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

Hospital case managers

FIL is in …. in house hospital rehab, wants to sign himself out AMA. His ALF says he has to walk with his walker 150 feet first to return. ( I think they are trying to get rid of him because he is so uncooperative with showers and incontinence care ).

I fielded the call last Friday and told the case manager that FIL can’t sign out AMA, he has dementia and his son (DH) has DMPOA. Not to mention if he leaves rehab he will be homeless if ALF won’t take him . Case manager said well if he refuses treatment and wants to leave…..
it will be on us to find him a place to go ,

Went up to the hospital and spoke with FIL . He said he will stay but he wants to be taken out to dinner after rehab is all done . We have not taken him out in months , his walking is so bad and I’m not hurting my back pulling him out of the car . We bring him food .

I doubt he will finish the 7-10 days . He will get them to discharge him early and I don’t blame them . Hopefully ALF will take him , because he can’t get up the stairs in my house and he can’t manage in my bathrooms . So far he’s having difficulty walking far , so in addition to walking they are working on self propelling in wheelchair . FIL is going to flip when he gets back to ALF , we put a wheelchair in his room today .

Same here…. I think she is cunning, knowing that it’s crazy of me to think it. I sometimes wonder what’s going on in her head. Some days she’s hateful and some days she’s compliant. I’ve been doing this, alone, for 6 mos. She has declined significantly, but I think she’ll put me in the grave. A hospice aide comes twice weekly to bath her and change the linen. Thank goodness; but the rest is on me. I have resisted everyone’s resolve to put her in a facility, but can’t bring myself to give in as long as I’m physically able to care for her (which will be when I end up disabled myself). Dumb, I know.

What bothers me the most about caregiving?
Today, davidmiller2.

Wow! I can relate! It’s so difficult to have my own mother treat me this way. She hurts my feelings. I have to remind myself she isn’t my mother anymore. Just a sick, immature person.
Best wishes to you.

Sounds like my husband ;)

I believe it is dealing with the patients anger and trying to understand the anger comes from their frustration. The frustration our loved one has stems from the inability to have control over her life and being dependent upon others for everything. I believe a lack of control and complete dependence upon caregivers must be a very frightening experience from the patients point of view. Of course, dealing with the patients anger and bitterness creates plenty of duress for the caregiver, which is where I come in. I love the 2014 comment about the caregivers arms bleeding and the patient worrying about who will bring her a cookie. True and well said.

Time to look for another home for mom. You can visit her. Built up anger does neither of you any good.

@burntcaregiver.
Yeah I have grown children . I did the walkway thing for temper tantrums . We have started ignoring . He’s still very intelligent, even though you can’t reason with him. Like a smart older toddler.
Need him to get worse so therapeutic lies will start working too. Thanks

@PerfumeGarden

Good for you finding ways to make money from home. People do stuff a lot freakier then foot pics and selling their old drawers and tights to make money. I give you credit for being a unpaid family caregiver (we all know how miserable that usually is). You also have proper pride and self-respect because you refuse to live as freeloader who expects the government to support them. Respect.
I hope you make money and set up that nest egg to get yourself out. Good luck and God bless. ~BC

There are too many things to pick just one.

When they are in assisted living but they insist they don’t belong there. When they insist they are independent but clearly they are not .

When FIL barks orders and wants everything done his way on his time schedule because he doesn’t want his “independence taken away “.

When he says he doesn’t need help . Meanwhile needing everything done for him but refusing showers and assistance with toileting schedule, and expects us to put up with the stink.

When he wants to be taken out for meals, entertainment, take him away on a cruise , take him to see friends 4 hours away , all the while stinking in an old diaper . ( We don’t take him out anymore).

When we offer to bring him lunch because we finally made our own dinner plans with friends but he wants us to bring dinner instead .

When they are spoiled and can’t accept that their age is catching up with them and blame you for the changes .
He wants us to maintain his routine and “ independent lifestyle” but fails to see that our lives are turned upside down .

After a long day at work call up when we are sleeping.
Last night he called because I wrote down haircut on his calendar for Friday next week but I didn’t write the time down . I don’t know what time it is. He’s having it done at the facility every six weeks . This is what I get for putting my foot down and telling the man that we are not taking him out for haircuts anymore when he can get it done at the facility .

The lack of gratitude and the insistence on fighting and sabotaging EVERYTHING I try to do to help!

I cant find the local help I need for in home care for both parents....No one to help and no one likes Medicaid payments.....that is what bothers me the most!!!!

THANK YOU. i FEEL LIKE YOU WROTE MY STORY. aT LEAST i KNOW THERE ARE OTHERS!!!

CAndy, I'm sorry to say it but let someone else come in and caregive for her. Find a new client that is not abusive. There are many out there that would enjoy having you as a caregiver. And less needy to.

The clients that forget that you are human. The loss of respect after bathing them the first time. Its like all of a sudden you've been married to them for twenty years and they can talk to you any way they want. And thats after the first full bath. Not all are like that. But many. Especially if you are related. This is only my opinion from experience. I'm a new live in caregiver. Not new at caregiving.

Candy; write to Grandma's son tonight.

Tell him you are leaving March 1.

Call the last friend you talked to and ask if you can sleep on her/his couch for 3 nights. Or find a low cost motel.

Slavery was outlawed a LONG time ago.

Candy,

Of course, you are depressed and have anxiety. You are young and life is passing you by or should I say that you are allowing life to pass you by.

You deserve better and you know it. You have suffered enough, paid dues that weren’t even owed.

Give notice that you will be leaving and live the life that you deserve! No one is stopping you from doing this except for yourself.

