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It’s understandable how you feel. I am glad that you have him in a 24/7 care facility now. Many of us have our dementia family with us at home. Ugh! You have been through the worst part of it. Now just oversee that he is being adequately cared for (food, medications, hygiene) with weekly calls to his nurses. Start planning fun times for yourself. No more guilt. Your brother will not remember what he did yesterday or remember what he is currently doing. Make your visits with him memorable for you, and nice for the moment for him. Read as much as you can about Alzheimer’s to know that you are doing the right thing. This forum has a wealth of information. You may have to intentionally appease your brother during certain conversations during your calls/visits with him. It’s necessary in keeping him peaceful. It’s okay to say little fibs. Know that the memory care facilities deal with this on an all day basis and have a lot of experience. You need to let go some for your own sanity and not feel guilty. Feel happy that all the burden is not all on you any longer. I know that you love him and it’s a difficult process. It does take time for the adjustment. Fill your life with whatever makes you happy and peaceful. His life is mostly out of your control and now in Gods. Prayers, exercise, yoga breathing, eating well, and planning a vacation or time with friends will be very helpful. Sending hugs. You can do this!
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svking Feb 2023
Thanks for the encouragement, DianaGearhart.
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Yup..I am burned..in my 5th year.moved here to become moms everything….I am going to counseling.
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svking Feb 2023
Thanks, Sadinroanokeva. I find counseling with a LCSW is very helpful, but sometimes I need to just counsel myself. No one can really understand what I'm going through unless they're walking in my shoes. That's why sharing with other caregivers helps me the most.
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I get it, I have been in caregiver mode for 11 years. first 2 with a SIL with brain cancer and a BIL with a stroke housed in an NH 1800 miles away but being the primary caregiver even via phone is taxing. Then mom died and we took dad in, 1000-mile road trips every other week for 6 months then moved him in. It was the third house cleanout in 2 years for me.

First few years he was ambulatory and able to drive. a few years ago I took that away from him. The hospital stays the knee replacements, falls, the dr visits, and medicine management. Now it is more falls and more surgeries. Neuro, urology, all of the oligists.
Lately, he's been downing chocolate like a kid the day after Halloween. So he fell, he said he stood up and fell, BS was out of site, Not eating and just downing chocolate.
He buys bags when he is out with his friends like I won't see it. He gets out 4 times a week and eats chicken fried steak, burgers, fried clams, and anything not healthy. the man eats out more than I do, and as soon as his check arrives he's like daddy warbucks spending taking people to lunch and dinner so he can get out. So, after I got him up, fed him some chicken since he had not eaten all day. I made dinner, my wife was out so we had a come to Jesus meeting, probably the 100th one I have had with him. Next time you fall you may break a hip and then you will be someplace other than here and it will be 3 squares and a cot and not a nice place. Yeah, this will last a week again.

I am tired, my nice button is broken, he fell and I had him get himself up, showing him he can do it. I did help a little but he is closing in on 300 lbs and me being 62 I can't pick him up.

I've been doing EMS for a long time and my nice button is broken there too. After a long time, you get burnt out. When it's in your home it gets bad. When you have no family help it gets really bad.

Trying to schedule my vacation time with my wife and I can't get my sibling to take more than 2 weeks and tells me their house isn't safe. Really? I live in a 3-story house let's talk about stairs.

