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I could write multiple books on everything I have learned taking care of Mom. All the lessons taught were hard lessons.

We have had several relatives and friends who have had to go through the exact same thing with their parents. We tell them exactly what will happen and what they should do. They don't always take our advice, but we have never had anybody tell us we were wrong.
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Yes , I made a mistake by promising not to put my mother in a facility .

Do not make that promise because it can not always be kept.
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BurntCaregiver Jan 6, 2024
@Way

Not being able to keep the "promise" isn't even the issue. No one should even ask such a thing.

I cannot for the life of me ever understand how a person can claim to love their family then commit the most selfish and narcissistic act their is. The promise to never put them in a "home".
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I see that both things I would have listed have already been said.

* You cannot reason with a broken brain.

* I will not expect of my children what has been expected of me. And since they have not been helpful with their own father's situation, I'm not about to believe they'll be there for me. I sure hope that the inheritance from my 93yo father allows me to buy into a retirement community, and I will live out my life there.

Does anyone else follow Peggy Rowe on Facebook? She is the mother of Mike Rowe, the Dirty Jobs guy. She and her husband (she calls him PC for Prince Charming) live in Oak Crest in Baltimore, a CCRC. On Christmas her husband had a heart attack. Her comment on a recent post was, "I’m still counting my blessings—for kids who take turns being by our side—and for moving into Oak Crest BEFORE we had to." That's my goal, get in somewhere before I need it.
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Frances73 Jan 8, 2024
LOL when my siblings stepped back from helping or visiting with my parents I always silently said to myself “this is the example you are sitting for your kids, just wait until you need help!”
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After years of watching over my mom and her death in 2022, I have come to the conclusion that my own expectations were just too high. I expected that I could be the super human all the way to the end. It is terrible when you find out that you will never be strong enough to meet your own expectations.

Those expectations are set before you realize what you are getting in to. Then, as you realize the difficulty, it is hard to reset your expectations to a more realistic level.

Hope I am making sense. Over a year has gone by and I still focus on my "failures" rather than my accomplishments.
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In response to OLDDUDE, I can't say I have mastered it but I have learned to TRY not to tell others what they "should" do... rather I now try to remember to start with the phrase... "What has worked for me was........" OR "If you have not already, you might want to try........!

I know, the longer I am a caregiver I do not like being told what I should do because often it is something I have tried and it did not work for me.

It definitely is easier said than done... and I am still guilty of using the word ''should" and often regret it when I sense a bit of tension rising.

However, I agree with his statement "but we have never had anybody tell us we were wrong" because so many new caregivers are not aware of the many resources that are out there.
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Frances73 Jan 8, 2024
God advice. After 5 years of dealing with elder care for my parents I have a firsthand knowledge of facilities, financial issues, government, medical, etc that I very carefully impart to friends and family in similar situations. And I try to preface it with “this what I learned.”
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I was a caregiver for my verbally abusive mother with bipolar mental illness. When she was 92 and suffered several fall injuries at home, I was in charge of her pain medications and money. I did what was possible to enjoy some fun. And, I did not put up with her complaints and anger when things did not go her way. Mom lived with me until age 93 in 2013. Thank goodness my out-of-state sister and brother was available to work with me remotely until it was time for her NH facility placement. I gained wisdom through prayers and patience. After her placement near my brother, I was eventually able to return to temporary work at 58 and a permanent job at 60 in 2015.
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Needausername: My out of state caregiving for my mother was a lesson confirmed - don't do this to your own adult child. Many friends and even family members asked me if I was crazy to leave my life behind to move in and care for my mother seven states away. Maybe I was, but I couldn't let my mother continue to live solo into her elder years with an entire host of ailments even though she was adamant about doing so. Zero wisdom imparted; I barely kept my sanity as an elder myself.
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BurntCaregiver Jan 6, 2024
@Llamalover

I hope you were able to get your life back. Many are not after their indenture of caregiving term is up.
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Mine was that I don't have to keep bending over backwards if my mental health is getting ruined and I get more blame than appreciation coming my way.
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This is a several volume response.
Unlike most here, care providing (initially caregiving and then I moved into care management, training and managing caregivers) and coordinating medical and many other needs) has been my professional for the last 12+ years. I've always been self-employed. I've worked with individuals from ages 65+ to my now current 104 year old client.

Several years ago, I studied on-line webinars with Teepa Snow, one of the country's leading experts on dementia - to learn how different parts of the brain work / cease to work.

* Around 7 years ago, I took on the responsibility of managing my friend-companion (of 20 years) care needs as they progressively increased to the level I was legally responsible for everything (POS, Fiduciary, SS Payee rep). While I won't go into all that was involved (it was immense), what I have learned most is how to be COMPASSIONATE.

SELF-CARE is essential. I thought I knew how to do that decades ago. When one is responsible for another's life - and it is a family member - we do what we have to do ... and we do the best we can at the time. And learn to 'be' okay with that. Guilt is a waste of energy and time.

It isn't 'new" found wisdom (from my experience) - It is a process of learning as we (I) go, being aware: observant, humble, open, vulnerable ... while setting boundaries. It is learning to forgive over and over again (I learned this earlier in my life), being patient balanced with knowing when to step back-regroup, and monitor the cycle of tired / renewal for another day.

I learned: I do not and will not tolerate abusive behavior or language. It is one thing to understand how and why it happens, it is quite another to subject myself to it emotionally. I learned when to step back - stop. For instance, my main first client would scream at me while driving her to a MD appt. If I made a wrong turn, she had a fit. That kind of behavior is unsafe for both of us, when I am driving. Just last year, when another client behaved this way when I was driving her somewhere, I never worked with her again, saying what was true: it is not safe for both of us.

