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Hello my fellow caregivers on AC. I just wanted to let you know that my father passed away Feb 11. He had lived with me since 2009 because of his dementia, and he was to go in a nursing home that Saturday. Guess he REALLY didn't want to go to a home.

Though he had been declining food and drink, I was still shocked when it happened. And yet, I'd had a dream that made me think something could happen soon. Anyway, I am wondering how others are/have transitioned from their caregiver roles.

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I'm sorry about your father's death.It does sound like he was ready, though, and that helps most of us. Many people stop eating and drinking when they are ready to let go. Your dream tells me that you were very tuned him to him and a wonderful caregiver.

Now you will have to transition and sometimes it will be hard. Grieving isn't a straight line either - sometimes when you think you're fine, you'll get blindsided by grief. You'll weather it though and go on.

It may help to read this article: https://www.agingcare.com/articles/caregiving-ending-after-death-148071.htm

Time to take care of yourself, now.
Carol
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I'm sorry, Wordy...


I'm still trying to figure that out 3 months after my mom's death. I was her care giver for a long time. It's not that I don't know what I should do. I should find work, get into the real world again, make some friends, go do something enjoyable now and again... but I don't. I can't right now. Mentally, I'm shredded by this whole care giver experience. Maybe I'm extreme, I don't know, but this last decade has done some kind of number on my mind.

I don't want to go anywhere. I want to hole up like a wounded wild animal and lick my wounds awhile. I feel I've come out of one long hellacious war and I need to recover from it. Everything in me is craving solitude. Talking to you guys here is about all I want to do with humanity at this point. I've become very reclusive. It's all I can do to go to church with my neighbor, and I force myself to do that. She wants me to go tonight, and every night this week, for some event, but I don't think so. There's only so much socializing I want to do and it's not very much.

I like being alone now. I need it. I don't know how long I'll be in this mindset, but it won't be forever. It might take a little while and I'll give myself that for what I've lived these last 10 plus years. I don't know exactly how long 'a little while' is going to be. A month, a year, I don't know. I'll come out of this sooner or later, but right now the quiet, and my own company, is enough, is needed. Some of us heal in slow trickles.. I guess the point being, you jump back into life when you're ready. And that's it. Jump back into life. That's what it comes down to after this journey ends.

I plan on going to the bookstore soon. I'm going to spend some time there enjoying the smells of new books combined with that delicious coffee they make. Best smell ever. I might splurge and get one of their big, fat brownies, too. :)

One thing at a time. Personally, I'm going to have to ease back into life.

I'm doing a lot of babbling today... Lots on my mind..
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I'm so sorry about the loss of your father... I understand... I lost my father when I was 18 (he was only 45)... ever since, I've been 'holding' on to my mother who is 86 and presently living with me... Of course, it's not easy, but we can only try our best. We're never ever prepared for the loss of a loved one... When my dad was terminally ill (back then they didn't know how to treat cancer... and, he literally was a guinea pig... on experimental drugs)... He suffered immensely... even then, at 18, I never knew 'death' and never thought he would really die... but, now that I'm older, I'm so grateful that he's not suffering any more and pray he's in heaven with his parents and siblings... My heart is with you... wish I was there to give you a big hug... You're not alone... grief, cry and know your father loved you so much... You are a very special, loving daughter... He would want you to go on with your life and be happy... It'll take time... but, this is the circle of life... Love you... Linda
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h*ll you learn so much in caregiving that it feels like a skill you should be using after your patient is gone.
whether you focus on another elder or not your mind will eventually clear up and youll get back into your own affairs with a pretty incredible determination and effeciency. at the risk of sounding sappy, make decisions that you think your deceased elder would approve of.
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I am sorry for your loss. I don't come on this site often because it's too hard for me to read about Death.

My mom took her first breath in Heaven while in my arms in our home on the Sunday morning of October 6, 2013. It's coming up on 5 months soon and, for me, it has been utterly unbearable. I don't want to talk to anyone. I haven't lifted the blinds to look outside. I still have our Christmas tree up and keep it lit; I have our little pumpkin gourds on the bookshelf where I first placed them when my mom was here with me. I sleep with our dog in my mom's hospital bed that's still in our "living" room. I try to find reprieve in sleep and in going to the funeral masses of strangers. Nothing matters to me anymore except our dog. I cry all the time and just keep getting images of her before her stroke and during the years I took care of her and then the last few weeks of her life and then her death. I don't care to eat or talk to anyone or go anywhere or do anything. My siblings are both married and live out of town with their families. I am devastated by this profound loss in my life. I am trying to go on - one moment at a time but it is truly unbearable for me.
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I'm so sorry for your loss. I'm a huge fan of Hospice before and after death. My mother cared for my dad for six-and-a-half years after he suffered a debilitating stroke. When he died, I encouraged her to get involved in a Hospice Grief Counseling Group. Her response was, "Oh, H***! I've been grieving for six years. I'm done with that!"

