Be honest, how many hate being a caregiver?

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.

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

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.

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.

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......!

I think at some point in time all of us don't like being a caregiver, we would rather be their "daughter, son, husband, wife or whatever", something that we all knew before the caregiving task. I also ask for patience some days. I don't have near the amount of caregiving as some do on this site, but even when I am having a bad day it comes across to my family member. Wishing you luck and patience.

I hate watching my mom's condition deteriorate. It makes me very angry. I talk to God about it a lot.
I pray that God, our Father and Creator will care for you and your husband and give you the strength to deal with your trials. I pray that Jesus, His Son, our Savior will be a constant and compassionate presence at your side. I pray the the Holy Spirit will give you wisdom, counsel, fortitude and knowledge, and help you grow in love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.

Tbh, caregiving is many times difficult, often unpleasant and quite wearing on the body AND the soul. If a caregiver doesn't seek respite when they can, they will FAIL. No one caregiver is a SUPERSTAR. If they thought that they were, they most certainly will find it a difficult road.

I have started hating it myself!! I'm with you on losing my patience. The pandemic hasn't helped. I am caring for my dad, but I imagine taking care of your husband is much harder.... We kinda expect our parents to need help eventually. Some days I get 'snappy' with him. He's a very mild mannered, sweet 93 year old, so afterward I get upset with myself.
It's just that sometimes I just want to scream!!
I hope you can find the strngth to get through this tough time...maybe once everything opens again, you can get someone to give you a few hours to yourself

You don't have to like anything...chose not to hate anything...it is a sickness of the soul.
Consider getting in some part time help
And taking better care of yourself
Dr Christophers herbal Relax Eze caps are really helping me. Inexpensive & available on Amazon. Plus pushing in half a gallon of distilled water, and going for a 30 for 40 min walk each day. Healthier body, healthier mind, more emotional stability (most times :)
One day your husband will be on the other side
Your loyalty & love for each other will be what you remember, not the stupid things you/he said under difficult circumstances
Take good care of yourself.
A big warm hug and positive thoughts to you

I have to be honest also, I truly hate being a caregiver also. But I was trained to be one when I lived away from my family. I hated it then and I still hate it now. I know what the end result will be. DEATH.! I continue to flourish because of the thought that I am helping to give a human who has literally lost their being as to who they use to be. Most of them are in a second child hood and have to taken cared for. Yes it is hard, but I get satisfaction knowing that I am doing my best to make there life comfortable as I can. I know that it never said that living will always be perfect and I am now seeing just what the old saying goes, you get what you sow. I have had to hold my tongue long enough on more days now than when I first started 9 years ago. Some would say that as a child most grownups have been used to doing things there way and will always try to resort back to this way of life. They do not realize that in most cases they do hurt those they love. I have to tell myself this a lot and PRAY to JESUS, GOD, HOLY GHOST SPIRIT, HOLY MOTHER MARY , AND ALL HEAVEN to give me the strength to continue on until that day when it will all be over. I also PRAY that I will be a better person when I get past 90 years old. So I say this to say that patience is a virtue and I am PRAYING EVERY DAY FOR THOSE MORE POWERFUL THAN I TO HELP ME. I hope that this is helpful and I hope that you can see the light at the end of the tunnel. It will be a glorious day when it is all over.

I'm raising my hand. I feel trapped and don't know how to get out of the situation. If it were a job, I would have quite a long time ago.

Honestly, to nearly anyone who lives a busy life, more so in America, we all despise caregiving. Our reasons for becoming a caregiver differ. Some old parents don't have enough saved up to hire a full-time caregiver. We take on this burden because we have to, not because we want to. Healthcare in America is the worst of any developed country, and yet they cause this issue of people outliving their usual years. What have they proposed to take the burden off of the younger generation caring for the older generation? A shut up and do it because they raised you mentality. They never cared for their elderly parents who were too old to do anything, because their parents died younger than 90-100 years old. This caregiving is a new problem that the younger generation faces and some of us are even 60+ years old when our parents expect us to care for them. We have jobs, we have duties to fulfill, and yet we are burdened by our parents. Some of us just want to retire already and enjoy what little life we have left. Maybe they spent a lot, maybe they didn't have a lot or maybe they had too many kids. When it comes to the final one, you all need to chip in to help care for your parents in any way you can. Sometimes this is nearly impossible, but it really is your duty to help if you can. The bottom line is, if they can afford care, then for God's sake let them pay for it. Sure, it takes some out of your inheritance, but it takes it out of EVERYONE'S inheritance. What this does is give your brothers and sisters a reason to chip in. If they can't, then money has to be spent on caregiving.

