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That is the last thing I want to hear. also people at work ask how my husband is i tell them very weak and depressed. they say very hateful. well he isnt going to get well overnight. that is like telling someone who is walking through the desert and is thirsty and tired and worn out that you are not going to get out of the desert overnight it will take a long time. they offer no help. no water no nothing. i would rather they just keep their mouth shut. i am so tired of the comments. i dont know if my husband will ever get back to normal and be well. i do know i love him with all my heart. i know there is nothing i would not do for him. he is my heart and i love him so much. i am just tired.

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My stepmom takes care of my difficult post-stroke dad. We made an agreement - to tell each other the truth. I take care of him one weekend a month - he had a fall in January that resulted in a trip to the ER and AFTER that she commented that he had fallen a lot lately. I should have been warned.

In addition to the truth - our agreement is that she can vent to me safely & i'll just listen. (in other words I won't offer ideas unless that is what she wants). Sometimes she just needs to vent, me listen, understand, we usually end up making bad jokes, and laughing. She says that helps.

Also - finally - I tell her what time I have and she tells me where she needs the most help. the one weekend a month is a God-send to her. But I also stop at Walmart on my way up to pick up things they need, that she can no longer get out regularly to pick up. (she has a caregiver two afternoons a month and we agree that she needs to do fun things - like lunch with friends, bowling, etc). I also do online/free shipping shopping for her. I help with websites for Medicare, their insurance plans, etc - since she doesn't feel comfortable on line.

The point I'm trying to make - is that if we ask a caregiver how it is going - we should encourage them to be honest, and just SHUT UP AND LISTEN and empathize. Sometimes a release helps. Then pay attention over time - how are they doing - if they look exhausted, buy them a coffee and listen. If they are struggling at work - help occasionally with workload.

I think LISTENING with empathy is a key.
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Jim - Wow! I'm exhausted just reading your post!

It doesn't sound like you have much of a support system. Maybe you have already tried what I have to suggest, but here goes.

Ask your doctor or hospital to put you in touch with a social worker. If any of your charges has disability, pester their social worker for help. Even if your wife is not a senior yet, contact your local senior center and "area agency on aging" and request an evaluation of her needs. I see you live in South Bend, and I would hope that a college town would have some good resources. Have you talked to anyone at the Alzheimer's association? They have a lot of help and advice to offer.

I hate it when I ask for help, and instead, am given more work to do! But any energy you can invest in getting more help will pay off. This is a stereotype, but as a man, do you believe you're supposed to handle it all without help? Fight that attitude. You need to take care of yourself (by getting help) before you can care for others.

To get better responses, ask your own question. Tell us more specifics about your family. Tell us which parts drive you the craziest. Best wishes to you.
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yvonne: And my personal fave? "God never gives you more than you can handle."

Like, what is that???!! I'm agnostic, but that phrase makes me want to hit someone upside the head. Argh.
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Jim,

You are understandably overwhelmed, but that does not mean you are being punished.
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You are overwhelmed. One person to care for is plenty, but four? What you're not being is punished. Why should you be, and by whom?

