Be honest, how many hate being a caregiver?

To be honest, I hate being my OWN caregiver! Nothing...from my family...Nada...sorry..too bad...don't have the time...do it yourself...you don't look that sick???...maybe wait, and you'll get better ( I have 4 incurable diseases....YEP THAT IS FOUR! ) I don't even get a Christmas, Birthday, Easter, or Fathers day card.
My total monthly income is my Social Security Check...I had to declare bankruptcy due to no medical insurance and had to pay out of pocket for all my meds, and doctor's visits, and tests for over 7 years. I had to cash in all my 401K's, and all my employment retirement money early because if you don't have any insurance, you have to pay cash upfront. Lost the house paying off the medical bills, cannot drive anymore and don't own a car.

I actually have gotten my FICA scores up to 750 marks, but I have very little left over every month to do anything, but watch TV.

So you real caregivers...how do you feel now????

I would love to hear your answers......!

Too many responses to read through all and digest, so I focused on the initial post and follow up comments to others (reading their comment too.)

I've not been in your shoes, but can still sympathize. My mother needed care (dementia) and I couldn't physically provide the care she needed. I did the best things I could to ensure she was safe and cared for. I started hiring aides, to get her used to having them around (she didn't need help physically yet, so only 1 hr/day to check on her/meds.) That didn't last 2 months. Next was find MC places near me, so I could visit often and respond to needs/emergencies. On occasion there are others who can listen, relate and understand, but mostly I just had to manage everything for her. My brothers were no real help, not even for moral support or sympathy.

"I have a friend that says she'll listen to me and I can vent to her, but she always end up making it about herself."

There ARE plenty of those friends (and family too) that say one thing but don't follow through. Either she's just too self-centered or maybe tired of hearing it (I learned the hard way not to harp too much to people as they tend to drift away.)

"I've also learned that since my husband got disabled with Parkinson's that those friends I used to have are no longer around. It's ok, that's life."

Yup, when the going gets tough, those who can't handle it ride off into the sunset without you.

"I just know who I can and can't depend on."

This is important. You DO need an outlet sometimes.

"I am feeling better..."

I read you managed to get to church and to have a good talk with your husband. BOTH of those are going to be helpful, esp when your stress levels are up. Can you leave him home alone while you go to church or does he go with you? Either way, try to make this a good habit, hopefully weekly. Just getting out of the house is going to be a relief, even if it's only for a short while.

Try to make the chats happen often too. Being cooped up because of this virus will test anyone's mettle! While you were both probably mostly home-bound before, it is likely much worse over the past year. Shoot for those times when you're more relaxed and he's had all his needs met. Maybe a nice cup of tea and a chat about the "good old days." I'm sure he's going batty being shut in all the time too, along with his medical issues on top of that. Hopefully soon we can start venturing out again. If he can't get out much, but is safe at home alone, try to get some more ME time for yourself. Church. A good 1/2 hour brisk walk. Sitting out in the sun, soaking in the warmth and hearing the birds who will be returning soon. Marvel at how nature brings everything back to life in the spring. The little things.

Is there anything you can do for him to cheer him up, above and beyond the care needs? A nice card with a love letter in it? A treat he hasn't had in a long time? Any simple tasks or games that he can manage?

"Aids are not an option for me, because I can't afford them."

If he can be left home for short periods, probably no need if you can get out at all, doing something for yourself. Full time care is VERY expensive, but you're currently able to do a lot of his care. If he needs a companion while you are out, can you afford even 4 hours/week, maybe 2 hours twice a week? Every little bit helps, but 2-4 hours/week wouldn't be too expensive, for just an aide. Every other week? Once/month? Just so you have some time to care for YOU. Average cost in your state is $20.50/hr, so $40 for 2 hours. $40 for your sanity? Probably less than the cost of therapy! Assumption is your income is too high for Medicaid. If you haven't explored it, do check it out. They DO offer limited hours of in-home care.

https://www.payingforseniorcare.com/north-carolina/medicaid-waivers/community-alternatives-program-for-disabled-adults#Eligibility-Guidelines
Go to 'Medicaid Income Guidelines' - follow the link there. Can't hurt to check, maybe get a free consult.

