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What bothers me the most is my own mind. I'd like to switch it off for a few minutes. But my mind keeps racing with different thoughts and worries. Perhaps it's not my mind that bothers me. Perhaps it's the worries themselves.
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Msblcb May 2023
I was the same way because there was always something to worry about….the latest illness, meals, meds, doctors…..and when my mom died it took me weeks to not think I was forgetting something. It is hard to shut the worry off.
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Losing my freedom! Feel like a prisoner in my own home. I can't go anywhere for extended periods of time. For 30 years I spent my summer vacations visiting her (she lived in a different state) and now I would like to go on summer vacations with my husband. This now entails hiring a seriously expense caregiver in order to go. She moved in with me 5 years ago and doesn't really have any friends here because she lived in another state all that time, so there isn't anyone for her to visit etc. My brother stopped helping the minute I stopped paying him to do so.
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S7Catherine May 2023
If your mother has her own money use that to hire a caregiver while you are on vacation.
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Karen, it seems you are the 'Mother' but your siblings are merely the 'babysitters'. (They don't have or feel the same responsibility).

I am not sure what the 'cure' is besides putting in your own stops & arranging the extra help you need. Easy to say. Sometimes very hard to do. Strength to you today 🤗
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A couple of things....when my mom stays with my siblings, I take care of her meds, laundry, doc appts, scripts, oxygen supplies, every health concern and grocery shopping. When she's with me - I still do it all. I don't have help except for a meal here and there. It doesn't matter that I ask nicely, yell, set a schedule with siblings - it all goes by the wayside. I don't get how they don't realize /care how much a little bit of help goes a long way. Secondly, my 95 yr old mom is pretty easy but doesn't really try to make things easier for me. Someone said in another post you just have to say no and do what works for us, the caregivers. That really resonates because it's hard to say no to my mother who I love and enjoy most of the time and is still there mentally. Her body is failing and I know it's hard, sad and frustrating. It's also not going to get better and yet it seems she thinks she should get better. Where's the gratefulness for living 95 pretty darn good years?
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@linda06.
Can you get your parents placed in a facility ? Is that an option. Do they have money ? Or Medicaid ?
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My dad is so demanding and doesn’t think of me or my health, he’s not real with it right now. He follows me around the house in and out of the bathroom a million times then wants me to cover him up when he gets back in bed. He wakes me up in the middle of the night to cover him up. He definitely has mental issues. I’m at my last rope he’s killing me.
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Having to hound anybody for true help. Doctors, home health, medical equipment suppliers, therapists, etc. I feel like I get nothing done if I'm nice kind and patient. I have to turn on my grouchy b*tch attitude for people to truly understand that I NEED HELP!!!
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NeedHelpWithMom Apr 2023
You do what you have to do to get things done. Sad but true.
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squirrel, i get every word you're saying. ❤️🙂
and i love your screen name. i bet you're a cute, sweet person.

when i have so-called friends asking how my LOs are, i actually block their numbers. they're wasting my time AND adding yet 1 more thing for me to do: write back, etc.

my true friends really care. and my LOs' true friends really care, too.
----

i wish all of us on the forum a good day! courage & always do very nice things for yourself. treat yourself like the angel you are. ❤️🙂
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NeedHelpWithMom Apr 2023
Bundle,

I love how sensible you are! All of us need to value ourselves. We cannot allow others to steal our joy. I spent a lot of time and money in therapy learning these lessons. I feel that it was money well spent.
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Hi Everyone,
What frustrates me the most about caregiving is the fact that in order to get services I have to be the one to stay on it...to keep calling these agencies for a PT, or home assistance, and this is even after a doctor has given me an order of approval. This last time the physical therapy never started because it took so long for them to get evaluators (nurse and supervisor PT) out and this was after I called them twice. Now the session will end in a week and my mother has not even begun the PT. This has happened before. My other "pet peeve" is people who know my mother from way back (she's 92) and ask me about her; sometimes they text me and ask. I say it would be better to call her and chat a bit, so she can hear a voice; so she can be part of a conversation where maybe she can laugh and remember. And to my friends, do not ask me how my mother is doing unless you are ready to invite me for coffee and offer a real, compassionate ear. Because you will get an answer of "okay" and I will turn away. The nicety is not needed because you really don't want to hear the answer. Instead, if you want to support a caregiver friend, ask them out; give them an escape; give them little of your time, because they feel isolated, just as much as the loved one being taken care of. This may be mean, but I want to say "Don't ask about my mom, unless you really want to hear about her."
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Madisoncuckoo7 Apr 2023
Oh boy, this!!

