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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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geez, by baby lettuces criteria me and our parrot both need anger management. bird sed blow it out your ass..
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Swearing and three separate, angry responses to an imagined slight, defensive response to a suggestion - all indicate a need for anger management. Come on Caregivers, let's try to stay on-topic for DinaGrey!? I hope we can move on now...I know I will. :D
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Thank you, AlwaysMyDuty - I appreciate that - feisty, huh? lol - I wouldn't describe myself as feisty but I guess I am! People ask questions & I answer them too - which is my right as everyone else's - demanding & rude? Noooo, that doesn't belong on a public site - but I know what you mean & appreciate that!
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I like to think Karen is feisty! She says what she feels. You know where she stands, no guessing required. Not a thing wrong with that. At least she's not demanding and rude like some others.
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Lol! Karen, on one of the prolific threads off the wall comments from people not familiar with the site are called "drive bys." Sometimes they never come back, and sometimes they can become your best friend:) We are all a little weird sometimes, right?! It's a caregiver thang! Baby Lettuce! Come back and show us the real You!
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Really, seriously "anger management"? How long have you been on this site? I've seen folks in worse situations than me - don't know where you got that from...we don't even know each other & you're recommending anger management?
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krusso, you might want to check into some anger management...
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Well, like I said, I'm a Hospice volunteer - I enter volunteer & grief notes - & from what I've seen in the grief comments - what survivors say about Hospice, for the most part it's positve - but again...Hospice isn't perfect - I really hate to say it like this but if you want perfection - the only place you'll find it is in heaven - remember, Hospice nurses are PEOPLE I know of course they're bound by professionalism but sometimes stuff happens - as for people telling caregivers how to behave - well, when mom passes I will file a formal complaint against that nursing home!!! The DON even wanted a closed door meeting w/MY two private hires WITHOUT me in the room!!!Now how awful is that?!!!Look, Dina, I'm so very sorry Hospice is treating you this way - I mean that - I don't know what else to say! since he's your FIL, where is your husband, if that's not being too invasive? Just know we're all here to support you & each other...
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Brava DinaGrey! As a healthcare professional, it sounds to me like you are doing a great job, and you won't have to endure this pain much longer. Just keep doing what you are doing and you will have a place in heaven where your father-in-law probably won't be. You never mention his son. Where is he in all of this? Ask him to do some caregiving and give you a break.
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Krusso - you have 4 comments showing - the first one starts with "I am a hospice volunteer, BUT..." - is that the one you didn't think showed up?
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Dinagrey you are doing a wonderful job and remember your best is always good enough. Certain illnesses have similar effects on different people. For example your FIL has COPD and as soon as an experienced nurse hears this diagnosis he or she will know he is not going to be an easy patient. Now he has every right to feel resentful and miserable, it is a horrible way to die. Do not expect medical professionals to prescribe drugs to change his behavior, rather they should be concentrating on alieving his symptoms and making him more comfortable. If he has always been difficult and demanding he is never going to change.
Now a word about Hospice. There are for profit and not for profit hospices. Of course those that are for profit may take the opportunity to pad there bills just as many hospitals do. Those who accept Medicare and Medicaid are very closely supervised by the state, at least they are in New York State. A two person team whould arrive unannounced and stay for a whole week, pouring through the patient's records and accompanying the nurses on home visits watching their every move.
Like everywhere else the quality of the nurses employed by the hospice varies.
Those who have never worked for a hospice think that the nurses do it because they are too poorly trained to do anything else. This could not be further from the truth. A competant hospice RN need to have years of experience to do a good job. He or she needs to be able to deal with any emergency and diagnose difficult conditions so that she or he can report to the Dr and ask for appropriate medication. 911 is not usually an option. The patient usually has a DNR and refuses to go to the ER. It is rare for a Dr to make a home visit. So if you see an older RN visit from Hospice she is not a "has been" she has a wealth of experience and training to share,where as one with a bright shiny BSN may never have met some of the conditions she is required to deal with. Just as there is caregiver burnout the is also a high level of nurse burnout working with hospice patients. The nurses find a great deal of joy in careing for their patients and their famillies but it comes at the price of personal stress. Nurses do get emotionally attached to their patients. Six years after retiring I still get hugs from family members I meet in the street. I also love to see former colleges but still can't bring myself to visit the office. I do not even drive past as I have the vision of a big hand pulling me in.
Don't get me wrong, I loved my work, my patients, the famillies and the challenges but in the middle of the night I would often stop outside the door and say a little prayer because I had no idea what I would find on the other side.
I came late to hospice work at the age of 58 and worked for ten years as the on call nurse. On call was 126 hours a week for three out of four weeks which included day and night at weekends.
Dina you are doing a wonderful job. no one has the right to tell you how to behave or feel so speak up and don't accept it. Yes you may need guidance in the care you provide, no one knows everything. Take care of yourself now and more importantly after your FIL passes.
To Lori I am so sorry you had to go through this horror, it is something no one should have to experience. I have had to fend off the EMTs when a familly member who didn't know any better called 911, they eventually learnt not to mess with this old lady. I eventually had to carry a paper that said I had the final authority. Blessings Dina and everyone else
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Well, I guess I WILL deactive my acount - don't want to but oh well, can't waste my time answering questions if they don't even show up, right? Good LUCK to all of you!!!
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Well, guess my comment was NOT posted - by y'all - it's been real ;)
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Where's my comment? I just posted it? If I don't see it I may delete my account. Wow!
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I'm a Hospice volunteer BUT I don't know how they "are" behind the scenes - what I DO know is the DON at mom's nursing home said "she could live another 20 yrs" - SERIOUSLY? Really???She's 94 - I don't think so!!! He should've kept his mouth shut!!!But getting back to Hospice - they are correct - everyone "dies" differently, we don't know HOW they told her he's bossy & argumentative - did they say it gently or were they being rude? - ok FOLKS here's a startling fact: Nobody is PERFECT - not even Hospice!!!So, we live in an imperfect world - I don't know how long mom's end of life journey will be so I'm pretty much in the same situation! Trying to be "the perfect daughter" with an "imperfect" mom...Yes, that's how I feel RIGHT now!!!
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im a guy and hospice views me with a tinge of skepticism. ive news for them im front line of a caregiving team and as effective as any of those one hour a week warriors and im not to be bullied. one nurse said id do fine till i had to clean up shit. that was a sexist and ignorant statement and i told her so. i have a very high iq, i think i can wipe an ass..
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Hospice should NOT be telling you that he's bossy and argumentitive. Hospice should be non-judgemental and professional. I work home health and I would NEVER EVER say anything like that to the family. I would see it as a challenge and work my butt off to make my patient as happy and comfortable as they can be. Then I would tell the family, as I was leaving, that it was a pleasure meeting all of them and wish them the best of luck.