We all have had frustrations with caregiving that cause BURNOUT!! It's time for a break for you. Just as working people need vacations so do caregivers. Is there a family member, friend or paid help that can take care of him so that you can get some much needed rest & relaxation. Are you able to get Respite Care for him? If unable to find some escape, just get someone to help during the day or night so that you can recharge some. Hope this helps! Read other posts also.

I think the question should have been "Be honest, how many LOVE being a caregiver? There'd be a lot less replies to read.

I was a caretaker to both parents, a dear elderly friend and my husband. While I did it and took care of everything and did a very good job, it was not something I enjoyed. For one thing, when people need a caretaker, they either have physical or mental issues or both and dealing with them can really take its toll on you. Every single person is not made of the same mold. Some can handle blood (medical field) and others will run in horror or faint. Not everyone is suited to be a caretaker. And if you have your own problems and responsibilities which will be affected, you will get angry and frustrated - normal. I am very intelligent, super achiever, fast moving, successful and do impossible things against all odds. I would hate being held back to meet the level of someone who is far below that. I simply would not have the patience and it would get to me. Yet, I excel in other endeavors. So, depending on who/what you are, you will just take tin stride or you will have a really hard time.

I wish I had an answer. I pray every day too. Sometimes I get do angry with resentment I don't know what to do. Like you, I turn to prayer, vent to my sister, cry. Being a caregiver is something I didn't ask for but I will continue with it. I send you good thoughts.

Well "hate" is such a strong, nasty word. I don't use that word often because it is not what I like to try to represent. Now, I will be honest. I do sometimes, resent being a caregiver. You don't mention what health issues your husband and you are fighting. I take care of my mom, so I only know the changes of the parent/child relationship. Now, sometimes I feel like the roles have reversed! I imagine from going from a partner in crime & soulmate, to being your husband's caregiver must be so difficult. Please listen to your husband. He is still your husband, although change has occurred in your routine. Don't be ill with him. It's not his fault, as you know. When your angry, be angry and hate the disease. Hate what has caused your husband to be sick. He needs you now more then ever! Do sweet little things and show him you still love him like you always have. He did nothing wrong. You two have my prayers. It's not an easy road. It's a life changing one! However, like any experience, it's a learning one! For you & him! It's just another one thing that you two as a married couple, will fight together!! Plus, somehow make sure you take care & have time for You! If it's just a bubble bath after he is asleep. You have to care for you first! Take care & keep coming back:)

Stop it ! Just Stop it ! " But by the Grace of God ,there too go I " . I understand what you're going through . My husband has had Dementia / Alzheimer's for 15 years . I get so frustrated I go in a room and just sit and talk to God. . Your husband is dependent on you just as you should be dependent on God. Old spiritual song says When you 're at the end on your rope ,...tie a knot and hold on. Don't hate your husband hate the disease ! We all get tired and frustrated and cry and cuss and everything else. But hold on . When things get rough ,stop and go into another room . Just walk out of the room and . take five and get yourself together. This is not a child's job . It's a responsibility that Jesus expects you to at least try . If it's so bad that you can't handle it then try Plan " B " There should always be a Plan B for anything . Why do I stay and keep on with my husband ? because I feel that he'd stay with me . Sure he gets off once in a while . We do that and we don't have the disease . Just chill my sister and one day sit and hold his hand or sit and look into his eyes and and you'll see the love coming from his eyes saying " Be patient with me wife, don't leave me. I mean you no harm ." God bless you Dear Sister in Christ . Jesus hasn't forgotten you. Hang in there. You have my prayers. ....p.s. and don't expect other people to offer help. " They don't understand how and some will not even try to " Maya Angelo said " When you know better ,you do better ." You're doing a great job and the best you can do . We all are doing a great job who have this responsibility. I'm 83 and he's 93 .I'm helping my husband ,and he keeps me alert . God Bless.

Thanks for your honesty. I also hate being a caregiver for my wife. She's had Parkinson's disease for 18 years but 3 years ago she was diagnosed with Capgras syndrome which is a dementia associated with Parkinsons and Lewey body dementia. The short story is she doesn't know who I am and accuses me of being an impostor. She says her husband lives someplace else and I should quit trying to be him. She knows everyone else in our family - our kids and grandkids, siblings, nieces, nephews and even her in-laws (my family) and they all tell her that I am her husband, but it just doesn't compute. It's really frustrating because her physical needs have gotten worse in the last year and it all falls on me. I basically can't leaver her alone for more than a couple of hours and, with the pandemic, no one will help me out to give me a break. Sometimes I absolutely hate my life. I love her but a lot of the time I really don't like her. She's just not the same person. It's really tough on me. My life really sucks!

