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For example: like do you feel that you're mood is low on most days? If you're not as positive as you used to be? What do you do now that you did different to before, for example I used to panic a lot and run around like a headless chicken over the slightest thing, I like to hear other's experience and perspective, as I think that this forum and the people using it are really insightful and have helped me with how I see things now, so thank you :)

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I’m living a life of anxiety and stress. My parents are in a nursing home but I’m still working on finalizing Medicaid and the stress is KILLING me. I really do not have any insight, all I know is if there is a hell, this would have to be it. I just pray something will change sometime soon. Dealing with two 95 year old people and their miseries is horrible and I really think they will be outliving me.

I don’t think I will ever be the happy optimistic person I was five years ago. That person is long gone.
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BurntCaregiver Jan 12, 2024
Yes you will be the happy, optimistic person you were. Hothouseflower will bloom again. Give her some time.
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My caregiver days have ended. I can tell you how I felt when I was in the thick of it all.

The upheaval that goes along with caregiving is such a mixed bag of emotions.

I handled everything well in the earlier days of my mother living with us. I am married with two daughters. My children were still in school and involved in many activities when mom moved in.

Mom could be left alone. I was still working. Life hadn’t changed much for us initially.

When my mother’s health deteriorated, I felt sad for her. I felt like I lost my own identity. I morphed into a full time caregiver.

Not only do our parents lose their independence, we lose our independence too. I believe an unhealthy codependency occurs when we aren’t mindful of what is happening.

So, I think the strongest emotion that I felt was being invisible. I lost myself in the process of being a caregiver for my mother. It’s a huge sacrifice. As much as I loved my mother, I don’t think I would do it again.

What have I learned the most? My life was just as important as my mom’s life, so was my husband’s and children’s lives.

I also know that I would never in a million years expect my children to sacrifice their lives for me the way I did for my mom. Honestly, my mother wouldn’t do it the same way again. She didn’t expect to live to be 95!

I was very naive about caregiving. Neither of my parents took care of their parents so I was clueless as to how much of a struggle it would become.
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Kaysmile10 Jan 12, 2024
I agree with everything you said. I found it interesting that it was mentioned that you would never expect your children to do that for you. Your mother did not expect to live until 95. What are your plans to not have your children have to care for you when you’re elderly? Depending upon the care, someone needs assisted-living or nursing homes can be $10,000 a month or more. there’s a big gap in our social system that does not care for the elderly.
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I learned that now I could swear by any means that I’d rather have a root canal than see my mother, and I’ve had two root canals so I know exactly what this trade off entails

Don’t get me wrong, mom gets great care. But I feel like my life force has been sucked out and I’m a stressed out hag at this point. Meanwhile people love my sweet old lady mom ( HA! They weren’t her target of complaints )

I’ve learned I can set and hold boundaries well, however holding those boundaries for so long is exhausting. I don’t like the resentful crazy I’ve become and pray I can get some semblance of myself back…so long as I can outlive my mother . I am BEYOND DONE.

Peace to all of you!!
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BurntCaregiver Jan 12, 2024
@Madisoncuckoo

I hear that, sister. Loud and clear. People are the same about my mother. They were never her target. They were never her scapegoat. They never had to literally clean up the p*ss and sh*t while being berated, belittled, and mimicked by the person they're cleaning it up for.

I get it. I have some good news for you though. You can have your life back. You can start getting it back right now, today.
Caller ID is the best invention ever made. You don't have to take any calls from her that you don't want.

In fact, just today my mother has called the office five times since 8am. There's nothing wrong because I called her caregiver on her cellphone to see what's up. Nothing is up. She's wants to lash out at me and fight. Not interested.
Just ignore the calls and only take the ones you feel like taking.
You'll be okay. Start doing life on your terms and you will get your life back.
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I was an in-home caregiver for 25 years as my profession. It's very hard work and is often miserable drudgery and mind-numbingly boring. Especially when dealing with the elderly and dementia. Tough though it is as a paying job, when I was caregiving for my mother it made the misery and drudgery of this work go atomic. I should not even call that "caregiving". I should really call it "careforcing" because I did not choose to give anything.

I will never be a caregiver to a needy, elderly person ever again. Never again. In fact, when I reconciled with my husband and we got a place together, we had legal documents done up that no person would be moved into our home for the purpose of one of us becoming a caregiver to them. Nor will one of us relocate to a family member's home for said purpose. There are a lot of seniors in our combined families and none of them are moving in here.

I would say that the caregiving situation I lived in changed my personality and way of thinking. This happens from the experience of caregiving, but if there's a history of abuse with the person you're caregiving for it can and will ruin your life. It made me doubtful of my own skill and competence. It destroyed my self-confidence. It turned me into a depressed, miserable, negative, downer who gained a ton of weight.

