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I honestly cannot think of just "one'" thing & I don't want to go on & on. I'm guilty as charged with my "long" stories, sorry, but this forum has helped me, thank you all! If I knew then what I know now I might have made different choices, just saying! God Bless
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Reply to Blessings4Ever
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Having the joy sucked out of my life
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Reply to jellybean18095
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So sorry for you, Rafaela & your husband. Both of you are young & you are to be commended for going on this journey with him. Educate yourself on his diagnosis, that will help you understand his behavior. You will see many sad changes with frontal temporal. Look into day programs for him, some offer activities & trips that you can be a part of if you want This will be a new normal for you, so, take care of you as well to be a better caregiver to him. Don't shy away from support & "good" help if & when needed. It will be a roller coaster ride but your care & love will prevail. Stay strong & focused for you both. God Bless
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Reply to Blessings4Ever
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Rafaela, just so Sad! Like Jesse said, we just never know what tomorrow brings! Hopefully his daughter helps out now and then, so you can get a break now and then! My heart goes out to you! Take care!
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Reply to staceyb
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My heart goes out to you, Rafaela. We never know what life will bring, but we never expect anything like this.
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Reply to JessieBelle
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Freedom is a big one, but most of all I just miss my husband. We've been married for twelve years and several years ago, he was diagnosed with fronto-temporal dementia. Our whole marriage, I'd looked forward to our "honeymoon period," after his daughter had grown up and we could could finally stop dealing with her very nasty mother. Instead, despite his superb health, physical fitness and intelligence, this horrible disease has taken over the rest of our lives together. He laughs at the tv constantly, even during shows about the Holocaust. He can't communicate at all, and 99% of the time does not understand what I say to him. Now we are like mother and child. My only hope now is to be able to keep him at home until the end. The progression of this disease is impossible to predict, so I'm starting to feel like I'm living my life in limbo. I'll be 50 in a month, and he just turned 67.
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RosemarySpied can't agree more with you regarding agency people, the worse when it comes to dependability. When and if they were able to find me someone, another beef, all would seem fine, then poof, just gone, "missing in action" the agency would say. With no notice not ever able to send a back up person. One agency person I had was good, but started to take advantage, would oversleep or come late, rushing my brother. I know their pay is lousy, so I tip. My brother is easy, more compliant with care these days, ambulatory, just assistance with a shower and dressing, then off to his day program, which he loves. Yet no agency can find help for him, so I'm it, his sister. Just sad and wrong! It's almost like "they" are forcing me into placing him, they have said it, "Think about placing." I'm sorry I've asked for help, they stress me, pee me off! They make promises, charge money, have rules, can't or don't deliver! I need to let the idea of "help" go.
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Reply to Blessings4Ever
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just read sherunner's comment. What helps us is my making a note with day, month, date & year at the top (large print) list of day's activities & time, if any. My husband keeps the paper in his shirt pocket and looks at it often. I hope this is useful. hugs & prayers
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Reply to Sunflower17
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Lack of freedom, social isolation, finding out how little siblings and other relatives care, no empathy, no appreciation for such a huge sacrifice caregiving is...
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Reply to katiekay
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"Freedom's just another word for nothing left to lose" is from Janis Joplin's "Me and Bobby McG."
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Reply to RosemarySpied
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Isolation from friends and church. Have to hire a sitter before I can leave the house ($18 an hour), and have to plan ahead for that. Make plans and then the caregiver doesn't show up. With sitters who are friends, something comes up and they have to cancel. (At least they let me know!) With paid caregivers, they just don't show. No call. No explanation. Makes it difficult to stay in touch with friends when we have to keep cancelling plans. My husband and I very seldom get to go anywhere together because we tag team staying at home with Mom. Very isolating.

