I (33F) type this from the kitchen floor of my childhood home where early this morning I had to call 911 and give CPR to my father.
Edit to clarify. I gave CPR on the living room floor. Just found the kitchen to be my grounding space this evening.
There is nothing that truly prepares you for this.
Currently in mem. care. Extremely depressed. Cries almost all the time. Says she wants family around. I visit 3-4x a week. She is almost 90. DH says the only thing that she will accept is my house. She is in a good facility and I can’t possibly replicate the care she gets even if I was willing to blow up my whole life. She can’t be alone but there she gets frequent check ins. I feel so bad for her. Was hoping she would adjust. Been 2 months. Maybe not long enough. Feeling guilty but don’t think my 60 yr old body can take this on never mind what will happen to my life. Almost every post I read says “don’t do it if you don’t have to.” It would be a tremendous gift. Not sure I am up to it. Still feel bad.
If have just separated from my wife of 25 years. She has multiple myeloma. A few years back, before a diagnosis, she started to loose her ability to walk un assisted. The all together. Then she lost her ability to sit up or even control her arms. Mental changes and cognitive changes abound. After months in the hospital and several different doctors and specialists, she finally had a diagnosis. The protein being produced by the cancer was blocking nerve conduction. It caused all of the issues. After 2 years on the cancer meds she was getting better. I know not many people can say that. Watching her get more and more capable was such a relief. I had been doing everything for her, while trying to take care of the house, and working a full time job that also involves travel. My daughter helped some when it was needed. Here we are years later and she has some mobility issues but can walk and is doing more and more. She never came all of the way back mentally though. She has just not been the same person. More toxic, more selfish, prone to fits of anger and sorrow. One of the bigger issues is her memory jumbles things to the point that she takes the inverse meaning of things. It has been taxing to say the least. She has fundamentally changed. I have fundamentally changed. I can't take this any longer. I asked to separate. She isn't my wife. She isn't the woman that I feel for. She is a stranger. Trying to hold all of the pieces together has made me forget myself. She wants to keep trying to work at it. It is just ground hog day all over again. We reach some agreement, things look better, I change for my part in the deal, and then she reverts. Rinse and repeat. She wants to do it again but the damage is done. Maybe is should work harder at it, but I don't have it anymore. She makes me feel bad. At all times. Either angry or crying. I don't want it to be this way. I have been feeling better about me ever since in all areas but 1, I gave up. But the damage is done.
I always visited my Grandmother at the nursing facility. Today I was there all day, and she passed less than 30minutes after I came back home. She had been suffering through end-stage COPD and diverticulitis the past 4 years.
In May she was in the ICU for almost a month and after she got the Trach and peg she was stabilized. The past two month saw her being sent back to the ICU and then back to the nursing facility once more.
It has been a very hard 4.5 years of taking care of her, and watching her decline first slowly and then rapidly was absolutely terrible. I felt so helpless and in fight or flight mode.
I’m still very much in shock since it just happened and would really appreciate some kind words/advice/encouragement. I’m glad shes no longer suffering, but now the future seems so daunting without her.
She was my best friend and last living grandparent. I just turned 30 last week and I feel… i don’t really know how to feel right now… thank you for reading 🙏🏾❤️
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. 😢
I've been thinking about getting a second pair of prescription glasses for my dad just to keep around as a backup. He relies on his glasses every day and if his main pair broke or got lost we'd be kind of screwed until we could get another pair made.
For those of you caring for an older parent who wears glasses full time, do you keep an extra pair around? I'm wondering if it's better to get a more affordable second pair with the same prescription or just wait until there's actually a reason to replace the main ones.
Okay so the trash in our bathroom is an automatic lid one but when it opens and there’s poopy wipes and pee soaked briefs it isn’t pleasant to stand next to while helping with toileting since it automatically opens when it senses my motion next to it.
What can I add to it to help with the smell? Sprinkle baking soda on it? A spray? A filter? Buy a specific diaper pail cuz maybe those help with smell better? Use different bags? Any and all tips welcomed. Thanks all! 💩
I quit a job I loved 18 months ago because my mom's doctor said she couldn't be alone anymore. My brother said he'd "help with money." He sent $200 once. That was eight months ago.
So now I'm 41, living on savings that are almost gone, and most days she doesn't know my name. She calls me "the nice lady." She asks when her real daughter is coming. I say "soon, Mom." Then I go cry in the garage.
The thing that gets me isn't the grief. It's the resentment. I gave up my career, my friends, my relationship (he left in March — said he "couldn't watch me drown"). And for what? To be a stranger in my own mother's house.
Everyone says "she can't help it." I know that. I know. But knowing it doesn't make it hurt less when she screams at me to get out of her house. It doesn't make it easier when I have to change her sheets at 2am and she hits me.
I don't want advice. I've read the books. I've called the hotlines. I know about respite care and Medicaid waivers. What I don't have is a single person in my life who will just say "that sounds unbearable" without immediately pivoting to "but have you tried..."