I learned (fr a social worker) to write a contract of 'acceptable behavior" and have a client sign it (that she understood it). She changed for the better, even with dementia. She still had the wherewithal to realize that 1) she wanted me to keep working with her; and 2) if she didn't change, I would leave. This certainly isn't possible with everyone. What is possible is knowing your limits and boundaries.

AN IMPORTANT QUALITY:
1) Projecting how another feels - in their confused declining / dying brain to losing their independence, physical strength to being aware of the fears, frustrations and loneliness /aloneness another feels. This is showing compassion.
2) I innately relate(d) to clients as PEOPLE. Meaning, do not demean or talk down to a person regardless of their disabilities/decline: I relate to them as one human being relating to another. It is OKAY to say "I don't know, I'll check into that."
3) If you react / feel intimidated, work on yourself. This work may not be for you, now.

This 'work' has been an amazing journey over the last 12-15 years - somewhat unexpected ... although it has been a sacred calling so I was guided to it by entities / guides in the universe - and starting this in my 60s - when most people would be winding down from a career, I was really just getting started.

I'm certified in massage. Gentle touch is so important to an elder.
Many older people NEVER get touched other than a medical way. Making eye contact, holding their hand, smiling - can make someone's world - in that moment. Ane the moment is what we all have.

Lastly, remember that some day you will be old/er too and perhaps need a caregiver. I think of this often - how would I want to be treated? And then I show respect.

Gena / Touch Matters
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Take care of yourself first. Always.
Be sure that estate planning is in place. If you aren’t POA for your person, maybe reconsider the extent of your involvement in the day to day care. If you have no power you cannot make decisions to affect changes.
Ask for and get help. Being a caregiver to an elderly relative or incapacitated spouse can and will suck the life out of you if you try to go it alone. There are a multitude of options available for help. Take advantage of them. Don’t expect that other family members will “step up” if they haven’t already done so. You only frustrate yourself with that.
Draw reasonable boundaries and stick with them unless it’s a true emergency. If your person is in a care facility, you don’t need to go every day. Work constantly with staff, especially senior staff, to ensure your person gets what they deserve and need.
Find your grace every day through prayer, meditation, music or whatever way works for you. Remember that, like you, your person didn’t ask for this situation.
Take time for yourself. Know that others really do care.
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The only wisdom it's given me is when to keep my mouth shut, thoughts can't be heard, and knowing my own irritabilities.
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I've also learned that I will never promise not to put him in a nursing home. I've lost track of how many times I've had to call 911 because I can't get him up and he can't get himself up. I told him the last time he fell that was the last time. He thinks his "OH NO" will win. NOT! It's too dangerous for me and him.
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Llamalover47 Jan 7, 2024
DrosieD: That's right - it's too dangerous for you to risk 'life and limb' getting him up.
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Absolutely! I have the wisdom to never do any caregiving for anyone without medical & financial POA
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Don’t have false expectations of LO ever being pleased again , no matter what you do . They are mad that they got old . You can’t fix old.

DH and I will be burying the third of our parents this week that we were responsible for ( no sibling help ) . We are also seriously looking down the barrel of parent ( MIL ) number 4 soon .

Caregiving doesn’t get easier . But I am wiser . I know what to pack in my survival kit .
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CaringinVA Feb 8, 2024
"I know what to pack in my survival kit." A lot of wisdom in that one sentence, Way. I am learning what I need to move through this and continue to thrive in my own life. Most necessary.
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I realized that it is up to me to plan for my care in advance for what May or may not happen to me physically and mentally as I age. I have seen parents, relatives, friends just ignore the potential and leave it up to their kids to make those decisions for them leading to stress, ill health, and resentment toward that elderly person.

I don’t want to burden anyone with this so I am making decision as to where I will move next and working with an attorney for ways to simplify my finances. I would rather my loved ones be able to visit and spend time with me instead of having to fuss with living conditions and paying bills.
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I've posted other things I've learned.

1. I've learned that dealing with a broken brain isn't easy.
2. I've learned that things can change daily. Cherrish a good day, the bad one's are more frequent.
3. I've learned that he doesn't understand he's no longer normal, He doesn't understand that his living situation will not be in our own home at some point.
4. I've learned that financial situations change and will continue to change when he can no longer live at home. We were fortunate that we started our saving for our long term life. It's not always going to be the life you thought it would be. Reality isn't pleasant.
5. I've learned to stop feeling guilty when I report his changing brain. I've learned he'll always tell the doctor he's just fine, that he's going to say I'm always picking on him when I tell the doctor the truth. I have no reason to feel guilty, I didn't cause his problem.
6. I've learned that looking for assisted living, long term care, and memory care is difficult. Looking for the best you can find is going to be expensive.
7. I've learned the fire department loves it when I've dropped off cookies after I've had to call them to get him off the floor after a fall.
7. I've learned that we were fortunate we were smart enough to plan for our old ages.
8. I've learned that I'll be learning daily. That Alzheimer's is going to continue to be unpleasant. It's going to be difficult when I have to place him. I'm wondering at times how much stronger I must remain and know my limitations. I still haven't learned when I'm going to have to give in to his placement.
9. I've learned there is no survival guide for dealing with dementia. There's nothing written in stone to tell us how to get through this.
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Take care of yourself - "put your oxygen on first". Take the time to do good things for you. If you can't then it is time for a change - backing off, more help, a facility placement, whatever it takes.
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Yes, and now I understand the phrase "Ignorance is bliss".
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The last phase of life sort of sucks in various ways--ill health, poor finances (yes, even when having saved toward retirement doesn't insure you will have enough--example, housing costs skyrocketing)--and then you die.
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