Father in Hospice, and I feel alone in this whole process. Any advice?

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My father is currently in hospice at home living with his ex-wife and my brother. Without putting all my families personal business out there, let's just say, having pain medication easily available to them all is not ideal. I work full-time and go to school, so I am unable to have him live with me and take care of him. My mother, his ex-wife, has hired a CNA to help him during the day while she is at work, then she takes over when home from work. I go down when I'm not in school or work to help as much as I can, however I can't be there 24/7. My father is extremely aggressive. He has bit, pinched and hit my mother. He even went so far as to rip his catheter out. He screams at the top of his lungs at night, tries to jump out of bed and gets extremely violent with everyone when you try to get him to sit back down. He's prescribed Ativan and Haloperidol but these do nothing at night time. We've called Hospice about all of this and they just say to soothe him. I get the impression they don't really understand how aggravated he gets. One nurse came by the other day, and my father was moving around in bed and pulling on the sheets a little. The nurse said that he was aggravated and to watch her soothe him... THAT was not aggravated. I told her that was just his normal demeanor. I don't know what to do, and honestly I don't know what options there really are. I guess I just need someone to hear this and maybe they've experienced the same thing? So many people told me that the Hospice nurses were great for support, but that is not my case. I feel like I've been fighting everyone since he was admitted to the hospital for a stroke. I had to fight the doctors to talk to me, the nurses would leave him hanging off his bed with his medicine machine dinging, I had to get the palliative team together for answers, and I thought once I got to talk to hospice this wouldn't be so difficult. I was so wrong!

6 Comments

Your mother should not tolerate being hit, pinched or bitten. And how about the CNA? Is s/he experiencing similar behaviours?

Talk to the hospice providers again. They should know better than to suppose that the one nurse's one experience is representative of your father's challenging behaviours. If you can get some of them recorded so much the better, of course; but in any case keep pushing - it's the squeaky wheel gets the grease. Feel no shame, and don't despair.

Are there facilities he could in theory be admitted to? How did your mother get stuck with him?
If they don't act, fire them and hire another hospice. Get someone to video the out bursts. Hospice is suppose to make them comfortable, he obviously is not. From your post I read between the lines that he may not be getting all his meds to himself, hospice does monitor controlled substances and this might be the issue. Getting that much morphine there is no way he is being aggressive, he is knocked out all the time. If I am incorrect in my deduction I appologize, if not, someone needs to intervene, your mom, you and your dad deserve better care than sharing allows.

God be with you, this cannot be easy. Hugs and love 2u
Countrymouse, thank you for your response. No one is experiencing these aggressive outbursts other than me, my mother and occasionally my brother. Mainly because during the day he is mostly sleeping and only gets like that after probably 8pm, and gets more and more aggravated the later it gets. As for a facility, we don't have the money as a family to afford in facility care and we are working on getting him Medicaid, however everything I've read says it takes a while to get approved, if he can. My mother takes care of him mostly because he wanted to be at home and really there was no other option, according to Hospice.
Isthisrealyreal, thank you for your response. I will definitely start videoing the outbursts. They hadn't put him on the liquid morphine until this past Saturday, after a week on hospice. They were prescribing him Methadone and Oxycodone. They informed us Saturday that they were taking him off those meds, and now just to use morphine. My hope was that the aggression and outbursts were due to all the changes in the past week, then the med change, but as of right now there is no sign of change in behavior. Maybe I'm jumping the gun and need to give more time? I just hate seeing my father this way and I hate that my mother is struggling. Thank you again!
Your father is experiencing violent behavior which is beyond yours and his control so he has to be placed somewhere where it can be controlled. call the Hospice on call nurse when he is at his worst, yes even in the middle of the night.
Tell them you want him to be admitted to a facility immediately, not tomorrow or next week because he has become a danger to himself and others.
If they refuse and they may call 911 yourself and request police and ambulance and they will take him to a secure psychological facility for a 2 day evaluation which can be extended if necessary. It may be possible to control his behavior with the proper medications in which case he could be returned home if you so wish. otherwise he will be transfered to a memory care facility where he will be kept safe. As you are already applying for medicaid he will probably be admitted "Medicaid pending" which means the facility will be paid once it is approve which i believe usually takes a couple of months. medicaid will pay from the time the application is made. Make sure no one signs anything that assumes responsibility for payment of his treatment. If Mom signs as POA make sure it is just permission to treat not pay. You can cross anything off any form you are even to sign. Just cross through that paragraph and sign that area. get copies of everything.
As this just occers at night it sounds like a version of sundowning and is not his fault It is just a manifestation of the disease. You can't soothe someone who is behaving in this way and my guess is that this particular nurse is inexperienced in dementia
care. Dementia is not one of the primary reasons a patient is admitted to hospice so i would not expect the nurses to be very experienced in that area.
You may have to be very agressive in fighting for your Dad's proper treatment or at least his wife will as she is the one primarily responsible.
Veronica, great advice. You obviously have some experience.

Bunstein, I have read on this site that there are non-profit hospice facilities that do not charge the family for the facility and insurance pays for the hospice care portion. Sometimes we can not give our loved ones what they want. It is hard and heartbreaking to say no in this situation but, if he is being harmful you and family must protect yourselves from who he has become. Know this is the disease and not your dad.

I hope you find a solution soon. Maybe adjusting the schedule of meds? Hugs 2u

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