You've been presented with a complex challenge, so treat it like a project to manage. The factors are time, personnel, finance and facilities to set against the needs of your loved ones and your priorities. You can't do it all. So what has to come first, who can help you, who's paying and what are the logistics involved? Try mind-mapping, imaginatively, to see what additional support would make life less impossible; then reach out to ask for help.
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I am caring for multiple people and am overwhelmed. My wife has early onset dementia, my son had cerebral palsy, my sister is mentally handicapped and my daughter is mentally ill. I am overwhelmed and feel like I'm being punished. Thoughts?
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i just want to vent too. i have my mother with dementia, now incontinent all day and all night. No help at all from 10 siblings. not an offer. I want to keep my mother because i truly absolutely believe she deserves to be in a family home as long as possible. but if i could have one day to myself God knows how much i need it. And my in home caregiver is about as LAZY as one could ever be despite numerous reminders of how i want things. worst of all, today, when i vented to a friend, she scolded me and told me to just get over it all. find someone to talk to. right. i guess i learned that lesson. will keep it to myself now and just try to hang on as long as possible. what's the right thing to say? how about "how brave and kind you are as hard as it is to follow your own heart and do the right thing" instead of making one feel like the lonely fool for taking a parent in because they DESERVE it. how about "you should be so proud that you are standing up and doing the right thing". i don't believe God will bless me more than others. i don't believe He has. I just think this is how the world works. some feel the duty and responsibility and some simply and selfishly don't. it's as simple as that. period.
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Yvonne I would love to be able to come and help you or bring you a meal... please take care!!! I know when you really love someone it is hard to not be able to instantly "fix it"...I hope things get better soon!
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We all relate to "tired" and needing to vent. Others not walking in our shoes have no idea how hard it is to not snap and go postal on insensitive comments. I have to have all my energy to be calm and use a quite voice with my patient. Others who are just being jerks, do not understand they are blundering thru a land mine field when they say something stupid. I keep my mouth shut because I do not have the energy to go back and make ammends...lol...We all understand each other and have no judgement for the bad days. Thank you for sharing and go look in the mirror and tell yourself "Good Job, I did not slap anyone's face"
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I've never done this before - but, I feel that if I don't get it out I'm going to burst. My husband is sick with congestive heart failure-stage 4- he's 14 years older than me & I'm really beginning to feel that I can't take care of him any more- it's so stressful. I love him very much and we have 2 beautiful children - but, he's been in/out of the hospital for months now and the only rest I get is when he's in there- it's nuts! Is it so wrong to feel that I need a break so bad that I am better when he's in there. My family (siblings) don't get it - most of them have spouses that are closer to their ages and are generally well- my husband has not worked since Dec '07 - we're on the brink of losing our home - we've had to do bankruptcy. I have sort of a "support system" with my church family- but, they're even getting tired of the glum news from me constantly- and I've missed every Sunday for the last 6 weeks anyway. Sorry, I can't seem to stop writing. Just had to get this out to the "void" or whatever. I'm even on my husband's gmail acct now. Please email me~~ if you have any suggestions on how to handle this- I'm at my wits end- the only person I have at home now with me is my 14 yr old son and I can't very well tell him how dyer the situation is- thanks so much to anyone with any suggestions-
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I've never done this before - but, I feel that if I don't get it out I'm going to burst. My husband is sick with congestive heart failure-stage 4- he's 14 years older than me & I'm really beginning to feel that I can't take care of him anymore- it's so sad & stressful. I love him very much and we have 2 beautiful children - but, he's been in/out of the hospital for months now and the only rest I get is when he's in there- it's nuts! Is it so wrong to feel that I need a break so bad that I am better when he's in there. My family (siblings) don't get it - most of them have spouses that are closer to their ages and are generally well- my husband has not worked since Dec '07 - we're on the brink of losing our home - we've had to do bankruptcy. I have sort of a "support system" with my church family- but, they're even getting tired of the glum news from me constantly- and I've missed every Sunday for the last 6 weeks anyway. Sorry, I can't seem to stop writing. Just had to get this out to the "void" or whatever. I'm even on my husband's gmail acct now. Please let me know if you have any suggestions on how to handle this- I'm at my wits end- the only person I have at home now with me is my 14 yr old son and I can't very well tell him how dyer the situation is- thanks so much to anyone with any suggestions
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i won't say i know how you feel
i will just add to that
my mom is physically disablied and because of the years caring for a parent with alz
i think it affected her even though the dr say she is fin she repeats herself daily and forgets she said that 5 min ago
anyway she hates people telling us if you need anything let us know
if there is anything we can do let us know
god will not give you more than you can handle
god is building strength
you will be astronger person for this
moma is 70 i am 49 in a couple of weeks
hello we wish people would be honest with themselves
at one point in 2007 i had my mom , my grandmother with alz and my husband who had becom disabled and died a year later all at the same time.
i sur could have used some place like this to vent from time to time but that wasnt the worse
i think it is worse now just me and moma
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my wife has had parkinsons for many years and it is a relentless and seemingly endless illness. as her primary caregiver, it has become almost overwhelming to me despite having a housekeeper that helps us 3 days a week/7 hours per day. as the parkinsons progresses, my wife's life closes in on her and it also closes in on me...i.e., confining my life and historical freedoms. altho i am healthy i feel so trapped and without a future. all the while i remember the cartoon showing a couple inside the curtained emergency room. he is in a complete body cast (having experienced some disastor). she is on her cell phone saying to a friend, "you won't believe what happened to me today". i'm trying to do the best i can, but day after day that is what i feel. parkinsons is just relentless and seemingly endless. not feeling like this is my calling.
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And Jaye, you are a hero in ours! Great perk for your efforts. And what a blessing for you to be thanked for your hard work. Enjoy!
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Jaye, Treasure those words in your heart!!!

And you are a saint in God's eyes!!

Feels good to be appreciated, does it not?!

Hugs to you!
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thank you!!! I do appreciate everyones kind thoughts... I had an interesting situation on Saturday... My sisters came to visit. I help care for our elderly parents... My older sister who only sees Mother and Daddy once a year told me I was a *#* #*#* saint!!! I am not of course... but I thought it was hilarious!!! She also told me she really does appreciate all I do for our parents.
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Tom, We have all been there and done that! And so many are dealing with much worse than us. Glad that you are here to vent with us. We are in your shoes - some shoes are more worn than others. We all are dealing with things and we all are learning to deal with them in our own ways, whatever those ways may be. Hugs and prayers go out to all of my fellow caregivers today!
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The last thing I want when life hands me a bushel of lemons is to hear minless platitudes, regardless of where they come from, whether it is from the Bible, or some secular source. Unless these people have walked in your shoes they cannot relate, and there really is little point in sharing your woes with those who have never been there. I find that even my friends don't quite 'get it' even though they are fond of me and would never want anything bad to happen to me or my mom. That is why this site is such a wonderful resource. Since I discovered it, I think i have come here every day and read through a thread or two, maybe posted a message, or gave a hug...I realize that there are those a heck of a lot worse off than I am, so I feel fortunate about that. But my pain is real too and like all of us here, I want relief from my pain too. This site helps by letting me vent and share my frustrations and yes by allowing me to see that there are others even more 'pained' than I am. For them I have nothing but wishes for some pain relief...one day we will all get to the other side of this and I hope we are as fortunate to have someone as good as those of us here caring for us. That's what keeps me going sometimes...knowing that what goes around comes around. I hope this helps someone.

