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Its been 9 months since my father passed away and the thing that still bothers me the most is the lack of consideration and help from my siblings. I know I didn't have to keep dad at home, but I would have loved some validation and acknowledgment from my siblings. Even a how are you? once in awhile would have made a difference. Why do we become the invisibles in the family as the caregiver?
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Reply to cdnreader
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The thing that bothers me most is daughters who not only won't help, but make things worse. They criticize my caregiving skills, my choice of doctors, and my decision to keep my wife at home. They probably are the ones who filed an anonymous complaint with Adult Protective Services that I abuse my wife and they certainly are encouraging the APS investigator. They interfere at the Adult Day Care where I take my wife but they will not lift a finger to help, to call her, to visit , In fact they say they are angry because I will not do what they want. It would be nice to have some respite care or even a break mto attend a caregivers meeting but they are too self centered and angry at me to even do that. So losing .the wife I have loved for six decades is bad enough but losing our entire family an even worse having them make things more difficult is almost more than I can take.
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Reply to Genesis1
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Though my 98 yr old Dad lived with me for 3 1/2 years until January, I had to place him in Assisted Care due to a serious surgery of mine. If not for the surgery, I would probably still be caring for him at my home, much to the dismay of my family and friends who said I had become joyless. He is now declining quickly since January. The most difficult thing now for me is the guilt if I don't go and see him everyday AND the sad helpless feelings when I do. My other guilt stems from thinking perhaps he would be better if he were still with me.
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Reply to Zaisie
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Zaisie, it was a wake up call when I heard through the family grapevine that I was always so angry and negative, I had thought I left those emotions behind when I was in the world outside of caregiving. My mom has also declined physically since being in the NH (13 weeks, yes I am counting). I wondered if she might just give up once she had to move there, but her will to live is as strong as ever even though her body is failing. I fear she will fight to go on until her very last breath.
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Cwillie,
You have endured a mostly negative situation with your Mom for a long time.
Here is understanding for what you are going through. Burnout is a serious thing.

You have a very good brain, are intelligent and insightful. You have experiences to share that are valuable, that will help someone.

One can turn their thinking to positive, to achieve a balance in their lives. However, please never go so far to the positive outlook that I will have to send you a bucket of sand to stick your head in, so that reality can be denied to exist.

Additionally, I have known you to become lighter, more positive over the past year, with a good sense of humor. There is a life ahead of you with all sorts of positives going to happen for you, and that will be your experience-life changing experiences. I am sure.
I am positive!
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Reply to Sendhelp
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Here Here Send, and Cwillie, So True! You have very important story to tell, that others here have and will learn from!

Youve done the right thing, It will improve, I promise!

You Take Care!
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Reply to staceyb
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Omg norecess the same what I feel I was never close with mom growing up. And at times I'm so differ than her and i think how did it end up like this but will still  take care of her.
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Reply to stressedout9603
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we do not really know what we are dealing with till we read from this site ---it helps...
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Reply to meridianav
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Agree 100 percent , Meridianav
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Reply to Erinm60
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Old thread, but here goes: Only one thing? I could give you a list as long as my arm! But the worst is having to tell fiblets to Alzheimer's mom.
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Reply to CantDance
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Last weekend my seven year old grandson was playing in a soccer tournament that was a 2 hour drive away. My son who is the coach and grandson wanted both of us to attend. My husband was diagnosed with dementia 3 years ago. He is 68 and I am 65. I am the primary caregiver. I was so worn out from the drive, packing and unpacking his walker, cooler and chair. I don't know if I will try that again. I love watching the games. I guess you noticed that I had no help.
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Reply to oleput
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What bothers me the most about care giving is the loss of self. Life and Everything even when or if I can eat, down to my showers and bathroom time revolves around my mother.
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Reply to KicksandGiggles
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Skipping some my medical and/or dental needs and appointments to be available for the person I am caring for.
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Reply to Ricky6
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My Forum Friends,

Yes, we really don't know how bumpy this roller coaster ride will be until we are on it! We just stay on & cope, doing the best we can. I remember saying, "I won't do that," in regards to yukky jobs, well guess what, been there/done that. Instincts take over & it gets done.

It sounds like some of you amazing pals who caregive ? your decisions, wondering the what ifs of it all. I hear some guilt & you shouldn't be so hard on you. It's because you care & have an abundance of empathy & love that you ?, you probably always will. It's not a negative if you had to make a decision. Remember you're a caregiver, you've been making good & right ones & probably for a long time.

Try & make time for you, somehow/someway. You have to take care of you. I know it's a challenge to find the right day program or person to give you a break, but make it a priority.

Blessings 🌸
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Reply to Blessings4Ever
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Well, "this morning" what bothers me the most is...after spending the day with mom is watching her life slowly coming to an end. My once vibrant, best friend "mom" still tries to be that woman she used to be but her body/mind poops out quickly. 😢

I'm 55 but feel like a child losing my mom bits at a time and I can't stop it.😭
This afternoon or an hour or two, who knows, I'll be irritated cause she's wanting something from me again. Maybe that's what bothers me the most...the constant back n forth of emotions!!! 😖🙄😬😜
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Reply to Bella7
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Great post Bella7!

I have to agree. There are times when my emotions are all over the place.

