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.
Carol
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....
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 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.
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.
"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
Rose
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!!
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!
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
"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 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.