Be honest, how many hate being a caregiver?

These feelings are real and not wrong. I think it's important to allow yourself to say it. To feel heard and not be judged. I recommend if you can a therapist or support group.
I felt overwhelmed with my mother's care. It wasn't hate as much as I just wanted to run away from home, the responsibility was so daunting. And I absolutely did hate my sister for not helping. I definitely had my moments of being less than patient, but mostly with my own family and not with my mom.
I lost my mom almost a year ago and can honestly say I am so glad I did care for her. I wasn't perfect but I tried my best and I know my mother was grateful and forgave my imperfections. I miss her more than words can say, but am glad I did what I did. The weirdest thing is I even miss the hard days. Not everyone feels that way though. It was incredibly difficult to care for her. I knew that at the time but looking back, I wonder how I did it at all.
My sister (same one I hated, but still love!) once told me feelings are just feelings - not good or bad or worthy or not. You just have to honor the honest feeling and go from there.
Hang in there. Get some help or a break if you can and give yourself some grace.

I am drained as a caregiver for my mom. It has now affected my own health. I know her dementia is the atrophy of her brain, but it can be so frustrating when you want the person to understand what you are talking about and for them to quit being so impatient or saying things that shouldn't be said. I totally understand where you are coming from. My faith and prayers are what has sustained me through this whole ordeal. Please know you are not alone! None of us caregivers are alone! We just feel like it sometimes! Grace and peace to you!!

It sounds like a lot of your frustration is with your husband's behavior more than with physical aspects of care taking. Please contact your your local (or the national) Alzheimer's Association to find out about resources and classes for dealing with the dementia-related behaviors. The diagnosis need not be specifically Alzheimer's. The "training" classes are online; advice and techniques and input from other caretakers is immensely helpful and applies to all kinds of Dementia.

Hi Sylvia,

I care for my husband to and yes, sadly hate it. Lets be honest. It's like it was also me what you said. Nothing wrong with my husbands mind either, however he still acts more like a baby instead of a man and I get so frustrated. I get mad at him because I feel he doesn't care about my happiness. It has always been about him. I have a attitude with him to . I get upset for many reasons, that he doesn't seem to care about talking to me is one, about our life now, and remember, their is nothing mentally wrong with him. It's normal for us to get frustrated . We have to take care of our loved one And take care of everything else in the house to. LIke I read here, get some help at home if you can afford a day or two a week. Take care Sylvia

I don't think there's a person in the world who can say (in honesty) that they love the whole experience of being a caregiver.

When you are the only caregiver and live in the same house as the person you're taking care of, it is in a sense a kind of slavery. You are chained to the situation and your life is not your own anymore. Even the smallest every day things like going to the grocery store have to be planned in advance with arrangements made so you can go for an hour. Then add the total ingratitude of the person you're caring for, which is also very common. The often abusive and negative behavior that the person being cared for develops over time, and the two-cents offered from everyone you know about how you can be doing a better job. Then add the guilt we put on ourselves for feeling resentment. Someone on this forum said that when a caregiver is feeling resentment it is because they're giving too much of themselves. That is the God's honest truth right there.
You are giving too much and it's time for outside help to take over some of the caregiving burden. And it is a burden even if people say otherwise. Let paid caregivers take some of this burden from you.

Just what I needed today....my husband and I had been married 7 yrs before diagnosed with Alzheimer's at age 58. In the beginning I cried and cried not knowing what to expect. I was even grateful that I was here for him and would be his rock. He til this day says he has nothing wrong with him and argues every step of the way when I try to help him. He has never excepted help from people and now it is even worse. To see him he looks fit and people look at me like I am crazy when they visit a few hours and he seems fine. He cannot complete a sentence, his short and most long term memory is gone. His cognitive abilities have been gone for over 4 yrs now. I find a drawer filled with rocks from outside, I find a glass of tea in the cabinet and he gets mad if it is moved. I love him dearly and want him to be happy. I find I have to live in a way that I do not like...everything in our house gets moved around. I cannot make a change without a scene. We used to go and do all of the time and now I cannot even go. Family is not really any help and couple really do not want to spend time with people they have nothing in common with anymore. Sorry I am just ranting. I have an insurance business I have to give up this next year because it is practically impossible to do the work that needs to be done. I love my work and that has kept me sane...not sure what is next. I really do hate being a caregiver now after 7 yrs but not sure about what comes next...thanks for listening

There's good advise listed below. This is my passion as well. Caregiving is difficult and is not for everyone and becomes even harder when you are caring for family or friends. At some point, you take it personal, even when you know you shouldn't.

