What is the one thing that bothers you the most about caregiving?

Another day, another venting. I keep thinking: NOW I can relax for some days. But new problems appear every day, and I help my mother. Today’s venting is that I must love myself more.

Now that I am not a caregiver any longer, I can say that my life has changed dramatically. I was a caregiver for 10 years mostly for my mother, but also for my dad and my beautiful sister. It took a toll on me and I developed cancer halfway through and have been treating for 5 yrs for NHL. Everyday was a massive job for me and I took it humbly and seriously. My mother needed so much help and everyday was like going to a very exhausting job - both physically and mentally. Whenever I think back on that time, a feeling of extreme dread comes over me and I have to snap out of it and realize that I don’t have to do that anymore. I saw everyone through til the end and I feel some peace that I was able to do that. Not that I recommend this to everyone. It was a journey that was part of the path I needed to take, and I accept it at that. I am not a martyr, and I expect no kudos. It is what I chose to do, mostly because there was no other way. Peace to everyone who is walking this path now. You must do what is best for you and your soul too. Also - Vent whoever you need to! It helps. I certainly did that and it helps get you through to the next phase. Blessings.

Another day, more venting. But this time, to say: I wish you a GOOD, Good Friday! Wishing us all to do something positive, for ourselves, today - something that helps our own health. We're so busy saving other people's health. Happy Easter, all!

Being on a hellish, emotional rollercoaster ride…

The hellish battle of trying to have a sliver of privacy and freedom. I am losing this battle. It truly is a rollercoaster. That being said, looking forward to having my daughters and their families here for Easter, time to laugh again! Wishing you all a Happy Easter.

This has been really p!ssing me off lately… I had to quit a lucrative job I found after we opened back up in NY from Covid to come down to South Carolina to take care of my mother who had a heart attack in the beginning of January, also in mid level dementia. She doesn’t have a dime to her name other than her home so hiring someone was out of the equation. As POA I’m trying to get all her ducks in line to sell her house and place her in AL and it’s been nothing short of a nightmare. The daily barrage of cursing, telling me she hates me, not eating meals out of spite when she’s upset about something, threatening to call the police because I won’t give her her car keys are driving me insane.

Bowel & Urinary Incontinence is my biggest worry & problem.

I’ve tried to care for my loved one for 8 days & this situation was a nightmare for us both. He got a UTI & went back to hospital. He can’t feel when he needs to go so cleanup is a disaster. He is bed bound & has a lot of conditions… type 1 diabetes, congestive heart failure with pacemaker/defibrillator, kidney disease (has been in dialysis, but is off it now), Rheumatoid arthritis, diabetic retinopathy, wet macular degeneration, very poor vision, lymphedema in left arm, left black heel & toe with poor circulation to left lower leg, high blood pressure, & short term memory loss (dementia) from 4 strokes & a cardiac arrest after his 4- bypass surgery in 2017.

He got sick 9 months ago with a blood infection (Staph) & was on IV antibiotics for 6 weeks with fluctuations in blood sugar & blood pressure. He’s been in 2 hospitals & 6 rehab/ skilled nursing facilities over the past 9 months. He is bed bound now after falling 3 times in a rehab place & broke his hip. Hip was repaired but he cannot stand or walk on his own anymore. He can’t sit up without help.

Previous to the 9 months, he was walking with a cane, walking around block with me & sitting outside, going to bathroom alone… but he did have poor balance.

now he is very weak & only has use of one hand, his left hand & arm stay swelled up & he cannot open his hand from a fist without extreme pain.

My spouse is a complicated case… but I can handle insulin, meds, everything except the incontinence issues. I feel very capable except in this area… I am small & not strong so I cannot lift him or move him around easily without help. He is 200 lbs approx.

sny advice is appreciated.

Yes, it's all about Mom, now and forever. She's sly and manipulative in the extreme. So far, she's been careful to go into speeches about how much she loves me (read: needs me) right when situations are at their worst. These hand-wringing dramas are often accompanied by tears and apologies. In reality, because Princess (dad's nickname for mom) has senile dementia, she has NO IDEA what anyone, including healthcare professionals, have done to keep her safe and warm and well fed.

I may be her slave, but I am not her fool. I know when people are lying to me.

Unfortunately here I am again. I really thought I had turned a new page.

I’m in a terrible mood. Please, no need to read. I’m writing just to vent. Extremely unhappy. It has to do with the aides. We’re having problems finding good aides. (Not just for the reason below; other things happened).

