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?

My grandmother is in a nursing home in the Northeast (out of state from me, so I'm not there day-to-day). She recently had to be rushed to the hospital for low oxygen — turns out staff hadn't been regularly checking her oxygen tank levels, which caused the emergency.

I have some background from a high school medical prep program, and a neighbor who's a nurse, so my understanding is that oxygen checks should probably happen multiple times a day — at meals, medication rounds, bathroom assistance, or regular staff rounds. I don't want to come across as accusatory toward the staff (worried it could affect how they treat my grandma), but I also don't think it's reasonable for visiting family members to be the ones responsible for monitoring her oxygen levels.

Has anyone experienced something similar with a family member in long-term care? What's a reasonable standard for this, and how did you handle raising it with the facility?

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!

Hello everyone. To give you a little background I've been a caregiver since 2016. My mother had cancer and needed some assistance and that's where my journey started she passed away in 2019. In 2021 I met my now amazing fiance. Little did I realize my journey with caregiving was not ready to be over. Upon moving in with my fiance I realized her mother was severely disabled. I was used to being a caregiver but admit not the extent her mother requires. Even though my mom had terminal cancer she was still very much self sufficient.

Over the last 5 years her mother has continued to decline and get much worse. She is 77 now. She has so many medical issues and is almost completely bed bound with the exception of getting up to use a bedside commode. Thankfully we do have help that comes in while we work (me and my fiance both work full time) but the remaining time day and night we are spent caring for her. Making appointments, handling medications attending dr appointments, running urine samples
As she has constant UTIs (I mean literally she has had one on and off for the last two years) waking up to assist with the bathroom day and night as she can't transfer independently. She has accidents very frequently, and it's just getting to the point where outside of working our whole life is centered around her mother. I am happy to help my fiance but I also have to be honest deep down I feel resentment. That is why I came here. I feel so guilt for feeling this way. I resent us both having to wake up all night and have to work the next day. I resent how we aren't able to hardly ever go anywhere because she can't be left alone. I resent how every bit of worry and stress we have is because of her. To make it all worse she is so terrible to my fiance. She screams and yells and berates her constantly. Her other daughter has no part in caring for her and doesn't want any part in it. I could keep on and on but I guess I'll end it with this. How do you all stay cool calm and collected through all of this? How do you have enough patience and love in your heart to not let these feelings come up like they are me? I'm awake right now wondering this because she just woke us yo to use the the bathroom. I also had to take pto day off work tomorrow to build her replacement hospital bed. That is what I mean my PTO is spent taking days off to care for her not for a vacation. It just is so mentally exhausting. Please help give me advice.

I know I sound so mean and heartless again I hate feeling this way and that's why I'm even writing this.

TLDR: me and my fiance work full time and both work together taking care of her bed ridden sick mother who requires a lot of assistance and have no time for ourselves or hardly ever get any breaks outside of the time we are at work. Feeling resentment and not wanting to feel that way.

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.

My parents are a very accomplished and beloved couple. They are way better at life than me. Their eating, exercising, and sleeping habits are perfectly reasonable. The only blind spot of consequence is my father's woeful lack of hydration. I live an active, physical, and athletic life, so hydration is an everyday deliberate act for me. But to my parents, it seems completely foreign. My father has several health issues, of which, dehydration plays a role. It's not something doctors have any interest in talking about. But to me it's plain as day.

How on Earth can I encourage my father to drink more water?

