Dad Update (new update in first post on 12/13) (and 12/30)

[fraidycat]

You are not a bad daughter! You have done everything in your power to care for him through many stages since your mom has passed. Moving him closer to you, then IN with you, then to different facilities that could better meet his needs as he progressed through his end stages.

You've been a wonderful daughter and you deserve time with your family and rest, too.

[LifeLovePassion]

You are not a bad daughter. You are doing the best you can do amidst difficult circumstances and a full plate of motherhood. 

[porque?]

Wishing peace and comfort to you, your father and your family. 

[Faith-manor]

2 hours ago, DawnM said:

I am probably going to out myself as a bad daughter, but I am not spending every minute with him.   I can't.   I have a family to care for, and he is so confused and keeps taking all of his clothes off.  I visit, and then come home.

You are NOT a bad daughter. Life will go on when dad is gone. Relationships continue when dad is gone. The trauma of all of this can harm those relationships if you don't get down time from it.

Take it from someone who has experienced this in a much similar scenario. Be kind to yourself. Take care of your family.

[Melissa in Australia]

Huge huge hugs

 

[TravelingChris]

7 hours ago, DawnM said:

thank you all.   I pray it is only days.   He stopped eating a couple of days ago I guess is what they said, so this is day 3 or 4 of him not eating.

The ladies from my parent's mission called this am and asked how they could pray for us.   I asked them to pray that the Lord would take him home to his glorified body and no more pain.

It doesn't feel as odd to pray for that anymore.

You said the changed hom from codeine to morphine.  Unless they upped the dose of morphine, it is the same amount of pain medication.  Pain meds are all measured by MME (morphine milligram equivalants). The CDC in 2016 put out a bogus chart about safe limits for morphine and they have had to relax it 2x sp far in recommendations- first for cancer and short term terminal and just this year, had to say that their 2026guidelines don't apply to many people and doctors should consider individual patients

Edited December 28, 2022 by TravelingChris

[TravelingChris]

2 hours ago, fraidycat said:

You are not a bad daughter! You have done everything in your power to care for him through many stages since your mom has passed. Moving him closer to you, then IN with you, then to different facilities that could better meet his needs as he progressed through his end stages.

You've been a wonderful daughter and you deserve time with your family and rest, too.

Totally agree

[TravelingChris]

6 hours ago, Mrs Tiggywinkle Again said:

Don’t be afraid to advocate for increased pain medication either.  Comfort is the most important thing right now.

 

Yes, yes, yes.  

[DawnM]

1 hour ago, TravelingChris said:

You said the changed hom from codeine to morphine.  Unless they upped the dose of morphine, it is the same amount of pain medication.  Pain meds are all measured by MME (morphine milligram equivalants). The CDC in 2016 put out a bogus chart about safe limits for morphine and they have had to relax it 2x sp far in recommendations- first for cancer and short term terminal and just this year, had to say that their 2026guidelines don't apply to many people and doctors should consider individual patients

This article seems to indicate that morphine is far more potent.   I always thought it was more potent.  This article says 7-14 times more potent.

https://jpet.aspetjournals.org/content/156/1/101

[YaelAldrich]

Dawn, I want to reiterate what everyone else has said.  You are a GREAT daughter and you have done so much for your father and you should praise yourself for it.  I pray for you all peace and compassion for all involved and an easy passing in a good time.

[TexasProud]

Dawn,

I am so glad that you were able to get your dad in a facility that seems to be really good.  I know it isn't easier, but it will be easier than you trying to juggle everything at home.  And do not feel guilty for not being there 24/7.  In fact, you will be a better daughter by taking care of yourself and your family and being really present when you can go.  You are doing such a good job.

Praying he goes to his heavenly home soon.

Sorry you are going through this...

[DawnM]

18 hours ago, Mrs Tiggywinkle Again said:

Don’t be afraid to advocate for increased pain medication either.  Comfort is the most important thing right now.

 

Thanks.   I won't.  The hospital was giving him NOTHING.   I begged the doctor to give him something and the doctor argued with me.   I told him to talk to the nurses, he was in extreme pain when they had to move him.   He said, "Well, I just saw him and he said he wasn't in any pain."   I explained AGAIN that he was in pain.   

