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

My Aunt pretends like she doesn't know anyone's NAME BUT mine!!!!! And mom acts like I am the only one  who can do anything! There it is I said it ! 

When your trapped, there is little joy to grab.

Cheers!! We are not immortal. We aren’t getting these years back. For me, it’s trying really hard not to feel trapped. I guess most of us do. I get zero support from her siblings , but a lot of advice of what I could do better. That’s really getting on my nerves.  Come visit her ,  call maybe more than 3 times a year.  

Tired, yes, yes and yes! I am tired of living for my parent. Life is too short; my life matters.

As caregivers, we put others first. This is simply wrong. Our lives matter just as much.

Here’s to grabbing joy!

I also feel this disconnect between what people say about me, and what I know are the thoughts in my head. After another horrible week, I was sitting with the nurse who assesses what we need for home health care - and for the first time I've ever seen - Dad fell asleep in front of us - literally less than two feet - and then stopped breathing. We looked at him and both of us thought the same thing - she jumped up and rubbed his chest and I yelled, Dad! DAD! - and he awoke and said, you two are crazy, I wasn't sleeping - let alone not breathing. But here's the thing. When I realized he wasn't breathing - for one split second, I thought, Dear God, let it be over - before jumping into action. So I do the right thing, over and over and over again, day after day after day. But my thoughts.....Today, I had a mini breakthrough - I thought I need to stop living my life like it's on hold until Dad is "resolved" - either by getting better (unlikely), nursing home, or he passes. I need to accept that THIS is my life. My life is NOT on hold. This is it. Live it well. Live it with love. Because none of us have any idea how long we could put it on "hold" and then die ourselves. In some way, I hope this helps me get a handle on the stress. I hope it's not just a really nice thought that gets shoved to the side when I'm changing disposable underwear. But I am going to CONSCIOUSLY start living my life in a way that I'm going to grab every single moment of joy wherever I can - because there's no guarantee there will be a time when I am "free" again.

@Rainey69 - OMG yes, the frustration of trying to do the "right thing" and having mom sabotage it like a child....yes, yes, yes. Except unlike a child you can't just send them to their room to have a think about what they've done! Plus they can't learn from their mistakes like children. That's partly where my frustration comes in. It's like....I dunno, it's like you have to be this authoritarian but with no actual "parent power" to enforce the rules.

Dorianne,
I "see you" meaning I can understand much of what you are saying, your inner thoughts, feeling invisable, people telling you how great you are doing with Mom but they have no idea. The longing to be free again. I did not have children either because my family was so dysfunctional that there was just no way I wanted to roll those dice. Since I am the only daughter, Mom chose me to be her caregiver. She was never an alcoholic, more an absentee Mom who had to work to support 4 kids on her own. My Dad was the alcoholic and left her when I was only 2. She had to go back to work so I never really developed a deep bond with her. There was actually a time we could not stand one another when I was the rebellious teenager demonstrating my angst and frustration from the abuse that happened to me while she was away at work from one of my siblings. Lots of old anger and resentment comes out when they act like the child who ignores and fights you when you are just trying to do the "right thing" and trying to smile while gritting your teeth.