Tired, burnt out, and just plain grumpy. There is nothing that works for me other than getting away for some time but that is only once a year now.
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svking Feb 2023
Thanks, tgengine. I also have trouble with my "nice" button. It's an effort just to keep pushing it!
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Been in compassion fatigue . Took care of both my parents for many years . At the end for Dad he died in a facility in hospice 3 months after being hospitalized for the last time . A year after Dad passed from cancer , had to place Mom in AL due to her dementia . She would not listen to me , bathe , eat etc. Mom was also a narcissist . Her narcissism took over and doctor said Mom needed to be in AL because she needed to be taken care of by someone who was not family . Visits with her were horrendous at first , she was very angry that she was in AL. Then the visits got less horrendous for a while . And would have better visits . As her dementia progressed she got a bit more pleasant . But it was still exhausting because it was sad to see her declining . I found myself also not talking with staff as much or visiting as often . Now my husband are dealing with my FIL in AL. He also has dementia and has been insisting he doesn’t belong there. He won’t bathe . He sits in the sand Depends until it leaks all over . He was doing that at our house as well . We don’t bring him back to the house anymore . His dementia has slowly gotten worse but he’s now getting nasty with the staff and most probably will start being nasty with us as well . My husband and I are tired of trying to persuade him to let the staff help him . My husband especially feels guilty because we don’t like visiting him . FIL was not involved with our family , my husband or our children . He was on his second marriage soon after my husband and I had our first child over 30 years ago . FIL totally immersed himself in his second wife’s family and her grown children and eventually her grandchildren as well . His wife passed and we’ve been dealing with FIL who complains he misses his step children , who never come to visit him as they live 2 and 3 hours away . My husband is torn between guilt and resentment . It’s his father so he feels like he should visit but at the same time he hardly saw him or heard much from his Dad for the last 30 years . You can only do your best . They are placed where they belong . That’s the obligation that is met . You have to take care of yourself. They aren’t going to get better .
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svking Feb 2023
Thank you, Way2tired. I think "owning" the reality that there's nothing that's going to get better is part of the emotional battle.
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You have done a lot for your brother. He is now in a place where he is safe and well cared for. Please continue to visit him as often as you can and oversee his care, but it's time to also have some "you" time. The visits to your brother should be just to reassure him that someone he loves is looking after him. Spend the time with him and try to be upbeat and make the visit a happy one for your both. Is another move in the picture, or are you satisfied living near him? Make some plans for your own life, to do things you enjoy or will make your retirement better. Take a vacation. His senior residence can contact you by email or mobile phone if you are away and they need to let you know anything. Join some groups that interest you. Get involved with your local community. It might also be good to join a senior caregiver group, if you think that will help you. Please don't feel guilty. You are being responsible and overseeing his care. You also need to tend to yourself. All the best to you both.
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svking Feb 2023
Thank you, NancyIS. I have considered a move to an independent living facility. At 71, I know I will need my own care assistance eventually. I'm trying to plan for my own future, as you say. It's difficult because I'm a "transplant" in the city I live in now. I have to research what's available before I make any decisions about what to do. It's a job in itself.
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I was in "super-caregiver" mode.  No, you did what you felt was necessary and right although effective care providers (not super) take care of themselves along with another. If you do not, you cannot continue to function and you will wear out.

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Below from: https://www.ucsfhealth.org/education/self-care-for-caregivers
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The physical and emotional demands of caring for a loved one with a serious illness can be exhausting and even lead to burnout. It's important to maintain your own health and well-being so you can provide the best possible care. 
Here are tips for handling some of the common challenges for caregivers: 
Take time for yourself and your own needs. Watch for signs of stress, such as impatience, loss of appetite or difficulty with sleep, concentration or memory. Pay attention to changes in your mood, a loss of interest in usual activities or an inability to accomplish usual tasks.
Eat a well-balanced diet. Drink plenty of water every day.
Exercise by taking short walks daily or at least three times a week.
Listen to guided relaxation recordings or relaxing music.
Schedule short rest periods between activities. Make it a priority to get a good night's sleep.
Set limits for what you can do. 
Don't overload your daily to-do list. Be realistic.
Find a few hours several times a week for activities that you find meaningful and enjoyable.
Let family members and friends help with household chores, meal preparation, childcare and shopping. 
Keep the lines of communication open among your loved one, you, your family and friends, and the health care team.
Share your feelings with family members or other caregivers, or join a support group.
Give yourself credit: The care you give does make a difference.
You are not alone. UCSF Health offers experienced and sensitive social workers and case managers to help patients and their families cope with illness, hospitalization and medical treatment.
Adapted from "Self-Care for the Caregiver," Oncology Nursing Society, 2001.
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You have set very unrealistic or idealistic unattainable goals for yourself with what you believe is a super-caregiver. Yet, a person being effective(not super) must process through the feelings that hold you back from being as effective as possible, i.e., guilt. A 'super-caregiver' needs to face these feelings 'head on' with lots of self-love and self-compassion ... and create a new model / belief system that will work to your benefit and the benefit of your loved one.

No one can run / work on empty.

How to get through exhaustion (which is what I call it) ?
Every day, you need to do something(s) for yourself to sustain yourself, your energy, your ability to be present emotionally and psychologically.
* Get enough sleep
* Eat well - get your nutrition. Don't under or over eat.
* Exercise
* Relax, meditate
* Find 5 minutes to several hours of 'me' time -take breaks often
* Find support either paid caregivers or volunteers so you can get respites / time away. You must renew yourself.

'Super' is often misunderstood. Super-caregivers take care of themselves so they will be available to another. And, reframe that word as it is sounds like a judgment, i.e., if you aren't a super-caregiver, then what are you? a mediocre one? While I wouldn't use this term personally, I would say that a 'super' person is one who takes care of themselves and knows how to set boundaries. You are as important as your brother.

Yes, having these responsibilities to another in need - and caring for yourself is certainly not easy and often most of us are not trained to do this. We are presented with circumstances requiring us to give more than we have to another (or some with kids may not agree here...) while taking care of our self.

Take a st
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bundleofjoy Feb 2023
hug!
have you done it yourself = have you cared for someone, and simultaneously successfully cared for yourself?
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I get it. I’m dealing with my parents who are both 94 year old.
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blickbob Feb 2023
That's how it is with me. I'm my mom's lone caregiver plan.
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