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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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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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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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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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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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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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ME too!
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Reply to alittlewornout
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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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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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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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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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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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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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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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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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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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I recently saw an old episode of the TV show "Mama's Family" where "Mama" was laid up from breaking her leg so in a wheelchair and temporarily living with Eunice. It made me laugh AND cry!!!! So darn accurate with Mama one second saying, "Now Eunice, you just sit and relax. I'm just fine" and the next second (right after Eunice sits down), "Although it would be nice to have a drink of water. My throat is so dry. Yep, if I could get it myself, a nice cold glass of water..." until Eunice gets up to get it. Then it repeats all over with something else. Finally Eunice gets so tired of Mama's requests she lets it be known that she is DONE!! Well then, Mama gets mad and wheels into the bedroom spouting "well I guess I just hafta do things myself if I want 'em done! My very own flesh and blood won't even take care of me!". Then they hear a thud. Eunice falls to her knees on the floor & screams for her husband to go see if Mama is still alive! Eunice sits there, rocking back and forth on the floor, wailing, "oh my Lord... I've gone and let Mama DIE!!! - with my last words to her said in anger..." Finally they come out of the bedroom and Mama says, "Eunice?? Whatever's the matter with you??" and Eunice goes running over to Mama and hugs her and is so relieved that she's alive!
Then the whole thing starts all over.. Eunice fussing over Mama 'till Mama insists she sit down!! Until Eunice sits down, then Mama says in her sweetest southern drawl, "well it sure would be nice to have a pillow behind my back" Lol. 😂
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Reply to cr0105
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Brdlvr1 - as I was reading your post i thought that sure sounds like my mom. And the part about how we wonder how much longer they'll be with us...and how we will feel guilty when they no longer are. We are a generation of caregivers. My mom doesn't think about how much I am sacrificing because she didn't go through this. All of my grandparents (3 sets) were gone by the time I was starting my own family. So holidays were always at mom & dad's. My kids grew up with that. Then as they started their families they eventually wanted to have holidays in their own homes. Meanwhile I had never stopped going to my folks. So what happened?? I never got to have holidays at my own home. Now my grandchildren are teenagers! It makes me angry that I got skipped. Now with Dad gone & Mom in AL, we (husband & me) feel obligated to make nice for Mom. There are times I just want to scream: "what about ME??!!" then I feel guilty... Again. 😧
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When I read three hour visit, I can't get the Gillian's island song out of my head. A three hour tour~~~~~~ how a simple three hour trip ended up stranding them on a small island for years.
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Reply to TiredReader
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Three hours is a pretty lengthy visit, Brdlvr. Is your mother's home too distant to make shorter stays worthwhile?

I understand the irritation you felt when she used to ask what the hurry was. On the occasions when my brother telephoned my mother, the first words she always said to him were "when are we going to see you?" - which he took literally as a request that he visit her, which made him feel guilty, which he resented. Not that it ever made any noticeable difference to how frequently he visited.

But you have nothing to feel guilty about - you're already spending much more time with your mother than used to be possible. Isn't it a sort of compliment, that she'd like you to hang around a bit longer?

I hope you do find a congenial volunteer, that would be great for your mother. But it'll still be generally true that no one is more interesting to a mother than her children are, however often she sees them.
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Reply to Countrymouse
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Thanks for the response, CarlaCB. I do believe if she had a volunteer she liked and with whom she could share her stories with, she wouldn't even miss that third visit of mine. I've heard the same stories too many times, and usually she's not that interested in my stories. I don't think she realizes how my life has changed. I used to get really irritated because when I wanted to get going, she would say, "So you're in a rush?". Fortunately, we had a discussion about that, and she said she wouldn't say that anymore. She does remember that she would do the same with her parents and how much she hated when she had to go see them, but now he shoe's on the other foot and she likes the care. I do feel guilty because she does try to be nice. She wants to take me to lunch and buy me things to compensate for my time, but somehow it just isn't the same as getting my own time back. Maybe I will get used to this new lifestyle and I won't feel so stressed over time. I do realize that she's 91 and I don't know how much time I have left with her. I will probably then regret all the things I've said and how I was in a hurry to leave her. That's why it makes this so hard to say I just want to come two times, not three. Anyway, we'll see if this volunteer ever shows up and maybe this will resolve itself.
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Reply to brdlvr1
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I hear you, brdlvr1. It's amazing how quick some elderly parents are to adopt the idea that an adult child should drop everything in their own life to be available 24/7. It seems appallingly easy for them to forget that you have your own life and needs and obligations, regardless of whatever may be going on with them.

