r/CaregiverSupport

This is literally my first reddit post and Im honestly fearful about people thinking Im a terrible daughter for asking this, but Im not sure where else to go for info.

My 90 year old mother has been on hospice care for 2+ months now. She is in stage 5 kidney failure (GFR 11) but is also blind, deaf and crippled enough that she can barely stand. She has been ill almost my entire life and has broken more bones than anyone I know, plus has had both hips and knees replaced. Basically her body is a total lemon and always has been. She has been on oxy (5 MG 4x/day) for the past 20 years. At 4ft10 and 85 lbs, I honestly dont understand how THAT hasn't killed her.

2 weeks ago, her hospice nurse felt she was ready to go to the hospice facility-- she was now too weak to stand, breathing was becoming labored, was only eating and drinking small amounts and was sleeping 16+ hours a day. We truly thought she was passing, and everyone, including her, was relieved. Dad passed almost 3 years ago and she has missed him terribly. She has zero quality of life.

After 2 days in hospice care, they told us she wasnt dying "fast enough" and would need to be moved to a nursing home-- the very thing we had hoped to avoid. We tried to find the best one-- not many choices in our city-- and admitted her, thinking it would be a very brief stay. Instead, its as if she has come back from the dead. She is FURIOUS that she is still alive and even more so that she's in a nursing facility. She isnt tired, eats and drinks ALL the time-- large portions!-- and is now telling us that she thinks she can walk again if we'd bring her walker to her.

This is the part I dont want to be judged for-- i love my mom fiercely, she has always been my best friend--but I literally cant understand what is happening. If I thought that stage 5 kidney failure could reverse itself and she could get better, that would be great, but obviously that isnt happening. The idea of her hanging on like this for months (years??) and being so angry about it almost makes me want to drive off a cliff.

I guess what Im asking is: has anyone else seen this anomaly? Where someone in this condition is close to death and then rallies like this? I know it can happen for a day or two but its been a week now. I feel like the world's worst daughter for being disappointed that she isnt declining, but she truly doesnt want to keep going-- she thinks God must be mad at her and doesnt want her 😔 I just dont understand why this is happening. Any thoughts or experiences? TIA.

I been working with this family for about 4 weeks now 3 times a week i don't really do mornings like that so today i was a little all over the place i forgot to take my shoes off, yes it happens but she didn't say anything but i seen her face and later remembered oh thats right the shoes, second i needed help getting him in the chair since i never really got taught how to place him in the chair alone then she walked out without saying anything like she just was upset about everything i do. I asked her where is the coffee so i can make his coffee in the morning she was like that needs to be done as soon as you get in before he wakes up, how am i suppose to make the coffee if you never showed me where it was in the first place like this family just be giving me the ick. One they already weird as it is and two the communication be all off this is probably the worst family i worked with through this company i don't complain because i like my patient even if he be perverted sometimes but he just a man and in pain but she makes me not want to come back. And third she didn't tell me he was going to his son house today like isn't that something your supposed to tell your caregiver because the son came early to pick him up and that leaves me cutting my hours short because you guys are going somewhere and didn't even tell me or the nurse about it so they could adjust my hours. . . She was just nick picking all day and it was only 4 hours.

There seems to be no true solutions for us younger married caregivers to have lives beyond what is.

Again...I am 49F, taking care of my 52M husband with cognitive impairment and post impairment syndrome/CP.

I see my life fading away before my eyes and knowing there is no way I have to change any of it.

There's no possibility of divorce, it would devastate my husband and his family. And id rather not do that either, but I also hate being stuck in this just because I am married. People have noticed that I am not the same happy person I used to be. Minus the family...they dont seem to care how I am doing, which I have talked about before.

There is another alternate life I could have with someone else, but no way of attaining it. I would love to have a true marriage again, to just be myself and a wife, instead of a caregiver...to be able to go and do things id like to do instead of work and stress and being in charge all the time.

But I dont see any ways of it happening....my husband is not morbidly ill. We are both still fairly young.

Im just tired of everything mundanely the same.

When I think of never having hope of a different life, I feel like all the life is just seeping out of me. I cant NOT have hope, but the reality of said hope, is as slender as a spiderweb thread.

