Be honest, how many hate being a caregiver?

i am so sorry for you. I take care of my 87 and 89 year old parents. It’s extremely exhausting emotionally and physically. I do not have any help. It’s just me I don’t want to do this anymore. I just want to be their daughter not their care giver. I’m trapped. It’s taken a huge toll on my marriage and my life. I love them both dearly but it’s tearing apart my life. I don’t know what to do. I understand what you’re going thru but sadly I have no answers 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

A benefit to being a caregiver is that it fixes in your mind you don't want to end up being the one cared for.

My eyes fell on this book on my bookshelf the other day: The Better End -- Surviving (and Dying) on Your Own Terms in Today's Modern Medical World by Dan Morhaim (adjunct professor in the Dept. of Health Policy and Management at Johns Hopkins).

I took it off the shelf and started reading it. If I haven't been seeing first hand (my wife and SIL are caregivers) the awful demise of my MIL with end stage dementia the book might have sat there until it was too late to do any advance planning.

Got the prayer.

LORD Jesus - SylviaT is having difficulty with the job of caregiving. She is tired and needs rest. Her husband is very different from the person he was when they married. She needs to see glimpses of the man he used to be. She is frustrated. Help her to have Your perspective on her situation. Bring her willing family members, good friends, members of the family of faith, and paid help to come along side of her and her husband and to help. Help SylviaT to get good sleep every night, good meals at a reasonable pace every day, "time off" to care for her own health, and "time off" to enjoy the life You gave her. Help her to only say words that are helpful to others as You fill her heart with Your love. In Christ Jesus' name. AMEN

SylviaT - now walk in the knowledge that God sees you, hears our prayers and provides all that you need in the life you now live. Do what you need to regain your perspective and some balance in your life. Hugs!

I too am angry and frustrated. We were both working spouses with our own interests. Now 24/7 and very difficult. Husband had a hip replaced and is a fall risk, so I have to get up with him all the time .when sun downing starts it’s up every 5 minutes. He has no memory of surgery or falls. I pray every day for Gods gifts so I can help him.

There were days that I hated the position I was put in, taking care of my mom, when she had Alzheimer's, but then I adjusted my thinking from I "have" to take care of my mom, to I "get" to take care of my mom. That change in perspective made a big difference. Of course, I resented taking care of a sometimes ungrateful stranger, the ungrateful part taking precedence over the stranger part, (stranger in more ways that one, as in a stranger have behavior that was becoming stranger by the day). I even wrote a book about our travails dealing with this called, "My Mother Has Alzheimer's and My Dog has Tapeworms: A Caregiver's Tale." I tried to write it with humor and heart, because, as you know, you need both, especially when dealing with this disease. I knew that my mom's sometimes irrational behavior was due to the disease, not her choosing.

To be very honest it was the hardest thing I ever had to do. To watch your mother who was a strong, healthy women get dementia. Laying in a bed for months was to much to watch. It is mentally and physically VERY difficult. I help the elderly on a daily basis and it is extremely sad. Many do NOT even have their family that helps them. I wish I could do more for them. BUT, I can`t I have back and neck issues myself. There are days when it is so difficult to watch them struggle.. Being a caregiver can drain the life out of you.. BUT they need us. So we do it. ..We definitely need better places, stricter rules in taking care of our elderly!!!!

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.

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.💕

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.

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

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.

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

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.

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.

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 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.

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

Everyday I wish I had my old life back!!

Therapy helps a lot!!

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

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.

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.

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 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.

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 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.

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.

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 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.

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!

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