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I want someone to bring me a drink of water and pillow behind my back too!!! So sore. I just worked a nonstop 9 hours at my vacation. Aka part time job. Just noticed a rabbit pellet of poo on bathroom floor. *sighs* I don't want to clean now. I'll do it in the morning.
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Reply to TiredReader
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The one thing about caregiving that bothers me the most is that my mother is perfectly "FINE" with me doing all that I have ever done and still do. It is expected. She is "mostly" appreciative, having been a very gracious person her whole life. But yet there's this subtle assumption that I will continue. And, worse yet, my siblings are the same. It's like they have scratched it off their "to-do list". Now I just learned that my sister who had at LEAST been picking up a needed item from time to time ...and taking Mom every 6 weeks for lunch & hair salon...is moving halfway across the country. By her choice. Mom has always looked to me (the eldest daughter) and always will. And since I heard this from way back as far as I can remember, I find that even *I* expect it ...and feel disappointed in myself if I don't give 110%!! Isn't that weird? I lay in bed at night unable to sleep, worrying enough.have done...or am doing enough. Mom is now in AL but yet there's no rest...no peace. Some of my family have made it clear that they think I "took the easy way out" by placing mom in the home. But they don't know what all I am dealing with in my personal life.
I guess what it boils down to is I get most bothered by the fact that you are never really *done* with this job until ...well I don't know...after the funeral??? Sad. I am just constantly sad. I do not find joy anymore. With anything or anybody...not even my grandchildren can cheer me up anymore. If they're coming to my house, I sigh and try to summon up some energy deep down. Did *my* mother EVER DO THAT?? No, she enjoyed her grandchildren at her house while *I* worked to make it happen for her!!!.... And now... I feel guilty for thinking that way.

There's no relief from this, no way out - easy OR hard.
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Reply to cr0105
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cr0105 - I totally relate and understand. It's like you've been slotted into a role as your mother's support system and everyone (including your mother) can now just go on in their lives confident that whatever help your mother happens to need, for however long she needs it, will not be coming from you. Problem solved!

Caregiving no longer is something you DO (and therefore could stop doing) but something you ARE. You ARE the caregiver. Everyone's lives are organized around your adherence to that role. Your sister can move away but you can not. Other people can blame you for failing to keep Mom and home, but of course they don't share in the blame because they are not the Caregiver. You and only you are. And how could you possible think of upsetting the status quo, when it's working so well for everyone else?

It's exhausting and depressing, knowing that whatever care your mother needs for however long she needs it is going to fall on you. I know - I've spent several years trying to get myself out of that same situation, with mixed success. You did the right thing to move your mother into assisted living, to take some of the burden off yourself. But there's still a lot that needs to be done.

I know my mother fully expects me to remain in place as her main support system for as long as she lives (however long that may be) and expects me to pick up the slack if her needs increase or if other sources of help dry up. She needs that assurance in her own mind, but from my perspective, it makes me feel trapped. I sympathize with others who feel that way too. And all I can say to you is "You're not alone. In fact you're in very good company."
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Reply to CarlaCB
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Ahhh so many things that bothered me then. Mom's been gone a year now and I have to say it's easy to reflect from here than it was back then. I used to have a journal that was FILLED with complaints and observations. I've destroyed it. It was just a way to vent. Overall, the hardest thing about it I'd say was the complete lack of independence for me. I was tied to her life. I lost me. Because of that I resented her even though I loved my mom. I had very little family help. Finding time and ways to nurture the self was key. Rest assured, when they are gone, you will address all the feelings you had and wish you had done things maybe a little differently. I "send" my mother all my love, tell her I did the best I could, and ask forgiveness for the mistakes I made.
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Reply to daughter52
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For me it was the constant judging without offering any help. I work full time and have a small child and took care of my dad one weekend a month. His Lutheran pastor criticized me for not being there more - it was so much for my stepmom, yet dad would have a hissy when stepmom brought in caregivers four hours a week for A WHOLE $2 PER HOUR!!! (county subsidized the rest) so she could buy groceries and run errands (note - my stepmom NEVER demanded anything from me). My dads relatives and friends that criticized me during their visits to dad that I didn't move back to my home town to care for him (uproot two adults working full time and a child from school just to wait on my demanding dad - NO!). My inlaws criticizing me for not doing more for him so he didn't have to go to the nursing home when he fell and broke his pelvis. AND for not giving up my whole three weeks of vacation time so I could do all the stuff they didn't want to do anymore and refused to pay someone to do. Airline tickets for three cost over $2000 to fly to where they are, yet they won't pay the neighbor's teenage son $20 once a week to mow the lawn. Everyone always criticizing us for not doing more - yet they never offered to do one little thing. Finally, I would just agree when someone accused me of being selfish - "Yep, I am, though it is so unselfish of you to care and by the way - what is it you are volunteering to do? Clean the pee off the floor?" and watch them backpedal....
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Reply to Kimber166
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I am new to this website, and just reading through all of the posts on this question is probably the best thing so far to assure me that I am not alone in this caregiving situation that I find myself in. In fact, right now I think I'm actually in a better situation than some of you are. My 87-year-old mother lives with me and has mild dementia at this point. Due to a mild stroke some years back, along with the dementia, her short-term memory is pretty much non-existent. Like so many of you, I get frustrated having to do and remember everything myself (mom doesn't remember what needs doing nor does she have the strength anymore to do much), not having a life of my own, not having siblings to help (I'm an only child), and having to constantly repeat things over and over to Mom. But, unlike many of you, my mother is very meek and mild and doesn't get mad about anything. She is the first one to tell me to go out for dinner with friends, or spend an evening with my needlework group, or go to a movie with my best friend. But then I feel guilty because I'm the only loved one she has left, and she depends on me, and she likes to talk to me when I get home from work each day. I feel guilty leaving her alone any extra time since I'm gone all day as it is. I guess "feeling guilty" and selfishness on my part are what bother me the most about my caregiving situation right now. I just have to keep telling myself that when she's gone, I'll be glad that I had this time with her, even though it's hard sometimes. Then I'll be able to have my life back.