There is nothing the same anymore in my life. I feel like im always on edge unless I have a day off, which is not often.

I don't want my life to be this way forever

I care for my dad who is 80 and on hospice with Congestive Heart Failure and AFib. He’s been remarkably resilient since he started hospice. He’s on his eighth month, and overall he’s pretty stable—edema is under control, good BP and O2 levels. However, for a number of reasons, he’s unable to walk on his own anymore, and over time he’s getting more frail.

Seeing how bad he was when he started hospice, I am amazed he’s made it this long, but I also recognize that what he’s going through isn’t reversible. You can slow the course, they may even take him off hospice at some point, but his particular combination of problems will eventually catch up with him.

I have a lot of anxiety around what the end of his life looks like—whether it will be a sudden event or something more gradual. If you have ever cared for someone who passed away from CHF, what signs would you point to that signaled they were approaching the end of their life? How long did they live beyond that point? Sorry for heavy topic, but definitely appreciate you sharing your experience.

What the title says.
We’ve been trying for 2 years, have had 3 early miscarriages in that time, and a full work up through a fertility clinic. They basically said try again for 6 months, then highly recommended IVF after that due to my low AMH, and then my parent was put on hospice a few weeks after.

Initially we were told a few weeks for my parent’s prognosis, but it’s been 10 months. We put things on a pause this whole time but have now been told my parent’s passing could take months or years, so we decided to let go of the death grip on the metaphorical steering wheel, and here we are.

We wouldn’t necessarily be “celebrating” the positive test in the normal sense- recurrent loss robs you of most of the excitement, but leaving my husband at the airport this morning was more excruciating than any of the drop offs these past few months.

I don’t even want to tell my parents, because they’ve proven that a) they can’t keep a secret and will tell their friends, and b) don’t understand the realities of recurrent loss. I’d be managing their emotions while there more than managing my own.

So here I am, heading into 2 weeks of caregiving verrrry early in pregnancy. I’m so tired of the back and forth. I just can’t believe we’re still in this.

I (40f) have been caring for my mother (68) for most of my adult life. In the last 15 years, she’s had a myriad of major medical issues. She recently got a new cancer diagnosis - her third bout of lung cancer. The first two times, she did great. Treatment was ridiculously smooth, she didn’t have any side effects from the chemo, radiation, immunotherapy.

This time though, that isn’t going to happen. Realistically, it’s just going to get worse and the decline seems to be happening quickly. This coming week is a flurry of appointments for an MRI of her brain, PET scan, CT scan and a thoracentesis procedure for getting fluid off her lung. I feel once we get all of those results, we will get a timeline of what time she may have left.

She is physically weak. She has fallen a handful of times recently. Her cognition seems off. Her memory is slipping. She sleeps more than she is awake. She eats, but she’s slowly losing weight. Her emotions are all over the place. We argue a lot.

It’s just the two of us. My brother lives 6 hours away. No other family, not really any friends, no other support. I am preemptively exhausted and overwhelmingly saddened by the reality of this new baseline of “normal”. I dread a treatment regimen, selfishly because of how much more work it will mean for me. I’m not sure if she even wants to do treatment, and if I’m being honest, I don’t know if I want her to either.

Sorry for the rambling. I just needed to get it out because I don’t have any other outlet.

We have an autistic son (27M). Son and I together cook for holidays and hang out. Husband disengages and just goes to his room while we do all the work cooking and organizing. I love spending the day with my son and he’s fun, but why can’t my husband engage and participate with us? This happens most days and every holiday.

We cooked all morning for a nice July 4th. While food was in the smoker, son and I sat down and had a cocktail and played cards. We talk about deep stuff. I want him to feel good about holidays, but feel like I carry the emotional load. I texted my husband and asked him to come in and join us. Asked him this morning while I was making coffee why he didn’t come and join us - he says he didn’t get the text. I’m going to continue to press this issue.

Anybody else?

I know, I know, this is a really hot take...

I know people can become ill, disabled, or need caregiving at any age, and I don't overlook that. This isn't about believing older parents are the only ones who need care.

