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 do have Medicare. But to get a referral, you have to visit a MD here . They are not very good at keeping an appointment. It took an arm and a leg to get a power chair. As for getting anything free...forget it. They have way too much money and a sizeable monthly income. It comes down to they could get what little medicare would now pay for and the rest is private pay and forget them paying. You would think they are the poorest of the poor, which is sooooooo untrue. I am now in so much pain myself I am not worrying about it. I can't stand up without leaning sideways and the nausea is killing me. I don't have anyone who gives a hoot either. They know they will never have to help out, but you know they should pay me for doing their part. You can't put it all on one person. No one seems to realize that, esp. not my mother. It seems there are a lot of us in the same boat floating in the middle of no where with very little space to turn. Thank you,EndofmyRope1111, for your concern. Many hugs to you.

Wow! That's exactly how I feel! It makes me angry when people say that! I know each and every thing you pointed out and I'm still going through it. Appreciate? hmmm This is not the mom I knew. This is a very unhappy person who half the time doesn't know who anyone is. Other times, she crys because she only wants ME around her and not her grandchildren and other times she's mad because "I didn't tell her about something" that I told her about earlier in the day. And, don't get me started on changing plans around. I cannot. If I told her I would to something today I had better do it no matter what. It's so difficult sometimes but I love her dearly and she's always been a fantastic mom. I would put up with this for no one else other than mom, hubby and kids. hang in there

Millieannie,
Do they have medicare? If so they are entitled to visiting nurses who will do a lot including some cleaning etc. There are also other organizations that will send people in to help for free or very little. It takes a bit of digging on the web to find these services, but well worth looking into. There are also volunteer services, and meals on wheels. You DO NOT have to do it all. Dig to find alternatives. I, like you have disabilities, and am in fact in the middle of a SS appeal. I've had 6 surgeries on both hips, and a shattered ankle I got 27 yrs ago. I have two sisters who refuse to help in any way (except to criticize), and no boyfriend or children. As you can see we're floating in the same life raft!!! If you yourself are on medicare or medicaid you also may be able to get help due to your back. I am looking into options myself, so if you like I'll mpass on my info to you. What state are you in? Sometimes different states offer different services. If this helps any, my little escape is going out after dad is in bed for the night to hera live music. I don't mean "bar" band music, but a piano or acoustic guitar in small places. It helps remind me that I'm a human being!!! Also, if your back allows try a small walk out in nature (the best healer). I try to do little things that bring the attention back to me even if it's just for a couple of hours. If something's going to happen to them it's going to happen whether you're there or not. Sometimes we feel "Oh my God, what if something happened and I wasn't there?). Give that up and take the necessary time ti take care of you, and most of all . . . DON'T FEEL GUILTY! LOVE

Anyone who can take care of multiple dependent relatives has to be a super person. I tried running 2 houses for 5 weeks and I wound up rupturing another disc in my already worn out degenerated back. I had tried to warn them I would not be able to hold up very long. I had to give up my job as a nurse because of severe back problems. I am trying at all cost to avoid a spinal surgery. There is not a hope in this world that I would ever be able to take care of even one person now without some outside help. Who is going to take care of me...me. I have no kids and no family to speak of. There is no money to hire anyone to help me. My biggest problem is now that the parents are kind of able to take care of themselves again for a while is I can't get them to take a shower or wash. My dad has had 1 shower in the last 5 weeks. Mom has had none. I have the shower prepped for handicapped so there is no excuse. What do I do to get them to clean themselves up?

lynmac - Awww, shucks. (Imagine me with downcast eyes kicking a hole in the dust of the road with my toe...)

DT, you are amazing.

take care of yourself now DT you are a good son!!! may you find peace and comfort with all your memories...

This site has been very cathardic for me - just getting people to listen to me talk and let me vent has been without a doubt a great help in getting me by this. When I started contributing I was very depressed and resentful, I could not say anything to any of my FTF aquaintences in which I would not feel fobbed off and brushed off by what I refer to as "warm and fuzzy" references as to how "lucky" I was to still have mom with me. By association it seemed to say that mom was "lucky" to be alive even with the suffering she was having and causing. As I have pointed out many times, it is all too easy for others to pass off distress with sop, I lost not just a couple "friends" in the process (FWFA - Fair Weather Friends Anonymous - frankly, who needs them...) But in contributing to this site and reading about what some of you are going through, I really decided that I was not in as bad shape as I thought - how could I think differently - NOBODY was listening! And some of you have it so much worse than I did - at least mom did not have dimentia. After all, poop wipes off. Anyway, thank you all, I will probably continue reading and maybe I will bore you all with a comment from time to time.

This thread has struck a cord in many people including myself. Thank you "FeelingNuts" for helping all of us feel more grounded and supported. I'll leave all of you a quote on this December 21st: LOVE AND KUDOS TO ALL YOU BEAUTIFUL ANGELS! You are doing this labor of love for a reason.

"Misfortune can force you into doing things you should be doing anyway. Lessons come from adversity. Anything can happen to anyone... You can find a new lease on life -- more meaning than you thought possible in simple things... Let go. Live in the moment. Go forward."
~ Christopher Reeve

DT, I am so sorry for your loss. You were her angel on this earth, and you made her final time in this place we call earth a thing of beauty. I don't believe in "death". I feel we should call it the beginning of true life! It is where the most powerful peace, beauty and love thrive in an abundance that is beyond our wildest imaginations! LOVE TO YOU AND MOM

Thank you LORD that she went in peace. May God give you the strength that you need and help you every step of the way in your life.
Many blessings to you and be strong. Mom is proud of you!!!

DT,

She will always be in your heart and she will be with you in spirit forever.

DT, my heartfelt thought and prayers

Just to let all of my good wishers know, mom passed quietly at home under the care of hospice early Monday morning. Thank you for your kind words.

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.

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.

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

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

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!

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!!

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.

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...

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!

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

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

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.

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

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.

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!

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....