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We do not have control over the financial plans our loved ones have made. Sometimes they had no money for long term insurance. Sometimes they were foolish or short-sighted. Maybe they were too busy working to put food on the table to get financially secure and independent.......................
These great folks here step up to the plate when things get difficult, usually without thinking about themselves first. We do the best we can with what we have handed to us. We could walk away-wash our hands of it because it is "too hard" or we are "too busy"..................
Money helps a lot. A real lot. But it doesn't provide love................
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I disagree VictoriaK--I believe that you yourself haven't yet reached the 'burned-out' point that the rest of us are at...if you did, you'd understand. Do you wonder what to make for dinner every night that's tolerable with ALL the diets restrictions? Do you have a lock on the fridge, an alarm on the stove and on the doors of the house in case the Alzheimer person you're caring for gets up in the middle of the night?? Do YOU go through the morning PRAYING the person your caring for will take a nap for at least 20 minutes so YOU yourself can take a shower and wash your hair so the medical supply delivery person doesn't think you are disgusting? "Burned-Out crowd" is EXACTLY what most of us are, as N1K2R3 has said. Those of us strapped for finances have to deal with the painful realization that nursing home care isn't an option because the world is about MONEY, not people. Please understand when those of us that are dealing with the constant bowel accidents, vomit, adult diapers, bedsores, catheters, foot problems, verbal abuse, dysfunctional medical equipment, prescription drug side effects and percentage bills of things medicare 'didn't cover' ARE in fact BURNED-OUT. And I HOPE you NEVER get there!
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And I am just damned proud to be part of the 'burned out crowd'.....
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Mary213 - I'm with you. However, my aunt is with me not just because of finances (what are those?) but also because nursing homes in Indiana are practially at the bottom of the list in terms of safety, cleanliness, you name it. As a nurse, I worked at a nursing home here in South Bend once - I lasted 6 days. The abuse I witnessed - physical & mental- the stealing, the absolute indifference - it was beyond appalling. So, I quit, filed a complaint with the State and 2 days later got a call from an investigator telling me she had verified every single charge I'd made, except one. And that was because the resident was too afraid to speak, for fear of repercussions. The state ended up firing every nurse and CNA, as well as some management. In a few days, the place reopened "under new management," rehired the nurses and CNAs, instituted a pizza day, and went on as before. And this is not even the worst place! But finally, I would never put my aunt anywhere. She was the first person to hold me. She was more of a mother than my own mom. No nursing home is going to make her coffee and arepas (she's Colombian originally) for breakfast, or sit up at night watching John Wayne and Robert Duvall movies eating butter pecan ice cream with her. I am part of the burned-out crowd some days, but hey, we're part Phoenix! We rise!
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And try to remember, people have their sick family at home because of personal finances, but usually, because they do not want to put their loved one in a NH.
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As I said before, NH's are SO much better than they were 30 years ago, but, they are still NH. A stranger is caring for your loved one............
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An example: when my kids were young I always wanted to stay home with them. Lots of reasons, love, compassion, happiness, responsibility, but one point that is rarely spoken of,.............at home I knew the quality of care they would receive. If they got yelled at, I knew what was said. If they got a lousy meal, at least at home I knew what that lousy meal was and I knew how much they had eaten. If they scraped their knee, I knew that it was cleaned properly and in a timely manner, and there was a kiss and a hug given. This does not mean that I hate child daycare........I have used daycare and my kids were really happy to have other kids to play with, but my daughter, for example, had diarrhea almost every Friday for months and months. The daycare was adament that staff wash their hands properly, had signs and a handwashing station, was not overstaffed, clean staff, friendly, lots of laughter in the halls, clean place, clean kids, but when she did not go to daycare, she stopped having diarrhea. So, she stopped going to daycare and she didn't have diarrhea anymore.
Folks who keep their loved ones at home think like that. Government services are not going to change that. Family and friends stepping in to help, really help, is what is needed. No government can ever do that.
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N1K2R3, What's the definition of "burned out crowd". I'm sorry but I feel offended, if not for myself then for the many others on here that may or may not be burned out. I wouldn't necessarily refer to those of us that are currently caregiving for someone as the "burned-out crowd". A lot of us feel burned out a lot of days, but to label us "the burned-out crowd" is very offensive. Then to say, "The only relief you are going to get is to PAY SOMEONE to take over the care...." Wow. Yeah, we feel burned out a lot of days, but we CHOOSE to do what we do. I would prefer that you not tell me what relief is available to me. Bottom line, while I understand that your heart may be in the right place, the way you're phrasing things is going to tick number of people off.
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Hummm... Ok N1K2R3... You really see things in Black and White... I have a sister that sounds a lot like you.. "cut and dry"... I would venture a guess that most of the cargivers on this site are in the situation that they are because of human compassion and love for the person they are caring for. In my situation... I am caring fulltime for my daughter who is 29. Gee I guess that I never gave it a fleeting thought that my daughter would have a heart attack at age 23.. I sould have realized that my x son inlaw would screw her over and leave her in limbo for "greener pastures"... I Love my daughter.. my husband loves his daughter... but guess what... humanity doesn't live in the government. My expectations for my daughter was that she would slowly but surely get better. Get back on her feet. Be the young person I had envisioned when she was 5,10 and 23!!! NOOO... it has not happened... 6 years later... I am burnt out... crispy fried... I have no funds. I don't know where you come off thinking that all of us were just so damn stupid to ... "pre plan" for disaster. It might just be that we love our family... that we just need some relief to balance out the crap in life that we are all facing...
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Dear Mary, I stand corrected on many issues. Healthcare here is much better than most places in the world. It's the caregivers that I was addressing....these people are the burned-out crowd of people who work endlessly and take verbal and physical abuse (sometimes) when caring for their elderly relatives. As I mentioned, the only relief , as I see it now, is to pay for relief....Inhome caregivers, Nursing Homes, Assisted Living Facilities and possibly a group home. ugh.
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I agree with your point on long term insurance.
However, much of the healthcare our elderly receive is pretty good.
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In my opinion, many of our elderly would have died long ago without this good healthcare, so now, we have older, sicker, more dementia than we used to. It is not that the system doesn't value older people, it is that the system is overwhelmed with needs it has never faced before.
Think about it. When you were young, did you even know about Alzheimers? Did you think that they would give chemotherapy and radiation to an 83 year old woman? Thirty years ago a broken hip was a virtual death sentence.

