Marialake Asked April 2014
What is the one thing that bothers you the most about caregiving?
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You KNOW my Mom is a duplicate of yours in that she shoves everyone who tries to make contact, reach out, be a friend, out of her life and makes me the one to "break it off with them" because she is too chicken to tell them herself. It really miffs me too. I don't want to be her whole world! My only saving grace is she lives in her cottage 10 steps away from me so I can run away and get some "me time" to keep my sanity.
Erin, oh God, you make me laugh so much, the Xanax comment, I can totally relate to that one too! I am going to see my doc this week and am seriously going to ask her for some, I am in dire need of keeping myself calm when dealing with her, I am tired of my blood pressure going through the ceiling, losing my cool and feeling awful about it afterwards. I do have anxiety so I don't think it should be an issue. I so need it!
Hilarious!!!! The bedroom eyes! Gotta love the vanity that knows no limits! I swear I will be nothing like that. I quit the whole "make up" stuff years ago, love the freedom, don't really care what others think but our parents generation, totally different to the point of ridiculousness. Thanks for the laugh even though I know it is exhausting dealing with it in reality.
Here we are all venting about how our Mom's drive us nuts in their behaviors and sometimes we cannot see what it will be like when they finally do pass on because sometimes, when you are dealing with this for so many years, it seems it will go on forever.
I am sorry for the loss of your Mom, sounds like she was very lucky to have such a loving child such as yourself. Take care of yourself and think of the good times you were lucky to share with her. *HUGS*
Caregiving is so difficult on every level, physical, emotional, mental. Today I was feeling overwhelmed and sorry for myself - what little of a life I have must be arranged around Mom's needs, but some day I will really miss her. There are no good ends to caregiving. Exhausted and overwhelmed during, and sadness when the journey ends.
Truly, I did not need one more day of that depressing stalemate. Also did not need one more day of people on the sidelines telling me (overtly or obliquely) what I should be doing for my "dear sweet" mother -- who acted like the kid in The Exorcist whenever I suggested something that countered her self-styled reality.
It's hard to reason with someone who's one step away from covering the windows with foil. And was openly hostile when anyone expressed concern that she fell more days a week than she didn't.
But during those demoralizing, stressful years, I very much missed the Mom of 10+ years prior. Normal. Or her version of normal. We all have our quirks, but you know....
The inevitable happened, and Mom died in a home accident. "Pride goeth before a fall." Literally. (To all the stubborn old goats who want to die in their own home, be careful what you wish for. It isn't always nice and neat, floating off to "the big sleep" after you hop into bed for the evening. Sometimes it's hideous and painful. If your idea of a fitting legacy is your loved ones wondering how long you moaned on the floor before you actually died, by all means, stay in that moldy old house with too many steps and no grab bars.)
Nope, I do not miss "latter-day" Mom. Couldn't reason her way out of a paper bag, but fooled a lot of people with her flair for names, faces, important dates and math -- and her mastery of just enough minuiate to fake a brief conversation. And I was always the chump who knew the real deal. Another day, another booby prize.
I was not cut out for all that.
I did -- and do -- miss what could have been. Cuz I nevvvvver pictured Mom as someone who would age like that. That is not how others in her family aged. (If you can call it that. Many died in their 60s.)
I had no blueprint for this hopeless journey. When Mom had all her buttons and could get around like the rest of us, she was fixated on never disturbing any of her husband's assets. (2nd husband.) HAD to show the world that his kids weren't going to inherit one less property or one less penny just because she was on the scene.
Fast-forward to widowed, ailing, and refusing to spend a dime on anything other than run-of-the-mill monthly overhead, groceries and hefty church donations. And occasional weird catalog orders....and periodic bursts of Home Shopping Network overkill.
Enter me, with my "choice" of enabling Mom and getting a relatively pleasant response, or saying/doing what any thinking person would say/do and getting frozen out. H*ll, I had to play the game so I could retain access and see what was really going on.
For some of us, final memories suck.
Wow. Your candor is amazing and admirable. I could also see the view from what you lived as though I was watching a movie. Many things I can relate to, others, not so much but can certainly understand why you feel and have come to terms with your memories of living through what you did. All forms of dementia are so difficult to come to grips with when it is your parent. The huge changes to the personality to where they become nearly (if not completely) unrecognizable from the parent we grew up with and "hopefully" want to remember. Mom had her quirks too before the dementia, yeah, we all do if we are honest with ourselves, but the random folks making comments, (like they know what she is like 24/7) fooling them with certain lucid moments or memories and then they will say something like, "See, she is more "with it" than you think!" Chump moment. I just smile and nod. No way you can convince them, they know better! Just like the uninvolved siblings that are off living their lives, "Mom's OK, just a little forgetful, your job taking care of her is a piece of cake, what are you complaining for?" Grrrrrrr.
