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I'm sure this question has been asked before so please forgive me if I reiterate--

But what are some of the hardest things you find about caregiving?

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Waching my Dad die before my eyes, just dwindle away. Some days I sit watching to see if he is breathing. Is this the day he dies? Then he gets up. Thje emotional roller coaster is the hardest
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I'm finding the hardest thing is not having lives of our own anymore. My husband and I met later in our lives and were used to being able to come and go. Visits with others, dinners out, day trips, etc. We used to go away a few weekends a year. Nothing extravagant, but now that seems to be over. We have few family members we can ask to stay with my mom, and we live in a rural area with few resources available.
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I think now its throwing tantrums in public i dont know what to do about this i just stand there frozen hoping nobody is watching? i try not to challenge her but when shes got wads of money sticking out of her pocket for all to see I say be careful and she goes mad "im not an idiot". Yep i think this is the hardest but im learning boy do you learn how to not anger them in public! I am just waiting for this "anger stage" to cool down and am hoping she may become more passive i do hope so!
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Yes cellytron so true! the other night she went mad because her dinner wasnt ready in time i mean really lost it (ok so shes diabetic and low bloods etc) i have never seen her so mad it was scary stuff! then the next morning im still shaking in my boots and shes in great form dosnt remember a thing? wow it sure throws you! but its a bit better than her hanging on to those moods for days like last year now its roughly every second day or so! ive learnt to not let it get to me as much now as now i know more about this disease and i have good hiding places!!!
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The hardest thing for me is the verbal abuse. From my sister the POA, from my husband who has dementia, from my mother who has dementia. The isolation. The no let up. Always on, 24/7 even if mom is in the NH. No vacations.
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The unpredictability. I try to recharge my batteries on her good days, but then her bad days throw me for such a loop that I'm just miserable/useless for a good week or so afterward.
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The verbal abuse and manipulation to get their way. I do so much for them and yet I am the one getting all the mean comments and deep cut downs
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Oh Jessie! I Hear ya! (pun intended) What? Huh? say that again. WHAT????
It is exhausting!
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Jessie, I have similar so-called conversations with my Mom who is still as sharp as a tack but it is her hearing that has almost disappeared. I am constantly repeating, or changing the sentence around, or creating a new shorter sentence using different words.

Mom will pick up one or two words from the sentence and run with that, and I keep my fingers crossed I get my answer from what she is saying. I am starting to learn what one or two words she will identify, such as "groceries Tuesday" which she easily understands.

I know we expect such conversations from small children, especially "why?" this or "why?" that. But we don't expect it from an adult we have known most of our life, thus the frustration.
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I had to revisit this question today. While many things are challenging, the absolute hardest thing for me is having to repeat everything I say. Many people can say you have to have patience and you have to remember she's old. But I have a feeling these people don't live it.

I can listen to her say the same things. That doesn't bother me. I can go through the same routines every day without much trouble. However, saying things over and over again gets on my last nerve. It is the thing that brings me closest to snapping.

A typical conversation:
Me: Good morning.
Her: Huh?
Me: Good morning.
Her: Wha...
Me: I said good morning.
Her: I heard you. I don't know why I said huh.
Me: Probably to drive me crazy.
Her: Huh?
...

I don't think humans were designed to deal with this type of frustration.
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Irishboy i think you sound amazing and those with foolish comments are simply that. .. foolish. At least you can live with yourself and the decisions you've made. You've earned your 'you' time to mourn, rest or whatever. I pity those that speak out of turn. It makes you wonder if they could handle everything you have. So just be proud and give yourself the time you need to adjust and heal. All the best. ..
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Everyone has included the things that are hardest for me. The biggest thing is that so much is wrong and I can't fix it. Life has lost any organization and no matter how hard I try I can't pull it back together. Sometimes when her doctor or other people say, why don't you do this or that, I just want to say that I'm doing all I can, so leave me alone. Get the pressure off that somehow I can magically cure her. She's old.

Another bad thing is I have lost direction in my own life. I've had to start tapping into retirement savings. I'm glad that I don't have to pay housing, but staying too upset to work well is starting to drain my finances.

My golden years have turned bronze. But I have to add the upside. I've learned so much about life and the spirit of people in the last five years. It is like I woke up from a long sleep. Maybe others will know what I'm meaning about this.
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Everything that has been listed here. The comment about the end coming was very poignant. Because as hard as we try, we all know what is coming.

My caregiving days are now done, with both parents passing within a year of each other recently.

Now I get the question "so have you found a job yet?", I had a job, the hardest job ever the last 5 yrs. I have the means to take sometime for myself before looking for work and get snarky comments about it.

I think that is the hardest thing, people who have not done hands on caregiving have no clue, sure you might get a "you're wonderful for doing that", but the fact that you took care of an elderly parent, moved across the country to do it, and ended up giving up your job to do so, doesn't seem to "register" with some people. You're just supposed to flip a switch and return to "normal". No grieving or adjustment period.
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I have very difficult siblings that are rigid, inflexible, and selfish. They won't lift a finger to help our parents, and I truly do not know how they can feel good about themselves. They have pretty much lost the relationship with me as a sister.
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Watching them fail and get weak and, at least in my mom's case, that they realize they are failing. It's so hard to watch. I can only imagine how my mom feels.