Be brave and let go. This is not a time to hold on. What are you gaining from this relationship? Not judging you at all. I was a caregiver myself for my mom. I’m curious as to what is keeping you with your grandmother who didn’t help you as a child.

Best wishes to you.

i’m gonna be honest here, because it’s rare i get to do it in real life. EVERYTHING about caregiving bothers me. i don’t feel fulfilled and i don’t feel like i’m doing a noble thing.

backstory? why not.
me and my sister were adopted by our grandparents when we were 6 & 11 years old. our grandfather was abusive in every way you can think of… ways i can’t mention. we used to ask our grandmother to help and she would reply that there was simply nothing she could do. she just told us we better not tell anyone cause she had an image to maintain at church and within the family and community. of course there was tons of resentment. when our grandfather passed away, i was 17 years old. i graduated high school and finally started to embrace being young. i partied and kind of lost myself a little bit. i finally started to learn who i was around 24 and BOOM, my grandmother has several strokes and is diagnosed with dementia. i am thrown into a caregiver position by her son (in his 50s at the time and very financially stable) because he said me and my grandmother would both benefit from living together. me financially and her with care. fast forward to age 28, i’m doing very well at my job. lots of opportunities coming about and i met the love of my life. by 29, i’m no longer able to work. i’m not able to spend time with my friends or boyfriend. i can’t leave the house alone to shop, go to the doctor, get a haircut, workout, take a deep breath. my grandmother is extremely combative, aggressive, uses foul language, and is the most hateful and unhappy person i’ve ever been around. she has to have help with absolutely everything, including bathing and using the bathroom. i’ve asked her son for help NUMEROUS times and he just tells me he’s too busy. he says i’ve had the pleasure of staying in this house even though i’ve told him it’s falling apart and we’re not financially able to realistically support 2 adults, one without income. he never visits, hardly ever calls. i’ve handled everything by myself for 6 years. now i’m 30 and i’ve matured more than ever. i have jobs offered to me that are exactly what i need for my career to take off, but i have to decline. i can’t even spend time with my boyfriend unless my grandmother is right there with us, cussing us out and throwing things at us. it’s ruining my life. i hate the situation i’m in. everything about it brings me pain and suffering. i wake up in the morning and wish i could go back to sleep. i have no control over my life and i no longer feel like myself. i don’t think this is what 30 should feel like.

SO SORRY for the long winded bs. i’m just struggling right now with severe anxiety and depression… although i have people to talk to, no one understands because no one has been through this. if you read this, thank you.

Isolation when living with an elderly parent

...that I can't fix my wife!

Every single thing. I hate it. I've got four remaining elders. Three with dementia. The fourth has no cartilage in his hip and a bad heart, so he can't walk anymore...but he's waiting for Jesus to heal him. The doctor said he'd never seen such a severe case, and still Mr. Martyr, the only allegedly sane one of the bunch, won't even consider it. The other one has dementia and is bed ridden. Yikes! Nothing positive about this experience at all, except it's made me prepare better for my dotage.

The worst is the critical and oblivious uninvolved siblings. I took care of both my parents . My siblings waited until near the ends of my parents’ lives to “get involved”. My sister was angry that I started a phone chain to give information the last few weeks of Dads life . That wasn’t good enough , she wanted a personal phone call from me each night and said she was entitled to that. I was working , Dad was in hospice , Mom at home with Dementia . I was also raising a teenager . After Dad died , had to put my narcissist Mom in assisted living a year later as she could no longer be left alone and was very uncooperative and hit me . Sister-in -law criticized me for putting mother in a home . Meanwhile same sister-in-law who was retired took her own cooperative mother to assisted living . Now hubby and I dealing with his father’s dementia . He is in assisted living , demands to be taken out to dinner weekly , asks to be taken on a cruise , yet the guy won’t shower or change his depends . Now have step sibling on that side complaining that her inheritance money is being spent on assisted living . Most of the money was Father in laws. His second wife was broke when he married her at 60 years old . And all the children were adults and out of her house . Hubby’s mother ( divorced hubby’s father ), lives in another state and will be difficult as well , she will be needing assisted living soon. She says she won’t go to one of those places . Hubby also has an Uncle with no children who we will be left to deal with . Hubby’s brother no help , but he wants to visit family and expects us to pick him up and play host . He isn’t getting why we tell him to rent a car from the airport and visit these elderly relatives on his own . We don’t have time to host a reunion .

What do you expect? For each of us it's all about us, but we learn that is not so and modify our attitude. Now she has reverted to that earlier state. She will be that way forever.

The crushing feeling of responsibility 24/7. Feeling alone is a very close second. My dad has Alzheimer’s. I have 4 siblings, but they all live out of town - the closest is 4 hours away. My husband is also ill (with IPF) and we have an 18 year old just finishing high school. Even in the rare quiet moments, I just can’t relax.

There is no off switch…

The worry. When you care, it's very hard to completely stop worrying, for example enjoy your vacation and just not worry. My mom has caregivers.

Feeling like this is a never ending situation. I could be at this for years and I find it depressing to think about. I’m so tired of it.

Not being appreciated, and having to do this all by myself. This isn't my first go-around either, I did this first with my grandmother, then my grandfather, then my mother but I did have help with my mother my father helped with her but now it's just me caring for my father. And he doesn't even like me. He doesn't even try to hide the fact. When he speaks to me it's a growl unless hospice is there than he will use words.

The one thing. My life has been put on hold. I have many things I want to do and I am confined to my home to take care of my wife. I’m only 63 and have so many things I want to do.