Or Mom is sick and I can't leave her.
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Reply to RosemarySpied
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'What have we got on today?' 'What's next?' 'Are we expecting anyone today?' x 100. Every day.
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Reply to sherunner
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No sleep
Driving 50 miles round trip every day
No days off
Not knowing what to say when told "maybe your brother can stop by more often"

I am thankful that my dad is still in relatively good health though, and I really shouldn't be complaining.
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Reply to Syracuse915
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My husband"s needs increase every day and his ability to be a part of anything decreases. Our life has narrowed to me doing everything and having almost no contact with friends & family. I try yo remember that if he were any where else, he would still fill my heart & mind. And I so appreciate all the caregivers comments. Thank you all.
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Reply to Sunflower17
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The lack of respect caregivers get from society, including family and friends, because they think caregiving is not a "real job"
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Reply to careisgiving
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For me, it is hard to deal with the anger directed at family by the person being cared for. We all try to let it roll off our backs, but it is hard some days when nothing we do is right or good enough.
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Reply to HannahLeigh
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I can identify so well with the comments by Queenb75 & Jessiebelle. Even with the progression of this d--- disease my brother's old self is so "still there" especially with me, he displays an "it's all about me" attitude. I get this, he's bitter, forever angry about everything, but his "old self" makes the caregiving so much more challenging & depleting. I know someone who is watching his mom "slip away" from an illness, no memories impairments at all, 85, she has a kind & sweet, sad way now. Mind you, when well, she was the opposite, tough to break thru to. I always hoped & wanted a normal relationship with my brother. I find myself thinking of the past more these days, how I always had to give & bend more, now I remind myself to forget & forgive more. The day of his ALZ diagnosis we shared a "real hug & tears." I remember our family counselor, who had a "right on" way about her, saying to me, "Cherish that, it may be the last." Initially I was perplexed by her comment, but out of respect said nothing, I get it now. Even at this "later stage" I hear, "Get out my way," "Give me that," or "You're not helping." I know my when will come & I wonder what I will do & how I will cope with the loss of him, being in his corner. Some say to me, "He's gone now." I don't see that yet, it saddens me. Caregivers sometimes say, "What the h--- happened?" Humor plus a respite please! Hang in caregivers, a job well done!💐
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Reply to Blessings4Ever
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No time for myself!!!!!!!!!!!!
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Reply to AnnabelleB
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Yeah, people with family and and people who work outside the home too. In one way it adds to the stress because you have to juggle your job and your caregiving responsibilities, but it also keeps one foot in the outside world so your life isn't totally consumed.
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Reply to cwillie
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Today I figured out the thing that bothers me the most. It is living someone else's life. I understand how people get lost in caregiving. You live someone else's life for a few years and lose track of your own. It's like going down a long dead-end street and then having to figure out how to get back to your own life. That life is probably gone, so you have to reinvent. I envy the people who have family that help them stay oriented in their own lives.
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Reply to JessieBelle
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The extreme self centeredness and often times greedy behavior
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Reply to QueenB75
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(((((hugs)))))) to the underappreciated. I know what it feels like and it is ironic.
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Reply to golden23
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Patticake said:

".... Mom and I do not speak much. I feel that she resents that I am her caregiver. Her happiest time of day is when my brother calls and asks for money. I hear her talking with my husband and she is so chipper. I come downstairs and ... nothing. I've been a good a faithful daughter. I thought it would be a special time for us. Now I dread it and feel guilty. Mom is easy to care for. "

This, so much, this. My mother spends most of her time giving my angry stares and refusing to speak to me. But when the dog walks into the room she cheerfully converses with him. "Oh, Riley, there you are. How was your day? etc" Her caregivers and everyone she meets tell me what a sweet lady my mother is. But she is never that person for me. And, yes, I also have a brother who only calls when he needs money and boy does she light up when he calls.

