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

Erinm60 - Yes, my mother has always lived with medical conditions. When she was born the doctors said she wouldn't survive. Then they said she wouldn't make it to 1. Then to 5. Then to 21. Then they said she wouldn't live long. She had a live-in boyfriend for 14 years who helped her until 1996 when he died of a heart attack. That's when I took over. She has a long list of conditions that she has survived and managed. I don't know how long I will be doing this. Her brother is 102.

My mother has never been able to live by herself. Mentally challenged. Her dad died when I was 22. I left at age 18 for college and then marriage. So she has lived with me my whole life minus 4 years. I smh when I read of people's complaints for such a short while. I am now 58 years young. Like a second skin. 3 marriages later and we are still here. I guess I acknowledged the fact my situation may be God's purpose for my life to be her caregiver. I welcome knowing in my heart I'm right. 3 marriages, 2 adult kids, 6 grandchildren, travels, great career when I was working. I didn't let our situation hinder my life. As they say, where there is a will, there is a way. My sadness now is how nonchalant my kids are to bring their children to see great grandma. Their everyday lives seem to take precedence over the fact I would like a break sometimes. Siblings, one whole, and 6 step. The whole... 25 minutes away and just began coming around when I mentioned mom's heart has stopped 10 times in 4 months. I even got Mom her own telephone number (magic jack) in her room so only she would answer. So my biggest complaint is being her "everything".

Short of using duct tape, I can't figure out how to keep the life alert button necklace around her neck on lol !

BootShop, maybe she would like the bracelet style better?

Yes it came with a bracelet strap. I'll try that. Thanks CWillie!

I hurt for some of you; we had my mom in our home for 3 years, and it was baaad at the end, just before she finally moved out. Can not imagine 21 yrs, and we weren't even doing personal care! I do visit someone every week in the AL here, and talk with some of the others, and tho they have some issues there (mostly hard to get good help - would help if the facility would pay more....), everyone seems clean and reasonably content - no nursing home smells or groans, either.... It's a very nice place, and while expensive, not the most I've heard of, and not as bad as a NH. Some of you may want to consider this; there is financial help for some who cannot afford the whole cost, and if your LO doesn't want to go, ways to get them to do it. My mom's visiting RN, Dr., and SW will do it if it becomes necessary to move her from her apt, God forbid. Sounds as if some of you are way past burn out, and ruining your lives... I hate that for you! My husband has helped me a great deal to learn to set limits and boundaries and to let go of false guilt for things that happen, or that I cannot or will not do.... if you don't have a supportive person like him, you probably know this site will help you; I often get tips, confirmation, and affirmation on it - thank you all!

What is the one thing that bothers me most about caregiving? Not having her here anymore. Now I wish I could be her 24/7 caregiver again. I wish I could bathe her and toilet her and feed her. Just to touch her and see that smile again

what bothers me the most about caregiving for my mom and dad both 92, both with dementia, is the love that they both showed me throughout the years. its gone. they barely know who I am most of the times. I miss the hugging, kisses, and the smiles that made me feel so special to have them as my parents. I give them all of my time with love in everything that I do for them but I don't get it back any more. that's very painful to me. that's the worst part of all of it. missing the love we all had for each other.....

Dear Genesis1,

I am in the same boat. My dad passed last year and I too just miss having my dad here. I took him for granted. I saw no end in sight but I failed to see how painful the alternative was as well. If I did, maybe I could have found another way to save him. I never knew how much of a void there would be without my dad.

I can't seem to pick just one there are so many. The "all about me attitude". Not seeing an end in sight. Not getting help from my 2 older sisters. Not having a life of my own. That's just to name a few off the top of my head.

This morning, finding out my mother writes on newspaper when I leave the house, where I am going , and when i return. I'm 56. I showed the paper to her. Asked her why. She said " I don't know". She was not like this when I was in my teens

Erin...maybe your Mother is scared,being alone or just wants to be able to tell someone where you are in case something bad happens.My Mother sure didn't want me out of her sight and she was always so relieved when I returned home from the grocery store after getting a few items.Maybe it's a security issue.......

Hi luckylu. I don't know. it makes sense though, what you said. But it's even stranger, if I'm taking garbage out , and I'm not back in the kitchen, with in a minute or two, she ' ll look for me. It is extremely annoying. Thanks for your input

Erin,
She is your shadow. That is what she will be as long as she is with you. We "know" that is how it goes for us.
Kootiebear, I hear ya, loud and clear. They have nobody else or nothing else to occupy their minds other than what their needs are, they no longer have the capacity to think of how this affects us. Even when I try to tell her, she may acknowledge for the moment but it goes right back to her next fixation of what she needs today. My two siblings never visit or have offered to help out and she has alienated any past or new people that reach out to her to be a part of her current world, hence, all my responsibility for all her needs. She refuses any attempt to go to adult daycare every now and then so she can converse with somebody else besides me. I have no life anymore either except keeping her safe and tending to all her needs and fixations so she is content. She would rather watch the neighborhood out her window and monitor their comings and goings.

