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It makes my heart sad to hear about so much pain. Sometimes families are very dysfunctional. Thank God there are some family members who manage to care for their aging and ailing folks.
I work with families who struggle with these issues. Often a third party facilitator can bring around struggling siblings to create a team who supports each other in a variety of ways.
One extremely important ingredient in the caregiving family mix is appreciation. When everyone is pulling in their own direction, appreciation is lost along the way.
Kudos to each of you who have stepped up to the difficult plate of caregiving, whether as care manager or direct care giver. It is a job of the caring spirit. You are providing a caring example for the next generation.
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I am so glad you all have responded to my question/vent session!!! We have all have grown, bigger hearts and a true understanding of unimaginable care duties and we face whatever has been thrown at us. We all know what it takes and we are the ones who care!!! It is always good to have people in the same perspective even if it's not family. Hugs to you all!!!
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Tonaway's comment about their meanness and arrogance is jealousy, how many of you have had the offenders turn around and use the excuse that you are jealous of them
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This has been sitting under my nose and I don't know whay I didn't say anything sooner-guess I was focused on dad so much I forgot. 25 years ago I was blessed with a little girl. When I say little I mean preemie. She weighed less than 2 lbs. I never saw a preemie before. I thought they were just tiny babies and they are but they have no fat stores so they sort of look like a skinned frog. And when I saw her with needles in her head and a breathing tube down her throat I almost fainted. I touched her little match stick fingers and they latched on to my intex finger with surprising strength and this feeling of love just traveled up my finger and arm and to my heart. We bonded immediately. I was there night and day sitting next to her warmer as much as they wouold let me. Besides my husband no one else ever came to visit us. They had to go thru a process of washing up and putting on a paper gown and it was too much for them. She was in the Neo Natal unit for exactly 120 days. She came home with a tracheostomy-a hole in her throat and a breathing tube. At 4 mos old she still weighed less than 5 lbs and my husband and I were shocked that our family and friends shunned us like the plague. Only our parents offered us support. Until her trach came out at 4 years and six months after a dozen surgeries trying to fix a narrow airway we never had a relative step up to learn how to suction her so that we could just have a break together for a few hours. No one wanted to learn how to perform CPR on an infant. It was around the time that the Aids epidemic pretty well captured all the headlines and people were afraid of anyone they thought was not well.. We took her with us everywhere and she had to be "bulobed) often. You know the blue bulb that we sometimes have to insert in a childs nose to clear it when they are stuffy? She needed this done often so restaurants would notice and ask us to move to the corner booth way away from anyone else. But the hardest part was when our daughter startd noticing there was a world outside mom and dad. She wanted to play with other children and her doctors said no. No because they didn't want her to catch the common cold and viruses children carry. Her aunts and uncles shunned us. and we even heard whisperings and words like pitiful and, "she will never make it" when we saw them at family reunions and other get togethers. Again we were treated like lepers. I asked my brother and sisters if they would take a course at our expense just so we could have a few hours tro ourselves while they baby sat but we heard every excuse in the book. Our daughter survived and is now in college. Now her cousins and aunts and uncles shower her with gifts and attention. Call her "their" miracle niece. I can't not resent them. My daughter doesn't remember her exile and I even blame them for my divorce. We could not afford to hire a professional care giver and I'm not sure I would trust one until after she had her trach removed. We took shifts caring for her and because of the medical bills it took us years t recover financially. My husband would say: If she ever gets her trach out I am leaving you! I must have heard that for 4 solid years every day. Now when my daughter spends time with these aunts and her cousins I resent it? Am I wrong? Do I tell my daughter how they shunned her for the 1st four years of her life? Virtually caused our divorce because we had no love life.
Sorry if this is slightly off topic. Since Meno passed I have been building up with resentment because this was how they treated him and me all over again.
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I wouldn't tell her..what purpose would it serve or how would she benefit from this knowledge! So sorry you had to go through all that; but what a blessing to now have a healthy daughter going to college. Lots of love and dedication got you both to this point. I can't imagine the stress and sleepless nights you experienced.

Quite frankly, I don't know that I would have been of help to you, other than bringing meals and running errands. The responsibility of such a tiny fragile life would have a lot for me 25 years ago. Your husband is the real loser here!
