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

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

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Tiredonlychild- thank you, it's nice to know I'm not alone. To be able to vent and read others comments. Even last night she had me up until almost 2 in the morning because she didn't "feel right"... I convinced her to take the medicine her Drs prescribed for that and what do you know, I was allowed to go to bed about 20 minutes later. I work Monday through Friday, I work in special education at a elementary school. So the weekends are my time to try and get them house cleaned, grocery shopping ect, and this weekend I've been dealing with a cold, and I think that's part of why I just feel so worn down right now.

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Reply to stressed2017

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Thanks, tiredonlychild, I just put that movie in my queue. Your are so correct about discovery. I've heard one shouldn't ask questions, if he/she doesn't want to know the answers. I mostly shout (in my head), "but I didn't ask." But the truths keep coming out, so it will be great to have a new mantra : )

Stressed2017, I feel your pain. I moved across country and started caregiving when I was 37, my mom was 73 and my dad was 81. Turns out, neither of them were at death's door, but they both were narcissistic, manipulative people (my father was just diagnosed at the ripe old age of 94.)

If you can, find a great therapist and start erecting some boundaries. Boundaries (and dark chocolate!) are your best friend.

You deserve a life, let housecleaning go (if even one week - currently I, too, am cleaning house, 'tho I tell myself I'm mulitasking being online.) Be kind to yourself - that is the most difficult lesson, I'm still trying to learn.

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Mine is a lot like what the OP has - bending over backwards to help my mom and one of my aunts (and listening to a lot of whining from and about several more aunts), and nobody really ever asks me what's going on with me or what I might need help with - it's just a bottomless pit of wanting more more more of my time, energy and money.

I have fantasies of faking my own death. Seriously - women in my family often live into their 90s. I don't know if I can do 15 more years of this. Of course, neither mom nor the aunt I'm closest to saved a penny for retirement or gave even a passing thought to LTCI, so we're facing the whole panoply of undesirable choices for care (qualifying for Medicaid, which neither of them want to do...) but at a certain point? Too bad. You had a great time doing whatever you wanted for 25 years without even thinking about any of this.

And you know...it *hurts*. Not only do you lose your own support system, you become the support system for someone else, or several someone elses, who all of a sudden don't even seem to see you or realize what a burden they've placed on you.

It's going to be time to get tough. I just need to find myself a good psychologist, I think.

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Reply to Hellebore7

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Hellebore7 - I hear you! I too have had fantasies about faking my own death, way back when it looked like the only alternative was going to be for me to live with Mom. (I was there for about a year before I moved out). My mother also didn't save a penny, and she spent down her inheritance from her own parents by retiring years before she qualified for social security. And has never expressed the slightest regret or understanding of the position she has placed me (and to a much lesser extent, my siblings) by making those choices. Rather, she feels entitled to every last bit of time and energy she can squeeze out of me. It totally bites! I'm with you 100%!

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Reply to CarlaCB

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So many real stories of struggle for our generation. I hope that everyone who is considering being a caregiver will read these posts. Write to your legislators about this concern. Ask for more simple nursing home facilities in your state. The "for-profits" are very expensive. They are fancy, but I have discovered that many who ask for advice have elders who do not want to do/can do anything but watch tv. A transportation bus is a nice perk for residents who do want to go and do. After 22 years of care -- with the last 7 being at the mercy of Life Alert call emergencies, I have discovered how exhausted I am. Please don't let this happen to you expecting some "pie in the sky technicolor movie" outcome from this.

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Reply to onlyoneholly

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Amen

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Reply to Lovestinks

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Grown children who refuse to help and criticize what you are doing. Then when the care receiver passes on, they moan & groan with a poor me attitude, then criticize the final arrangements and then organize their own memorial service. It hurts to the point I want to dig a grave next to my wife and crawl in.

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Reply to Genesis1

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Thanks CarlaCB! What'd you wind up doing - how did you get out of her house? Where's mom now?