Tom
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Yvonne haven't heard from you in a bit so I'm sending out this S.O.S checking on you.

Keep in touch
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I often think people don't know what to say so they say things that are not helpful or appropiate... take care, J
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Gigglebox, that is so great of you to keep praying for Yvonne and her husband. I've read back through these posts, and haven't seen one from her in awhile. Hopefully, all is well with them. Yvonne, you're in my thoughts and prayers, as well. You're not forgotten by your online community.
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Yvonne, how are you? My thoughts and prayers are with you.. sorry to get off subject...hoping that you are having a good day today... you are on my mind for some reason and so I am praying for comfort for you, for rest..for whatever it is you need. God knows. He cares. We care!
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I am there with you, SS! GRRR! I am gonna have to cash out some CDs next - I am grateful to my mom's financial expertise.. however, he didn't listen to her when he needed to! I am also grateful for the good care he gets!

Yes, a Ky state park - we went there for Thanksgiving 2008 and it was THE BEST Thanksgiving ever... new traditions with just our family! It was an emotional experience for me! My mom loved rainbows, you see - and always told me to look for God's promises. When I was at college, she would call me whenever she saw a rainbow. When I was married and outta the house and she saw a rainbow... It was no coincidence that the night before she died there was a DOUBLE RAINBOW in the sky.. Revelation talks about rainbows circling the throne of God... awesome!!! At the Falls, we saw several rainbows that day!

As for the mess, yep, a learning experience! One we don't want to leave behind for our kids, fellow caregivers! Keep that in mind! I don't know about you, but I tend to see a pattern... my parents taking care of their parents and now we are taking care of our parents... what about our family and our kids?

I am writing a novel today, aren't I? Just needed to vent, I guess... and reminisce as well.
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Gigglebox, Thank you. Are you talking about Kentucky State Park? I Googled it and that's where the Cumberland Falls took me too. Funny you should mention it; I'm paying NH bills today, too. Not fun. But I am thankful for the great care my dad gets, despite the fact that he didn't manage his finances well. I'm still cleaning up their mess. What a learning experience!
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Like the lamb, Sis.. ck out Cumberland Falls website.. it's really a neat place and so relaxing... Yes, dwest, we do suffer more than they do.. my dad is content where he is and some days are better than others for him.. but isn't that like the rest of us.. today hasn't been one of my better days as far as getting anything done, but I am plugging along, for example.
I have to get started on some of his paperwork, including paying his nursing home bill..grrr! That always brings me down... private pay.. the $ are dwindling, my friends, but then again, he worked hard for it all of these years so he deserves to be taken care of !
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"My mother-in-law isn't 'suffering' from dementia. She is 'enjoying' every moment of it. :)"

naheaton,

I think we suffer from it more than they do.
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Gigglebox, that is so beautiful. I never heard of a moonbow before. Wonders never cease! God is good to work through us caregivers, and for us to help each other. That is truly amazing grace! As for the Zoloft, I think I'll stick to Good & Plenty's for me... My dad is on some other stuff. Seems to be working. I hate watching his decline, though. I hate Alzheimer's. The only blessing I can see, is that he might be escaping some junk through memory loss. Hard to imagine things from their perspective though. I don't think my dad is suffering too much. He seems fairly content...most of the time. Poor souls!
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We keep one another going - that is Cumberland Falls here in Kentucky - where you can actually see a moonbow! I am a sucker for rainbows - they remind me of God's promises, including seeing all of the good in people! As for the zoloft, that is some good stuff!
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Yvonne, hope all is going well for you. I don't just mean that as a platitude. We are all here to support you. How are you doing?
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nheaton, love your: "she not suffering from it, but enjoying every minute of dementia" phrase. Love it! :)

AlzCaregiver, I never met anyone who embraced caregiving quite like you, and admire you for it. Love your blogs. They are very interesting to read. I endorse them highly, as well as her pictures, visiting characters, visits to fountains, the cafe and hairdressers, and the squirrel and flower videos, as well as the ballet. and Valentine's Day. Hope I didn't give all the juicy stuff away; they are so cool!

Gigglbox, love your new Avatar. Great falls. Hope all's well with you. ~In fact, with all of you!
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