I dealt with geriatric care almost 30 years ago. I was in and out of hospitals and nursing homes with my grandmother. - in the big city.
This go-around, the difference is like night and day, so much improvement, so much better, gentler, cleaner, faster, overall better medical care, actual improvement and more comfort and less pain for the patients. - in a small little town in Florida.
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The nursing home is clean all the time. The nursing home does not smell!. My mom is clean all the time. The patients in the halls are aware, friendly, they smile and they are wearing their own clothes. There are activities, a dining room that isn't horrible, pets are allowed to visit, and so on. A huge improvement in 30 years. Thirty years ago the patients in the nursing homes were really, really sick and frail and usually were not mentally sharp. Now, excepting dementia patients, their old bodies are giving out long before their minds. Dementia patients seem to be almost opposite.

The folks on this board are doing a very hard job that their parents probably never faced. I have been doing some reading on the board and I don't get a lot of complaints about the crappy medical care. Folks are generally dealing with the 24/7 care that is overwhelming them and smothering any life/fun they had before. They generally seem to just want a little help, a break, a vacation, someone to share the burden with. The folks on this board are, generally speaking, doing the day to day care at home. Single payer won't help.
If you think other government medical care systems are better, make sure you have done your reading. Read about Canada denying older people surgery because the cost-benefit ratio is not good (too old, won't get many years out of that knee replacement). Read about England that has been helping old people die without their permission. Little countries like Sweden have so little in common with the US that their system would never work here (small population, quite homogenous population, different culture).
And you may want to ask: What do other countries with government run healthcare systems do with Alzheimer patients?
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My heart goes out to all of you who are suffering due to the care of your elderly family member/ Doesn't ANYONE have the so-called Long Term Care Insurance? (private). This was a big seller back in the early 2000's. The only relief you are going to get is to PAY SOMEONE to take over the care. I don't see it any other way.....whether it be a Nursing Home, an Inhome caregiver, or Assisted Living with 24 hour watch. Money speaks. Sorry. Until this country realizes that the care of our elderly is as important and time-consuming as infant care but more draining, and therefore should be allowed under a Single Payer system of medical care, then many will suffer and suffer badly.
I'll take heat for this comment, I'm sure..
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A note to the person calling their self anonymous... You either have lived in our shoes and decided that the walk was just to hard and long or you are the family memeber that thinks they have no responsibility to the person in need of care. I would like to think you realized the walk was just to hard for you! There is nothing wrong in finding the road too hard, to relentless, to demanding! That is what all of hope to find in this site.. Support, hope, a shoulder and an empathetic ear! You sound like you have had a bad time with whatever your life has been. The saying about "misery" loves company...does not relate to the caregivers that have given more then they have...mentally, physically and rationally. We are a family in our own rite. We understand and we stand as a unit no matter where we all might live. We are sisters and brothers here.. We are here to hold each other up not tear each other down and definitely not to make any of us feel more inadequate and helpless then we might already feel. We must stay strong and we must help each other to know that we are not alone,if only because of this site.
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Hi everyone: I think terrimerrits has either been banned or left AC. If you look back at her last post, she is now under the name of anonymous and you can't click on her name. I understand that some other posts she made were reported and have been removed from their various threads.

