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I was Mom's caregiver for about 10 years, she had Parkinson's, the last 5 were very intense, 24/7. Here's the thing: I still don't want to be responsible for much of anything, even having to care for my dog and cats frustrates me...I was always the one to "take care of business" or the "problem solver" and felt a small degree of pride in being that way. Now? I'm like a different person! I don't handle things as well as I used to, get the shakes or start to cry when things go wrong, or can't make up my mind what to do, and that's not who I was. I went to Hospice grief counseling for a few months, which helped me to understand more about the grief process, but then the counselor kept asking me what I wanted to do with the "next chapter of my life" and I don't have an answer. Anyone else out there trying to figure out who you are now? Thanks.

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I can't answer this from person experience, but my brother was widowed at 52, and had spent 20 years as a care give for his wife who had a lot of illnesses, and was not expect to live that long. It consumed him, aged him, and derailed his life. I have no doubt he'd do it again in a minute, but for the last 3 years, he's done a bit of substitute teaching, and just decompressed. I expect to make plans for the rest of his life in a year or two. I want to make sure he's never in a position of having to care for anyone in my family as I want him to have a bit of freedom, and a chance to live his life.

Where I am going with this, is someone who was a long time caregiver expects to take 5 years to be able to make any plans. If you don't have to for survival, I think it's fine to take as long as you need.
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Pray and ask the good Lord for guidance
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I also call this the "shaken bug in a jar syndrome". I feel like a bug that has been captured by a kid and shaken up inside the jar...then the kid tires of the game and the bug, opens the lid on the jar and sets in on the ground....and the bug won't leave the jar......
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Sulynn, This is just about exactly what I have been going through. At first after my Mom passed away I was so busy doing things and taking care of things that needed to be done. Now, nearly 2 years later I am not sure what I want to do or even can do, and if I think about going somewhere by afternoon I don't want to leave the house to go. I feel like my energy is zapped by late morning. I have had people ask what I want to do now. I don't know, I feel clueless. I meander through most days. I thought it was just me that was going through this at the 2 year mark....
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I am trying to figure out the same thing now. My dad died 3 weeks ago at age 93. He had a stroke 10 years ago and I took care of him since then. Except when he was in a nursing home the last 4 months, I was never away from him, and even visited everyday at the nursing home. People ask me now what I'm going to do with my free time, and I don't know. I miss my dad too. My mom died 25 years ago, so I feel like I'm all alone now. For the past 10 years everyday I dealt with his care. I'm so thankful for this website, because at least you know you are not crazy, and many others are going through the same thing. I guess one day at a time, many people are telling me it's my time now, to take care of myself. Trying to figure out what that looks like. Good luck to you. We are strong and if we lived through taking care of a parent like you and I did then we will get through this difficult time too. Hang in there.
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I just wanted to say that everyone's comments here - I'm going through with it, too. I really, really thought I was going to be able to avoid the PTSD despite having been caregiving for about 25 + years. I really thought that having a job would help me remain 'normal'. I've been on this site for about 5 years. I Knew about how caregivers would have a lot of health issues after they became free of caregiving. I did my best to see the doctor regularly in hopes of avoiding this pitfall. Didn't work, by the way. While everyone around me were having the stomach flu or the runny nose - I had the major coughing that pulled an upper chest muscle. Now, a normal sneeze can re-pull that muscle (happened twice now) and causes constant pain 24/7 for a week or two.

But, reading everyone's comments above, I cannot avoid it. Yep, I'm also going through PTSD. I had all these dreams while caregiving of all the things I can do on my free weekends. And I can now go out to dinner with sis! Except.. all I want to do is stay home. I even visit fave sis on a Saturday, just so that She Doesn't Visit me on Sunday, my designated stay-at-home day. I've noticed that I've been resentful when sis visits me on Sundays. I'm even like trying to inch her out the door!

On xmas day, I went to the tourist area and blended in with them. No one stopped me to make conversation. Everyone was doing their own thing. I spent that day among strangers and was not obligated to make conversation with anyone. I found it very relaxing. I've decided to do the same on January 1st. I'm going to the tourist area. I realized a few nights ago that I've never really had any Me-Time where it was just me and my thoughts. Not in front of the computer. Not reading my ebooks. Just me and my thoughts.

I had written a long comment (before this one) and then deleted it. On that first comment, while I was typing it, do you know what popped into my head? ...
We Survived! We all survived caregiving. We didn't die before those we were taking care of.... And like all survivors, we now have to deal with the aftermath. sigh......
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Dear Sulynn49,

You are an amazing person for caring for your mom for so long. I hear you. I feel the same way since my dad passed last year. I just have enough energy to wake up and go to my job but that's about it. I try and not take on any "responsibility" as well. I feel I have been responsible since I was a child. I'm the oldest of my sibling group. It was always take care of your sisters. Then my mom got cancer and I ran her to every appointment and follow up. Then it was help your grandmother, so I ran errands with her, too, till she went into the nursing home. And then my father had a stroke and it was more responsibility. I felt so angry and resentful by the time I had to help care for my dad. I felt I let him down.

