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laurielovesma....i can't get my dad on antidepressents...but when i did a few years back...it reeeaaally helped a lot! have you tried that? i think my dad has given up also...but it makes my life so much harder because it's a constant struggle for me to want to help him!!
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Refusing personal hygiene is a sign of cognitive decline and depression. Depression is treatable. Cognitive decline/dementia is only going to get worse, never better. Both together is going to be very challenging.

If your loved one needs help with personal hygiene, it may be worth the cost to bring in outside help to do the bathing and changing. While mom/dad are distracted, you can gather up the laundry and do it or some other cleaning.

I question anybody who thinks changing a poopy adult diaper is no worse than changing a baby's. It's not even on the same planet. And when you have an adult who is combative during the process, well....you might need a full body hazmat suit with respirator to get through it. Ask a neighbor to meet you in the driveway to hose you down afterwards.
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I have been so overwhelmed lately with being 'grossed out' by both my elderly parents. ...Mom has Alzheimers and Dad starting dementia and both have many other medical conditions. It is alarming to me how bad ones hygiene can turn 'bad' , of which I am grossed out about. As I look back on when I was growing up, I have realized that both Dad and Mom did alot of 'shortcuts' in hygiene-and that I thought I did alot of 'extra' hygiene when I had left home...I thought I was being obsessive-compulsive about being clean, but now I know they were never really clean people and that I was really okay !!! So, is hard to change their habits after so many years so I do the best I can...same thing with their housecleaning; bathroom, kitchen and the food in the refrigerator...I've introduced Mom to tupperware to store leftovers instead of letting food get creepy and goopy uncovered on a plate, clean the bathroom from top to bottom more often, flush the toilet after each use (yes, really they wouldn't !!!) and I can't even watch them eat anymore !!! They re-use glasses to drink out of the entire day, and may even use again the next day...it's gross, unappealing and alarming to me...I used to be very verbal about it, but they think I'm overreacting and they do what they want anyways...I could write a book about all the gross things they do but I'm sure so can everyone else. I know I need to be careful how I react in front of my son because I'm sure one day he'll need to help me out as I get older...but wow, it is hard !!! I don't complain anymore to Dad and Mom I really don't want to hurt their feelings since this is all that they've ever known, but YUCK !!! As their conditions worsen, I know it'll only be worse...eventually they both will be going into assisted living to be taken care of round the clock, since it is very stressful to see this continue...it's part their habits, their age and their conditions...I love them both and will bite my tongue as much as I can and just manage the rest as best I can ....
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Can't even imagine having two parents with DA. I think an assisted living would be good. Start looking now, there are waiting lists. Don't wait till they r really bad.
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I was so grieved by a couple of the comments above. Everybody is going to grow old someday and nobody is going to get out of this world alive. How sad that a couple of people here can't seem to relate to elderly, suffering people. Some day they themselves may need care and concern, and if they don't set a good example for their children now by their behavior towards the unfortunate elderly in their family, they can expect their children to recoil from them, too. What a shame.
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One blessing of this site is it's a safe and supportive place to vent about the aspects of caregiving nobody on the outside could possibly fathom. This site is the only place some of us can come to get it out of our system and keep up the brave face otherwise.

Being grossed out is a natural reaction and very few people aren't, so there's no sense acting like it's odd or mistaken to have a natural reaction, or pretend it's pleasant and dignified. Every person doing caregiving of any stripe or variety has to be honest with themselves about their limits.

We can drive ourselves crazy with "shoulds" and "ought to" and "what must others think". These are not the motivators of good quality care. Yes, we will all get old and die, but not everyone is cut out for caregiving. Not everyone is cut out for parenthood either, and will have children for the purpose of future caregiving.