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Reply to Hellebore7

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Hellebore - In answer to your question, I lived with my mother for most of 2012 and 2013. In late 2013 I moved about 90 minutes away (close to the university where I was taking classes) and came back on weekends to take Mom shopping and on errands. I had two sisters and a BIL living in her area who could handle her needs during the week (dr. appointments, trash removal, etc.). My sisters were unhappy, but too bad. Towards the end of 2015, I brokered a deal with a retired lady friend who wanted to live in my mother's complex but couldn't afford it, to take over my mother's spare room (my old room) in return for help with day to day stuff (cooking, laundry). My mother was very resistant at first but I kept bringing up the idea over the space of a few months and finally she agree to a trial period. This has worked out amazingly well - they seem to adore each other, and the housemate caters to my mother in ways that I would never be willing to do. My surviving sister (the eldest died in mid-2016) and I still take Mom to all her drs. appointments, and I take her shopping once a week and to the library.

Living farther away, I'm not bothered by every little thing, and I can usually clear my head of the agitation for long enough stretches to keep me sane. I do have to emphasize though, that this was a long process requiring patience, careful negotiation, and the right person to act as my stand-in for daily help.

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Reply to CarlaCB

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My mother will never believe I love her.

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Reply to meallen

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Carla - how old is your mom? What are you going to do if she requires help getting dressed and some such? Asking for ideas for my own nearly-broke mother, although I realize this probably depends a lot on what states we respectively live in.

I'm thinking about asking my own mom to look for a room mate before she loses her own home, but... she also has ADHD and is off doing whatever seems fun rather than taking care of business a lot of the time. I'm really worried she's going to run out of money and call me in a panic the day she can't pay her mortgage - and she's too stubborn to let me know details about her financial picture, much less take control of it.

meallen: You realize the answer here is to stop trying to make her believe you love her, right? post more if you want to chat.

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Reply to Hellebore7

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Hellebore - my mother just turned 86. At the point where my mother begins to need help getting dressed, going to the bathroom, showering, etc., my sister and I will do one of two things, or more likely both. Apply for Medicaid and try to get her home care services under the Florida Manage Care Long Term Care Services and Supports plan, find a nursing home for her than accepts Medicaid if the home services aren't enough, or petition our other family members for financial contribution to hire some home help for her. Even if Mom does get Medicaid, the siblings will probably have to kick in some money for the things that Medicaid doesn't cover, given the small personal needs allowance that Medicaid allows.

I have provided hands-on care for a few brief periods of illness but I would not do it on an ongoing basis. I just don't like my mother enough to be willing to do that, if the ugly truth be known.

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Reply to CarlaCB

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I'm in the same boat. It's just... complicated. My own mom is something of a narcissist and a public figure on a local scale...think school board member or similar. She feeds off attention and positive "pets" from people who know her superficially.

Don't get me wrong, she's not a horrible person - it's not like they'd all be horrified if they knew what she was really like or something - but... she has ignored me a lot of my life. She went back to school to get an advanced degree - moving me and my half brother to another town away from my dad for a few years, which sounds insane actually, I can't believe my dad went along with this - and I was pretty much a 'latchkey kid' from about age 9. Half brother has a personality disorder and has been abusive at times... which made things a lot worse. There's a lot of resentment on my part vis a vis Mom not making half sib get help or even face up to how ill he is... instead she coddled and did things *for* him for years and years. He didn't move out of her house until he was over 50 years old! He has had periods of living on his own, but always with an unhealthy attachment to Mother. I doubt he'll ever marry or have a family. I didn't set foot in her house for over a decade b/c he was living there and I *am not* dealing with him unless he gets professional help. Haven't talked to him in... fifteen years?

Again, I don't *hate* her. To some extent I do kind of understand - her father was the same way, loved to be the center of attention and put his family last to the point of having 10 kids and going off and leaving their mother for another woman when the youngest four were still at home. I know Mom coddled half-bro out of guilt for leaving his dad and b/c he's a skilled manipulator, but it's still pretty hard to accept that she pretty well threw me under the bus in terms of subjecting me to his emotional and mental abuse while I was still too young to know what was going on or to defend myself. He didn't speak to me for about a year when I was about 10 or 11... would lock me in closets and stuff... I do think she'd have stopped it if he had sexually assaulted me, but she didn't do much about what frankly was close to emotional terrorism. It finally all broke down when we moved back to my hometown and my dad started putting his foot down about half brother... they divorced soon after, right after my dad was diagnosed with a terminal illness. Which she didn't think twice about leaving me to take care of, of course. Um, yup, resentment with a capital R.

