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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All I can add is God help us all. We never asked for this. They didn’t either. We are slowly but surely losing our minds, our perspectives, everything normal we ever knew , or they for that matter, but we are the ones in charge. I don’t want to be. That doesn’t matter. I am. I hate what dementia has done to my mother and to me

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Reply to Erinm60

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And how to make sure that we don't become so exhausted that our "head space" becomes nothing but a blank empty room? In a way, caregiving for an aging narcissist
can be akin to becoming like the narcissist yourself if you're not careful (clue: I was not
careful) . I imagine that my blank utterly exhausted interior is what the aging narcissist,
or any narcissist for that matter, experiences. Perhaps why they are so damned demanding. Anything to stave off that emptiness.

I know that when I'm no longer exhausted I can spring back to life. I can feel it happening from time to time when my strength returns. Especially around positive
life affirming people. For those who aging has taken an extreme toll or for those who
have always been narcissistic, they no longer have that certainty that they can bounce back. Perhaps that's why they are so needy and relentlessly demanding.

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Reply to bettina

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Calderon de la Barca is a magnificent literature genius who wrote in Spanish something along the lines of “Don’t take away from me what you cannot give me”, referring to the sun light.

Same applies to our mind, our thoughts, our dreams and our hopes, they are ours..no one can get to them if we don’t let them in. That’s our “head space” (I like that!), no one nor nothing can take that away from us, because no one can give that to us either ..not even ourselves. We should preserve that space and make sure we allow ourselves the opportunity to have that private room, even if only in our mind...Sometimes that’s our only lifesaver!

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Reply to Rosses003

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My friend Sarah calls it "head space," that room in your brain to think about something other than what the people around you need. Whether it's something creative you want to do, a book you'd love to read, a recipe you want to try...it's all about mental freedom. I was just starting to get a bit of that back as my kids were in middle school. Then Dad got sick, Mom got sick...

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Reply to AnybodyOutThere

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baskethill1 I went through your situation and found that my mom would let me keep responding even if it destroyed my health but because others',like your sister,would not respond then she would not require the same from them. It might be really difficult to not respond for awhile but you have to require of her too,to some degree. Otherwise being in fatigue you will end up saying things to her that are not really who you are but are becoming because of the situation. If your sister will not help out more then ask her for some financial assistance to place your mom in respite for a couple of weeks. Most ALF's offer this. Anyhow,I know from my own stress that if I had seen and taken more options for self care that I would not have some regrets now from things I said when I felt provoked. Now I cant take those times back and it would have actually been more loving of me to not help my mom as much as I did. I lost a lot of sleep and had to be taken once by ambulence to ER for blood pressure. Just passing on what I wish I had known in hindsight. Hugs/Prayers/and take care of you!

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Reply to robinsoul

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She,
May good health rain down on all of you! I hope you and son are feeling better in no time. Get all the rest you can. Forget dishes, laundry, vacuuming, etc. It's not important. Remember to keep up on the liquids and have "easy" meals (breakfast for dinner comes to mind). I'm so sorry you have such a tough situation. May the Good Lord lighten your load. (((Big Hugs)))

Longears, I'm with you, the same face, the same habits, the same voice but what happened to WHO it was? I think that is a concept normal human beings can't wrap their minds around. How could my mother accuse me of robbery, lying, assault and battery and incest?!! Gosh, that hurt....Alzheimer's or not. OK, she's mentally sick, she's mentally sick, and on and on.

I think we have been "hard wired" all our lives as to how we respond in a certain way to negativity and to have to alter that is like trying to tear your personality apart. It just doesn't blend.

baskethill, I'm a nurse too and I should be able to "medically" figure it out....Mom has a disease (Alzheimer's) and her thinking is distorted from it. But the tears flow when she says she hates her daughter (even though she doesn't know who I am). Come on, I can rationalize it but I guess we are their child first and their caregiver second.
Sometimes I feel as mentally disturbed as she is, in trying to separate her "new" personality from the old one.

I (and millions of others) will be glad when they find a cure. Until then...sigh :(

