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Avatar universal

I'm confused about the actual 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 slightly 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.....and how not eating is suicide.  ?!  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 and please guide me.  
1 Responses
Avatar universal
Your an amazing daughter and person. I took care of my Mom and when my Mom couldn't get out of bed and it was hard to change her when she had a bowl movement. She was in so much pain when I had to move her. I told my brother to call hospice and have her admitted. The day before they gave her 3 enemas and she was screaming in pain. My Mom's foot was black and they wanted to amputate her leg at 86 and she said no. I thought she would be better off in hospice where they could change her better than I. She was in hospice care 3 hours after my brother made the call and they started giving her 10 times as much morphine as we gave her at home. My brother had her change her will the day before she went into hospice and that is why I think he hesitated in calling hospice himself and he knew  medical stuff after working in a hospital for 30 years thats another story. My brother died a year after my Mom and I was shocked by that. I know how hard it is to take care of a sick parent and I myself didn't like one hospice nurse because she was rude and I just got a bad feeling about her. I think you have done as much as you can and more than most people. Maybe it's time to get him into hospice and ask them not to force feed him. I am so sorry for the loss of your family members and you need to take care of yourself. After I took care of my Mom I started having seizures and I think the first one was due to exhaustion. I couldn't sleep hearing my Mom moaning in pain at night and I think she knew I was always sitting by her or standing in the door to her room. The one night I went into the guest room to try to sleep she called out my name and I said yes Mom and she said go back to sleep. She was checking to see if I was still there. Like I said take care of yourself and take time to mourn those you loved. If you feel alone there are support groups that can help in person and on line. Let me know how things are going.

Take Care Mia in Miami
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