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Actively Dying
ThePhotoGuy
Posted: Tuesday, February 5, 2019 8:37 AM
Joined: 1/4/2017
Posts: 66


My father is "actively dying" as hospice calls it at 67 years old. He has been on Hospice since last May. 

 Even to the end he has fought alzhiemers and even at late stages insisted to trying to walk (with assistance). Thursday he was walking around with assistance. Friday he was much weaker but still could walk around a little. Since Saturday, he has stayed in bed which is very odd for him because he always wanted to come into the living room. He was actually saying some words on Saturday. Talking about Heaven and not wanting to leave. He has been mostly unresponse since Sunday. Yesterday, only opened his eyes a few times but never made any sounds.

He is in alot of pain. Any time you touch him he makes a sound of pain. He is on Morphine and Tylenol which does appear to help. 

I don't post much on here but I do check the site everyday. This site has been extremely helpful over the past couple years. 


MN Chickadee
Posted: Tuesday, February 5, 2019 8:52 AM
Joined: 9/7/2014
Posts: 716


Sending thoughts your way during this hard time. You are doing a wonderful thing by being there and helping your dad have a peaceful release from this disease. Stay strong.
jfkoc
Posted: Tuesday, February 5, 2019 9:34 AM
Joined: 12/4/2011
Posts: 16580


I hope we can continue to be helpful.

To hear the words "actively dying" are horrific. At least they were to me. I all but shoved the Hospice nurse out the door.

This can be a very strange time to go through. Denial, relief, sadness, anger....you name it.  It is a time to be with your father and not worry about anything else.

Please let us know how you are ... we are with you.


TessC
Posted: Tuesday, February 5, 2019 11:28 AM
Joined: 4/1/2014
Posts: 4671


This is a hard time, no matter how ready we are to see our LO's suffering end. I hope the good memories you have of your father will buoy you up in the difficult days ahead. We'll be thinking of you and your dear father!
SunnyBeBe
Posted: Tuesday, February 5, 2019 11:30 AM
Joined: 10/9/2014
Posts: 535


I'm so sorry to hear about your father.  That must be so hard.  I appreciate you taking the time to post about your experience.  I think it helps others.  Take care.
Blondie50
Posted: Tuesday, February 5, 2019 2:47 PM
Joined: 2/17/2018
Posts: 113


ThePhotoGuy

So sad for you upon hearing this news, the term "actively dying" must bring with it a flood of conflicting emotions. I will keep you in prayer, and for the peaceful passing of your father.


Stephanie Z
Posted: Tuesday, February 5, 2019 4:56 PM
Joined: 12/15/2011
Posts: 4194


Hi, I too am sorry for your situation. It's so hard when someone we love is dying.

Here is some information I put together a while back about the dying process. ( I was a dementia care nurse for almost 20 years). I hope it helps,

The Terminal Stage of Dementia What Should Caregiver's Do?

https://www.alzconnected.org/discussion.aspx?tid=2147512641&g=posts&t=2147512645

Stephanie Z


AmyJo5
Posted: Tuesday, February 5, 2019 7:46 PM
Joined: 7/28/2017
Posts: 147


Sending thoughts and my deepest sympathy, photoguy. We went through it: everyone on this site we'll go through it. Bless his fighting spirit and your presence with him: the stages you're describing (through just a few days) sound very much like what my mom went through. I believe (my denial?) that she just decided she wasn't going to take it anymore, closed her eyes, and didn't wake up again, though we counted every breath for three days. We did find a way somehow to make the last day/hours of her life sacred: we talked to her and about her; we played the James Herriot audio stories she loved; we laughed and cried and talked to her and each other (brother, sister, me). Her kids. I'm sorry about the pain: can they increase morphine? They gave my mom atavan too (she had been restless). I'm so sorry. This disease is so devastating and I literally feel your pain along with my own grief. Just know there are people here who understand it all. Sending you love and sympathy.
AmyJo5
Posted: Tuesday, February 5, 2019 7:49 PM
Joined: 7/28/2017
Posts: 147


jfkoc,

I had to laugh about the hospice nurse comments. They were trying to be kind but I was like you, wanting to lock them out and yell during the toughest longest last day. We made an abashed donation afterward. They did keep the coffee coming. Sigh.


cook65
Posted: Tuesday, February 5, 2019 8:40 PM
Joined: 8/16/2012
Posts: 3


my mom recently broke her hip, had surgery, and went to rehab. But after 3 weeks, they said she won't progress any further. We have to move her from the memory care unit she was in to a nursing home. She has pain from the injury, is no longer in a place familiar to her, and is not communicating much. I can see she is not happy.

For the first time since she was diagnosed years ago, I see her declining to a point where I can see the end is near. While i don't want her to suffer, i am profoundly sad and have been crying every day for 2 weeks now.

I knew this day would come, but thought i had more time with her. 'Actively dying'.  I can relate to what that means. I don't know how I'll get through it. Tough when you don't have a support system. 

Hopefully this will be mine.


TessC
Posted: Tuesday, February 5, 2019 10:39 PM
Joined: 4/1/2014
Posts: 4671


cook65, sorry to hear you do not have support for you and your dear mother. Yes, we will be your support. I hope your mother begins to feel more centered and |at home" in the new facility. It takes times to adjust.

