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I would say:



Whatever you do, don’t lose sight of your own life and health.

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Abandon all hope ye who enter. It's just about the most unfair thing put on any human being in the modern system.

My father quit when my mother died, and now he thinks I made up everything he did.

You don't owe your parents, our society and culture owes them a viable chance to continue living gracefully if they can.
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When it comes to dementia of any kind, Google sucks, ya gotta look alot deeper than just a simple one page article on any form of dementia. There is so much more involved, that I never new.
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I would say, 
Research in advance!

 -PREP BEFORE you get deeply ENTRENCHED 
Look at Options, Best/Worst case scenarios, Other People's Experiences. Because your parents May Not have Planned Ahead for any of the inevitable. What's the WORST you've seen your parents act? That (and worse), may become the person you're caring for 24/7 daily. Although they might seem OK, Logic an Reason may no longer work with them. Keep all this in your back pocket for future reference.

PROTECT and Conserve Your Resources EARLY ON
 -Time, energy, finances etc. You may help your LO over a hurdle, but they'll Keep Declining and you'll become tapped out more and more. And Please Protect your Health! Caregiving CAN HURT YOU also

I'm playing a bit of Catch-up lol. But getting there now
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I know you think YOUR siblings will help, because YOUR family is different....... but you'll be on your own faster than you can imagine.
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I would say, don’t become a primary caregiver for a parent. I wouldn’t recommend it, even if you are fairly compensated. It’s too difficult for many reasons.
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Don't ignore the signs of burnout and tell yourself you're "not giving enough." You are trying to do too much. I should have seen the signs over two years ago but I naively believed after six months things would be okay.

This will be longer than a sentence, my apologies. It all really started to go downhill after Mark had to get chemo, proton radiation, and then immunotherapy. He had a bad reaction to the RBC shot and he already had severe arthritis in one hip. He took about three major falls, one probably causing a hairline fracture. This caused osteonecrosis that literally ate most of his hip. He was bed bound for two months before he could get the surgery. I expected a longer recovery time as he had been bedbound and his hip surgery was more difficult than a more routine surgery, but it turned into a fiasco. He could not move that leg below the knee, period. This was with PT and over a month in rehab (more like two months). He became wheelchair bound but I was still able to help him do basic transfers to the bed (it was a Hoyer lift before that), into the chair, and into the car, so life went on.

Well, he then got a ulcer on his leg that refused to heal even seeing a wound care doctor three times a week. He had a wound vac on this, skin grafts, and was hospitalized for three weeks to fight off a bone infection. All this time I have a full-time job and then come home to take care of him. I have to help bathe him, transfer, and get him to a bedside commode.
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Well, for the "too long/won't read the rest" I'd say "be aware of signs of caregiver burnout".

My mother's detertioration was very slooooooow and steady over time (she didn't just, example, have a stroke and go from 100 to zero...it was a long process over about a decade of her declining ability to take care of herself) but I was STILL majorly burned out by the time she fell and I had to start the nursing home/Medicaid process.

I didn't even know I was "caregiver", as strange as that sounds. First of all, I have no people skills, have NO INTEREST in nursing/childcare/caregiving and am childfree and purposely had no kids because I can't even stand taking care of myself most times. Secondly, her progressing problems were, again, so slow I just had no idea what was going on until it aaaaaall hit the fan.

I couldn't focus on my job, and I was late almost every day. I would fantasize about someone, ANYONE, helping me and taking her away for even a day from me after she became almost immobile. I couldn't have any mental space from her. She would criticize everything I did morning until night while just sitting there and I'd wonder how to get away as vacations and days off from my job literally didn't help. I was needlessly irritable inside and anything would set me off.

Watch for those signs and try to help yourself somehow if you notice them creeping up.
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When you feel desperate and alone, don’t give up hope. Bad times go away. Suddenly the storm is over, and you see the sun.

🥰
HAPPY NEW YEAR, to all!
A fresh start!!
Dust off the past!! Soon it’s 2024!!

Everything is possible. You’re alive.

Be happy to be alive.
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Even though you think you come from a big “family”, don’t expect anyone to be there for your LO or yourself. Know you are going to feel more alone than ever. And you will miss out on everything you use to do, even going grocery shopping will become rushed. You will hear every excuse under the sun. When your LO passes know your CG days are still not over. You will be responsible for your LO possessions and money. The ones that were no where to be found will suddenly want to be in control. You will still feel alone.
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that is such a true saying. Especially the last year, I feel I have put my own life and health on the backburner , and focused all my attention on my husband who is stage 3 alzhemiers. 2024 will mean some tough decisions re putting my husband into permanent care, and although I know in my heart that it is the right thing to do for both of us, gosh it's going to be hard emotionally! we are both only 69yrs, been married 51yrs, and he has been my soulmate. But the past 3 years have been so lonely for me (friends and family can't replace the intimacy, conversations of shared memories etc with my husband) and I feel I 'lost him' a long time ago. This is such a cruel situation for both of us. Sorry, New Year's eve and just put him to bed and feel so alone.
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Just say no!
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Guard your health and mind like a pit bull.

Realize there comes a point where you can do nothing more. Pay attention when that point arrives.

Live. You are not helping anyone if you don't live your life; it only causes frustration, depression, drama with others and poor health
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Caregiving is going to last much longer than I think . Try to Insist on LO’s allowing hired help to come in the home to take some of the burden off , or start refusing to do as much so they see they need help . After awhile it can become a big burden trying to juggle everything without more help .
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Save every penny you can. Nobody else will do it and you'll have two broke seniors on your hands and no way to work without having to drop everything for their care.
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Don't get involved. Let the chips fall.
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akababy,

Yes, all of the things that you mentioned are important.