I know what it's like to lose a parent. My mom passed from colon cancer when I was 5, so I don't take having a parent for granted. If anything, I feel incredibly lucky that my dad is still here. I'm so so grateful. I tell myself I need to spend every living moment with him because I know I'll regret it. Even writing this, I feel so guilty and horrible. I'm 24 now and have been caring for my dad for as long as I know

I guess it's a combination of being his main caregiver and him not making the best decisions in life (in other ways) that makes me build this resentment, but I hate it. I can't avoid these feelings when I'm living in them.

But has anyone else found themselves quietly resenting that their parents had them so late in life? I'm struggling with becoming a caregiver much earlier than I thought, and sometimes I start feeling resentful that I never really got the chance to build my own life first.

But I know this is life, everything's written, and yeah, sooner or later things may or may not get better. I'll never know, but I have to stay positive. I hate this feeling, and I can't shake it out of me..I hate speaking this way about my dad because I love him and he's just an old grouchy man.

I hate having to be the one to lift his mood. He's usually stubborn, angry and impatient. I was so excited for my 3 day weekend. I've never NOT worked on a Fri and Sat. It's been nothing but chaos at home having to tend to him every hour or two. I'm just tired...

Didn't make his routine popcorn for his match on time and he called me saying "i'm 75 blah blah you need to check on me every 30 minutes... I called your name...don't be lazy and selfish..." like those words break me inside. I wish he knew. Like my whole existence is to tend to him and make him happy, and he just notices the one time I slacked. SORRY FOR TAKING AN EVERYTHING SHOWER AND RELAXING IN THE AC

Tried to finally go to the gym last night and couldn't stop crying on the drive. I stopped on the side of the highway just having a crying sesh and a state trooper stopped and thought I was having thoughts of kachowing myself and it was a whole thing omg

I don't think a weekend or day away from home and responsibilites can fix this feeling, it's just a little glimpse of..peace?

Sorry, I don't really have anyone to talk to about this and I just come on reddit to vent it out to people who understand. Thanks for reading if you made it this far

Any parent caregivers ever dealt with these feelings as well? How do I work through the resentment and guilt? I hate even asking this

My mom has been in very very poor health. I do not think she is going to pass soon, but she's not going to get better. My father has been caring for her for the past several years. How do I best support him and her right now? He and my mom both try to "shield" me from what is going on (my mom in particular gets very distressed whenever she sees that I am upset/sad at her health situation).

Some context that makes it harder:

• I have no siblings, so it's just me
• I live a different city from my parents
• My dad does not have close friends and isn't the type to easily ask for help

I'm trying to figure out how to support my dad through this and help him not be blindsided or alone when the time comes. I want to help him build some kind of support system before things get worse, and figure out how to stay connected in a meaningful way from a distance. I figure this is an okay subreddit to ask for advice on this. How do I bring this up with him without it feeling like I'm rushing toward the worst-case scenario? What helped you in the months before/after losing a spouse?

I’m 24 and a full time caregiver for my mum after she had a stroke almost 2 years ago. I never got the choice to be her caregiver it kind of just fell onto me and became my responsibility.
Lately I’ve found myself getting so frustrated with her, with the situation and with my life.
I know it’s not her fault and that it’s because of the stroke but I get so irritated at how she acts and talks sometimes and I feel so guilty for feeling like that. She asks silly questions and I have to repeat myself all the time. It’s like every time I’m already feeling irritable is when she does these things.
I hate being a caregiver and I don’t want to do it but there’s not many other suitable options and I can’t bring myself to leave and arrange other things because it would upset her so much and I couldn’t deal with that guilt.
She used to be my best friend, I used to talk to her about anything and everything, we used to laugh together, we used to do everything together. Now I don’t even want to spend time with her and I don’t enjoy talking to her anymore which makes me feel so horrible and guilty.
I’m grateful that I still have her here and I can talk to her but at the same time I’m feeling so much frustration and guilt about everything. It’s like I can’t get used to this being the new normal now. I feel guilty saying it but I miss how things used to be, I miss how my mum used to be, I miss my best friend