My mother’s iphone today suddenly has a passcode. We can’t unlock it. There’s no way my mother did it. This means maybe one of the aides did it. Very stressful. Who knows what bad things they’re doing with that. In a few hours, an IT man will take a look. I see there’s a small chance it was a weird iphone glitch (like after software updates), and suddenly a passcode is asked. (We didn’t update, but maybe it was an automatic update).

The IT man will know, when he sees the phone. The stress comes from the possibility that an aide maybe did this intentionally.

Stressed. Depressed. And not nicely dressed. Very unhappy.

Having no support system & not being able to be better for my mom

That my family does not realize that I’m so stressed out. I’m having complete breakdowns where I cry hysterically for hours. Sometimes I just cannot function. I go to bed with dread and wake up with dread. Some of my family members are mad at me because I have melt downs and can’t deal with it. All
of their sympathy is with her and none for me. They don’t seem to realize that my outbursts and crying are a sign that something is wrong. That I’m actually having a breakdown of sorts. Mentally I’m very sick and I’m going through it alone. My family members are good loving people and I don’t think they would knowingly hurt me. They are just ignorant of what it’s like to care for her (97). They visit and tell her they love her and not a word to me about how I’m handling it. Yesterday I had a serious breakdown. I was in such a bad way that thoughts of suicide entered my mind. My daughter got mad at me for it. She came over and helped her get up
and dressed and left not having said a single word to me or even making eye contact. She’s furious at me because I told her I couldn’t do it. I’ve turned into someone I don’t like. I don’t want to be like this. I don’t want to be angry. I don’t want to cry most of the time. I don’t want
my family mad at me.

My father makes me angry and sad. His short-term memory is shot but he still wants to control everything around him. He was and in many ways still is a very smart man. He was a CPA and tax attorney. And he was always, always in control in our family, always calling the shots. Now, he still wants that level of control. He needs to know everything that's going on and when I try to explain he can't hear me because he has serious hearing loss but refuses to use the hearing aids I got for him. So I have to repeat myself again and again. And then two minutes later he's forgotten and I have to start it all over. And getting him up and into the car to go to the doctor is almost always a struggle. Unfortunately, my patience is thin most of the time because of my own problems. I usually feel sick when I get in the car to drive to his house. Lately, though, he has been more compliant and in a way that makes me sad. It's like he's really beginning to fade away and as much as I've always had a hard time loving him I don't want him to go.

I am just so tired from the morning routine. I have about 30 minutes before he wakes up and it starts. I have to race him if I'm upstairs and hear him start to shuffle since the chance of him waking up wet is like 80 percent before he sits on a surface that I deeply don't feel like cleaning up. So then the Depends change, which is arguably the most cooperative he is (thank god) before breakfast. Then it's time to make breakfast. Then its mitigating the mess he might make, then the dishes, which I am admittedly a princess about and always leave for the caregivers.

I worked in restaurants forever and honestly hate cooking. I also am so tired of his three incompetent children. I should be sealing a career direction. And this has destroyed my relationship, a break-up is on the table because my exhaustion doesn't breed the most empathetic attitude.

I'm tired of the rate we pay and then as soon as I get home theres a diaper to change. Like come on. Everyone should know that's what we're trying to avoid by hiring. I can't wait until we get him enrolled in adult day care. Saves money and he gets social stimulation and can b**** and moan to other people with dementia who it won't exhaust. I still also have a lot of compassion and cry out of guilt when I'm short or not giving my whole compassionate self to him, I know he feels like crap and he doesn't have aphasia, he knows that his memory and cognition sucks.

I'm just tired of going at it alone, its aged my face 5 years in 1.

