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We caregivers are counseled to put ourselves into the minds of our loved ones. It is so hard, but I have been trying  to do this, because if I don't, I find myself being constantly irritated and my tone of voice is angry. I was told to respond to the constant repetition of questions throughout the day with an attitude of "please pass the salt." That has worked for me until recently, but I can feel that my "tone" has become increasingly frustrated and even angry. I can still remember when my husband was a bright, funny, capable man who I could always rely on and talk to about anything; who, although it did not come easily, could apologize when he was wrong, and whose affection always brightened my day. All of that no longer exists. But I know that his soul is still there and because of that I must keep telling myself how it must be crying out to be heard and I cry with him and for him. Yesterday I could tell he was more tired than usual and cranky too -we'd had a big day the day before as we celebrated out of town with family a birthday. He had not been around that many people in a long time and though he did well while we were there, I think it was exhausting both mentally and physically. And so I promise here that I will keep trying to be a better caregiver and to somehow help this man feel loved.

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You do love him, and that will help him feel loved.

Having some respite can help your attitude. My husband bowled with a senior league. A neighbor picked him up and returned him. That one morning a week to myself was very helpful in extending my patience! Arrange some breaks for yourself!

My husband was very aware that he had dementia. We called it Lewy, since it was Lewy Body Dementia. It was helpful to be able to say, "Oh honey, I'm sorry I was so crabby with you before dinner. I wasn't really mad at you. I was mad at Lewy! I love you very much and just wish Lewy would leave us alone."

It isn't fair that the bright, funny, capable man you married is no longer there for you! Of course it is not his fault. But you'd have to be superhuman not to resent it sometimes!

Another thing that helped me a lot was belonging to a support group of other caregivers.

She, come here and vent, if it helps. Many of us have been in your shoes.
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She, don’t ever beat yourself up or call yourself a failure. We do the best we can. My husband does not have dementia but he is bedridden and I do everything for him but feed him. I get angry, I get tired and I get depressed. We all do. I call my husband “The Minister of Silly Noises” because it’s almost like he has Tourette’s. I desperately wish we were one of those Senior couples they show on television. Active, nice house and clothes, joyful, social...but it’s not in the cards for us.

Saturday was a long day for you. And for him. He was overstimulated and over tired. That happens with me when I try to get hubby out of bed, into his wheelchair and into the car. I have a lift but it’s not electric and he’s over 300 lbs. Last time his power chair would not go back up the ramp. I had to push him and the 400 lb. chair UP the ramp. He was borderline  hysterical and so was I. I was bruised and sore. And boy, was I cranky on Monday.

You are doing the best you can. You care for your husband, keep him fed, clean and safe and as happy and content as possible. This is a nasty, horrible and unforgiving disease for all involved. We all wonder what we ever did to deserve it.

Make sure you take “me time” when you can. Right now, after a really tough day that started at 5:30AM, Hubby is asleep and I am on my iPad. This is my me-time.

Come back often for hugs and support. ❤️
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I was just thinking this very thing this afternoon and I guess I look at putting mymyself in my mils shoes. I can't and won't do it , not because I can't do it or because I don't want to . But because I ddon't think either of us is ready for that or maybe I am already there ?
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Dear She1934,

I know its really hard. Even the most patient person can feel worn down. I hope a trusted friend or family member can give you some respite.

I tried to be as empathetic as I can be most days, but sometimes the pressure and daily routine does take its toll.

We all know you are doing everything you can.

Sending you hugs.
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Don't forget it was a long trying day for you as well. You are only human and your husband knows what a trial this is. I bet if he could talk to you he would say, "Stop being so hard on yourself, I love you and appreciate everything you do for me, you show me a thousand times a day how much you love me, I am a blessed man!"

Give yourself more grace, you are longing to be heard as well. HUGS & STRENGTH 2U!
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Dear She,