I try to talk with her about it, and reassure her I will always be there for her, but it IS her own journey. I can only do so much. My brother is here as a Faith person, but it's annoying us. We all come to Christ in our own fashion if that is your faith.

It's his way or the highway, I'm not that person nor is my mom.

I longed for my brother to come home and give us a break.

Just too weird and stressful.

I realize now that my mom's dying will be totally on my plate. That's very stressful, probably the worst thing. I love her but since my dad died it's been a few hard years.

Maybe we'll have a couple of sane years before we descend into dementia as well.

It all sucks, to be quite frank.

It's been difficult with his visit.
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Also, what was the norm back in my parents' generation may not be the norm now.

We all want what is best as our parents age, and each of us need to find what is a win-win situation that will work out for both parent and grown child where everyone is happy.
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Knowing it's the beginning of the end:(
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lol , book . blameshifting when something goes wrong .. wont work for poa . cuz has steadily tried to point at me as ednas primary when aps would strongarm her to perform . aps would forcefully inform her each time that she was accountable by law and needed to get that thru her head ..
my hardest struggle during end of life caregiving was the sad reality that i couldnt make my failing mom happy or healthy or change the realization that she was facing death .. she told me a couple of times that sh*t gets real when its one own dog hide facing the unknown .. all i could do was somberly let her vent herself and ease the subject back to the present in as casual of manner as possible .
losing your own self determination and fear for your own future are part of the burden package but these things are temporary . when the elder dies you WILL face the present and rebuild yourself with confidence and ease -- it just looks impossible from your current vantage point ..
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The absolute unreasonable behaviour and stubborness of my mother i know its the dementia but its getting harder and harder. She is ALWAYS right wont listen to reason or just cant reason? Everyday is an argument over something and its draining me she dosnt understand money? she dosnt understand the mess she leaves? the clutter? how much i actually do? thinks i do nothing? buys me things then flings it in my face when it suits her?
I'll stop now as id be here all night long and yes it is an isolating job i cant talk to mum anymore as its another argument...."what did you say?" dont shout at me and the CLASSIC wait until youre my age and see how you are???????????? mum i wont live to be your age if i continue this job for much longer!

Ha! bet youre sorry you asked now?
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Sib who is the primary on DPOA but lives out of town and does not understand that my days off work for me and hubby when I am running all over the place to take care of our mother. Sis won't give up her weekends to come down here...a 40-45 minute drive.
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Lack of appreciation. I'm sure it is different for many different people.
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There are so many "hard things" about caregiving - it's hard to settle on just one.

-Isolation and loss of relationships
-Dealing with the childish behavior of an aging parent who is regressing due to early-stage dementia
-The lack of hygiene - again due to dementia
-The lack of help from others in the family, and their sometimes condescending attitude (as in, "Oh, you're so wonderful, I really give you a pat on the back for what you're doing for Mom and I'll pray for you..." instead of helping)
-The loss of "self" - I no longer have a life of my own, a home of my own etc - all that I own beyond the basic necessities is in a storage unit, and I gave up my home to move in with mom.
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The hardest thing is going into a *new job* [caregiving] with zero training and no experience. If I went to be hired by an Agency, I would be quickly turned down.
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I think the hardest thing for me as my Mother and Daddy aged was to become more like their parent than their child. Role-reversal is no easy thing and ideally it can be a gradual process and accomplished with love and respect. In the beginning, I found myself taking control over some of their normal functions, such as writing checks for them, when they could still do it for themselves. So I had to "back off," yet stay alert to that time--and it did come--when I had to manage their finances. I think it's important to give the elderly as much independence as is possible, as long as possible.
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The isolation.
Secondly, dealing with the fallout from well-meaning people who call and dump their problems on my elderly mother as their way of "having interesting conversation". (Fallout: OBSESSIVE worry, gossiping to others about the problems told to her, acting hopeless, nightmares, sleepless nights, increased pain, headaches, confusion...yeah, Real Fallout!).
Lastly, accepting you do not have all the answers.
Ok..one more: being totally overwhelmed, exhausted & frustrated, with all of your respite time used up ...so, no where to run!
Yep, other than that...and no pay....combat or otherwise,
Piece of cake!
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Becoming the main caregiver with no real authority (POA) over him. Therefore oldest sis and him do whatever they want. Yet, when the doctor, EMS ask who's in charge, they both point to me. I equate this also to mean: if something goes wrong, I would be held responsible since I should know better.
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Mine is the constant mental battle to not take things personal...... when I am tired.... there is no way I would let any one on the planet talk to me the way Cujo (my nickname for her) does....... for me this is my biggest stressor... goes against human nature to not respond and have a good old fashioned temper tantrum of my own sometimes...
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