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Everything. Everything bothers me about caregiving. I am SO not cut out for this.
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bundleofjoy Apr 2021
hugs!!!

it’s really too bad, so many of us are in difficult situations.
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The hardest thing about dementia is slowly losing someone before you actually lose them. The person you love just isn't there any more. You lose a little bit more of them every day.

I know there was a book about breast cancer called "The Long Goodbye", and I'm sure it's a horrible disease, I don't want to take anything away from anyone who has had it or lost someone to it, but I think dementia is truly the long goodbye.
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bundleofjoy Apr 2021
hugs!! hearing loss can accelerate dementia. hearing aids can help.

hearing loss and cognitive decline/dementia often go together.
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strangely, one thing that bothers me, are the caregivers (private help we hired). i help. we also have private help.

they know they have quite a lot of “power”.

sometimes they’re unfriendly. but they know we can’t replace them easily.

it takes time to train new people. very hard to find honest, hired caregivers who don’t steal in your home. we don’t have cameras at home, but we know stealing happened. the current caregivers do the job well, but they’re quite unfriendly sometimes.

i would fire them. but...

we need private caregivers. they know that.

i hope i find some good alternatives at some point.

it would be best of course:
a friendly, competent caregiver. i need to find better caregivers!!

it’s unfortunate to be dependent on these people.

hugs to everyone!
i hope your saturday is good!!
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LoveScrabble Jun 2021
I used to have caregivers in my home to care for my mother while I was away at work. Anything of value was placed in my locked bedroom. Not an ideal way to live, but if they thought it was ok to take expensive shampoo, I'd hate to think what would have happened to money and jewelry.
Best wishes to you !
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Been a caretaker for 10 yrs now. I saw and cared for my sister, dad, other sister through terminal illnesses until they passed. Then my mother needed help along the journey. She is nearing the end of her journey now. Few more months maybe. I don’t know what my life will be without caretaking. I have glimpses of better days to come. I spent all my 60’s in caretaker mode and I just don’t know how to be any other way at this point. I am hoping for freedom and doing what I want to do now. It’s almost within reach.....
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OldArkie Jun 2021
sounds like my plans for retirement and fun and travel! My wife's fall and resulting crushed vertabra ended that notion 2 years after retirement. She has deteriorated ever since, and now Alz, has reared it's ugly head along with her other infirmaties!
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The main thing that bothers me is my mom can't walk very well and she sometimes get up and ttys to walk and she falls and I can't left her so she has to stay on the floor until I can get someone to come over and help me get her up off of the floor
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hallah Jun 2021
Check with your local fire department/rescue squad to see if they provide non-emergency lifts. This is a free service where I live but may not be other places. Some towns or cities offer a non-emergency lift service for a fee per year. My m-I-l had it. I believe it was a nominal fee; much better than the $250 charge it would have cost her each time her husband fell.
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You are doing what no one else wants to do, for free, not building a retirement for yourself, and basically putting your whole life on hold, no sleep, while your own health goes down the toilet, did I say no sleep? I'm sorry for the bluntness.
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Beeshepard Jun 2021
No apologies necessary telling the honest truth about how the majority of us all feel especially me! Working in an office is so much easier then being a caregiver. This caregiver business is endless and exhausting
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That the only thing I look forward to is when my mother finally goes to bed at night. .... Even though I have tons to do before I can sit down myself. And even then it's hard to relax because I expect to be jolted by a motion alarm.

And that my brother is just living his life with not a care in the world for what is going on.
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Beeshepard Jun 2021
This is exactly how my brother conducts himself too. You're not alone!
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Well now that the ALF that my parents live in has opened to visitors, I find that am overwhelmed by the task that lies before me. Endless appointments to all the stuff that was canceled due to Covid, my mom canceling these appointments, my dad and his constant need for attention and entertainment. Very depressed right now.
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It drives me nuts when people read an article on the internet and now they know more than the doctors, nurses, caregivers, CNAs, you get the idea.
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NeedHelpWithMom Jun 2021
So true, many things on the internet are not accurate. Yet, some people believe everything that they read.
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"Mother thought you might want to...."

