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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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Check with the Area of Aging and Disabilities in your city. They will have resources for groups on caregiving and coping. They were very helpful with me and might have some respite opportunities for you. God bless
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Hi Rusty, I didn't even know they had a Chicken Soup book for caregivers. Thanks for the info. I'm sorry about your mom. HUGS!!! to you.
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Chicken Soup for the care givers soul is a good one to read also. My mom just lost her battle last week and I'm lost and exhausted. And OH, do I miss her!!!!
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Thank you soooo much...I will check into getting this book....at this point anything will help. Lately, Mom has become her 'normal' self...I don't know how long it will last, but I'm enjoying every minute. Would love to find a support group in my area...but don't know how to go about doing this. Thank you again for your help.
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I would like to recommend the book, "Loving Someone Who Has Dementia" by Pauline Boss. It isn't a practical how-to guide for day-to-day caring, but it addresses the emotional issues of losing a loved one one memory at a time, bit by bit. She talks about the ambiguous loss of having a loved one physically present but also "not there". She really gets what we go through. Reading it is a way to know you are not alone, and to validate your feelings, and perhaps to see some different ways to cope.

If you do decide to read it, I'd be interested if you find it useful, too.
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I can totally relate to the numb feelings. I shut down when my Mom had a breakdown and was placed in memory care because I had to be strong for my mom and sis and family. I have been the "mom" to my mom or a decade, covering for her, telling her we all have memory problems, etc. I handled her finances, shopping, etc and tried to talk to her about moving to assisted living. She hung up on me and told me to never bring it up again. I finally did an intervention with her doc and got her an appt with neurologist and before the appt she called police claiming she had been robbed by my 12 yr old niece . There was no going back, her hallucinations were out of control and she was in danger. She was admitted to geriatric psych (against her will) and then to memory care. I tell you I don't feel a thing and haven't for years. I look upon her as a kindly, frail old lady who accuses me of stealing from her and holding her hostage. She has spit on me and cussed me and I have cried a little at a time, mainly in the privacy of my car on the way to and from her memory care center. You have heard AD referred to as the "long goodbye". I have grieved a little every step of the way on this horrible downhill slide. I have put on weight and lost friends and my job(mom would call me ten times in an hour saying she needed me to bring her lunch). My life has been taking care of my mom and I have been blessed to do so, however I wish I had forced her to go to AL and hadn't tried to do it all myself. Grieve at your own pace and I agree 100% take care of yourself at all costs. Bless you!!! Hugs!!!
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Anhedonia is a Greek word which means emotional numbness, loss of joy, etc. There are many articles on it if you do a Google search. Good Luck
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i would suggest a couple of things from my caregiving experience. do not lie to the patient for the sake of quelling disagreement. they will eventually realize that your patronizing them and you will lose trust. you can go along with them and downplay things and still stop short of lying. also let them remain in control. they are very worldly wise old timers and as such dont want to be treated like kids.. these seem like small things but they can be the difference between trust and combativeness.. if a late stage dementia patient wholeheartedly trusts you , congratulations, its trust that youve earned..
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Boy, in my short experience with this insidious disease that has stolen my husband, I can relate to so much of what is written here. It helps to verbalize our emotions whether good or bad. It is so sad that so many of you have siblings who are not willing to step up to the plate. My husband is 17 years older than I am. His sons are several states away and haven't had much contact with their Dad for several years. I did call the one son who at least did call once in a while to tell him the latest turn of events which happened suddenly on Christmas Day. Although he did call me, he didn't offer anything which I didn't expect. I am alone here in a new area (just moved here 9 months ago) with no family and no real friends to speak of. I know people from church who offer prayers and a listening ear, but they can't take this on for me. I know that. I am glad there are places like this to vent and share and hopefully learn something which will ease my fear. Having spent many years in the business world, I am used to dealing with logic and reason, analyzing a situation, weighing the possibilities and implementing the right course of action. Somehow none of that seems to apply here. I am in contact with agencies which offer help, but it's so hard waiting for answers, not knowing what to do next. My screen name says it all..."Scared".