I'm not a hero. I'm not a saint. I'm a person who is slowly being erased and can't afford to stop.
If you're in this too — I see you. That's all I've got today.
Has anyone gone on vacation and used respite care? I desperately need a vacation and I feel more comfortable putting my father in respite care.
i’m 23 (m) and i’m caregiver of my boyfriend 24 (m).
i keep having break downs, no one takes them seriously
said i was going to check myself in the hospital because i need help
got told it would be a waste of time and that i should just go a therapist though my insurance
kinda not point
and still no help
the only solution was to take our dog for a couple days
i just want to matter
i mean fuck i’m taking care of your son/ grandson maybe you’d be nicer
and my mom told me this would happen
i’m trying to make things better, i have an appointment
i’m just so hurt
All ours did was recommend a program that we already know my Dad's not qualified for and give us the numbers for a few attorneys. She's useless.
Guys, I finally figured out what's draining my energy/motivation: seeing my wife not being able to be herself again. She has been paraplegic for 3 years now after spine surgery to remove a cancerous tumor attached to the spine. She used to do a lot for us, herself, our daughters, her mom who just past away, and pretty much everyone she knew or came across. In the beginning, I was all into it caring for her because it needed to be done, and no one else was going to do it. My oldest daughter started to help, too. Then I needed to return to work full time. I noticed my energy levels were higher while at work but once home, I felt drained and could not figure out why. I'm getting plenty of sleep, and get a break from caregiving while at work. Then I stopped wanting to do anything on the yard, washing the cars, keeping the bedroom clean, not taking showers regularly. Then this week it dawned on me: it's my wife's state making me feel this way. I don't resent her. I resent then situation she's in and myself for not having done anything about my career so we'd be financially better. I've realized that money doesn't buy happiness but it does buy comfort in times of need. I see myself as the main cause of her health because, had I been a bit more ambitious, she would've had better health insurance and care. I cannot talk to her about this, so here it is. Posted on reddit to share with a bunch of strangers I don't know from Adam. Strangers that I'm truly grateful for listening and reading this post. Now I'm crying. Sorry! I wear my feelings on ny sleeve.
Hi everyone! We’re a group of engineering students working on a senior design project related to the BD's PureWick system. We’re looking specifically at the wick-to-tubing connection and what you do with the wick when it needs to be temporarily disconnected, such as when getting up, moving around, or taking a short break from the system.
We’re hoping to hear from people who have personal experience using PureWick, either as a user or caregiver.
A few things we’re especially interested in:
We’re not trying to sell anything or collect personal medical information. We’re just trying to better understand the real-world experience so we can design around an actual problem.
Feel free to comment here or DM me if you’d rather share privately. Thank you!
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.
Hi All, new to this thread. Looking for some advice..
I have a dad who is diagnosed with FTD. It’s been 3.5 years since he moved to memory care home and his decline is very sharp (to me).
I have a sister who is living in another country and a mother who divorced my dad upon the diagnosis of FTD.
Recently since August, it has been non-stop problems/issues one after another that is draining both me and my bank account. I feel so alone in his care plan because I am the one doing every. single. thing. myself. From buying his supplies, seeing his doctors, managing his care wound, arranging for doctor visits and taking time off work. It is all me. Yes I do call my sister for emotional support but thats all it is.
My sister in another country gets to just live her life. I have a life too. I want to do my own things too in my own time. But I can’t. Sometimes I am emotional and I call her to talk it out but sometimes our conversation is consistently disrupted by my nieces. It just gets annoying. She will just say “sorry you have to do this alone”. Sorry currently doesn’t solve my resentment and anger. Sorry is not an action to me.
Say last night, dad has a medical emergency. I am the one who spent time trying to find for private ambulance (as he is bed ridden now) and getting him to the ED. Wait for the doctors and test results. Spending 5 hours of my life managing this emergency and my sister? Comfortably in bed sleeping. What the hell - so i am angry and resentful. I know she is in another country and I know there is nothing she can do but seriously why tf me?
I tried to lean to my mother when shit happens and her standard response is “just let me know if you need help”. When I do ask for help, I get thrown with another standard response “I don’t know what are the details, so just do it yourself”. What the hell.
Many more incidents and I don’t know how long more can i stand. Especially with the back to back incidents in these 3 months leaving me feeling like I have no room to breathe.
I hate to feel this way. I hate that I am angry and resentful. I hate this life and experience. How do you all do this gracefully? How do you let go of anger? How do you stop feeling like you are carrying a huge burden and there is no one but you? How do you stop feeling the “why tf me?”?
Help me please.
My name is Chris. I’m a 30-year-old U.S. Marine Corps veteran, husband, father of two young children, and caregiver for my family.
Four years ago, I lost my grandfather to cancer. He was the head of our household and the person our family could always depend on. He cared for my grandmother, who has serious ongoing health conditions, and helped raise my two younger siblings, whom my grandparents legally adopted.
