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Over the last 15 years I've been a care giver for my elderly father who had dementia until he passed away a few years ago and I'm the sole care giver for my elderly mother who has dementia. Father God has been most kind to me blessing me mentally and physically for all of these years.

During this experience in care giving for my parents I must say that if I ever could not care for myself, that I would never want to be a burden upon my child or anyone else. I would rather die with dignity than being a demented shell of my former self ripping off diapers or throwing body waste at the walls. I say this because my elderly mother does just that. I spend so many early morning hours greeted with the smells of urine or solid waste as I try cleaning it off her and off the bed or wall where she sometimes throws it.

I just would never want to be such a burden on others. Am I the only one here at Aging care.com that feels this way?

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I told my kids if I ever act like my mother they have my permission to walk away. She was a narcissist through and through. No nursing home for her yet she dumped my gma in one. Threatened to call the police if I argued with her yet treated her mom abominably. Demanded I take care of her but said it was ok for my sister to not participate.
Our kids know where all documents are, know our wishes, etc. My daughter and I talk often about this. I pointed to her toddler boys and said they are the reason you are never to be my caregiver. I had my chance, now it is your time to live, enjoy your family. We all have to die and to prolong life to end up a burden is one of the worst things a parent can do to a child. Modern medicine is grand...up to a point
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I have made that desire very clear to my children, you will never be my caregiver. If I have to go into a NH so be it. Wish my mother had the same consideration for me, but she is from the generation of self entitlement where no sacrifice is too great for her creature comforts and care. Her finances are far better than mine and will be used for her entitled comfort and care wherever that might be except in my home.
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We also have long term care policies, all papers in place and explicit medical directives. My children would take care of us but we want them to be able to have the life with their children that we had with them. We are older parents and our kiddos will probably be in the mist of the teenage years when DH and I need care...don't want to spoil that fun for them!
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I am with pdahaven. You are so rightand that is what I tell my mother-I will not burden my child with taking care of me. I have a long term care policy and when the time comes that I no longer can ake care of myself but me in a facility. I do not wish this------- being a care giver 24/7 to anyone.
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How timely.
My sister in law was down for a visit a couple of weeks ago and we talked about this exact subject. We are both in our early 50's..........
.....Our conclusions, not in any order:.........................
-A proper will, and making my wishes known NOW to my children.
-A proper living will (mine according to my Church's teachings) and, again, making my wishes known NOW to my children and my family and my doctors.
-A DNR in place now, and making sure everyone knows this.
-Having all of our legal affairs in order all the time, including car titles/tags, life insurance, property titles, keep my bills paid in full each month, including credit card balances, taxes paid.......
-Work to get my funeral paid for now, including the casket, the plot, the Church, the flowers, the music, etc.. My sister in law prefers cremation and no church services.
...
I hadn't thought about stopping drugs when I am diagnosed with a terminal illness-very good idea........
..Treat me for pain, even if that medication shortens my life...........
.No tubes down my throat........
-Avoid poking me with needles, even if I die sooner.....
.........

.
Old people used to die from natural causes. When my grandmother died many years ago she just passed away in her sleep - she was 65. Mom chose chemotherapy and radiation, at age 82! Everyone dies, and while I am in no hurry to go, let me die so you can remember me/us as active, healthy and happy......Don't keep me alive so I can lie in a nursing home and have my diapers changed...........
.....
When God calls me home, let me go............
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Fotgot to add, use bed pads on your furniture. For Mother's comfort (easier for her to get up and down) I had 4" thick foam cut to 2/3 the length of one sofa and had it covered in a washable fabric. This is again wrapped in heavy beach type towel with waterproof bed pad on top.
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I have watched my mothers frustrations, shame and anger as the clock ticks down. To let go of control of her own life has been hard for her and hard to watch. She is 86, has had 5 back surgeries and is in chronic pain. This morning I was helping her shower and one again hurt myself. (I have also had many surgeries) I WILL NOT let that happen to me. I will self determine my time . I keep a copy of final exit in my books. I will not put my family or myself through that.
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We use Molicare Super Plus Briefs/Diapers all the time. Free delivery if ordered online from Walmart. They are pricey but the very BEST product there is..even if just used at night time. The XL holds 1600 cc and medium 1300cc.
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We all feel the same and think the same and want die with dignity..then WHY is there no bill before congress allowing assisted departure? It is not suicide when your motive is release you own pain and spare your loved ones a terrible burden. We are kinder to our pets than we are to our family.
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to JudymW, more power to you! i get tired of the sanctimonious people who believe the only way to take care of parents is by themselves and in their home.

