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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.

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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..
(10)
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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
(1)
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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.
(15)
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Every word that jeannegibbs said! Surrounding you with admiration and positive thoughts!
(4)
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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!
(11)
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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 .
(5)
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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.
(7)
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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.
(5)
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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!
(7)
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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.
(7)
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People who have not 'walked a mile in your shoes' have input that is of little value. They mean well and want to fix it, but they need to realize that is not possible. There is no solution, there is making the best of a bad situation. You are doing a great job! I have had 4+ years of caregiving. My Mother died of colon cancer in 2010 and my Father came to live with me. He has end stage Alzheimer's and terminal cancer. I want my life back. I'm sick of this prison. This is one of those situations that 'outsiders' can not possibly identify with - don't expect them to sympathize or understand.
(7)
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Say "Thank you for that suggestion" and just let it go.
(3)
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our hospice team are a faith based operation and they judged me harshly based on my appearance alone until they saw the loving interaction between my mother and i. now it isnt uncommon for them to have a quick meal with us while theyre visiting. i aint pretty but i can cook like julia childs on crank..
(6)
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When I read this it reminded me of all I went through with the medical professionals and the conflicting messages...it is hard I know what you are going through and until you can deal with it in a way where it does not affect you (trust me that is a very hard thing to do) the better off or wee bit better you might feel. You can only do so much as a caretaker. I lost my father after tending to him for 27 months a few weeks ago. I am left not only with a broken heart but much health issues now...I was sick the entire time and never got respite. I would do it all over again but with proper respite care. Caretaker Burnout is serious business and if you do not take care of you then who will he have. I was ignorant and did not take care of me and now I am feeling it ten fold.. It will take me time but I know I have to be strong for me and my son - my father would want it. I found out through my experience that you indeed have to take garbage in and then garbage out it goes. I had so much stress just from the mere fact everyone was telling me different stuff and mind you I was not even the patient. I had to get rid of one entity and deal with the one entity as there was the confliction on meds, etc. Once I did that I started to breathe again. I knew when I took my father out of that hospice hospital that he would be here with me till the end the way he wanted it I suppose - he had told me that week do not take me back there they manhandle me. I was stunned when I heard that. I had him for 21 days more in my life and I would not of changed anything. It was a rough last week and I know when he passed he was smiling. While I am in grief mode very much so still and having difficult functioning myself I know this pain will ease up and I will be strong again. You try to do the best you can and be stern - yes - stern and persistent - gentle and caring as it sounds like you are. I found out we do not treat the disease we treat the patient. A lot of things I had to roll off my chest because I know my father was in fear of leaving us and sad very much so about dying....it breaks my heart to write what he said to me two days before he passed. I am still trying to deal with it...even though we go through so much like I said when it is time for the Good Lord to take him Home just know you did a job that no one could or wanted to do and for that you are blessed... I send you a hug. sorry if my words are all messed up today:( I am sad...
(3)
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Bay lettuce I totally agree with you and many others what you said. The sad part of being a caregiver is also no one comes around. I am deeply saddened that still after the funeral and all still no one came here....I know everyone grieves in their own way but I thought someone would of came here to see me and my son after so many people were here days before and of the service for my father. That hurts my heart on top of an already grieving heart..hard to put it into words. I will think twice about caretaking anyone ever again without proper breaks and discussions with all family members.. And so it is and so it was.. I am in tears again now:( sorry just had to write more. xoxo Hugs to all of you
(3)
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It would be nice if there was a textbook to tell us how to be caregivers, but that's impossible because, as you say, every case is unique. So do the best you can, and I do believe you are intelligent enough to be open to good advice; the rest of it you can just discard.
(4)
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Bonfire there probably is and you know I was thinking of writing a chap book (that is what it is called) to help caregivers..I have a lot of writing to do... I love what you had to say. Everyone is different but I believe we all are the same in the duty we are called and driven to do for the love of the ill patient or loved one. Hugs xoxo
(1)
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As a person who works in the health care arena, I know the feeling. I have told many times caregivers that I understand, but you know I really didn't until I had the responsibility of my mother, who was not anything like your have described your father-in-law. So I guess I would nicely, but firmly say to them if you have not walked in my shoes, then please don't tell me what I should do. I again say please say it with kindness.
So I hope that you don't mind me giving some advice since I have walked in your shoes. First, is there another family member that can give you some time off or at least help?? What about your spouse? What about the hospice? There are some others out there who might be of some help to you so that you can a few days of respite. Don't be the martyr! Let someone give you some real time off. Caregiving is the hardest, unpaid work that I have ever done, but usually we caregivers don't help out because we liked to be taken advantage of. We have great compassion and see the real need to help out, especially family members. At this point, I don't think that you are going to change your father-in-laws attitide or personality. Pat yourself on the back at least 20 times a day, turn a deaf ear to your father-in-law's comments, and breathe and breathe. Just know that you are taking care of your father-in-law for all the right reasons and just maybe on his last days, he might just tell you thanks for all the love you have given him. People like you are what the world a great place to be! Thanks.
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Ok, here's my 2 cents :) I'm a Hospice volunteer AND caregiver. If you can join a Hospice sponsored caregiver coffee break - THEY will listen! I went to a few myself. HOWEVER, if that doesn't work too well for you, get individual counseling - I'm in counseling now - with a Hospice counselor! You need someone you can scream at, etc. or just go in the backyard & scream at the top of your lungs - And while it's true Hospice nurses, etc., are human too, they need to be taking care of BOTH your father-in-law AND you!!! NOBODY should tell you how you should be acting/feeling! that's what Im going through with the stupid nursing home!!!Ugh! Another thing, it shouldn't be an "I told you so" situation. Hospice has people lives in their hands - they need to show you more compassion. If all else fails, go to the team leader - if your Hospice has one - In Pinellas County, FL, Suncoast Hospice has different color teams per zip code, so, as an example, Dad was on the Coral Team - if I had a problem with Hospice in any way, shape, or form, I would go to the Coral Team leader & discuss it w/him or her.