I hate that I have to be the adult, the parent to my mother - and I hate that I have to do it AGAIN. I already did this. My mother was an alcoholic until I was 17. I left home at 18. We haven't lived together since, until now. I had 30 amazing years of freedom from taking care of her. And the worst part is - part of her dementia personality is exactly like her drinking personality. I get triggered all over the place. And then she will do dangerous things (like light paper on fire), except I'm not a kid who will put up with my mother risking my safety anymore. Or she'll try to get out of going for necessary medical treatment and I can't just drag her like a screaming toddler (I called the ambulance one time to take her and she's only fought me once on it since). She'll say she's not hungry when I've made a nice meal and then eat crackers out of her purse 2 minutes later. The dangerous stuff....we end up having these huge battles in which she plays the snotty teenager who hates her "mother" for trying to control her. There is a gouge on the dining table, from where I slammed my heavy ring of keys down in frustration during one epic fight over the smoking/safety issue. I never had children because I was too burnt out from parenting my mother the first time. Now here I am. All the advice books just say you have to be patient and kind, and just sort of suck it up and do it all. But I'm not feeling it. I can put on a reasonable show of basic caregiving, and sometimes I can give her affection. But I feel like I'm faking it most of the time. Sometimes I snap at her. Sometimes I don't even want to talk to her, because she's already driven me to the brink and I know I'll snap - then she stares at me and gets up in my face trying to make flip conversation and asking me what's wrong (when I most want to be left alone). I know it's not like the drinking days; I know intellectually this behaviour isn't her fault. But I resent her all the same for putting me through this again. The social worker, the home support workers, the nurses....they all tell me I'm doing a great job, but they don't see the "me" I see when mom and I are alone together. This "me" is angry, resentful, kind of cold and often silent. This "me" is the one who listens to heavy metal and hides out in my room, dreaming of a future where I am finally free.

Princessblue,
So sorry but I can empathize. I live with Mom and husband, Mom has her own place 10 steps away which is the only thing allowing me to keep my sanity, seperate spaces but she cannot be trusted to be on her own anymore. I too have 2 siblings (brothers) one is a worthless leaching nutjob and the other lives in his own universe, always has. Both live within a half an hour away. The nutjob I ousted because he only came over only to extort money from Mom, the other has shown up a few times over the years on holidays to drop off a cheap little gift to alleviate his guilt. At no point had either of them ever asked her or myself if there was anything THEY could do to help out. Not surprising.
I was the expendable one. The one to give up my career, my life and freedom. Since I have only been married coming up on 4 years, we never got a honeymoon, we got my Mom. She too always needs something. That is why we live with her. She cannot drive, she has dementia, cannot handle her finances or anything that requires real thought. It's all me. Yes, I struggle with patience, I struggle with my own health issues and am the constant caregiver and the cook, the laundress, the gardener, the chauffeur, the accountant, the fixer of broken things, the housekeeper, the shopper and I care for her lymphedema in her leg from a prior cancer surgery, etc.
My husband is the breadwinner. Without him, none of this would be possible and she would have been broke by now paying for all this care. She was not smart with her money.
She has refused anyone else in her life, I have offered to take her to senior centers to spend time making new friends, Nope. Offered a group specifically for people with dementia, Nope. Friends have reached out and she asks me to make excuses for her why she does not wish to see them anymore. I am the only one she wants to care for her. She is too embarassed to be in anyone's company because she knows her brain is going and she is very self conscious about this.
Keep ignoring your absentee "know it all" brother unless he wants to care for her while you and your newly betrothed go on a well deserved vacation. Let him live it or he can keep his opinions to himself.
I feel your frustration all too well. At some point, it will not be safe for her to live alone, do you have a plan? Hopefully, you have her legal affairs in order. That is critical.

That it’s all up to me. I have two siblings who have never once offered to help. They both live within 150 miles and they haven’t even visted in three years. One brother calls my mom at least 3 times every single day and thinks he has a handle on her issues and attempts to give me advice. I was working full-time for 5 years and taking care of mom’s needs and taking care of her 1 acre property all by myself. Only occassionally could we afford to hire someone to do the yard work. And this was all before mom’s physical and mental decline. It has really gone downhill in the past year and so the demands on my time, energy and patience are at an all-time high.


Now, instead of 2 - 3 times a week that I visit mom (she lives alone), there seems to be something almost every day that needs my immediate attention. I can’t even have an evening out with my husband in peace (at 66 I’m a newlywed of 6 months). I ignore the calls from my brother, but I have to answer all calls from mom because at 84, I’m all she’s got and it could turn out the be a real emergency.