Caregiving is not easy, no matter our love & devotion. Blessings 🌸
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Reply to Blessings4Ever
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Blessings , probably because we had no experience in this. As a first time mom, you don't either. But it's so different. Or is it??? It is. Babies are so dependent , demanding , adorabale. And you adore them. You do for them what seems the impossible. At least with mine , who was kicked out of the nursery at 4 hours old because she was the "fussy one" keeping all the other babies up and she was at my side from that point on. BUT , an aging , dependent , confused parent. Wow. How hard.  We all try our best  and  we got to remember that 
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Reply to Erinm60
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For me, the only surviving family caring for 88 yr old alcoholic dad with vascular dementia, the rollercoaster up and down of wanting this over and the realization thst when it is the dad I love so much will be gone.
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Reply to Janny57
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Erinm60, beautiful post, you & your baby girl bonding 4 hours in, that was a start of a great forever! We love any kind of babies it seems & it doesn't get any better!

It is a totally different game taking care of any adult versus a baby. Put in health concerns & that's why it's called a "roller coaster ride," "new normal," whatever. Everyone's emotions & feelings are tested. Everybody is stressed & sleep deprived. We all question just about everything we do & feel. But, you're right, we do the best we can, we are only human.

We got this Caregivers! Blessings 🌸
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Reply to Blessings4Ever
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Thank you Blessings. Yes she's my miracle baby. 10 years to finally have her. I am so lucky she was born. She is the light of my life. Care giving. Yes. We got to keep going and know we are doing all and the best we can at any given minute even when we feel we can't give any more. Hugs
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Reply to Erinm60
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Mother-in-law? Does she not have any children of her own?
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Reply to corinna
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Dealing with a 14 year old it seems..... Dad yesterday "Remember when I told you my friend was going to drop off his guns for us to store?" Me. "No, I think I would remember that conversation", Him, "well he is in the driveway"..... Now before you all get uppity, I am a gun guy (sportsmen, target shooting all under lock and key). I'm like "why"? "He had to go into assisted living and cant take them and none of his kids want them". So after I peeled my wife off the ceiling and she yelled at him. I finally said OK temporary or I sell them. "Its only a couple of target guns"... turns out to be 7. So, I told him, "tell your friends it's temporary or they will be sold. "He says you can sell them". So I had them appraised yesterday, gave him the numbers and they are going out the door ASAP. What the heck, I have no room for my own stuff and now he is bring other peoples crap in my house! AARRGHHHH! tired of being the caregiver for everyone. His kids dont want to deal with it, why do I? Oh, and I am not doing this for free, he will give me part of the proceeds (All done legally through a broker signed papers). This is not like I am storing an apple pie.... He offers me to barbecue for his lodge, my daughter to do things at church, like we are all his lackeys..... I tired of saying NO all the time!
What the Heck? He is now bringing other peoples crap in my house?
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Reply to tgengine
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Dear Readers,
What bothers me the most has to be that it will not be over until my hubby dies, and that's not the pot of gold at the end of the rainbow I'm looking for. It's tough never getting away, even when I'm away, and it's tough watching my love slowly, relentlessly, decline. Our only hope is to find the humor in the journey.
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Reply to Crankycaregiver
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Feeling trapped. My husband has Alzheimer's and I am trying to make the best of it. He is mean most of the time. Unless I am willing to throw my hands up and walk out there is not much else I can do.
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Reply to oleput
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My heart goes out to you all. I know we all do the best we can, but being in the trenches every day does take a toll.

I wanted to be the caring and dutiful daughter but it was hard. There was no acknowledgement and validation and no offer of help from siblings. And now that my dad has passed, dealing with the grief has been a thousand times worse. If I could go back, I wish I would have talked more with my dad. I regret my frustrations and lost of patience. I failed to realize the end of the caring journey would be worst than the journey itself. I have no peace yet.
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Reply to cdnreader
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So sorry cdnreader. Hope you find peace.
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Reply to Erinm60
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Cdnreader, Try & not be too hard on yourself. Caregiving is no picnic & not for sissies. You have to be strong, as well as loving & caring, to take on all the duties & responsibilities of caring for a loved one. 

We are 😴 tired. Emotions go up & down. I believe it's only natural to look back & nitpick, to dwell on just about everything. Please try & remember all you did for your dad, alone. Think about all the tasks you were doing for him & if there was a free moment, there was still you; you had to eat, shower, rest. Recharge yourself for the next go round.

You are grieving & what you are feeling is part of the process.  Now start taking time to recuperate yourself, body & mind.  Write in a journal, take a meditation or yoga class.  Seek a professional to just talk it out.  Use prayers & faith.

There are all kinds of grief for us caregivers during & after.  Take time, baby steps.  You were, are, a loving daughter.

Blessings 🌸
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Reply to Blessings4Ever
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Dear Erinm60 and Blessings4Ever,

Thank you for your kind replies. Blessing4Ever, thank you for your compassion and understanding. I hear that a lot. I do try to think about the years I was helping before my dad's stroke, but things escalated from there. I know none of us are perfect. Grief has been like a wave and I am having one of those days, where I can't help but berate myself for my failings. I wish I could embrace change and this idea that nothing can ever be permanent. Thank you so much for taking the time to reply and for your comforting words. It means a lot.
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Reply to cdnreader
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Cdnreader. I berate myself hourly. I want to make my mothers life as good as I can. But she's here 24 hours a day sitting on a couch in my family room. Drives me nuts. I wish she was her old self. Pretty , organized. Non intrusive. Well she's not. I'm an only child. It is all on me. Sorry for whining. But I'm sure you did the best you could every day for your dad. And I'm trying to do the same for my mother. God Bless and I hope you sleep well
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Reply to Erinm60
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Dear Erinm60,

Thank you for telling me more. I know you are doing the best for your mom. It sure isn't easy to see our once independent parents get to this stage of life. And its not easy being the adult child taking on this daily care.

Thank you so much for your understanding and kind words. They are much appreciated. Its just one of those days, where I look around the house and wish my dad was still sitting there watching TV, but he's not.
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