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Reply to SueC1957

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The worst thing is that im an LPN ..I know the medical wheres and whyfors. Yet i still loose my perspective and patience. I dont have my normal distance even slightly. I mean i knew i wouldnt but . I dont seem to have much emotional control. Its all about her and for the most part thats ok . Its ok if there is a real need for me. Not at 4am to take the garbage out of her room . Or 3AM cause she wants coffee. Not at 6AM cause shes starving when there is a banana and a sandwich and 2 cups of water next to her ( incase she gets hungry) . I know she cant help it.. But after 4 nights of almost no sleep and for stupid reasons.. im sorry i yell .. Then i feel like crap. I have help 3 days a week, we are looking to see if we can afford evenign help a couple nights a week. Its just so frustrating when i cant take 10 minutes in the bathroom, or sleep . ( and for none real reasons. I mean im not thrilled waking up for real need . .but .. To help her wiht her hair at 12:30 grr)
My sister who is 4 yrs older then me used to take her for a week to 10 days . I asked this summer maybe she could take her for 2 weeks ( at her convience) . The next time she put off taking her for an extra month ..then took her for 4 days but brought her home after 3days 2 nights ... My sister called told me she fell and was in pain .. Ok i get that . But later she told me she had run up and down her steps to her car. You can do 2 flights of steps but not keep mom one more night ? She doesnt even keep waking her up , like she does me . One time she went to her house .Shed woke me 4 times the night before and 2-3 the other nights of the week. My sis bring her home and complains cause she woke her once at 6Am in the bathroom .. REALLY . ugh.
I just wish i could get some sleep ..Even sleeping when the aid is here for 4-6 hours doesnt feel like real rest. I wouldnt be perfect ...but least id be more human

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Reply to baskethill1

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Oh my goodness! Hugs, hugs hugs to you. Bless you and your son: being sick and no respite through this!!! The agitation does get worse with changes in the routine doesn't it?

It IS impossible to understand and unimaginable HOW to accept that the person is gone while the body is there. Not in a coma; not on life support. Alive but not living!!! As if some alien invaded the body, destroyed the person and left the shell occupied by a mean stranger who doesn't know you and could care less that your world is destroyed!!

If I never hear the words "he's still him" it will be too soon!!! If I had a nickel for everytime I see him looking all normal and cute, like the old days, and forget he is broken until he says or does something off the wall then I would have enough money to buy a villa and vineyard and provide the best caregiver respite retreat in the world, all for free!!!

You are in a place of such pain. I am so sorry you are going through this. It is unimaginable for those who haven't been down this road. So glad you came here to let it out. Sending prayers, hugs, peace and wishes for all available joy your way!!!

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Reply to Longears

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This is a hard one because there are so many things now-starting with the absolute loss of the man I fell in love with. There is nothing left of him and it is so hard to understand, let alone accept.we did not have a perfect marriage, but there was so much good in it. From the way he smelled, to his sense of humor-all is gone. But the worst of it is the verbal abuse, and my inability to say "this isn't him". This IS him and this has destroyed all that we had.

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Reply to anonymous633176

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The past two weeks it has been my own illness and my son's who lives with us and helps when he can. This is the worst yet and with both of us ill, and both feeling so bad it seems that my husband has been in the grip of agitation-even more demanding that usual, and no one to help out. Today has been the worst.

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Reply to anonymous633176

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Thanks Carla - I know what you mean about it being 'all about them'. My mom has always been that way to an extent but at least before all this she would date, go places, generally had other interests than just me. I would hear from her often when she was lonely, but forget it if she had a guy staying with her, she was wrapped up in her own little world. My world could be crumbling and she wouldn't have had a clue nor cared.

I keep telling my husband what we really need to do is find her a man! Haha I'm kidding, but seriously I wouldn't hear from her unless it wasn't working out. On the other hand, the man would have to have mental issues to want to deal with this!

I posted on the 'whine moment' thread that I'm still coughing and hacking, and mom says, "Sounds like that Mucinex has really helped you." *Sigh*

I hope your little kitty is doing better and I'm glad you were able to cancel the stay with mom so you could tend to what YOU needed to do.

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Reply to FrazzledMama

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Over the edge- what you say is true all too often. Family members breathe a sigh of relief thinking they’ve dodged the bullet and they want to feel that they’re permanently in the clear. Nobody wants to hear that you’re tired, that your situation has changed, that you’ve sacrificed enough, that you need to move on with your life. Or even that you need help and support to keep doing it all. It truly bites , I know. :-(

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Reply to CarlaCB

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I think what hurts the most is people taking me for granted and the assumption that I'd be both willing and able to continue sacrificing myself. The assumption that someone will provide care becomes an expectation - which rapidly becomes "that's always how it's been - let's just keep it like this." To be fair, the non-helpers don't know how hard it is - and they don't want to find out. I put up with a LOT of criticism and any compliments were always phony and were only given if it was looking like I could be about to give up. They'd try to butter me up with things like "you were born for the caregiver role" and "there's so much beauty in what you've done for Mom."

I never expected to be thanked or admired, but to insult my intelligence with fake compliments, criticisms disguised as benign questions, and the clear (though unstated) demand that I'd provide care indefinitely & in a cheerful manner. If I'd have dropped dead, the entire family would have been in an immediate crisis. That's how unbalanced it all was.

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Reply to OverTheEdge17

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On the great roadtrip with Rosie, another night in the E.R. where after sitting 2 1/2 hours in straight chairs, all lab work and urine test come back clean. 2 falls and 48 hours of berserk behavior and nothing is wrong. I am exhausted and I hate dementia!!!

