How has caregiving changed you?
exhausted long-term caregiver suffering from back pain

How do you know you’re a caregiver? It’s tricky to decide — how many hours? What sorts of tasks? What about the relationship?

My answer is that you’re a caregiver when it’s changed you forever.

So, how has caregiving changed who you are and how you view the world?

Here’s what our community had to say:

I have always been a caretaker by nature. Since my teenage years I was always taking care of or looking after someone rather it be a family member or a friend.

As an adult I have spent 20 years in the health care industry. I started out at a nursing home, a CNA for a couple of year’s, then worked as a medical assistant for a decade+ and currently a caretaker to my husband about 2 years now. I have a very big heart and am an extremely emotional person. The first thing they tell you in health care is not to get attached. That’s easier said than done especially when it’s a loved one.

Caretaking has changed me dramatically. Hate the disease, not the inflicted! That’s also easier said than done. I’ve been with my soulmate and best friend for 8 years now and have been married 4 of those. We had the relationship that little girls dream about. We didn’t have to work at anything. We never said an ugly or cross word to each other for 5 years. For 2 years we was literally together 365-24/7 and loved it, no one could get us apart from each other.

That was until October 2014 when my husband would be diagnosed as an insulin dependent diabetic and then comes Valentine’s day 2015, john had his 1st psychotic break and was diagnosed as a schizophrenic and the life we knew was over. These past two years for me have been the saddest, most painful, loneliest, heartbreaking and the angriest year’s of my life.

After getting over the initial shock of hearing the most hateful things come from my husband came the guilt. I felt like I should have seen the signs, I could have gotten him help early on.

After that anger set in and hasn’t left and now I am starting to feel resentment. Until I found the caregivers space I was all alone with this for two very long years. His family don’t want to deal with him, it’s easier to dismiss and stay away than it is to be there in the face of a brain disease. So they have been absent.

My family has since quit talking to me because I chose to stay and be the wife I feel that God intended and take care of my husband who needed me. I don’t get a break, no normal conversation. I’m not even a wife anymore I am a caretaker. I am to my
breaking point and I don’t know what to do.

I have become this mean and hateful person because of this disease and all that it’s caused with my husband and his behavior’s. Schizophrenia is as ugly as cancer with no cure and no real help.

I think we start out thinking we won’t be changed at all, that this is another of life’s sad, hard times, they pass, we bounce back. That has not been the case with me.

I’m 6 yrs in as a caregiver for my mom with Alzheimer’s disease. She has lived mostly in my home and I’ve been mostly in charge of not only her caregiving, but her business needs that always pop up and have to be addressed. It’s been a big job. I’m also fully in charge of her estate. I will never be in the latter position again, God willing!

I’ve changed in many ways.

I’ve learned that I can handle more than I thought I could. I’ve also learned I can burn out more than I thought I could. The new me has learned that I count, something I thought was selfish and unmerciful before. Not only do I count, I’m not the family’s default. We EACH have strengths and weaknesses, we EACH can participate and cooperate within the recognition of them in ourselves and each other.

I now have zero tolerance for BS. It’s the most straightforward way I know to say it. Manipulation and guilt are often employed by both family members and my mom. I’ve changed the way I deal with it. It is simply ignored and walked through as though it isn’t occurring. And it works, even with mom. When there’s no response, it shuts the practice down, often leaving them reviewing what just happened and I get a much needed break!

I hope, and believe, that I won’t take peace and order and laughter and lightness and freedom for granted as I once did.
I’ve learned that ‘in the moment’ is the very best place to live. There is so much there! My mom and I share moments out of necessity, but that necessity has taught me the value packed in the present moment. It brings life back into life, and we can be fully there for each other. She is still my mom, in the moment. It’s where the greatest love lives.

I’ve become stronger in many coping skills for rough spots in life in general. Laughter, focusing on another, gratitude, and empathy, the ability to stand in their shoes and understand, and the ability to step out of them before they cause calluses because they aren’t my shoes. But I love the gift of connection and even the huge sadness that standing in mom’s shoes does for me, and for mom. It feels wonderful to connect, which provides some ease because of sharing. And often, mom helps me with my hard places too, which in turn blesses her.

Changes have occurred and I know more are ahead, but this whole experience has humbled me and strengthened me. I am not responsible for the journey others must walk, nor are others for mine. At the same time, I can proactively walk alongside them and feel their heartache, or their joy in moments, laughter, celebration. Sharing.

My caregiving time has distilled me, is still distilling me. It has a way of separating things into beautiful and ugly, but w/o the ridiculous weight of all those “extras,” like guilt, self pity, horror, anxiety and depression.