I hate being a caregiver for my mother. My mother was not a nurturing type of person when she was raising me. I was able to push my feelings to the back of my mind for decades, and we got along fine. Now that I am caring for her, I find all this resentment towards her is rushing back, and at 65, I am feeling upset about things that happened to me as a child. Is this common?

Don't be hard on yourself. You have the exhaustion and burn out. It is a giving giving giving and little to no time to replenish.
I pray you can find some time out or time at home for yourself, a friend to talk to, something funny to read or watch.
We all understand.

Can you afford to have in home care so you can have you time? You have to be able to take care of yourself.

i absolutely LOVED being a caregiver for my parents . to see them smile and hear them laugh was my Heaven . from helping them get dressed in the morning, helping them to the restroom, preparing their meals, to helping them get ready for bed at night and every single little thing in between was such an honor . and though i wish it would've lasted longer, i thank God for that beautiful time .

Most of us that take up the task, do not figure in the decision of burn out which will occur, and figure in how to take a rest or vacation. Never thought my mom would so drain me. The ten years of taking care of a dementia individual is hard. Yes, I would do it again, but I would be smarter about the reality

I don't know if I hate it, but it has put strains on all relationships. I have been married to my husband 25 years, now. We cared for is Father, without help from his siblings, while he struggled through alcoholism and beginning of PD, and Cancer and hospice, at the end. We also care for my Mother, post stroke, bedbound, paralyzed on left side. My mom is not that hard hard to care for, but my once active and sweet Mom I had, now can be hateful at times, fights me when I try to get her to do things, like baths, and we no longer have a bath aide. Insurance cut them out after 5 or 6 weeks. I have been doing this 4 and a half years now, without much help from 3 siblings. They have their own children to look after, and my sons are adults now and do help. The hard thing for me is my husband watched his father die 3 years ago when he got diagnosed with cancer at the end of his alcoholism. He goes out every weekend with a neighbor friend. And we have other friends who don't take care of their parents at all constantly asking us to do things with them, but have no understanding of what we go through. What I have to go through to find someone to care for my mom while we go out for a lunch date. My Sisters and Brother are all busy working, or doing activities for their kids on the weekend. My husband has FOMO, so he is always wanting to get out of the house and do these things with his friends. This weekend friends invited us to go out of town for the weekend, but he went ahead while I stay home with Mom. It makes me sad and feel used because if something ever happens to him, I would stay home and take care of him, but I think it would be very hard for him to do the same. He says he would, but I wonder if he really could for long. So I may get out once a month to do a lunch date with friends. I make myself available to him when he wants things, but I think he is more needy for his needs, than I am for my own. I simply am just exhausted and want to relax at home rather than try to plan an outing. Our friends who don't have to care give for their parents simply can't understand. Yes I understand I need alone time for my own sanity, and I try to do it, and when I try to talk to husband about things he then turns things around for his needs. Our healthcare system sucks, and though care is out there, its very expensive. I was there everyday while my mom was in rehab, and the care there was substandard. She fell trying to get out of bed one time. I have also heard many Nursing home horror stories, understaffing and substandard care happen a lot in SNFs. There was a man there that was constantly calling for the Nurse every time I walked down the hall to my Mom's room. Then you have to deal with having strangers in your house when you are not there, and the Home Health we had at the beginning of her stroke, never stayed that long. So I just try to go on outings when I have my sons around to sit with mom for a few hours, when they are not working, while my husband gets to go out with his friends when he wants. That makes me sad at times. My Mom and I have always been close, so that is what makes it all worth it. Just hanging in there for now. Hoping I never get sick or to a point where they have to take care of me.

I'm so glad I found you all on this forum. I know exactly that frustration of popping a cork or saying things when I should have kept my mouth shut. In my head I want to be kind and compassionate, having no regrets about our time together and my caregiving to my dear husband. But then I get frustrated and let him know, then I feel guilty etc. I know I am human and will sometimes just not be the best I could be. Good advice here about remembering to be angry at the situation, not take it out on your spouse. I know it helps to have a place like this to come and speak, that can prevent me from venting at him. I sometimes shy away from caregiver forums because they can be negative and depressing. I am happy to see comments of encouragement and strength giving.

