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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 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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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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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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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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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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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, 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, 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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Yes, I like that burden halved.
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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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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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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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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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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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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 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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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 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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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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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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So grossed out by my own Mother. She just pees in her depends, so- I spend a great deal of time cleaning up after her and making sure she stays dry all day. She hates to shower and never wants to wash her hair. Don't really want to brush her hair either. I thought I am just am defective daughter. The deal is that she can do these things, just is too depressed and gluttonous to try to do much of anything.
She's lost the will to try. Probably the saddet thing I have ever seen..
Any chat lines for us? Kinda need to talk.
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sandwich42plus... wow dear girl...what an experience you had with that WICKED person you call your mother! yikes...if it was me...I probably would NEVER see her again! sounds like she's still trying to abuse you and control you...thank god you don't let her...who cares what those people think because you don't take your mom to the restroom! my father is emotional abusive...but thank god...nothing like this. he is 90yrs old...and is always playing head games...saying things to manipulate and control! it's unbelievable that at this age...he is still trying to get control by negative behavior! I won't put up with it...and in the end he's just hurting himself because i will not do things for him...unless he asks me for something...or he goes without! yep... good luck to you...you deserve it!!
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After caring for the two of them for almost four years, there is not much left that I do not find completely disgusting! I think it is a symptom of burnout and a couple more weeks and I am done! Hooray, the light at the end ofthe tunnel! Biggest fear is for myself.
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Great answer Shirleyb...GLOVES!! lol
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wow...your husband's aunt? it's hard enough taking care of your parents let alone someone who is not even close to you. love your honesty...and I could see your point! i've been taking care of my mother and father...and as my mother got to the point that she couldn't care for herself at all...I just gradually got use to changing diapers..cleaning...whatever. I'm soooo lucky, sometimes those dirty diapers make me cringe for a moment...but once they're in the trash where I can't see them...I just go on with caring for her. My dad is a different story...I'm not as close to him...and as of yet, haven't had to clean his diapers...that will be tough I'm sure!!
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I have never been able to stand touching my mother or to be touched by her. Ever. This sounds goofy but it's like we have opposite magnetism or something. Mom was of the school of parenting where one did not hold the baby (me) to sooth and comfort it. She believed in "cry it out alone". (Which I learned in therapy was the root cause of my fear of flying.) She always referred to me as "it", even to my face. There was very little sincere affection growing up. As an adult, she told me that I had never done anything she could be proud of. There was a lot of emotional and verbal abuse, manipulation, and narcissistic-borderline personality behaviors though. A lot of spanking out of anger. So this is not the foundation of a close relationship or future caretaking.
This is how you get your entire family to walk away from you.

When she could no longer be safe alone, we moved her to our state to put her into care. When we were together, she would insist that I stand in the bathroom with her. She was always on the throne for at least half an hour and made the foulest stink. And I've been around corpses, so I'm not a wimp about that, but her bowel movements sent me over the edge. She did not need help wiping, standing, or dressing at that time. There was no reason for me to be in the toilet with her. I would NEVER expect my daughter to just stand in the bathroom while I go. She would insist on pulling on my injured arm while she sat there, and refuse my good arm, so it wasn't for balance. She knew that hurt me and didn't care. It didn't take me long to learn to say no. This was just another kind of abuse she doled out.

There was one instance in the nursing home where she wanted help in the toilet, so I went to get an aid. Mom refused the aid's help. It "had" to be me. I told the nurse that if mom didn't need her help, she certainly didn't need mine.
I refused to go in there and got a dirty look and chastised by the aid (which was not appropriate). Judge away, but I'm not going in there!

Her hairbrush grosses me out, her dirty laundry makes me want to vomit. Yes, this 100% psychological because of the past. I don't want to touch her hands because they are filthy from picking in her Depends and her nose and who knows what else. She won't let anybody clean under her nails, so that is a breeding ground for the next bubonic plague. I can't bring myself to hug her because it's dishonest on my part. This woman spent her adult life chasing family off and alienating everyone who would accidentally try to befriend her.

I am grateful every day that she can live in a memory care nursing home where other people perform the care tasks for her and it does not have to be me.
She is safe. She gets fed, bed, and meds.

Now if it were my husband or one of my kids who needed this level of care, I'd be all over it without a second thought because we don't have an abusive history with one another. There would be no question that I'd do any care task needed for them.
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In taking care of my husband who has AZ, I have to handle some gross situation. I found that an inexpensive box of latex gloves solved my toughest problems. Dribble or smears all over & around the toilet...spray bottle of disinfectant in one hand and a glove on the other, I can use paper towels to clean up anything. I never say anything derogatory to him about it....just wait until he's moved away & clean it up. When he was his (old) self, he would have been so mortified, he probably have killed himself. But now he doesn't even realize the messes he's made, so why make a fuss. I've only been at this for about 18 months. So who knows what I'll be feeling or doing after a while. I also have a strong faith that right now I am where God wants me to be.
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You are living my nightmare!! In fact I'm getting my own fridge for my bedroom so she can not drink out of bottles and eat food with her nasty nails. I feel so bad to say all this but it's nervous breakdown for me. The staring is another issue! All she does is watch me all day long. I feel like I have my own TV show sometimes. Well it does't seem like it is going to get any better. I'm sad for all of us that are going though this.
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And the grossing out continues-my mom had lost her olfactory sense, which meant I kept wiping up the bathroom floor when I had to live out of state with her. She refused to move in with us here in Maryland (hubby and I). And no, it was not urine I was wiping up! Talk about super gross! She was using a walker and was waiting too long to use the toilet, so it landed on the floor! Also, she had a shower seat in the shower stall and one time she used it as a toilet! And didn't even know it!
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