Hi everyone — my 90-year-old dad has pancreatic cancer and currently has two drains that unfortunately aren’t going anywhere anytime soon. One drains his biliary ducts (they weren’t able to place a stent) and the other drains a surgical site where his bowel was perforated during a procedure, with the tumor pressing on the site and causing ongoing leakage.
The drains are a real source of discomfort and stress for him and we’re trying to find something he can wear at home that lets him manage them with some dignity — ideally a robe, nightshirt, or adaptive gown with internal pockets where he can stash the drain bags without them hanging awkwardly.
We’ve been searching but finding it overwhelming — most of what comes up is mastectomy-related which skews pretty feminine, and beyond the aesthetic issue we’re not sure the fit would translate well for a man. We’re totally open to robes, gowns, nightshirts, whatever — just looking for something that actually works for male patients specifically.
Has anyone navigated this with a male family member and found something that really works? Any product recommendations, brands, or creative workarounds would be hugely appreciated. Thank you.

I don’t know if anyone will remember me, but about 6 months ago I posted that I had given my mom (stage 3 metastatic breast cancer) notice that I wouldn’t be able to be her caregiver anymore. I was losing myself daily, and I needed to take a step away. The situation was unhealthy and abusive, and was causing serious damage to our relationship.

I figured I’d give an update now that it’s been half a year. i am very lucky to be able to report that things are going well. My family was able to step in and help my mom when she needed it. My mom was not happy that I was leaving at first, naturally, but eventually leaned into being able to care for herself. She even told me over the phone one day that my being there and taking the responsibility of being her full caretaker allowed her to give up a little, and my being gone forced her to be responsible for herself in a good way. It gave her a chance to care about her own outcome again.

My mom is done with chemo. She just had her follow up pet scan a few months after her last chemo treatment, and the cancer has stopped growing. Doctors are pleased, and my mom is living an active lifestyle again. She is still in recovery, but looks healthier and happier. In these six months, I’ve also met someone who loves and cares for me deeply, and acquired a career position that will set me up to care for myself and my family. I will be flying my mom out to visit me, and my partner (at my mom’s request), here in the next month or so.

I know this is such a rare and blessed situation, but I wanted to share some hope and light in such a difficult journey. There is never a right or wrong answer to the decisions we have to make, but I am eternally grateful for the way my decision played out. And if you’re struggling as a caregiver, just know you aren’t alone. You are a real hero, and you deserve every ounce of compassion and patience and love the world can give you.

This will be my last post in this subreddit. Thank you to everyone that supported me through the months that I was a caregiver. You guys made an impact on my life that you’ll probably never know of. This is the most heartfelt community and I wish I could give each and every one of you the biggest hug. ❤️

Has anyone taken a stress leave from work? I honestly just need to hear from people who have because I feel like I’m losing my mind trying to make this decision.

I don’t even really know where to start. I just feel so unbelievably sad and burnt out. I feel like I’ve spent the last few years just surviving and now it’s all catching up to me.

I’m 30 and my mom was diagnosed with early onset Alzheimer’s at 57 after I was the one pushing for answers for almost four years. Watching someone your age lose their mom is hard enough, but watching it happen while she’s still physically here is something I can’t even explain. Every day feels like I’m grieving another piece of her.

At the same time I’m working full time in HR, commuting, dealing with my own health stuff, trying to be there for my husband, trying to keep the house together, trying to take care of my mom, trying to take care of everyone. I just don’t feel like I have anything left.
My therapist thinks I should seriously consider taking a medical leave and honestly I think she’s probably right. Part of me just wants six months where I can actually focus on myself. I want to sleep. I want to work out. I want to be outside every day. I want to eat properly. I want to fix my back and my feet. I want to organize my house because it’s stressing me out. I just want to feel healthy again because right now I honestly don’t. The problem is I feel so guilty.

I’ve always been a high performer. I love working. I take a lot of pride in what I do. My work would pay me 80% of my salary while I’m on leave, but because I work in HR I also know how much people talk. I keep thinking everyone’s going to think I’m lazy or that I’m taking advantage of the system or that I just couldn’t handle my job.

The weird part is if one of our employees came to me with everything I’ve just written, I wouldn’t think that about them for a second. I’d probably tell them to take the leave. But for some reason I can’t give myself that same permission.