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I am so very sorry for your loss. Thank you for sharing your experience, and reminding me to look beyond the behaviors the dementia is causing. I do keep telling myself things could be so much worse, and I know for others, life is. We went through this with my grandmother, 18 years ago, and in a nursing home when she passed; but never alone for the last 2 weeks of her life, and my mom and I were with her at the end. Also with my father, who passed away at home after a long illness and being bedridden for 2 1/2 years. I have the background to deal with the situation, but with mom, my soul connection, the feelings are magnified, and this time, I'm pretty much on my own caring for her. My 2 brothers and much of the family, for various reasons, choose not to help. But I have wonderful, supportive friends both in my life and now, here, on this website. Thank you all.
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I'm so sorry Danna..it's a really hard thing to understand but consider what it feels like to them. It's pretty scary to wake up and not know where you are? and sometimes not knowing who's there with them. Mom also had Lewy Body Dementia and in the last 2 months of my caring for her...I would have to announce who everyone was who was in the living room before she would even come in and sit down. She woke up a few times with horrific nightmare or night scares I would call them. Wondering around the house looking for a little girl with a scarred face. I hate what dementia does to them. It takes away their security, familiarity, and memory...and sends out mixed signals to the brain. Signals that make them mad and agitated when they feel pain...to which they will lash out at the one that's the closest to them...you.
I was like you...frustrated and didn't want to come home when I finally got out..but finally after much investigation on my part and education about the disease. I could finally disconnect my feelings as her daughter and truly care for her the way she deserved. I did stick it out...my mom passed away January 9th. I was at her bedside kissing and loving on her until she gave her last breath...and I have no regrets. As I know you will too. God bless
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I'm very sorry for your loss. I understand it is the dementia talking and not my mom, but I think I don't want to accept it entirely. But I know I will have to. I know she is fearful at times. We lost my sister about 8 years ago, and I know she is scared I won't come home sometime. She has a lot of time to think and worry about things. There is no question that I will stick it out; she's my mom and I love her. It is just overwhelming at times, as we all know. And I am grateful for this site and the caring people who write and share experiences.
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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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Thank you for your reply. I agree that written notes are the way to go. I often leave an entire schedule-when to take which meds, what channel to put on for favorite tv shows, what to eat, where I am, when I'll be home, phone numbers, etc. They are helpful most times, but not always. And, I really do think, even though she has moderate dementia, she still knows how to maintain some control through guilt trips. The secret is for me to figure out how not to get hooked. Yes, a daily learning experience it is, to say the least. Your posts are always very practical and helpful-many thanks!
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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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Hadenough, thank you so much for posting what you did. I am caring for 2 demented people. Fun huh? DH (darling husband) wants to argue and wants me to prove stuff. Wild goose chases. It is so good to hear from the forum.
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Danna, as I read your comments, it reminded me so much of me to. I think I'm handling it well, even patted myself on the back, then ... Wham! One comment from father, and I lose my temper. I've been losing my temper lately...since father became bedridden. I have to relearn controlling it. I think, for myself, because I've always had a terrible temper as a child and finally was able to control it in my late teens. Now, the stress is so much, I have problem controlling it. I think, Danna, it's when WE are feeling down or sad or even Happy - that One specific comment from the parent will set us off....I noticed father doesn't like it when I'm happy. He will say hurtful words to me to bring me down. Yep, we're not alone when it comes to this! HUGS to you!!
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OMG, how true! That was my thought, exactly: At 50, do I really have to account for every minute of my day? But we just had a long talk, and I think, for the moment, she understands that I am overwhelmed. I know it's the dementia talking, plus she's always been a worrier (wonder where I get it from?!). So, we move on with a new day. It is already looking brighter, thanks to caring friends. I hope your day is a good one. Thank you again!
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Hi everyone, Danna the exact same thing happened to me yesterday. I was gone for about an hour- had told my Mother where I was going and when I would be back - and as soon as I walk in the door "Where were you?" So frustrating at times. I feel so trapped and anxiety and depression are always hanging around. Everyday is not like this and I must remember that "This too shall pass" but this is not how I thought I would be spending my fifties.