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you are right littletonway-I just get jealous sometimes when I hear my daughters Aunts and uncles say Our or My little miracle baby-look at her now! I think-well, maybe if you'd have cared enough to learn infant Cpr and suctioning, you could have baby sat so husband and I could go to a movie or just to get away for an hour or two together or to dinner out without baby on an anniversary. I slept in her room for the first four years of her life afraid she would stop breathing or her trach would clog up-more than once I had to change trach tubes in the middle of the night with a blue baby because the tube she had would get a plug- hard to do with child fighting for air and husband sleeping in another room but we got through it. Yes my ex turned out to be the loser-he left us for parts unknown and returned on her graduation from high school-never paid a dime child support either. She wanted nothing to do with him. Shortly before my mother passed I adopted two children- 8 and 5-then dad had a stroke while undergoing chemo and mother went into V-Fib while jogging and she was in Hospice a year before she passed. I took care of dad and my children-again without family support-well very little. They thought I was selfish to not put dad in a nursing home because they didn't think I could care for the children but it turned out he was for the most part just a big kid and they-my children miss him terribly. Since we are financially able I am making it my new career to be a part time care giver and a full time mother. My goal is to eventually own my own care facility and approach treating the elderly as humanely as possible. I learned so much caring for my dad. The biggest lesson was if I had left him in that home he would have been just another ghost in a chair or a bed. I found I could reach him by trial and error and we discovered that while parts of his brain were shrinking and dying the parts of his brain that we all have and don't use were switching on-responding if you will to other methods of stimulation.
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Read the book Boundaries, it changed my life.
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Nice remarks Caryngulas. You are inspiring! And your mentor is very wise. Caregiving has been my life, in one form or another. Now with aging parents it is so true in how one views their family members differently, as well as getting tuff skinned.
If they don't want to do it, they dump it. If they don't like what you do they either talk behind your back or they don't talk to you at all. Just as well. I will remember for whom much has been given, much is required. Thank you for sharing that. :)
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OK, this broke the 'dam' & I must be releasing 'cause I am just bawling! I am the only functional, [my youngest brother has special needs…] sibling in town. Get this, my other brother is a DOCTOR & my sister is bi-polar. My youngest brother does [lovingly] come by and mow the lawn, however—my sister who SQUAWKS the loudest—especially when not managing her meds & manic, REFUSES to acknowledge my energy & efforts towards assisting/honey-do's @ my mother's home. Today, I climbed up in the attic to replace the AC filter, I have painted & redecorated my mother's living room while she was on vacation, dusted the ceiling fans, covered the lawn while the crazies in Dallas spray unwittingly for West Nile. I am also collecting bids for home & lawn/yard improvement [tree-trimming, lot leveling, seeding grass etc…] which will come directly out of my pocket [I know BETTER than to even ask…]. I have put in front/back railings, summerized/winterized the house AND SO ON!!!! Yet they target me as some form of physically abusive pariah!!!!!! This has [finally] manifested as complete estrangement from these two siblings which has also disallowed [my brother's doing] contact w/my 2 nephews WHICH BREAKS MY HEART!!!!!!!!!!!! I have also made arrangements to revise my will to redirect my $$ to my sister's stepsons who have ABSOLUTELY NOTHING to do w/her [hmmmmmmmm???]. I do but, I don't understand what one responder pegged as 'outshining' [and jealousy!] and the ensuing, targeted anger—I work w/handicapped adults as my profession & have a fabulous, largely Down Syndrome family of choice that lifts my wings DAILY! So, TO EACH & EVERY ONE OF YOU who have responded to this posting—as well as the plethora of those who have yet to discover this forum—you are more precious than fine ore & FULLY RECOGNIZED right here, right now!!!!!! You are ALL doing the right thing! Much Peace & Love to you ALL!!!! And thank you all for posting & sharing—we need 'each other' and the healthy validation thereof!!!
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P.S. Have the book 'Boundaries' and MUST read it sooner than later—thank you for the reminder! This all happens fro a reason…
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BE ASHAMED TO DIE TILL YOU HAVE WON SOME VICTORY FOR HUMANITY!!!
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Is the book Boundaries typed in small letters? I had recently ordered the book "The 36-Hour Day". I opened up the book, the pages were off-colored and small letters. Just looking at it and my eyes started hurting. If I had known this about the book, I would have ordered the Ebook version. I prefer real books so that I can highlight notes that I like or need to work on, etc... But, I'd like to know if Boundaries wordings are easy on the eyes. Thanks!
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Yup, I get treated appallingly by my family. I have two brothers, one screams abuse at me when he visits because the house isn't clean/tidy and we don't have a suite of rooms set aside for his own personal use.
The other one turns up on the doorstep unannounced (meaning I can't sneak off for the day and leave him in charge), does nothing to help, and if something happens when he's there, he doesn't come back for 6 months...
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The first brother should offer to hire a cleaning service for you and they should both call before arriving at your doorstep...you are not a public building open 24/7. Wish I had kinder words of wisdom but after a year of dealing with my siblings we had to set curfew for visiting and letting me know well ahead of time before their arrival. It is your home and you are the boss!
