My Father is in hospice has congestive heart failure. I need help understanding what little info I get.

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I am close to where my Dad and Mom are staying in a senior living facility. My Dad is in hospice, due to a fall when he left the facility without his walker and staff did not see him exit.


He has congestive heart failure, but I am not the primary POA for health care, my sister is and she is in Idaho 6 months and out of the country in winter. She won't give me the information from the hospice nurse, and the coordination between hospice and this facility stinks.


At my last visit his last reported by was 107/53 with a pulse of 71. He has AFIB and that makes his heart beat high. He is cyanotic, mostly in the legs. I don't know how bad this is. My sister won't respond to my questions. Can anyone give me a general idea? My Mom is there but has dementia and can't remember anything and I can't read her notes. I need to be better informed. Thanks for any help!

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Yes any updates would be greatly appreciated. God bless!
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Bucketnut,
How is your Dad doing?  Have you been able to visit him by yourself while your Mom is out of the room?  Please let us know what is going on.  {{{Hugs}}}
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Is there anyway the hospice nurse (or facility nurses or CNAs) can take your Mom out of your Dad's room for 30 minutes or so to allow you some "alone time" with your Dad?  Tell the nursing staff that you would like to spend some time alone with your Dad and ask if they would be willing to take your Mom out of their shared room while you are visiting your Dad.  Maybe to an activity in another part of the building?? You may have to "hide" from your Mom until the staff is able to get her out of the room and then go in to visit your Dad.  Then when/if your Mom comes back into the room while you are still there, you can say that you stopped by a couple of minutes ago.
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DeeAnna,

Your answer was really helpful on the defibrillator episode. I am going to keep tabs on his blood pressure. While my Mom is sometimes in the room when the hospice nurse is there she can't remember to takes notes or she can't read them later (nor can I). My Dad does have a DNR so that is where we are. It's just horrible to watch.

My Mother is so loud and only wants to talk about politics and my job, which I really don't want to talk about at any point. I just want to focus on Dad. She only is interested in what she wants and doesn't understand what you say to her and you have to repeat everything and she doesn't get it. I usually have to get her out of the room so my Uncle can have a conversation with my Dad and I get very little time with him. I find myself being resentful that she is taking this time away from me. I know she can't help it, but my patience is wearing thin. My siblings dial it in once a week, if that. I resent the fact that they don't come and take a turn for a while. Anyway, I am whining. Back to work.

Thank you for your explanation, it is really helpful
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Great thoughts DeeAnna. This would be a great help. Thank you.
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Bucketnut, as you have witnessed, having the defibrillator "shock" your Dad is terrifying to see and not appropriate treatment for someone who is on Hospice and near the end of their life.  I assume that your Dad is a "No Code" or "DNR"/"Do Not Resuscitate".  The implantable cardioverter-defibrillator (ICD)that your Dad has needed to be turned off as it basically was performing CPR with each electric shock.  When a person is dying (and their body and heart are dying), the body will no longer respond to the defibrillator's shocks.  But the defibrillator does not know that the person is dying or even dead and will keep trying to keep the person "alive" by shocking the person repeatedly until the defibrillator is shut off.

An arrhythmia is any disorder of your heart rate or rhythm. It means that your heart beats too quickly, too slowly, or with an irregular pattern. Most arrhythmias result from problems in the electrical system of the heart.

A PACEMAKER helps control abnormal heart rhythms. It uses electrical pulses to prompt the heart to beat at a normal rate. It can speed up a slow heart rhythm, control a fast heart rhythm, and coordinate the chambers of the heart.  A pacemaker does NOT SHOCK the heart at any time.  It only uses a tiny electrical impulse to "remind" the heart to beat. 

This article "Do pacemakers work even after death?" gives a good explanation of how the pacemaker works when someone is dying or when they die. ~
scienceillustrated.com.au/blog/medicine/ask-us-will-pacemakers-still-work-after-death/   (Copy & Paste to your browser.)

In regards to your Dad's low blood pressure, that is common in people who are dying.  Their heart is not pumping as hard as it used to so the pressure of the blood pumping through their blood vessels is not as high.  Eventually your Dad's blood pressure will be too low to hear or maybe even to feel.  The lower the blood pressure the sooner death might occur.

I am so sorry that you are having to experience this.  If you have any more questions, please feel free to send me a message on my Profile Page.  Dee Anna

{{{Hugs}}} and Prayers ^^ & ^^   
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I can't be certain why they disconnected the defibrillator. It had something to do with an irregular heartbeat and the pacemaker was shocking him. I saw two incidents of this and I thought he's was going to pass right there. He went totally rigid, and made noises like he was in pain. He said he couldn't move. It took a while, then he could move his arms. The Med tech was very cavalier about the whole thing. She did not see the incident, but she said it had happened before, like no problem.

When the hospice nurse got there she saw completely different behavior due to constipation. They prescribed a glass of prune juice a day and since then he hasn't had another shock incident.

I am concerned about his low blood pressure. I have to call the hospice staff and get more information. I am under pressure at work and have deadlines to meet .

Your responses are really helpful. Thank you so much!
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Did the doctors unplug the defibrillator attached to your father's pacemaker so that it (the defibrillator) cannot give “shocks” to your father’s heart or was it the pacemaker itself?
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Thanks for the resources! Yesterday I got the facility to give me the number of the Hospice agency and I will call them so I can get updates and ask questions. The last notes I have were, his blood pressure was 107/53 which seems really low to me. His legs are purple and retaining water. They have unplugged the device for his pacemaker.

For my Uncle, I am his POA. Although he is really secretive about everything I haven't seen his health directives. All I was told is "I have to do what the doctors tell me to do." But, my Father was this way, so it is not any different with my Uncle. It was they way they were brought up. They just don't talk about these things. But, he knows I am here for him.

Thanks for your help!
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A question based on your Profile:  Since you live with your Uncle, do you have POA and POA-Healthcare for your Uncle (or does he have any children who are his POA) in case he becomes ill and needs to be hospitalized?  With your Uncle starting to show signs of Dementia, you might have to rethink your living situation.  Have you talked to anyone in Kitty Hawk, NC about jobs or job training?  Could you get disability because of your depression?

I am so sorry life has been so rough for you.  I hope that you can find some relief and comfort during the next few difficult months.

The hospice nurse is the person that you need to talk to about your Father.  If you want to do an internet search, here are some websites that I have found: 

https://dying.lovetoknow.com/Hospice_Signs_of_Dying

https://www.crossroadshospice.com/family-caregivers-blog/2017/february/16/end-stages-of-heart-failure-what-to-expect/
"What Do Symptoms of End Stage Congestive Heart Failure Look Like?"
 
"Imminent death is a very active process that lasts from hours to days. The dying phase is influenced by the type of terminal illness causing death. For example, a person with congestive heart failure may experience significant chest congestion related to the accumulation of fluid because of their heart disease or someone with dementia may slip quietly into a coma.  Common signs of...that the person will die soon are listed below:..."
{See website: https://www.sharecare.com/health/health-care-basics/what-are-the-signs-of-imminent-death}

God Bless.  {{{Hugs}}} to YOU!
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