I wish I could give you a sure fire thing to do to make all of your anger and pain go away.

I will ask you to follow the techniques listed below:

1. Don't kill yourself with guilt.
2. Create personal time for yourself even if its just 5 minutes. Set goals and build on your time. Care giver burnout is real and the effects on you spirit and physical body are real. You need the time for yourself.
3. Find a friend or a family to share your thoughts. This person needs to be your cheerleader. This friend needs to be a good lister and reminds you of your love, your strength and your reasons to continue to give. This person can not allow you to focus too long on the negative. You can create your own pity party, you need someone who will create an uplifting party.

The one thing I would ask you to do, is when you see someone struggling with care be a helpful voice, even if its just lending an ear and a shoulder to cry on.

The Aging of America is here, we are all living longer with more. In addition, COVID-19 has proven people would rather be home vs facilities. When the time comes for voting or pushing issues to the forefront bring this issue up. "How do we care for our loved ones at home? What can private pay, Medicare or Medicaid do to support Caregivers?"

I don't have the answers. I suspect no one has all the answers on this issue but its a real issue and its effecting every day people.

Stay Strong take a few minutes for yourself

and

Stay Inspired,
Shonda

For a minute, I thought that I wrote this, Sylvia. My husband was diagnosed with dementia 4 (very long) years ago. Since then, my memory has provided clues that it’s been going on years longer. I did a free online course through Emory University so I would understand the disease and how to care for him. After his yelling (and me walking away) I finally got respite care two afternoons a week, and on Thursday he’s moving to an assisted care facility. (Thank You, Jesus!) He’s not happy, but he will be when those young ladies start fussing over him.

I realize you don’t think you can get respite help, but please try! If you own your home, there’s money in equity. (You could start getting it back now.) If you rent and have little money, Medicaid can help. The senior care agency in your area may be able to help. AARP may help. Could you sell some unwanted things or get a part-time job that pays as much or more than you’d pay someone to relieve you? If your husband’s social security is much more than yours, you can receive more money now. (Contact the Social Security agency near you.) Ask a Pastor at your church for names of volunteers who may be willing to help. Ask a nice neighbor or friend.

Discussing and reasoning don’t work with someone with Alzheimer’s/dementia. Only prayer really works, and the answers may come from unexpected places. Be open to new ideas! They may be answers from God!

I’m crying now with you and praying for you.

Please get help while you’re still able to ask for it!

I never regretted a day of being a caregiver to my father & his dog. For me it was a 2 year stint for both. Mom had passed away almost 5 years prior to the day. It was surreal, like they both declined at the same time to be with each other to their end of life. Just hang in there is the only advice I have.

your thinking more about yourself, instead of your husbands needs, you dont think he wants to be the way he is and having you wait on him,,, im sure he doesnt so make it easier for him not harder, by considering his needs and not yours.. ive helped my husband alot phiscially and mentaily,,, believe me it works,,, God has made me stronger phiscially and mentaily ,,,, I put it all in Gods Hands, and He sends me the strengh ,,,try talking to God,,, and he will answer..
Jenny Uhl

I can't imagine that anyone likes the job. The worst part is not so much the actual care, it's more about watching your person deteriorate before your eyes - not able to do things today that they did yesterday, etc. If you can afford any kind of help, get it. All of us have frustration/feelings of anger throughout the day and from time to time it pops through. What you feel is normal as far as what 'normal' even is during the caregiving days. Wish there was a magic pill to tie the tongue, but it just happens to be something all of us work on every day, all day long.