I already expect that when I am very old I will probably be gross too. I hope that I'm not aware of it so I don't have to be embarrassed. I don't expect my kids to pretend it's not gross & unpleasant and I hope they bring in the help that's needed to do those care tasks for me to spare themselves.
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I totally agree with Sandwich42. Kseale and willow: In theory I understand that we should strive to be compassionate, selfless providers, but I think your tone is exactly what you condemn: judging and critical.
The guilt of feeling these things is tremendous. I find myself increasingly disgusted by some of the habits my mother is developing, yet I've never been able to verbalize it. Shame on you for shaming the people who are simply trying to find out if their feelings of disgust are normal. I agree that we should all strive to be compassionate selfless beings in the care of our loved ones, but the reality is that we all have disgusting sounds and smells at times. None of us would be human if we pretended to enjoy the more difficult aspects of care-taking. Please keep your lofty judgements to yourselves. This is a forum for venting, not public shaming.
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To the original poster, Notevenmymom: Yes, I have moments when I fear I will go mad, yet I've never been able to talk to anyone about it. I'm glad you were brave enough to bring this question up. I do not let my mother know how much some of her "tics" are bothering me, so it's good to have a place to vent. Specifically, there is a lot of lipsmacking in the car when I am driving her places, then there is the hacking cough that sounds like she's trying to bring up a hairball. When I express concern about the cough, she brushes it off. I thought about trying to have her evaluated by the doctor, but since it's intermittent, she will deny that there is a problem if I mention it to the MD. Another annoying habit that she has developed is that when she eats cereal, she clangs the spoon on the side of the bowl at least six times with every bite. I go into another room so that I don't have to hear it, but I feel terrible for feeling so annoyed. Believe me, I always try to remind myself of all the ways in which she took care of me when I was annoying, but it really is difficult at times. To add insult to the picture, she has never been very kind or accepting of me, either. There are many, many developing problems that are nothing but just plain sad. Thanks for raising the question.
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Admitting the things that annoy us is no crime. I find that if I express myself about it, it's not so bad. A burden shared is a burden halved, they say. When we share our burdens with one another it isn't just pointless griping. It helps some see their situation could be so much worse. It helps people connect to information and actions that will help make it better.

Kristen3 - My mom has always sucked her teeth. She would also very slowly drag her spoon around in a bowl of ice cream (or whatever) and make this mega-grating scraping noise over and over and over. It was like fingernails on a chalkboard to me for my entire life. Scrrrrrr-aaaaa-pe, scrrrrrr-aaaaaaa-pe, scrrrrrrrr-aaaa-pe.

Your mom's cough could come from any number of things: allergies, dehydration, a side effect from meds, post-nasal drip, or something far more serious. If you have a smart phone, see if you can catch a video snippet of it happening so you can show it to the doctor.

She might stop smacking if she can suck on hard candy or a lollipop.
You have to use judgment on that to know if it's a choking risk or not.
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sandwich42plus!! How I love reading your answers...and I learn sooooo much from them!! I LOVE this site because only a caregiver could understand how difficult it really is!!! Most people that don't have experience with caretaking...DO NOT get it. They look at me like I'm the crazy one...when I express the toll it takes!! Thank god that people share with such HONESTY...this is what keeps me coming back to this site! What a blessing to have this post available to rid the demons in our heads!! KEEP IT HONEST, KEEP IT REAL!! THANKS for your contributions!
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I am appalled by the negative comments. I am thankful from the bottom of my heart that I raised my daughter and two sons to have the utmost compassion for the downtrodden and unfortunate both in and out of family. My daughter, son-in-law, and two teenage grandsons moved into the apartment upstairs last year. It was my daughter's idea because she knew her dad's dementia was only going to worsen and she wanted to be there for me and for him.

What is so wonderful is that she has raised her five children the same way I raised her and her two brothers. Two of my grandsons, ages 19 and 16, still live at home (upstairs). One is working, the other still in high school. We call the 19-year-old "The Papu Whisperer." (papu is Greek for grandpa) because he is a natural caregiver and has his papu eating out of his hand. I am first-generation Greek/American.

Every night, my 19-year-old grandson comes down to prepare his papu for bed. Both he and his 16-year-old brother have seen more than most boys their age see and have become members of a team that my daughter has organized so that my husband has the best of care, with seven caregivers who love him, care for him, and keep him clean as a whistle. Even the 16-year-old has had to deal, on occasion, with hygiene issues and never batted an eye. He did it willingly and lovingly. These grandsons of mine have their trial by fire. They will grow up into real manhood, and there will be very few things they will face in the future that will be able to compare with this heartbreak, but at the same time, a rich, wonderful experience that will carry them through remarkably no matter what else they might have to face in this life.

My daughter is my own private "Mary Poppins," I have a son-in-law, who is a prince, and two teenage grandsons who are the most loving, giving, caring young men I have ever known.

In addition, I have a son in Missouri and another an hour and a half away here in Illinois, and the one in Missouri comes up for four or five days every other month, and the younger son comes as often as his work will allow, and when they are here, they pitch in, and it's hands-on with their dad no matter what. My children, son-in-law and grandchildren love their dad/papu far too much to be "grossed out." God help those who look upon caregiving as a dirty chore rather than as the highest privilege imaginable.