Just this past week I thought I would try and go through more of my dad's things and try to donate them to the homeless shelter. I had avoided this all year, so maybe I am turning a corner slowly.

Most days I struggle to know what to do or where to go. I wish I could feel normal but I just don't. I try to be patient with myself, but its been hard.
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BTW sulynn, I totally get the pet thing.

If my neighbors hear me in the morning, they surely must think I’ve totally lost it!

7:30am: Taking three dogs out one at a time to do their thing.
Me: “Good Christ! Can’t you leave me alone for ten minutes? Can’t I even have an effing cup of coffee before everyone wants something from me? For eff’s sake....”
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Well, I have to say - I am dumbfounded!

This is exactly what I’ve been going through! I’ve thought about posting but even getting it into words seemed like too much struggle.

My mom passed a year and four months ago. I looked after her for six years and she was beyond a handful. I also have an adult special needs son at home who needs continuous care and supervision.

But the thing is - I was always the person who could do nine things at once. Stress was just another thing on the list to be dealt with.

Since closing my moms estate last April, I have been completely lost. Nothing gets done. Mail gets tossed in a drawer - thank God hubby is in charge of our bills! If I had a nickel for every time I’ve said -“I’m gonna box up mom and dads papers” I could hire someone to do it for me. So - they sit. Everything sits. I sit - and space out.

I’ve been wondering if I’ve had some sort of mental breakdown.

And my health? I never use to have time to get sick. Now it’s one thing after another - spent the Sunday I had planned to Christmas shop in the ER - a place I hate more than anything.

WTH is happening?

I’ve sworn that I have to get it into gear starting January 1st!!! I realize my life is being frittered away - in a trace - in a daze - one day after another. It’s frustrating.

I do feel a bit better knowing I’m not alone. This site is absolutely the best for that, isn’t it?
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So I'm not alone!! What a good thing to know and my thanks to all of you...I too want the "old normal" back, but from what I've been told that's not going to happen. I asked the counselor about PTSD, as I've read it can happen to caregivers, but that wasn't her mindset...and I've got that long "to do" list that never seems to get started let alone finished. It's odd, when Mom was alive and all I got was a couple of hours a week to go shopping, I hated to come home...now that I can go anywhere/anytime? I don't go much and when I do, I can't wait to get back to my "safe zone"...even having to be somewhere at a certain time stresses me out. Who would've thought that helping someone you love would make such a difference in your "self"...gracious!
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Wow, thought I was the only one like this. Cared for special needs child and when he was able to be mainstreamed and doing well, father took ill. I've been dealing with him
on nearly daily basis for over a decade and no end in sight. Not to mention a steady parade of critters. And having to handle dealing with abusive ex. Sheesh. No wonder I've gotten burned out, but I worry I won't be able to get my drive back. Thank you thepacifist for your thoughts about keeping a joy journal. That helps.
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I can see myself becoming like this. I already am like this... in a way.

I think it's okay if you don't want to do anything. Has anyone told you that you might be suffering from PTSD as well? It's just a thought and something to look into. Maybe you're getting the wrong kind of guidance.

Maybe make a bucket list for yourself of things that you would be very upset that you didn't accomplish in your life and work toward just doing ONE of them. No matter what it is. Also, document things that bring a smile to your face. Carry around a notebook and whatever makes you smile, makes you laugh or brings you joy write it down. Then you'll understand more of what you need in your life.
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I can see having this mindset. I am tired of being there for everyone. I have babysat, ran non-family members and family members on errands and to appts. I took care of Mom with no sibling help. So, I am not caring for anyone else, unless its my husband. I feel bad about this, sort of unchristain, but when I get attitude from someone I do alot for, not doing it anymore. I can see not wanting any responsibility. I no longer have animals because of this. Just wonder who is going to be there for me. But, you need to do something for yourself. At this time, just say no, you need u time aft caring for someone for 10yrs.
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I've still got mom, she's in the nursing home now, but I too am struggling to find some direction in my life. I'm still young (under 60), my peers all have jobs, a significant other, families, but I just can't make myself jump back into the race. I still visit mom every day which thankfully adds some structure to my life, but i manage to fill the rest of the time doing mindless nothing. I said I would do all these "things" when I wasn't responsible for mom's care anymore, but... meh.
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Sulynn, after reading your post, I felt like it was something I could have written. Sorry for your loss, my Mom also passed 2 years ago, my Dad a year ago.

I, too, was always the problem solver, now I could care less :P Ah the shakes, I have those, too, I finally gave in and had my primary doctor prescribe something for me. The meds do help, but I use to be the type that I wouldn't even take an aspirin.

It's like we need to find a "new normal".... but I want the "old normal" back BC [before caregiving]. I just hunker down at home. Oh, I do work part-time and I do look forward to going to the office, makes me feel sane again. But once through the front door, I become a couch potato channel surfing, or hanging out on the internet. I have a 101 things to do around the house, and there is still 101 things still waiting.
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