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!!!!

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