**Hugs!***

You don't need to question yourself. The fact that you are trying to be pleasant, patient and not cranky shows that you love him and wish to do more for him. But all of us are human. We have good days and bad days. We all get tired from time to time. No need to be hard on yourself. Try to get some respite and recharge yourself.
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We all have days like that. My mom is only mean to me, when my brother is around shes an angel. Pray,forgive and move on. Hugs and kisses. If God didnt know we could handle this, he would not have given it to us. Love ya.
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How to balance empathy with personal shields of sanity … it is no easy feat. Maybe you could have a mantra or song to cling to. What come to mind for me is the song: "Mama said there'd be days like this."
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I just convinced myself that my joining my mom's view of reality was like Santa Claus and the Easter Bunny. Now all I need is the Tooth Fairy with some money under my pillow, since, as we all know, caring for someone with Alzheimer's can be an expense, either when hiring someone to be with them, quitting working yourself, etc. When all else failed, I'd pretend that I either heard the phone or needed to make a call. A phone-y excuse, I know, but it allowed me to regroup and recoup.
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We are only human. That’s it. I think we all try to maintain a constant, cheerful attitude. And then there is the unthinkable: either major with blood and feces or just plain irritating like a facial expression or wacky request. I handle the major stuff and then the turning off the air conditioner when the outside temp is 100 drives me nasty. I hide the remote to it, and somehow, someway my 96 year old mother can find the off button, turn off all ceiling fans, close purposely open doors and be back in her couch spot to watch Perry Mason reruns in the time it takes me to use the bathroom.
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This sounds so familiar. I also get tired, cranky, frustrated, angry. It's so difficult to cope with my husband's numerous questions about who I am, where is my wife, what is your name and having to listen to the same questions daily while taking care of his medical needs, bodily functions, shopping, cleaning the house, paying the bills, etc. Each day there is a new challenge to face and coping with his deterioration is hard but I keep telling myself that there isn't anything that I can't do. That attitude over rides giving up and although I don't have my "partner" here anymore to laugh with or share special moments that we once had, I'll cope until the end.
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Dear She - everyone has responded with wisdom. It sounds like you cope well most of the time and this happens to be a particularly difficult moment when your emotional and physical reserves have been overtaxed (along w your husband’s). Very natural. Like others, I wonder if you schedule a regular time to “be heard.” I talk to a therapist regularly who also took care of her mother w dementia. These sessions are very helpful for me to get out what I’m feeling with an empathetic person who knows how to listen. Your heart is in the right place - give yourself as much love as you do your husband. Stay strong
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This post reminded me to really try to be more patient with my DH. He had a liver transplant 12 years ago--and although he lived, he's never been the same. Deep, deep depression has been our constant companion since. 2 weeks ago he had a massive heart attack---and wow, although I truly did not think he could sink more deeply into the darkness, he has found a way. And I don't see a way out of this. No meds seems to help, him, he is non compliant in his own care....and I find that my own natural empathy is on high alert and I am so anxious I could chew nails.

Haven't settled into any kind of a routine, post h/a. He just sleeps and sleeps. 100% against what his cardio doc wants. If I say ANYTHING about ANYTHING he shuts me down with a sarcastic, mean comment. I inquired if he'd attempted any of the list of things that the drs have ordered and his response is the same "I'm just so very, very sick, you don't KNOW what this feels like". True, I don't, but his dr saw him on Tues and was shocked the guy hadn't gone back to work, even PT.

We've been on the merry go round for 12 year. He's only 66. I am so tired. YES, he can still work FT and that's right where he should be.

Thank GOD for my therapist. And this board. I am sitting right on the fence of "stay with him" and "leave and have a life". It's awful, to feel this way, every day, every second. He never, ever thanks me. He never says he loves me. He just lays in bed and groans.

