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

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

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 .

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

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.

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.

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.

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

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.

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.

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.

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.

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.

Being on a hellish, emotional rollercoaster ride…

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!

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, 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.

One thing that REALLY bothers me is when I get up in the morning. All I want is to have a quiet cup of coffee before "go time". I tiptoe past dads room hoping he is sleeping so I can have 15 minutes to myself.... oh heck no. I hear this little voice saying "good morning" as I try to sneak by. Could be 1am,4am,7am it does not matter.

Another day, more venting. Hopefully soon I stop posting. That would mean something's going right! Another thing that bothers me the most about caregiving?...I think I've set up my life totally the wrong way. If my personal life from the start had been more orderly, when my mother started to decline...My guiding words now: good order.

Seeing my mum becoming more negative and irrational every other day keeps reminding me of my eventual self in years to come. I do recognize some characteristics and personalities that we have in common and so I have the fear it will hit me the same way. Because of the fear my anger flares up managing her and I always end the day guilty and upset. It's a vicious cycle :(

Grace (www.mycareprints.com)

Good luck to all! Another day, more venting. Another thing that bothers me the most: I noticed that my mind is so filled with caregiving things, that I forget to have normal thoughts, normal problems. I watched a movie recently, and suddenly remembered, "Oh yeah, those are normal everyday problems people deal with." I miss focusing on the normal problems.

Ariadnee,

My mother does not have dementia. She always did the singing/ humming and it always pissed me off since I was a little kid. Only now it really gets to me because the combination of the singing and humming along with the tv blasting at its highest volume all day long and into the night, is enough to get to anybody.
Nothing out of the ordinary is 'grinding my gears' and I thank you for your assessment, doctor.
It's the combination of the tv and the singing/humming together. I can tolerate one or the other but not both.

I have no reservoir of memories of receiving care, affection, or support from my mother. Yet now I am helping care for her to support my sister, who is totally exhausted from her own responsibilities including partner's chronic illness and mom's increasing needs. She admits my support helps - but also insists that mom is managing fine.
She and the other siblings and one of my nieces all feel that I should be giving my time out of love to take care of my mother.
For family reasons, at the end of this summer I will announce that we need a geriatric care manager to find us more help. May create a rupture in the family but I realize that I am not really connected to these folks very well, anyway.
Thanks for letting me vent.

My confession….I’m no good at medical issues! Urine, hacking, coughing, poop, changing diapers, etc…
It’s not their fault at all! Normal aging. They don’t want this either.
I will do it, of course, but that’s my confession!! Okay I’m done!! ☹️

I'm sorry, but I just need to vent this. I've been a caregiver for a long time and can maintain a high level of patience. Otherwise I couldn't do this kind of work.
I have been taking care of my elderly mother for years now. She doesn't have dementia, but is a miserable, negative, gaslighting martyr. I'm alright with that and deal with it well enough.

I simply cannot tolerate another f*&%ing minute of the humming and singing though.
The blaring tv from early in the morning until late into the night that can be heard across town, I can cope.
The constant negativity, I ignore it.
The portable commode cleaning ten times a day, sometimes more I just do it.
I can't take the humming and singing. I don't ask her to stop all the time because if I did, she would know it gets to me and would double down on it.
Does anyone else have this problem?
What the hell is it with the elderly and the go**amn singing and humming?
Thank-you for letting me rant. I feel better.
Best regards and with the compliments of, BurntCaregiver.

venting,

You asked why it's important to insist that your next caregiver have a driver's license.
Making a valid driver's license, proof of vehicle ownership with insurance and registration a requirement to work for you is a good indicator that the person you hire not only works consistently, but also has transportation.
I remember some years back a friend of mine needed to hire a private-pay caregiver for her MIL who was in the early stages of dementia and having some mobility issues. Her MIL lived too far for me or any of the girls I call on a job to take it. So she asked me to help her with the screening process. They didn't know what to ask or what to insist on. I do, and I'll tell you.

1) Valid driver's license and proof of car ownership with insurance and registration

2) Three work reference phone numbers, from client families that your potential hire has worked for in the last five years. You can be flexible on the number of references because some private-pay caregivers will only work for one client family for several years. I've done this. Check up on that family.

3) Police back round check from the last place she lived in for three years or more.

4) Proof that they do not have an arrest record.

5) Do they have kids? If so an explanation of how they handle their childcare needs.

6) A clean drug test (not more than a month old) that the potential hire brings with them upon interview. Then random periodical drug tests that you pay for.

7) Have the potential caregivers you interview do a job application in writing. It's always good to make sure someone is literate.

8) Last but not least. If you're hiring a caregiver for only a few hours a couple times a week and they ask to be paid in cash, don't make a big deal about it. If such is the case, pay them literally in cash money. Not a check.

I wouldn't hire a student if I were you because school will always come before their caregiving job and it should. If it's a nursing student and the caregiving can count towards some of their clinical hours that's different. Sometimes it's allowed.

Marialake, thank you for this hilarious post, you have absolutely made my day! The humor lies in its ridiculous truth, and because of your amazing attitude and sense of humor you are going to keep rocking this.

Another day, more venting. I guess the day I stop posting, means I'm doing well. I do wish and hope everyone on the forum is doing well! Hazelboundary, I need to follow in your footsteps. I can't right now. My mother is in the middle of a crisis (not medical). Problems with the aides. We'll need to change agency. It's so hard to find reliable caregivers. We're hoping to have better luck with the next agency. I'm arranging it today. How do you guys cope with crisis after crisis?

It really comes down to luck - if you're lucky, there are less crises. If you're lucky, there's reliable outside help.

One more stupid thing my husband has done, has really added to the stress. Since this is a public forum, can't go into the details. But, dang-it, it just seems to be never ending. Just when I think everything is almost going somwhat smoothly, then once again there's another issue. It's so discouraging.
Glad this forum is here, really helps. Thank goodness for Zoom making it possible to join support groups. Yet, the consistent issue I've been hearing and reading about is the isolation of the caregiver. So true.
Tomorrow is another day, I'll get through this and know I'm doing my best.

The one thing that bothers me the most about caregiving for my husband is that it is a full time job with all responsibilities on me, and there is no light at the end of the tunnel.
I did hire an aide a few hours a day, a few days a week but it’s not enough, I’m still doing tasks that I never thought I’d have to do.
I'm physically & mentally drained, and would love to have a week long break away from him to be able to feel calm, relaxed, and rested.

What used to bother me the most was the stress, until I set up very strict boundaries. I got so many pycho-somatic problems from caregiving for my Dad, that one day I drew a line. My Dad is a sweetheart. But the stress was killing me. I couldn’t have a moment to myself. I was either worried, or dealing with immediate problems. I could list an essay of 10 pages on my physical ailments due to the stress. I decided it wasn’t fair. I had to draw a line, even if that meant not spending all my time helping. I couldn’t concentrate on my work. I was getting poorer and poorer. I just “woke up” one day. “Hazel, you’re going to ruin your life. Wake up!” So I set up the best care, and dedicated my time to myself. The moment I did that, my stress went away; my physical symptoms disappeared. // You really don’t realize the amount of stress you’re under, until it’s lifted. // I see my Dad, but now I get to enjoy just the nice part. I’m lucky I drew the line before it was too late.