Countries like China are way ahead of America. They have a better healthcare system, they pay for you to care for your elderly parents, and it's expected that you do so. In America, you are expected to care for your elderly parents with no incentive whatsoever. The cost falls on your time on this planet, and you really have to love them to sacrifice something that they never had to sacrifice when they were younger. I expect later generations to be more grateful since we know what it's like to be a caregiver. Unfortunately, we're the first generation to have to do such a thing, so our parents and such can come off as ungrateful. It's a very complicated and debated situation.

After all of the wonderful and wise suggestions from those of us that are walking a similar path, one thing I can add is "Thank God there is this website to go to. One of the best things I have gotten from this website is the knowledge that I am not alone!" And as a Christian "I know I do not walk this path alone!" Both points are valuable. God bless you and your husband.

Is there anyway you can get a brief time away from the caregiving? Are there other family members who could relieve you for a few days, or even a few hours periodically? If not, are you financially able to hire temporary caregivers to allow you to recharge?

Sylvia,

I will pray for you to find guidance in the care of your husband. I also hope that you get support for what you are going through. You can contact your health care provider to have a virtual or phone call to provide help that you need at this time. I suggest you make it a point to call asap so that help can be given to you. Love has many challenges and you are facing a big one right now. God bless you and your husband.

I admit it I was short with my father from time to time and I wasn't even his full time care giver. He could be difficult and he hated to be helped. I get task oriented and forgot what I was doing with him was a task but he was not the task though I think I may have treated him that way. I hope from heaven he knows I'm sorry I was short with him and that he was more than a task to be taken care of. Because of COVID my mother and I have had to settle for phone calls and window visits. No more taking her to DR appts, shopping out to lunch. My caregiving is from a distance with bill paying, ordering her few groceries for snacks and such.

I have more of an attitude time with my spouse (who isn't in care) who complains about my attitude and mouth, but having lived with him for more than 25 yrs is it my reflecting his attitude and mouth towards me. I know that isn't a good reason and I hate when it gets to that point and constantly ask forgiveness. I pray to God to give me patience, but I'm afraid I'm asking multiple times a week.

I imagine you are tired. You don't say how long you've cared for your husband. It sounds as if you need a break to recharge your batteries. Is there children or other family that can give you a break. Can you afford to hire someone a couple times a week so you can run errands, take a walk, soak in the tub, just sit quietly for a while and escape into a book.

We all have our shortcomings, my prayers go out to each an everyone of you and I ask for yours.

Same here I hate taking care of my mother she is unable to do anything, this woman who I care for stole my mother’s body her mind ( she doesn’t know who I am or anyone else). We are good friends she says.
she has been this way for 4 years now, but living under my roof 30 years. But I am now grateful she is unable to stand or walk because before this I had to constantly watch her so she wouldn’t fall, and if I had an errand I had to bring her everyplace I had to go. So I landed up canceling my appointments till my husband could be home. Now she stays in her recliner and knows and doesn’t try to get up. But every morning I hate getting out of bed because I have to take her out of bed change her diaper dress her feed her, to someone who doesn’t know where she is and wants to go home to her mother!

Sylvia,

I truly applaud your honesty. Do not force yourself to do something that you hate. That doesn’t help in any way, shape or form. It will only magnify the agony for you and your husband.

Everyone has a unique experience, therefore no one has fully walked in your shoes.

We may experience something similar but it certainly is not a mirror image.

You are entitled to your feelings about your life.

You don’t even owe anyone an explanation as to why you feel like you do, nor do you owe anyone any form of an apology for your feelings.

I was a caregiver to my mom with Parkinson’s disease for 20 years! 15 years were in my home. Let me say that it absolutely becomes a huge burden and it changes family dynamics in every way, and not in a positive way.

I could scream when I hear, “What doesn’t kill us will make us stronger.” PLEASE! Very often it breaks us, and although when all is said and done, we can and do heal, we never forget the misery.

Take care, dear lady. I wish you peace and joy now and when your caregiver journey ends.

Dear SylviaT, I am praying for you as so many others are, too. Sometimes, all of us are not living a day at a time, but one second at a time. Remember to give yourself grace. 🙏

Clearly not everyone is meant to be a caregiver. However we saw to the best of our ability that my mother and mother in law got decent care from someone.
It takes certain qualities and understanding to be a caregiver. My mother was a great business woman but caregiver -not so much, so she did not expect us to drop everything and take care of her personally. My wife freely admits she could not do that on a daily basis even though she is a medical professional. We were
fortunate to have people and relatives who were willing to take their time to help with the extra work required. My mother and mother in law were not ill with any disease, just frail and needed help to do the routine duties of living. There might be the ocassional forgetfulness or confusion; but not a lot. My point is "do not feel bad that you are not wired to handle that kind of committment".