(1)
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Dinagrey, so many good comments here. From my own experience, healthcare workers usually have the patients best interests in mind, but, each of them has their own individual care methods and priorities. There are even times when their "work" gets in the way of actual care for the patient, let alone the caregiver. However, an outsider can also give you a new viewpoint, so keep an open mind. That said... only you know your personal limits and emotional state. Only you can decide how far you can push these and what you can live with. Setting your limits before your FIL was good for all involved. I have found that the more the elders I care for become dependent, the more childlike they seem. They can be temperamental and demanding. Things I once did out of "kindness" are now expected. Sometimes I feel like such a nag trying to get them to do little chores. It's for their own good... I'm trying to get them to hang on what independence they still have. I am learning to take things in stride. I'm glad you have some outlets. I've been looking forward to my garden all winter! Don't get discouraged, you are not alone. You sound like you have a good handle on things.
(1)
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Sympathy from another dealing with a difficult elder!
(2)
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Hospice people may be special people, but they have their tendency to want everything to go by a cookie-cutter one-size-fits-all approach. There are some articles such as "The Dying Dementia Patient" that may help, many of them are more used to pleasant reasonable cancer patients who are articulate in their emotions.
(4)
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vstefans put it very well. The cookie-cutter approach is much neater. People who have "warts" are not part of everyone's equation. Caregiving by the book is impossible because every situation is different and messy in its own unique way. I put together a caregiving manual for my replacements when I went out of town for a week. That was the end of last year and it's out-of-date now. Every day brings its own set of challenges and those who are on the outside looking in can't possibly know what that's like.
(6)
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Well, yes, healtlhcare workers USUALLY have the patients' best interests in mind. In mom's n.h. (wich I'll never recommend to ANYONE BTW)they're not only "guarded" in their info-sharing w/me, but the DON had the nerve to have a meeting w/the nurse & social worker I hired to help me since the n.h. only shares info the HAVE to tell me - if she hurts her toe, for instance. Cuz of liability. The DON asked me to actually leave the 4uckin ROOM after they had a care plan mtg because he wanted to talk to Jackie (nurse)& Bob (social worker) ALONE w/o ME being there!!!!!I still can't get over that!!! Ugh!!!I also talked to the receptionist Cheryl a few times about mom but she told me "you can't get upset over it." OK, then I'll never talk to HER again about mom - I don't know either - I'm also fed up w/medical pros "suggesting" how I should act/feel being mom's daughter - cuz that's what I REALLY am, her Daughter!
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Thanks to all for the helpful comments. I guess I am confused about the end.
My main concern is my husband, who I love dearly and is the main reason I am taking care of his father. There is no one else. There are other kids who do not even visit him when they are in town and one son whom he has not seen in seven years.
Over the course of several months my husband has helped out more, but he works, so mostly it's just me.
The conversation I had with the social worker was to place my father-in-law in the care center for end of life care ( when the time comes ). Well, my fil wants to die at home. The problem is, just from knowing the man so well, I see problems with this. There is a crisis management team that can come in full time for three days. I just do not see my husband handeling this at all. So, my main concern is my husband.
So to make a long story short, we will see.If the team can deal with his noncomplaince issues with meds., then fine. I just see a different picture in the future. And I hate the thought of my husband seeing his father in agony in his final days. But, the social worker said that if the team could not get his symptoms under control, then he would be transfered to the care center.
It does not help, when my own therapist puts in her two cents worth too.
The situation is very different when the loved one is stubborn, noncomplaint and in denial. And he is also an alcoholic and I believe he has some mental illness going on ( he is a pathalogical liar ).
Regardless of the man's past, I do not want to see him suffer.
(1)
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I'm so proud of you all. The compassion and understanding of other caregivers is the lifeblood for many. It's often what keeps us going when we don't think we can do it another day, and this site is the best!
Read these comments, dinagrey, and soak them in. You are doing for your father-in-law what no one else could. And, yes, he appreciates it, even if he's complaining and afraid.
Take care of yourself. You've been through a lot and there's more to go.
Carol
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Dinagrey, your one sentence, "I guess I am confused about the end," may be a topic we should all explore. Many times in my life, I've stepped back and observed friends and family frantically coursing through the end-of-life stage with loved ones. Let's see, how can I sum up what I've noticed? Maybe and example would be best. Last month, my best friend's dad was approaching death's door. Our conversations were frenetic, clinical and peripheral--meds, doctors, decisions, nursing homes, hospice. At one point, I looked at Jill and said, "STOP!" We talked some more about things that were really bothering her, about how she was afraid of the unknown. I shifted her attention towards that dark space in time and suggested she fill the hours loving on her dad instead. There's a story in the Bible about Mary and Martha. Jesus had come to visit. Martha was running around cleaning, cooking and grumbling about Mary not helping. Mary, sitting at Jesus' feet, poured expensive perfume over them. Martha howled. Martha missed it. Your father-in-law may not be lovable at all times, but your time with him is short. Just stop. Look for moments to "pour perfume on his feet." Love on your husband, too. Talk about the days ahead and how you can help each other walk through this valley. It may seem long, but it's not.
(3)
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My mother passed away last month after I cared for her 24/7 for 13 years--made much more difficult in the last two years because of advancing dementia and various worsening physical problems. It drove me crazy when people continually told me that I needed to get help with her; that I should not be trying to do this alone. Right. I'm an only child with no relatives in the area, and we could not afford outside help, so I had absolutely no choice but to keep going it alone. And the people offering this "helpful" advice were not offering to help me with her, either. I miss her, but I'm completely exhausted, and have no life of my own left to "pick up." And worse, now that she's gone, I keep thinking of various incidents I could have handled better, and feel guilty that I didn't do even more, so I'm not really enjoying my "freedom" yet. This is a long, hard, thankless road. Thanks for letting me vent.
(5)
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This forum has more wisdom in two sentences than all the "experts" combined. We are all supposed to be honored and love unconditionally the elderly person who we have become to caretaker. We are not allowed to be tired, burnt out, or resentful -- we are saints! That's what hospice said, so it must be true.