Losing him changed our family in ways I don’t think any of us were prepared for.
After he passed, there was a role in our family that suddenly needed to be filled. My grandmother and younger siblings still needed someone they could rely on, and I knew I had to step up.
Since then, I’ve done my best to be there for them while also building and caring for a family of my own. I’m a husband and a dad to two small children, so most days are a balancing act between being there for my wife and kids and helping care for my grandmother and younger siblings.
Over the years, those responsibilities have only grown. My grandmother’s health requires a lot of care and attention, and her hospital visits have become more frequent. One of my younger siblings has also faced serious health struggles that have resulted in repeated hospital care.
Because my family needs me to be present and available, I’m only able to work part-time. It can be difficult trying to balance work, being a husband and father, and being someone my grandmother and siblings can depend on, but family has always been incredibly important to me.
There are days when it feels like I’m being pulled in every direction, but I remind myself why I’m doing it. These are the people I love, and when my grandfather passed, I made a commitment to myself that I would do everything I could to make sure the family he spent his life caring for would continue to have someone there for them.
The last four years have taught me a lot about responsibility, sacrifice, patience, and what it really means to show up for the people you love.
I don’t have everything figured out. I’m simply doing the best I can each day as a Marine veteran, husband, father, brother, and grandson while trying to carry forward the responsibility my grandfather once carried for our family.
This is just a small part of my story and the reason family means so much to me.
— Chris
Am I the problem? Ever since I was a teenager I’ve been “placed“ in a caregiver position. Im talking family and friends would stop by my house and just drop their kids off for whatever reasons; as I’ve gotten older I’ve still been in placed in this role such as caring for different people. Within the last 3 years I’ve had to be a primary caregiver to an aging family member at first it was just a here and there type thing because they could care for themselves then they had some medical issues that came up. So I then had to provide care for them for almost 10 hours daily during the week. There’s other family members that could help but “they can’t“ for what I think is bullshit excuses. I don’t get much if any money for this. So I asked about what I was supposed to do for any type of money multiple people have made comments about me getting a job of an evening but still being able to care for the relative(s) any time needed. I recently was made aware of a group chat with everyone but me in it to which everyone was like she doesn’t want to work. I don’t think it’s that much to ask for a little money since they don’t want to put this relative into an assisted living facility. So I guess am I problem?
My grandmother is in critical condition and she has been in and out of ICU for some weeks now.
We took her to a known, reputable, nearby, and a hospital we and everyone in the town have been going to like 20 years. It is a multi speciality hospital not just a general hospital.
There has been a renovation going on recently and some changes the hospital is trying to bring. But we never knew the extent of it.
The new doctors and staff have no experience or even a basic idea of what to diagnose or prescribe for a basic fever which happened to me last month.
\* They initially diagnosed my granny with dengue and after a day they said no we were wrong. She has lung infection. And then they said she will be fine within a day. Now they are saying she still needs to be in hospital for more diagnosis and treatment.
Of course I will be shifting her to a better hospital but I'm just frustrated . the next beat hospital is like 20 km away. I don't know how I will manage.
I lived with my Mom for the last 6,5 years since Dad died, and my whole life revolved around caring for her for the past 3 years. I have a very analytical mind (so did she) and can't stop going over notes, hers and mine, and researching what else could have been done. I lost her on 15 August. I'd be very grateful on any resources on how to live in a caregiver's 'after', on caregiver guilt and anything else. The silence is deafening and the emptiness is suffocating.
Hi everyone,
I’m looking for advice on clothing options for my father (76). He has early Parkinson’s, arthritis, and declining eyesight. My mom (73) is energetic and doing fine, but my dad has lost weight recently, and she's struggling with how saggy and unkempt his clothes look on him. I want to help him look sharp and put-together without compromising his comfort or independence.
Here are the specific challenges we are dealing with:
Fine Motor / Buttons: Buttons and traditional fasteners are too hard for his fingers due to arthritis and tremor.
Pants Sagging & Weight Loss: He has lost his seat/glutes, so standard pants immediately sag down.
Back Brace & Blood Pooling: He wears an abdominal compression/back brace to help prevent blood pooling and keep his blood pressure up (orthostatic hypotension), which adds bulk around his waistline and makes fitting pants tricky.
Suspenders: We tried suspenders, but they are too frustrating for him to unclip and handle independently when he needs to use the bathroom.
Magnetic Pants: We tried magnetic button pants, but the heavy magnetic closures pull the waistband down and cause even more sagging (though magnetic shirts and jackets have worked wonderfully for him!).
Frequent Bathroom Access: He drinks a lot of water to manage his health, so quick and easy access for urination is essential.
Does anyone have recommendations for specific brands, adaptive pant designs, or practical modifications that have worked for your loved ones in similar situations?
Thank you so much in advance for any tips or product suggestions!