I admire all that you do for your elders. I took care of mine for 7 years and just a couple of weeks ago placed my dad in nursing home care. It was a very hard decision to make and I dreaded doing it. I now see him all the time and he is making the adjustment. I feel bad, but his 24/7 care was taking it's toll on our health and my husband and I needed to have a life too. We retired 8 years ago and are now, for the very first time, realizing that we have an opportunity to have our own routines. We are going to have to figure out what those routines will be because from the time we retired, it's been all about my parents. My mom has passed and my dad is getting very good care in the nursing home.

I know everyone has their own journey. I hope all of you can find a way to take care of yourselves. Mary, I do worry about you. You've done so much and I wish you could recover your life. I know you will do what you can, but if you ever want to talk, just post on my wall.

Love to all of you, Cattails
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I thought I was alone until I found this site. I have been taking care of my mom for 12 years. For the last 5 years in my home. I have felt very alone. My husband and son has tried to understand. But, their not here all the time. I get very little help from my sisters. So, I feel burned out, angry, guilty,like no one could possibly understand. I haven't been on this site long and this is my frist post. But, I think I found some understanding folks. Thanks for reading.
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Wow, this is great! I sure needed to read these comments today to know someone else is in my shoes. I have being caring for my 7 yr old granddaughter with Autism since she was 2 yrs old. 2 yrs ago I moved to AZ from MO to care for my dad with Alzheimer. My husband moved out here 1 yr. ago, for we are selling our dream home in MO. It's like taking care of 3, 3 yrs old sometimes and my granddaughter is being good. I'm hearing the echos too and I know there are more of me out there, doing are very best even on those really bad days. Keep the good work up!!!Hang in there, were with you.:)
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Suzmarie, He did 2 tours of duty in Viet Nam. Yes he is young for all of this.
Wanda
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echo echo echo - I hear the echo of all the things I think and do here - I just hope that by joining with each other we can have the strength not so much to 'carry on' but to 'survive' and thrive once we eventually get our own lives back. Hang on in there, I intend to!
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Just curious what war(s) did he serve in. He's so young to have been struck by strokes, dementia and AD. My father was in WWII and he had ptsd and depression.
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1. Don't feel guilty (if you can) You're only human, not some freakin' "Super-Saint"...

2. Don't know your siblings, but if they're not helping you and supporting you then shame on them! They should feel guilty!

3. It IS okay to think about yourself. You can't help anyone if you're dead of flat on your back in an ER with a heart attack.