I truly understand and I am sure many feel the same way. This is the hardest thing to do. It has nothing to do with loving him, wanting what I’d best for him. It is your self preservation kicking in. I am sure all of this is making you feel guilty about how you feel. However remember you are not the only one who feels this way. You are run down, your life is on hold, and your husband is also going through difficult times. Just remember this too will pass. Do your best because it is all you can do. Always remember the good times you had together and forgive yourself for feeling the way you feel right now. It has nothing to do with how much you love him - it is just a very difficult time for both of you. I know - I am walking in your footsteps. All we can do is our best that we can.

SylviaT

I don't hate it but I understand your feelings . I feel trapped, tired and frustrated almost every day.
Can't do anything without having an ear out , can't get lost in a book or movie , can't take a nap when I want or even sleep through the night. Any free time is spent meal planning , cooking , organizing medication , or changing beds , washing , mopping etc.
My grandmother has no time awareness and I don't know if you have experienced this but having someone demand a full meal at 3 am when you'd rather be asleep , well...it isn't cute .
It's a rough road as you know but what can we do ? I will pray for you as I do for all of us and hope that God will grant you superhuman patience and strength because too often , that's what's needed .
Don't beat yourself up , self awareness of the issue is the first step . So maybe you can count to five before you respond or imagine what your life would be like if the roles were reversed . What would you want for yourself? How would you want him to treat you ? Start there .

Best of luck to you and to us all.

L

I understand. I reached a point where I just couldn’t do it anymore. Husband with dementia went into the hospital with pneumonia (he kept falling & couldn’t explain what was wrong; he had no other symptoms), then rehab during the pandemic, so I couldn’t see him. Brought him home for ONE WEEK & nearly lost my job. That was the final straw. Got him into a local group home that sucked (they used the pandemic as an excuse to neglect him & keep me from seeing what was going on; I befriended one of the visiting physical therapists who told me to get him out of there; also, the home let him catch the virus, then wanted more money for his care because he could no longer walk). I finally found a better group home that takes every cent of his pension, but it is worth it to have my life back! I can now go to see him & have compassion instead of resentment, frustration & anger. I was single until my 40s for a reason: I am just not cut out to be a caregiver.

Dear Sylvia, I know what you're going through. I no longer care for my husband....just someone who looks like him. My husband has Parkinson's psychosis. He is paranoid, accusatory, argumentative and hallucinates every day. I lose my temper, then feel awful afterwards. This is the only place we are safe to say we hate it!! If I would dare complain to family members (who never offer any help) I'd be persecuted!! When I express that I really could use a break, they just ignore me. My husband refuses to allow strangers in the house, so arranging for respite care is out of the question. Like you, I love this person who used to be my husband, and I truly want to honor my vow of "'til death do us part", but this is the hardest thing I've ever had to deal with. I have no answers for you, but I definitely will pray that God gives you, and all of us caregivers, the strength that we need to get through this!

I am my mom’s full time caregiver by force. I only get a break once a month by my sister, who cannot care for my mom any longer , because of my mom’s paranoia and false accusations towards family members. I quit my job to take care of her. I try and take one day at a time and I pray alot. I am depressed and have lots of anxiety. There are not any other options as of now.

If people were honest, if they have done it for a while, most would I suspect say they hate it. It is something that seeps into every aspect of every day, and if one is doing it solo....In all honesty, I am glad to be and do for my parents, and most of the time accept that my only sibling made her decision to move out of state. But she feels no obligation to assist, and when I became critically ill, while she made an obligatory appearance for less than a week or so, she said she didn't know how I deal with it; went back to where she came from and then had the balls to accuse me of being responsible for my own illness. I should not have been surprised. Initially I did not want my father to feel guilty/responsible for what happened, but the truth is he is clueless about his demands and the pressure that is both put upon me and that I put on myself wanting to do good. In addition I am working remotely. I have reached my limit and have begun to make it clear, in notes (he is deaf) that I am not his wife. He's perfectly capable of doing somethings on his own.