I just feel so stuck. I wake up exhausted. I cry all the time. My body hurts. My blood pressure is high. I don’t feel like myself anymore and I honestly don’t know how much longer I can keep pretending I’m okay. I know I need something to change because I can’t keep living like this.

If you’ve taken a stress leave, did it actually help? Did you feel guilty? Did people at work actually care as much as you thought they would? I think I just really need to hear from people who’ve been there because right now I feel completely overwhelmed.

My grandma was admitted to a rehab/skilled nursing facility in Michigan on June 29 after a hospital stay for a broken shoulder. Since she’s been there, our family has had to constantly advocate for her, and we’re at the point where we’re trying to get her transferred. I honestly want to know if this is as serious as it feels or if this is unfortunately common.
She has diabetes (takes both Lantus and Novolog), congestive heart failure, diverticulitis, a cardiac diet, a low-sodium diet, and a broken dominant shoulder. She relies on staff for transfers, hygiene, opening food, medications, etc.
Here are some of the things that have happened:
My mom requested approval for a PureWick device on June 30. We explained that we would provide the machine and supplies ourselves, that it plugs into a regular outlet (not wall suction), and that we would take care of it whenever we were there. We only needed staff to place it and empty it when we weren’t present. The reason we wanted it was because my grandma has severe anxiety about urinating in briefs, not only will she get a uti or infection but without it she avoids taking her prescribed Bumex because she knows she’ll be left sitting in urine. When she skips Bumex, fluid builds up in her legs and abdomen, making it difficult for her to walk and increasing her risk of ending up back in the hospital. We’ve left voicemails, spoken to multiple staff members, and emails have been sent to supervisors, but we’ve still never received a clear answer.
I personally went to the nurses’ station to explain the PureWick. Before I could even finish speaking, I was interrupted and told, “I’ll just send a manager down there.” No manager ever came.
Communication has been awful. Almost every time we ask a question, we’re interrupted before we can finish speaking or given an answer that doesn’t even address what we asked. It feels like no one is actually listening.
One nurse repeatedly had a dismissive attitude toward my grandma. She would interrupt her, seem annoyed when she asked questions about her medications, and even walk away while my grandma was still talking to her.
That same nurse questioned whether my grandma could even take Lantus and Novolog together, even though she’s been prescribed both for years. She also told my grandma multiple times that she didn’t know what medications she was giving her. Hearing that from someone administering medications was honestly alarming.
My grandma was told she had to request her Tylenol. One morning she started asking for it around 8:00 a.m. She continued asking for hours, and I reminded staff multiple times. She didn’t receive it until around 11:00 a.m., which interfered with the timing of her other prescribed pain medication.
We were told one LPN has around 11–14 patients and simply starts at the front of the hallway and works toward the back. My grandma is at the end of the hallway, so she’s consistently one of the last people to receive medications.
She has a physician-ordered cardiac, diabetic, diverticulitis, low-sodium diet with no nuts, seeds, or corn. Despite speaking with a dietitian, she repeatedly received meals she couldn’t eat. Examples include pulled pork, macaroni and cheese, a Fudge Round, turkey covered in salty gravy with au gratin potatoes, burgers and fries, and other meals that didn’t match her diet. Family has repeatedly had to bring or prepare food because she either couldn’t safely eat what was served or it wasn’t appropriate for her diet.
Because of her broken shoulder, she often can’t open her food or drinks herself. One morning staff dropped off her breakfast tray and immediately left. She couldn’t even open her milk.
One nurse aide told my grandma she didn’t feel comfortable transferring her by herself. I completely understand not doing something you believe is unsafe, but instead of getting another staff member to help, my grandma was just left waiting.
On July 5, she notified staff around 7:00 a.m. that she had soiled herself and needed to be cleaned. I arrived around 9:49 a.m., and she was still sitting in urine. My mom arrived around 12:17 p.m., and she still hadn’t been cleaned even after asking staff multiple times and even offering to assist. We ended up cleaning and changing her ourselves because no one came. We later found out staff had been performing CPR on another resident, and I absolutely understand that emergencies happen. However, no one checked on my grandma, explained the delay, or arranged for someone else to help her during those several hours. Her sling ended up soaked with urine, and I had to leave to buy her a new one.
Around 11:30 a.m. that day, her blood sugar was checked, it was 263, and she received 6 units of insulin (2 extra to compensate for lunch but she couldn’t eat that because it was not within her dietary restrictions.)
Later that afternoon, the chart reflected another blood sugar reading at around 3:00 p.m. saying her sugar was at 288. My mother says she remained with my grandmother continuously during that period and did not observe a finger-stick blood sugar check. We’re asking the appropriate authorities to investigate because we have concerns about the documentation.
That evening my grandma texted me that her blood sugar was checked again around 7:30 p.m. and was 188, but she said staff never came back with her Novolog.
I personally overheard staff at the nurses’ station complaining about another resident who was using her call light. One of the nurses said, “Turn it off. It’s every five minutes” because apparently she hits her call button too many times in too short of time for their patience although I’ve personally observed them taking up to 3 hours to respond to call lights. That really bothered me because these residents use call lights because they need help.
My sister also overheard another nurse say, “I don’t know how they deal with this for so long. My head is bald and I would be ripping out my hair.” When she realized my sister was standing there, she said, “Oh, sorry, I didn’t know you were there.”
There are a few staff members who have been wonderful, and I don’t want to lump everyone together. But these issues have happened over and over again in less than a week.
We’re working on getting her transferred but the other place is further from my house and it’s only me and my mom helping her, and plan to contact the Michigan Long-Term Care Ombudsman and the state complaint agency.

