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For me, it is hard to deal with the anger directed at family by the person being cared for. We all try to let it roll off our backs, but it is hard some days when nothing we do is right or good enough.
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Reply to HannahLeigh
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The lack of respect caregivers get from society, including family and friends, because they think caregiving is not a "real job"
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Reply to careisgiving
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My husband"s needs increase every day and his ability to be a part of anything decreases. Our life has narrowed to me doing everything and having almost no contact with friends & family. I try yo remember that if he were any where else, he would still fill my heart & mind. And I so appreciate all the caregivers comments. Thank you all.
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Reply to Sunflower17
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No sleep
Driving 50 miles round trip every day
No days off
Not knowing what to say when told "maybe your brother can stop by more often"

I am thankful that my dad is still in relatively good health though, and I really shouldn't be complaining.
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Reply to Syracuse915
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'What have we got on today?' 'What's next?' 'Are we expecting anyone today?' x 100. Every day.
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Reply to sherunner
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Isolation from friends and church. Have to hire a sitter before I can leave the house ($18 an hour), and have to plan ahead for that. Make plans and then the caregiver doesn't show up. With sitters who are friends, something comes up and they have to cancel. (At least they let me know!) With paid caregivers, they just don't show. No call. No explanation. Makes it difficult to stay in touch with friends when we have to keep cancelling plans. My husband and I very seldom get to go anywhere together because we tag team staying at home with Mom. Very isolating.

Or Mom is sick and I can't leave her.
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Reply to RosemarySpied
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"Freedom's just another word for nothing left to lose" is from Janis Joplin's "Me and Bobby McG."
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Reply to RosemarySpied
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Lack of freedom, social isolation, finding out how little siblings and other relatives care, no empathy, no appreciation for such a huge sacrifice caregiving is...
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Reply to katiekay
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just read sherunner's comment. What helps us is my making a note with day, month, date & year at the top (large print) list of day's activities & time, if any. My husband keeps the paper in his shirt pocket and looks at it often. I hope this is useful. hugs & prayers
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Reply to Sunflower17
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RosemarySpied can't agree more with you regarding agency people, the worse when it comes to dependability. When and if they were able to find me someone, another beef, all would seem fine, then poof, just gone, "missing in action" the agency would say. With no notice not ever able to send a back up person. One agency person I had was good, but started to take advantage, would oversleep or come late, rushing my brother. I know their pay is lousy, so I tip. My brother is easy, more compliant with care these days, ambulatory, just assistance with a shower and dressing, then off to his day program, which he loves. Yet no agency can find help for him, so I'm it, his sister. Just sad and wrong! It's almost like "they" are forcing me into placing him, they have said it, "Think about placing." I'm sorry I've asked for help, they stress me, pee me off! They make promises, charge money, have rules, can't or don't deliver! I need to let the idea of "help" go.
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Reply to Blessings4Ever
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Freedom is a big one, but most of all I just miss my husband. We've been married for twelve years and several years ago, he was diagnosed with fronto-temporal dementia. Our whole marriage, I'd looked forward to our "honeymoon period," after his daughter had grown up and we could could finally stop dealing with her very nasty mother. Instead, despite his superb health, physical fitness and intelligence, this horrible disease has taken over the rest of our lives together. He laughs at the tv constantly, even during shows about the Holocaust. He can't communicate at all, and 99% of the time does not understand what I say to him. Now we are like mother and child. My only hope now is to be able to keep him at home until the end. The progression of this disease is impossible to predict, so I'm starting to feel like I'm living my life in limbo. I'll be 50 in a month, and he just turned 67.
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Reply to Rafaela
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My heart goes out to you, Rafaela. We never know what life will bring, but we never expect anything like this.
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Reply to JessieBelle
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Rafaela, just so Sad! Like Jesse said, we just never know what tomorrow brings! Hopefully his daughter helps out now and then, so you can get a break now and then! My heart goes out to you! Take care!
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Reply to staceyb
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So sorry for you, Rafaela & your husband. Both of you are young & you are to be commended for going on this journey with him. Educate yourself on his diagnosis, that will help you understand his behavior. You will see many sad changes with frontal temporal. Look into day programs for him, some offer activities & trips that you can be a part of if you want This will be a new normal for you, so, take care of you as well to be a better caregiver to him. Don't shy away from support & "good" help if & when needed. It will be a roller coaster ride but your care & love will prevail. Stay strong & focused for you both. God Bless
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Reply to Blessings4Ever
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Having the joy sucked out of my life
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Reply to jellybean18095
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I honestly cannot think of just "one'" thing & I don't want to go on & on. I'm guilty as charged with my "long" stories, sorry, but this forum has helped me, thank you all! If I knew then what I know now I might have made different choices, just saying! God Bless
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Reply to Blessings4Ever
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Dealing with family members is more work, a pain, and hurtful than taking care of mom. No free time to be with my family and do the things I NEED and want to do.
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Reply to lovinmommie
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This is the first time I have posted and I'm so pleased I have found this forum and I'm not alone.
My Mum is 92 and lives 10 minutes drive from me.
She has done really well so far, but is now having auditory hallucinations (no UTI). She phones and asks me to listen, I can hear nothing but she gets angry with me when I say I can't hear anything. She blames her neighbour and says she will go next door to complain. Nothing her geriatric doctor, nurse or I say, can convince her the noises are her ears playing tricks.

