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When I first found out about my mom's dementia, my emotions just sort of shut down. Then I took on a hefty role as caretaker and I never had a chance to grieve. I felt it was selfish of me to do so. People kept telling me I needed to take care of myself in order to care for others but I found it hard to know where to start.
I found that sharing my experiences on this forum and getting information allowed me to experience my emotions in a healthy way. I didn't feel alone. I've begun my grieving process. And in doing so, it makes me value the time I spend with my mother more. So I wanted to say a big THANK YOU to all those who contribute and respond. You guys really help in ways you can never imagine!

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I'm 87 and haven't experienced any of the painful dilemmas i read about in this forum. But I read faithfully to prepare myself for whatever comes my way. It is a great and valuable forum. Thanks, everyone!
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I have been my Mothers caregiver for 1 1/2 years now and it is ever changing with her mentation. Some days she is almost the Mother that I used to know and others she is just a selfish, scheming toddler. Very hard to handle since my Mother has always been one of my heros in life. This morning as I was driving her to the bank she made a few hurtful comments. I know trying to reason with her is out of the question because I have tried that route. Once an idea is planted in a demented mind it is their reality. So I keep my mouth shut and remember that parts of her brain are now covered with plaque and are not working correctly. I am getting better at disengaging my emotions when I need to. If that is numb I am OK with that. One really helpful solution I found on this forum was not to engage in the wild goose chases that our loved ones with dementia try and put us thru. Boundaries, boundaries, boundaries. At first I would try and ease my Mothers mind by showing her paperwork, calling the bank ect..... all of that stuff. I found that it was just frustrating to me and did not change her mind anyway for more than a few minutes. I also insist on getting a couple of day a month away. My sibs were not too keen on this at first but I think when they saw it really helped me they were willing to help out more. Still not a lot of help from the sibs but because of this specific forum I have "grown a spine" and ask for what I need. Does not always happen but at least once in a while it does. Hugs to all and keep the faith.
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This forum is a GODSEND...Mom is 99 and though we've no official diagnosis, we know it's dementia...I am her primary caregiver even tho she lives in an assisted living facility. I was there 5-6 days a week if she needed something...putting my husband and family on the back burner...Dad passed in 2002 and I've been there every since..We were always close ..taking her on our vacations, family dinners wherever...normal family stuff. Two years ago she accused me of stealing the house we bought from her...it took me all day at courthouse to find the legal papers to show her...of course (that's not her signature)....then accusations that I wrote checks to other family members and signed her name...it hurts so bad and to think I've sacrificed time with my family to cater to her every wish and whim...the latest has been verbal abuse where she accused me of going to her room and rummaging through her drawers "What do you want from me, you alreadt have everything of mine!"...Needless to say, I DID NOT go to her room...but she's been experiencing things missing for the past 3-4 years....she says it's the workers and when we find the things she says were missing she says..."Oh, they brought them back!"....things from 'underwear to back scratches'....it's disheartning to see someone you love change personalities...I've kept my distance for my own sanity...sought help from therapists...and have now turned to prayer...I tend to Mom now realizing she is NOT the same woman I've loved but even though she needs me to help her....I need her in my life MORE...so I'm there for her....and she doesn't remember the accusations and things are at least for now, civil...I keep things light and we just go day by day....I've written several letters to her doctor explaining her hallucinations, accusations, verbal abuse and still no official diagnosis...just more meds...hang in there ....you are not alone
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This site makes me feel so not alone. Thank you all!! This last Thursday, my mom and I were out eating and my mom told me she had a lovely weekend with me. I said thanks and smiled inside. We had only gone out to eat. SHe asked if we were in Atlantic City and I said not anymore, that we were on the way home and so close now that she could take the left overs from the meal home with her for later. When it came time to pay, she went looking for some money and I told her that I had won in Atlantic City and I would pay for this one!!! You do what you have to do.
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Dana, my husband had Lewy Body Dementia which is characterized by highly fluctuating cognitive and other abilities. And in some ways I have to say that the "bad" days were emotionally easier to deal with than the "good" days. When he had a long string of good days it was really easy for me to get into the habit of expecting good behavior and getting annoyed when he'd forget something or ask "dumb" questions. Then I'd have to remind myself, "wait a minute. He has dementia. He can't help this." When he had a series of bad days I didn't have to remind myself -- it was all too clear that his behavior was dementia-driven.

I think that is often what early dementia is like -- it is hard for the caregiver to "remember" that the loved one is not working with a fully functioning brain, and therefore to take things personally or have unreasonable expectations.

Cut yourself some slack. This is an extraordinary job, and it is all on-the-job training!

