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I’m currently taking care of my mother who has dementia. I have learned that rice is “bird food” and pasta looks like "snakes". (She used to love rice with sugar/milk & spaghetti was her favorite meal) That vegetables are “yucky” unless it is corn. That meat is nothing but “dead animals” and she isn’t eating a dead animal. That cookies (I laced with vanilla protein power) is a food group, that ice cream only comes in strawberry. I learned that swings are not only a playground item they are also mood swings. I have learned to dodge non-lethal flying objects that may come my way any given time.

I’ve learned that 8 hrs. of sleep and daily exercise is a privilege not a given. I’ve learned to hide negative emotion and act like a clown when I feel like screaming. I’ve learned selective hearing and to let the verbal abuse go in one ear and out the other. I’ve learned to smile when I feel like crying. I have learned a new level of patience and to find a tiny spark of light in the darkness. I’ve learned that as bad as things get, I have the love, respect and support of my children and that I did a wonderful job of raising my children alone and that they have a wonderful life.

I have also learned that under no circumstances will I EVER put my children through this. When the time comes and I’m unable to take care of myself, they are instructed to put me in a veteran’s home.

I have learned that to survive being a caregiver, you have to find the positive in the negative no matter how small it may be.

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I've learned to "break it down". Most of the time, I'm breaking it down for my MIL with dementia. BUT when I get overwhelmed with the paperwork, the medical jargon, the insurance lingo and all these random things. I learned to break this into smaller pieces so we both (MIL and myself) can understand them.
All the paperwork for the doctors, insurance, assited living facilities, lawyers, accountants. I learned to literally read over then break it down into manageable parts.
I've also learned the difference between white lies told to motivate and help and statements (lies or someone's perceived view) made to be malicious and hurtful.
I've learned that you really can answer "No" to everything, no matter the question and believe it while you're doing it.
I've learned that we all deal will loss in different ways and there are many different ways you can lose someone.
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that dementia caregiving is like driving with 4 flat tires. just slow it to a crawl and limp blindly onward a day at a time. dont be distacted by ignorant gawkers. your in control regardless of how absurd the ride gets. a caregiver has to have a spine, a loved ones life has been placed in your hands.
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I found humor in poop, farts, vomit, and any other bodily function.....
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and learn to be compassionate and patient. the elder is going to eventually die and you dont get a second chance to get it right.
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@ seemeride,
hell you almost have to create humor. it wont be lying around in abundance. its wry humor, a loved one is not going to be alive for much longer but honestly none of us have the guarantee of another day.
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No good deed goes unpunished is exactly what it means.
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I have learned how much I like saying, "You're wrong!". I've learned how much trouble it causes when I say that. I've learned to bite my tongue - most of the time. I've learned that, even with dementia, I would rather be married to my husband than to any other real-life man. (I'd marry Viggo Mortensen in a heartbeat, but he's not a real-life man.) (Nor has he proposed.)
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I learned that you catch more flies with honey than with vinegar. I learned that in caring for my dad AND in dealing with his business/financial stuff. I learned that I couldn't transmit my frustration onto someone else when I needed their help with something. I also learned that when it came to my dad's health the "give it to me straight, Dr." approach worked best instead of dancing around an issue because my dad was sitting right there. I learned to take any problem or issue straight to the source, my father. He was an intelligent, compassionate, and funny man and we could usually work through anything. I learned to say "I love you, Dad" and I learned how to care for him once his mind was gone. And even then when I'd say, "I love you, Dad" he'd reply with, "I love you too, sweetie."
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I've learned slowly that caregiving is what it is. No amount of worry will change what is.
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I've learned not to disrupt the schedule... If I do it just makes for a confusing tomorrow..
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You folks have learned a lot along this journey. I learned-too late to accept help when offered because people do stop offering.
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Sadly, learning my mother put her needs first all of her life at my expense and making the decision to finally put my needs before my mothers. This includes knowing I will never be a fulltime caregiver in her care. The pain of the past will never go away.
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The pain will not go away but I learned to take back my power and that I was at a place where her barbs and digs were not going to hurt me and realized I could take the power she had to hurt me away from her by telling myself she no longer had the power to hurt me.
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Amen to 195





















Amen to 195Austin. God answers prayers in ways we never expect.
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It deepened my faith in God. When I was overwhelmed and confused I prayed and sincerely felt guided. I was able to help my dad recuperate from an amputation and walk again at age 89. He lived 3 more years, they were happy years. Most fulfilling, I got what I prayed for, he knew he was loved.
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I learned that its true, God doesn't give you more then you can handle and that God does have a sense of humor.
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I have learned that even though my mother has a personality disorder (a mental illness), that once I treated all her drama as having Alzheimer's, I was able to get along with her and get her to take medicine, be more open to me about what she was going through. I learned I could communicate with her, gain her trust and we have had special moments together that were not there the entire time I was growing up.Alzheimer's is a horrible disease and this is my second time going through it with a parent. Dad was very docile and easy to handle when he had it. I wish both my parents did have to have this disease. Blessings to all of you and all that you do for your loved ones.
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I have learned to smile though I feel like yelling. I have learned that it always falls on one person to sacrifice their life for an elderly parent. I have learned how selfish my sibling and her kids are. I have learned that this is all for nothing other than making others' lives better. There is no reward coming my way for this crap. There is nothing but stress and over eating. There is no satisfaction that I did my duty. There is no big treat about getting out to an exercise class and then going home to what amounts to a walking carcas. Keeping myself healthy is for what? So I can do this crap for another year?
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I have also learned that I will never expect this from my own kids.
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I've learned you can only help, as much as the person your caring for will let you. Do the very best you can, but don't let them break you down, to where your ailing; and at some point if or when you have too..detach, con't trying but when it time to let go you'll know.... Meaning "A Place For Mom".
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@ sharyn,
great point. i s'pose many of us thought an elder was just being difficult until the dx of dementia and our subsequent self education on the subject. you can become pretty patient after visualizing a brain with a spreading patch of dead zone in it. as it becomes late stage your angst turns to compassion. you still lose your marbles from it but you dont take it out on the patient.
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I have learned that getting bizarre answers or comments from my hard of hearing charge can make me laugh.... not where she can see me, but I put our strange conversations in my journal, go back and read them on the bad days....
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I have learned that my mother brought up at least one very strong daughter. This is the most challenging job of my life in terms of patience. I have learned that when siblings are not cooperative and cause additional stress in an already stressful situation that I can withstand it, quite well, thank you very much. The more that I am scrutinized and ridiculed and lied about I become stronger yet. The most important thing is moms happiness, comfort and welfare. I have learned if she has those things that is what is most important. Siblings be damned.
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It is the hardest job I have ever held....it can wear you down that is for sure...be sure to take care of yourself as well I need to remember that as well.....
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I have learned that providing the the badly needed assistance to the loved one who deserves it is truly rewarding, mainly when the caregiving provided yields tangible results in terms of good upkeep. That is human, and dignified. Wouldn't one feel complacent, then?
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