Oh, did she? I don't.
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That no matter what I do, my mom's son remains the star of her show (he's done absolutely nothing but send cards on holidays over the past four years). And I hate myself for subconsciously harboring the hope that I'd get to be the favorite in the end, LOL. I did what my conscience told me was the right thing, I'd do it all again, but it still stings!
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Valeriegestone Jun 2021
Send him the bills. Tell him you have something you need to do and say he sould come and take care of her for a week.
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That my mother in AL has only one subject with me...TAKE. ME. HOME. She can talk to others nicely about other things...but I get all the vitriol. "How was your day, daughter", said my mother....never. ((sigh))
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Right now what bothers me the most is that I can’t take my wife’s dementia from her. I can’t heal her. I can’t!! It tears me apart at times. But I would not want our roles reversed as I wouldn’t want her to have to take care of me.
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OldArkie Jun 2021
My problem is similar...my wife is somewhat introverted and she wants a conversation companion constantly, even though she can't remember who, what, or when, even if we just spoke of it! Sometimes, she seems to understand and shortly thereafter, she can't recall we even spoke! She has a couple of friends that call her and visit and she offers them advise on things, even though she will forget they called shortly. One has to remind himself, often, that she doesn't know what she is saying and I can never take offense at what she says!
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The millions of details it takes to manage someone else's life and the amount of mental energy and space in my brain that takes up that isn't mine anymore. Nobody seems to get this. Family doesn't seem to understand that while they're off swimming or shopping or doing whatever they're doing, I'm here making meals, paying bills, making and going to Dr. appts, making sure medication is taken, food is eaten, house is in some order, etc., provide companionship, run errands, etc.

None of these things are things I'm doing for MY life. In fact, it's an accepted family fact that this IS my life. I'm made to feel selfish if I even suggest I get a day to myself without having to think about all of this stuff. One day to fill my head with whatever I choose, not filled with the needs of someone else. This is a Herculean request. Often met with exasperation, excuses about why they can't chip in, how hard it would be to come over and stay here for longer than an hour, etc.

It's all very complicated and I guess that's normal when you care for elderly parents. There are resentments and anger and hurt feelings and, generally, one person does get stuck with the majority of the work. I'm sure it goes back to family dynamics and childhoods, etc. but, boy, I hate to say this...I wouldn't wish it on anyone.
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Valeriegestone Jun 2021
I got a black telephone book A - Z from Staples and an A-Z folders. Wrote everything in telephone book - like hospital/doctors names and numbers, lawyer, cable, friends addresses and the list goes on. Then use the A-Z file to store papers. Helped my mind stay organized and less manic.
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Well said, exhausted one.

" the amount of mental energy and space in my brain that takes up that isn't mine anymore."

That's what got me the most. Even over two years later the estate is not quite wrapped up. More of my brain space is mine now and I look forward to the day when the tangibles I still have to do are finished.

I don't think people who haven't been there get it. I am trying to spread responsibilities among my kids so no one gets it all - even if I have to hire someone to do some of it.
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notrydoyoda Jun 2021
Good to hear from you, but sorry to hear that the estate is not settled. Neither is my former mother in law's estate. I can't even imagine the amount of mental energy and space this takes up in Debra's brain which means that part of her mind isn't her's anymore as the co-extrix on top of being a cancer survivor with complications like an incurable UTI and a no good husband who demands being looked after.

As you have often said, do something good for you today.
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1) He turns the boiling spaghetti water down, it doesn't cook.
2) Defrosting meat in cold water and a plastic bag, he turns the heat on under the pan.
3) He piles plastic tubs and boxes up, in the middle of the kitchen, and the largest goes on top. I cannot access stove.
4) I am cleaning and organizing, clear out a space, he puts stuff in the space which prevents me from organizing.

I don't know how he sneaks to do all this, when he never leaves his computer or cell phone.

Only a small example of daily struggles.
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I am concerned my remaining years will be spent tending to my mildly incompetent 83 YO wife day and night. I could expound on my resentment for several pages, but my feeling of responsibility keeps me here, and will continue to!
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Want to relax and dad asks me to do something
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We all agree dementia/ALZ is nasty. I have found one “good” thing about my wife’s dementia. She has stopped “narrating” tv shows and movies. For years, when we watched tv or went to the movies, she would talk the whole time about what was going on while the movie was playing. “Look out behind you! Someone’s sneaking up on you.” Very annoying to me and others. I could not break her of the habit.

