What is the one thing that bothers you the most about caregiving?

Hi ycatms. I so completely agree with you. I’m not on Facebook except for the gaming. Don’t post a thing. So no one has any reason to block me. But. Hey can you return a text??? She is your sister. When you are in this city, can you call? I’m an only kid. I get it. It falls on me. A call , a text, any kind word would be nice. Not holding my breath.

I hear you, ycatms. Sadly, other relatives who offer no help are looking to me (as the only niece) to help them when my father “goes.” Bahaha!

My years of caregiving has taught “sweet considerate” me who “always helps” into a very calculating shrew who now knows how to say, “No” and is not be afraid to use it.

I hope to get in touch with my kindler, gentler self (and I will), but when he passes, I’m blowing this popsicle stand.

only001,
There is no shame in telling it like it is, your sentiment is well expressed and supported by me.
In fact, I love it.!

TiredOnlyChild: What you've stated is exactly how many of us feel - when we've realized we need to see our situation for what it is and try to make the best of it - most importantly - try to do something for ourselves NOW - not after our loved one has died. It's very, very easy for all of us to accept our daily grind as this is it, robotically crossing off another day on the calendar while yearning, dreaming of having our own life back - and imagining what we'll do when we do get it back. I'm tired of being angry about my situation...this negative energy is wearing me down. I have peace in accepting this is what my life is for now and I'm working on doing things for me - to better me mentally and physically - which means finding the balance in caring for Mom while also taking care of me. After caring for my deceased father and now caring for my very, very slowly declining mother, I have so much more appreciation for life and what it means to be living and not just existing. I'm working on my future now, like working on my small business and studying the prerequisites for my doctorate, but when Mom does pass away - I'm going to go WILD! In a good way, of course. :-) I'm going to get out there and take advantage of all that life offers. :-)

So grandma has just come out of the hospital for the 2nd time in a month, and have I heard hide ner hair from that no-good brother?? He asked me on Sunday what we were doing that day (I'm assuming in response to the post on FB that she was in the hospital again), and I told him that I was going to the hospital to be with her, and he asked when did she go, why was she there? I told him, and that was the last I heard from him!! And now I have "well-meaning" relatives, who do NOTHING to help me out, hounding me about putting her in hospice care! She's not ready for that, at least not when she's feeling better...she's down for a bit after she's been in the hospital, but who isn't worn out after being in the hospital for days?? And this morning, I got the call from one of them - 2 hours on the phone - trying to explain how she's nothing but a Large Baby, and she doesn't know what she's doing or saying...well, my thing is if she spent ONE DAY with her when she's feeling well, she would know how WRONG she was!!! She says how confused my grandmother is when she talks to her (my cousin), but my cousin talks 100 miles an hour and about just stuff that my grandmother doesn't understand, nor does she find it interesting, so OF COURSE she doesn't understand it...she's not engaged in the conversation. How often do you make sense about a conversation that you're not engaged in?? I want to keep the home health agency as long as I can because they bring PHYSICAL THERAPY that HOSPICE DOES NOT DO. At some point, that isn't going to matter, but right now, I think it makes a difference in her life. But the bottom line is, if the rest of these so called 'INTERESTED COUSINS' (to me, nieces and nephews to Nana) were so concerned about her health, they could be giving me some help, doing things with her if they think these are her last days, etc., instead of spending HOURS upon HOURS trying to talk each other and then myself into the best thing for her being HOSPICE rather than the PT that she gets from HH. Granted, I would LOVE, LOVE, LOVE, to have someone to help me when she has to go to the hospital and make that smoother (because this last trip was a DOOZIE of a NIGHTMARE), but if my brother would just come and help me and buffer me from some of the stress, that would help with that as well. But I'm not getting either one of those dreams to come true, so I will just plug along at this pace until it's time for her to go, which with GI Bleeds in a month, I don't think it will be too much longer and then I won't have to deal with that a-hole again...P.E.R.I.O.D. E.V.A.H. A.G.A.I.N!!!
And like @CareisGiving, I'm going W.I.L.D. as soon as this ride is OVER!!! I'm planning on moving to the beach - I'm on disability, and I have 2 jobs that I can work from home, and I can do EVERYTHING FROM A BEACH HOUSE!!! And I FIRMLY believe that God has a WHOLE NEW LIFE waiting for me when I get there - FRIENDS, A NEW MAN - just waiting on me to walk into his life and take care of me (because I have been taking care of everyone else for my WHOLE FREAKING LIFE), and a job with a not-for-profit that I am going to L.O.V.E.!!! I cannot WAIT!!! I can almost dream about it, but I don't dare because I don't want to be disappointed when I get what I've always dreamed of, when I know that what I'm going to receive is what God knows is best and right for me. So, I just know in my heart that it's coming...but I may have a few cocktails, and a few romps in the hay along the way!