I was able to claw my way out and some good things happened for me. I learned the lesson though and it that lesson with me is a hard 'NO!' to ever doing it again.
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I think during the years that I was a caregiver for my Husband I became more calm, more understanding, more accepting.
To not be more understanding, accepting you end up just spinning your wheels and getting more frustrated and that helps no one.
I also learned to search for any opportunity that would help me safely care for my husband at home. One of those opportunities was to contact Hospice and get the help of Hospice as soon as I could. I got very lucky with a great Team. Never hurts to contact Hospice as soon as possible.
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Kaysmile10 Jan 12, 2024
Grandma 1954. You’re very fortunate that your husband was eligible for hospice. Glad you got the help that you needed. You’re one of the lucky ones.
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Even though my mom has a live in caregiver M-F I still feel totally stressed. I’m anxious and somewhat depressed. I have an adrenaline surge when the phone rings, and I hate to even check my phone in general.

I have seen a doctor, am on anxiety and depression medication, go to yoga, read, and limit my visits to mom’s to 2 short visits during the week days. None of it really helps. I’m constantly waiting for the next crisis, or just thinking of what needs to be done, what bills need to be paid, and covering for a family member who said they would take part of the weekend but now can’t.

And worse I’m anxious about the future, probably having to move mom into LTC, applying for Medicaid, all of it. I know I’m “supposed” to be sad about her impending death, but I don’t think she will be dying anytime soon. She’s just getting harder to care for.
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My caregiving days have ended. It has been a little over a year now since my mom’s death. The hardest part of that journey was balancing my attention between my mom and my family. I felt such an obligation to be 100% focused on both my mom and my family and, at the end, felt like I failed both. Being torn between people I loved and not doing a good job with either. I have struggled with the feeling of failure but that is mostly because I am a planner and tend to strive for perfection which is impossible in caregiving (and in life).

I will say caregiving ruined my confidence. I am slowly gaining it back but it takes time and good counseling. Before I thought I could conquer the world. Now I am so happy to conquer the day.
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My dad use to tell me that I had alot of patience. Well that is gone since I am mommas medical and financial POA, primary caregiver, trustee and executor. I am quick to get to the anger stage. Didn't use to be. I guess I have been over stressed and over worked for the past 13 years that is what I have become. Been hurt so many times by my siblings and momma it is unbelievable so I have built this wall up to protect myself. I have been estranged from my siblings for the past five years until recently when we all went out for christmas dinner with momma. Still had to put up with crap from all of them. Thats why I backed away for the last five years. Well not momma but the rest of them. Will never take on all of these jobs and responsibility again. It has effected my health and my life.
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Oh, I'd have read more about dementia and how it presents, for sure. We always think that our loved ones will have some catastrophic event or be pecked to death by cumulative health issues, but hardly anyone thinks about Alzheimer's sneaking in, and when to be alarmed about what seems like age related memory loss. It's just not out there as something to assess each time for the elderly in the healthcare community. I audit charts, and I see clear documentation of loss of short term memory, but providers still discharge these patients to home by themselves without stopping to think 'Hey, wait a minute...," because the person can no doubt showtime like crazy.
Mom's here with me in a branch of an AL that was promised to be dementia-focused and able to adjust to her growing needs as her disease progressed, but seems like it's devolved over time to basically a hospitality model with a key-fobbed access. (Thanks, ****ford!). Trying to get them to stick to a pretty simple care plan and communicate healthcare information has been an uphill battle for me that has become a real issue as Mom's abilities decline. To me it seems like they herd families into supplying private care aides to make up for their staff shortages. And they're happy to take our money each month, of course. I think we've been identified as difficult because my healthcare background has made me question lack of care plan adherence. I hate going there and feeling like I have to beg for communication about my mom's care. Anyway, push has come to shove as mom has had some successive health issues, so it's time for MC and we'll be out of their hair for good soon. Good riddance.
I'd love to move to a new area, myself, but I feel tied to this area because I don't want to deal with moving both myself and mom. And I'm resentful of the feeling of filial obligation and meeting the expectations of being a 'good daughter' when the Alzheimer's makes her indifferent or angry at me (G*d forbid she'd actually let me help her), and the pity and sadness I feel for her. I love her, but she was never comfortable expressing affection, so I think I have less affectionate memories to rely on than others when I need to push through. And I think I get exasperated sooner than perhaps someone who had a different relationship with their mom. So I think about that too. She never wanted to be a burden, and she planned well to not be one, but we didn't plan for dementia.
'The best laid plans...'' I guess.
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