I now can say I need help. I now can usually 🙂 let my yes be yes and my no be no. I now can admit my weaknesses and clearly see my failures, but for growth and not self flagellation. Caregiving levels the playing field. As confused and distorted as this disease presents itself, the very act of working within those unusual boundaries can bring clarity!

I do not enjoy depression, but it doesn’t have me like mom’s disease has her. I can make choices she no longer can.

My last mention is that I hope I never have to walk this path again because life is short and as invaluable as the gifts of memories with my mom have been, and they are priceless!, it has required me to set my own life on a shelf and the out of balance of that over the span of yrs is not only unhealthy, but destructive. I now recognize that truth, without guilt. It feels peaceful.

I did my best, I learned a lot, I changed. I’d like to believe, for the better. And I continue helping mom, I continue doing my best, and I continue to change. It seems impossible that when this season is done, I won’t be a very different person than before it began. By the Grace of God, and by His ability to turn pain and hardship around to goodness, I take heart. He’s got this, even when I don’t, so everything’s gonna be Ok.

I’m frustrated and angry all the time. I never get to go out alone for any amount of time because there is no one to cover for me and I can’t afford to pay anyone to stay with my husband.
I find I’m just not the old me, just a shadow of myself….putting a smile on my face when I don’t mean it.

I’ve lost all my independence. I feel lost & sad. I don’t seem to care about ‘me’ anymore. I’m an kinky child if 2 only children so not much support. I take care of my mother in her home. I had to leave mine & I miss my life. I feel as though I will die before my mother & I don’t even care.

I’m mad that we spend so much money keeping the elderly alive. My mom is negative and self absorbed. She thinks of me as a servant.

I don’t care what other people think of me anymore. I just want to do the best I can & be honest.

I have become a very angry, unpleasant person, filled with resentment.

Mom lives in another state and I had to give up everything (apartment, friends, job, etc.) and move back to become her full-time caregiver.  She is very needy & doesn’t sleep on a regular schedule, which requires me to be available 24/7. This schedule does not allow me to have a regular job due to her constant requests.

I walk around mostly numb. However, I’ve found I’m a little more sensitive to other people’s pain than I used to be.

Caregiving has made me a better person. Despite a busy, action-packed schedule, I’m more patient than I used to be. The fact that both of us are alive and together is humbling.

Small things, like reading quietly in the same room, are experiences to treasure. It’s true—caregiving changed me forever—and I am more empathetic. I also understand challenges disabled people face.

In August my husband and I celebrated our 60th anniversary.

We have a 41 year old autistic daughter. Since birth we have been caregivers to an abnormal family life. We are changed in every way as we haven’t “fit” into the way of life of our friends and family. We didn’t ‘t fit as abnormal behaviors of our daughter caused us to be left out and to be given advice by those not understanding autism.

Blame has made us feel incompetent many times. We as parents cannot use reasoning with our child, you must continually try creative ways of dealing with abnormal behaviors. Often we have failed and the more we have tried we haven’t succeeded in having independence from “abnormal, abusive verbal and physical actions from a child we love and want so much to enjoy.

We are close to 70 now and extremely sad and depressed. We can’t enjoy the freedom of retirement as we are full time caregivers still spending our energy, our time and our resources.

Changed us???  Oh my how has caregiving NOT changed us.  We have no idea of the people we would be without the burden of caretaking “abnormal” behaviors every day!  Feeling sad, tired and hopeless.  ?

Depressed parents for 41+ years with no hope for positive change in our futures.

You know you’re a caregiver when the spouse who you called and treated as a partner becomes a patient to you, and seldom a partner. It thus changes you from someone who had a companion to someone who is lonely.

Caregiving has changed when I go to bed, how I cook, when I go to shop, When I take a bath, and how I sleep. Taking care of my stepdad 24/7 of 365 days a year.

How I relate to him when he wants to eat, sleep, and how he dress. Making sure he take his medication (swallow his pills). I know it is difficult for him to relate to anyone including his son. He will not go to his sons house to stay without me. I don’t get much sleep because he walks in his sleep, he paces all day if he has to go to the bathroom. It’s hard to convince him to use the toilet, he wears pull-ups just to help control his need to go.

I don’t get out with my girl friends anymore, they don’t call me to see if I want to get away. I fell so alone in this great big world. HELP!!!!

Written by Michelle Daly

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  1. WHAT IS THE QUESTION HERE! You know your a care giver. Your life revolves around another person. Shave, shower them, try to go to the loo yourself, WHERE ARE YOU? For gods sake, HOW DO YOU KNOW WHEN YOU ARE CARE GIVER? If you need to ask, YOUR NOT!