There is absolutely nothing pleasant about being a caregiver! We never know what changes we will encounter from day to day or how long our caregiving will last. I resent my position because it has consumed my life. We just have to pray for strength, patience and forgiveness for how we feel and respond at times and pray also for guidance

How can some people really feel as if it’s a “privilege” is beyond me!

Honey you have serious burn out and be I should know because I do to. Remember the kinder you are to yourself the kinder that you can be to him but when you're that frustrated you're not good for either one of you, now if I would just take my own advice I'd be a happier person too. If you don't have the family they can help try aging services or something in your area to help find somebody come in to give you a break and good luck sweetie

I've spent the last three years caring for my grandfather after he had a stroke and I hate it. I'm tired of cleaning up s*** when he has an accident, getting yelled at any time he's frustrated and needs a verbal punching bag, having to get up in the middle of the night to help him get to the bathroom and these are just the minor things.
In addition to this, I also work full time as a manager. So I'm usually working at least 40+ hours a week or more while still caring for him. My family barely helps. Instead they tell me that since I'm the one that's here, then I can be the one to handle things.
Then they and my grandfather have the nerve to get mad at me when I want go out on one of my days off and just hang with my boyfriend or friends. They tell me that I need to be here in case something happens to him. It doesn't matter that I barely go anywhere but work and the house. I have to be there because he needs the help.
So yeah, I hate being a caregiver. Because I'm tired of always having to put others first and myself second. I'm not allowed to have my own life anymore. If I try to tell anyone how I feel, then I'm in the wrong. It feels like my family thinks that my sole purpose to take care of my grandfather while they all get to keep living their own lives.

I found to my surprise I did not have the temperament or personality to be a caregiver.

What a nice surprise to find I have the heart of an Advocate. So I do that now instead.

I love Downton Abbey... Some feel useful & are happy in a Cook or Driver role, but not a Ladies Maid or Valet. Some may find they are better suited to be Housekeeper-Managers. Or maybe even a relation that does social visits from time to time but no hands-on at all. Friendly social support is caring too. Anyone for a scone with jam & cream?

I know I've already answered on this particular post.
I'm lucky at the moment that my father can still do things for himself up to a point. Like shower and toilet himself and get cup a soup ready at lunch. I cook dinner for my husband, Dad and myself as I won't let him touch the stove or oven as he leaves hotplates on.
I suspect however, that he is becoming bowel/urine incontinent as I've found evidence of faeces and urine on the toilet floor.( sorry for too much info) I say nothing and just clean it.
Im sure I'm in for more difficult times ahead. But one thing I'm not going to do is inform my siblings of his progress as they've shown their true colors. Especially my sister.

You need more than prayers for you and your husband. You need help. There's no shame in bringing in some outside homecare. It's okay to let hired caregivers take some of the burden from your shoulders. It's not personal or a reflection on your caregiving abilities to need outside help. At some point everyone in your situation will. No one can do it all by themselves forever.
Please look into bringing in some homecare help. It will be the best thing for both your husband and you.

Me, I hated it...everything about! I hated the way it made me feel...I hated feeling like my life wasn't mind & a prisoner...I even hated shopping for my mother...I hated taking her to the Drs...I hated that everything was a argument...I hated that I could not seem to do anything right...I hated everything about it...I just plain hated it! Sorry for the rant!

My home is no longer my home, it feels like a prison sentence. My mother is in a stage now where she is CONSTANTLY looking for something to destroy. If she can't tear it up with her hands, she puts it in her mouth and tries to tear it with her teeth. I can't even leave her alone to go to the bathroom. I'm her only caregiver and I live alone. It's mentally exhausting. I have to wait for her to go to sleep to get a shower and I'm scared the whole time she'll wake up and destroy something. I miss my life. She started having episodes in fall of 2020 where she would scream, cry, hit until she wore herself out, bite, roll around on the floor kicking and screaming for help, getting into anything she knew you didn't want her in and then she would say I thought you wanted me to do whatever ....... she melts down every time I take her to a doctor because she wants to go to the hospital. Two doctors have called an ambulance during a regular visit because she goes into these episodes, so now she tries it every time. Last time a dr called an ambulance the hospital er basically told me they wouldn't admit her for psychiatric dementia symptoms anymore. They give her a shot to calm her down and send her home. No one will prescribe meds to keep her calm at home. There's no money for a home, and my brother basically gave the job to me. He only wants to visit occasionally. I had a terrible childhood, she was mean before and she's mean now. I get so sick of people acting like everyone is taking care of a national treasure. Bad people get dementia and need caregivers too. It's horrible.