I have had a very difficult week. Too many appointments, unusual health issues occurring, & holidays, oh how I dread them….They highlight how isolated my family is. It’s the 5 year anniversary of my husband’s triple bypass and he’s a health nut now that is incapable of making any situation not about himself. Our son Truly needs help with everything all the time & I am feeling wilted under the criticism which is unwarranted, I never stop moving & when my husband gets called out on it he backtracks, but his personality has changed so much. This is a rant! Swimming laps each morning keeps the depression at bay, but I just read that to pool is closed temporarily due to pump failure. Bad morning, I feel robotic & the air quality is poor so I cannot go outdoors. f$&k me I’m falling apart

My LO can walk but needs a wheelchair to go anywhere further than 20 feet at more than a snail's pace. I used to go on walks all the time through a state park nearby, and she would love to go with me, if we had a way to do it. The path is dirt, it's relatively flat (no potholes) but has some inclines and declines. I have the strength to push her, but my concern is having a chair with wheels that can handle that kind of terrain. Think jogging stroller. I can take my double wide jogging stroller through there. Is there something similar for wheelchairs?

Were you a caregiver to a mom or someone else and have navigated through the loss and are on the other side reclaiming your life? Please share your journey/process. I am looking for hope that it will get better.

For six years, my identity has been first caregiver, then anything else. Caring for my mom has been the center of my world and everything else was secondary. Caregiving has defined me.

I’m scared that I won’t have the tools to push through the pain, loss when it happens. That I will be stuck. I’m a planner and want to lay a foundation for my life post caregiver.

Hi everyone, my grandmother is an 82 year old woman who has been working as a server in a restaurant for the past decade. She is Japanese and works in a japanese restaurant and has little to no english skills. Her husband passed away years ago and she currently lives with her daughter (I’ll call Lena) in a very small rural town in the midwest. She drives over an hour 4x a week to go work in the restaurant because it is her only form of social interaction but She has come to the realization that she cannot work forever and her body is starting to give out on her.

She is miserable at home, has a elementary school education, can’t speak english, and never learned to really use technology (no iphone, no computers). She has no hobbies and no friends outside of work. Her friends from work are all too busy to see her outside of shifts and can’t make the hour long commute to see her. The area she lives in doesn’t have any asian people at all pretty much and she is extremely shy about meeting new people who aren’t japanese.

She has 3 kids: Lena who is a shutin and although lives with my grandma, comes home super late at night and eats takeout in her bedroom with the door locked. my uncle (Sam) who lives 5 min away from them but has bad relations with everyone in the family Nd talks to no one. and lastly my dad (Victor) who is nomadic and is a world traveler with no permanent residence…. I on the other hand am a broke recent graduate living on the otherside of the country a several hour plane flight away in a cramped urban city apartment. There is no other family and I am the only person under 60.

She has no community and nothing to do. She can’t go back to Japan because no one in the family can afford to secure her an apartment and her only family member there has a spouse who is a chainsmoker and my grandma can’t stand it. the part japan my grandma is from has a unique culture/dialect from mainland japan (Okinawa) and also drives on the left side and my grandma only knows how to drive on the right side. Okinawa doesn’t have good public transport and isn’t very walkable aka she can’t get groceries or do basic things even if we somehow managed an apartment for her.

No one in the family cares or knows how to help her so the plan is for her to retire, sit in front of a tv for 5-10 years and then probably die. I’m not close to her but the idea just saddens me a lot I want to find some way to help her…

It’s been 4 months since my (M55) wife’s (F55) TBI.
The outpouring at first was overwhelming (almost too much). I knew at the time it would fade but it doesn’t stop the sad feeling.

Texts from family and friends went from everyday down to a trickle. Calls are even fewer. I still have the kids home from college for a bit longer but even their presence is less and less everyday.

I knew from the beginning that everyone else would eventually get back to their lives and I had a pretty good idea that my life was now on a different path.
I wasn’t prepared for all of this, but who is.

Thankfully my low moments aren’t the normal (yet) but when they hit, they hit hard.

Had to vent. I guess I’m “in my feelings” a bit today because the rest of the US is celebrating and I feel a bit left behind.