I am truly blessed because I am surrounded by people who are too busy loving, caring, and giving to be "grossed out."
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Yes, I like that burden halved.
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Willows, I applaud you and yours. You are so lucky. It is a credit to you and how you have raised your children. Bravo!
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Willows, you are so lucky and sound like you gave and taught love what a wonderful family you have-can I adopt one or two...lol....you are blessed! : )
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Willows: Sometimes caregiving is not pretty. There is no reason for anyone to be appalled. People are just able to discuss their situations on this forum.
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Willows: I am very happy that you have such a tremendously responsible, loving family. However, I think you miss the point. In my comments about my own mother, I did not once say that I looked at it as a dirty chore, yet do admit to the difficulty of fostering patience. Try a lesson in compassion: if you were your husband's only caregiver, and without the help of your marvelous family, would you not feel a little bit more burdened? Some of us do not have the luxury of a large loving family. I am trying to take care of my mother alone, and do not have the benefit of wealth to pay for extra assistance. My younger sister died of breast cancer, my father died of an equally difficult drawnout disease. Try being less appalled and a little bit more compassionate to those who are not as fortunate as you.
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You sounded bitter as if you were holding your mother at arm's length, figuratively speaking, and you did use the phrase "grossed out." She is your mother, and I imagine she, too, must have been "grossed out" every now and then when she had to change your dirty, stinky diaper. She took care of you when you needed her, and now it is your turn to take care of her. If I didn't have my family surrounding me, I still would carry on, and that is what I was doing until my daughter took charge and formed the family "team."

I wonder whether your medical insurance has a benefit whereby a "home health nurse" comes in (with no co-pay) for no more than eight hours a day and no more than thirty-five hours a week and takes completely over so that you can just do what you want to do and/or go where you wan to go, and the "home health nurse" is completely in charge. I never gave this a thought until my daughter thought I should check, which I did and lo and behold, we DO have this benefit. So I thought I'd pass this info on to you just in case.
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I think there are normal reactions to things that are distasteful to each individual. Some people have stronger adverse reactions than others. I am taking care of my mother and she has bowel incontinence. She has wiped her hindside with her good towels numerous times and refused to acknowledge she has a problem. Each time she say's the same thing, "This has never happened before!" She has dementia. I finally got her to wear the correct underware when I discovered she had soiled a pair of her pants and hung them back up in the closet. Am I wrong to be grossed out by this? She also is prone to pink eye because of her poor hygiene habits and the part that is amazing is she used to be a convalescent RN and had to be so meticulous!
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If Willow is so companionate, why would she come on this site to make other people feel bad for expressing their feelings and frustrations. The other people on this site love their parents tremendously. You, Willow, are no better no worse. You are judging people who are reaching out for help. If you life is so perfect and you have the cleanest husband in town and no problems then you should be on a site for perfect people, not this one.
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My son threw-up in the back seat of my car when he was six years old, it not only grossed-me out on that day, but every time I got in my car I could smell it and it grossed me out over and over again. I wanted to barf every time I got in that car. Does this mean I don't love my son? NO! I adore my son! Everybody loves my son! The two issues have nothing to do with each other, plain and simple. The last thing I would want is to have my children give up their lives to care for my husband or myself. I hope We never lose it to the point where we would let that happen! Willow's post offers no comfort or advice. She uses it as a platform to glorify herself at the expense of others! If that's the compassion she writes about, no thanks!
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This is such a valuable site for sharing suggestions about caring for and coping with the trials of caregiving. One of the best things about this board is the freedom to express ourselves- on all sides. Yet, we are human and are sometimes offended by comments made- just as in life. It's good the air things out, this thread is a good example. We are all here to find support, give support, share ideas, and compare notes. We all have our own unique set of circumstances that have brought us to this board. I've learned so much from reading the experiences of others and thank all for sharing their unique perspective to make mine not limited to my own.
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My two cents worth here: I completely relate to caregivers who are overloaded, burnt out, feeling unsupported, - and if that isn't enough, we are now blamed by soceity for not having "enough compassion". For those of you who feel called to be a caregiver, good for you, I salute and honour your choice. But please recognise that there are many, many of us who do this work, not because we want to but because we have no choice. If I HAD a choice, he would be in an old age facility where he is nursed and looked after by people who CHOSE to do this work. I have hit compassion overload, and when I have just cleaned his room and changed his PJ's to have him mess all over them, then Yes, I get grossed out. And I get resentful. When I have to sit and hear the awful noises he makes when he eats to the point that everyone else loses their appetite, then yes, I get grossed out, and I get resentful.

When I have to clean the toilet, or the bathroom tiles, or the floor again after he has dropped his urinal/missed the bowl/ for the 4th time in a day; when the first thing I smell in the morning is old age home; when I haven't been able to have a dinner party for 3 years; when I cannot leave the house for longer than 30 mins at a time unless my daughter or husband is able to "babysit"; when our lives revolves around him and only him, then yes, I get resentful.