Oh AND mom refuses to let me bring in any outside help!!!

luckylu (((((((hugs)))))

Just a few hours before Mother died,all that mattered to her was that the Christmas presents were wrapped and Christmas morning would be all ready to go ...I wrapped all night until the family came in Christmas morning.I never went to bed and All I wanted to do was hold Mother but there wasn't enough of me.

What bothered me the most was that there was never enough of me and I never stopped and never got done and all I Wanted to do is just be with Mom..

Ycatsms,
You are not alone! A little different situations but a lot of similarities to understand your frustrations. Vent away. Glad the hotline helped. Mom is nice, but very passive aggressive. Never listens to me and remembers what is important to her and forgets everything else. I miss my freedom, my career, my marriage and myself not being stressed, and watching my life pass me by. I feel guilty wondering how much more of my life will be spent trapped like a rat because neither of my siblings are involved. I feel selfish but I never imagined life being put "on hold" indefinitely caring for my Mom who is slowly but surely losing her mind.

UPDATE...I saw on here that the alzheimer's organization had a 24-hour hotline and I was sooooo frustrated the other night (a few nights after that rant the other day) and I called it, and they said that where I thought we were in the beginning stages of dementia, we are actually in the MIDDLE, and that when I think she is being mean and vindictive, that may be, but it's not on purpose and she doesn't really have the mental capacity to be vindictive. So that opens up a whole new chasm...I mean, not only do I have to deal with the behaviors, but I have to because she doesn't know better, and there's nothing I can do to make her stop...can't punish her for being mean and vindictive!

She went in the hospital on Saturday with a GI bleed, and of course my no-good-brother was nowhere to be found. She's fine - apparently a diverticular bleed and it healed itself...but he didn't even call!! And now, he did call today and said he would be coming home tomorrow, and now - after I have been dealing with this all week - working and going to the hospital, etc. And now that he called, she is over the moon! I just cannot deal with it!! I read another article that was on here yesterday - I'm spending A LOT of time on here these days...and it was talking about the struggles between siblings when taking caretaking...it spelled us out to a tee. My therapist says I should just let it go, but it is sooooo hard when I do EVERYTHING 24/7/365, and he does NOTHING, and when he calls - it's as if the WORLD STOPPED TURNING!! And God forbid him to show up ONCE IN A YEAR!!! Folks in Hell will be SHOCKED tomorrow - I tell you - because it's going to start SNOWING THERE...And she's going to be SOOOOO EXCITED TO SEE HIM, and it's as if I'm not even here! And don't even get me started on my Dad!!! He was making excuses for him saying that he works, and that's why he can't call or come home!! Are you F-ING KIDDING ME??? I work 2 JOBS, and I TAKE CARE OF HER!! They have always made excuses for him and that's why he is the way that he is...but if he does, by some MIRACLE IN HEAVEN show up tomorrow, I will have to BITE MY TONGUE and be nice while he is here - or maybe I will go somewhere and get a hotel room while he is here just so I don't have to be here and he can have some responsibility for ONCE!! I think that's a GREAT IDEA!!! FABULOUS!!! Just to get out of the house for ONE NIGHT is a BLESSING!! So that's it...IF HE COMES, and as I said, just bc he said he's coming doesn't mean he will show up - there will be PIGS FLYING SOMEWHERE, so you might want to get your cameras out and watch the sky - I'm OUTTA HERE!!!

BTW...thanks for listening...and if you have an elder that you don't understand, PLEASE CALL THE Alzheimer's HOTLINE 877-506-9026 - it was a GREAT resource for me the other night just to help me understand some of her behaviors...they are sending me some literature on the disease so I can read up on it, but just to be able to talk to someone who knows what you are going through and have them listen...it was SOOOOO helpful. But then again, I've been in therapy for 30 years (since my Mom got sick with cancer and we lost her) so I'm used to talking things out with others....

Now I know who Tim McGraw is, sings with his wife in their new album. Nice!