Thankfully it appears that the nurses in the hospice are acutely aware of his needs and have been so wonderful so far.

[AmandaVT]

Dawn you are an amazing daughter and I've been praying for you and your father. ❤️

[Katy]

Hugs. You’re not a bad daughter. You’re doing what’s best for you and your family and he wouldn’t want you to see him like this anyway. 

I’d file a complaint with the hospital and medical board about the doctor giving him nothing for pain. The pendulum has swung way too far when they won’t give pain control to the dying. I doubt that is following any guidelines anywhere. 

I’m glad he’s in hospice. I think the longest I’ve ever seen someone live after they stopped eating was 3 and a half weeks. He wasn’t conscious for the last 2 weeks. 

[DawnM]

His extremities are now purple.   He hasn't eaten or had any liquids for 4 days.   The nurse seemed to feel it would be another few days at most.

[Hannah]

Wishing you strength in this difficult time. You have been a great daughter, always doing your best for your Dad and family.

[Grace Hopper]

35 minutes ago, DawnM said:

His extremities are now purple.   He hasn't eaten or had any liquids for 4 days.   The nurse seemed to feel it would be another few days at most.

More hugs. So glad he is in hospice care. 

[Kareni]

Sending sympathetic thoughts for you and your father, @DawnM.

Regards,

Kareni

[Katy]

Yeah, a few days at most seems accurate. 
 

I wish I was closer & could bring you food & watch your kids for you. 

[freesia]

Just now, Katy said:

Yeah, a few days at most seems accurate. 
 

I wish I was closer & could bring you food & watch your kids for you. 

Me, too, Dawn. 

[porque?]

Many hugs to you Dawn

[Innisfree]

Sending lots of hugs. It’s a difficult process to watch, but I’m so glad you were able to find a hospice spot for him.

[Ausmumof3]

On 12/27/2022 at 11:30 PM, DawnM said:

12/27

They have moved him up to the highest level of care.   He has stopped eating.   When he tries to eat he aspirates.   He can't swallow.   

In the hospital he was taking no pain meds.   In hospice he started taking codeine.   Within days, they have upped him to morphine.   They say he is in a tremendous amount of pain and it has gotten so much worse in the last few days.

We went to see him on Christmas Day.   He couldn't understand that it was Christmas.   He kept talking things that did not make sense (feeling around on his bed and when we asked what he was feeling for, he said there was cheese all over his bed.)

The social worker said there will be no need to worry about where he will go in 30 days, she said not to expect the full 30 days.   He has been there 6 days so far.

I just pray God takes him before he has to suffer longer.   It is so hard to watch.

 

My mum had very unpleasant hallucinations on morphine during end of life care. There are alternatives if the morphine is causing issues, I think. She switched to something else that managed the pain without those. I wonder if that’s why he’s saying things like there’s cheese all over the bed?

I’m sorry things are so difficult right now.

[Melissa in Australia]

Hugs

[DawnM]

45 minutes ago, Ausmumof3 said:

My mum had very unpleasant hallucinations on morphine during end of life care. There are alternatives if the morphine is causing issues, I think. She switched to something else that managed the pain without those. I wonder if that’s why he’s saying things like there’s cheese all over the bed?

I’m sorry things are so difficult right now.

He said that before he switched to morphine.   He has been saying weird stuff like that whenever his dementia gets bad, usually when he is sick or in pain.

[Ausmumof3]

8 minutes ago, DawnM said:

He said that before he switched to morphine.   He has been saying weird stuff like that whenever his dementia gets bad, usually when he is sick or in pain.

Oh I see, sorry. I misread. 

[kbutton]

8 hours ago, Katy said:

I’d file a complaint with the hospital and medical board about the doctor giving him nothing for pain.

I would work with family relations to ask that the provider be retrained on pain control--a look at his imaging and knowledge of his dementia should've made it obvious that he needed to be treated and then have a referral to the pain team.

[kbutton]

5 minutes ago, kbutton said:

I would work with family relations to ask that the provider be retrained on pain control--a look at his imaging and knowledge of his dementia should've made it obvious that he needed to be treated and then have a referral to the pain team.