"Bossy" and "argumentitve"! Pfffft!
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Sounds like your FIL needs some meds to calm him down, make him more reasonable/compliant. His doctor should be helping you. Your husband should be helping you. Where does it say that only WOMEN get to do this stuff...and be abused for it, too? No where I know of. Sit them down, spell it out, and if they won't help/agree/do what is right for ALL parties, get out. Go to a women's shelter if you have to, but get out.
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What you described is something so many of us experience daily, too, so I am VERY simpatico to what you are going through! Difficult as it may be--and it is very, very difficult--you have to shut out all that babble about "what you should be doing" and "what you are doing wrong". There is no right or wrong way to caring for someone; each of us has their own personality styles. Frankly, I think your style of tough love is EXCELLENT, as that is what I try to give; then my sister undoes it all when she visits on the weekend. Just keep doing what you're doing! Try your hardest to keep reminding yourself that you are doing the very best that you can and these other people don't have a clue as to how difficult, tiresome and all-encompassing it is. Lots of good wishes to you.
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Dina -

Sounds to me that you are doing a wonderful job for your FIL. JeannieGibbs and Dirk hit the nail on the head and I echo their comments.

At least you got some respite care for your FIL. There is nothing better than a break to clear the air and renew your spirit to be able to jump back in the frying pan when he returns to your care.

I'll tell you a little story that kinda addresses this situation. When I was in the final stage of labor with my first child and the baby was descending, I got a little loud and my husband spoke to me rather harshly to get my attention. The Doctor said something to him about the way he was talking to me. My husband replied to the Doctor "You take care of your end and I'll take care of mine". I calmed down and my 8 lb 15 oz baby girl was born a couple minutes later.

So, Dina, just a little line that may help you through the day. God bless you. I said a prayer for you.