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I'm struggling, this morning, with how to pull myself together to be there for my mom. A simple remark from her, yesterday, set me off when I came home from work (my few hours a week that I get out). "Where were you?" She knew where I was, and even had had a visit from my brother while I was away. Instead of being able to brush it off as her need to control things, I let that comment get to me, and it has resulted in a really bad night's sleep and inability to even be around her this morning. I know I'm tired and overwhelmed. It's strange how you can go along, feeling like you are doing pretty well, and then one little thing can happen to throw you into a downward spiral. I understand it is the dementia speaking, but sometimes it is so hard to remember that and to not take a hurtful comment to heart. I think I just needed to vent, and to anyone who takes the time to read my message, I thank you. I know we are all experiencing similar feelings and issues; it helps to know I'm not alone.
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Thanks, mzdaisy (and all here). I can see the "fall" thing or something happening similar down the pike what with the stubbornness and refusal to change her "decor" a bit around her house. We've all told her she has too much furniture, some even blocking doorways. Every morning I go over, it's like a funeral home, dark with curtains still mostly closed, screen door always locked, heat turned up way too high, TV full blast, and we're talking 10:30 a.m. (But she is fully dressed, thank God for that one, and ready to hop into the car). She finally lets me in after I pound awhile on the door. I walk in and as I go, I open curtains, turn the kitchen light on, place her pills on the counter, etc. There will usually be a throw rug caught by one of her doors that I nearly trip on (and yes, I have yanked up and thrown out a few of these, which she apparently hasn't noticed). I have just quit lecturing, does no good. I keep batteries in a flashlight near her bed and make sure before I leave her daily that it works, ditto all the lamps and plenty of replacement bulbs. Her house is 5 minutes away. She used to call me much more often during the evening but not so much lately. Now I realize she has problems dialing my number (there's a 0 in it, and that seems to throw her now; she thinks the operator will answer). Got a phone with bigger brighter numbers but I know there's a vision deterioration going on that she totally denies and won't agree to go back to the ophthalmologist for. On it goes. I figure one of these mornings, I'll peak through a window and find her on the floor. Just hoping that won't happen anytime soon.
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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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hadenough. How true. My sis is one who never helped, and she too says, I can't do what you do. Unfortunately she passed her bad ways onto her kids. Only 2 of 5 (all married with families, so no excuse) have come to see her. Once at that. My niece told her mom she couldn't "take" seeing Gram like that. Ughhh! My daughter, who is the youngest of all the grandchildren (33), has 3 children who all know and love my mom. They all have been to the nursing home so many times I can't even count. Plus this is the second time my daugher has to see the grandma she loves go through this. Her other grandma, (on her dad's side), lived through this dementia for 5 years. It wasn't the dementia that killed her, it was cancer of the liver. Horrible, horrible way to die. Her other grandma was 92 (88 when the dementia started), my mom is 95 and this just hit her 3 months ago, and she is quickly declining. Kudos for your niece. It may be hard for them to see that Granny isn't the same, but keep encouraging her to show Granny all the love she can while she is still with us. That's what I do, and my mom lights up when she sees them. They are all going to be better adults, because they will know what it is to really love the elderly. Hugs to you.
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Oh Nanieine, sorry about your day. Thank you for your loving response with your Mother during this very difficult phase. It is so heartbreaking and at the same time natural that our elders get physically old and mentally old. Tomorrow my niece is coming to see her Granny and she has such a hard time that Granny is just not there mentally anymore. So not only am I the caregiver but also have to give comfort to family members who are grieving the loss of their Grams and Mom. Trust me I pray for patience multiple times a day. When my sibs say they don't know how I can do this I just bite my tongue. We do this because it is the right thing to do. When I am no longer able to give my Mother quality care it will be time for a nursing home also. I feel your pain but we do not do our parents or parent any favors if physically and/or mentally we can no longer do the job. Hugs to all and prayers out for everyone.
