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Aunty had a third stroke about 3 weeks ago. She is still in the hospital and will be discharged in four days. It was a mini-stroke that was only picked up when my cousin the nurse noticed that Aunty's speech was slurred and she called the doctor. She was still recovering from the hip surgery. She was allowed to go to 11-year-old's graduation last week, and tomorrow is his big party that his parents are throwing for him to celebrate passing to middle school. Hospital is letting her go, but we have to bring her back by a certain time. She was unhappy about having to do therapy before leaving for the party but I said that at least they are letting her go, and she agreed. Now when she comes back home, everything starts all over again. ...the physical therapy, occupational therapy, and I think speech therapy and nursing services too.I was beginning to ease up on some of my caregiving duties, but now I have to increase too; I have to stay home to let the therapists and nurses in, take care of her, etc. I'm not sure about 11-year old's plans for the summer; i.e., his mom is looking into some camps for him but I don't know if I am involved in any of the babysitting, picking up/dropping off, etc. or watching his baby brother. , POA cousin is helping with transportation and running errands, so there is a sense of obligation there with the kids.I was planning on visiting my older sister who lives out of town this summer, but I guess that's out now. I also had a regular summer volunteer job at a day camp that I loved. ..can't do that either. I have to wait and see what happens with the therapists' schedules and work around them.

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I think that a workable analogy for our lives as caregivers is - it is similar to being in jail or a POW in war -we have lost our freedom and it feels like we have lost our lives. The people we care for drain us emotionally.

I look at it like I am in jail, and I don't know when I will get out - but I WILL - when my loved one goes to heaven. So I look forward to my freedom some day, and I try to prepare for it. I exercise, eat right, stay healthy, and I am working on preparing for a new career that will be only possible when my Mother is gone.

In the meantime, I do the best I can. I take time out for myself, I am honest with myself and my Mom. I draw boundaries. I just keep on keeping on. Someday I will be free again, and in the meantime, I chose to do this so I must take responsibility for the situation I find myself in. I do what I can to improve it, and I ignore or down play what I cannot change. Accept what I cannot change, as the serenity prayer says.
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Oh, Gospelgirl, I really do believe that every one of us asks ourselves this question.

I ask myself when my life will begin, but more earnestly, what will be left of me when this is over? As I am caregiving, I am getting older. I am getting stiff and sore and lame. So far, I am holding it together mentally but physically, I can feel myself getting older. So, if and when I am ever "free," what will I be able to enjoy of life? Travel? That would be nice but I am beginning to doubt it.

You need to find people to relieve you now!!!! I got my courage up this year and asked my husband's son to stay with him while I take my grandchildren on a trip. He was happy to do it. He is coming to PA from CA for one week. Isn't that nice? I am very grateful to him.

Does Auntie have relatives who can relieve you?
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How old is Aunty? I totally agree with Salisbury. Get help NOW! Taking my mom in was the worst mistake I've ever made. I know you feel a responsibility to care for Aunty, but your first responsibility is your own health. I've figured that out after only 6 months of this living hell, and I'm taking steps to remedy my situation. I suggest you do the same. When I took my mom in, others told me it would drain the life right out of me, and that mom would probably outlive me because of it. I can now see that is happening. I'm not going to let that happen. It's not worth last third (or more) of my life to help with the poor quality last few years of someone else's. It's not selfish. It's self-preservation. You have to do what's best for your FIRST. You're no good to anyone if you're not good to yourself first.
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You get your life back to yourself when you decide to get it back. No one is holding a gun to your head. If the duties you have already agreed to are too much for you, then tell people. Communicate your feelings to them. Have the POA cousin hire someone who can take over while you get respite. Everyone doing caregiving deserves a break. Sounds like you are at that point!
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You get yr life back when the person you are caring for dies. Until then you suffer, feel the life being sucked out of you, try to make the person you are caring for a priority while your life falls apart. Because while everyone says get a social worker or community assistance all of those agencies eventually go away and you are once again stuck caring and caring and wishing for your life. Trust me.. I'm living it solo. No one really helps you
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Does she have any kids? Not sure why you've become primary caregiver because it's forever life changing and life robbing. I too have been caring for my mother for almost 12 years. I've put a lock box outside the door and PT and OT have the combination to get in so I don't have to be there more than I already am. Being an only child, I have no one who can help but as a niece, there must be others who can step up. The bottom line is this: what will be easier to live with in the long run, caregiving now (incredibly difficult as it is) or placing her in a skilled facility and potentially living with guilt for the rest of your life. And for those of you who say guilt is self inflicted, you're absolutely right. Aren't most things in our lives self inflicted? Sending you strength and peace. You're not alone. Many of us are sacrificing what's left of our "declining years" with no visible light at the end of the tunnel. I'm assuming you have parents that you may eventually have caregiving responsibilities for. Save your strength, you're going to need it. Hand this baton to someone else.
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My son graduated college out of state in May and accepted a job in yet another state. I so wanted to help him move and help get his new apartment set up. It is so hard to leave my parents. I made many arrangements and lists and I went. Sis was great, she even sent me pix of her visits to parents to reassure me! Bless her heart. The minute I got away a lightness came over me that was heavenly. I realize now how important it is to take a break. It was hard work moving my son, but the change in routine for 4 days was like a tonic!
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I was wondering how things were going with you now Gospelgirl. If you want your life back you will have to assert yourself and take it! I think you are now seeing the reality of some of the advice given in previous posts, Auntie's health will continue to decline and her needs will continue to increase. Unless you are willing to eventually become her hands on 24/7 caregiver you should begin to extract yourself from your family obligations NOW. The longer you delay, the more enmeshed you will become and the harder it will be to make the change.

As for the babysitting, it was disingenuous of the family to expect that Auntie was going to be able to handle that just as she always had done, they knew perfectly well in reality it was you doing the caregiving there, not Auntie. Just give them the dates you are going to be away and tell them to make other arrangements. There should be lots of high school age kids available who would like to pick up a few dollars this summer.
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Have you looked into home hospice? We are just signing up and Medicare pays for all. Check out http://www.Aseracare.com to see if it available in your area. I did not know it existed and I am more hopeful tat some of the caregiving stress will lessen with their services. My MIL has dementia and my days are not my own. My blood pressure is out of wack and my Dr is adding medicine for blood pressure and anxiety. My health is suffering so I am hoping this helps
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Gospelgirl223, I had no help either. So I ended up putting Mom in a nursing home. Being the primary caregiver does not end there. If it's only you, you will still find yourself spending a lot of your free time there- literally or figuratively. Literally, you will actually be there to keep an eye on the staff ( possible elder neglect, bed sores, lazy staff, etc.). Or Figuratively, your worries and concerns will not stop just because you are not there. Your mind will be there....even when you are not. Find someone to rotate EVERYTHING with you for whichever choice you make. It will definitely be a big help and gives you SOME of your life back.
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