I get it ycatsms. I get it. Some how , we get in this role of caregiver. Whatever the circumstances are/ were. And family members continue to disappoint. Just really wish they didn’t judge or offer advice since in my case they don’t see their sister / aunt. So maybe it’s better to realize their statements/ opinions are useless and try not to be offended

ycatsms it's obvious that you are beyond frustrated, and this is one of the best places to vent. Trust me... we get it.

Caregiving can literally drain the life out of you if you let it, and the "well meaning" family members can take their toll on you quickly.

It has been helpful for me to go minimal contact with my family for the most part. They were dysfunctional before the care giving and it seems like Dad getting "sick" just made it worse.

Just know that you don't have to engage with people that don't or won't understand what you're going through. Everyone has opinions when they're not in the heat of the battle. Keep communications short (everyone doesn't have to know everything) and do the best you can with what you have to work with.

We're walking the same path you are so come here to vent when you need to. This board is awesome.

THANK YOU THANK YOU @Tinyblu and @Erinm60 and all the others that have listened to me vent and said kind words and lent an ear, and if you stepped out to offer encouragement. You're right, I DO NEED TO VENT, and this is a GREAT PLACE to do that, if y'all don't mind. My little separated plate we used to eat out of so our foods wouldn't touch? Well, all of my compartments are OVERFLOWING and I have 0 (ZILCH) help. So it just does me good every so often to be able to get on here and vent a lil while if y'all don't care ?-) It's so comforting to know that I'm not the only one with a mean old lady for a grandmother...and a hateful, POS for a brother, and family who does nothing but tell me how to do what I don't think is necessary, but if they would do SOMETHING to help me, we would't be sooooo stressed out all the time. But knowing other's are in the same boat is helpful...don't know why because I wouldn't wish this existence on MY WORST ENEMY!!! Maybe it's just coz I feel like I'm not alone on this roller coaster. So THANKS for 'LISTENING' and for always being constructive with advice and for just saying, HEY, WE HEAR YOU!! I hear ALL OF YOU, TOO, which is what makes me feel comfortable enough to write.

You are welcome ycatsms. Hey we all need to vent. “ This ain’t easy”. My moms not mean , just so dependent and I feel like an indentured servant. It’s really difficult for a lot of us. Vent away here. Got to add I wouldn’t wish this on anybody either 

I think the thing bothering me most is my mom overly everyday making the same excuses n the Dr. Says she has just ignoring and it's an endless cycle but the more she says she ignores or treats me like a robot she keeps doing it so why admit it if she isn't going to stop cus it depresses me terrible n how can I take care if anything w her if I'm basically rock bottom depressed

That I don't even like my parent anymore, and it makes me feel awful

That I’ve done everything for nothing.

Mann, this is a trick question right!?, lol, I have never felt so abused in my whole entire life! It's like being crapped on everyday!, if not one of my parents, then one of my relatives! I HATE FEELING LIKE A SUCKER!, I HATE FEELING THAT MY LIFE IS LESS VALUABLE. I THINK WE ARE UNDER VALUED AND THAT HURTS... Our TIME IS NOT APPRECIATED...WE ARE NOT APPRECIATED...THAT SUCKS! There it is, but I will continue this journey with my mom for as long as I can...BECAUSE I LOVE AND CHERISH HER...I AM A SUCKER! I SAY IT LOUD AND PROUD!