The comment "I don't need outside help - I have you." sounds just like my mother. Setting boundaries is hard, I know. I think the only thing harder than setting boundaries with your parents when you're young and helpless is setting boundaries with them when they're old and helpless.

You need to believe in your heart that you have the right to set limits on your mother's claims to your time and energy. It gets easier with time, if that's any help. It gets easier with support, which I hope we can offer you here.

It may help if you remind her, repeatedly if necessary, that you still need to take care of your own life even though she's old now and needs your help. If she says "Why the rush?" you can always say "I have things to do at home." That is always the reality, after all. After you do her laundry, you need to do your own laundry. After you clean her kitchen, you go home to a kitchen that also needs cleaning. It is easy for elders to become very self-focused and forget these obvious facts of life, but that doesn't mean they can't be reminded. That approach actually works with my mother - maybe it will work with yours as well.

Good luck!
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Reply to CarlaCB
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I am fairly new to this caregiving responsibility, and it's only 3 times a week for about 3 hrs. each time. I know I don't have that much to complain. about compared to some of the other posts I've read, but considering I used to see her once every 6-8 weeks, and now it is 3 times a week, I can't help but feel that my old life has disappeared. I retired over a year ago and really enjoyed the freedom to do things I like to do, but now it's just about gone. I teach fitness classes in the mornings, then see her afterwards. I also volunteer one day a week. By the time I come home it's sometimes 4:00, about the same as my former work day. I wanted to get extra help from a volunteer through this special program, but she is not anxious to have it. She says why do I need it, I've got you? U fortunately, the appt. we had today with the volunteer was canceled. The point is, I want to do just two days and sometimes three. I feel very tense when I'm with her sometimes and she thinks I need to rest more. Well yes, that is part of the problem, but she's not connecting it to the fact that 3 of those days, I'm with her. How do I destress and accept this as part of my new life?
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Reply to brdlvr1
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I hate the uncertainty. The not knowing how longer this will be my life. When I was pregnant with my son, the OB advised me on my first visit that I would require a medically necessary C-Section. I told him that I expected him to provide me with the date and time when I returned for my second visit. I had everything planned out. I liked knowing exactly when my life would change.

Mom seems to be breathing her last breath one day and is improving the next. I am not in a hurry for her to go nor do I want her to linger but I want to know when.
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Reply to mom2mom
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I'm also in the "my life is on hold" camp. My life revolves around a 93 year old. I can't leave the house because he can't be alone and I can't take him with me, the way I could my kids, because he's too big to carry and is a fall risk even with a walker. He can't carry on a conversation. He only wants to talk about sex anyway. *sigh* I've found myself putting off my own medical care, but recently said "The heck with this" and scheduled a major surgery that will free me from my constant and severe joint pain. But yeah, putting my life and needs on hold for the dementia patient... the thing that bothers me most, because it hurt me the most.
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Reply to Susieshoes
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Being in another state and having only one sibling out of 5 taking care of both parents. guilty for not being able to help more.
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Reply to Jc45liberty
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kept trying to click the thumb-up on the burger and beer but i already had over and over lol.
Right now i am living with someone who has it hot in here- who sweats in the winter?ugh
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Reply to micalost
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That sounds lovely. I want to one day go out and daytime drink and have a nice conversation without worrying about the time when I have to return. Would be nice to meet up with other caregivers one day maybe at a bar for a beer and burger and complain about life in person. They are the only people that can truly relate to our circumstances.
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Reply to TiredReader
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I miss doing nothing all day. I miss being able to go out, have a bloody mary with dinner. I miss intellectual conversations.
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Reply to tggator
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There is so much I don't like from my past experience that I won't go into it here. Yes, it sounds like you have a very toxic relationship that must go. I personally would not stay in such a relationship from your description
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