people live way too long these days, and in far worse physical and mental shape than many decades and centuries ago when this was the norm. nursing homes, assisted living, board & care; these are there for a darned good reason and should be used before people destroy their marriages and children. guilt be damned!

i and my sister refuse to take my mother in, and my brother moved out of state forty years ago to make certain he never would have to. you should never have to take care of someone who is toxic to your emotional well being. i don't care if they changed your diapers and fed you as a baby, it amounts to absolutely ZERO next to years of emotional and sometimes physical abuse.

my children love me and i intend to see that they love me forever by never being a burden.
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WOW. it never would have occurred to me that people would be so STUPID as to think to duct tape the diaper directly to the skin. MY GOD, how screwed up do people have to be to come up with that?

OF COURSE NOT! and, just in case anyone here is actually that stupid, you DUCT TAPE THE DIAPER TOGETHER. it NEVER touches the skin.

DUH.

(not to you manyblessings, but to any idiots who may inhabit this site)
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My grandmother lived with us when I was growing up. It was so difficult. A nightmare of embarrassment - sickening behaviors and smells. I couldn't comfortably have friends over like the other kids. I learned to despise her and resent her, interrupting my sleep at night so I walked through school like a zombie, making the house disgusting with her messes and vile habits and stench. Tell me what the positive side of care giving is when the kids subjected to it suffer and end up loathing the grandparent? My friends would say, when we'd plan to meet or play "not at Judy's house - her grandmother is there". Wow. I'd never do that to my grandchildren. I told my husband that I'd take us both out before we burden and disgust our children and grandchildren. My parents are mid/late 80's. I'll never have them live with me. I go to their house and help out and shop and take them wherever they need to go. I try to make things fun and to also give them dignity and act like I LIKE being there, when I don't. When the time comes that they can't be left alone, they won't be coming to my house. So, judge me, pray to Jesus for my soul, pat yourselves on the backs for being better people than me, but I know my limits. I can't stand it when people compare raising babies to taking care of old people. Babies grow up and become more independent. There's a window of time for diapers. With old people, they don't grow more independent. They go backwards. Babyhood last a few years. Dementia and depends can last decades. So, please, don't tell me that my mother changed my diaper and I can change hers. That's not even reasonable. So, I totally understand never wanting to burden my children with being my caregiver. I'd rather kill myself than subject my daughter to my diapers.
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This might sound like a DUH……however……….when you are posting about duct taping children and the elderly into diapers, it is probably a wise suggestion to give a little more in-depth explanation on the actual procedure. Like DON’T PUT THE TAPE DIRECTLY ON THE SKIN!!! I know, I know, a duh, but there are those out there who actually would duct tape them directly to someone’s skin to keep them on. That is why lawyers are making a fortune with lawsuits over hot coffee spilled in laps. DUH. So, it might be beneficial for you to give the details of the method you used……………and PLEASE!!! DON’T tell us you duct taped them to the skin! Plus, don’t pull the tape so tight that it creates excess pressure or creases that will lead to sores on delicate skin. Just a suggestion if you resort to the duct tape method. However, there might be alternative solutions to look into first. I didn’t have this problem, so I don’t have another viable offering, maybe others out there do.

I just deal with the urine incontinence, his sitting in wet pants on our good furniture and Depends left laying everywhere in his room and bathroom. Then wondering how clean the hands are that touch them and then touch the food in the refrigerator, doorknobs and other common areas. EWE!!! Makes my stomach turn and skin crawl when I think of it, especially with my two-year-old grandson touching same. The fragrance is lovely and we can’t keep ahead of it or afford to have the rugs professionally scrubbed every week. Any suggestions about this issue would be greatly appreciated, as well. I have thought of duct taping parts too. NO!! Just kidding!! However, it is a very frustrating problem and poses immense health concerns. Stock in Lysol wipes, alcohol (both “medicinal” kinds) and latex gloves must be skyrocketing from my purchases alone!
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Duct Taping the diaper is a perfectly reasonable idea. My DDiL had to do it when one of my grandchildren kept taking of his, and pooping on the floor during nap times. She had tried zipping him into his jammies backwards, but he and his sister began helping each other with the zippers, LOL!
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You r not alone on feeling like this n I am a caregiver as well for my mil. I also already have several health issues but do pretty good most of the time. However, I wouldn't won't to be a burden as well on anyone. I guess that is why I keep searching for longterm insurance that not going to cost litterly an arm/leg but that don't look like its going to happen so I just hope I just die fast n quick. Probable pretty much what everyone wants as well. However, we don't know when r time is to go n how it will go so, I try not to dwell on for it will just make me sick.