Rosemary - I understand. There are times after I've cleaned poop, and I've cleaned everything - including me, but I swear the smell still sticks to me in my head - and I want to burn the clothes off of me, burn down the house and just start over. I feel like it's permeating the walls. I smell it in my sleep - three rooms over. And then there's FOG - fear obligation guilt - where I feel so sorry for HIM because he's aware too, and I'm sure embarrassed.

Choose just one problem? Ha. Here are my main issues, and they aren't necessarily in the right order!
1) Being disrespected by my Mother-in-law, who has Alzheimers.
2) Her incessant whining and complaining
3) Her spitting and slapping
4) Her attitude
5) Her lies
6) Cleaning up poop off of every surface in my home.
7) Other relatives' bad advice and scorn about caregiving, when they can't even visit their own Mom in an ALF!

The Turkey has been made and the weekend is not over. But everyone is leaving taking different ways home and side road trips. I am here. The fallout will be for a few weeks on my end. Mad confusion for my mom. Just about the time it's back to normal, it's Christmas. Oh please Mr. Santa. I just want a road trip and get to drive off too. But alas, I too am a sucker for love and my mommy. Drats!

I think many our Mother's enjoy being fussed after. Mine admitted as much. She admits she is spoiled rotten by me but always focuses on what she doesn't have, what she thinks she needs, what she is running low on because SHE has chosen to alienate everyone from her life except me. I hate it. We were never close growing up, she favored my brothers. She would tell me she had always wanted 10 boys. My father ( the drunk) left her when I was 2, leaving her with 4 kids on her own. My brothers were incorrigible. She would accuse me (as I got older) of being worse than all my brothers put together of course having no knowledge of the things they were doing, nor caring why I was acting out in my own way. I often wonder why she chose me to be her caregiver. Maybe because I was the most level headed, responsible one out of my brothers. Maybe because she knew my brothers would shove her into a home. When she asked, I did not know how to say, "No" knowing what would happen if either of my brothers were responsible for her. Many days, I wonder what the hell I was thinking. She is driving me nuts. Slowly but surely, I feel my sanity slipping away. If she ever has to go to the hospital, she LOVES having them waiting on her hand and foot and being sooooo sweet to her. I just can't do it. She is capable of many things on her own and I refuse to pamper her anymore than she already is. If she ever gets to the point where she does need everything done for her, feeding, dressing, toileting, I will have already burned out to the point where I will want nothing to do with it. I dread it. Her dementia has made her unrecognizable from the Mother I grew up with minus her amazing ability to throw out the famous "guilt trips" like, "I wish I wasn't a burden" and " I pray the lord takes me everyday" and "I will just keep my mouth shut" when she repeats the same crap over and over at nauseaum and I get irritated. I need to hear that like a hole in my head when I have sacrificed my career, strained my marriage, my physical and mental condition just dealing with her constant wants and needs. I am getting so very tired but she cannot afford nor is she is any physical need to be in a home. I feel so stuck. Who knows how much longer this will continue, if I will survive it with my joy of life still there, if my marriage will survive it. She too was not wise with her money hence why she is with me.

Having caregivers in my home all the time and that they have made three unfounded complaints to APS about me in the past 12 months. I don't feel safe in my own home now and feel like I have to let my husband verbally bully and abuse me when ever a caregiver is around. If I stick for myself and yell back then I get accused of being abusive. :( I'm getting so depressed as a result of this.

Well 4 yrs ago is a long time ago. My mom died, an l am no longer a caregiver. But l have to say l am struggling with getting myself back to some kind of normalacy. ..so be careful of the choices you make. There are so many things my mom did, like fall on the floor. Mom's Dr. said it was a control issue. She would fall an just melt to the floor, never got hurt. l never saw that before, but it made my life difficult. Ma was 170lbs. an me 110, with severe osteoporosis, so l now live with many injuries trying to get her up off the floor....no help. I did many stupid things as ma progressed in her disease, but that was the toughest one for me because of my disability.