I am doing everything in my power for my husband and myself not to do this. I have a self centered selfish brother in law doing everyone can to circumvent the true necessary professional care my in laws need. Not going there !

A situation occurred last week where I just let fly at my father, who despite having increasing memory loss, has not forgotten however how to stop complaining. Without going on about the latest complaint, I just lost my patience and told him to stop bloody whingeing about everything, that he has been a compulsive complainer his whole life. To which he replied that he's not whingeing he's just commenting and that I was the one who was whingeing and that I'm going around the bend and had i ever really loved him?
Also he asked if I treated my husband this way, and turned the whole thing around on me like he always does. He can't stand to be critised or be in the wrong. So he's not as senile as he makes out. He just bungs on dizzy spells when he's called on his bs.

I hated being a caregiver to my mom for these reasons:
-EXCEPTION: Mom was her sweet, kind self. We got along wonderfully.
- I was away from my quiet mountain home, which I loved and was in another state.
- Mom's town was the town I grew up in and I never liked it.
- Her neighborhood was a crowded bad neighborhood, tight with old, decrepit houses with a brick road that reverberated the vibration and noise. The noise at all hours (plus Mom's nocturnal activities) left me severally sleep deprived.
- Her house was old (my sister then me kept the place up to look sharp), which took an additional toll on me to keep it that way. I could hear the neighbors screaming at their kids through the single-pane glass.
- When I arrived for the long-term care to spell my sisters from caring for Mom, they pretty much abandoned me. If they did take Mom to their home so I could finally a day off, they'd bring her back well before the hoped-for time off because of her demanding to return and drop her off and leave.
- The cruelty of my sisters took a very serious toll that I still haven't been able to put aside these past three years though I cut off all contact. So caring for my Mom eventually caused me to lose my entire family. (Except for Mom's passing, I'm good with that.)
- The financial strain was enormous because of paying my home's bills (which was broken into while it was empty) and the new bills I had while at Mom's house.

When I arrived home after Mom had passed and we sold her home, I was in such bad shape I could only trudge. It took two weeks before I could walk my two dogs further than a quarter mile--and even then that "further" was only an extra hundred feet. PTSD sent me to the doc.

But, I was fortunate that Mom and I got along very well. While I'm not sure she ever remembered me, that didn't bother me because I knew it was the dementia. She maintained her basic nice personality. I am very grateful we were kind to each other.

Sylvia Please don't beat yourself up messing up with your mouth. I'm totally on your side. I'm sure you love your husband deeply but hate what he's become through dementia. I'm afraid that I can't advise you to act any way without sounding judgemental or scolding you. I'm guilty also of blurting out in anger at my father( We're both hot heads) who I'm caring for in my husband and my house. He moved in 5 months ago and its been a rough ride so far. Thing is we've always got on pretty well despite our natures. He's always been a good dad although a bit controlling and overprotective. Now he's changed and he's old (86), so I try to make allowances. He's always been very independent, and now he's had to relinquish all that as he has bad memory, hearing loss and mild cognitive impairment. No caregiver's life was ever going to be a picnic.
I can't think of anyone who is having, or has had an easy time caring for a loved one. I hope we can both continue to be brave in this journey. I wish you the very best.

Right now I absolutely hate it. Trying to work from home full time and be a carer even with in home care visits is impossible. The world revolves around my grandad as far as he’s concerned and he’s treating me like a skivvy while being nice as pie to the carers. I’m pretty much done with the current situation - I’m going to have to put my own physical and mental health first whatever the consequences. I’ve given as much as I can and it’s now making me ill. Enough is enough and my conscience is clear - time for me to move out and for others to start taking on some of the work. It’s the same old tired story where the rest of the family leave it all to me. While grandad was working with me we muddled along ok but now I get zero respect, arguing and insisting on doing things in ways that put him at risk. Whether I’m actually brave enough to step away remains to be seen!