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I find that there are some of us here who seem to take on more responsibility and more guilt in caregiving. ...Especially with regard to hospice, some of us seem to feel responsible for the fact that our parent died. Some of us appear to be suffering from Post Traumatic Caregiver Syndrome. Some of us just need to talk about strategies for post caregiving healing and self care. Please share your journey, and what has worked for you, post caregiving.

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CW- We youngest are responsible, too.
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CW, im sure youre right about the youngest often being appointed caregiver ( perhaps bullied by the elder sib(s)? I've certainly seen that dynamic!
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JoAnn29, your is very emotional; thanks for sharing your experiences with us. You definitely faced some challenges!

Lizzy, that "high alert status" is one reason I think caregivers suffer from our own form of PTSD.
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JoAnn,

It feels to some extent that I haven’t come down from that high alert status we are on as caregivers. I’m much, much better than I was 2 years ago. Just not quite there yet.

Or, sometimes after all we’ve been thru I wonder if my patience and tolerance for petty stupid “stuff” is just gone. I find myself wondering “ why and how is this even causing a disturbance around me?!?”

And I question myself about what I may be getting wound up about...am I over reacting? Usually not. But years ago my patience would hold out longer before My eyes would start rolling and I Would slap my forehead.
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Like Izzy I get "wound" up and overwhelmed easily and have no patience.
I am the oldest of 4. My sister passed 20 yrs ago leaving a 7 yr old boy. My sister was dying of breast cancer and because I had a 16yr old with a baby I watched, she asked my brother to take her son. At 18 my nephew came up here to live to go to school. Because of a neurological problem, that didn't work out but he chose to stay with Mom. Nice, but she was 80 then and could not deal with getting SSD for him and the Special Needs Trust he needed to get it. I am his POA so handle his Medicaid, etc. I worked p/t till 2011 when I retired. After 1 yr, I agreed to watch my daughter's baby until ready for Daycare, 18 months later, I had to take in Mom. I think it was the final straw. It was always ME. I gave up opportunities Because I was caring for someone. Now it was 24/7 with very little breaks. She grew frail before my eyes. At times I couldn't look at her. She would have her paranoid episodes and of course I was the bad guy. ME who she always depended on. I know, it's the disease, but it still hurt. Since I have a split level, she had the family room on the lower level. I dislike that room, mainly used by the kids and friends when younger. But, it had a bathroom w/shower and easy access from the house. I hated having to gate her in but she didn't do steps well. If she fell, she would land on cement covered with carpet. Finally, decided on an AL. Figured she would have others to talk to and able to get up and walk when she wanted. Eventually a NH. I try to think of the times before Dementia. It's hard because all I see is a frail old woman who was in her own little world. I was mad at her Church for forgetting her after years of volunteering for committees and getting together a big dinner the Church had once a year. When she passed, it was a relief. No longer did I have to worry about her and be overwhelmed with the responsibilities that come with caring for someone and...The house they left. My brother says I am my own worst enemy and I agree. A little OCD there. Mom was 89. Her journey thru Dementia was six years. She never would have wanted to be like she was. She believed she was saved so I am sure she is in a better place and that gives me peace. My regret is I had no patience. Just pray that my experience will help someone else deal with the loss of a loved one.
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As the last born child I am a little offended at the implication that only first born kids are responsible - in fact I've often noticed that the older kids manage to fly fast and far, leaving the youngest to become the de facto caregiver.
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Ihave, ((((hugs)))))). Glad your sis stepped up to handle the funeral. Worry about one day at a time this week.
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It’s 4 in the morning. I realize this website has helped me through this whole thing. There are so many like me out there. This parent care is so large, almost an epidemic. I would like to thank you all. Next thing. I am the first born. Always the responsible one. Now , I feel so bad for my mom. No one ever just came up and said , I can handle 2 hours, talk to her, take her out, or even just buy a milkshake. I think I was with her so much, I never really saw the signs that she was starting to fade. I just kept throwing her in the car and away we,d go. Her half slumped over, sleeping, seatbelted in. Boy, what did I look like. Now,, my sister is around , involved with funeral. I am numb and just want to get through it. I will never take on someone else’s life on again, it took everything out of me. I stare in the mirror and try to figure out who I am. Turning 60.
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Ihav-so sorry for your loss.May God help you through.