On a practical note, I learned to always leave a note for my husband (when he was still well enough that I could leave him for brief periods.) "At Target. Back at 3:30" Even if he seemed to understand when I told him, I found it was necessary to write it down, too. My mother (92, early dementia) just moved in with my sister and she is putting up a white board for the same purpose. "At bowling league with Bob. Rita is coming over. See you at noon." Don't count on your mother remembering anything any more. And even if she is asking the question for control needs, if you can just smile and say, "right were the white board says I would be -- at work" it might relieve some pressure. A white board or written notes are the way to go!
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StChaos, I agree with you so much on how helpful this site is. I became suicidal in June because I couldn't handle caring for 2 bedridden parents forever. I've been secondary caregiver (father being primary) for mom 23 years (last year.) Then father had a stroke last year, and now I do both. With 7 siblings, only 1 sis stepped up to help "babysit" Mon-Friday while I work. I came on this site in June and posted for help. And I got it. I've learned to accept a lot of things (siblings have a right NOT to help with the parents, etc...). I have been on this site daily since then. Learning as much as I can thru the experiences of everyone who posts.

So, StChaos, when you came on and thanked those and this site for helping you, I totally agree with you! This is a give-and-take site. We all learn from one another - validates what we are going through, and what we will be eventually be going through. How we can handle certain situations. And I will be forever grateful that my reaction to father's beginning Poopy Stage is NORMAL!! I thought I must have had some kind of childhood trauma because when his poop is NOT in the pampers where it should be - I literally froze and wanted to walk out of their lives. Cleaned the mess and then did my crying fit afterwards. Stuff like this is soooo helpful for those of us entering each New Stage of the Dementia disease. We thank you also!
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Hadenough, you struck a nerve with me. I was at first always trying to show mom her paperwork what with her sudden and weird idea that she has no money, where's my keys, can't find my billfold; she would drive me nuts with things like this. I'd get angry and frustrated, etc., terrible cycle that I finally learned how to stop and set boundaries. Mom still lives in her house alone, and I'm managing so far, but yes, would be so good of my brother or sister to pitch in and try to entertain her once in awhile, as I work full time evenings and find I have to run her around to try to keep her happy 7 days a week. One good thing is mom still can do her hair appointment and church on Sundays, so I run her weekly to those and can pop into her house and do a bit of cleaning and picking up that way or a bit of yard work, though I solved that one with one of her neighbors. I see now that I need to work around her and or behind her back, which I hate, to make sure things are okay at her house, that she has food in her fridge and cupboard, and I'll certainly line some people and activities up for both of us as time goes on. Mom DOES have money, at least, and she will certainly be paying for the help she needs as we go on. Thank God, years ago she did make me DPOA. But I sure never anticipated the stubbornness, ugly accusations, and the lack of appreciation from my mom. Anyway, I sure do appreciate you guys, this forum has been very helpful to me.
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Danna: Time will help you realize it's the dementia. My mom would always want to know where I was going and when was I coming home. I felt like I was a teenager, but then realized the reason she was asking was not because of being nosey, but she was beginning the get scared at home without me. Earlier I mentioned she got diagnosed with Lewy Body Dementia in October. Well my dear mom passed away on January 1, 2013. Had I known about this site at least a year or so ago, I probably wouldn't have been as affected as I was by her dementia. Sometimes she would say such hurtful things to me, then would hug me after I would cry uncontrollably. I was going through menopause on top of it, so I was taking everything so personally. She would feel so bad later, then tell me how much she loved me and how she wanted me to be "well" because if anything happened to me she didn't know what she would do. None of it was selfish, it was just part of the dementia stuff. I'm just glad I stuck it out, and did all I could, because I do miss her tremendously. Hang in there, and keep up with this site. These folks are such a comfort and encouragement!!
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It is typical of people suffering from dementia to think people are stealing from them and they also move things around to hide them from people "stealing their things" and then forget they did it. It's difficult to not want to prove things but they don't even know what the proof (i.e. court documents) really mean. It's just part of the disease. It is very much a challenging ordeal and I commend all who are doing it for family members. I did it PT for a lovely woman (when not in dementia mode) and we became close before she went into a full care facility. There are options to doing it all yourself and you are being kind to her and to you when you are rested!
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Squint, I just want to say, "Good for you!", for being on this forum and educating yourself. I wish my mother had even a fraction of your attitude. I am doubly impressed that someone from your generation is actively using a computer, much less searching out information on it. I know a few 80+ year olds that can use a computer for email, but that is about the extent of it. Perhaps with your active mind, you will never develop or experience dementia/Alzheimer's.
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