Me too Hope and I am no longer a caregiver either for my Mother,but I did a lot of things that were hard on my body too like you when I was caring for Mom and I am paying for it now.
Mother always wanted to go and do,so we went to garage sales a lot and I lifted and loaded the heavy wheelchair and Mother's oxygen tanks in and out of the car,sometimes 6,7 times in a day and I have a small frame and arthritis all over and I knew at the time it was hard on me physically,but she was on Hospice and I Loved her,so I did it anyway.

What bothers me the most about caregiving , besides there is no end in sight is that my mother lies . She’s capable of dressing / bathing, etc. can write a check. Sometimes easily , other times not so. The extreme dependency on me. It’s maddening. We went out for Thanksgiving with her family. They talked about their childhood. It was good for her. It was buffet. She of course sat next to me. Had no clue how to walk 15 feet to desert table. So I took her up. Maybe I was mean, but I asked her to try and find her way back to our table and she did. With no problem. I am so tired of “ learned helplessness “ Yes she has been diagnosed with dementia. But she still functions fairly well. I have a hard time with her never leaving the family room. Fox News 24/7. The sense of entitlement she has is unbelievable. I don’t know where I’m going with this , but I never in a million years , expected her to be so dependent. The lies she states are to cover her unbelievable scrutiny of what / where I am. Example. If I walk the dog, she goes outside to see where I am. I’ll ask. Why are you out here? Her response is fairly believable. Which proves to me , she is not as bad , cognitively , as I thought. It’s that she has no one else.

The thing that bothered me the most is that caregiving sucks the very life right out of you.

1.You loose who YOU are and spend all your time catering to someone else's needs.
2. Your personal relationships suffer or terminate because you have no time to cultivate them.
3. You put your own physical, mental, financial, emotional and spiritual needs on hold or give them up altogether.
4.You become "mind numb", unable to participate in life (as you knew it) except to say what kind of day Mother had.
5. You are expected to smile and be courteous through physical and verbal abuse from them "because, after all, they have dementia and don't know what they're doing."
6. That you can never take your eyes off the person you're care taking lest they fall or get into something dangerous.
7. That there is no such thing as 8 hours sleep anymore....or 6 hrs., or 4 hours.....
8. That for some of us, we are caring for people who were not nice or good to us growing up.
9. We are living in 2 separate worlds. Our LO is in another "time warp" that we can't enter nor can we really understand it. They have left our realm and can not return.
10. How this is a very self oriented disease and we have to be self sacrificing to caretake.

Wow, that was way more than the single answer you wanted! 😮 Sorry, it just came pouring out.

Caring for a dementia partner is the nightmare we all fear. We get to be seniors and wait for the shoe to drop. My mom passed 1 1/2 years ago, for the first time in 20 years sis and I are not caring for her, worrying about her - she is in a better place, my dear mom.
We are seniors ourselves and worrying, which one of us will need the care next and if there will be money and someone who will be there for us. My heart goes out to all of you caregivers.   Why are there no affordable places for dementia patients when the government supports non citizens or people who have paid nothing into the system? Why, when our time comes and we need full time care does it fall to the senior spouse to provide it or pay everything they have accrued over their lifetime to either a private facility or in home caregiver. One choice leaves the surviving partner completely exhausted or ill and the other leaves him/her penniless and unable to afford their own care.   Just saying there is something really wrong with the system! 
Also, isn't it sad that transitional independent living homes are more expensive (huge buy-in, plus huge maintenance fees)  than what we are supposedly "downsizing" from when we don't need care yet.  So many of us would love to move from our large houses to a smaller place, yet we can't afford it.