My mother was the same, maybe part of the disease, but you are the one that is responsible for taking care of you. You have to take breaks an do what makes you happy in that apmosphere. My mom, was always self centered so it was not suprising to me, but that does not dictate you not taking responsibility for your happiness. IF you can't do that get out....it will not be benificial to either of you! Thanks, rake care of you either way.💝

Having to give up the career I so loved.

Nothing. I woudn't change anything. NADA. I am never tired/never thinkin' anything but how blessed i am for the years i am still having with both each healthy blessed HAPPY happy dia y' noche con mi familia y' mi padre y' madre.(i said night and day with my family, mommie and daddy.) So, nothing bother me at all, the enter over a year and months now i am here, enjoying each split second/each minute and we just actually took another in-town ride,today,soon going out of town to see more family and i can't wait. Love it.and i have ZERO bothersome moment, i love them so much and glad each day dad continue to get stronger/better for just about 1 year now.God is good.Life is good,thank you lord.and Amen.
Good night.
adios.
God bless us all.

Wow--read through so many posts and feel lucky to have stumbled onto this forum. My husband and I have had my 97 year old mother living with us for 6 years. There has been 3 of us in this marriage for a very long time. She is mean , ungrateful, and nasty. What bothers me is that I long for the freedom my husband and I had before she came: traveling, going out to eat, theater, etc.

This is so hard because my mom is now with me and the same things I heard her yell at my father that had dementia about she is now doing. The roughest thing for me is she is making demands and pretty much telling my husband and I we are taking things we bought for her in the first place, such as a cell phone and TV remote. The other thing would probably be that my brother is in such high regard with her....he spends pretty much no time with her and we are with her any hours we are not at work. Her time is very limited and I try to get past these things, but it can be hard. I spend a lot of time in prayer.

ycatsms - I hear you loud and clear! My mother is VERY similar. They (whoever 'they' is), say that dementia makes people revert back to being like children, so I started using some of my child-rearing techniques on my mom. 1) Giving her choices instead of telling her what to do. Example: "Which pair of underwear do you want to put on" and give her a choice of two or three, then praise her for the choice. Hopefully she'll be so caught up in the choice that she won't think about the fact that she's taking off her 'Depends'. You could also try to use reverse-psychology on her and say things like "don't wash your hands, you don't want to have clean hands, ewe" and see if she washes them just to spite you.
Some of these things have worked for my mom - but everyone is different.

Also, tell your 'good-for-nothing brother' (I have one of those too) that he either needs to come spend time helping or she will be left alone, because you have things you must do - like go to the grocery store! But then go do something fun for your self!

Also - screaming into a pillow really does help!

I moved in with my parents 1 year ago (sold my condo). My mother has Alzheimer and my dad was diagnosed with metastatic cancer. At this point my dad is on hospice care at home. Needless to say, it is a challenge! Luckily, they scrimped and saved so they can pay for care in their 'older years'. We have care that comes in 9 hours a day while I'm at work, but before and and after work it's all up to me.
Even though my dad is less functional and is having some cognitive issues, at least he is still reasonable. Last night my mom took a very sharply pointed pair of scissors to bed with her, when I took them away from her, nicely telling her it was way too dangerous to have scissors in her bed, she got extremely upset with me and told me if I ever did that again she was going to "stab me to death with them". The day before she threatened to stab me with a knife because I had dirty laundry on the floor in front of the washing machine. I'm not at all worried about myself, but I do worry that she'll get mad at my dad and try something - and he won't be able to defend himself! But probably my biggest frustration is the fact that she thinks she does all the cooking, cleaning, etc. - and she doesn't do anything but get in the way, undo what I've just done and completely denies anything she's done wrong - like spilling a drink, flushing her 'Depends' down the toilet or even wetting her own pants because she took her 'Depends' off. Please laugh! When someone obviously wets their own self, and then says "I didn't do it, someone else must have" you have to laugh! (not at her of course) If I never hear "I didn't do that" again in my lifetime, it will be too soon!
Sorry for the rant - but I have a feeling most of you can totally relate!

