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My Mom passed 3 months ago. I can’t offer any help because I am struggling with this right now. I can only tell my feelings.

I was full-time 24/7 caregiver for my mother for 4 ½ years. I took care of her needs daily for 17 years previous to that. She had a massive stroke in July 2014 which resulted in brain damage, memory loss, and severe dementia. She no longer acknowledged me as her son. She needed assistance with everything she did. She spent all her time in bed except for going to the bathroom. Working through all the confusion, agitation, arguing, and fighting was very stressful. Many times I thought I couldn’t stand it one more minute. There were also good times when we talked and laughed and her old personality came through, if just momentarily.

When I was caregiving I thought I had a clear vision of what I wanted my future life to be like. I thought I had it all figured out. I had already suffered the loss of my (real)Mom. I was going through anticipatory loss. Since Mom died I really don’t know. I feel like I don’t know anything; what life is about, what my life should be about, how to reinvent my life. It is all still very new. I never thought I would feel like this. I have been through 6 weeks of grief support. This helped me very much.

I had my Mom for 92 ½ years, but when you love someone it is never enough. I miss her a lot and I believe I always will. She taught me so much; patience, compassion, empathy. Taking care of my Mom is the most important thing I’ve ever done. As difficult as it was, I would do it again in a heartbeat. I still feel her presence. She speaks to me and says many of the things she used to say. Sometimes her spirit returns to remind me of something funny we said or did together to make me laugh. I seem to miss the hugs the most. She will always be with me.
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Invisible Apr 2019
I think we are in the same place.
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Oh, and yes, I miss my mom very much and lately the pain of not being able to see her, talk to her, and touch her hand has been worse. I don't know why the grief returned as hard as it has after 3 years. I still have issues with how others treated the situation and lack of help during that time, especially when I lost sight in one eye due to a spontaneous retinal detachment that happened to me while she was bedridden. Other problems and events in life can bring on feelings of grief and depression, I guess.
For everyone that has experienced a loss of a loved one they were caring for, you are all in my thoughts and prayers. Day at a time.
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NeedHelpWithMom Apr 2019
Thanks Katie.

Grief comes in waves. You are being knocked down by that wave at the moment. Hugs!
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Mom died from Alzheimer's in 2016. We had moved her and my dad to a house next door to ours after she got to be too much for dad to handle alone. I shared the caregiving chores with dad for a short 9 months before she passed...with her, the disease progression was mercifully quick. I am not afraid to state that after watching this bright, creative, determined woman deteriorate so quickly, we were all relieved when she passed.

I loved my mother, and I'm sure that she loved me, but our relationship had always been rather complicated. She was an "alpha woman", and I am the same. I believe she felt threatened by my strength, and frustrated that I neither relied on her to direct my life, nor did I succumb to her demanding personality. Not that we ever really fought...I was just confident enough to do my own thing in life without reference to her opinions if they conflicted with mine. My younger sister bent over backward trying to gain mom's approval, and mom loved that. She was, in fact, very controlling.

What I'm getting to is, it seems that whatever sort of relationship you had with your parent will intensify after they are gone. I'm still sorting out various complicated feelings about my mother, and coming to grips with the fact that I can no longer resolve issues with her face-to-face. That's okay...I know I will eventually work it all out and I will take all the time I need to do so.

Bottom line is, we all need time to sort things out after the death of a parent, and there is really no "time limit" involved. It could take weeks, months, or years. One of mom's hospice care people told me that it wasn't uncommon for the loss of a parent to really hit home two or three years after they're gone. I guess we shouldn't expect the same experience as someone else...and we shouldn't be afraid to ask for help if we find ourselves headed in a direction we aren't comfortable with. But do give yourself time, allow yourself to grieve, and cut yourself a lot of slack. But remember that your ultimate goal is to get back to your life and feel good about it. Good luck, and God bless.
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NeedHelpWithMom Apr 2019
I found your answer very interesting. So much to think about. Thanks for your honesty and genuine reply. Appreciate it. Hugs!
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My mom died in 2014 and for the first three months after she died i felt i had to live with my dad and only go home on the weekends. I lived with them for the last two months before she died and it was more emotional I felt I had to be there not only for my dad but also to feel closer to my mom even though in the end she didnt even know who i was.

Now my dad is sick and I have again moved myself into his home and taking care of him. Sometimes it is hard to separate his life from my life. I am pretty much doing this on my own as my brother passed a year ago. I do take time out once every other week and go to my house , but all i really want to do is just go home and sleep.
I completely understand how hard it is looking forward to things. I do leave abpout every other day and go to the store just to get out of the house and now that it is warmer I can take the dogs for walks.
I look at it like this one day at a time and breathe in and breathe out.
I wish you the best and try to just do what you can do both emotionally and physically.My prayers are with you.
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NeedHelpWithMom Apr 2019
Yeah, the emotions are really tough. Thanks for sharing. Hugs!
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Mother passed in 2004 and Dad just passed a month ago. My daily mission was to prop him up after she died. I didn't think I would be doing it for so long. At first I resented losing my independence but then I realized it was a gift to me. Got to know my father in a different way and I am glad I could be there for him. No guilt. Yes, the idea of losing him was scary but inevitable. His needs were my first priority for so long. I was very tired. Had stopped seeing friends or planning activities. Now I have to find the "new normal" just like we did when Mom died. Frankly, I am allowing myself time to drift. There were so many things that needed to be done immediately after Dad's death. I didn't have time to grieve but now I do. Hospice has extended the offer of grief support for family up to 13 months. They must know that it takes that kind of time to adjust. You grieve for all the losses you have experienced as a caregiver as well as the person you lost. I will be grieving finally for my mother as well. Then I think I may re-invent my life, as I can't go back. I'm sure you have a whole other dynamic with a husband and children.
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NeedHelpWithMom Apr 2019
We lose ourselves in their lives. This answer tells it all. Thanks so much. Hugs!
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Need, mym and Invisible: I do not plan to leave. Thanks.
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You face the fact that you loved your mother but that this relationship won't last forever - it is a fact of life. Be grateful that you had someone special and think of those good times. Then start planning for new adventures and outlets for you and really concentrate on these new things. And when you think of your mother, smile and say thank you that you had her. You must do this because it is the only way you will survive. Remember, something that was is better than never having had it. You will be fine. May peace be with you.
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NeedHelpWithMom Apr 2019
Thanks Riley,