I do believe that she resents me for taking care of her. Ironic, isn't it?
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Reply to mom2mom
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Patticake - I want you to know that we all are listening here. It is very sad that you want so much to be a good daughter and that you still feel so unappreciated. I can relate in a way, because I tried to take care of my sister I the months before she died but she really didn't want me around. I wanted to have a special experience of closeness and connection with her but it just didn't happen, and I was powerless to make it happen. It is very sad. Illness does not bring out the best in most people, even if it's not dementia. Sometimes people becomes so focused on their own struggles that they don't consider the effect they are having on those closest to them, or what they are going to leave behind when they die. I know that was the case with my sister, and maybe it is with your mother as well. But I know how sad you must feel not only now but in anticipation of how you'll feel when she is gone. Many of us hope for something from the experience of caregiving, if only the sense of connection with the loved one, and the satisfaction of having made a difference for them, and sometimes even that is denied. I don't blame you for feeling sad.
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Reply to CarlaCB
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I cry a lot!!!!Married for 47 years.I am the 24/7 caregiver for my husband.Started in 2009 .He was on vent in hospital for 7 days. When we brought him home Dementia started.This last year I cannot leave him alone. He is in diapers .He has sundowners.He has bouts of anger and meanness.I have a friend who sits with him sometimes once a week.I pay her .I have chi!dren who sit with him so I can go out to dinner with friends.It is a very frustrating life.I had to retire.I am 67 and wish I could really enjoy my retirement.
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Reply to darby57
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The hardest thing for me is missing the relationship I use to have with my mom. I sometimes wonder if that relationship was fake and this is real. Mom and I do not speak much. I feel that she resents that I am her caregiver. Her happiest time of day is when my brother calls and asks for money. I hear her talking with my husband and she is so chipper. I come downstairs and ... nothing. I've been a good a faithful daughter. I thought it would be a special time for us. Now I dread it and feel guilty. Mom is easy to care for. Please, know my mom is a wonderful, sweet woman. She is loved by everyone that knows her. It is the dementia I am seeing and it is sad. I blame myself that I am not doing a better job. When mom passes away I'd like to feel there was nothing I could have done better. I do not think that will be the case. I'm not sure who I am speaking to just needed to speak.
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Reply to Patticake2
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The hardest thing is being here, being the caregiver.
The only thing that works lately is denial.
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Reply to Sendhelp
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My Mother thought pooping was"nasty" and not lady like so after she broke her neck,I had to help her train her body to go more normally and I took her to the john every morning whether she needed to go or not and covered her with her blanket,got her oxygen on her,got her a water or gingerale, and put her fan on her,then ran outside and got the newspaper for her and I tried to make her as comfortable as possible.Then I let her alone and checked on her from time to time.It took awhile but she finally became "Potty Trained".
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Reply to luckylu
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It is difficult to care for an adult dealing with incontinence issues. I know a lot of family members are not prepared for this phase of life. My father was doing well at the beginning and then towards the end it was a struggle because he was becoming weaker and weaker from heart failure and probably vascular dementia. I know I was getting burned out. It takes a village to raise a child, but it also takes a village to care for our elders. Sometimes our compassion and understanding are tested over and over every day. We must all find the strength to carry on the best we can.
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Reply to cdnreader
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The incontinence of 1 & 2 is bad, the clean up involved, the odor which seems to linger until I open windows & go crazy with cleaning. With his ALZ progressing my brother requires hands on, yet, he still wants control, so direction & guidance is a challenge. He's resistant to my assistance, I must be focused, strong, on my guard. "Get help," I hear, but some don't get the struggle involved with that. Most will shy away from "messy duties," even with offers of decent $, or may not want to address behavior concerns. I get it. 6 years ago I was clueless I guess about this d--- disease. I see his old tough self & hear strong vocabulary from his well days. I so wanted to bond as siblings, thinking & hoping for a chance, not to be. As a country we need to address ALZ more diligently. Educate and compensate people appropriately who take on a caregiving role, they deserve it. Nice facilities when a caregiver's when time creeps up and not so far out of reach for most everyone $ wise. I don't wish any disease or illness on anyone, this ALZ is not nice! God Bless Caregivers
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