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FeelingNuts Asked December 2011

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

They don't know me and they don't know what I have to go through,Everyone here on this board knows, we have to shower our mother or (father in my case )and put med's in places that we would really not like to touch let alone look at. Clean up urine, and poop anywhere and everywhere. Be home bound so that medicare will pay for services,take them to dr's appointments, not be able to go anywhere without finding someone to take care of them for a few hours or having to take them with you that means getting them in and out of the house and a car.
Let alone making different meals because they want to eat later or earlier.
The extra washing of clothes and towels ect...The no time to yourself or with your husband or wife. So I am missing something here what is it that we don't appreciate again. I just want to say to them walk a mile in my shoes then you have the right to tell me to appreciate what I have.

EXPERT Carol Bradley Bursack, CDSGF Dec 2011
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

DT Dec 2011
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!

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endofmyrope1111 Dec 2011
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

moonchild Dec 2011
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. . . "

yellowfeever Dec 2011
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.

jeannegibbs Dec 2011
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!

lynmac1 Dec 2011
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...

cathyluv52 Dec 2011
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

jeannegibbs Dec 2011
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.

DT Dec 2011
Yes, mom had the 'rattle' too, I have heard of it referred to the 'death rattle' - the hospice nurse demudrred but I used the word and she agreed. Sorry to be so blunt, but it is what it is. As for the fluids, I have heard anywhere from 3 to 4 days fluid deprivation on a healthy person, hospice nurse said to wet a clean washcloth with cool water and moisten her lips, if she sucks on it it is OK, but I am sorry to say that if this is going on it may be her last hours. Yes, talk to her, it will help both of you.

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