  My mother has been on hospice for several years now, so obviously getting on hospice doesn't mean the person will die right away. They may accept your mother and give you extra assistance and support. If you think your mother has declined to the point where she would benefit from their services-check them out. I have been very pleased with our hospice. (PS not all hospices are created equal however, so shop around if you decide to call them in.)


Victorymld02
Posted: Tuesday, February 5, 2019 11:53 PM
Joined: 2/5/2019
Posts: 1


Hello, I’m new here to this wonderful forum. Keeping you and family in my prayers, it has to be hard to watch him slow down day by day. Just keep the beautiful memories of you and him alive in your heart, talk to him about the amazing moments that you’ve both had Including funny ones. I’m saying all these because my dad almost died a year ago and I did the exact thing that I just mentioned and it worked. Stay strong and keep up the Faith
Sayra
Posted: Wednesday, February 6, 2019 5:18 AM
Joined: 8/10/2016
Posts: 1257


(((Photoguy)))
EN85
Posted: Wednesday, February 6, 2019 11:23 AM
Joined: 1/10/2019
Posts: 48


My thoughts and prayers are with you. My dad was in hospice care for 67 days before he passed in 8/18. You know that hospice is end of life care, but nothing really prepares you for the days and nights that you're going through right now. You have my deepest sympathy. I am sending positive thoughts and prayers of strength your way.
ThePhotoGuy
Posted: Wednesday, February 6, 2019 2:55 PM
Joined: 1/4/2017
Posts: 66


Thank you all for the concern, thoughts, and prayers. I know my family is appreciative and if my dad knew, he would be too. As you can see from my previous posts over the years, it has been a hard journey for my family.

Morphine has been gradually increased again, a second time, since he started using it on Sunday. He also has had a fever the past couple days and Tylenol helps lessen it some.

We have his favorite blankets around, 70s rock music that he loved playing, & fragrances that he always enjoyed.

He hasn't eaten since Friday. Most of fluid intake stopped Saturday. 

Also, thank you for posting the link. I will check it out.

Thanks again all. 


yarnball
Posted: Wednesday, February 6, 2019 6:36 PM
Joined: 7/9/2017
Posts: 19


You are in my prayers.  Here is a {{hug}}.

I am so very thankful for this forum because we are able to relate to one another's experiences.  And by sharing to help others, it makes my heart a little less heavy.

 

 

 

 

 

 

 


NC caregiver
Posted: Thursday, February 7, 2019 7:49 PM
Joined: 2/7/2018
Posts: 846


I'm thinking of you & your family.  Praying for peace & freedom from pain for your Dad and for anyone else out there who is at this stage with your LO.  So heartbreaking.
ThePhotoGuy
Posted: Thursday, February 7, 2019 8:35 PM
Joined: 1/4/2017
Posts: 66


Thanks again all.

My father is a fighter till the end. Still fighting. 

The increase in morphine yesterday has seemed to help a lot. Have stopped Tylenol because he can't swallow that thick of a liquid and started to choke.

Just a week ago today, he was walking around the house assisted and now to see him like this. 

Such a painful couple of days. So sad to see this happening to him.  


jfkoc
Posted: Thursday, February 7, 2019 9:33 PM
Joined: 12/4/2011
Posts: 16580


He was checked out for something like  UTI (with culture), yes?
MPSunshine
Posted: Friday, February 8, 2019 1:31 AM
Joined: 5/21/2016
Posts: 1930


So sorry.
ThePhotoGuy
Posted: Sunday, February 10, 2019 2:02 PM
Joined: 1/4/2017
Posts: 66


Not sure how he is doing it but my Dad is still hanging on. It has been an exhausting week.

 

No food since Friday (Feb 1) and that was only an Ensure & Banana. He only had water and grape juice on Saturday (Feb 2). Some small syringes of water (less than 2 ML) Sunday (Feb 3) & Monday midday (Feb 4).

His fever got really high on Friday 103/104. He started having seizures. Had at least 18 in about 5 hours. Liquid Ativan was prescribed and immediately had an effect and stopped the seizures. Morphine was also increased again.

Even with the morphine increases he is still in pain if you try to move him around. He is having some discharge coming out from his rear (not urine and not diarrhea like). Pressure sores have also developed.

My dad looks like a skeleton now. It is so sad to see him like this.

I am going to talk to the Hospice nurse to see if there is a better medicine than Morphine because I don't feel like it is working.  


