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  • I'm very confused about the role of Hospice

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    Old 04-07-2016, 04:33 PM   #1
    lmkoza
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    I'm very confused about the role of Hospice

    Hi, I'm a caretaker for my dad, he's been on hospice since February 23rd, 2016. I have moved into his home. I'm writing in this forum today because I find the amount of hospice care that my dad is getting to be a little pushy and aggressive. The aides act attached, and frantic to feed him....and I find it weird. But let me first share a little history about our family, and my dad's condition. Sorry, this will probably become long winded:

    My dad will be 85 this coming Sunday, and has had Dementia for about 10 years now, starting slowly of course. He also has diabetes, lost some of his bowel a few years back, and had a heart valve replacement (pig) 10 years ago. We lost a lot of family members this past year, my 2 brothers last April (ages 52 and 54) due to one with cirrhosis (he was in hospice in a facility) and the other heart attack in his sleep while brother 1 was in hospice. They died a week apart. Then my mother died 2 months later in June, to a heart valve surgery gone wrong. She was 80. I have no more siblings, and it's just me caring now for my dad. After all our loses, I tried getting my dad in assisted living (my mom made me promise I would), but he wanted to live on his own. I gave him a few months doing so, because I understood that desire, but after coming over to find him eating moldy rolls, almost burning up the microwave and also drinking an entire bottle of cinnamon scope (because he thought it was red juice).....not to mention taking off in his van for 24 hours and me having to file a missing persons report.....it was time to do something. It was way past time to do something! This was December of last year. I brought him into the ER because he was confused, extremely tired, and had fallen. They admitted him for 3 nights. He then went to rehab in a nursing home, was there for 5 weeks. He refused to do the rehabilitation and hardly ate, and so I then got him into an assisted living place. He was there for 3 nights, refused to eat and drink. I had him rushed back to the hospital for dehydration. Was there 2 nights, then they released him, and I had another assisted living place set up, thinking maybe he just didn't like the first one. He was there for 2 weeks before they kicked him out. He refused to go to the dining room, refused to eat, wouldn't drink, and they diagnosed him with extreme depression. Soooo, back home he came.

    I was coming daily to see him, to cook for him, to give him water, coffee....but all he wanted to do was sleep. He became completely bedridden, unable to walk at all. I ended up moving in at that point. I called his Dr. about what to do, and if I should consider hospice.....it was a yes. He was signed up that week. I was, at that point, very relieved to receive the help, the aide from Hospice. But, as this rolls on, now a little over 6 weeks into it, I'm confused at their (hospice's) mission. I get the going off the meds, I get the idea of keeping the patient comfortable. All good. I understand his near the end of his life, and quite honestly, all I want for my poor dad right now is for his pain to be over with....which brings me to my confusion. They (hospice) are really aggressive with their pushing food, pushing water, pushing suppositories! Today, the aide actually woke my dad up to feed him, and push water on him. She woke him from a deep sleep, by using a cold washcloth to arouse him enough to feed him and force numerous sips of water down his throat. I asked her, I thought you're about comfort? The guy was sleeping comfortably, why are you waking him up so you can feed him? She just shrugged her shoulders. I had another instance where another aide was spoon-feeding him pea soup while has in and out of sleep. He was feeding it so fast, and pushing at his closed lips to force it down him. Other aides bring him food, cookies. That's sweet and all, but what's happening here? I ask my dad, are you hungry? If he says yes, I feed him, if he says no, I don't. But waking him up to feed him? They act like they're terrified he's going to die! Another aide was actually telling him he shouldn't give up, it doesn't have to be like this ?! I also had an instance this week where I asked them to Not give my dad a suppository because last time he was in such pain afterwards, such cramps, he was moaning loudly for 2 hours in dire pain. They ignored me, and did it anyway. My dad was Not complaining about constipation, he was eating fine.....why force that?? Why treat him? Am I wrong in my ideas here? Why prolong this? Why not let nature go it's course? Are there legal issues involved? Sorry, I just don't understand. I have told them how I feel, actually I told them that after one aide gave him a Boost. I'm like, why are you feeding him life sustaining protein drinks, which gave him severe diarrhea? If your last days are about eating anything you want, and drinking anything, why give him this crap??

    I really don't want to come across as a heartless person, it's just that I don't get why they're so pushy, frantic.....aggressive with the care. That's all. Should I shop a new hospice group? Should I just take him off and take care of things myself, and hire outside aides? Or is everything exactly as it should be?

    Thanks for listening!

    Last edited by Administrator; 09-18-2016 at 09:24 AM.