I feel like "nothing" also just like most of you on here! Then my siblings have the nerve to complain or to get ANNOYED at me asking for small help with OUR mother! They live their lives like she doesn't exist! But she is still here you jerks! Yes Mom is KILLING ME SLOWLY! BUT I LOVE HER I JUST NEED THEM TO STEP UP AND BE HER KIDS I AM! I can't do this anymore! She is so narcissistic bipolar mean to me! I'm the retarded who deals with all her bull and I'm NOTHING! I can't even get a break! One week or a month maybe she will appreciate me. My siblings too! Did I mention that one lives down the street! The other lives 4 hrs away! I'm tired, angry, & guilty for feeling that way! I have my own family medical issues going on too! How dare they come around when they want and be the perfect child in mom's eyes! Wtheck! I'm DONE! SEE ME! OR ITS NURSING HOME! LETS SEE IF YOUR ANGELIC CHILDREN THAT CANT EVEN CALL NOR VISIT FOR A DAY MUCH LESS A WEEK, LETS SEE IF THEY TAKE HER IN! THEY WONT!

I feel like "nothing" also just like most of you on here! Then my siblings have the nerve to complain or to get ANNOYED at me asking for small help with OUR mother! They live their lives like she doesn't exist! But she is still here you jerks! Yes Mom is KILLING ME SLOWLY! BUT I LOVE HER I JUST NEED THEM TO STEP UP AND BE HER KIDS I AM! I can't do this anymore! She is so narcissistic bipolar mean to me! I'm the retarded who deals with all her bull and I'm NOTHING! I can't even get a break! One week or a month maybe she will appreciate me. My siblings too! Did I mention that one lives down the street! The other lives 4 hrs away! I'm tired, angry, & guilty for feeling that way! I have my own family medical issues going on too! How dare they come around when they want and be the perfect child in mom's eyes! Wtheck! I'm DONE! SEE ME! OR ITS NURSING HOME! LETS SEE IF YOUR ANGELIC CHILDREN THAT CANT EVEN CALL NOR VISIT FOR A DAY MUCH LESS A WEEK, LETS SEE IF THEY TAKE HER IN! THEY WONT!

Cryssy2002,
I feel for you and understand. Mom isn't mean though thank god or I could not take it. That would be the cherry on the sundae that would shove me off the cliff. I can relate to most of the other stuff. My brothers live fairly close (less than an hour away) but I had to boot one off the property for mooching money off Mom everytime he showed up! He is a mental case loser on permanent disability and is married, has a kid and HER parents from the Philipines live with them! So, him crying wolf is typical. I need this, I need that, pay for all my lunches and my family too! She can't afford it! We are not Rockerfeller's or she could afford a caregiver and I would not have had to be the one who sacrificed my entire life to assure her safety. I actually became a caregiver, (gave up my career) because I knew her dementia would get worse, and it has, so she would need full time care. We were billed out at 30 an hour!!! She can't afford that! She is still physically OK, just not mentally. My one brother I booted makes false accusations about me and the other one is pretty much MIA unless he feels an occasional pang of guilt around a holiday. Then he drops off a little gift or card and he has done his duty for a while. Then of course, they are so sweet to actually have done something!!!!
You are not alone dear. *Hugs*

Having one of those days where I'm thinking about faking my own death again...

Yesterday we learned my mom (78) is experiencing the return of breast cancer she beat back in 1992. Just now my aunt F, who can only speak of herself and her own problems, called ostensibly to see how *I'm* doing (breast cancer is hereditary and virtually all of Mom's care will fall on me, since she has saved no money for old age and my half brother has a personality disorder.) We talked about me/Mom for maybe 2 minutes when it all went into the low blood pressure Aunt is having due to medication she takes, all her own problems, how her friends aren't helping her enough bla bla bla.

Honestly I really should have hung up the phone. Issue is, my mom has SIX sisters all of whom are in their 80s... once they're all gone I'll be the sole caregiver for my dad's brother, who has no kids. At least he's bought long term care insurance.