Ycatsms,
Happy 48 th Birthday Sugar! Go get your cake and eat it!🎂

Thanks, SendHelp, for the Birthday Wishes! It's Tim McGraw!! He's the ONE thing that gives me stress relief! I go to his concerts in the summer, sometimes 3 times during the summer...even if I have to go by myself! But I LOVE it, and I always have a GREAT time...and as my ex-husband used to say, it's the one time I can just let my hair down and have a good time. I've been to 16 of his concerts! And I have a couple that I travel with in the Southeast who I met at a concert in Tupelo, and we just go together coz we just love him so much. But if they can't go, too. I go by myself! He's AMAZING LIVE!!

Thank You JesseBelle! That means A LOT!!!

Amen, we hear you, ycatsms.

I couldn't help, after reading so many of your responses, I decided I would just add one more...This is NOT JUST ONE. so PLEASE IGNORE if you choose to...it's more of a VENT SESSION for me...I just needed to let out some stuff...THANKS in ADVANCE

1. Isolation - I would LOVE LOVE LOVE to have some friends, a boyfriend or significant other

2. Abuse - she knows how to push my buttons and does everything she can to push them, keep me upset and stressed out (I'm working my stay-at-home job and just started a CBD Oil distribution company, so I'm already stressed to the MAX, and she does everything she can to try and cause D.R.A.M.A in the house! NEVER a MINUTE's PEACE)

3. She's CONNIVING - she will do something JUST TO MAKE ME MAD, just so she can have the satisfaction of having that time with me, or so her CNA says...but I am doing my best to give her all the time I can per day...I CANNOT be with her 24 hours a day...I deserve to have SOME LIFE, even if it is somewhat pitiful!

NOTE*** Numbers 3&4 go together...and the worst part is that anyone who does not know her outside of our AT HOME life, they all think she's this SWEET LITTLE OLD PETITE LADY...but she's not...She's hateful, and scheming (because she has all day to sit there and think of things she can do to cause D.R.A.M.A. in the household) - even at 98, she's still got that much of her brain about her...and ungrateful, and disgusting hygienically and uncaring, and I could prolly go on and on, but you get the idea...

4. She's the most UNGRATEFUL person I have had the displeasure of ever knowing!! She treats me like a slave...like I'm here JUST TO WAIT ON HER HAND AND FOOT...She barks out orders to me like I am some sort of 'House Servant', and I don't deserve that

5. In no way, shape, fashion or form, do I matter to her, except that I am here to wait on her hand and foot. And if my no-good, non-helping brother walked in the door, I could be dying right next to them, and it would not matter...they would drop EVERYTHING to make a fuss over him and just let me die!!

6. I have ABSOLUTELY NO PRIVACY in this house - I work from home and I have asked her not to come into my room while I'm working, and she just barges in while I'm talking on the phone for work and cannot obviously talk to her...so she sits there in the doorway and just keeps talking to me like I can hear her and the person on the phone ! Happens ALL THE TIME, regardless of what I'm doing...She barges in when I'm on the toilet, and when I tell her that, she does not care - just keeps talking to me, like the conversation could not wait until I'm done taking my dump.

7. My life is slipping by and I cannot do anything about it, and the way I feel right now, she's going to end up out-living ME!

8. She is DISGUSTING when it comes to her hygiene!! I try my best to keep her clean...I have to fight with her to get her to change her Depends in the AM (I only let her wear them at night b.c of accidents, but any more than that, she won't change them and she is more susceptible to UTI's, so I started her wearing cotton panties during the day!), or if she's had an accident in the bed, she's PERFECTLY FINE laying there sleeping in it...or wearing the same Depend for 3 days in a row (she did this one time when I was sick, and I trusted her to give me an honest answer when I asked her if she had changed them, but then it dawned on me that she was still wearing the same pj's she had on several days ago, so she hadn't changed them since she put those pjs on); I cannot get her to remember to use toilet paper when she goes to the bathroom, so I'm considering installing a bidet - that'll teach her to not wipe her butt!)...she never washes her hands, and that means she puts her nasty bathroom hands on her walker handles, and then when I go to put her walker in the car, I get all of those nasty germs on me...she cannot seem to eat without getting it ALL over herself!! Drives me ABSOLUTELY NUTSO!!.