SueC,
Wow! You really nailed it. I was just nodding my head going down the list of what you wrote. I am becoming more "numb" to the usual daily irritations, I now try to get one step ahead of a lot of them so I don't have to hear about all her wants and needs as often as she tends to bring them up. I worry more that I am kind of detaching in the way where I just don't give a damn anymore. How many times can you tell your Mom the same things only to have her just ignore you? She did this even before she got dementia. I can prove she isn't mentally gone because if my husband say's something to her, she DOES remember! I think she is somewhat intimidated by him because he does not give into any nonsense. If I say things to her, she conveniently forgets my many requests regarding her safety, etc. and plays the poor, helpless creature that needs to be waited on because she cannot drive anymore.
When I was a kid, I had no car, no money, totally dependent on her but believe me, she did not run out and get my whatever I wanted when I wanted it. I never expected her to! I learned to live without a lot of things. I learned I could not count on her to protect me when I needed it. I felt the sting of her hand or the whip of the belt on my rear when she was not happy with me and her telling me she didn't like me and hoped someday I would have a headstrong child just like myself.
Now, she has no recollection and is in disbelief of who she was and how she behaved with me when I was growing up. I moved out before I was 18, I wanted to get away from her so badly. It wasn't until I was in my late 20's when she changed her tune towards me. My oldest brother ODed, and I was the one who stood by her, supported her, got her to go to see a therapist and then join a support group to help her get through the awful tragedy of losing her first born. Not my other brothers. Now, she looked at me in a new and different light. Suddenly, I wasn't so terrible. I was there for her when it counted. Not something I could ever say about her.
If she does something stupid, I have given her every tool at her fingertips to help her, including sacrificing my entire life but I cannot and will not watch her 24/7. Whatever happens, happens. I cannot spend more time worrying myself to death that she might be doing something stupid. Even in nursing homes, they are not completely safe.
I long for my freedom back.
I want my life back.
But, too late to turn back now. I will be a washed up, worn out, cynical curmudgeon who will likely not be able to just pick up where I left off because of my physical condition and years out of my career. Who would ever want to hire me under those circimstances? Old, years out of the workforce, and a physical wreck. The odds are not in my favor. That thought alone scares me more than anything, there won't be much of a future left for me when my caregiving days finally end, whenever that will be. I threw my 40's out the window.
To the many others that contributed to this thread, thank you so much for making me realize even my most morbid thoughts are not abnormal when there are more of us out there going through the same things and feeling the same way. Many of you were spot on as well on your points.
It isn't fair this is done to children and families get torn apart. No help unless you and your parent are flat broke. You spend everything they have until they are broke. What a great system.

Rainey,
I think we (the caregivers) need to be clear on one thing. We can NOT give up our lives, caring for anyone. We can not cease to exist as we support and build up the demented or disabled person. Caregiving does not provide a salary, medical benefits, vacation and sick pay as other jobs do. We need to be responsible to OURSELVES to have enough free time and make it happen however we can to take care of us, 'cuz nobody else is going to!

I wonder how much longer my (just about) 95 year old mother will "survive". I won't call it living, even though her health is great, but mentally, she is just existing. She is never happy or content and is constantly griping about this or that. We tried to take care of her at home 2 months ago but, even with two of us, we were exhausted and ready to explode. We were not prepared to live with a person so out of touch with reality with such erratic and aggressive behavior. She is back in a memory care facility. I'm not thrilled with the place but it will have to do. She doesn't qualify for Medicaid and we can't afford anything fancier. She doesn't seem to mind where she is, actually she has better behavior there than when she lived with us.

I'm just about 61 and I wonder if mother will still be alive when I retire at 65. Please don't take this wrong but I hope not. I don't mind that I've helped her for the last 4-5 years but I am looking forward, after retiring, to taking a course to teach English as a second language (we'll retire in Mexico) and pursuing gardening, traveling, cooking, and donating time to worthy projects. I will not be able to relocate with my mother still alive.

You're right, we won't be able to pick up from where we left off, but we can start a new life with fresh experiences. Yes, we age each year and God knows, I've got a lot more (minor) ailments than I've ever had but I refuse to say I'm washed up and worn out. That is too high a price to pay for a mother I never got along with. We caregivers can still "go for it" when we're freed from our responsibilities, even if it is with a cane or pain meds or if we can only last 2-3 hours before having to take a nap! Don't give up!
After we retire and find our ideal location, (Puerto Vallarta, Guanajuato, Puebla) I'll invite you to our casita and we can go "boogie" as older but reenergized ladies. ;)
Hang in there.