Things are a lot better - she's gone to therapy, she got real about half-brother, but frankly a lot of it was because I went to therapy myself and told her she was going to do X if she ever wanted to see me again. But of course, the damage can't be undone.

Yucch. Didn't mean to dump out my whole life story (and part of me realizes this site appears on Google, which makes me nervous... going to have to pray one of them doesn't stumble across all of this, but on the other hand maybe it would do some good to have people know how I really feel for once.)

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Reply to Hellebore7

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dealing with an attitude of entitlement and ingratitude

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Reply to CeeCii

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My Dad is the same way ... It's all about him. He was never like that before. I don't even know if he has dementia or something but he has changed and all I am to him is his slave these days and I'm so weary.

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Reply to Gressecj

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meallen. I'm so sorry. As already mentioned, this cannot be fixed, no matter how much you jump, no matter how high. She either believes you love her or not. I almost believe this could get into a very sick little game where she uses this ache to manipulate you - but I hope not. Hugs to you.

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Reply to tiredonlychild

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The high level of accountability, responsibility and expectations with absolutely NO CONTROL and no gratitude or appreciation.

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Reply to DeborahSarah

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ditto that Deborah!

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Reply to Sendhelp

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My mother is grateful. She's also oblivious to the stress of her being here 24 hours a day every day for so long causes me and my husband. If we let it. Told my husband today we have to limit our complaint sessions ( to each other , never to her) to 5 minutes a day. That's it. He agreed. So far. , day 1 of new strategy is working well

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Reply to Erinm60

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Wow, Hellebore. I could have written most of your story. My mother was neglectful. The only thing I remember about her when I was a child was she watched TV while snacking. The only way to spend time with her was to sit and watch some of the game shows with her. On weekends she would watch sports except for when we were at church. She never went to school functions or did anything with us. By the time we were teenagers we even stopped bothering to tell her about school functions. My father had what is now called Asperger's and didn't have anything to do with his children.

My mother was belittling. I figured out later that she really didn't like women. She thinks they are for breeding and cleaning. I think she's really jealous. The prettier the woman is, the worse she talks about her. I also had brother from h*ll who was four years older. He made my first 14 years a horrible nightmare. He was antisocial and became a serious alcoholic. He died a few years back. Sadly, no one grieved. My mother would never help me with him. She just ignored, so I learned to be as invisible as I could be so he wouldn't hit me or start his eternal insults. He hated me. Why, I don't know. Maybe it was because my father couldn't stand him, so he was picking out someone who was helpless to take it out on. Later he treated his own son the same way and made a total wreck out of the boy.

Why do we come back into these environments? i like to think it is because we are good people who are not afraid to do what needs to be done. Maybe we're tougher than most. I don't buy into the bit that we're looking for the forbidden love or any of that, since I don't care if my parents love me or not. They just were not going to leave their home, but couldn't live alone. I was the only one available and willing to do it.

BTW, my mother is a perfect example of a covert narcissist. If I were to get pulverized by a truck tomorrow, her only thought would be who was going to care for her now.

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Jessie Belle about 20 years ago after my daughter was born. My mom told me she didn't want children. She said a lot about the night I was conceived. More than any one ever wants to know. She said she found out she was pregnant and wanted to throw herself down the apartment steps. But couldn't. So she told me she took a mustard bath. Whatever that is. Well thank you Jesus. It didn't work. I lived and I made it. She also said the second I was born. She said is she mine. All mine? She was a good mom. But why why why why did she tell me what she told me. So 56 years later. I'm here every day providing all I can for her. I am a nice person. But wow what more can I say

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Reply to Erinm60

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Goodness, Erin, that was freaky. It must have made you feel terrible and awkward when she said it. I'm glad you survived. I know she is, too, since you're helping so much. I wonder if she had a lot of conflict in her life about wanting a child (or another child) at that time, so didn't think she wanted one. Having children is a big change for a woman.

I think there are some things best not to tell a child.

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Reply to JessieBelle

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Omg. Ya. My dad drank a lot. She and her sister helped raise her baby brother. She's 17 years older than he is. But yes agree. I could not believe she said that to me. I'm so lucky to be alive

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Reply to Erinm60

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And sometimes feel guilty If I messed her life up so much. But I didn't. And where would she be with out me. My mother in law who never really liked me ( wrong religion). Has become one of my favorite people. I get support from her.

