Fed up with the medical support telling me how I should feel or act as a caregiver.

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I have been the caregiver for my father-in-law for over two years. He is end stage stage copd and currently receives Hospice care at home.
To say he is a controlling man is an understatement. He is, at best,a difficult man and very stubborn about his medications or listening to the doctors/nurses/social workers.
I know everyone expierences dying differently. That's all I keep hearing. That it is his decission about end of life care. He has the final say so, etc., In my brain, I know this. I am a very logical person, so it is diifficult for me to even try to understand an irrational behavior, but I try my best.
It seems as if I keep getting mixed messages from his care team and to be honest, I am fed up! Don't get me wrong, for the most part they are angels and great people. But, I ask you, if every person expieneces dying differently, wouldn't that also apply to caregivers? That our type of caring style would be different from each other?
I was very honest with my father-in-law in the begiining of my choice to be caregiver. I told him that I am not a very affectionate person, but that I am caring. I told him that I am tough ( being raised by a srict military father ), so that I would push him to do the things that I felt he could do for himself. I told him that I am not one to do a lot of small talk and I also told him, that there would be some things pertaining to his care that I could not do, such as bathing, changing diapers, etc., On the other hand, I cook very good meals, do his laundry, run errands, take care of all medications, clean the house and take care of his fianances. I might also add, that last April he was given four months and that was almost a year ago.
So how do I cope? I vent. I listen to music. I write. I work in my garden. I pray.
My father-in-law, comes home from respite care today. Two days ago, he was already giving me orders over the phone. The Hospice nurse told me he was disrespectful and bossy, not to mention argumentative. I told her that was something I expierence everyday with him. I was happy that she went through that, so maybe now, they will get it.........that I am doing the best that I can in a difficult situation.


hospice people are just humans too and they also have a morbid and demanding job. since i believe anyone in any profession should learn something every day of their lives i give them lots of input / observations. they are riding around in cars, were on the battlefield. we have time to read and i havent met one yet who didnt appreciate input based on my internet reading. educate them, most are half our age..
Dina, is your father-in-law a man of faith or not? He sounds very frightened and in need of being humbled spiritually. Have you tried getting him to open up to his emotions? This is not weakness. This may be cathartic for you as well.
I have found that the gruffness is a cover for fear. Anger is the other side of fear and hurt. I hope you are able to come to terms before he passes:) All the best. xo
No one should try to tell you how to feel. Well, I guess I make an exception for people who tell you that you shouldn't feel guilty because they are usually right. But in general, you feel what you feel. No one else can be in charge of that.

How you act on those feelings in another matter. Sometimes professionals can give us good advice about that. You don't have to change how you feel about your FIL, but at least consider what Hospice has to suggest about what you do as a caregiver. They aren't always right about that, either, and you don't have to do as they say. But at least listen to it.

And now I am going to tell you how to feel. :) Feel proud that you have taken such good care of this very difficult man for as long as you have. Feel satisfied that you have done the best you could (and a whole lot better than many persons could) in an extremely challenging situation.
Every word that jeannegibbs said! Surrounding you with admiration and positive thoughts!
It's hard not to take comments to heart, especially when we are under stress and "worn out". I read something on this forum that helped me with this, they said to listen to the comment, decide if it applys to your situation or is helpful to you. If it is not, wipe it from your memory banks.

When I was caring for my parents, someone would make a comment or suggestion and I would hear it repeated in my head over and over, making me feel so inadequate and small. I think they were trying to be helpful, but they didn't know what I had tried, what my strengths were, what I had been through, how stubborn my parent was. I tried not to hold it against them because they were being helpful, but I did let it make me feel like I was not 'enough'.

Now that I look back, I have more clarity. Was I "perfect" no, but I was "me" and I did the best I could. We are thrown into a situation which we aren't trained for, we learn as we go. For most, it isn't our chosen profession. We do the best we can with what we are given.

Hugs to you!
It sounds as though you have done all you could and that you have honored the commitment and terms you made when you first began to care for your father-in-law. Congratulations! It's been difficult and you have managed well. As for those who are critical, do your best to ignore them .
No words of wisdom here ... just lots of sympathy and compassion. The social worker at my aunt's day care is always having people call me to "help out" and "give suggestions". Instead it feels as though they're putting more pressure on me and giving me more to do. People outside of your life can't possibly understand all of the factors and it's too exhausting to constantly clue them in. Thank them for their input and move on. It sounds as though you've got this.
Dinagrey, I find that people think they are trying to help, because they do not know what else to say. You are a person with feelings and doing a great thing by caring for your father-in-law. As my mom always told me, "let it go in one ear and out the other." I know this is hard to do, but you are doing a tough job, they work in shifts then go home to their families so they are not caring for someone 24 hours a day. So give yourself a pat on the back and ignore what they say. You are right you are an individual and we all deal differently.
You're tough. I get it. But I think you need a big HUG! Please relax, just a minute, and accept this one from me. This job requires so much from us. I, for one, am happy to have a place to go on line that "gets it." All of our experiences are different in the details but the same in so many ways as we juggle our needs with those of our parent or parents. I was having a tiny mental breakdown last night and read your post this morning; it's just good to know I'm not alone. You're my comrade. We can do this. I'm going outside to pull some weeds before Mom wakes up!
Hello Dinagrey!

I commend you for accepting caregiver responsibility and doing the best you can. Nobody can ask more, neither can they tell you how to feel. Others may be able to make suggestions. People on this list do it all the time thank goodness. And they do it by sharing experiences that only a caregiver has. Just as you have done. It’s up to each of us to choose what ideas might be helpful. For me, the only logical approach to irrational behavior is to remind myself that's exactly what it is. I try not to be hurt by unkind words or actions, but after more than two years as a caregiver I still have to remind myself of that truth. In any event give yourself a hug. The work you are doing is invaluable. Where would your FIL be without it.

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