My grandparents and parents made all of their burial arrangements as well. It makes things so much easier for everyone to plan ahead.

My mother always made sure that we knew where all of their important documents were stored.

I’m sorry that your family had loose ends that weren’t finalized. It’s nice to be able to be at peace with knowing exactly how things will be handled.
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NeedHelpWithMom - the burial arrangements and momma having enough money is no problem. I do not pay for anything. It is just my husband and me and he knows that I want to have our matters set up way before. Dad had already purchased the burial plots for him and momma. For us kids too and I went ahead and pre paid what I could on mommas funeral. What I was referring too is I wished dad did more research on what he wanted done before his death. I wished that he talked to siblings about how things were going to be split. Same for momma and me for that matter. He wanted a trust set up to not only take care of momma but also take care of us kids and our kids but there were some roadblocks. He wanted his iras to be put in the trust. We couldn't do that according to our cpa and attorney. It took me two and a half years with the attorney and mommas money to try to get things kind of set up. Also on the distribution part we had more issues. Dad never told me him and momma had a promissory note on a townhouse they once owned. Also he never told me that he was giving me some property in another state. Momma never understood any of it. Still doesn't. I have spent the last 13 years trying to explain to her and my siblings how it works and what to expect after momma is gone. I have given up. They do not want to try to understand. Momma can't help it though. All they do is stick their hands out and expect money. They are afraid that somebody is going to get more than them. I tried to get dad to go to the attorney and/or make some phone calls but he never did. His will was 11 years out dated. Then he got sick and we lost him. I had to figure things out with my attorney, our cpa, the internet and wherever I could find info. and then being treated horrible by my family on top of everything because they feel like they are not getting any money. You see my parents have helped out my siblings for the last 25 years or so and when the gravy train stopped they threw me under the bus and don't want to have anything to do with me. Maybe if some of these issues were addressed before we lost him I wouldn't have this huge responsibility and hurt?
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akababy7,

You bring up an important topic. Please let others know what your final wishes are. Don’t place your spouse or children in a position of not knowing what you would have wanted.

For example, do you wish to be cremated, have your body donated to science, buried in a family plot? Service or no memorial of any kind? Do you prefer a celebration of life? Do you have a will made? Etc, etc, etc..

If your parents don’t tell you their specific plans then feel free to make your own selections on how to proceed. Do make sure that what they want isn’t paid for by you if they don’t have adequate funds for it. Pay for it only if this is what you want to do and can afford it.

Ask them directly what they desire and hope that they will acknowledge that you are doing your best to plan ahead for their final arrangements.
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Do your homework before agreeing to live with someone who has dementia.

Think with your head not your heart, the heart is not able to rationalize, that is not it's function.
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Don't do it. Should have put her in assisted living sooner. Would not be the primary caregiver, medical and financial POA, Trustee and Executor. Would have asked dad more questions about his intentions before he is gone and encouraged him to go to the attorney to get everything straight now before it is too late. I wished dad would have talked to momma and siblings about his intentions and what is going to happen after he is gone but then again I don't know if that would have helped.
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I would warn myself that this is going to go on WAY longer than anticipated. Years and years. That mom will outive everyone, just about literally, and linger in stage 6 mixed dementia purgatory for absolute ages. I love my mom but through a mental wall as she’s been relentlessly difficult until her seizure. The difficult ones seem to last the longest, don’t they?! I want peace for all of us…
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I can’t even imagine going back in time. It was hard enough the first time.

How about having a magic eraser and wiping the entire episode clean to where it didn’t exist?

Seriously, if a time machine existed, I would go forward, not backwards! I absolutely adore science fiction movies that portray time travel.
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That LO may someday say they are finished with being poked and prodded , No more hospital trips , or procedures, no tests, no more rehab and dreaded PT , and they want to just rest .
This is fine. Don’t push them to “ get better”.
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I wouldn't warn myself, as I felt my level of CG for my FIL, dad and mom were well within the appropriate boundaries--right to the end. They didn't linger long enough to be burdens, which none of them wanted.

I would not just WARN--but flat out tell my DH he was not going to do In Home care for his mother. She's sucking all the joy out of his life-it's truly tragic, yet b/c he retired from his beloved job TO take care of MIL---and we thought she had a few weeks, I never said anything but that I'd be supportive.

If I had known, I would have never offered support for the stupidest decision ever made by 3 'intelligent' adults.

I truly don't think he will recover health wise, physically or mentally from this experience. It has been truly awful with zero 'happy, loving' moments. If he hadn't disliked his mother before this experience, this would have tipped the scales.

She belonged in a care facility 11 months ago. She belongs in one now, more so than ever. And she will NEVER, under any circumstances, leave her home.

I've watched a funny, quirky, lovable guy become someone I don't even want to look at anymore. It's only faith that she will one day pass and this will end that keeps me going, and from leaving him for a calmer living situation.

Am I bitter? Oh, my. I can't even begin to describe it. I probably don't have 10 years left with my DH (he's 17 years post liver transplant). He has sacrificed so much for someone who really doesn't deserve near what she's been given.
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Boundaries. SET BOUNDARIES.
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Ignore the visiting flying monkeys .
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Try not to burn yourself out and find something that gives you a little peace
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notthemomma,

Hold on, wait a minute…

Then we wouldn’t have material for our reality show, family sitcom and standup comedy act!

LOL 😆
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I would stop myself from EVER doing this - Remind myself this is the WORST and NEVER EVER allow them to live with me & my family!
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I'd warn myself that this is absolutely the worst thing I could do to myself. Find a nice assisted living facility and visit them there.
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