  2. I now have a set of unhealthy coping skills and an extremely dark sense of humor after 11 years

  3. Zero tolerance for bullshit.

  4. You know, if you have to ask, your Not!

  5. i had caregiver burn out..but i would do it over again in a heartbeat..i miss him so much.

  6. I cared for my husband for 8 mos.with brain cancer, together over 40 years.. but I wouldn’t change it.. became caregiver for my uncle after he was shot in the legs, attempted robbery.. New Year’s Eve ’14.. so at first it seem I could do it.. I Did..
    After the passing of my husband, people / family would say now it’s all about me.. but I still had an uncle to care for, then hurricane Harvey came and family saying I needed to place him in a nursing home.. I just couldn’t .. he’s been a blessing to me my whole life has always been there for me financially and could see how things were in my earlier life with my husband.. he has dementia and this has been hard too.. lonely is really the hard part and not having a chance to go out and not be on a time limit.. I’m been blessed with having my son living here with him while my house is repaired.. but my uncle has had his share of incidents waiting for me .. going outside looking for me waiting for when I get home. The minute I arrive from a quick bite with friends.. he’s going to bed.. overall.. I too wouldn’t change it. I’ve been blessed.. ❤️

  7. Started the caregiving journey in 2000, husband with dementia passed in 2014, mother with Alzheimer’s passed in 2012, now father age 96 but going strong. Somewhere around 2010 I lost myself. Now am just empty, tired and still lost. Don’t know who I am anymore and saddest part…I don’t really care anymore. My body does what has to be done, smiles, nods the head, whatever. The ‘me’ part just goes along. I painted for thirty years and loved it…now I look at a canvas and it’s just like me…blank. Been told by dr I am burnt out…hope someday before I die something will sprout and return me to me. It’s a long, hard, and mostly thankless road. If we didn’t love them I’m sure most of us would not go down that road.

    • May God bless you greatly.

    • I am so sorry, Gail. I did this for 10 years in my home for my mother-in-law. It was the hardest thing I ever did in my life.

    • Gail, I understand. Started Caregiving for my Grandmother in 1998, She passed on in 2002. Caregiving for my Dad since 2013, He is 87 with Parkinson’s. My Mom is 82 and has health care needs too. One of my sibling helps, however, we both work and are Caregivers Full time too. I completely understand.

    • I got my life back after 10 years . We cared for my mom and dad and I would do it again .. But it is damaging to the heart and soul , burnout is real . The emotions before during and after are a mental challenge daily , my mind goes crazy at night rehashing all the disturbing scenarios. I pray for you and all others faced with this … Just remember they love you and you love them … They would feel like you also if the situation was reversed. It’s so hard

    • Praying for you, im there also, but we do whatnis needed for our loved ones. They are blessed to have you during this journey, not many do.


    • Well, that is something that you would do it again. The thought of doing this again to me would be a death sentence…..

    • I might be sure to have some help this time around however I would NEVER not be there for my husband of 43 years or my Dad.

  9. I don’t know who I am anymore.

    • I completely understand

    • Yep … it’s so very easy to totally lose yourself!!!

    • I don’t know who I have become or who I will be after this…

    • You do lose yourself. You lose a lot more than you gain, that is for certain. I don’t understand the people who claim otherwise. I just didn’t see it. Feel it, live it. It was the hardest thing I EVER did and I did not love it.

    • I feel very lost.

  10. I’d have to write a book to give an accurate answer to this question. An easier question to answer is ;what hasn’t changed? Sometimes I ask myself; who am I? Where have I gone? While still teaching, I would be myself at work. At home, a servant, nothing more. Now not having work is saving my sanity on one level and challenging me to maintain my self hood being a 24/7 caretaker. If it weren’t for the tremendously loving support from so many friends, I’d not be keeping it together. FB, texts, Instant Message…. all ways I can stay connected to the outside world and save my sanity. A friend of mine sent me a study Bible. This too has saved my sanity by studying something that requires so much focus. But at the end of each day, I am thankful for every lesson along the way and I am thankful for land to walk on, a home to stay warm in, food for my belly, cars for transport, insurance for care, pets for comfort and, again, friends for love and support. I am blessed beyond measure

    • God bless you.

  11. Caregiving has changed me in so many ways. “Empathy”, I see things with different eyes, “Compassion”, I feel differently. I’ve always been a person who goes out of her way to help others; but, since my sons accident I go even further…. we very seldom get help. I think that pushes my desire to assist others even more. I feel things more intensely now. I guess this journey has broadened my view on a lot of things! Not to mention, It’s taught me so much more about what I am capable of. Strengthened my faith. Brought out my sense of humor, because GOD knows we need a fabulous sense of humor to make it through some of this stuff we deal with on a daily basis.