For me it’s the isolation that I struggle with although I have siblings that help some it just doesn’t balance out. I feel like a b**** for complaining and a bad daughter for not being grateful for the extra time I have. So sick of outsiders saying that we are so lucky to have them both, like we are judged for saying it’s a lot to deal with. Thank Goodness I have stumbled upon this forum, I am so grateful that I am not alone in feeling alone. I am youngest of 5 living siblings, being 8 years behind I was the opps baby. At 9 years old my sibling drowned at 17 he was a twin, my parents fell apart and I became very good at handling grown up duties, because of it I have had an unhealthy emotional bond with my parents always tried being the easy kid , the strong mature one. Truthfully inside I was terrified Mom would take her life or my Dad would not come home at night. I was able to go out in life and make my own family but put my parents a top priority only second to my husband and 2 children. Then aging began to take small things away and I filled in a little at a time until eventually they rely on me for everything. Mom has rheumatoid arthritis that has stripped her mobility having had 6 different joint surgeries and then in 2015 heart valve surgery which only helped for s while. Now almost 2 years into hospice we have told her goodbye 7 times and she rallied now dementia has begun. Dad is in dialysis 4 days a week in end stage kidney failure, blind, no feeling in hands feet and falling a lot. Thankfully he asked to go to nursing home because he was feeling like a burden but now he needs daily visits or he feels unloved. Meanwhile I am with Mom in here home 12-16 hours a day 5 days a week and she cries daily about missing Dad but says she’s not joining him in nursing home. I quit my job 3 years ago am financially struggling and my marriage, health and sanity are all in trouble. Sorry this got to be a long post to a short question but I let it flow today. Thanks all

Her constant negative attitude. How she won’t even try when PT comes in . I’m so burnt out caring for her , that I actually feel like I hate her . Then , the guilt . She’s driven any friends of hers away years ago because she’s so negative. I don’t know if she’s ever said anything positive in her life . My BF helps care for her , which is saving MY life . But he does so much for her , that she refuses to do anything at all for herself . She is a privileged , lazy , mean , nasty , woman . I’m losing all compassion for her . All she says constantly is “ I can’t” and “ I don’t want to “. I appreciate this forum , which I just discovered…. I feel like I can say all these things and maybe not get lectured or told how fortunate I am that she’s still alive . I’m not fortunate. I’m turning bitter . And I hope she doesn’t completely destroy me before she leaves this earth . Because of this forum , I’m starting to see that my life doesn’t have to be a sacrifice to her . I start back to work next week, after taking time off to get her settled back into home . She had fallen an broke an arm and was in a rehab care home for months . Where she lost all ability to walk, is incontinent both urinary tract and bowel . The only thing she will do on her own is feed herself,,, but even then , she says that’s too hard . And wants to be a baby . Yes , she actually wants to be a baby … and says so . She has dementia, though I question that . I sometimes think she fakes things , so she can be babied even more . Even her PT is over her , cause they realize it’s a waste of time . She could walk again with a Walker,,, but refuses . I’m not looking for advice , I’m just venting . I have two sisters ,,, that are no help . I’m the youngest . And the one that has always had to be there for the parents . My dad died years ago and had Alzheimer’s. My mom doesn’t appreciate my help , but thinks I owe her that ?… because she’s The Mother . Yet , the sisters get to slide ,,,,, as usual. She’s never been nice to the grandkids , so they don’t come around . If I say anything at all to her , she will say something mean in return , just to argue . She loves to argue . I have to bite my tongue and walk away . Though I don’t always ,,, and that never ends pretty . Her family lives into late 90s and over 100 ! ,,,, I don’t plan on taking care of her indefinitely,,, I am 67 now and lived in a bad abusive marriage for 43 years , before I got out . So , obviously I am willing to put up with a lot of crap . Too much . I know she doesn’t want to live anymore… but she has no choice. I didn’t realize what 24/7 care meant , until I’m doing it . This is not for whimps . I hope when this is over , I will find some kind of satisfaction that I did all I could … that this nightmare will have some redeeming factor ? I feel like I’ve given her the greatest gift of love , by caring for her ,,, showers , meals , wiping her butt …. My time , energy ,,, sanity . But , right now , I wish she would lose her voice ,,, or give up the ghost completely. I don’t think I will feel any regrets or sorrow . But , guilt . Yes , there’s always room for more guilt .

I don’t seem to fit in. I know I am very fortunate and shouldn’t be discouraged or burned out like so many on this forum, but I am. First, the positives. I love him. My husband is fairly healthy. Sharp as a tack mentality and kind. In 2020 made a full recovery from stage 1 prostate cancer with 8 weeks of radiation. (No surgery, thank God.) Summer of 2021 a bout of pneumonia resulted in a 5 day hospital stay. He didn’t have respiratory symptoms but extreme weakness and falls. Medically, a full recovery.
The challenges. His mobility has yet to recover from summer 2021. After months of PT he was discharged for lack of progress. Why? He simply will not apply himself. Modest activities that will help him grow stronger and improve independence are met with excuses and empty promises. He then puts on a show of aches and pains, hangs his head with self pity and laments “I can’t do anything”. The theatrics actually embarrasses himself. I encourage him to see a counselor, which is another empty promise. He no longer drives. He is excessively dependent and wants me to do EVERYTHING. Claims we need to get out and be social but cannot walk more than 20 yards with a ridiculous amount of drama. Is this Munchausens? It’s not dementia. It’s his self destructive mindset. I understand at 81 he’s slowing down and has limits. Why would a smart man, accentuate infirmity instead of putting forth a reasonable effort to improve his (and our) quality of life? We are both retired. I am 62 and and if I knew this is what lied ahead, would have stayed working.
As the wife, I feel like I have no escape. I don’t get to go home and leave it behind for a few hours. I’m losing respect for him and the resentment for what this has done to our lives is 24/7. Yes, I get out on occasion on my own. No, he won’t join activity on his own because his “what if I need you to ——- for me?” child-like dependence. I feel tremendously guilty that I dream of a different life, far away.
Thanks for letting me vent. It’s the first time ever