Caregiving is very hard and it's very stressful; each year worse than the previous.

I'm responsible for 2 women. My Mom and my Aunt.

Everyday I wish I had my old life back!!

Therapy helps a lot!!

My mom is 87 and my dad has been dead 21 years. Since I am male and taking care of my mom, 87 I hate being treated like a “default husband”. But what I hate most of all is that my mom has trapped me in this role.

I understand your feelings. My caregiving days are in the past but I will admit that I did hate being a caregiver. I look back on it sometimes and wonder how I made it through.
Take good care of yourself as best you can. I joined a support group. Enlist the help of a friend so you can get away even if it is for just an hour. Try to find humor where you can.

Thinking of you and sending calming thoughts.

I just said a prayer for you. Also as one who took care of my husband as he died from an inoperable brain tumor and also my dad as he was in the final stages of dementia, I learned I had to reach out for help. Respite care, counseling, GriefShare all were a tremendous help to get through it. We often don’t understand how our anger is all mixed up with anxiety, exhaustion and emotions we can’t define. Getting some help from a professional can truly be a godsend to help us cope. Also some times of respite for you to refresh your soul. Praying for you 🙏

I wrote a very angry post here yesterday about a huge argument I had with my mother, who is often hurtful and verbally abusive to me, and me only. I have exasperating daily struggles with getting her drink her water and eat enough good food for health. I do have compassion fatigue because I get negative or no feedback for all I do, which is pretty much everything.

The irony here is that I have been trained and worked in direct care. I loved it. But the difference is, in a care facility, if the patient doesn't want to do anything, he or she doesn't have to. When my mother refused physical therapy in the hospital, no one made her do it. She ordered nurses around, complained, etc. They had the ability to just move on to the next patient. They also got to leave when their shift was over. I have taken care of people so compromised by dementia/alzheimer's they had to be spoon-fed. And then there are people experiencing severe memory issues or hallucinations. I feel compassion for those folks. But the difference is: none of those people never personally attacked me, or said cruel things. Most of those patients appreciateted the care that was provided and showed at least a modicum of respect for the care staff.

I don't expect perfection. I expect effort. I expect the courtesy that one would give a stranger on the street. I get none of this. And I am her daughter.

Im the only one left. My son,my brother,my mother are all dead. My father is now in the hospital and it's such a relief. The stress of trying to care for him physically,mentally,emotionally has aged me. I'm already disabled and all my doctors keep telling me I must take care of myself. Im just worn out. There's so much to do. I'm so tired. I don't want him back here with me. His dementia is too hard for me. He's turning into a toddler. He can't help it. At least with a child they will learn. But he's unraveling. He screwed up his money, wired money to India for software, showed the scammers hundreds of dollars remotely on his computer, conned into buying another laptop by shady repair guy, he verbally agreed to hearing aids through the mail and he doesn't have a hearing problem it's cognitive, he bought over $600 worth of porn on cable TV, he's got porn of teenagers with braces on his cellphone. Ugh what a mess. Nonetheless, I terminated the phone, cable, and now have POA. What I've learned since he called me for help 4 years ago, is quickly step in legally before the buzzards who prey on the elderly don't wipe out their savings. Dad forgot about a life insurance policy he had for mom. I found it in a shoe box in the closet. He let it lapse. I'm finding more. He bought mom a $21,000 diamond ring all certified. I took it back to the Jewelers, they wanted that and some smaller stuff of moms for $13,000. Needless to say I said no. Well thanks for listening to me. There's more but I need coffee.

It's a lot of work. It's hard. It's frustrating. It's not usually appreciated. Not much to love about it.

I had to take care of my husband, who passed 6 years ago, and now I'm there for my almost 90 year old mother. Yes, it can be very hard. See if you can, through his insurance, get visiting nurse care a couple of times a week, also, depending on his condition and insurance, see if there are support services there for you. You need help. Please inquire about any available support for you.

