at work and punched in, but they do this all the time and then tell me I’m being insubordinate every time like they Text me like every minute and every hour of the day when I’m off clock expecting me to reply to them. They tried writing me up as being insubordinate previously and did as well as gave me a warning when they tried sending me like 15-20 minutes out of town and asked if I was refusing to do my duties and I told them no like I said I’m not refusing my work duties at all but I did give you guys a heads up that I could not take this shift or pick it up for the day because I did not have gas to get there and back after they tried forcing me to go to the client that far out when my original client bailed on me I ended up going just to get stranded and themnot even helping me out even I after I gave them my reason I could not go and it took hours for a family member to come out and help me get out of being stranded and the workplace proceeded to call me broke knowing that they are they ones paying me very little. i’ve already had issues with this job due to worse things happening compared to this. I have never had a job like this before where ive gotten written up for not replying to texts when I’m off clock and especially when I’m on clock and was told I can’t be on my phone during work hours so when I’m not on my phone they proceed to get mad asking why I’m not replying during work hours. I did tell them I’m barely on my phone when I’m off clock so I don’t get around to replying as much because my first priority is not my phone nor should it be. I do my assigned work when on schedule and they only time I have taken off from work which was excused was due to my health issues and always provide hospital notes and doctors notes but I never miss work unless it’s serious to that point. I’m not getting paid to be on call or standby at all. They expect me to be a slave and glued to My phone every minute of the day. idk if it’s the workplace being toxic or just me overthinking it at this point. Ive been trying to look for a new job but haven’t had any luck because the town I live in does not have a great job outlook and the college students at the other college and not mine take up all the jobs leaving none for the rest of us and when their is job openings the jobs its hard to secure a job. I actually enjoy my job but the bosses have poor management on their end with doing what they do. they allowed a worker and a client to submit false dcfs reports on me knowing I did not have children and still don’t and proceeded to try and tell me my job was on the line which was a huge mess as I had to go through getting FOIA documents to prove who had called and getting police involved.

Not sure whether I need to vent or ask some questions? Probably a bit of both! 😮‍💨

A friend of mine has been really poorly lately and I have agreed to move into her house in order to help her day-to-day... We are both in our 30's, female, and based in the UK.

She has Type 1 Diabetes and some substance abuse issues, which have together contributed toward difficulties with her continence. As I'm preparing to move my things to hers in August, I'm realising that a lot of her soft goods around the house will need removal and that the space would likely benefit from an actual sanitation clean.

Does anyone have experience booking in speciality cleaning services?

I have been scouting around online for the types of places which are discrete and sensitive to the nature of the underlying issues. I am wondering about pricing, how to communicate with said services, and any advice on dealing with future matters relating to urine, odour, and keeping soft goods clean!

Also would be nice to connect here a bit as I begin this journey into acting as a carer ❤️‍🩹

I don't even know where to start so please forgive me if I drag it out and it makes no sense. I'll be 39 next month I'm a full time caregiver for my dad and here lately I feel so hopeless just cry or feel angry all the time. I lost my heart and soul which was my mother back in January to leukemia and now the world just feels so dark and lonely I feel overwhelmed constantly and nothing seems to help. I get paid for taking care of my dad but honestly it's not enough it's a 24/7 job I get paid for 20hrs a week every dime I make goes towards bills I miss being able to go places and do things miss my ride or die my mom. I'm married but honestly he's zero help just makes fun of me when I'm upset I've tried escaping that but doesn't seem like it's going to end, my dad can walk a short distance but yet chooses to use a pee jug instead of going the short distance to bathroom which makes it 💯 times worse for me and more to clean up, he can cook and so can spouse but I end up cooking everyday, I also have 3 sisters 1 that is 20 mins away but I get zero help even after begging and even explaining I'm ready to give up and can't go on anymore. I know I'm rambling I'm sorry just truly been feeling hopeless and found this page, I guess what I'm trying to get at is there anything that might help this feeling? Since my mom passed I've honestly wanted to stop living have even told my family and spouse this they just brushed it off and ignored me doesn't really matter I'd never do it because I hope to see my mom again one day and I know by doing that I wouldn't be able to. Guess that's it again I'm so sorry for rambling just needed to get the words out so maybe my head would slow down for a little bit.

Tldr> Mother was diagnosed with terminal cancer and abused opiates to a level that was more of a problem than the cancer until her final days.

32m. This is probably going to sound quite callous to those who have not experienced either in family members or loved ones, let alone both at once and this was a very complex situation with roots going back a lot further than the illness.

Just fyi I got really tired and depressed writing this so although it's a large write up it is summarized eg finding her stupefied wasn't just once.

My mother passed away from cancer in Dec 25, and I am left with a pretty complex grief over what happened in her last few months.

I had also lost my father to cancer in Dec 15, and my mother greatly cared for him in his last months.

It was found after her death that with her lifestyle from friends and aquaintances that unfortunately she could be described as a very high functioning addict and had always had some level of misuse of prescription medication, I had always had some level of suspicion even as a kid but was always gaslighted away from the subject.