I know many of you are struggling hard in your situations. It's nice to have a place to share and know that we all understand. Many hugs to you all. Caregivers are angels ... even at those times when you don't think you are.
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Reply to dgillygal
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What I would hate would be the loss of freedom, the constant repeats of statements and questions, and the total confusion - they would kill me. I may love the ill person but my personality could not handle this. Bless those caretakers who can do this work - but not everyone is capable of being good at the same thing. Some of us are teachers, others engineers, still others singers - and the list goes on.
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Reply to Riley2166
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Don't feel guilty I've thought much worse and I'm treated the same way only it's all about her dogs. God I hate them dogs lol Ive never hated an innocent animal before and I used to have cows tht have about kicked my a** before
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Reply to INEEDALIFE80
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Wow-- I relate to these posts. The hardest is that you do not matter and who care for is all that matters. Feeling unappreciated and insignificant is a top difficulty.
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Reply to alittlewornout
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ME too!
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Reply to alittlewornout
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Being taken for granted. It's assumed that I'll do whatever is needed, whenever it is needed, regardless of what is said about me behind my back. And the sad reality of it is, without me (and my mother) the person we are acting as caregivers for would have absolutely no-one.
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Reply to LostInTheWoods
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Lake of understanding from the family, I am grand daughter in law and take care of her FULL TIME am raising an 11&5 yr old also no family helps most dependable kid of hers "needs a life too" when I ask once a month for a break(not overnight either) I am 36 no life anymore and these selfish spawn of hers go about life blissfully unaware of the sh*t I deal with on a daily basis. The ups and downs of dementia can be brutal and it takes its toll they say could live another 10yrs so when do I get to raise my girls? How can we go camping fishing or kayaking with a frail old woman that u can't leave alone anymore???? You can't!!!!!! When do my girls get to have a life with mom and dad???? People suck truly
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Reply to INEEDALIFE80
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Ditto, and AMEN to EVERYTHING above, but one thing was missing. OUR Government is NOT helping, taking care of our elderly to get the medical assistance they need, or us caregivers - at home or helping to pay for a facility in most cases because they worked hard most of their lives and make $1 too much SS to get Medicaid help. This generation is the ones that built this country, supported it with their taxes, and rarely, if any, caused trouble with the laws. There are estimated over $150 million people, mostly 60+ yrs. old in the U.S., caregiving at home, giving up their own income and future retirement benefits. It saves our gov't. tons $ while making us poorer. the millions caregivers reported may have been just AlZ and other Dementias. It was on an Alzheimers report on tv by doctors research recently. It may have been just for ALZ. It is an epidemic disease. They also said this disease and other dementias was going to take this country DOWN financially unless they put $ into medical research and find out - what's causing it.
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Reply to lovinmommie
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My Mom is a sweet and easy going person. I am so lucky in that regard.

But..I sure miss having someone to talk to!