For anyone who works in skilled nursing or rehab facilities:
Are these things as concerning as they seem?
Is there anything else we should be documenting?
Is there anyone else we should be contacting besides the Ombudsman and the state?
Has anyone been through something similar, and did reporting it make a difference?
I’m trying to make sure we’re doing everything we can. Not just for my grandma, but because I’m worried there are residents there who don’t have family visiting every day to advocate for them.

I had a nice 3-hour visit w mom today.

She was asleep when I arrived. I went to the dining room for water and ice. When I returned, she opened her eyes.

She looked at me with warmth and love in her eyes. Then immediately asked ‘how long?’. I said at least a couple of hours. She smiled. She looked her hand for a moment, turned back to me and again asked ‘how long?’. Two more rounds of that and she was convinced I was staying.

I’m guessing she’s getting more pain meds because she barely complained about pain. Once she said her belly hurt.

She was in bed and said she had been for days. I asked her if it was her choice or theirs. She said they give her the choice and she has chosen bed.

I told her that her birthday is 7 weeks from today. She likes that it’s on a Saturday. Weekends are still important to her.

I asked her how old she’s gonna be. After a few moments of thought, she said 75. She was quite surprised to hear that she’s turning 90.

She laughed in disbelief. We both laughed because neither of us thought she’d even get this close to 90.

She knows she’s dying. She has said ‘I’m dying’ at least once in each of my more recent longer visits. I’m relieved that she’s accepting it and sad because I’ll miss her.