  12. Being my husband’s caregiver during his Alzheimer’s gave me joy and fulfilment. I would not change being there for him in anyway. We grew closer than we were before, which I thought could not be possible. I rarely slept, bathed him, changed him, fed him, I was there 24/7, because I wanted to be. I have discovered that not everyone can be a caregiver or even wants to be around a person who is I’ll. That to me was heart wrenching !
    I became his voice when he could not say what he needed to, I became his eyes when he would wander away, I became his hands when he could no longer feed himself, I became his eyes when I would read to him and I became his ears to listen to what the doctor’s were telling us/ not telling us!
    I carried the burden of telling the family he had Alzheimer’s and telling them of his passing. I will forever be impacted by the joy I received to honor Glenn in this way.
    Was it hard, yes! Would I do it again? Yes, for a loved one. Love endures.

  13. Wow, Donna Morton Whitsitt, i could’ve written the same comment as yours, minus the kids/husband. I held my mother’s hand until her last breath. It was the hardest thing I’ve ever had to do but I was glad to be there and tell her it was ok to let go. Only been 4 months and still very sad. Bless you.

  14. Wow,
    A lot.
    It is one of the hardest non-paying jobs that I ever had.
    You learn so much through it all. Eleven years. The last three were by far the toughest. Physically, and mentally. You lose a big part of yourself. You are living for two people. Fortunately, I was blessed with the sweetest most loving, never complaining, angel Mom who kept her sense of humor and taught me much. We had always been best friends and shared the same interests. She and my husband were so close and we all shared the joys of our children, pets, travel till she couldn’t, gardening, family reunions, life. She had congestive heart failure and short term dementia. I couldn’t have done it without my husband , children and a few family members. Hands to help me lift her and hearts that lifted our spirits. I was, appointment maker, many doctor visits, hospital stays. She was given 6 months to live by her doctors, she never knew this. Well, three pace-makers and eleven years later God showed us all a different story. She even got to know great grandchildren.
    I was a daughter, wife, Mom to kids still in school, out of school and Grandmother ,housekeeper, cook, and even mostly raised our nephew, one of my brother’s sons who was only six months younger than my own. You learn you can do things you didn’t think you could do.
    You have to. My two siblings never helped physically or financially…not even a thank-you.
    Guilt and greed and lies were all we received from them. Lies that we wouldn’t let them see her…I guess lies make it easier on them. You strip the bed sometimes more than daily, unexpected baths, shampoos, you are a hairdresser, medicine giver, entertainer, eventually you do ” everything “, all personal things. You do change but she was a Saint until the end. We would do it again. They become your children. She held my hand when I entered this world. It was a blessing to hold hers to the end.

  15. Taking care of my husband 24/7/365 for the last 41/2 years has definitely changed me, and I’m not happy about it. But I have no choice. None.

  16. Made me bitter, so many ungrateful ppl out there

  17. I am my adored Mum’s daughter.Growing up I rebelled,I loved and at times I really disliked her..In her later years,widowed and doing it all on her own,I saw a side of her I had totally ignored before.She showed her strenght,her sternness and her immense love to her daughters and to her 4 grandchildren..Her final journey we were humbled and honoured to share with her..My Mum gave me her love and I found peace in that.Love you.❤️

  18. It gave me surprisedly empathy and more strength than I knew I had.
    My husband passed in ‘16 and now my Mother has Vascular Dementia with Alzheimer’s but I have chosen to be a caregiven again.
    My strength is my love for my family and faith in God. ❤️

  19. Scott Schwandt know the feeling well, and it’s a terribly hard thing to do, but we do it because we love them. Thoughts and prayers are always with you

  20. It made me very tired.

  21. We had both worked until D struck my wife who had done all the house work plus more. Now I cook, wash, clean, shop, make the bed, mow de lawn, feed & water the dog, make numerous decisions alone, bank, pay bills, water plants I must have miss something but dementia has change my life.

  22. It’s turned me into a nurse w/o financial compensation or degree and it’s forced me to unwillingly become a recluse!

  23. It’s altered my life tremendously and I’ve learned how to give up and sacrifice. It’s not all about me anymore.

  24. I think all caregivers can agree this question is not a “one size fits all”. Each of us has a different philosophy, approach and interpretation of caregiving because of the challenges we face on a continuing basis. We all could write a novel about this subject because of the complexity that is caregiving. My main interpretation of how caregiving changed my life is that it turned it 180°. I learned skills I never thought I’d need to know. I continually have to accept that sleep is a luxury, not a necessity. Caregiving is a double edge sword. There is greatness and harshness both.

  25. To tired to enjoy others and don’t want to go anywhere afraid of he might need me

    • Please be sure you take time for yourself, even if it’s an hour. Your love one needs you to stay healthy. God bless!


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