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Reply to BootShopGirl

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Right now i think the biggest issue is my lack of sleep. Mom doesnt mean to but she makes alot of noise and also wakes me up at all hours ( sometimes several times a night) for absurd reasons ( example .. She woke me at 4AM to take garbage in her room out) . The problem isnt just the getting woke up though . Its the lack of sleep and everything that springs from it. The lack of focas. The lack of emotional control. The health issues it can cause ..etc etc. Right now all evil springs from a lack of sleep

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Reply to baskethill1

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To all taking care of someone, unless you have help from another family member, tell them to feel free to help, or back off. If your doing all the work then do it your way. Explain it to them your more then willing to accept help. But if they find an excuse oh I can’t, politely say, I’m doing things my way, because it makes it easier on me. End it there. Don’t be bullie by them. Your doing the best you can. And brovo to all you caregivers. I went though that when my DH had 2 back to back hip replacements. No help from his family, so I did things my way, and working full time, cooking , cleaning, med’s , ice, bathing, plus cutting the grass, pressure cleaning the house, all repairs, doctors visits, I was warned out. But no one helped and anyone that mouthed out got an earful from me! It did it my way! Yuki

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Reply to Yuki500

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Mom has dementia. Also has trouble with diarrhea. OK--putting up with the diarrhea is easier than putting up with the BS from relatives who don't have a clue and just criticize how the caregiving is going, And never have offered to help.
I tried to be nice describing this

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Reply to whatsagipper

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FrazzledMama - I can sure empathize with the sickness issue too. I was visiting my mother over a holiday a year or two before moving down to Florida, and as usual I picked up something on the plane and went down for the count. My mother dragged me out of bed at the worst of it because she wanted me to go to Home Depot and get sticky strips to put on the bottom of her bathtub. She wouldn't have dreamed of letting a little sickness get in the way of the list of things she wanted done while I was there!

I hope you're feeling better real soon, and for your own sake, not someone else's!

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Reply to CarlaCB

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Thanks Frazzled - the overnight stay did end up getting cancelled, to my great relief, but it was my mother who cancelled it, not me. She went into a tailspin when I said I'd be bringing the orphan kitten with me, as it needs to be hand-fed every few hours and isn't strong enough to be left alone overnight. Mom had a fit, lambasting me as if fostering an orphan kitty was the stupidest thing any person had ever chosen to do and insisting that she just couldn't allow it in her house (even though the kitten would be safely enclosed in the back bathroom where she'd never see or hear it).

And there's the other thing that really chafes me about caregiving. My mother used to be my best friend but now it's all about her. There is no longer any support or even tolerance for any choices I make for myself, the only concern is the effect on her. Neighbors I barely know tapped on my door last night to see how the new kitty was doing and find out what the vet said, but my own mother is riding my a$$ over making a choice that inconveniences her. Ticks me off no end!!!

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Reply to CarlaCB

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CarlaCB, I know what you mean. Or when you're sick and just want to sleep, but can't because no matter what you have other people to take care of.

That's been me the past few days. I think I have bronchitis. My sinuses have been playing havoc on me for almost two weeks now.

Still have to get up, take mom's blood sugar, give her meds, etc. Just wish I could hang a "do not disturb" sign around my neck! Lol

IS it possible to cancel the overnight stay with mom? Is there anyone else, a sibling, relative, etc. you could switch days with or something that could be with her so you could take care of your business?

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Reply to FrazzledMama

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Here’s the thing that bothers me: when you need to change plans and there’s no way to do it. I have my own emergency (my dog mauled an orphan kitten last night and I’m now in the vet’s office with the cat), and everybody’s calling me like “Well when are you going to get here?” Because I promised to stay at Mom’s overnight and take her to the doctor and for blood work in the morning. How I wish I could just cancel that. Or at least do what I need to do without anybody hounding me.

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Reply to CarlaCB

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What I don't like about caregiving is that husband is still okay to some extent, he won't listen to me and has to do it his way and then gets into trouble doing it his way. Other things that bother me is I get not help at all from his kids. They are there only for the fun, like rockhounding, fishing, parades. They treat me like I am a servant. I also get not help from fellow church members. I asked one church member to help me and he hedged and fussed until I could tell he didn't want to. Yet he helped another family in the church.
When I was taking care of my mother who has since passed away, everything I did was wrong according to my sister. She was always right. Yet I was supposed to be helping.

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Reply to tevincolorado

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LOL! The ice cream craving is so real. Before he started daycare my hubby had to go everywhere with me. His reward for tolerating a day of errands: a DQ blizzard! Now his evening treat is vanilla bean ice cream with semi-sweet chocolate sauce. He loves it!!