4. I don't know if you're a saint, but certainly a decent, caring individual! (and if you're like the rest of us, a little bit of a naive, gullible doormat - use this as an opportunity to wise up and get tough! [I tell myself the same thing])
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Hi, I am new to this thread. I am caregiver to my husband. He is 66 and acts like
an 11 year old. He had strokes in 2005. Phys. he gets around good but strokes affected him mentally. He now has frontal vascular dementia/ azd. He also has seizures from brain injury in wartime. He can be a real hand full.
I understand all that the others are dealing with. Wanda
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Terrimerritts, if you are basing who I am and how I care for my mother on a frustrated and emotionally drained post, you are clueless. Apparently from reading others posts, many people have similar feelings. At least my first response to my mother's problems was to dump her in a nursing home as my brother would have me do. I know what kind of care she would receive in nursing home. That is not a slam against nursing homes either. The staff and nurses at nursing homes are over worked and underpaid. When society is willing to pay $100 million to a sports figure to play a game, but only pay minimum wage to those taking care of our elderly, something is terribly wrong. But that is another issue. I don't have to justify myself to you or anyone else.
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I'm a newbie, but have appreciated this site. There are 3 medically fragile family members that my sister and I have been assisting (our parents, and a mentally handicapped sibling). If one is in the hospital, we are spread too thin, not enough of us to go around. If we ask another sibling for help, we get the speech that if we didn't help so much that they would have to be institutionalized, and that's their excuse for not helping - not even occasionally. I understand your experience and often feel your same hopelessness. I am planning on contacting my local agency on aging. I think they have services that are based on ability to pay that we may be able to use to help us out. Your feelings are justified - do not feel guilty for having them. Hugs!
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You are suppose to be able to vent on this site. Venting to those who understand and listen and appreciate you. Often you really don't feel appreciated, or some days even a person. What you say here is a thought. I have no siblings, so I do not have that kind of rage. But I sure understand it. I do have a very strong faith in Christ. Blessings to all.
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Ooww. someone mentioned being called bad names.
I understand I am supposed to ignore the bad names.
I understand I am to Detach with Love.
But damn, when she calls me names it brings back my teenage years when I got so many mixed messages - you should dress nicer so the boys will like you/you have so much blush on you look like a hussy.
I am an adult, I understand this. She is in decline, I understand that. Sometimes people in decline lash out and who knows how to hurt you the most but your mother? But when she does this it brings back old memories and feelings I thought I had outgrown and gotten past. It goes down into that very sensitive place in me. ........
As someone already said, some of us have these problems because of abusive families and/or boundary issues in the family. I agree. I spent years in therapy to learn about boundary issues....... A lovely, clinical diagnosis, but what to actually do with that information today???????
The one program I really found helpful was Al-Anon. For the family of addicts. Al-Anon does not deal with the caretaker issues most of us have, but they do deal with the dysfunctional family, the emotional toll of living with family that does not communicate normally. Al-Anon is where I learned about Detachment with Love - a concept I still have trouble understanding, but I am better than I was 5 years ago. I have applied much of what I learned thru Al-Anon to my current relationship with Mom, but I think I have broken down (or, she has broken me down, but Al-Anon encourages me to avoid blaming others)
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Bless you Harleigh! We look forward to hearing that your family is supportive and that you find a wonderful alternative for Gramma. I applaud you for getting help and standing up for yourself! Take very good care and keep in touch!
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Thank you everyone for your wonderful supportive responses. It's nice to know and yet it's heart-tugging at the same time to understand that there are so many people out there who are exhausted caregivers like myself. It's so tough to take over the care of someone and keep yourself together. I'm sure you all have close friends and you know they really do help you keep you from jumping off a bridge, at least in my case. This week is a family sit-down to make a decision about gramma because everyone knows I've had enough and it's affecting my mental and physical health. I've become addicted to sleeping pills in order to shut my mind off at night enough so I can sleep and I need to go get some help. Bless you all so much! i'll be in touch
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Please do not feed into terri-whoever. She is like my sister. She likes to drop and bomb and then run. Last time she posted something i asked her some questions. she never answered them (running away). Undoubtedly is is troubled. We all know the truths. Ignore her please. I just reported her post.
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While I had worked in Nursing Homes over 5yrs as a Nurse, I was not prepared for how difficult it would become being the "24-7 Caregiver" with no time off or privacy or support. This site has been so helpful.- when I see others' experience situations and problems (which I had not previously been aware of),,I think "oh good, I'm not loosing my mind". Please keep making contact with your state and local agencies for elderly and disabled. Call hospice in your area. Contact your MD. Someone will finally give you the correct info on how to get homemaker, personal care worker or nurse to assist you. Call Am Cancer society which might be able to link you to anyother disease/illness agency which might have volunteers like Hospice programs..volunteers to stay with patient for 1-2hr so you can get out of the house. Some Church's have voluteers to visit sick-some even have volunteer nurses who do home visits. Please stay connected to this site and all of us ..give us updates of your attempts. Remember on a plane ..that first air mask must go on YOU!
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(PS To Victoria--I used to get called that even as a kid in high school and was chaste and a virgin and imagine your mother calling you such a heinous thing like that. It's sick and I could never imagine saying something like that to my daughter.)
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Well, don't know how you found us, but glad you did. You will feel better knowing that you are not alone in your feelings or thoughts and that there is no dosage of guilt here on this site, ONLY support--and hugs...God bless you, I feel your tension and pain in this and hope you find a little comfort here with us.
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All I am gonna say to terrimerritts is "what the heck"??? Can't you see that she is trying to vent a little, express her thoughts and feelings and you just slammed her?
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