     
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    Old 04-07-2016, 07:28 PM   #2
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    Re: I'm very confused about the role of Hospice

    Dear Koza,

    How awful that you and your father are going through that experience. It should not be so.

    If you were given legal responsibility to make your dad's decisions and have control of his affairs, then yes you have every right to tell anyone to not come back. Be gentle, though. Thank them and just say you have made other arrangements.

    It seems you do have legal responsibility in that his doctor lets you make decisions. So if you do, yes you can make the decisions, and get some hospice help elsewhere. Make sure to interview to be sure they understand that you are making decisions, and do not want interference with forced feeding or medication unless approved by you in writing. You may want to speak to his doctor as well and explain what has been going on and what you want.

    I did hospice care, myself, for a period of time. We were not trained to interfere with family wishes. I was present with three different lovely people and their families while they passed from this life. The family's wishes are to be definitely respected.

    On a personal side, my mother had a do not feed or resuscitate directive and yet after mom became unable to swallow and was near the end of her life, one nurse took it upon herself to insert a feeding tube directing into mother's stomach wall. Mom ripped it out herself. The nurse cried and tried to reinsert the tube, and we were informed and asked by the head nurse what we wanted to do.

    We insisted that mother's wishes be respected and that the nurse that was unable to control herself to be restricted from our mother. Some pain med was administered and Mom then died peacefully a couple of days later.

    If your father needs pain med to be comfortable it might be time to get his hospice care in a facility. His doctor should be able to help you with making decisions.

    My heart really goes out to you in this trying experience!

    Love,
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    Last edited by yayagirl; 04-07-2016 at 07:30 PM.

     
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    Old 04-07-2016, 10:21 PM   #3
    lmkoza
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    Re: I'm very confused about the role of Hospice

    Hi, and thank you for taking the time to respond. I really thought I'd get slammed for what I wrote and how I feel about this situation....so I do appreciate your kindness. Yes, I am the only POA, I'm listed solely on the advance directive and he has a DNR in his file.

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    Originally Posted by YaYagirl View Post
    Dear Koza,

    How awful that you and your father are going through that experience. It should not be so.

    If you were given legal responsibility to make your dad's decisions and have control of his affairs, then yes you have every right to tell anyone to not come back. Be gentle, though. Thank them and just say you have made other arrangements.

    It seems you do have legal responsibility in that his doctor lets you make decisions. So if you do, yes you can make the decisions, and get some hospice help elsewhere. Make sure to interview to be sure they understand that you are making decisions, and do not want interference with forced feeding or medication unless approved by you in writing. You may want to speak to his doctor as well and explain what has been going on and what you want.

    I did hospice care, myself, for a period of time. We were not trained to interfere with family wishes. I was present with three different lovely people and their families while they passed from this life. The family's wishes are to be definitely respected.

    On a personal side, my mother had a do not feed or resuscitate directive and yet after mom became unable to swallow and was near the end of her life, one nurse took it upon herself to insert a feeding tube directing into mother's stomach wall. Mom ripped it out herself. The nurse cried and tried to reinsert the tube, and we were informed and asked by the head nurse what we wanted to do.

    We insisted that mother's wishes be respected and that the nurse that was unable to control herself to be restricted from our mother. Some pain med was administered and Mom then died peacefully a couple of days later.

    If your father needs pain med to be comfortable it might be time to get his hospice care in a facility. His doctor should be able to help you with making decisions.

    My heart really goes out to you in this trying experience!

    Love,

     
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    Old 04-10-2016, 10:32 AM   #4
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    Re: I'm very confused about the role of Hospice

    Dear lmkoza,

    Nowadays most people understand end of life hospice care, thankfully.
    Thanks for letting me know how you are doing.

    My heart goes out to you in this difficult time.

    Love,
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    Old 04-10-2016, 03:22 PM   #5
    MSNik
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    Re: I'm very confused about the role of Hospice

    Hi there. I just wanted to say that you are correct. Hospice is supposed to be comfort measures only...and although no hospice aide or nurse would ever starve someone or withhold fluids, they are not supposed to force them on anyone either. My advice to you is to immediately call the hospice company and ask to speak to the Nursing Supervisor. Let her know what you told us and ask her why this is happening. My guess is she has no idea that her people are doing this.

    You also have the right to make decisions legally from what you wrote, therefore if you want to state that he is not to be fed unless he is awake- and then only if he takes it willingly when the attempt is made- that is your perogative. A good hospice nurse will never force food on someone who is against eating, but an untrained aide might...see where I am going with this?

    I am very sorry for your loss. You have been through quite a bit and I commend you for taking control of this situation.

    Best to you..
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