Great thread Barb,also the disease of this youngest. So many coulda, shoulda, wouldas. My dad has been gone for 1 year and almost 6 months.I miss him everyday and I loved him so much. I still cannot rid myself of these thoughts. Therefore, I seem to try so much to cover these things with my Mom. So that I won't have those feelings. But, yet I KNOW I will still have them when her time comes. 
Even though we don't have any power over these things, we still feel somewhat responsible even though perfection is never attainable. It seems even more difficult now, to not feel responsible for many things. Experiencing the loss of Dad, sure makes me want to do so much more for my Mom, because the loss of her will be the hardest for me. :( 
Thanks again Barb, and all of you who have shared, we learn so much from one another and draw strength from each others journey. May God bless you all.
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Having been recently "fired" from any caregiving for my mother by my brother with whom she lives---I have been experiencing an increase in depression and anxiety that I see now probably is attributable to the sorrow I feel that I am simply not allowed to be any part of mother's care. (In all honesty, I KNOW she complained about my "meddling" (read: cleaning) and trying to help her--and brother, instead of trying to work WITH me simply kicked me to the curb.) Mother is now very sad as I am only allowed to take her to lunch and not allowed in her apt anymore. I was the only kid who even talked to her--all other sibs are MIA and completely off board.

I wanted to have a better relationship with my mother before she dies. I probably won't get it. Once a week lunch? Maybe, if brother "allows"....I'm sick to death of fighting him over this issue.

I guess I am grieving the fact we never had a healthy relationship, I never felt loved by her and I probably never will. Very sad.

Therapy saves me. My beautiful grandkids save me, my loving kids and their spouses save me.

After mother dies, I wouldn't be surprised if I never talk to some of my sibs again. Heartbreaking.
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Barb: You're awesome. What a wonderful thread.

I have so much to heal from. I got a heavy dose yesterday just how bad off I was from complete exhaustion, sleep deprivation, and abusive sisters. I had left my home 14 months ago to be Mom's live-in caregiver. Mom's passed Easter, April 1. We all cleaned out Mom's house for a fast sale contract and I packed up my stuff and came home a few days ago. My ex stopped by yesterday and his simple comment of "we have some things to discuss" set off a flashback of Sisters' blindsiding with a trauma of crying, shaking, and nausea that scared me. Thanks to BarbBrooklyn nudging in another thread, I see my doctor next week.

The house is a disaster from unloading the UHaul. Don't care. I can barely walk and I'll slowly put things away. Resting often. The locals in my tiny town have welcomed me back. Even folks I hadn't talked with much before this have pulled over as they drove past and welcomed me back and given condolences and showed more concern for my well-being than Sisters ever did. This tiny town is my family of my own choosing.

I need time and rest, though I don't feel I can fully begin to heal until Mom's finances are officially behind me so I can stop waiting for another shoe to drop. That will come when Mom's house sale is final--hopefully next week--and Executor Sister 1 said she'll disperse Mom's estate funds a few weeks after that as she "wants it over with". With that I feel like Mom's finances have come to a conclusion.

If I ever talk with Sisters after that, if they ever mention Mom's finances I will cut them off and tell them to never bring that up again plus I have some choice words for them.
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Barb, your "first born" comment struck a chord with me. Could you share insight on last borns as well? Are there any theories about nonparticipation from a last born child of the family?

Have1Now, I too offer my condolences. Perhaps your participation in this thread will help you through the days to come. I certainly hope so!

You might also read Karsten's threads - the same questions of doing enough are present as well. And as Barb wrote, I also must raise my hand and confess that I still suffer from recriminations that I didn't do enough, yet I couldn't have done more w/o compromising my own health more than it already had been.

I had these same unwelcome thoughts of doing enough for years after my sister died - why didn't I sense that she was withholding the truth of her cancer from us? Why didn't I sense that I should contact her doctor? Why couldn't I realize the medical changes in her condition? It took years before I could finally stop berating myself.