MOm has profound aphasia. Very little of what is said around her or to her actually gets through to her. None of what comes out of her mouth is recognizable words. The effort to sort out even one sentence can take an hour or more....and more often that not it is just complete nonsense. I find I cannot focus my attention that completely on her....especially knowing the result is not going to be any information that is worth the effort to figure out.

I really miss conversation. Just someone to talk to...about anything.
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Reply to Katiekate
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Of course, the worst thing literally is watching my 97 year old Mom struggle, both physically and now mentally... We've been more than just Mom and Daughter for the last 20+ years - best friends, partners, roommates... She's in a nursing home now because of a lot of things that happened to her after a fall where she broke her hip and wrist... I've finally badgered insurances into paying for outside therapy (there really isn't any "inside"), and she's stronger - she can get up out of the wheelchair and use a walker! Except - now she's getting more and more confused, her short-term memory is more frequently no memory at all... I have to see her almost every day or she becomes frightened (there is no one else but me for her) - so her life is now mine. BUT? You know what's the worst for me? (please don't think too harshly of me?!) People POOP! I never had kids - never changed diapers, etc. - but I can't imagine that is as bad as trying to help Mom in the bathroom! I could never be a CNA... When I take her somewhere and she says "I've got to go - now!" I just steel myself. It literally makes me sick... I've shown dogs, occasionally bred, and I can do anything with dogs or puppies - clean anything up - and it's not pleasant, but doesn't bother me the way people poop does! OK, that's my confession...
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Reply to ImageIMP
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ImageIMP, that's kind of funny because I've always balked at cleaning up after dogs, yet here I am cleaning up after a person. And dogs don't need their bum wiped, and they don't (usually) get it smeared all over the place!

I'm struggling with this with my mom right now, I can handle transfers from bed to wheelchair OK, I've even gotten used to getting her washed after an accident, but when she can no longer help even a little bit even a small BM in her pull up ends up everywhere. I'm up against that invisible line I drew and I'm not ready for what comes next.
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Reply to cwillie
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The incontinence of 1 & 2 is bad, the clean up involved, the odor which seems to linger until I open windows & go crazy with cleaning. With his ALZ progressing my brother requires hands on, yet, he still wants control, so direction & guidance is a challenge. He's resistant to my assistance, I must be focused, strong, on my guard. "Get help," I hear, but some don't get the struggle involved with that. Most will shy away from "messy duties," even with offers of decent $, or may not want to address behavior concerns. I get it. 6 years ago I was clueless I guess about this d--- disease. I see his old tough self & hear strong vocabulary from his well days. I so wanted to bond as siblings, thinking & hoping for a chance, not to be. As a country we need to address ALZ more diligently. Educate and compensate people appropriately who take on a caregiving role, they deserve it. Nice facilities when a caregiver's when time creeps up and not so far out of reach for most everyone $ wise. I don't wish any disease or illness on anyone, this ALZ is not nice! God Bless Caregivers
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Reply to Blessings4Ever
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It is difficult to care for an adult dealing with incontinence issues. I know a lot of family members are not prepared for this phase of life. My father was doing well at the beginning and then towards the end it was a struggle because he was becoming weaker and weaker from heart failure and probably vascular dementia. I know I was getting burned out. It takes a village to raise a child, but it also takes a village to care for our elders. Sometimes our compassion and understanding are tested over and over every day. We must all find the strength to carry on the best we can.
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Reply to cdnreader
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My Mother thought pooping was"nasty" and not lady like so after she broke her neck,I had to help her train her body to go more normally and I took her to the john every morning whether she needed to go or not and covered her with her blanket,got her oxygen on her,got her a water or gingerale, and put her fan on her,then ran outside and got the newspaper for her and I tried to make her as comfortable as possible.Then I let her alone and checked on her from time to time.It took awhile but she finally became "Potty Trained".
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Reply to luckylu
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The hardest thing is being here, being the caregiver.
The only thing that works lately is denial.
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Reply to Sendhelp
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The hardest thing for me is missing the relationship I use to have with my mom. I sometimes wonder if that relationship was fake and this is real. Mom and I do not speak much. I feel that she resents that I am her caregiver. Her happiest time of day is when my brother calls and asks for money. I hear her talking with my husband and she is so chipper. I come downstairs and ... nothing. I've been a good a faithful daughter. I thought it would be a special time for us. Now I dread it and feel guilty. Mom is easy to care for. Please, know my mom is a wonderful, sweet woman. She is loved by everyone that knows her. It is the dementia I am seeing and it is sad. I blame myself that I am not doing a better job. When mom passes away I'd like to feel there was nothing I could have done better. I do not think that will be the case. I'm not sure who I am speaking to just needed to speak.
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Reply to Patticake2
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I cry a lot!!!!Married for 47 years.I am the 24/7 caregiver for my husband.Started in 2009 .He was on vent in hospital for 7 days. When we brought him home Dementia started.This last year I cannot leave him alone. He is in diapers .He has sundowners.He has bouts of anger and meanness.I have a friend who sits with him sometimes once a week.I pay her .I have chi!dren who sit with him so I can go out to dinner with friends.It is a very frustrating life.I had to retire.I am 67 and wish I could really enjoy my retirement.
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Reply to darby57
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Patticake - I want you to know that we all are listening here. It is very sad that you want so much to be a good daughter and that you still feel so unappreciated. I can relate in a way, because I tried to take care of my sister I the months before she died but she really didn't want me around. I wanted to have a special experience of closeness and connection with her but it just didn't happen, and I was powerless to make it happen. It is very sad. Illness does not bring out the best in most people, even if it's not dementia. Sometimes people becomes so focused on their own struggles that they don't consider the effect they are having on those closest to them, or what they are going to leave behind when they die. I know that was the case with my sister, and maybe it is with your mother as well. But I know how sad you must feel not only now but in anticipation of how you'll feel when she is gone. Many of us hope for something from the experience of caregiving, if only the sense of connection with the loved one, and the satisfaction of having made a difference for them, and sometimes even that is denied. I don't blame you for feeling sad.
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Reply to CarlaCB
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Patticake said:

".... Mom and I do not speak much. I feel that she resents that I am her caregiver. Her happiest time of day is when my brother calls and asks for money. I hear her talking with my husband and she is so chipper. I come downstairs and ... nothing. I've been a good a faithful daughter. I thought it would be a special time for us. Now I dread it and feel guilty. Mom is easy to care for. "

This, so much, this. My mother spends most of her time giving my angry stares and refusing to speak to me. But when the dog walks into the room she cheerfully converses with him. "Oh, Riley, there you are. How was your day? etc" Her caregivers and everyone she meets tell me what a sweet lady my mother is. But she is never that person for me. And, yes, I also have a brother who only calls when he needs money and boy does she light up when he calls.

I do believe that she resents me for taking care of her. Ironic, isn't it?
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Reply to mom2mom
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(((((hugs)))))) to the underappreciated. I know what it feels like and it is ironic.
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Reply to golden23
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The extreme self centeredness and often times greedy behavior
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Reply to QueenB75
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Today I figured out the thing that bothers me the most. It is living someone else's life. I understand how people get lost in caregiving. You live someone else's life for a few years and lose track of your own. It's like going down a long dead-end street and then having to figure out how to get back to your own life. That life is probably gone, so you have to reinvent. I envy the people who have family that help them stay oriented in their own lives.
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Reply to JessieBelle
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Yeah, people with family and and people who work outside the home too. In one way it adds to the stress because you have to juggle your job and your caregiving responsibilities, but it also keeps one foot in the outside world so your life isn't totally consumed.
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Reply to cwillie
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No time for myself!!!!!!!!!!!!
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Reply to AnnabelleB
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I can identify so well with the comments by Queenb75 & Jessiebelle. Even with the progression of this d--- disease my brother's old self is so "still there" especially with me, he displays an "it's all about me" attitude. I get this, he's bitter, forever angry about everything, but his "old self" makes the caregiving so much more challenging & depleting. I know someone who is watching his mom "slip away" from an illness, no memories impairments at all, 85, she has a kind & sweet, sad way now. Mind you, when well, she was the opposite, tough to break thru to. I always hoped & wanted a normal relationship with my brother. I find myself thinking of the past more these days, how I always had to give & bend more, now I remind myself to forget & forgive more. The day of his ALZ diagnosis we shared a "real hug & tears." I remember our family counselor, who had a "right on" way about her, saying to me, "Cherish that, it may be the last." Initially I was perplexed by her comment, but out of respect said nothing, I get it now. Even at this "later stage" I hear, "Get out my way," "Give me that," or "You're not helping." I know my when will come & I wonder what I will do & how I will cope with the loss of him, being in his corner. Some say to me, "He's gone now." I don't see that yet, it saddens me. Caregivers sometimes say, "What the h--- happened?" Humor plus a respite please! Hang in caregivers, a job well done!💐
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Reply to Blessings4Ever
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