Why do people that are not caregivers, think that they have the right to tell you that you need to appreciate what you have?

I'm so glad you are using this forum to vent your feelings. No one knows what we do until they do it. You'll hear from many, I'm sure, on the site. Please keep coming back and reading the posts. You will at least be reminding yourself that you aren't alone.
Carol

I hear and know what you are saying.
These people probably don't know what else to say to us, may not really "get it".
Actually, we really do have to appreciate what we have....what we have left that is.
We have practically lost ourselves, our lives....sometimes I feel more dead than the people I am trying to keep alive. They have hope, and I am loosing mine.
That is what my life has boiled down to.....giving hope, happy times, personal care, love....

Oh I know so well. Example, my mom is last stage Dementia. She is bedbound, unable to walk, feed herself etc... But one of moms "friends" who hasn't been here to visit mom in a year calls me periodically. She insists mom will pull out of this, mom is just depressed. She wants me to take mom to all these drs she looked up on internet. She tells me not to give up on mom!!!! I have been with my mom for almost 3 years now 24/7 allowing mom to live at home. But then I get questioned not to give up. Oh it burns my bottom. I have ran my mom all over to many doctors and got same diagnoses DEMENTIA. At this point she is on Hospices she will never be "herself" again.

I guess people who arent involved in the act of caregiving don't get it. They see what they want to see. They live in a world of denial how bad the illness is and think all will be well. I wish mom would get well, but the reality is the opposite and there is no denial for me. I was slapped in the face with reality.

People mean well, I just get bothered by ones giving me pep talks when they have no clue what I have and am going thru.

I have learned just to let it go in one ear and out another. I got a full plate here with my mom. I don't need to be bothered by what people say. I just grin and change the subject.

I didn't get it till I was doing it! My cousin dealt with her mother in law for years -- mean as a snake with dementia on top of it. I had no idea how hard, how life-sucking it could be. I'm looking for the good and finding it. It's not a total nightmare. But I think there really is no WAY to "get it" without the experience of it. Even saying, "It's like having a toddler again" isn't a close enough analogy. So when people start giving me advice about what to do, I have been saying, "It's so clear that you care a lot about (me/my Dad) and I am grateful for that. Thank you AND I'd love to talk about a new topic now." So their loving impulse to help is deflected. Pep talks don't help. Sitting in for a few hours while I'm waiting for a repair guy to come but have to take my Dad to the doc -- that DOES help. So, find ways to help people help you in ways that help. OR -- ignore everything I suggest here, if that's helpful! Whatever works, works Sending love...

This is a roller coster ride I am very Thankful to still have my parents but then I am also tired and burnout from all the work. I have been a 24/7 care giver for almost 4 years now and have helped them many years before but they have also helped me. I live close so my days are back and forth and I spend the night with them . My husband had rather it be this way. I know what it is to loss yourself and how you can become angry with the others in the family as you carry the whole load. My parents are set in their ways as I am sure most are. I can't bring in outside help for my mother is very shy and I am not going to stay and babysit another aregiver.
I don't clean up very much and only go to the store when not many are there. I lose my patience some but I truly believe that it is not possiable to do this and not feel this way. I will be lost when it is over as I am close to my parents but they don't even think I care I can't make them understand that I am burn out and tired my dad will not extrise so he get weaker and I have to carry more I think this is what bothers me the most. My brother lives a few states away so he doesn't help alot and he is not a caregiver and would put them both in the Nurseing home. They would not fair well in a home i know them too well. So this is a roller coster ride for me I am grateful one day and tired and burnout the next as I am sure many others are. I pray for strengh and patiance more than anything. Sometimes I wonder if it is this hard for a reason for when it is over maybe we will be too tried to greif like when a teenager moves out it is a relief when they have pushed you to the limit you love them but you need a break. Unless you have been a caregiver you don't have a clue. Good luck to all the caregivers out there like I tell everyone I may not be doing it right but I am doing the best I can. A Blessed Merry Christmas to everyone.