Mom still likes her calls but people still ask me instead of spending literally 5 minutes once in a blue moon to call her themselves. I think they don’t really want to know the truth….they probably want a happy lie from me. We’ll they’re not gonna get it! I tell the truth albeit ( grudgingly lol ) politely
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The fact that there are only 24 hours in a day but since we are living the lives of 2 people (ours and our loved one's) then we really need an extra 24 hours in the day to do everything that needs to get done ( including making every single minute decision)
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The overwhelming sense of failure that you have when they die. You did not cause it and, Yes, you did everything you could possible do to control it (which is impossible)....and they still die. You spend years mitigating every single issue, resolving every problem you can...and they still die. There is never a positive outcome.
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That my mother does not get at all how stressful this has been for me for the past four years. I have tried to talk to her about getting help but she refuses. She truly believes that I do not do that much for her. She made the decision that she was never going to move out of her house, which I get, but did not involve the one person in that decision that allows her to remain in the house . . . me. I work full time, and the stress of having to worry about everything with her is exhausting. And yes, it's the same as with Marialake - everything is also about her all of the time.
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bundleofjoy Apr 2023
and i bet, your mother didn't caregive for her mother. otherwise, she would know the huge effort it takes.
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Drama
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bundleofjoy Apr 2023
i don't know what it is about people who like to start: drama, chaos, conflict, bad feelings in others. i think it gives some people a high.

hug!!

bundle of joy
(whose real name means peace)
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The endless guilt. No support from anyone. My older sisters using Mom's move to a nursing home (which they do support) as an excuse to unleash every criticism against me that they've been storing up for 50 years. How mom's been abandoned by her grandchildren, who have never visited, called, written, texted... nothing. Crickets. At this point, if I never see or speak to any of them again, I'm good with that.

But that's all right. I'm strong.
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Hothouseflower May 2023
Good news is someone else is doing the heavy lifting now. You can be a daughter and not the hired help. Ignore the sisterly criticisms, do not worry who has been in touch with grandma or not. That’s on them. Go take a vacation and try to remember how it is to have fun.
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Taking care of a person with Alzheimers is probably one of the most difficult and least rewarding tasks you will ever do. However there may be a group in your area of other people in your situation. You may want to look into this. It is a safe place where you can vent your frustrations and maybe get some emotional support and ways to help you understand what is happening with your MIL.
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My parents’ financial and health situations are weighing on me. I find myself anxious and nervous most days about everything.
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Way2tired Apr 2023
I’ve been there too, on and off many times. It makes it impossible to enjoy (your own) life .
I’m sorry Hothouseflower.
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The mindless ignorance of others who can't possibly "know" or understand "most caregivers" well enough to judge them to be inadequate.
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Ariadnee Apr 2023
Being sarcastic:
Since we're doing everything, why bother to offer to help out the caregiver?
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Watching dementia taking over my husband.

50+ years of dementia research-not a thing to show for it. Nothing.

Palliative medications to manage the symptoms. Nothing else.

This bothers me the most.
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Way2tired Apr 2023
So sorry. This is especially difficult because it’s your spouse .
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Just doing the same thing everyday! No day off or vacation. I take care of my 96 year old mom with dementia and my brother who has cbs,( corticobasile syndrome). He can’t feed himself or walk by himself. Thank goodness they live in the same house. It’s all day, do this or do that. Nothing much else gets done. I feel bad cause her house is not being cleaned like it used to be. My day is breakfast, laundry, taking him to the bathroom all day , giving them both snacks, then supper. At my wits end. Can’t even hang out with my grown kids. I could go on and on.
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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 .
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Beatty Apr 2023
Going to flip. LOL

Tell him he'll be burning up the hallway carpets in no time!
He can use the new wheels or stay room-bound. His choice.

(I'd choose wheels & freedom).
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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.
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What bothers me the most about caregiving?
Today, davidmiller2.
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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.
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Sounds like my husband ;)
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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.
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Ariadnee Mar 2023
One time I hit my knee really hard against the coffee table-(I'm a klutz) so painful I was on the floor. Husband kept watching TV, didn't say a word while he was changing channels and eating pretzels. Yep.
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Time to look for another home for mom. You can visit her. Built up anger does neither of you any good.
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@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
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NeedHelpWithMom Mar 2023
Way2tired,

So many people will relate to what you are saying. No one has all of the answers for every situation. It’s trial and error. Wouldn’t it be great if everything was, ‘one size fits all?’ Unfortunately, life is never that easy.
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@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
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There are too many things to pick just one.
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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 .
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BurntCaregiver Mar 2023
@Way2tired

No one has to tolerate any of what you're saying. I did elder care for 25 years. I never tolerated anything near the behavior you describe from your FIL. He's in AL not living with you. He complains too much or gets too demanding on a phone call.
Hang up.
He stinks too bad in a soiled pull-up and because he refuses to let an aide help him wash properly.
You don't take him anywhere. You stop visiting or limit the visits.
The more families and caregivers cater to fussy, ornery, stubborn seniors the worse they get. It's the same as with spoiled, brat kids. If their behavior is dementia related, then they should be cared for by professionals.
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