Not sure how I will feel when Mom does pass on but I do certainly get the "pride thing." I also wonder if I will wake up to find her dead on the floor for something stupid, so many times already, she will call me for silly things and the big important things like her health, falling, not a word. I always have to "discover her" after the damage is done. No telling if she will make it to the full course of dementia when she will no longer recognize me and how many more changes in her personality I have yet to experience. Who knows how I will feel then but honestly, more for her sake but mine also, I pray she does not become a helpless invalid with no mind at all sitting like a zombie. I wouldn't wish that on anyone.
I know it! I keep trying to visualize life as a free woman and what it will be like to be free of my dysfunctional family for good. That keeps me going but it is so hard. A daily struggle of one kind or another. Just to have a day where nobody wants me to do something for them. Not to be expected to " do my duty" or make another d*mn decision, or deal with morons. Someday............
There's no book, seminar or video that prepares us for what we sign up for. Even the "best of the best" doctor can only presume, based on their knowledge, what we may experience with our loved one.
We are way too hard on ourselves, most of the time. We dwell on everything when we are caring, & when, for whatever reason, our role is over. We are saddened by that, not happy, even with all the trials & tribulations we were given.
It's normal to be tired, occasionally make a mistake, have those could have/should have thoughts. We do the best we can.
We are compassionate, demonstrate empathy. We love & care. Try to know that, give you a hug. Blessings 🌸
I'm not as angsty and angry as I sometimes come across. This site is cathartic. And inspires(?!) me to pull the occasional dump-and-run. Because on AC Forum, at least a few people understand!
No one in my real life has had the same challenges w/an aging parent as I did. Challenges for sure. But different maladies. Different "hot buttons." Different sticking points.
On top of everything else I rant about, it was also frustrating to see Mom become such a......hypocrite. Her whole (normal) life, she always encouraged people to get their medical issues throughly checked out. Emphasized the importance of following doctor's orders and taking Rx exactly as assigned.
Mom also insisted there was no glory in the elderly clinging to homes they can no longer maintain or navigate properly. She was a huge proponent of IL, AL and SNF, when the time was right. Was the first one to tell a peer not to feel guilty about moving their vulnerable parent to a facility with 24-7 trained help.
In addition to Mom's hefty (inherited) assets that she refused to dip into, she had long-term care insurance! A very good, reasonably-priced policy that she paid into since she was in her early 50s.
Aye yi yi. I really cannot pinpoint when Mom's "too busy/too unique" meme (her lifelong hedge to avoid anything that didn't ring her bell) and the largely-unfounded paranoia about in-laws and stepkids crossed the Rubicon......and the lack of self-care became driven by Mom's deteriorating brain function.
Well! When I'm not banging away on this forum or working myself to a tired nub or seething about my in-laws, I try to enjoy life. I really do! After caregiving, I see many things through a new, less rosy filter. But still. There's more to me than "the agony journal." Thought y'all should know that!
Have a happy holiday weekend, everyone. 🙂
Rainey, it's easy for people like us, caring, to get taken advantage of it seems. There's always stuff to do; laundry, vacuuming, etc. Amazing how easily others don't see it. It's also sad that they don't realize & notice what we do, we keep up with everything.
Genesis, 30 day respites are crazy, great if you are ready to place someone. There is the $$ concern & after 30 days it's tough getting things at home back to where they were. A facility is like a 5 star hotel. Keep looking for a minimum of 7, don't give up. The idea is to lessen our stress & worry though.
This isn't easy for us. Take care of yourself, physically & mentally. We matter! Blessings 🌸
My brother lives a mile away,but his family takes precedence. My sisters are out of state. I just never imagined it would go on this long. My dad can be selfish,and doesn't understand why I'm so angry all the time.
The daddy do list is always my days off activities.
I hide in my room a lot.
I am so tired
Thanks for reminding me that just when you think you are going through h*ll, someone else out there has it way worse than yourself! I cannot imagine dealing with that kind of delusional world. I must admit, that would probobly be my breaking point and I would be looking at facilities. You are to be highly commended for your strength in dealing with this!
After that, transferring my mom and worrying about dropping her, which I don't have to do now that I have 24-hour care for her. I used to. Even with another person in the house to help, it was still difficult and scary. My mom is small, but so am I.
Ready to get off this roller coaster crazy ride!
I'm an old memory to my brother, he didn't like me when he was well, so, I still hear no, more than yes, & have to proceed with caution at times. Aides have no problems.
What a "Long, Strange Trip It's Been."
Blessings 🌸