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.
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
"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
Many blessings to you and be strong. Mom is proud of you!!!
She will always be in your heart and she will be with you in spirit forever.
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.
"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
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
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 :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!!
Rose