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Reply to Erinm60

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People/strangers treat me like a martyr - no - the Mother Theresa - for the elderly. I'm not!! Yes, I love Mom dearly - but she needs to die soon - so I can get on with my life! She's the Energizer Bunny and keeps going and going...and going! It sucks being an only child - an only child with no other family...

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Reply to careisgiving

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I made my mom dinner the other night ( I do every night) and I take it to her and she looks at it and days I can't eat this.... So I had to go into the kitchen and make her a new dinner. She is interrupting conversations my husband and I are trying to have more and more here lately. ..... sometimes I feel like my only purpose in life is to be my parents caregiver. When I was 9 my dad pulled me out of school to "homeschool " me, I feel it was more likely to keep him company (he had health issues, back and heart but was also very overweight) but to keep him company and make his several cups of coffee and make his lunch and clean the house. When I was 14 my mom has to quit work, she had broke her leg (She was and is very overweight) it never really healed right. So I was like a bedside nurse to her, emptying her bedpan etc, by the time I was 15 she was a little more mobile. At 17 I got a job but most of my money went to my parents, at that point they were both on disability or social security, and my dad got really cranky if he didn't have his pop and cigarettes. At 19 I moved out, even though I was almost guilt tripped into moving them out with me. My boyfriend ( now husband) convinced me not to move them in with me. Up until this point I never was allowed to do anything really then be at home or at work. Living on my own was wonderful. At 24 my dad's health was really bad and my moms mobility was getting worse. I would drive from my house to theirs everyday and be gone for hours, missing my family, I had 2 littles and married at this point. So I did it, moved my parents in with me because thier was no other option. My dad passed when I was 25. I'm 31 and still taking care of my mom everyday. I know she is greatful. But sometimes it doesn't feel like it. There is a lot I still can't do it am "not allowed " to do. It's hard. I feel like when she says jump I HAVE to say how high kind of thing. I'm trying to get my brother to help more, he is 43 and comes over for a couple hours maybe once a month. If he could help more I think it would help me to not be so stressed

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Reply to stressed2017

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I think the biggest problem is we never expected our parents to get old because probably no one ever does. So here we are. I in my 50's. Still by the grace of God , still feeling as I did in my 20's. Can't Believe that my mom has dementia and how scarey it is to think about her future. It's also aging me , because I now realize in reality I'm way past my 20's

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Reply to Erinm60

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Erin...

Good Lord, what a thing to tell even an adult child! But because she went straight on to tell you how she felt when you actually arrived and she instantly bonded with you, maybe she was reliving the extreme contrast between her feelings about babies Before and After. Her way of explaining - bizarrely! - how much she loved you, at first sight.

My dad once tried to convince me that mother had been pining for "another little girl" and that was why they went for a fourth baby. Yeah, right. Credo. I was born nine months after all those pre-Christmas parties - did he think I couldn't count? My birth certificate practically had "oops, accident" written all over it.

We're here because we're here because we're here because...

I agree with you about the shock of realising that our parents are getting old. I have vivid memories of the sea-change moment with each of them. My dad had brought over a biggish kitchen appliance for me, and as we got it out of his car he said "be careful, it's heavy." Well it wasn't. Not even sort of. And though he could just have been worrying about my back, it dawned on me that he must have struggled loading it in to the car... Noooo!!!

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Reply to Countrymouse

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The one thing that bothers me is the lack of attention the rest of the family give, yet quick to "share an opinion." Even more so, it shows me I have no one to depend on to take care of me, should that day come and to prepare for my own care. Elderly loved ones lived in a different era than us. I put my mother in check often. I will not let her abuse me. I remind her the only thing standing in between her living with me and a nursing home is her attitude. If she wants to be grumpy past my comfort zone, I tell her I am job hunting. She calms down.

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Reply to commutergirl

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When strangers and friends say "I really admire you and what you're doing for your mother...You're such an incredible person..."

Really? You REALLY do admire me? Well - how about you spend a few hours with her so I can have relief?! Otherwise stop talking to me like I'm an angel here on Earth for the sole purpose of saving the elderly!!

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

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