She did fine for about six months. And then one day she hit a wall. She started feeling guilty for all of the times she hadn't been as loving, patient and saintly as she wished she could have been. When she told me that she was waking up in the morning feeling the weight and warmth of Dad's body next to her in bed, it freaked me out a little.

I pleaded with her to start attending a grief counseling group. She did, and it was wonderful for both of us, because we learned that what she was experiencing was perfectly normal and natural. There was nothing "freaky" or unusual about her grieving process. She made new friends and was eventually able to give herself permission to enjoy her life.

My husband also attended a Hospice Grief Counseling Group after his first wife died from cancer. He will always remember her and cherish the years they had together, but he's been able to move on. We've had seventeen wonderful years together, and I'm not sure it would have been possible for him to move on without the help and support of people who understand the grief process.
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It's so good to read your responses. Thanks Heart2Heart for your empathetic and understanding reply. It soothed me.

Don't worry wamnanealz, I knew what you meant. Captain, your advice really hit home. Thanks!

So far I have responded "appropriately." I know Dad's in a better place and I am relieved that he and I did not go through the totally bed-ridden stage that is often at the end of dementia-related diseases. I've gotten out with friends and family and am job-searching. But when home alone, I do feel kind of lost. Like my purpose is gone. Also, in a way I'm not sure how to grieve. I feel like I should be so happy to be able to go anywhere or do whatever with this new-found freedom, yet I feel as though I'm moving through "molasses in January," and I'm not sure what I want to do next.

Well, I do have to get a job . . .!

Monday, I'm so sorry that this loss is so unbearable for you. It must be that caring for her was your life purpose, and that must magnify the loss and grief. My heart goes out to you. The devotion you showed your mother is still within you and one day, when you can, you will be able to share that gift with someone else in some way. People need us. And we need them.

Caregivers understand other caregivers like no one else can.
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I went through a lot too. Being on here where my experiences still help others helps me a lot. The grief counseling things they had at my moms hospice were a little more geared to spouses but not bad for me either. I had those dreams all the time with one or both parents still alive and well or alive and needing me again and how could I not have been back to see them since everything happened... And dreams of stuff I forgot to do, but I have had that sort of thing all my life.

I think I kept doing the minimum of what needed done at work for the longest time, just now getting back to a few more academic pursuits. It was a while before I put up the things I got from my parents house and there are stroll a couple projects to be done with that. I have come a long way emotionally and I'm very slowly finding more peace and understanding, but it's only been three years and I know there is more. Will I ever enjoy without guilt, those aspects of caregiving that I will not miss being over, and the feeling of finally being on my own two feet and living my own life? Well, I'm getting there...

I did some writing too, shared with a hospice grief group leader and never got any feedback at all, which was kind of devastating. But I have kept all that in my Dropbox to go back to later.


Here is a prayer for peace and joy to begin to return to you with the spring this year, especially Monday as well as Wordy2shoes!
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My own mother died when I was 30 after suffering horribly for 10 months at home with breast cancer. She died in my arms. I had horrible nightmares for about 18 months every single night. If I woke up and fell back to sleep, they would start all over again. Be very very gentle with yourself. Take baby steps to get back into this world. I would drive and find myself miles from home without any recollection of going through toll booths or stopping for red lights. What helped at first was sitting on the back porch at sunset and sipping a cup of tea, listening to the ducks and geese on the pond quacking for the best spots before nightfall. The things my mother loved the most triggered off the worst longing and grief for her. I still have times when I feel like I have been skinned alive and its been 34 years but gradually, they are getting better. I am so sorry for your loss.
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I'm sorry for your loss, and relieved for him that your father was spared the worst of the end stages of dementia. What next is something it's impossible to see for those of us who are still in this seemingly infinite space where you know that your parent will not have too long in this world but you have no idea what will happen or when. You've brought up an important point to think about, what we can do to be prepared as far as possible (I'm not sure you can do much, in advance), and thank you for that.

You seem to be managing brilliantly, taking positive steps. Don't lose touch with us - we need the guidance! Best of luck with your job search.
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