Bullshit. A few weeks? ago, this exact website had an article from somewhere, maybe the NY Times -- and it was some of the most memorable reading I had come upon regarding this whole caretaker situation. In a nutshell, it said "blessed be the reluctant caretaker, because they have given up their life to take care of another and they never asked for it, and they don't particularly want to be this role".

That was me. My situation was very very similar to yours. And I had to fire a handful of healthcare workers and a hospice along the way -- they don't get it, they're just talking the talk and walking the walk to get their reimbursement from Medicare.

My mom did not die here at home, because by that time I was beyond off the ledge, and let hospice place her in a nursing home. After about 4 days of good sleep, I started to turn into a human again. She died in her sleep a week later. Hospice was there. And it was all good.

We are being sold a bill of goods about the dignity of end of life, etc.....and its a bunch of crap. No one gets a dress rehearsal for this end of life....and these organizations do no screening not do they care about family dynamics and whatnot. Its not their problem.

And what Crystal said - I'm still mad, and sad. Since my mom passed, no one comes over here and have left me the task of packing up this house of 30 yrs of stuff; to probate the estate; to settle the lien on the house; and probably sell the house and move elsewhere. I am mad and I'm not ashamed to say it. I have given up now over 2 years of my life, lost all my friends for the most part, still have no social life and wouldn't know what to do with myself if I was invited somewhere nice. I have my cat (sitting on the keyboard right now), and have actually been through training to be a volunteer with a wonderful animal rescue here in town...to try to re join the human race. Thank goodness for my job, where I am worth something.

Sorry for the rant. You are a wonderful person -- look what you are doing -- NO GUILT - if you have done all you can, move him on to a safe place and if people can't understand that, well, they never will. Do not look back, look forward. Look what you've done! You are unconditional love to him. Bless you.
(4)
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I think you folks who are taking care of in-laws and aunts deserve a gold plated set of angel wings.
It's hard enough to take care of mothers and husbands. The whole extended family thing is asking way too much of you.
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