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Reply to Longears

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Judi1957–It might be good to take some time off from visiting. Your LF will be taken care of. I’ve found that if you DON’T take time off your body or psyche will force you to take a rest.

Do all dementia patients get the ‘ice cream’ lust? My mom and grandma both developed dementia and all they want (wanted) is ice cream!

I’m lactose intolerant! Ha.

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Reply to HolidayEnd

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I hate incontinence. I was a registered nurse in charge of a floor of the hospital, night shift. Needless to say, I’ve had many encounters with messes.

I liked getting friendly with another nurse, aid, LPN (the best) and we’d prowl the floor every few hours checking on patients. Together we’d flip them and feel under them, then clean them up if they needed.

Now my mother, who’s dementia is advancing , refuses Depends. I don’t get it? Is it a symbol of getting old? Can my mom even understand abstract symbolic thought?

I think the new pull up ‘lady panties’ are fabulous and comfortable. I just love them. My mom is tiny too so it’s not that she can’t maneuver them. Who knows? My mom straddled and peed in the middle of Cracker Barrel lady’s room and she had regular panties on!!! Ai yi yi. I wasn’t the one who dressed her.

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Reply to HolidayEnd

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Dear keepingup, your feeling are right on. Your mom isn’t your mom anymore. She’s in a world no one is invited into until you reach that age. I salute you for all those endless hours. But know one thing, it doesn’t go un rewarded. One day you might need this same help, I don’t know if your a religious person but God is looking down on you, very pleased. We are all put on this earth for a purpose , it’s strange was that purpose is. But when I was thrown into it , I won’t lie I hated it. But there’s a reason for it. I use to cry myself to sleep, and no it wasn’t easy. Working full time, running around like a crazy person I was. But know we’ve all been in your shoes. Does time make it better? I don’t know? I’m praying for you, your strong , you just don’t know it. It will get better, when I don’t know? But your not alone.

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Reply to Yuki500

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Thank you, Snoopylove, for letting me vent without judgment. She is my "job" but she is also my mother and I feel guilty for thinking that way. My siblings all live in different states and want nothing to do with her. He Thanks to this website, I know we all have our burdens. I am grateful.

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Reply to keepingup

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Hi Keepingup - please don't let guilt occupy your thoughts too much. I do think that within reason, if you can help an elderly parent, then good. But I don't think giving up your sanity or well being is required to be a good and caring adult child, or in God's eyes either. God Bless, you are not alone, I promise....

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I hear you. I have been taking care of this lady friend for 14 years. She recently had to go into a nursing home due to a stage 4 wound. But for years I've noticed a steady decline with her memory. It seems all she cares about is whether i can do her hair, bring her ice cream. When i visit her and tell her I'm not well enough to do her hair, she starts wailing and crying so loudly i fear the nurses think i’m abusive. I ask her “you mean even though i dont feel well, you insist i do your hair?” And of course she says “yes!” When i talk to her, she looks totally bored. She listens in on someone else’s concersation instead. So i feel no sense of gratitude and its got to the point i feel like not going back for awhile to see her. I am her POA and handle all her finances now. I feel trapped. That i am a bad person if i bail out on her even though she shows little respect or gratitude. She has not been diagnosed with dementia but she has many symptoms, including incontinence, cries when she doesnt get her ice cream, etc.
By the way your post made me laugh due to your outright honesty about your feelings. There are many times i feel like calling this lady battleaxe but don't bcuz i know she probably can’t help it.

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Reply to Judi1957

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I hear you. I have been taking care of this lady friend for 14 years. She recently had to go into a nursing home due to a stage 4 wound. But for years I've noticed a steady decline with her memory. It seems all she cares about is whether i can do her hair, bring her ice cream. When i visit her and tell her I'm not well enough to do her hair, she starts wailing and crying so loudly i fear the nurses think i’m abusive. I ask her “you mean even though i dont feel well, you insist i do your hair?” And of course she says “yes!” When i talk to her, she looks totally bored. She listens in on someone else’s conversation instead. So i feel no sense of gratitude and its got to the point i feel like not going back for awhile to see her. I am her POA and handle all her finances now. I feel trapped. That i am a bad person if i bail out on her even though she shows little respect or gratitude. She has not been diagnosed with dementia but she has many symptoms, including incontinence, cries when she doesnt get her ice cream, etc.
By the way your post made me laugh due to your outright honesty about your feelings. There are many times i feel like calling this lady battleaxe but don't bcuz i know she probably can’t help it. And also her situation pretty sad.

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Reply to Judi1957

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I'm so sorry, Keepingup. What you are describing sounds like a horror movie. Isn't there a way to remove yourself from this situation? Forgive me if you've posted elsewhere with an explanation about this. You deserve not to live in fear.

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Reply to SnoopyLove

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

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