Rainsage, I amnot familiar with your whole situation but have you consider putting your mom in NH? You should not go through this if it taking such a toll on your life n it does seem that way. You can only do so much n you have your own life to live as well. Or, Do you have any other relatives that you can trust or that will even offer some help if you ask them. Sometimes you just have to let them know you need help for they will let you do it all if you don't speak up n sometimes that don't help. But hey, it worth a shot. What about getting some respite care for that will make a big difference even if its a few hrs a wk. IWe all know how demanding caregiving can be n you r a true caregiving person for you already helped your dad up to his passing n I am sorry for your loss. I do understand what u r saying n I would not wont to be a burden on anyone either. Here something to help you a bit, I had to clean poopy off the toilet paper handle n on the toliet bowl handle n a few nice brown turds on the floor a while back. I also had to tear apart the bedroom where the mil is staying one day for I kept smelling a foul odor of stinky, stanky piss! I finally found it where she had hidden it in a large cup between bed n wall. Yep! it had only about 1/3 c of pee in it for the rest was meldew in it n the other part must had tumble over n ran down the wall n on the carpet under bed. so I had a huge mess. I did go off on her for this was when I was in my early stage as a caregiver. Now, from the friends on this site, I undestand a bit more sometimes that she cannot help herself. I learn to take all cups, bowls or anything that can hold urine n put a light in hallway n I leave on a light in bedroom. However, for you it sounds like she cannot hold hers or not sure the deal of throwing it n she probable don't know either unless she feels a bit embarrsed for I don't know your mom. Have you tried some pull up that may be more descreetful? Just a thought. I hope you can find a solution to the flying poopy diaper. All u can do sometimes is find humor to get going on and move forward n breathe.
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I lot of us feel like you do. Some of us realize it's time to get out of, or limit our exposure to the craziness before it's too late. Your mom needs to be on medication as stated above. You might already have a good home delivery of diapers but if not I use http://www.theincontinencestore.com. In one of these forums I read about someone who duct taped the diapers on - sounds mean but it'll be the last time you clean up stuff off the walls too. As you have seen with your dad, your mom isn't going to get young again. You need to do what you can to make things tolerable for you.
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Even on the worst of days, my Dad always tells me how thankful he is that I came to help him. It makes even the worst day a little better. Every night he makes sure to tell me Good Night, sleep tight, see you in the mornings light. Don't let the bedie bugs bite. This makes me smile, even if he has made so mad over taking a shower. So being here with him during these last years, will be worth it all.
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I am new at this caring for my father, who is 81 years old, who has been diagnosed with dementia/early Alzheimer's. We are selling our home in Missouri to relocate in Arizona where my father lives. I also care for my 7 year old granddaughter with Autism. I did this for a year by myself until my husband got here. I often ask my Dad "Who are you and what did you do with my Dad?" Reading this posts help in knowing I'm not the only one. I will keep my Dad here at home as long as possible, for his health is good. I've had to educate family members and friends on the many aspects of Alzheimer's and Autism. I'm still learning about Alzheimer's and Autism, because no two people with these issues are the same. It helps venting sometimes to people who can see whats going on.
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There are so many caring, kind, capable PCA's working in nursing homes and ALs. It shouldn't be assumed that abusive workers are commonplace. In all but the worst facilities (and you'll know one of them when you see it), employees like that are sniffed out by management and fired pretty quickly. I don't want to hear a deluge of horror stories about awful healthcare workers. I know it happens, but it is certainly not the norm.
I, too, would never want to be cared for by my children. The idea that it's "what our parents did" is ridiculous. In "our parent's day" the elderly were not kept limping along as empty shells of themselves, kept alive by dozens of prescriptions and medical interventions. Nowadays, most of us are denied a dignified death. I'm always stunned by the number of non-palliative drugs that some advanced demential patients are taking; heart, cholesterol, blood pressure, etc. Even with a medical directive, it's hard to guarantee yourself a graceful ending to your life.
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I feel lthe way you do. I have told both my kids I will not come live with either of them and have them end up hating me. I want to leave this life at least thinking they liked me a little. I've asked them to place me in a home, or give me my pills and tell me, " it's time to take all your pills". I will not do to my kids what's being done to me. I've become a bitter, hateful old woman who looks 10 years older than I should already.
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RaineSage, I don't get it. You would never want to be a burden to someone else like this. Do you not credit your mother with the same sentiment? Why isn't she in a nursing home? If you mother were in her right mind, would she really want this for you?