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StChaos and all "I've begun my grieving process." I think this is an often forgotten, and very important part of caregiving. The care receiver is changing, and not for the better. There is grieving for what has been lost, in terms of the relationship often, in terms of the care receiver's abilities, for pain and various emotional and physical trials in their life, for the losses in the caregiver's life due to the extra work, and also anticipatory grieving for the time when the loved one will not be here anymore. Grief is a normal part of life, and can be lost in the demands of caregiving. Yet, to maintain your health, it needs to happen. Failure to grieve can lead to physical and emotional problems, strained relationships, and so on. It is not pleasant to feel the pain, but a necessary part of the adustment that needs to be made as your loved one declines. I know it may seem impossible to find time for you, but it is so important for several reasons, and one of them is to process your feelings, experience your grief. (((((((hugs)))))) to all. Joan
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St;Chaos & Kukla77: It's the dementia doing all of this to their brains. My dear mom was diagnosed 3 months ago. Suddenly all of a sudden, boom! It's Lewy Body Dementia. Paranoia, hallucenations, etc. Today I brought her home for a visit. Last 2 times I did this, she was great. Told me if she could do this at least once a week she could cope at the NH. Kukla77, I too sacrificed time with my husband and daughter & grandchildren.,plus had a breakdown, so I had to put her in the NH. She needs full asistance, as this disease causes her to be fine one minute, and totally not the next. At home today she was so relaxed. She even asked if I wanted to take her back around 3pm. I told her we could wait until 4, then my husband and I would take her together so she could get ready for dinner. Then we were going to go out to get a bite. SHe was totally agreeable. Then, all of a sudden something snapped (I say that "Lewy" came back. She was walking w/ her walker and I said we probably should get ready to go back. She started running away from me like a little kid, yelling and crying NO Please don't take me back. I want to stay, please no!! I felt so bad, I had her sit in her favorite chair and told her not to worry. I hoped as time passed she come back to her old self, but she didn''t. I finally broke down in tears, (I know you're not suppose to do this, but I couldn't help it), I could feel my emotions getting out of control and I told her I didn't want to take her back, but if I don't get control of myself they're going to take me back to the hospital. She finally agreed to go back. I thought all was well when I left her. It was almost time for dinner & she was sitting by her friend Margie. My husband & I had dinner and he said he was happy to see that I didn't let mom manipulate me. I explained she wasn't manipulating, it's the dementia. As soon as we got home, I got a call from the nursing home. She was hysterical asking why I didn't come and get her, and begged me to come. I can only be thankful the NH is only 5 minutes from my house. WHen I got there, she had the demential "glassy eye look". She was sitting up in bed and hugged me so hard. She said she thought she was never going to see me again. This horrible, horrible disease! It causes my poor mom so much fear. I calmed her down, and by the time I left she was ready to fall alseep. I told her I would call her when I got home. When she anwered the phone I could tell she was getting very sleepy so I told her good nite & I'd see her tomorrow. This is awful. And, Hadenough, you are so right. The book I bought said you shouldn't try to reason with them because their brains won't let them reason. How true. Like you said one minute they are the mom you know, then their brain doesn't work correctly. So we're the ones who have to work around this. This site has really helped me. Just to tell you all what happened today feels like a relief! Thanks to all of you!!
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Cindyoh...I'm was in the same situation as you are with your mom. Have a lot of sibs that are not around. Took on the caregiving years ago. Making sure mom was well stocked, cleaned apartment, took her to doctor appt., stores, and anything else her little heart desired. She started showing signs of dementia last year. It was fine at first but slowly changed into the blame shifts, losing things and blaming me or my brothers of playing tricks on her ( they both live almost 600 miles away), Tried to convince her that no one was coming into her apartment and sleeping or making messes for her to clean up. She would start forgetting her meds. I would have to start coming 2 to 3 times a day. She was so messed up on her days and nights she would wear the same thing for 2 or 3 days. She fell and I found her. Spent 4 days in the hospital and after many tests and cat scans. The doctors informed me of her progressive dementia and that she cannot live alone any longer. She is now home with me. It's been a journey this last 5 months that she has been here, many ups and downs. But I have come to terms with her sickness. I now know that what's going on with her is not her...its the disease. She night walks even though she has two arthritic knees and she sundowns. I don't try and reason with her at all. I agree or let it go...and kiss her on the cheek everynight and tell her I love her. All I want for her at this point is the best I can give her for what ever time she has left with us. Good Luck and God Bless.
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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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"Anyone else find themselves emotionally numb coping with parent's dementia/Alzheimers?"

Absolutely. And my lack of tact gets me in all kinds of trouble, too.
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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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