JeanLouise;

What makes you say he doesn't have some cognitive loss? Has he had neuropsych testing?

Folks can present as "sharp as a tack" and still be in the early stages; lacking motivation, insight and executive functioning (seeing consequences of actions) are all symptoms.

New gripe: dementia and/or incontinence DESTROY leaving the house on time. We lose 10 dollars of value in aide coverage every time because something annoying happens right before I leave. It feels like he does it on purpose, even though I know he doesn’t.

last night while changing him, he spit on the floor and when I sternly asked him why, the answer was “I wanted to see if you would notice”. Then launched a shoe in my direction and claimed he didn’t throw it at me. Dementia blows.

not looking for advice, just venting

Feeling inadequate and guilty because I don’t have skills to take better care

The keeping your feelings to yourself because you don't want to burden them, even though they are burdening you. Them viewing you as their enemy even though you are the only one who has stuck around. I can't stand how my mother is always looking at the downside of things and not appreciating what she does have.

I just hate the term “caregiver” with every fiber of my being, along with all the goopy platitudes, useless advice articles (“phone a friend for support!”) and my favorite, “Take care of yourself” (so you can return to giving up yourself until you die while your siblings run and play!)

it’s not an “honor,” it’s a demeaning sacrifice of yourself for ungrateful people who don’t care about you. At the end of it all, you are left without health or finances, wishing to just die.

My FIL with dementia always has a depressed mean look on his face, he also has a chair that spins 360 and turns in it every direction i go to glare at me, sucks the life right out of you.

geriatric brats

A person that does nothing for themselves. My MIL is horrible. She sits in her house all day complaining or making excuses on why she can't do things. It is so irritating. I have come to the conclusion that she will live this way until she transition. I have had talks with her, tried to encourage, support and even tried to solicit a few of her elderly neighbors to be her friend and she just won't do anything. I have completely stopped trying to help. I can't deal with it anymore.

Being a prisoner of a demented person's whims, needs, and wants.

Firstly, your MIL is clearly a narcissist. Anyone who thinks that “everything is all about her/him” is a narcissist. A clear sign of a narcissist is when a person shows no empathy or sympathy. Secondly, MIL and FIL are related by marriage only and not by blood, so I don’t understand why an in-law has to take care of them.

Having to consistently be present, kind and supportive when inside I want to have some time for just myself again.

It's the same for me! I feel you!

I hate changing my husband's disgusting poop/diarrhea diapers 12 times a day, but what I hate more than anything is his sense of entitlement. My knees are giving out and I'm having my own medical and mental health challenges, but instead of considering a second caretaker to give me some relief, he has no problem screaming my name constantly even when I'm trying to sleep or work online. He does not care about my feelings or my future of being a widow in my early 40s. Just continues to be difficult, demanding, uncompliant, and expect a free ride from me, his wife, who feels 80 at 41. Edit: He's not an elderly patient with an unexpected illness; he's a 41-year old type 2 diabetic on dialysis who refuses to take care of himself and let himself go blind, unable to walk, in diapers, doing whatever he wants at anyone's expense.

I can understand feeling helpless, but I can't imagine expecting someone to just drop everything for me 24/7, even when they need attention themselves. It is a living hell that I understand too well.

I agree. Until recently, my father would have walked over my unconscious body. Lately, for whatever reason, he has been saying thank you. But I really hear you. I hope to god that if I do end up depending on other people, I respect them and the work they do to make my life better.

I worry about the future progression with my husbands dementia. Will he one day forget who I am? What does the future hold? This is what I struggle with. I try to live one day at a time, but I struggle and worry.