Personally, I think you should honor her best intentions, and get yourself out from under the worst of the physical burdens.
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Bless you terrimerritts for your giving nature and all the love and care you so generously shower on your family. It is rare, especially in this day and age, to find someone who not only feels as you, but who has the financial, physical and mental stamina to give to that extent.

I also care for my two-year-old grandson, along with my f-i-l everyday. And, believe me, even though I love them with all my heart and soul, there are days I get rather beaten down and want just a few days respite to call my soul my own. IMHO, you are super human and a saint to have the resilience and strength to maintain such an upbeat attitude. I hope your children are just like you, but so often, they don’t feel the same and are not as enthusiastic about changing your diapers and giving up their lives as you have been for your elders and children.

The world needs more people like you. I wish I could feel that way 24/7, but the best I can do is vent on this site, take a deep breath, put a smile back on my face and go back to giving them the loving and giving they deserve.

God bless you, but I know He already is.
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depakote is a VERY strong drug. it's used for seizures and psychosis, and some bipolors. do not recommend it randomly please. my mother was placed on it for no real reason and it caused MANY MANY more problems than she ever had before it was given. it's a central nervous system depressant and can cause falls, especially when used in conjunction with other medications. my mother fell many times. on the last two falls she broke her foot, and then her tibia in the opposite leg.

in fact, NO ONE here should ever recommend a drug. even if you are a doctor or a pharmacist, you still do not know the patient in question. at most we should only suggest seeing a doctor.
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I feel differently. I have cared for children and also for my parents, grandparents and in-laws. It was a joy to repay them for all the care they once gave to me as a child and all the love. I grew emotionally as a result of learning to selflessly care for another's most basic needs and felt a closeness to them I otherwise would never have experienced. It was an honor to love them this way. I would never trade this experience. It is a way of showing love that sticking someone in a nursing home can never rival. As they cared for me when I was helpless, so I cared for them. I know my own would do the same for me if I got into those circumstances and I would prefer to be at home and loved and cared for by the children whose diapers I changed and who I cared for. That is what FAMILY means. I respect those cultures where Grandma is not disposed of as an inconvenience.
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Manyblessings, wow 15 years, unbelievable, bless you! Our parents also, took care of theirs, but no dementia involved. My Mom could still go out and leave her mom, her mom was good till the end. I often wonder what causes this and I do wonder hard if its these damn cholesterol drugs, something IS doing it, I told my own dr I didnt want cholesterol drugs and he said I could have a heart attack, my reply was "and in my book that just might be better than dementia." I gave in and take them 3 times a week, not 7, and my cholesterol is the same no matter how many I take so, so be it right?
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Ohhh boy, I sooo agree about not wanting to be a burden to my children. We have cared for 3 parents in our home the past 15 years. Each right after the other, suffering from dementia and all the accompanying clean up issues. I wouldn’t wish this life on anyone. We are on the last parent. We are totally and completely burned out, physically, mentally, financially, plus, our beautiful home shows the wear and tear. Both of us are in our 60’s and have missed our “golden years” while caring for parents. We looked forward to the empty nester years of freedom, travel and just the two of us again. Our parents lived the good life of travel and fun when they were in there 50’s, 60’s and even their 70’s because their parents were all gone. We have been locked here 24/7 caring for each of them.