I totally understand what you are going through as I took care of my mother for 6 years in my home with no help from family. There were times I was so tired and depressed I didn't think I could face another day. My health also started failing and after 6 years, I finally had no alternative but to place Mom in an assisted living facility. Even though the Assisted Living Facility was absolutely top notch, she only lasted two and one half months after I placed her.

Now I look back and actually miss taking care of Mom even though it was extremely stressful, confining, frustrating and overwhelming. I am so glad that I took care of her for all that time even though at the time I thought it was the hardest thing I ever did. It wasn't. Losing her is the hardest thing but because of those 6 years, I have some wonderful memories that other family members who never called or visited will ever have.

I don't know if this helps you or not because it is so difficult when you are caring for another person's every need but trust me, one day you will look back and be glad that you did it.

Nina I agree with you I cared for my Grandparents and my Father.... now my Mother.. It is not easy and there are days with my Mom I would like to tear out my hair but I know I will be thankful I did it. My Father wanted to be able to die at home, and we had hospice for medications and equipment by my son and I cared for him. He was able to die peacefully with dignity at home. I miss him EVERY day but I am thankful he is not suffering ...

I am stressed today as it is almost every minute care my dad is a very needy person who has been selfish throught these years. I really get angry when I am told that I am cutting my life short by not honoring my parents. What more can I do to honor I have saved him 120 thousand dollars that the nurseing home would charge to do what I am doing for basily free I have given up my life totaly the ony 2 things I still have is tv after they go to bed and my computor this is my freedom . What really bothers me is that i am not really apprated for what all I do it is just expected of me. My dad will not hardly reach across the table for anything my mom wants him to have the best care and really hounds me They have no clue of what I have given up. My brother lives a few states away and comes in every 6 months or so to give me a break but that is not enought. When it is over everything is split down the middle and I will have to buy him out I have had to buy a lift van to just take him to the dr. I am not too good to do what I am doing but sometimes I just feel used. I don't know when it is over if many of my family will ever see or hear form me again.

The answer is right there in your question FeelingNuts (love the name!). It is precisely because they are NOT caregivers that they feel entitled to give you that callous advice. People who have never done this job have absolutely zero idea of how just how exhausting it is mentally, emotionally, spiritually and physically. It's easy for others who are happily going about their lives to look at us and judge not having a clue as to what we're dealing with. I say ignore them! If they are your "friends" you might want to consider just how loyal they are. If it's your family guilt could play a big part in their accusations. If it's just people who are on the outskirts of your life keep them there. There are some wonderful things that come out of our caregiving. We learn that we are stronger than we ever thought we could be, we discover who really cares about us, and those who are fair weather friends, we gain a sense of pride and accomplishment that non caregivers will never experience, we are role models for our children and others who will eventually be caregivers themselves and we learn to appreciate the smallest of lifes gifts. This will not be forever, and we must always keep that in mind. It is easy to forget that because the daily routine and exhaustion makes it feel like it will never end. We get into a groove of depression, and loose all sense of reality. I try to remind myself of all these things every day. There are many days that I forget too, and the grind feels once again too much. The Universe would never trust those who are unworthy or incapable of such a task, so hold your head high!! Completely, and I mean COMPLETELY ignore those who do not understand your sacrifice. They are unworthy of your worry. Stay strong, and remember we are all here, and are all PROUD of you!!! LOVE and LIGHT

ignore them. they haven't a clue, and really, they ought to be grateful they haven't. smile at them benignly and say, "yes dear. . . "

One of my good friends who I haven't seen in 6 yrs came to visit last week from Oregon. She was full of advice, advice, advice; advice of which I had not asked for. Instead of a visit from my dear friend, I endured a week of pressure and more work than I already have. She was completely oblivious to the stress I am under. All I did was entertain, and run her around everywhere. People just do not understand what this is all about. I had to rework my whole schedule around her. The crazy thing was that she stayed with dad and I, and didn't seem to see how sick he is! I think people just choose not to see what's going on.

"When we honestly ask ourselves which people in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."