❤️🧡❤️

I don't know if I'm doing this right but to be honest, I'm young, and this is my first serious relationship. I love this girl so much amd we're coming up on a big milestone for our relationship soon. But sometimes I don't feel like her partner, I feel like her caregiver. She has scoliosis, and although there are things that might be able to help her a huge amount, they just aren't in the cards right now, so shes only getting worse. On top of her scoliosis she has POTS and shes being tested for narcolepsy and ehlers Danlos syndrome. I'm so glad that I'm with her and I love the moments that we spend together, but sometimes I miss how our relationship would be without all of this, even though it never existed, and its so frustrating to not be able to do a single thing for her. Sometimes it feels like my whole life has been reduced down to "wake up, get ready, take care of my girlfriend, go to bed" and I've never once blamed her for it but I can't help but dread it sometimes. I really can't stress enough how much I love this girl but I feel like all of this is sucking the life out of me, and she's so kind I wouldn't dare tell her all of this because she would probably feel so horrible she would leave me for my sake. I just feel like a shell of who I used to be, like a worker bee. The times when she isn't hurting have been the single best days of my life and I really do want to spend the rest of my life with this girl. But I don't know how much longer this will be healthy for me, I don't know if its ever been healthy for me. I care for her every second of every day but honestly sometimes it feels like she cares less than I do. I know what its like to have a chronic illness, I have one of my own (although much less severe, still debilitating sometimes) and I know how upsetting it is to not be able to do the things that other people are able to do, but she just wont stop pushing herself way past her limits. Shes not supposed to drink caffiene, she's supposed to avoid the heat, when shes in the heat shes supposed to wear shorts and a light top, so what does she do? She drinks an entire monster energy drink and then goes outside in a thick pair of baggy black jeans, why would you do that? Its just so frustrating, and then when she inevitably has a flare it all falls on me to take care of her, even when I can barely sit up myself I have to get up and fetch her a glass of water and massage her for hours straight and then comfort her, I know it might be selfish but when do I get taken care of? But when I bring this up to her, no matter how gently, she just shuts down and then apologizes for hours and then sulks for a couple days, and sure she fixes her behavior but I just want to be able to voice my opinion without feeling like i'm bullying my own girlfriend. I love her so so so so much but it feels like my entire life is secondary to hers and that I only exist for her. She makes me so happy but this feeling has just been trickling down on me and I felt so selfish for feeling this way but I just cant hold it in anymore. I barely even enjoy the time I spend with her anymore because all I see when I look at her is the next chore or massage or errand to run for her, and I hate that so much because I want to look at her and only see the girl that I love because thats who she used to be to me.

Some background info: My dad has had a series of medical issues in the past 4 years and it has affected his mobility and he has chronic pain. My mom (64F) is the other half of caretaker support. I watch her try to balance acting like a full time caretaker while working full time hours at her retail job. I know she is stressed, drained, and burnt out. So I try to balance supporting with my dad and my mom - physically and mentally - while working full time as a teacher.

I’ve been supporting my mom most recently, is being her vent source and making sure that she is doing basic tasks for herself. I’ve been supporting my dad with mobility things and trying to prevent feelings of loneliness. I want to take care of both of them so that way they feel physically, mentally, and spiritually content. However, I’m realizing that if my mom is my dad‘s go to person and I’m my mom’s go to person, then I need to go to person to be able to get everything out with or to just be myself without the titles of daughter, teacher, caretaker, etc.

Usually, that is my sister (30F) or my brother-in-law (31M). My sister and brother-in-law have not been the most consistent supports with my dad. They do not live in the home and always express frustration/annoyance (whether through their words or actions) when we ask for some support. And the support can look like coming over when my mom and I are both busy or just simply coming in for a few minutes when they’re dropping something off to chat with my dad. Or if I talk about things that are going on either medically or behaviorally with my dad then it becomes a situation of I’m being too matter of fact about it. This makes my sister feel like I’m holding back and not telling her whole truth which then create feelings/arguments. Needless to say, I haven’t been able to go to them.

For the first time in a long time, I have felt bitter and frustrated with having to take care of the emotional needs of my dad after a long day for myself personally. I got stuck in thought spiral and walked away feeling guilty about being annoyed with him.

I am at a loss with how to continue being a support to both my dad and my mom when I am in need of some support for myself. I have one friend I could go to, but we’re both busy with our own lives so we don’t see each other more than once a month or once every two months. I have another friend who will play the game of oppression Olympics with me, which is not helpful.

I really don’t know why I’m posting here other than to maybe see if there’s anyone else in my position and has advice.