And sadly, you're not alone with getting no support from others; that seems to be fairly common in many families.
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Ihave1now: Oh, honey, I am so sorry for your great loss. You have so much to deal with right now, but I'm relieved you're here. Lean on us. {hug}
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Dear IHave, I'm so very sorry for the loss of your dear mom! You did your best, which is all we can ask of ourselves. (((((Hugs)))))))
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My mom just died this morning. This post came up.” Why?” I feel so bad moving her. I wanted the change, everyone tells me it’s not my fault. I did ask for help, everyone visited in the end, but where were they when it was actually going on.
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My mother, in her 60’s, opted for Transcendental  Meditation! She had her own mantra. I was amazed. Her friend did it and recommended it to her. She continued to do it in times of stress.
How awesome was that? I was very impressed.
I am thinking of doing TM. God knows I can’t do yoga as my body won’t cooperate - too much arthritis.
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What got me thinking about this topic is the recent death of the dad of a poster here. This person felt guilty because they had insisted that the dad be fed, which led to vomiting which the poster felt hastened death. A very similar scenario happened on the day that my mom died, except it was the hospice aide who fed mom.

I realized that we (or at least I) seem to attribute something that we did with causing/hastening/making more painful our parents' death. Anything we did was the "wrong" thing.

I'm realizing that I'm not so powerful; I don't have control over life and death.

I feel guilty for having insisted on hospice (which ended up being for only the last three days of mom's life; she'd been eligible for 2 years--and yet I feel guilty). Because maybe if I had been stronger and could have stomached watching mom in some sort of agony (psychic? physical? It was impossible to tell) or insisted on them xraying her top to toe and figuring out if there was another break somewhere (what, are you crazy? Put her through all of that handling?) or gotten her back to the hospital (my SIL wanted to take her back to the ER because her face was black and blue; I think the ambulance ride alone would have killed her). So I find myself kind of wallowing in unresolved feelings that I pulled the switch marked "mom's exit".

Nothing could be further from the truth, obviously. This over-responsible stuff has ALWAYS been part of my personality (first-born disease, we call it) and I think I just need to get past it.

Work is very stressful and doesn't help. Need to go back to mindfulness meditation I think.
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Dear Barb,

Thank you for starting this thread. I've been thinking along the same lines. You said it perfectly. For as long as I can remember I have felt overly responsible for both my parents. Since my father passed there are still days I torment myself by ruminating about all the mistakes I made with his care.

I have tried grief counselling, joining a support group, paint classes, cooking classes, shopping and MeetUp groups, but nothing feels right to me. I still think "this is the time I would be getting dad coffee," I've been posting here and at other grief forums looking for some perspective and new outlook. But part of me just doesn't know how to truly accept my loss.

I guess all we can do is keep taking it day by day.

I'm very grateful to all of you for your kindness and understanding.
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Before I forget what I want to share... I'm finding that planning my garden, planning for taking ballet lessons (after some good workouts and getting in shape!), for informal concerts at one of the local libraries, starting some new woodworking challenges I've wanted to try for years, getting out my material, yarn and knitting and crochet patterns, are all activities that change my mood and help me move forward.
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Barb, your post is very timely, your observations very poignant with insight. I definitely want to share, but if I spend too much time tonight, I'll be typing for hours.

I am still questioning and analyzing most of what I've done, whether and how I could possibly have done more, wishing I had spent more down time just talking and reminiscing. This inability to communicate with a deceased family member is something that's plagued me since my mother died in 2002.

I like to compare the post death situation to being in emotional isostatic rebound, which I learned about when I took geology. Just as the earth eventually rebounds and returns to its pre-glacial level, before it was compressed from glacial weight, I'm finding myself gradually resolving some issues, while still battling other issues. But I am buoyed by the ability to move forward, albeit at a snail's pace.

Barb, I'm so glad you started this thread. I'm still learning and probably will be adjusting for the remainder of my own life.
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Excellent topic Barb.

I will have to give this some thought.

My caregiving journey was 5 yrs. Ripe with dysfunction. Most of the dysfunction came from my sisters corner.

It’s been 2plus years since my Mom passed. Most days I think I am beyond all that. But, still, I don’t like my patience with some situations. I get too wound up too quickly.

I am still not myself and wonder if I will ever be or react to situations like I think I should.

Time. As time passes my well being has improved and I hope that continues. But, I’m still not where I thought I would be.

I do feel better when I remove myself from my routine, take time and do nice things for myself.

After being so responsible for others lives and end of life situations I still find myself trying to catch up with my life. While trying to catch up with my life, regaining order, structure, routine, I forget to rest, enjoy, recharge.

I am most interested to know how others are finding their way successfully back into their lives.
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