MacyRose
Posted: Sunday, February 10, 2019 2:32 PM
Joined: 12/15/2011
Posts: 3849


So sorry about what you are going through. When my mom was dying it was just the worst time. Be sure to tell you father all that is in your heart now and then give him permission to go.  That is the last gift we can give our parents.
Acoxe3
Posted: Sunday, February 10, 2019 2:41 PM
Joined: 2/9/2019
Posts: 84


You are on my heart. I’m so sorry for what your dad and family are going through.  Thank you for being so selfless in sharing with us during this horrible time.  I am new to this site and am so blessed and thankful for the giving and tender spirit of all who have shared their pains and struggles.  I pray you will be held and comforted during this time.
NC caregiver
Posted: Sunday, February 10, 2019 4:15 PM
Joined: 2/7/2018
Posts: 846


I'm so sorry your Dad & you are going through a this . Praying for peace .  We are thinking of you.
jfkoc
Posted: Sunday, February 10, 2019 4:23 PM
Joined: 12/4/2011
Posts: 16580


love to you and your father.....thank you for taking the time to update us
AmyJo5
Posted: Sunday, February 10, 2019 6:20 PM
Joined: 7/28/2017
Posts: 147


Continued love to you and your father. I am so sorry for what you are both going through: the prolonged agony. Breathe deep and I hope you feel us around you.
AmyJo5
Posted: Sunday, February 10, 2019 6:21 PM
Joined: 7/28/2017
Posts: 147


So sorry for you too, Cook65, and your mom. We are here to support: a lot of hurting, loving people relying on each other virtually. I send you a hug.
DLS1
Posted: Sunday, February 10, 2019 6:36 PM
Joined: 11/16/2018
Posts: 12


My heart breaks for you. Tell him you love him - and give him permission to go?  I think sometimes they wait for that.
Daughter in Florida
Posted: Sunday, February 10, 2019 10:35 PM
Joined: 4/15/2018
Posts: 71


So sorry for the pain you are going through. I know that this experience will be mine soon, as my mom is in late stage dementia. Everyone’s comments here are helpful and I hope you are drawing strength from them. Prayers for him to be pain free from now until his passing.
ThePhotoGuy
Posted: Monday, February 11, 2019 5:46 PM
Joined: 1/4/2017
Posts: 66


I am truly grateful for all your thoughts, prayers, and concerns.

 

Somehow he is still fighting this awful disease.

His pressure sores are getting worse and more widespread. We were able to place more  foam bandages to help protect the wounds. One started to bleed today. The hospice nurse said his skin is just basically decaying around him. Most of the pressure sores are not on parts he is laying on but it is just the bones are rubbing the skin because he has zero body fat.

Ativan and morphine were increased again. His breathing was very rapid and loud earlier and the increase in medication has seemed to calm his breathing but it is still loud. 


pidgeon92
Posted: Monday, February 11, 2019 6:46 PM
Joined: 10/25/2018
Posts: 190


Poor man, I hope his suffering ends soon.
When my father was actively dying, his breathing was rapid and loud as well. Fortunately he was only in that state about two days. Once the pneumonia really took hold, he was gone in less than a day.

 


ThePhotoGuy
Posted: Tuesday, February 12, 2019 7:48 PM
Joined: 1/4/2017
Posts: 66


My father, Rick, 67, passed away at shortly before 4 PM this afternoon after courageously  fighting Alzheimers for the past few years. Even to the end he was a fighter and not wanting Alzheimer’s to win.

My father loved to walk at Fort Smallwood Park daily as a member of the "Walking Club." He loved Mexican food, cheesesteaks,  and anything seafood related. He loved to visit the Outer Banks, Patapsco State Park, Assateague,  and Florida looking for beach glass and seashells. He was an avid vegetable gardener who built gardens longer than the side of the house!

He didn't deserve to suffer from such a ruthless disease. I hope that he is finally at peace after suffering for so long.

 

-------

I do think the medicine increase yesterday afternoon made him finally at peace and not in pain but it took way too many days for him to get him comfortable. I am upset with Hospice that it took that long to get him in less pain.

I am also upset that the medical supply company called 40 minutes after he was formally pronounced, calling to schedule a pickup. How insensitive!

Again, thank you for all your prayers, thoughts, and concern during this very sad time. 


MacyRose
Posted: Tuesday, February 12, 2019 9:16 PM
Joined: 12/15/2011
Posts: 3849


Our situation with medical supply was the opposite of yours.  We could not get them to come take away the bed and dad was home having to see it each day for weeks on end which was distressing to him.  Seems no matter what, it is always a nightmare somehow.

My deepest sympathy for your loss.  I hope your father is on a beach somewhere in Heaven having a great time, picking up sea glass (especially red - the most valuable) and all kinds of beautiful sea shells and eating some fantastic seafood.  

You could not have done a better job as your dad's caregiver.  He was very lucky to have had you.  


TessC
Posted: Tuesday, February 12, 2019 10:33 PM
Joined: 4/1/2014
Posts: 4671


Your father, Rick, was so young. I'm very sorry that this horrible disease took the life of another fine, beloved person. He must have felt blessed to have raised children. I hope you will be able to find peace in the days and weeks ahead knowing your father was loved and gave love, and had found joy in the small things that made his daily life fulfilling. Take care and God Bless you, your family and father.
Relocated Daughter
Posted: Wednesday, February 13, 2019 3:59 AM
Joined: 7/21/2017
Posts: 112


Thank you for sharing with us a glimpse of who your dad was and the things he enjoyed in life. May all those wonderful memories you have of your dad gardening, visiting the beach, and simply being with you help you through this difficult time. I hope you find some peace in knowing that he is finally out of his pain. Sending prayers your way.
 
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