Also, I found this group and have been lurking for a few months now. It really does help to hear stories from the only people on this planet who can relate to your life. Thanks to all who share!

I care for my dad (81) he’s his own person. He’s fairly independent. I was told today by a family member, that I don’t pay enough attention to how he’s feeling. He was having a good day but had a stomach ache.
None of the rest of the family members offer any real help. But enjoy their lives knowing that I’m caring for dad.
He has had a rough last year, diagnosed with prostate cancer 3.5 years ago, was in the hospital 9/25 for kidney issues (resolved), 10/25 had a heart attack (no damage to heart) and 4/26 sepsis. I love him to pieces but I’m stressed, anxious and have some burn out. Nobody else goes to his appointments and to get my sister (who lives 7 minutes away) to come and hangout with him is like asking for her first born. I just want to be able to go out with friends maybe a trip but I can’t because who will make sure he’s okay. I don’t know how to do this …

Hello everyone.

First of all sorry for any typos I'm on my phone. And second, this is my first post on reddit. Hoping to find kind strangers in the internet.

Recently, my 85 has old grandmother fainted(heart wave where we live), fell and now has a small fracture on her femur. Doctors chose not to operate as she has great health (no osteoporosis no arthritis no health conditions) and the fracture is small. She was ordered 5 weeks of complete bed rest. No exceptions.

Nobody in my immediate circle has any experience taking care of a bedridden elders. I've tried to read as much as i can. Vaseline on pressure spots to limit chances of ulcers. Constant rotation (which she does herself). Learned how to bathe her and change her diapers.

Unfortunately, she already had diaper rash so her lady parts burn her. I smothered her in A+D ointment. But if anyone has a different recommendation, I'm open to suggestions. Seriously, anything to help her feel better. It pains me every time she winces.

Any other advice is welcomed. I'm learning and trying to be the best for her. We want to make it through these 5 weeks. And i want her to be a comfortable as possible.

Thank you!!!

I won’t bore you with the details but the short version is I have been taking care of my mom in my home for 3.5 years, with essentially no help from 2/3 of my siblings. In fact, they stopped talking to me because I was “mean”. I am convinced they are dumpster fires with narcissistic tendencies, so I have just tried to be grateful I don’t have to deal with them much. Anyway, for some reason they have now decided they care about me and one of them has offered to host my mom for “a few weeks” in her house. 3 years ago I would have jumped at the idea, but mom’s dementia has really progressed. She essentially has no short term memory and relies on routine for her security. She is very dependent on me for everything and I think it’s likely if she slept somewhere else she would just get scared and call me in the middle of the night like she did when she was in rehab 2 years ago. What do you think? Should I be open to it? Maybe I’m too far down this hole to know what’s good for me anymore

Before anyone jumps on me, I did 5 years of live-in caregiving for 2 family members, which let me organize things to switch to long-distance with visits for the last 4 years for 3. So I do know about both kinds of caregiving, first hand, with a heavy load.

At the end of the live-in period, I was diagnosed with caregiver burnout. I didn't get time to rest, just switch gears.

Now, 4 years into this model, pretty sure I'm burntout again, but things are too crazy to bother trying to get myself seen to get a diagnosis that doesn't really do anything right now.

I'm super frustrated and afraid right now because I can't manage enough on any front.

And there is no one else in my family to swoop in.

One in my care died, a few months ago. The other two are in long-process of moving to 2 different locations. Thankfully one is a care home. I say long-process because I knew, even with our hired help (who keeps the basics running day-to-day while I'm away for around 3/4 weeks), there was no way we could handle a fast move, so we're doing it over the course of a month.

The thing is, I'm so burnt, I'm overwhelmed beyond functioning a lot. So like, for example, I didn't pre-book an upcoming travel ticket like I usually would, and now, trying to do it late and more costly, I'm feeling overwhelmed even just deciding on travel time. All the usual weighing of factors is freezing me right up. I'll probably manage, somehow, to push through and make a decision and booking soon, but odds are high I'll miss something in my planning, packing, etc.

I'm headed there for a week again, and I have no idea how I'm supposed to manage that right now, seeing various healthcare professionals with them, maybe banks, dealing with the estate still, etc, and having to do major packing and moving stuff too.