~Henri Nouwen

Someone once said that when you're up to your neck in alligators, it's hard to remember that you originally came here to drain the swamp. I've been taking care of my disbled wife, her mother, my mother, my step-dad and/or my oldest brother for the last 17 years. I don't hide it. And I'll take good advice from anybody who has some to offer. If the advice is no good, I ignore it. But I give it a look first. Someone who isn't doing intimate care during meal prep is right when they tell you that you should be doing these two activities one at a time and not together. Care giving is a crazy place sometimes, and maybe someone on the outside looking in might have something to contribute worth hearing. The crazier giving care is making you, the more likely that outside observers can offer you a cup of sanity with their advice. I've been on the receiving end more than once. Good Luck, and God Bless You for the care you give.

Do not have time now for full disclosure - will respond better tomorrow - but, in a few words, I like to say to critics "How is the view from the cheap seats, anyway?" That is, those who are not personally invested in the care of an aging parent find it very easy to criticize. Tell them to divide up the time in a 24 hour day and help, put up, otherwise, shut up!

I have gotten some good advise, however it was from ones who walked in my shoes. I get frustrated when others think I have all this time in the world to do things. Like I am just here mooching off of mom sitting on my behind. I guess I am judged harder cause of my age. I don't think age has anything to do with caregiving. Its hard at any age when your in this situation. Just because I am in my 30's doesn't mean I don't get tired, or depressed. I have children ranging from 9-17 which that is a full time job as well as taking care of mom. I have been asked to hem clothing for neighbors, asked to bake cookies/pies, I have been even asked if I could crochet a blanket. My one neighbor was appauld that I don't plant a garden and can food(because my mom and dad did it) I just wander what these people think I do all day??? Just because my mom did things for them and was a "suzy homemaker" that doesn't mean I am her replacement. My neighbors would rather gossip about moms condition and tell me what to do rather than taking a step in the door to see for themselves. Lately, I have been ignoring there calls "thank god for caller ID"!!!! I don't mean to talk bad about these neighbor ladies. They are very nice but they just don't get it.

More lately if someone calls just to find out how things are going, I just start a monologue of what I have been doing today and what I have yet to do for the rest of the day,not letting them get a word in edgewise, none of which involves me! Inevitably when someone tells me to "take care of myself", I just shut them down and snap "yea, like anybody cares", and hurredly end the conversation, even to the point of what I used to onsider being rude. No time for social niceties when she has to get to the potty fast. I do NOT need warm and fuzzy right now - warm and fuzzy does not change the depends (which are warm and fuzzy eough...). Anybody with exhortions that I need to take care of myself can just keep the words to themselves - they do not go far as witnessed by yesterday which is too long a story to relate now, but it involves all hell breaking loose while I went to see my own doctors at the VA - sitter was not worth a damn, neither was the social worker or nurse. 'Bye - got to go sort mom's pills now and then to the drugstore to get a new batch, but in between the hospice caregiver is coming to show me how to bathe mom in bed (she needs it after yesterday and last night). Yay! See ya....

Thanks for all the input, It does help to know that there are people out there that are doing the samething and also going Crazy too! :) If I had not found this site I am not sure what I would have done. I do have so good neighbors that would help me at anytime. And my wonderful husband and daughters, Not sure how you would do caregiving without support. I think maybe I should tell them, you would like to do it for a day, So I could have a whole day off to myself!

Glad you are feeling a bit more "up"!!! When people "vent" it helps not only them, but also the rest of us. It allows us to relate, and isn't that what we all need? I agree with give a hug in some ways, but a lot of people simply do not know what else to say. I notice that a lot of those very same people ask me if they can help in any way. They even get specific sometimes like "Can I help you with housework, or give your dad a ride to dialysis sometimes?" As much as their words and offers are really not things they can help us with because our parents need special care that is sometimes very personal. Still, I do believe many people do mean the best. It's hard for those who've never done this to understand the nature of our needs. Off to see "The Wizard" (my shrink)!!!!! LOVE to all, and remember this is not forever.

Probably guilt over the issues they didn't resolve in personal life experiences.