Hellebore7 (love those plants)
Sorry to hear about your Mom's cancer. 😥 It runs in my family too. I imagine you feel more overwhelmed now knowing what she will go through, and you will go through it as well. Sometimes when folks get old, Aunt F, all they can focus on is their plethora of ailments, it's all they have left to talk about. I sadly get it as I am getting older and more physical issues are starting to rear their ugly head.
Yeah, I am Mom's sole caregiver (she did not save or have LTC insurance either) and I live with chronic pain from an old injury, I badly damaged my lower back that has turned into arthritis (disc pretty much gone) and bursitis in my hips. I manage to care for Mom's lymphatic leg (from a prior cervical cancer surgery) and that is a chronic condition too. She is 81 and has dementia as well. Faking my own death? Sounds tempting somedays! One of Mom's sisters had breast cancer twice, oddly enough, she made it and is still working as a nurse in her 70's! Mom's other sister has dementia now too so I am not liking my odds between both of those awful things. Oh, I also found melanoma on Mom's arm but found it so quickly, they removed it without it having gotten a foothold. Let's face it, for a lot of us, getting old sucks on so many levels, whether you are the caregiver or the person having to be cared for, it's no picnic!!! I will pray for you and your Mom. *Hugs* It will be rough, especially at her age.

Thank you rainey!! sure appreciate your kind words. Was just looking up a listing for caregiver support groups in my area and realized that in many ways I've been lucky to *not* have already been affected by many conditions that affect people and prevent a good quality of life. So maybe it's "my turn." Certainly thankful I don't have my own painful health conditions to deal with and that my spouse is healthy - both of us have picked up better habits and have lost some weight this year, so hopefully we're a ways off from needing care ourselves.

That said, I'm just sick I'm going to need to pitch in so heavily again right after we just got Aunt F through her own full year of cancer and now heart failure... she had no children so most of the work to care for her has fallen on myself and one of my cousins. It's just one of these things - when people get old, they get sick, it's not a universal conspiracy to stop me from picking my career back up more intently or anything - or so I'm telling myself so I won't be so upset. Of course I'm also worried about my mom and what the diagnosis might mean, but I'm also having a lot of problems with that 'no end in sight' feeling (Mom originally had nine brothers and sisters; a total of seven children are still living, in their 80s. Only two of them had more than one child and two had no children, so we cousins are stretched pretty thin with the caregiving (and two of my cousins have special needs children... two more have spouses with cancer.)

I really *really* need some income, just not sure what I'm going to do... doesn't help that only one of my aunts has any significant savings for retirement or elder care. I don't want to have to look into qualifying for Medicaid but that may be what it takes.

Hugs to all in our community this afternoon.

Hellebore7,
I understand many of your thoughts. I am glad you and husband are in good shape physically, I have forgotten what that means since I ruined my back at 17!
Had to give up my career, always with my nose just above the waterline financially, no health insurance, I pay out of pocket, only way I can afford it, and pray nothing serious comes up!
The no end in sight? I totally get that and I am forever wondering how long will I be a prisoner caring for Mom and then feel terrible for having thoughts.
Medicaid from what I understand in very invasive as far as going through all assets and prove you have nothing to qualify. I hope not to have to go through that nightmare either.

I watch my mom day to day get more mean n tell men she wont treat me badly anymore cus I'm browbeat I never realized how bad cus mom is always been strong and independent but now she acts like she I the first 67 yr old toget sick. W a blood clot and that was in March of 2014 she Is denial one day n next dayshe knows exactly what she is doin which atv the timeee she does.... so I have had anxiety attacks since I was young n if I gave her theee world twice it wouldn't Ben good enuf ....Idk what to do antmore

I agree how an elderly loved one can not feel safe home alone. I have a trend camera I bought from Walmart where I can watch her via my cell phone in real time. Its as if I'm sitting in the same room. I also have a landline via a magic jack that is on her table next to her. She is to call me every 15 minutes and check in. I can watch her, the cam has two-way audio but being by her tv, it's best to communicate via telephone. Best investments I have made. She can call me with ease (ol' school only know how to use landlines, not cells) Also I welcome family or friends to call her direct and bypass me since they hate to explain their long gaps as well as I am really tired of the "so sorry I haven't been by" opening line. She seems calmer knowing my eyes are still on her.

The complete isolation, loneliness, seeing the One Person You Love with all Your Heart suffering. Knowing that the End is not too far off. Family Members not offering to Help hence Caring for Your Love One falls completely upon Your shoulders, but You do it any way out of loyalty and complete Love, and You never complain because in my own Life My Mother Who I Cared for did all of that and a million times more for me, and I really do miss Her, as Mom
was not just my Mother but my best Friend too. Rest in peace.

Never having the house alone to myself, or with my husband. Not being able to go on a family vacation anymore. Being in my mid-40's, should be the best time of our marriage and life, and we are tied down to being home a lot. It's frustrating when there are no other siblings, or family members around. Just husband & me, that's it. Thankful that she is doing ok, but really miss my freedom.

Michmom,
Amen to that. I second the thoughts completely. I still struggle with the feeling bad about having those feelings.

The one thing? That's easy.....the poop. I am so sick of seeing it, smelling it, and having to deal with it. That's all.

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.

Ycatsms,
Happy Birthday!

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

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!!