Now she quietly sits and watches tv with me. I do not miss the narrating. I do miss the conversations we had.
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I feel like it's never ending and no one understands. My parents have been in and out of the hospital since I was in high school (I'm in my 40s now). I'm an only child with no aunts or uncles. It slowly acclimated to my mom having a stroke and passing away a year later. I'm not the main decision maker, my father is and he makes very bad decisions exposing my parents to home attendants that stole from them, a relator who undersold their house by several thousand and so much more. I don't want power of atty and I don't think my father would give it to me because he wants to be in charge. It's been a life time of watching them and now him make bad decisions. They threw money out the window like it was nothing. I have bent over backward to help them sacrificing my well being while feeling like they don't appreciate me or want me to have my own life. They have felt like terrible children since I was a teen so I have not had my own. I have repressed anger that shows itself when I'm pushed too hard. The main thing I don't like is that I don't know how to feel better. I have tried many things and types of therapy. I have ignored the pain and anger it and fooled people and myself but it still surfaces.
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Sheri6185 Aug 2021
Omg I feel the same way is you . My brother, the Golden child, and the executor, and I do all the caregiving, pay bills, all home duties and his retired butt can only help me 4 hours a month. That’s a joke and he thinks it’s fair
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Cleaning LO up after accidents from incontinence both fecal and urinary. The first time I had to do this was when LO was sleeping and had a bowel movement in her sleep. It smelled up her small house so bad we couldn't sleep. Woke her up to clean her and I almost vomited.
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earlybird Jun 2021
I use linen scented Lysol, it works wonders.
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Lold! That's my mom. I was in so much pain after my knee surgery I cried. My mom called two weeks after my surgery and said, "when you're out and about today, pick me up so diet coke. I'm all out."

But I'm careful who I express these thing to. When people say, "you should be glad you still have your mom."
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People think you have a lot of extra time on your hands. I few people have said to me "what do you do all day?" Very irritating, indeed.
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Her need to CONTROL me. She will not give an inch. Thinks she knows more than I do.
Cannot see me as a GROWN, INTELLIGENT PERSON...just her "little girl." :/
Doesn't want to accept the fact that she has a VICIOUS temper and acts like a 2 year old at times.

Wants everyone to think she's really a nice, friendly caring lady with her mind intact. (To the best of ours and doctors' knowledge, she does have her mind but she would literally kill someone if her "secret" was discovered.) Keeps her temper a secret.

Has admitted she needs help, but then when help is given, isn't always willing to cooperate.
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Sheri6185 Sep 2021
You need to get a diagnosis so she can qualify for certain things. It’s no joke . I just Don’t want you to get blindsided by all of this. Dementia is a beast of a disease
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I don’t like cleaning teeth! So I always do that first. I am very careful to put my husband and children first, I refuse to provide more help then I am capable of giving without feeling over burdened. I ignore silly, mean, comments or requests.
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Bothers me that I see my mom struggling everyday trying to be there for my dad but so frustrated, defeated stressed and tired. I help as much as I can but have to work so it's hard. The mental stress is overwhelming me so I can only imagine what my mom is feeling. I try to talk to her about respite care or maybe it is time to consider a care home but she is in denial. I'm afraid she will pass before him just from the stress she is under :(
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Sheri6185 Sep 2021
You need Respite care like yesterday !
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ahh ahaahaha that was funny!
for moi: the constant changing of their minds: I bought them new duvets,

dialogue:
yes ok I want it, (so I make the beds),
no I don't, (so I removed them),
now, can I get them back....
moi: suuurrrre, tomorrow.
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BurntCaregiver Jul 2021
shuffle,
It does more harm than good to over humor them because it complicates things unnecessarily for the person with dementia.
If you've made the bed, it stays made. It does get done again.
When it's time to get dressed (depending on how advanced the dementia is), you offer two choices. Not let them look through a whole closet. Unnecessary complications.
Repeating the same question over and over again in a loop. Don't answer every time.
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Losing the hopes and dreams you had together for the future.
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Challengingrole Aug 2021
Yes! This causes me great sadness, too. I’m so sorry and I hope good things are ahead for you despite your current circumstances.
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Losing hope for my future because of my health and not sure how much longer this is going to go on.
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SeaMar Aug 2021
I said this very thing to my hub. He goes to work every day and I get 4 hrs every week (2 hrs/2×a week). Today, he left early and is coming home late. She (his mother) walked right into our room, no knocking. If I would say anything, she wouldn't remember tomorrow so what's the use? I know she's going to be the death of me.
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Absent sibling visiting and criticizing everything I have done for the last three years.
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earlybird Aug 2021
I love it when some family members don't lift a finger to help out and then give advice. Ignore them and be careful what you tell them.
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