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I’m asking about this because I feel as though I ‘lost’ myself during my caregiver journey. It finally ended for me in November, but I am still processing the last 10 years of being a primary caregiver to my mother.
I recently attended a social event with old friends, and did a good job of pretending to be outwardly normal; inwardly, I still feel like a shell of myself. I didn’t talk about the caregiving much—nobody really wants to hear about it, and people who have never been caregivers don’t really understand its impacts anyway.

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Why are you pretending?
For whom? For what reason?

As to were you changed? Of course. The one person I had been able to depend upon my entire life had died. I had been forced into learning a whole lot more than I ever wanted to know about POA and about Trustee of Trust and Executor of Estate. I was more anxious and more fearful of the sheer unpredictability.
And in so many ways.

We have many roles in life. They are always changing and we are always losing some and adding others. Now you are in a new role and that will change you as well.

All of this is called normal. This is life. You are not the girl you were when you went to prom. You are someone else. But there are still memories and vestiges of that girl within you.

Take are, Danielle. Try to do things that bring a zen to your mind. Refinish the floors or collage or paint or make earrings. Learn to knit or make quilts. Start a grieving group.
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Reply to AlvaDeer
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AlvaDeer, change is the only constant. Thanks for your response.
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Reply to Danielle123
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Caregiving is a isolating experience and it does drain your Life force . I feel I have aged 25 years the Past 10 years . I feel Old and I am Not Old . Gosh I am On a new chapter of Life and probably my Last chapter . We Realize our time on Earth is finite . So what ever Goals we may have Had 10 years ago or Now different . Time to reinvent yourself . I Didnt date , I didnt travel - I didnt do a lot of things But take care of people since 2014 . Eventually we get back to Ourselves . Join some support groups - I Take courses at Upaya Zen Center - My donation , free or a fee . Frank Ostaseski Has a Good course that meets once a month for 2 hours for $200 . He Has done a lot of caregiving . You Can find that Link at Upaya . We Just had a terrific Calligraphy class and Haiku class . There is a sense of community . You will Heal eventually . no One talks about How traumatic It truly is . or how stressful and exhausting . It takes time to recover at least 2 years or More .
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With distance away from the experience, and some healing, I can say caregiving changed me for the better. The caveat is that I never did it full time or had anyone living with me full time outside of a few weeks during surgery recoveries. I wouldn’t have seen this during the stress of it all, or for a while after, but I now know it made me a more considerate and compassionate person to others in need. It taught me about my own mortality and to better appreciate the time and health I have now. It showed me how to better have empathy for hard situations. And sadly, it made me more appreciative of the parents I no longer have.
Caregiving is still fresh for you, the wounds and experiences a bit raw. With time you will move forward and heal. I wish you peace
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Reply to Daughterof1930
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It takes time . I agree with the other poster who says 2 years . That’s about how long it took me after over a decade of caregiving , to feel I was living my own life .

You have to learn to be an individual again . A caregiver is tied to another person’s life . You need to be intentional about what you want to do . What you missed doing , what new things you want to do . It will get easier .

Yes , caregiving changed me . I learned how to set boundaries , late better than never. I learned and will hopefully remember as I age to be very aware of how my decline affects my children. I do not want to be a selfish , demanding, uncooperative , elderly woman and stress out my children .

Caregiving for family killed my nursing career . I left it at only 55 years old , impacting my retirement savings . I regret that . I should have set more boundaries . My parents had money but would not allow strangers in the home to care for them .

Finally , I fear I will have less patience should my husband need caregiving . I feel my caregiver tank is forever empty .
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Reply to waytomisery
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AliBoBali Feb 27, 2025
I think my tank is forever empty, too.
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The last 10 years have changed all of us, whether we or not we were caregivers. Illnesses, Covid business bankruptcy, death of family members, moving house, retiring – we all change. You can’t go back. What you need to do is to work out how to go forward. You can pick up bits of the past, if and only if it’s possible and you want to.

From the sublime to the ridiculous, I’ve started knitting again, after about 60 years! Not something I ever dreamed I would yearn to do, but it works for me now.
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Caregiving profoundly changed me and my life. Undoubtedly. Some of the life changes that coincided with caregiving (i.e., extreme illness) are inextricably linked with the whole devastating kit and kaboodle now, for better or worse. I can never think about 2011-2017 and not think about the wild caregiving journey I was on.

And I'll never be as confident or carefree as I used to be. Ever again. Regardless of what comes -- if I won the lottery tomorrow, jet setted off to Monaco, met a handsome prince, and fell madly in love -- I still can't undo the deep changes to my psyche. Nor would I, which is good since it's a moot point.

It's not so much I'm a shell of my former self; I'm just different. It's a new normal now, and I think that's true for anyone who goes through something traumatic that lasts for years.

That's not to say that caregiving is inherently traumatic. We all come to the table with different personalities and abilities, and so do our loved ones. But for some caregivers, it will be a life-altering time: before and after caregiving. That's how it is for me.