Your answer makes sense to me.
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Honestly I think you’re looking for reassurances that you won’t feel guilty after mom passes.....because then you will have the freedom to live your life on your terms. And there is nothing wrong with that.....especially since you have devoted so much of yourself into caring for her. There should be no misgivings about your dream coming true to enjoy your life to it’s fullest. You have gone above and beyond (which most seem to do on this site) and more than deserve whatever good things life offers you. I wish only the best for you....embrace your future.....and in the meantime please take care of yourself.....burnout can be insidious.
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NeedHelpWithMom Apr 2019
Thanks Abby,

I now have 8 hours of respite care from Council on Aging. Not a lot but I am grateful for something. Something is better than nothing, right. They said they will bathe mom while here. So if I split it up into 4 hour slots then I will only have to bathe mom every other week. Yay!

They will also change sheets, some food prep, that kind of stuff.

They start Thursday afternoon. Yay, I can relax for a few hours. I checked with the agency that they use for sitting services and they do drug screening and background check. They try to send the same person as well. That doesn’t matter if they use different people. Home health used different people and it didn’t bother mom. Might bother some people though.
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You know it is interesting how many stay here long after loosing their loved ones. It’s great for us to be able to share their experiences.

I don’t think I would stay though. Not because I haven’t enjoyed it or found it useful. Not because I wouldn’t want to help others. I would want to close this chapter of the book. It would be painful for me to rehash everything.

Supposed to be cathartic but not always for everyone about everything. Sometimes it is better to let it go if it isn’t helpful.
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pronker Apr 2019
That is certainly understandable to wish to move on. The book has other chapters to read and be written; I kept a detailed online journal of Mom's condition, treatment, and decisions to be made and when she passed, I closed that chapter. I've looked at the tag on the journal perhaps four times in four years and every year on her birthday, I write her a letter on the journal. And then I close the tag again.
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I took care of a friend that I had known for 15 years. Her kids hired me when dementia hit. She was really rambunctious, challenging, and imaginative with her mind games. I frequently felt that I was being outsmarted by an 84 year old with dementia. I ended up working crazy hours, and I felt like I was reinventing the wheel every other day. Even though I am not family, and I was paid, when she died I was often at a complete loss as to what to do with my time. I felt like I was in slow motion, and I didn’t know how to choose what to do after barely taking time to sleep or breath for so long. Two months have passed, and It has gotten better. Some days I am still practically comatose. I think that we bury our own needs and desires for so long, that it takes a good while to process through such a complicated and psychologically fraught change. It is akin to running, running, running and then being stopped very suddenly.
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NeedHelpWithMom Apr 2019
Thanks for sharing. Appreciate it. Helps to know that we aren’t alone.
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I think everybody's situation is going to be different depending on the circumstances. I do feel kind of lost since my MIL died a couple of months ago. One factor is probably the geographical and social isolation. I moved here almost ten years ago and have no family of my own within a thousand miles. It's a small, old, tightly-knit community where everyone is either related or connected by marriage, and if you weren't born here it's hard to fit in. With her gone, I just feel very much at loose ends. She had her circle of friends and I wasn't a part of them. I have been a live-in CG since 2000 for various clients but have health issues of my own now. Now it's like I have no purpose and I don't quite know what to do with myself. I mean, of course there are things to DO, I can watch TV, putz about in the garden, talk to my chickens, do laundry, cook, clean, crochet, etc., things I've always done ... but there is no one to talk to, no one to do them WITH. It's dead boring, lonely and sad. I just miss her.
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NeedHelpWithMom Apr 2019
Desert,

It’s just difficult. Isn’t it? I understand. I feel isolated also but my isolation comes from being a ‘full time caregiver.’
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NeedHelp - I guess that's what I was trying to say.... I don't have a life of my own because for so long that's all I've done, is take care of someone. In fact, I used to say I was born married, because I have a twin brother! Then of course I married young and raised kuds. After that I started doing the live-in care- giving, and here I am at 65. Now I don't have anyone to take care of and I don't know what to do with myself. I haven't built my own circle of friends, at least none that are nearby. I haven't built a life separate from care-giving. I don't have hobbies that I can do any more. I think that is what you are saying. Is that right? Well, hopefully it's not too late to start, for either of us! Hmm. Shall we take up chess? Or sky-diving? Maybe we should flip a coin! :-D
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