I take her shopping twice a week and each time I ask if she wants to come along, she says, 'I was afraid to ask'.

She has started to forget a lot and shows me old family photos, saying she doesn't know the people in them and they must have been left by the people who lived in her house before her - 40 years ago! She also mistakes my daughter for my cousin, who is 35 years older. My daughter is expecting in June and I really want Mum to understand this is her first great grandson and not a new cousin of mine.

Finally, for now, the stories that she repeats over and over, as if I haven't heard them before. How do I continue to appear interested when I can repeat them word for word?

Oh, ok, one more thing, I am really dreading the time when she needs personal care as I really feel I won't be able to cope with that. As it is, I struggle to clean her toilet as she has accidents and doesn't seem to notice the mess she leaves behind.

I feel bad criticising her but I am starting to feel emotionally drained. I'm an only child so no siblings to help out.
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Reply to AngelaBr
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Welcome Angela. I'm no expert, but It sounds like your Mom has dementia. If that's the case, it will not be safe for her to live alone for much longer, if it's even safe now. You don't say if she's in memory care or living independently. (Since you're cleaning her toilet, I assume she lives at home still.) If she's in a nursing home, they will take care of the personal cleaning routine and you won't have to. If she's still at home, it's time to start looking for a facility for her because she's really not safe on her own with the delusions and hallucinations. One of those voices could tell her to burn the house down or shoot the neighbor's dog - you just don't know!
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Reply to CarlaCB
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My mother is 90 and a half, and lives 7 - 10 minutes from me, too.

I will not do personal care for my mother. She doesn't need it yet. I will also not do any housecleaning for her. She has money and has to decide when she's ready to hire a housecleaner. I will not become her personal slave.

Does your mother have money to hire help?
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Reply to CTTN55
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Thanks for the reply CarlaCB, I spoke to the occupational health nurse today and she is coming round to do another assessment which will be followed up with an appointment with the geriatric consultant, so hopefully they can assess any deterioration since her last appointment six months ago.
She is living independently. At the moment the auditory problems are mainly repetitive music but also some words and phrases being repeated, like her house number - thankfully nothing sinister.