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RE: Boundaries, small type…It is reader-friendly to me. The type size appears to be a healthy 12pt w/nice, spacious kerning & leading [spacing between letters & lines—I'm a graphics person] so that in my opinion there is minimal stress on the eyes. Great Luck!
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The whole "outshining" them is right on the money. They think if someone else is doing the care then it makes them look bad. Why can't they just help out in their own way and shut up about it? My family members have painted this completely false picture of what is going on even to their children. Their kids now see them as victims and why? Because my parents moved into my home, both in their upper 80's? When I told them that they could take them at their home if they wanted to all I got was dead silence on the phone. A nursing home was where they thought they should be. One sibling said they were personally offended because my mother had made me her healthcare surrogate after my dad died and had removed them from the role. "Do you mean to tell me that you didn't convince mom to do that?" That's how I was asked. My response was, "YES....i'm not caretaking for my parents in MY home and have another family member who lives out of state calling the shots." I was then told that I had nearly been sued over it and that I was a liar, manipulater...oh and that I was mentally ill. That's how ugly it can get people. People that I thought loved me and loved my mother have acted like selfish pigs. It's a tough thing to get past. I probably never will. Their meanness and immaturity is more than I am willing to tolerate. I'll do it while my mother is still here, but after that they can all go be miserable somewhere else without me!
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My x-sister and her evil husband plotted the unthinkable in my family. Lured me and mom to Florida to wind up abusing us and stealing all of moms money by committing financial fraud on my mom. They had the Gall to keep conning mom to sign huge wads of money so they could buy up real estate. My evil x-sister actually conned mom into signing a check for over $60,000 then four months later visits an unethical attorney who helps my x-sister gain all power by becoming an ABUSIVE POWER OF ATTORNEY. Together this attorney fails to submit moms full financial banking disclosures to Medicaid. Medicaid itself doesn't do a verification and takes the word of this EVIL ATTORNEY. I caught this mess and turned them into every agency. My x-sister could not have been meaner to me. She made up so many outrageous lies about me. All the nasty stuff she was doing. Their plot was to get mom dumped into a horribly run nursing facility and have the state pick up the tab while they embezzled all her money. The creep x-sister acted like moms money was her money. They were trying to break me in case I ever put this plot together. After mom died and they abused the crap out of her. Please I tried in vane to save my mom. It's exhausting to list all the things I did. Honestly sometimes things are just totally out of your hands. These were real professional thieves and elder abusers who plotted this for years. They ganged up on me and denied me my share of moms money mom wanted me to have like $50,000. That would have been life changing for me but they are scavengers and spent All of moms money two months before mom passed. The law makers in Florida better wake up and realize it is the unethical attorneys who are ruining this country. They think they are SLICK and no one can figure these plots out. The lawyers own paralegal told me my x-sister was asking this attorney how to get moms house paid for and valued at $200,000 in her name alone. Boy if that's not out and out stealing from an elderly person than I don't know what is. Instead of calling in authorities to stop the madness she continues to help the creeps with business as usual. Yes, my x-sister could not have treated me more inhumane. I had just lost my precious mom and she sends me a bogus letter that I owed the estate $25,000. When I went to look for cancelled checks I paid mom back I found, guess what a cancelled check for you guessed it, $25,000 three years earlier she conned mom out of. You never know how really EVIL family is until a close family member dies. My x-sister is the worlds biggest creep. She found moms will and ignored it and probably ripped it up. Mom told me she had one and wanted everything equal. Let's forget about that and lets talk about the denial of antibiotics for swollen ankles and prescription eye drops for an eye infection or x-rays to see what was going on in moms chest. All denied by the BIG S%IT IN CHARGE! None of which raised a red flag in the Parks nursing home on Orange Blossom Trail in Orlando. Don't ever consider putting a loved one there. That is a true HOUSE OF HORRORS! Me and brother do NOT have anything to do with these evil x-family members. They are GREEDY, SELFISH SLOBS with their real estate valued at $600,000 thanks to my poor mom. May she rest in peace. The real estate lost half it's value in Florida so good for the creep. She once had over a million dollars worth. That was her goal and she didn't care how or why she got it or who she trampled on to get it. How would you like to have family like that??? She lied to my brother and said she paid a $30,000 nursing home bill. There was No bill the stupid state of Florida picked up the Tab. My mom had a $400,000 estate. Two hundred thousand in the bank and two hundred thousand in real estate. I'm an outraged tax paying citizen. Shame on Florida allowing this outrageous ABUSE to happen to innocent seniors.
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