You are not alone, I am taking care of my 86 yo mom who just recently dived into end stage dementia/ALZ. We have been trying since Feburary 2020 to get her admitted to a facility, but the pandemic has made that all but impossible. Lately the entire family has been dealing with the emotional toll. This isn't my mother. I love my mother, but this woman is a stranger. Not only is the woman who raised me gone, even her face looks different. We are trying to get her meds regulated, but too much and she can't walk on her own; not enough and she becomes nasty, acusatory and even physically aggressive. She's screamed at us (as strangers) to get out of "her house" (it's ours, she's never owned it). We've had to call the police and paramedics and even had her taken to the ER, but there's nothing they can do since dementia is a chronic condition not a mental illness. The things she's accused some family members of is disturbing and wholly untrue. When she is cognitive, it's wonderful having my mom back (well back to her normal with dementia). When she's anxious or angry, it's untenable. This experience has made me more impatient and quick to anger, rather than the other way around. I'm stressed all the time... I feel like a warden who is trapped in their own jail. She'd decided lately that she hates my husband, who does so much for her and doesn't deserved her outbursts.... Sorry, not meaning to hijack your thread, just venting some, too.

You are not alone. That needs repeating. I'm looking in the mirror while saying this, but you need help. See if there's a group you can join just to talk with and maybe find a therapist, try AARP or your local health dept. <3

My situation is very different. I am new to being a caregiver for a family member. I worked for a community mental health provider 30 years ago while I was going to school. One of my positions during my time working there involved living with a young man with developmental disabilities. It was an extremely challenging job. The man had his own apartment due to his volatile anger. Deinstitutionalization was new at the time and the agency was trying to figure out how to handle the situation. They decided to throw a young, untrained, college student in need of housing into the position of a live-in caregiver. Recently, my mother suddenly digressed into what we think is dementia. She was living independently. I moved her in with me thinking I'd provide a lovely skip into the sunset type of care. I h ad no idea that the woman I loved would quickly not know who I was and would become demanding of the "staff". I also have no help. I can't take her anywhere in fear of COVID. It is winter so we are stuck in the house. She wakes me up several times a night. I soon found myself sleep deprived and frustrated to the point of anger. We had a yelling match. I fell into depression. I knew I had to make the situation work because I was the only one able to keep her out of a nursing home. I put some specific activities into my life to pull myself together (exercise, nutrition, eliminating other stressors). One thing I did was hard but it helped. I began to view my situation with my mother as I did when I worked in mental health. I wouldn't yell at a client. I'd vent to a neutral party. It sounds cold, but it actually allowed me to provide more loving care. It didn't take away the difficulty and frustration. I go into my room and sob, and I feel as if my life is on hold. I've lost my job and finances are creating more stress. However, I don't let my mom see that and I am able to be less grouchy when assisting her. I'm miserable. I don't know what I'm doing. I know this may not help your situation at all, but I wanted to share it just in case you can use any part of it. It won't take the pain away, but maybe could help with your interaction with your husband. I get it. The anger is due to the situation not the loved one, and I feel horrible when I am cold or angry toward my mom. That creates a cycle of building stress which I take out on myself more than my mom. I only hope it wasn't offensive. I'll keep you and your husband in my thoughts and prayers as I navigate my journey with my mom. Thank you for sharing. I'm new to the site and this is my first entry. You helped me to see I'm not a bad person for feeling angry. I'm a normal guy in a difficult situation who needs to learn to reach out.