Sue
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It sounds like you are doing a great job. Hugs to you.
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yea you have to be careful of hospice. they prefer that the patient is in a facility cause its slightly more profitable for them. the facility staff do a lot of work that hospice would be responsible for in the patients own home. care homes are giving cash kickbacks to hospice organizations who refer patients to them. in 1996 southern care was fined 25 million bucks by the federal government for fraudulent billing for services not rendered and for continuing to bill medicare for services rendered to already deceased people. imo its up to the family caregiver to keep these people on their toes. i told our hospice nurse last week that my mother might have another uti. the nurse was going to prescribe a round of antibiotics without even testing for a uti. evidently the family doc didnt see it that way. he sent the nurse out with a urine specimen bottle and the test came back negative for a uti. ya gotta watch em. they play the hero for one hour a week. we are on the front line every day and night..
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Hey, they don't walk in your shoes. Parents are different with outsiders than with you. My mother takes liberties with me and is sweet as pie generally with others but occasionally they will do something that ticks her off and she gets aggressive. Whenever outsiders, like social workers, etc. try to intervene to "help" me figure out what's "best" for my mother's "safety" I generally tell them no one is better able to know that than me, since I have been caring for her 24/7 for four years. The system tries to manipulate your parent into facilities and they often try to make you feel inadequate to the task. My own experience is that I do a far better job taking care of my mother than anyone else has at an outside facility and since she has been in four different facilities for "rehab", etc. since 2010 and I had to remove her each time in a matter of days because they messed her up, I guess I should know.
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Oh Lori - that is so sad and so wrong! When it is that obvious that the person did not want resuscitation and the POA is IN THE ROOM SAYING "STOP" I would think they were allowed if not obligated to stop! The nursing home is supposed to get that done properly up front upon admission. I suspect the EMTs were quite right that she wa not actually aware or suffering from what they were doing, but still... that's putting paperwork and CYA over human dignity at the very least. My condolences to you on the loss of your mom, and hope that some good memories can come back with time. Here's a prayer you will a) have plenty of time to do what needs done and b) find some good things that remind you of better times while going through that house. When you find some old pictures or objects that bring back a memory, just savor for half a minute if you can, if not, box them up and keep them somewhere, you may be amazed at what comfort it may bring later on. There is the option of getting anything you know you really want and then contacting an estate sale company, they will handle quite a bit at least at no cost to you and then you may have some small amount from the sale itself, though when we did it I was a little shocked at just HOW small. It did not even cover a month's worth of expenses...

I think it is extra frustrating, if that is even possible, when someone TRIED to have all the papers in the right way and still ends up with unwanted CPR and probate.

My heart and prayers are with you, even with the best pre-planning the paperwork does not dry up and go away for quite a while. First you have the notifications of social security, friends and family, then the funeral thank yous, then the death certificate mailing-out....It has been nearly two years for my mom and we still get notices from dad's workplace even though I personally notified several different divisions of my mom's passing, and a company or two persistingly mailing her ads for things she never needed and solicitations for things she may or may not have ever wanted to give to, half of which are scams anyways. For one thing having to do with a (zero balance) credit account, I did end up having to call and notify someone probably over a year after she passed, and the only sweet thing about that was they first offered condolences (most places do that as a matter of course when the death is recent) and you know, I still needed them. I guess there is not a firm "end" to it all, but an evolution of a gradual recovery and feeling like you can come back to life again...after 13 years, if it takes a long time and some help from a real-life support group or even a counselor, you should absolutely get that when you feel even half way ready. There is a lot of support on here and it helped and still helps me a lot to share experiences and give and receive it and that is "real-life" too, but you probably know what I mean.
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Blackcat: Such wise words: "No one gets a dress rehersal for end of life." My mom had been in the hospital with pneumonia for about a week and was transferred to a skilled nursing facility. At that point I really could not handle her alone; it took two move her around for whatever she needed so at least that decision was made for me. And yet I still expected her to improve and did not see her death coming; she passed while I was literally on my way to the facility to visit her. When I got there the place was surrounded by ambulances EMTs, etc. etc. Let my horrible experience be a word the wise out there: you have to have an "Out of Hospital" DNR as well as the usual DNR, medical power of attorney, power of attorney, the entire works. When I got to her room they were shocking her with the paddles; I screamed for them to stop but they would not. One of the ENTs told me "Don't worry, she is already dead," but they said they had to wait for a doctor to call them (CALL THEM!!!!) to "pronounce" her before they could stop, because I did not have the RIGHT KIND of DNR in the file--there was an aide there who was flipping through her file and telling me I had the wrong kind of DNR. This went on for another ten-fifteen minutes; she was on the floor and with every shock her body stiffened and jumped a foot in the air. I was screaming bloody murder and about 4 ENTs were restraining me; I wanted to push them away and was not allowed to. So this is how I get to remember my mom for the rest of my life because I had the wrong kind of paper. "Out of Hospital DNR." Nursing homes are considered "out of hospital." Get one as soon as possible.
---And I am also now going through all of her things and trying to get her place cleaned out, also pretty much alone, except for the people I'm giving things to, and of course they are johnny on the spot to pick up their loot but do not stay to help me with the rest of it. I'm mad too, Blackcat. Really, really, really mad. About all of this, starting with the 13 years of 24/7 care and ending with this horror show and it STILL won't end until I get all of her belongings organized and the estate probated. Those who have never been in this trap have no right to give any kind of advice to those of us who are in the trenches.
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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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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.
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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.
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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.
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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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