I will not argue about some people suffering some guilt, but for the most part I find that they, having a life, simply cannot concieve of what a sole caregiver, voluntary or not, has to go through in a normal day's attention. Offers of help from hospice are very welcome, but they only go so far and are of only limited effectiveness, as witnessed by the fiasco called last Friday. When I finally got home after a hour and a half drive to see my own doctors, it took me from about 3:00PM to about 8:30 PM to just cope with the ruin of my entire routine, including setting up a hospital bed in the middle of the living room to making it (the top sheet they provided was disgusting, I used my own) to rinsing poopy PJ bottoms and towels and then washing them (the Depends did not contain everything), getting some sort of supper for us (I still feed her as if she wants to eat, even though it is hard to poke enough caleries down her to keep a bird alive), washing up, getting her to her bed and ready for the night, in between getting her to the potty chair ON TIME, and the beat goes on. There is nothing wrong with us that enough imagination to place themselves in our shoes would not cure. It has been said that explanations are not excuses. Guilt is an excuse, lack of compassion, reason, and empathy is the explaination. I am afraid I have alienated a few people because of their lack of imagination and givin them the rough side of my tongue, but that kind I do not need in my life at all.

You are absolutely correct, DT. It is not an excusable behavior. It is narcissism at its peak.

I have received those comments but in another form. People have no idea what we as caregivers go through - giving up our lives to take care of our parent (s) and when I'm told about appreciating what I have although not well received I think they mean that we still have our parent ... Even though they may not be totally there. I now ignore these comments (used to give them examples of what I go through) although they do/did really made my blood boil
Rose

For the same reason that people who have never raised children feel free to offer advice on what you are doing wrong in raising yours!

You know, though, I think of a scenario where I saw a caregiver going through the pains of taking her mother to Walmart. The daughter was just exhausted. The mother was cranky and tired. It reminded me of when my mom and I used to take Grandma to town to shop. We knew it was going to be grueling but she loved it more than anything so we did it. Seeing these two made me remember and made me smile. I wasn't smiling at their agony. I was smiling because I was glad I did it, too, even if it was the most work I would do until the next outing. Maybe that was the source of appreciate what you have? Just a thought...

You are right - I have actually taken great satisfacton in the fact I have done as much within my power as I cold to make her last years as comfortable and as quiet as possible considering quite a number of limitations.

Dt, I couldn't agree with you more on your last post. No matter what outsiders feel about me. I am doing this because its my mom and I love her. I am not here to gain "acceptence" or "Saint-hood" from others. I live in a small rural community where everyone knows everyones business(at least they think so). I respect my mother enough not to air her dirty laundry so mom is gossiped about. I know I share on here but I know I am among friends who understand. And won't judge me. I have became almost a hermit in this house. But thats okay. The less chaos the better. I don't need ones coming here just to gawk at mom.

Dt :Also, I am sorry to here about the hospice craziness. My mom is on hospice and sometimes it can be a circus. I have set time limits of when nurses and bath aides can come. I might be a 24/7 caregiver but my door is only open M-F 12pm-4:30pm for hospice staff. I have kids and a husband as well as mom. So for my sanity I need boundries. The hospice staff has been very accomidating so far. I have also requested same nurses and same aide so its easier for mom to feel comfortable around them. I also want them familiar with mom and her needs, instead of reading her information from a chart upon arrival and asking fifty million questions. I know I sound hard to deal with but I am very easy going. I hope hospice gets better for you. I have had a good experience so far, except the pushing of Morphine for anxiety that I don't agree with.

I wish the public was more intune with what we are all going thru. To me, I feel us caregivers live secret lives we have fallen through the cracks in society. Out of sight, out of mind. I wish there was a way for the outside world to really see what we deal with day to day and gain that sense of knowledge. Instead of being ignorant in the lack of knowledge. Our loved ones might have different health issues, but caregivers all go thru this journey together. The sense of not being alone has really helped me in so many ways. When I came accross this site about a year ago I was at witts end. I was struggling to crawl out of the hole that I hit bottom months before. I know I have my spouse but he gets to leave the house everyday and doesn't see it full blown as I do. He tried to help but he didn't understand. Thats when I came accross this site, I thank God that he guided me here. I have been able to share with others and taken in some good advice. That has helped me more than a shrink I was paying. And the perk, this site is FREE!!