Remember this: Stress studies are done on caregivers. It's a HIGHLY stressful thing, so take good care of yourself during and after.
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Sendhelp Feb 27, 2025
You have changed Ali, but I see it is for the better.
You can do,
or be,
free now.
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*Duplicate
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At the risk of sounding selfish: After years of watching my DH's health and mind deteriorate, I never want to do this again.
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Daughterof1930 Feb 27, 2025
Not selfish and quite understandable
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Absolutely. I'm not as willing to give anything of myself to anyone needy, I'm much more resolute when it comes to my boundaries and I'm much less able to suffer fools.
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Danielle123 Mar 1, 2025
That’s how I feel. I just escaped from a trap, and am much more wary now.
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I got caregiving burnout in 1990. I was taking care of a younger sister for about a year after my mother passed. I was working as an aide and was promoted to an office job with not much more pay. I was on call after work and was not paid for the overtime I put in. These companies get over on people. People will keep you working twenty four seven for free if they can get away with it.

I got away from caregiving until my daughter got sick some years later. A few years later, my husband. So, there was no getting away from this for the long term.

Fast forward, I work as a home health aide post retirement. Clients are selfish and do not think of their aides as having a life outside of their caregiving duties. The way they tell it, we work for them even though we are employed through an agency. So, we are treated like servants or hired hands until word gets back to the agency what these people are doing. The clients I've gotten so fat don't need personal care and are looking for maid service.

For me, it's keeping my boundaries in place and reminding these people that I'm there for their personal care.
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Scampie1 Mar 1, 2025
I don't know why the word choice put fat instead of far.

I have this problem when I answer using my cell phone instead of using my laptop.
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I found out that I was a stronger person than I thought I was. I also found out that Caregiving, especially where Dementia was concerned, was not my forte. I really had a hard time dealing with the unpredictability of it. I like order. I get overwhelmed if too many things are coming at me at once. I can only deal with one thing at a time. My daughter says I have some anxiety.
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Absolutely. I finally realized that I have slowly withdrawn from friends and family. I still try to plan events to have fun, but I'm always a little flat. I don't feel "light" anymore and very heavy. My father is still living, so I am not sure how or when I can reverse this.
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Reply to JimsOnlyChild
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Danielle123, could some of what you are feeling be from grief? You may find the pain lessens/softens over time. Maybe a support group would help.

As with any major life change, things can change. I find I'm thinking more about my planning documents and wishes for my later years. I want to spell out what constitutes a good vs. poor quality of life for me. I also want to include that if one of my kids provides care, something more than just running some errands for me, they should be paid for their time.

I learned a lot on my caregiving journey...how to treat various health issues that cropped up, navigating the healthcare system, and advocating for my mom. I also crossed paths with people I otherwise wouldn't have...health care workers, my mom's aides, and others in my caregiver support group. I'm happy my adult children got to spend more time with grandma (before moving in with me, she lived about 250+ miles away) and I'm thankful for their interactions with her that put a smile on her face. I also feel this was a good opportunity to pass on my values. Last Mother's Day, shortly after my mother passed, I emotionally told my adult children to please not forget about me like my siblings (8) had forgotten about my mom.
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Oh yes! I am more patient, and have more empathy for others! I also ..after two years of counseling.. have learned I need to put me first then mom. I am a good daughter but also aging..I am 74 moms 91. She has had a full retirement..I sacrificed mine to cater to her. I chose a good LTC facility. She likes it there and enjoys people who are like her. Dementia patients she feels equal to. I now enjoy my life and visit her often for quality time. My bitter feelings are gone thanks to my counselor and my hard work!
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Reply to Sadinroanokeva
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Being a caregiver has brought me a lot closer to God. I couldn't do it without Him. Every morning I pray and ask for the strength, endurance, wisdom and patience that I'll need for that day.
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Reply to jwellsy
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Mom passed in April.

I met some very nice ladies in a small senior yoga class I was taking in a small mountain town.

I was invited to a group ladies lunch at one of the ladies homes.

It was really intimidating and overwhelming for me to attend. I had lost my ability to interact with new people in a social setting.

The ladies were very nice and also invited me to lunches in restaurants but
it was still intimidating for me socially.

It is now almost a year down the road. I feel like my priorities are resting and rebuilding my life.

Pre caregiving I was a very confident social person.

Caregiving was really a fulltime job for me for 6 years.
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Danielle123 23 hours ago
The resting and re-building are fine priorities for you to have.
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Brandee again,

I scanned the other responses and agree with several posters
that I've lost my confidence and ability to be carefree.
My lifeforce has been drained. The loss of confidence is unexpected and strange for me.

The difficulties of dealing with a bipolar sibling also crushed my spirit.

Mom has been gone for 11 months. I expect the next 12 months to continue to work on sleep and rebuild me.

Mom has been gone for 11 months.
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Danielle123 23 hours ago
Hi Brandee: I’ve lost my confidence, and ability to be carefree as well. When I began caregiving my Mom 10 years ago, I was buoyant. Now, I feel drained, like you do.

I am moving my life in the direction that I have set for myself, though. try to do a little bit each day. I owe it to the person who felt so trapped for so long. Yes, we have to re-build ourselves.
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