Rainey, I am almost 67, and my mom is still in her own apt, gets a lot of physical help (not much from me) and is just beginning to have memory problems - from her pain meds, she insists - who knows? Certainly not her (new) doctor... So if she gets worse, God forbid, and lingers on and on, I will not even try to live with her, we tried that, and she and I were like your mother and you, so it didn't work. Nor will I manage all her affairs, if she would even let me, nor stay in this town the rest of my life for her, because I have a much younger husband, and that would be very unfair to him, who helps as much as he can already. I am too old for all this, and my husband says it stresses me too much, so I am letting her social workers, doctor, and weekly RN manage her, and just helping her a bit around the edges, and talking her her on the phone several times a week. It is what I can do, and it seems to be enough; I don't want to put my marriage at risk, or my own health. Surely there are ways to make your life easier and less stressful before you burn out.... that goes for several of us here.

Thanks everyone but if there was a financial choice, I would have done so. Mom is thrilled to have me handle all her affairs for her without arguement. She cannot afford assisted living. She worked as an RN in those SNF's all her life. She was actually the director for many years! They are a fortune in California. She would have already been broke by now, I have crunched the numbers since she moved in with me. Then what? She makes too much in SS benefits to qualify for Medicaid. When I mean I am stuck, I really am. I am trying to stretch what little money she has for however long she lasts. If I do get to the point where I need to have outside help, hopefully there will be some money left. Really, I am just in need of venting, there are no other available options at this point in my life. I appreciate the suggestions, but I just have to deal with it the best I can and coming here to talk it out really helps.
AmyGrace was right about not being able to afford it, facilities around here where I live are anywhere from 6,500.00 (small shared room) to 8k plus a month. That does not include any specialized treatment like lymphedema which Mom has in her leg from a prior cervical cancer surgery. I take care of it and it requires constant care. If she had to pay a specialist on top of the monthly facility care, she would be closer to 10K a month!
Myself, I have a bad back from a old, serious injury. It has morphed into spinal arthritis, hip bursitis in both hips and sciatica. I am already on pain meds, of course just enough to barely function as the Gov has cracked down on that too.
Thanks for listening, I appreciate it. These vents are mere glimpses to the whole story and we just have to do the best we can under the circumstances we are given.

Trapped is trapped. I’m trapped. My mother has long term care. I just can’t tell her that enough is enough because I guess I’m not there yet. She was good to me. She is good to me. I am and was good to her. She is a fraction of who she was even a year ago. At this point , I hate my day to day existence. I hate it. I do. But she wanted to abort me and didn’t. So I owe her. She also was fun, pretty , smart. Kind. She was great. She now is aging so quickly, and I’m on pins and needles. I have forgiven the almost being aborted. Because I had / have to. She made up for that. She was young. Ok that was 58 years ago. I’m here I’m alive. Thank you Mama. But getting to hear and now, I just can’t have her go to assisted living or memory care, because I am here and she would be devastated. She’s bad , mentally, but not that bad, where her heart wouldn’t be broken by that move. So I am getting help. Nurses coming in when I go away in a couple weeks.

I just treated myself to a 1 1/2 hr massage. Oh it was wonderful! I was not thinking of any of my problems or stresses for that short amount of time. Maybe, just maybe I won't wake up in such agony tomorrow morning! One can only hope.

I dread coming home to my Mom most days after work. I know that as soon as I walk in the door I'll have a poopy commode to clean, and she'll start telling me the million other things I need to do before I even sit down from working my other full time job. I'm 31 and have taken care of her for 7 years now. I feel like my life is not my own at all. I feel like I can't even make decisions in my life. I'm 31 and have to ask permission to leave my house. I can't even take my kids to the park without asking for permission sometimes. It's also the "fits" she throws the guilt trips that she says she doesn't do. She the only person I know that threatens to go to the hospital if I don't get her chocolate breakfast shakes to have at all times. My mom is all there mentally it's just physical issues for her. She listens into conversations my husband and I have unless we whisper really quiet. It's Friday night and I'm sitting at home waiting to hear what I need to do next.