I've felt overwhelmed for years, yet usually manage better than now.

I sometimes feel stupid/guilty that I do so much less physical work on this now, yet I'm so depleted. The truth is, for me at least, the mental/emotional load is harder. I hate the weight of it. So many decisions that I can only do whatever my best in the moment is, but I would never have wanted a job anything like this. I do this because I deeply care and if I didn't no one truly would, they'd have just been shoved aside and probably fleeced in the process and probably all dead long before this first death from stupid greedy selfish neglect.

I'm finally setting more boundaries/limits. Been working those up for a couple years, yet also hitting setbacks during acute cancer care and such.

It's not enough.

I have to somehow keep pushing through this month, then things djould start getting better, for everyone really.

I guess I just don't want to feel so alone as a caregiver who is burnt out not from changing diapers and helping with transfers, but trying to manage care coordination with healthcare and hired help and managing logistics, orders, banking, etc.

I'm not the only one who is drained from this side, right?

For background, my parents were horrible to me so I cut them off. Then when I got married, they interrogated my grandmother to try to get information. When she refused, they cut her off so I took over all aspects of her care. Its been almost 5 years now. I'm her health care proxy and power of attorney, I managed all her medications and appointment and bills and such.

She'll be 80 this fall and her health just keeps getting worse and I feel awful. She's been in the rehab side of the nursing home for about 3 months now. She was sent over after falling again and the ambulance had to come get her and they said she needed physical therapy. But she was evaluated after a more recent hospital stay and it was determined that she needs 24 hour care. She has heart failure, diabetes, kidney disease, she had endometrial cancer so she had a full hysterectomy, high cholesterol, high blood pressure and current worst cirrhosis. She's on 14 medications for everything she's got going on.

She was first diagnosed with NAFLD (non alcoholic fatty liver disease), that progressed to NASH (non alcoholic steatohepatitis), and now it has progressed to moderate to severe cirrhosis. With the cirrhosis, her ammonia levels can go sky high and cause hepatic encephalopathy even with all the medications she's on to try to help it. When this happens, she doesn't know who I am or what year it is. She thinks she needs to go to work when she's been retired for like 30 years. When it gets super extra high, she becomes almost unresponsive, like she looks right through you and its terrifying.

When she first went to the rehab, she was ok. Her levels were doing ok, she was only slightly confused but she was able to bathe herself, take the medication they'd hand to her and participate in physical therapy. But after this last bout of hepatic encephalopathy, her confusion isn't getting better. She doesn't recognize me most days, she can't talk on the phone and she can't care for herself. She can't give herself the insulin shots anymore. Her doctors think this may be her new baseline. Her ammonia levels have been normal for almost a week now and she's still just as confused as she was when it was high.

I'm working with the social worker to get the paperwork started to move her into long term care and I feel like the worst grand daughter in the world. I feel like I'm failing her. I recognize that I'm not able to give her the 24 hour care she needs. I have a toddler that starts school in the fall and I start college in the fall. I have a husband and pets and household to take care of. I recognize that I don't have the ability or skills to care for her the way that she needs but I still feel awful about it. I know at the nursing home she's being watched and I don't have to worry about finding her on the floor again or getting a 2am call with her panicking because her blood sugar is in the 500s again. And they have activities and visiting therapy dogs and a dining room to eat with friends. They have a bus to go on excursions. I know she's safer there than at home. I know it's not safe for her to live at home anymore.

But I feel so guilty that I can't give her the care that she needs. When she has those brief lucid moments, she knows where she is and she doesn't want to be there, she'll cry that she wants to go home. But she can't go home.

And then last week my estranged father called the nursing home trying to get information about her and he was told his name wasn't on the list so they couldn't tell him anything and that he needed to contact ME to know anything. He still hasn't contacted me.

I feel like I'm in so far over my head with paperwork and trying to clean out her apartment and her garage and trying to find the papers to sell her car since its her only real asset and doing paperwork for the bank to get years of financial records for the nursing home paperwork.

I feel awful and guilty and anxious and sad but relieved that she's safe and in good hands.