I can't give him more love, I don't HAVE any more to give him. Plus which, he does not care.
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ohmigosh! GAinPA and robinr -- thanks for sharing your stories! My world, too!!! Mom worries about my rosacea, but it only flares because she keeps the apartment so warm....
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She1934: “But I know that his soul is still there and because of that I must keep telling myself how it must be crying out to be heard and I cry with him and for him.”
That is the most insightful, poignant thing I have ever read on any of these pages. Yes, I believe that the real husband you know and love is aware and suffering along with you on how things have come to be. My hope (and belief) is that souls can see levels above us concerning what life is really all about, and the depth and understanding of your love.
I WISH THAT ALL THOSE CARING FOR THEIR LOVED ONES HAD YOUR UNDERSTANDING AND LOVE.
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I know that I erred when my response to my late mother was "you already told me that: when she would state the same thing 1,001 X over. My response should have been "oh, that's nice."
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I know you may not afford it but....you may live longer than the one you love & Care for...leave them home & you go to the large celebration. They do "showtime" & it wears them out so they become themselves when home, frustrated & crabby. I find even grocery shopping short while is fine after a scenic ride. I try to do this during sundowners time when questions are repeated. I feel my alz hubby isn't as trying as many of you even tho it's been 11 yrs. Very slow changes. Support groups where you spill it all out to others in the same boat is free therapy. Go every wk if you can. Call Alzheimer's hot line 24/7. They are trained & will listen. We caregivers are a special group & we need help but also can give help to other caregivers. I feel that is a gift I had no idea I had. You don't need a degree but patience & laughter gives you a calming life. Read "Alzheimer's Reading Room". Many subject ideas by a man who learned how to get his mom turned around & happy. It's free.
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I know how you feel SHE. My husband has liver cirrhosis NASH and gets encephalopathy due to ammonia build up. He can't speak words when he's like this and gets very ornery and mean. He can't comprehend anything, can't dress himself, refuses his medication. Sometimes wants to walk around naked and even went outside in his underwear. He has had to be hospitalized 4 times in the past 6 months. I try and try to be loving and kind...but it just doesn't work. I get so angry...at myself...for not being a good caregiver. But as you said: he was once a funny, loving, capable, and caring husband and now he's not...and never will be again. It's sad and frustrating. But we can't give up. I guess we need to just count the blessings and moments we have had, and ask for strength for each new day.
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Hi, Sorry to hear that but honestly we all feel that way from time to time, right gang,? Its nice to have this support group were we can vent and know that were not alone. You do need some 'me time' whether u get it when there napping or sitting calming. Right @ this very moment im having me time, its 637 am CST, my mom is still sleeping, so I usually sit around with a cup of coffee, read the word, and be silent. I wish I can go for a walk its really beautiful out, but I can't so I'll just sit, drink, read and be merry LOL - I too at times feel angry, frustrated, lonely, bored, hate, depress N sad to see my mom like that (ALZ) I can't even have a decent conversation with her, my mom is here with me physically only not mentally, but I believe deep down her soul/heart she knows something is wrong with her, but I'm here for her and we can all be glad that were able to give them the care,love that they gave us, though my mom was something else raising us, but I learned to forgive, she had a really rough childhood so she didn't know any better. I know that's no excuse. Don't feel GUILTY about your negative feelings towards your husband there normal. What's not normal is when we let these feeling rob us from taking care of us and those we LOVE. I'm sure your doing the BEST you can, just having him home is already a big PLUS, we decided to keep our LOVE ones home and take care of them. So if possible take a few minutes for yourself so that you can continue on. Lets try to have a GREAT weekend!
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oh, midkid58, my heart breaks for you and so many on this site. I am grateful to all of you for all the care and love you provide in such difficult situations. :( God knows what you are doing.
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Oh my G-d , its so hard to keep my cool sometimes. I found myself telling my Mom " thats not logical" yesterday .. shakes head. It dawned on me i was being an ass ( not for the first time) . But 24/7 is not an 8 or 12 hour shift and going home. 24/7 w/o help or sleep is whole Other level of hell that Dante never wrote about. Soo cut yourself some slack and get help ..Take a break . .understand you human
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GaINPA, I'm still laughing; we both are! How does she DO that?
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My husband doesn't appreciate anything I do but he gets very upset when I take an hour away. I don't leave him alone. Usually a family member just happens to be coming over so I can leave. He knows that I have arranged for someone to come over and he get angry saying he doesn't need a babysitter. But I really need some time off. A stranger in the house will make him very upset. I read all your blogs and it seems there is not solution but to buck up and take care.
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One of the best things you can do for yourself (and for your care-receiver) is to find a Caregiver Support Group through an area church or medical entity and join it.
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Support group in my area is once a month at 7pm in the evening. It is not good for me or my husband. I agree with your suggestion. I would love support group.
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If you could pick a time good for you & people you know of are caregivers, start it & listen & share. Do it same day weekly if possible. You will be amazed how it lifts your spirit. You don't need a degree to be a facilitor just good listener. It's free therapy for all.
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Because of my own health issues I have a hard time controlling my voice volume, and I am sure, along with her bad hearing, this is part of her taking things the wrong way. But I also worry about myself falling, and then what? Scary!
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Lost: Since you are disabled yourself, do you think you should find a new living solution for your LO?
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Llama, yes, we have talked about that. But money talks, too. Right now, we're paying my daughter (who is currently unemployed, but has a medical background ) to provide 24 7 care. All agree she (mil) should be in a facility, but we can't afford it without selling her house and property first, and with MY HUSBAND and his SIBLINGS I don't think that will ever happen.
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Lost: I understand that as well. I went through some of that with my late mother. She lived out of state (not the same state as mine) by herself, was 94, legally blind, had A-fib, Congestive Heart Failure, Arthritis, Incontinent one way (soon found out it was both) and blood pressure of 60 over 40. She demanded that she stay in her own home leaving me no choice but to leave my home and move in with her. We tried reverse mortgage, home health aides, and a lot more, but all of it fell through. She passed away from a stroke. I know what you're going through, BUT it will end.
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