There are two questions asked here. How do I help my father and still give him respect and the privacy we fell that is expected. Two how to handle persons who do not have a clue about taking care of parents whe are ill and need their needs care for in a personal manner that one is not used .
The best advice is to smile and change subjects or say " I hope you do not have to help your parents as I am having to help mine".
The second is you are keeping a family member clean and safe, but we were brought up to not look at our parents private parts let alone clean up the same.
This is hard to do but be as professional as possible and do the best that you are able. the lose of bodily functions is part of the bodies changing with illness and will not go a way.Keeping you father clean is hard but will help him stay well , less sores etc. He probably changed your diapers and cleaned up your messes , so do the same for him. It is hard because we love our parents and to see thim so ill and helpless hurts to our core. Good luck and love your father each day he is with you!

I agree with you 100%. People don't seem to understand that this kind of responsibility is very hectic. That doesn't necessarily mean we dont love them. I learned my lesson and am careful who I listen to. I appreciate them trying to give me feedback,but it is always more of a negative one than a positive one.
Some people will never ever be able to relate to you,unless they have been in your shoes,therefore,I chose to believe that I am doing what I have to do despite what others think. I can't get anyone to sit with my mom
(and did the same with dad) meanwhile they get annoyed when I don't go to their 4th of July barbecues and or any holiday events.By the time I get prepared and prepare my mom,I am exhausted.It takes me more than an half an hour just trying to get her into the car and vice-versa.
You keep going and believe with all of your heart that you have taken upon yourself a great responsibilty and when their time comes,you will experience a sense of relief, not because they are gone,but because you put in all you had in you and now they rest and you too.
I felt that when dad was gone and today I feel so honored that I was able to help him and be there for him when he needed me.Remember,everything has its time and this is temporary.
Much luck to you and blessings for the new year.When you honor your parents,the hard labor is just a reward you will receive much later in life.
Cathy

Yellowfever, who in their right mind would do this for "acceptance" or "Sainthood"???? I thought that was so funny when I read it! A person would have to be a complete masochist to put their hand up for this responsibility! It can only be out of a very deep love for a parent that one would do this. It personifies the term "labor of love". Those who make foolish accusations like that are to be swept away with the rest of the dust! You know the truth, and that is all that counts.

"I know God will not give me anything I can't handle. I just wish He didn't trust me so much.”
~ Mother Teresa of Calcutta

thats so true I believe. Sometimes we as caregivers or no,t in general get so wrapped up in what we feel is the right way or wrong way, believeing "oh that would never work", " I tried that, doesnt work", "just never mind you dont understand".....are those very same people that need to try and take a little advise from someone on the outside looking in. Besides, arent most 24/7 caregivers on the asking, then decide not to make any changes? ; making it harder to get along with others, including family members. "change is good". Get up and let the sunshine in. take a look at your calendar,,,as it is one day LESS you will spend with that person while they are alive, because most are dying faster than we are.

I don't think that FeelingNuts is complaining about people giving advice in general, nor is there any indication that she is unwilling to consider alternate ways to do things.

I hear a complaint specifically about one kind of response -- noncaregivers who say, "You should appreciate what you have." Even when we are doing this out of love (and not just duty), even when we truly want to be in our caregiving role, even if we would not give this up for anything, I think very few of us "appreciate" what we have every minute. We may be grateful to be able to be of service to someone we love, but we don't always "appreciate" the nitty-gritty tasks that includes.

I think I'd respond in one of two ways to that kind of statement. If the friendship/relationship seemed worth salvaging, I might say, "Oh, Carla, I do appreciate having my mother with me now. I know I will miss her when she is gone. But right now I am overwhelmed with the difficult tasks of caregiving and with feeling alone on this journey." Or, if the friendship isn't worth the effort, "Thank you for sharing your opinion," and a mental note to avoid talking to that person about my caregiving role ever again.