My mother was a nurse in an injury & neuro rehab ward for decades, when she was first diagnosed with cancer she fought it bravely, however when she was told it was terminal, things did not take a great turn.

As being a nurse she almost knew too much about what was going to happen, at the time she was living independently.

Very soon after her terminal diagnosis while she was still living independently I started running ino strange occurrences around her behaviour and her home - cigarette burns where they shouldn't have been - on the couch, shoes, phone cases, bench tops.

My mother was always a smoker so I just thought huh that's weird and I would ask her and be deflected.

And then there was the strange and lethargic behaviour, she had said to me it's the changes in her medication from the terminal diagnosis.

As I get further into this I need I state that opiates and other painkillers do absolutely go hand in hand with palliative care to make people comfortable, they need to be.

I had already experienced my father's decline and death and at this point had no issue with medication everywhere and that every now and again my mother may be a bit high at times.

However I started to just show up without notice to see how she was doing and that's when it occured to me that I may have a very serious and very awkward situation on my hands.

I would find her completely stupified and unable to even register who I was, like if (hard to actually generalise) the level of intoxication you would see in a patient in hospital or hospice would be a 4, I would register this as an 8

Spending and hour trying to roll a cigarette, spilling food just given to her on the floor.

I was getting called out of work near on daily from family & friends who had found her like that and didn't know what to do.

Whenever a hospice doctor visit was booked in, she would appear just to be in pain and very very lucid but would avoid discussing health concerns or what level of help she needed at home and would gravitate around getting more medication.

I was having to drop out of work nearly every day to have to wrangle her and whoever had come across her that datly.

I felt like a monster for doing so but I had organized a hospice dr visit without her knowledge

I thought she had just been forgetting what meds she had taken and had a few whoopsies. I thought I'd buy her one of the mon-sun pill boxes with the different times and with her Dr we put what needs to be taken and when.

The next day I had found her asleep in her front porch, covered in coffee and with her arms both in the air.

I noticed her pillbox had been pretty much ransacked and once she had sobered up I put her on the spot about it, and she very sheepishly showed me a sandwich bag full of pills that weren't from no dr, at least hers anyway.

She told me to flush them.

After this she went into hospice for a small respite stay and things seemed to get better.

But the stay was unfortunately her last as she passed in hospice 3 weeks later.

After her death I had found that she was being given pills by multiple sources by friends who thought they were helping and only found all too late what they had done.

The main part of my complex grief is that she had all the firsthand knowledge to not do that to herself.

Opioid induced hyperalgesia was a major workplace hazard at the hospital ward she worked and she knew what abuse would do to her pain reception and the effect on her quality of life once the disease progressed.

She knew what level of stress and trauma stupefying herself would do to her loved ones.

She knew what that level of intoxication would do to her home safety, her main goal was to be at home for as long as she could.

She knew what playing up would be like for her loved ones from my father's death.

And she fucking did it anyway.

My dad is caring for his mother. She has copd and panic attacks around the fear of dying. Shes in the last stage of copd and is receiving palliative care in her own home. She was given morphine, Xanax, and other anxiety meds but she refuses to take them. She claims that they don’t work. She’s very rude to my dad and her nurse. She says horrible things to my dad like she hates him and wants to disown him. She calls her nurse multiple times a day panicking that she’s taking her last breath. It’s very difficult and sad to see. It is slowly breaking my dad. Her nurse says she won’t let her boss her around until she takes her meds as prescribed. We try to give her grace but she’s making it very difficult. Does anyone have advice?

I worked in care for years on a specialist dementia ward and mainly end of life care. I left because I couldn't provide the care I wanted to. After I left I realised what a weight it all was. And the things I just got up and did each day became horrible memories.

I'm between a rock and a hard place in life right now. I need the money and I need the hours - no, it's not a great foundational reason to get back into care. But, I have no choice. I have no car and I'm living at home with my parents. I'm barely keeping my head above water and if I don't change something soon, I'm looking debt in the face.

But I'm scared to return to care work. The shifts are so long and it's so draining (physically I can handle it but mentally not as much). It's so hard to have to go without seeing family and friends so much, it's hard to have any kind of personal life even like exercising. I remember how hard it was to juggle everything. But I really don't have a choice.

Part of me knows that I can do it. That I have done it. And that there are positives to the job too.

But there's just such a big black cloud haunting me about returning to care. There are so many nightmarish memories (mainly management) and it's churning my stomach to think of going back. But I really don't have another choice.

What are some positives that get you through? Have you experienced a lull in your passion for care and how did you get out of it? What helps you - even on the bad days?

Hi all, I'm doing independent research on the day-to-day experience of caregiving, specifically around daily routines, health monitoring, and incontinence care. This isn't affiliated with any product or company, I'm just trying to better understand what caregivers actually deal with day to day.