I hate it! Nobody asked me if I wanted to care for my 81-year old mother with Alzheimer’s when my father passed away last fall. I’m the only child so I inherited her and their cat. No other family members volunteered so a week after the funeral we had to get our place ready and transport her 520 miles down to our home. I was, and still am, grieving my father’s passing which she can’t remember from one minute to the next. I am no longer the overly nurturing type at my age but I know she will never get the care in a NH that she gets from my husband and me. I’ve come to terms with that though. Nobody should have to do this unless they want to, and even then, they should think really hard about it. Think about where you are in your life. Are you still working, like I am, or are you retired? That’s a huge bullet point. Think of what disabilities you can and can’t deal with. I have no problem helping her with her showers, doing her laundry, cooking for her, etc. but by the time fecal incontinence kicks in I’m hoping we have her placed. Only you know your limitations. Nobody has the right to judge you. I’m in the time of my life where I want to spend time with my husband who has a heart condition. We deserve time together just the two of us. And now this. It’s been a wake up call for me because I will not put my children through this. I’ve already purchased long term care insurance so they won’t have to. And these seniors we take care of can get mean, non-compliant and treat our spouses nastily too. They aren’t all the sweet elderly folks we read about in fairy tales. If that was true it would take a lot of the edge off. Unfortunately all that does is reduce the guilt of eventually placing them with people who get paid to deal with that on a daily basis. God bless those caregivers. And God bless you as well.💕

I love my mom to the moon, we were always more like sisters rather than mom and daughter.

This horrendous disease, Lewy Body, causes such heartache. It’s like Satan has brought this into our lives.

I get so upset when mom calls 800 numbers and keeps changing her medical insurance that interferes with her care. Then it takes me a week of numerous, difficult calls to fix the mess. Not only has she done this to herself and repeatedly does this, but also has done to me, changed my city coverage through my husbands union! This is all done due to tv commercials that mom finds appealing at that moment. Yesterday, it happened again, not only with insurances, but the ASPCA, where mom decided she wanted to donate her diapers. ❤️ Very loving and kind, but I paid a lot for those various pads, liners, diapers, etc. out of my own, disabled, pocket money.

I get angry and yell and I feel so broken afterward. It’s just so overwhelming and it breaks you. All of the worry, taking knobs of oven, removing the toaster , all because I truly don’t want to burn to death in my sleep. I pray for forgiveness because it not moms fault. It’s the disease, that horrible disease.

last night, when I got my mom into standing position, I gave her a huge hug. I tell her all the time I love her. Sadly, most of the time she thinks I’m someone else. Though, no one else’s faces confuse her, just mine.

though I love my mom to the moon, I recently had to make the most horrible decision in my life, assisted living. I can’t do it any longer. If I’m yelling at my own mom, what have I become. I’ve become a monster. I love her way too much, she doesn’t deserve this. This yelling, happens when I’m afraid for her and it comes out and I’m ashamed of how I respond at times. I ask our Heavenly Father for forgiveness, as well as my moms. I always apologize and truly mean how very sorry I was for getting so upset with her and try to tell her how very concerned I am about her and she has no clue to why I was so upset to begin with.

I truly have learned to trust God more. I do the best I can and when I can’t keep up, I slow down. Take an hour listening to my soft Christian music in bed, which slows my heart rate to a safe zone. It truly calms my heart and mind.

you can only do so much. I can only do so much. Even our sick loved ones can only do so much, although sometimes we may forget this. All we can do is try to do our best and trust God more. When we get to that point that we say that we truly hate caregiving, I think it’s time for us to get some kind of help. I too, always said that I’d never ever put anyone I loved in a home of any sort, but sometimes, it’s necessary. I want what’s best for mom, is she truly happy hear? Or would she be happier with other ladies, friends to talk to, Music and activities, now that COVID is allowing various activities and visitors, nice meals to fit her diabetes. My mom is agreeing to this change. I think mom will enjoy it. I’ll be visiting quite frequent, probably daily, always making sure she’s ok.

just because we have to make such decisions for someone we love so much, it doesn't make us bad people. How can we possibly care for others when we don’t care for ourselves? When mom goes into assisted living, we will have more quality time together, less stress and more love. We can enjoy every moment we do spend together, without all the exhaustion and resentment.

I’ll always love my mom, I don’t hate caretaking, it’s just that it’s consuming me... inside and out, to a point that I’m not myself anymore. My mom wouldn’t want this for me, she loves me way too much, as I love her.

keeping you in my thoughts and prayers, please forgive my long winded message. I have so much on my mind lately, as all of us do here, it truly feels wonderful to vent a bit. Something I’ve been doing a lot lately at aging care. I’m so greatful To have found this place.

stay safe & well.