Sylvia, you have my love, support, understanding, and certainly my prayers. You are a perfectly normal, healthy human, and your feelings are natural. I heard something the other day that I liked: W.A.I.T. ('why am I talking?') It's actually more to keep myself, my sanity, and my peace of mind safe. And the 'other party' also appreciates it, of course! Having to 'make amends' and apologize (what to say, how to say it, when am I able (if ever) to do so) can get very complicated, and being a caretaker (or just a plain human) is complicated enough!

Get some help. When you hate....that will be present in what you do for your husband and will spread to how you see and treat. You describe yourself not as a caregiver but you are doing what he needs done. A "caregiver mentality" is different. A caregiver does not get into "feelings" that effect doing "care". A "caregiver" does not "hate". They enjoy doing "care" no matter what it is. Do not try to do something you are not. You are doing "chores" your husband needs. It has gotten old and has escallated in you mind to "hate". This can escalate to neglect and abuse. You need to hire a "caregiver" to help you.

I understand & can relate to you in so many ways. I live with the Scripture..."I can do all things through Christ Who strengthens me". I hate what this disease has done to my dear husband & I sometimes feel trapped. God is my strength & help when I need it the most. I have a wonderful girl who will sit with him if I need to have some time off. She is also a RN which gives me peace while I'm away. She is like family & I am so blessed. Thank You, Jesus!! PS, I forgot to mention that my husband is 82 and I am 84. I believe God has us in this place for such a time as this. Amen!!

I hate being a caregiver, too. The only thing that helped was joining the Alzheimer's Dementia Caregiver's FB Support Group. It is a place where caregivers can vent without judgment.

Seeing that there are caregivers with far worse situations than mine, helped me to be more grateful.

If possible, try to get someone else to be his caregiver, so that you can be his wife, again.

I was a caregiver for my beloved mom for 7 years, and took a few courses in home health and CNA. When my mom passed I eventually got a dream estate manager position/caregiver, close to my home. This was for about 4 years and the very wealthy client (who became a friend) passed later part of 2020. I worked with a team of 4 and we lived in the house, because it had seperate quarters for us. There was always 2 people there at all times....Then was caregiver for my aunt and sold her home and my dad. Eventually my aunt moved into a great Catholic facility about an hour away, and I care for my dad.....I am middle aged, single male with a Bachelors degree and then ran my own healthy food cafe. But when it was time for caregiving, it was right time and place. Thanks be to God!

You have my prayers but you need to look into getting a home care for one or two days a week maybe a half day for one or two days. This will give you the chance to go out with your girlfriend's go shopping run errands maybe just spend a day at the park taking a walk or just relax and people watch. Home care will give your husband bath, do laundry, vacuum,fix a meal whatever you need they will do. But the biggest benefit is you will see your attitude go from bad to good. Getting out of the house and do something for yourself will be the best medicine.
Been there, done that. My husband still had his mind but was bedfast with last stages of colon cancer. I had him put in hospital for a week to give me a week of respite I didn't visit but would call him everyday. When n he passed I slept for a week. But I never lost my temper with him. We took vows to be there in sickness and in health. You can not be the best caretaker of you don't take care of yourself.

Well at least you're being real with the situation; first step to dealing with your emotions.
I'm a live in, full time caregiver. Recognizing the person I care for has a mental disease helps a lot. This person would have conducted themselves sooo differently when they were not ill. Even still, my mind is sharp, so dealing with a person who struggles with pretty much every simple task is very taxing on my emotional health. This is when the Biblical saying "Patience is a Virtue" comes in.
Learn your limits and if you're feeling "snarky" or frustrated find a way to walk away. Also; if there is nothing wrong with your husbands mind then he is going to pick up on your emotions. Be honest with him (it's more respectful) and tell him you are walking away because your attitude sucks. You might do this 10x a day or 100 but try and come back with a "fresh start" to each situation. Best Wishes!

Truthfully, I have been on both sides of this issue. When I went into the hospital I had to allow someone else to give care to my wife at great expense. When I got out I was not able to continue giving care and had to watch others provide their 'best'. I pined for the opportunity to get back to my duties feeling sorry for my wife's dilemma. Once I got back to it I was happy to give every effort. Then it happened! My wife became demanding and needy which became more and more difficult each day. She became hateful and hard to please.