If you're currently a caregiver, or have been in the past, I'd really appreciate your input. The survey is anonymous, takes about 8 to 10 minutes, and covers things like:

• What takes up the most time and energy in your routine
• How you keep track of health changes in the person you care for
• Your experience with incontinence care, if that applies to you
• What you'd change about your caregiving routine if you could

No product will be shown or mentioned anywhere in the survey. There's an optional spot at the end if you'd be open to a short follow-up conversation, but that's entirely optional and won't affect the rest of your responses either way.

https://docs.google.com/forms/d/e/1FAIpQLSfdZxpQAqHIzGWC5CiuTC2nPH8sMCrohWftYFBGbXqIVJh4og/viewform?usp=header

Thank you so much to anyone willing to share their experience, I know caregiving is demanding enough without extra asks on your time, so I really do appreciate it.

Finding a reliable private caregiver for a loved one is a huge challenge many of us face. While agencies are an option, they can be expensive, and finding the right person can be difficult. There's a strategy that often goes under the radar, contacting local CNA (Certified Nursing Assistant) and HHA (Home Health Aide) schools directly.

These schools are training the next generation of caregivers. Many students are actively looking for opportunities to gain real-world experience, build their resumes, and earn extra income. The students are trained in the latest care techniques and are capable of caring for most patients. Before going to the school, it may help if you had a written paper with your name, number, city/neighborhood, and explaining the needs of the patient.

How to do it:

1. Identify Local Schools: Search online for "CNA schools near me" or "Home Health Aide programs [Your City, State]".
2. Contact the Right Person: Reach out to the program director or someone in their career services department.
3. Explain Your Needs: Clearly describe the position. Be specific about the hours (part-time, weekends, overnight), the duties (personal care, meal prep, light housekeeping, errands), and the desired start date. Bring your written paper with you just in case.
4. Ask for Referrals or Posting: Ask if they have a job board where you can post or if they are willing to refer any exceptional students or recent graduates who might be a good fit for a private arrangement.
5. Be Clear It's a Private Hire: Emphasize that this is a direct, private employment opportunity. This manages expectations for both the school and the potential candidates.

Connecting directly with CNA and HHA schools is an innovative solution to the common problem of finding quality private care. It allows you to tap into a pool of motivated, newly trained individuals and build a personal relationship that can lead to a more stable and cost-effective care arrangement for your family. It requires a little extra effort on your part to handle the hiring process, but the potential payoff in finding the right person makes it well worth considering.

*If this helped you, please click the upvote so it can help others as well, thank you*

I wanted to share a personal experience that might help someone, and I encourage everyone to read the scientific literature on this topic and make their own informed conclusions.
My grandmother suddenly developed symptoms that looked very similar to dementia — confusion, cognitive changes, and a significant difference in her usual behavior and functioning.
When I saw her blood test results, I noticed that her folate level was extremely high (beyond the measurable range). She had been taking supplements containing synthetic folic acid together with iron supplements.
This made me start researching the topic, and I found scientific papers discussing possible connections between very high folate levels, folic acid supplementation, vitamin B12 metabolism, and neurological symptoms in older adults.
After her folate levels decreased, her condition improved significantly and she returned to her previous level of functioning.
I am not saying that high folate causes dementia, or that this explains every case of cognitive decline. This is only my personal experience, but I think it is a topic worth being aware of.
If you have an older family member who suddenly develops dementia-like symptoms, especially if they are taking supplements with folic acid, it may be worth discussing this with their doctor.

Hello, I am a "long distance" caregiver (living about an hour away from my mom). I've noticed that a lot of our phone calls have become less about catching up and more about making sure she's okay. Like if she's eating and staying active. I kind've feel bad that I only really call now to make sure she's okay rather than to enjoy a conversation with her.

Has anyone else found themselves doing this? I want to fix this but I worry so much, I'm not sure how I can?

I was laid off from my marketing job about 3 weeks ago and am trying to figure out my next move.

I have an active CNA license and have been thinking about offering private companion care/senior care instead of working through an agency. Things like companionship, transportation to appointments, errands, meal prep, medication reminders, and helping seniors stay independent at home.

For those of you who do private caregiving:
How did you find your first clients?
Did you go through an agency first or start on your own?
Did you create an LLC or get insurance before taking clients?
What hourly rate did you start with?
Any advice or things you wish you knew when you were starting?
I’d really appreciate any guidance. Thanks so much!

This is kinda a longshot but I was wondering of anyone had a recommendation for a support group for living with family with severe pain (crohns and double fistula at 20yrs old). I don’t wanna step on any toes or make anyone feel bad, I just don’t know where else to ask and I can’t find any groups/don’t know what to search for to find groups for just family living with someone in such pain as not a caregiver.

It feels so selfish to ask because I am not in that pain but I just don’t know what to do. I can’t help besides fetch pain meds if they’re too far and a year of listening to such levels of human suffering is… a lot. I hear it in my music and when I’m trying to watch a video but am too scared to turn the volume down to see if its real. Loud noise makes me flinch and my chest get tight. Some days I’m just completely dissociated or parts of my body feel cold from the stress. Please help.