So, between this one and the other one, I think I've gotten so much off of my chest and I feel so much better. Thanks for listening. Hope I haven't crossed the line on here...I just really needed this venting session...you can ignore it if you want...like I said, I just needed to vent. Feeling so much better now!!

Ycatsms,
Happy Birthday!

Who is that a picture of, since it is not you?

OK - this might be more info than you bargained for, but I'm in need of some venting...my therapist is out of country on a mission trip :-|

I just turned 48 and have been my 98 yr old Grandmother's sole caretaker for the last 6 years this month. I have a piece of $h!t brother who does NOTHING to help, not even call her to tell her he's OK when he's in Pensacola during the #IRMA hurricane disaster - the state of FL was told to evacuate and he did not even call to tell her he was OK!! She said GLUED to the TV for the WHOLE THING (except when she would FINALLY doze off and I could get her to be without argument; but when i would wake up the next morning, she was right back in front of the set. He turned out to have not gotten ANY DAMAGE, but it did put a TON of strain on her!! He's selfish and self-centered and it breaks her heart DAILY!!

Anyway, I digress...I am 48 and have been her sole caretaker for 6 years this month. I finalized my divorce in March. 2012. I have found a way to work from home because if I'm gone more than a couple of hours at a time, she starts blowing up my phone wanting to know where I am and what I'm doing, despite the fact that I told her all of that just as I walked out the door. IF God were kind enough to lead me to a new romantic relationship (which only HE could do since I'm fat and ugly, so I guess its alright that she keeps me tied down), I would not be able to go OUT because she would be calling me during my date, Heaven forbid me try to have him spend the night (which is the only way that would work because I cannot be gone over night). And when I do travel - especially on my 'caretaker getaways', I have to include the cost of the AL facility to my own daily rate ($100 a day), but she really likes the facility and they take good care of her. So that helps, but who has that much extra $$ to put her up in a safe environment when they want to get away from doing what caused me to have to go on my 'caretaker getaway' to start with? And then when I do manage to get away, she gets angry with me if I choose to TOTALLY UNPLUG and not call her!!

I live in a SMALL, VERY CLIQUE-ISH town, and if you didn't grow up here, or marry someone who grew up here, you're NOT GOING TO MAKE IT SOCIALLY! PLUS the only thing they have abundantly around here is an over-abundance of CHURCHES - GROUP-ORGANIZED churches, and if you don't look like them, believe like them. or have more contemporary beliefs, you are ostracized! So once again, NO SOCIAL OUTLET!!

And back to me individually...now is the time that so many people my generation are also divorcing and starting their lives again. And instead of me doing that - because I deserve to after the HORRIBLE MARRIAGE I HAD - I'm here in TOTAL ISOLATION and have NOT ONE FRIEND in this town!! I'm MISERABLE!!! I just had my 48th birthday, and because she doesn't remember most stuff (not dementia, per se...but more like age-related dementia. which at her age, she's entitled to), she didn't remember; and because I have NO FRIENDS, I had no party, dinner, or even a cake. I could have bought one (and might still do it bc I deserve to have birthday cake on my birthday) but I didn't want to seem that pathetic!!

And here are all of these other people around me who are getting their divorces and moving on to start new and hopefully better lives and I'm stuck here, totally isolated and alone.

Please don't get me wrong, I'm not upset with her at all. I LOVE HER DEARLY!! I'm just T.I.R.E.D!!! And, I'm just more than a bit frustrated with my brother for not helping me out. But, she's not forgetting and being so depended on purpose, I know...and it makes me sadder than it does mad most times. but all of it DOES get overwhelming, and you can't teach a child to care and be aware and remember, so I'm trying my best to remember that.