CTTN55 - she can afford to pay for help if she needs it and that's something I'll need to look into. Her bathroom is right next to the front door so I admit I clean because I'm embarrassed if anyone comes to the door and also I need to clean it if I have to use it - although I avoid that as much as possible.
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Reply to AngelaBr
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This question (and the responses) is making my head explode.
Thinking on it makes my heart hurt as well.
I will have to return later.
But I thank you for asking it.
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Reply to Mojorox
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What bothers me mabe not THE worst but it's up there is tht my mil thinks I'm going to take care of her when she's old(I take care of HER mother and she doesn't help AT ALL!!! her poor mom isn't even allowed to take her beloved doggies to her house so she won't go) I am starting to think I have a stamp on my forhead that says dummy tht only selfish a**holes can see. Smh
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Reply to INEEDALIFE80
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I have been taking care of my husband for 10 years. He have 4 grown children from a previous marriage, we have 1. They have never bothered to take him for, not even a few hours at a time to give me a break. If they wanted to help they should not have to be asked. I have not had a break since I stopped working 2 years ago. He also have siblings, they don't help either. But always want us to come to their house for different functions. The two daughters were trying to tell me what to do. After they realized they could not dictate to me they no longer call or even come by any more, Glad about that.
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Reply to drspock74
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Vwagain, my situation is so similar except I moved home 7 months ago to help my dad. My mom has frontal lobe dementia. He jumps and is at her beck and call. He has created a monster. She has no rules or boundaries and because she knows my dad would never tell her no she is completely out of control. So, I had to become the bad guy, took the car away, made the home dementia proof and made her to go to the doctor and after many lost battles finally get her to shower. Our relationship was always stressed but even more so now. My dad still worships the ground she walks on as he is killing himself to care for her.  It breaks my heart everyday and there is nothing I can do to fix it.
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Reply to Elizabeth48
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I have a long list, but I think what bothers me the most is that my life has been hijacked. I have kids at home, the youngest is two. Because my mother can't be left alone we either do nothing as a family, have to scramble to find respite care (when we can afford it), or take her with us. When we take her she makes herself and us miserable. For example, we took her to an Easter egg hunt, our son's first. She fretted about all the children getting too cold, getting sick from being outside and "underdressed" (EVERYBODY'S kids...ALL the kids), choking, and falling in holes. When we were all talking and laughing, she jumped off and took off. That put an end to the "togetherness" as one adult was wrangling her, and one was wrangling kids. This was after I had been assured that one sibling could watch her at our house, then couldn't, and another sibling said he had a cold and couldn't help. My mother VERY often thinks my son is hers. She thinks he is my brother, who was sickly as a child, so when we bathe him she's rattling the door handle and yelling or even hitting it with her shoulder. When we take him outside, she becomes agitated and angry. When we tell him "no" and he cries she starts yelling, trying to take him away from us, accusing us of beating him. We are behind in taking his pacifier away and moving him to his own bedroom because she becomes so agitated at his smallest peep-even if he's "having too much fun," as well as because I'd be worried to death wondering what she might do at night with him in his own room. These are normal child-rearing activities that we are having a hard time doing. I know she can't help it, but it is difficult to deal with.

I am the youngest of five siblings. The sibling closest to me in age is 17 years older...they've all raised their children, and my kids' childhoods have been taken over by their ill grandmother.
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Reply to Joy135
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It's difficult for me that I am one of six kids yet I am the only one caring for my mom and making sure that she has care each and every day and night. I am the only girl but I have five brothers one who is deceased yet the other four do nothing to assist. They would rather see my mother in a nursing home or Assisted Living then at her own home or she prefers to be. I have helped financially physically and mentally for almost 6 years now since her stroke. It's been at the cost of my own marriage comma although my husband agreed to assist my mother until she passed and she's been a widow for over 30 years yet decided that he didn't want to do it after all. So here I am helping a sibling who is mentally disabled my mother who is 83 and a half and requires 24 hour care with twin 10 year old girls. I love my mother deeply she has always been my best friend and I would never leave this job to anyone else but myself because I care about her more than anyone could ever but once in awhile I feel like I deserve a break or at least a some recognition for the sacrifices I make every day for everyone else. I have never been a selfish person but now that I am older and see how selfish my brother it's really are that really does hurt it's painful. Anyone else in the same situation?
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Reply to ccsupermom
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my mom has dementia!!!!1 seems like there really is no help for me but her psychiatrist kinda sometime i wish i could put her in a prison cell when i tell her to stop drinking Dr.pepper she will drink it all day if she does she goes crazy .so today i bring a 1/2 cup of water & tell her to drink it she does she tells me i want to go home & she sometimes tell me i want to go get out .so just this week she did so i took a long walk ,then she cooled down & went to bed before i came home i stayed out in the car for a hour .if i got paid everytime she wants to throw me out id be pretty rich .
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Reply to meridianav
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For me, im sick of people who compare their problems as being worse, compared to being a caregiver. I'm not trying to undermine their problems but in my opinion, there is now way of anyone understanding what it's like to be a caregiver unless you are one and for someone to ignore the stress a caregiver is under while trying to say there stress is worse really gets me.

I figure everybody has problems but nobody's problem is less important and I'm really getting sick and tired if people who think otherwise. I don't understand why people have practically have to have a debate on why their stress or problems are more important than someone else's.

In my opinion, it's a lack of empathy for each other.
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Reply to SingleOkie
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Roger, you are exactly right. Which is why this forum can help as a kind of support system. In NYC there is something called CaringKind to help people with dementia and their caregivers. I found great empathy there while caring for my sister, even though everyone around me thought I was exaggerating the situation.
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Reply to Peace516
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