THE POINT IS: and yet, I still do it. And yet, I still put his needs ahead of my family, despite the fact that it has impacted so awfully on my family. He made no attempt to take care of his old age, expecting his family to do it... and that makes me resentful... and we have a right to feel this way. We are already invisible and unseen and unsupported by our family; don't belittle or judge our feelings as well. Don't cut off the one space we have to be "real", because you are looking after "loved ones". Many of us here are not looking after people we love, and YET WE STILL DO IT.

For those of you who are angry with those of us for being human, tired beyond beleif, resentful that we had no choice, I would like to ask you to practice just a little of your compassion for those of us who are trapped in a prison from which death is the only way out.

Of course we feel guilty. Of course, we feel that we are not nice people when we admit these feelings. But the point of this forum is to support each other not vilify those of us who acknowledge that we are failing.

Case in point: when he is in hospital I have all the patience for him in the world. Why? because then all I have to do is visit him and let him feel connected. I don't have to feed/change/wash/clean/ him. He gets a far more compassionate me when I do not have to deal with him and his energy 24/7.

Would I do this to my kids? Do I want them wiping my bum, cleaning up my feces, knowing that my kids and grandkids would feel like I do now? Not a chance. I would never move in with my kids, and will never expect them to do this for me. I am working my butt off to make sure that doesn't ever happen, so that they have choices of what to do with me when I get that old.
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My understanding is that medicare will pay for someone to come bath your alz patient twice a week, have them put lotion on. I know they will. Don't look at her when she eats, Find somewhere else to look, a tv in the kitchen or something. After she eats give her a wet wash cloth or wash her face for her. That is how we eat and it is not a problem anymore. It used to be because I would be fussing with every other bite because it would be smeared all over his face. He can get food on his forhead. We watch tv and eat and it is so pleasant. It sounds like she has her own bathroom. Get someone to clean it once or twice a week. If that is all you can afford, then just get that done. If you search you can find mothers of young school age children who want to make a few dollars while their children are in school. Good luck.
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I stand by what I posted.
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We are currently taking care of my father in-law. We took both my husbands parents when his mom was put on hospice. She allowed us to care for her personal needs and I was able to do this with no problem. I am a nurse and worked in a nursing home for 13 yrs. The problem is my father in-law will not allow us to help with personal hygene. we put soap and water on the edge of the tub and he will (I think) use it. The rag is wet but he will do things just to make us think he is compliant with our wishes. He is incontanent and is difficult to get him up to go to the bath room. His comment is I wear diapers and I don't have to go. We try to keep him on a schedule but that is with much grumbling. We have also turned off his tv to get him up to go. He doesn't wash his hands.And he chews and spits tobacco. All of this not caring for himself or allowing others to help grosses me out. the longer he is here the more resentful I get. He helps us with finances but not sure if it is worth it. I do love him as he is my father in-law. But I feel so guilty for being grossed out. I need to wash his feet and the thought makes me ill. Just going in to put his cloths away upsets me d/t the odors.
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It is good to know I am not the only one out here with the feelings I have. I commend every home care giver. By choice or by circumstance. You all are amazing people. I lost my parents early in their lives. I say early my mom was 65 and dad was 73. But they went quickly and I thank God every day for taking them that way. I pray for my children's sake that my husband and I, when it is our time, that we go quickly. I have made my self a no code and my husband also. so if something happens our families will not have to worry about taking care of us. We know where we are going after we die so we are secure in this. It may sound selfish to someone younger. But if they had to live through the alternative, even though it will be hard for a while they will be better off.
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Every one has their own limits and their own strengths. We are here to help and encourage each other and share what we have learned along the way. Those with narcisistic parents did not chose them, those with wonderful loving families are truly blessed. People who become caregivers through no fault of their own from circumstances over which they have no control or from love or obligation give the best of themselves. Everyone is a vualuable person with their own limits.
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WOW... Veronica, that is truly a beautiful thing to say...
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Dear Kristin3....it's sad that willow is so negative when we caretakers tell the truth about how very difficult it is to be a caretaker....maybe willow is elderly and soon will need a caretaker herself...that would be a very scary place to be after reading all the honest remarks on this site! I know that I'm terrified of getting that old now that I've taken care of my parents!! Take note that EVERYONE else on these posts totally understands you!! Goooood luck and keep posting!!
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dear kristin3...i forgot to add that your post is sooooo important that it has moved everyone to tell there terrible feelings about caretaking. even though we do it...we don't have to love it. i adore my mother...but have given up everything to care for her and my father. am i bitter...H*LL yah!! but...i have adjusted and learn to deal with it daily. this site has been a blessing for me!
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