Don’t get me wrong, we deeply, deeply, love our parents and couldn’t begin think of not caring for them, yet it is a struggle I wouldn’t wish on my children. However, our parents didn’t ask, or want, to be like they are either, nor do they want to be tossed in a home of strangers. Like my F-I-L terms it, those are places for the “throwaway society”.

There are many positive issues to all the wonderful advances and medical technology of today, but, I honestly feel it is cruel to all concerned, especially the patient, to allow a life to drag on and on with no hope as so many do today. Dementia is such a long and ugly, ugly disease. Watching those you love slowly and sadly slide down Dementia Mountain, knowing their life will never, ever get better, only worse and worse with each passing day, is horrific. What decent quality of life is there sitting as a vegetable in a nursing home or destroying the lives of your children financially, physically and mentally? It is cruel, and I think, at a certain age, when God tries to call us home, He should be allowed to do so instead of performing all these heroic measures.

God bless all of those giving of themselves and their lives to care for those they love. I have been told there is a special place in Heaven for the caregivers. Probably the place with the padded walls.

Many, many times I have told my children, "If I EVER get like that, just shoot me!!" Funny thing, I often times think I hear a gun cocking.

Prayers and hugs to all of you giving so much for those you love.
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PS throwing feces, making meatballs, etc, I hear is common in NH's before the medicate them. My Mom used to get up , drop her pants and pee on the floor. There IS medication to calm their brain (depakote) so please call your dr. I went thru a year of Hell and no sleep also, wasnt worth it when there are meds. If they go to a NH they will medicate them so why not do it at home. Believe it or not, they are happier ON drugs then off them, they dont want to be the way they are either, they just cannnot help it, as you know I am sure..
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Rainesage, bless you for so many years of caregiving:). I also take care of my Mom who is in late stage AD and have discussed this with my adult children who do not want us in a NH either. I have sometimes cried and said I do NOT want this to happen to them, to be stuck with me!!! I tell them to put me away!! We have seen the lack of care from caretakers I hire just to go out, and a NH is even worse by far. Its a lot of work to find a good caregiver!! We have learned from this experience. Due to our strong close family relationship, the best thing to do is to sell all assets and use that for our care at home. For example, I sold moms assets and used it for her to have the best of care from myself and a cna I chose. After over 31/2 years of myself doing it fulltime, I hired a weekend person and I try to now consider my loving mom a "fulltime job" with weekends off which makes it so much more do able. But, caregivers call in sick often, arent as good, and I live with guilt when I go out, but I HAVE to do it, or I will crack .I still do the morning bathing, etc, but its still a nice break to go out . My Mom was the most independent person on earth and asked me to please shoot her if she ever cuoldnt live alone, we had more laughs over it, and yet what happens, she comes down with dementia! (of all people!) I could never put her in a NH and although its hard work and we are tied down, when she gives me a laugh and a glimpse of the old her comes thru, its all worth it. As severe as she is, she still knows how to Kiss when I ask her for one, shes precious and if we cannot afford long term health insurance, we do have homes, etc, that our families can sell. At home care is best, no matter what anyone wants to think, its a lonely disease and it means the world to them to just have us hold their hand and sing to them. If our kids see this, how can they put us in a NH, they cant, they are nurtured from watching what we do, so no matter we say, they more than likely will do what we do, keep up the good work.
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i would rather die than be anything like my mother. in fact my sister and i have a pact. if either of us gets this way, we are to take the other out to the mountains on a cold and snowy night hike, get drunk together, leave the other with a nice bottle of Krakin rum and walk away. drunken hypothermia is a very pleasant way to go. trust me, i know, and yes i am perfectly serious. i don't know if she'll have the courage to do it for me, but i know she'll tell me if i'm off my rocker and i DO have the courage to do it for myself. i refuse to burden my kids.
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RaineSage: You are not alone in feeling this way. In the four years of caring for my mom with Alzheimers and dementia, I often thought how I could avoid making my two children responsible for caring for me in my later years. One step I highly recommend is planning for old age financially, including purchasing Long Term Care Insurance. I practically drained all of my financial resources caring for my mom, since she (like many of her generation) did not plan to live 30+ years beyond retirement. Also, keep your will up to date as well as a power of attorney. Also, be specific about what medical care you do and do not want as you get older. We never know what the future will hold, but we can plan as best we can. My financial advisor tells me that women of my age (57) can plan to live to 97!
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