Quoting myself to add...sometimes additional questions will reveal pain for someone who has dementia, communication issues, or unusual body awareness, such as asking the person if they can move xyz limb, etc. Often someone will show signs of pain, say they can't move it, etc. even though they just said they weren't in pain. 

Just something DH talks about when he talks about work...I really hope it won't be necessary in this situation again, but a family member can maybe use strategies like this to advocate if it comes up again.

[BusyMom5]

Sending you hugs snd strength to get through this difficult time.  You have been a wonderful, patient,  loving daughter.  End of life is just sometimes hard.  

[prairiewindmomma]

We have had relatives with dementia who couldn’t articulate pain or answer those questions but consistently saw chickens when in pain. Plucking at the bed sheets (which is normally an end of life sign) also happened. The brain is a fascinating and weird thing. 
 

Heads up, Dawn, if you are at mottling at the extremities and organ shut down phase, the breathing can become quite rough. As the mucus dries up in the mouth and body, there is sometimes a rattling sound (different than agonal breathing but still hard to witness). I would have an adult step into the room and check the situation first before bringing kids or quirky people in, iykwim. It can be anxiety producing to hear. No one warned me the first time so I wanted to make sure you knew since you have a young child with a trauma history.

Hugs, sincere hugs.

[DawnM]

30 minutes ago, prairiewindmomma said:

We have had relatives with dementia who couldn’t articulate pain or answer those questions but consistently saw chickens when in pain. Plucking at the bed sheets (which is normally an end of life sign) also happened. The brain is a fascinating and weird thing. 
 

Heads up, Dawn, if you are at mottling at the extremities and organ shut down phase, the breathing can become quite rough. As the mucus dries up in the mouth and body, there is sometimes a rattling sound (different than agonal breathing but still hard to witness). I would have an adult step into the room and check the situation first before bringing kids or quirky people in, iykwim. It can be anxiety producing to hear. No one warned me the first time so I wanted to make sure you knew since you have a young child with a trauma history.

Hugs, sincere hugs.

Thanks, yes, I have been following a hospice nurse on TikTok where she talks about the death and dying process and the "death rattle."   

He already has the apnea.

I just wish he could have had a heart attack and been done with it.....I hate seeing him like this.

[Shoeless]

I'm so sorry, Dawn. You've done so much to help him. Wishing for peace and comfort for you both ❤️

[mominco]

(((hugs)))Dawn

[Harriet Vane]

Hugs, Dawn. We went through this with both of my dh’s dear parents last year. My prayers are with you.

[Melissa in Australia]

Huge hugs

You are in my thoughts

[TexasProud]

Praying. Yes, the breathing is so hard to watch.  Praying so hard for you and your dad.

[Heatherwith4]

I’m praying for you and your dad.  I’m so sorry you’re both going through this.  

[sheryl]

Sending prayer to you all, Dawn!  I have not read all of the replies.  So very sorry!  

[Tiberia]

Thinking of you and praying for you today

[Katy]

Praying for you too.

[BlsdMama]

Praying for you. You’ve done so much and been thoughtful and caring. I’m praying for the peace that passes all understanding and that this part would pass quickly so this season becomes eclipsed by his life and all the wonderful memories you have. 
~Kelly

[DawnM]

I told him tonight that it was ok to go ahead and go see Jesus.   I told him that we will be ok.   I honestly don't think he heard any of it, but the nurse told me to say it, so I did.

[Mrs Tiggywinkle Again]

20 minutes ago, DawnM said:

I told him tonight that it was ok to go ahead and go see Jesus.   I told him that we will be ok.   I honestly don't think he heard any of it, but the nurse told me to say it, so I did.

Hearing is the last sense to go.  On some level, even if it wasn’t a physical level and only his soul heard you, he heard you. 

[Grace Hopper]

25 minutes ago, DawnM said:

I told him tonight that it was ok to go ahead and go see Jesus.   I told him that we will be ok.   I honestly don't think he heard any of it, but the nurse told me to say it, so I did.

I was going to share this with you earlier but thought the timing wasn’t right. 
 

As I was leaving the room after sitting a long while with my dying mother, a seasoned nurse pulled me aside and said, “You know, she’s hanging on for you. She thinks you’ll be alone if she goes.” She let me know it was ok to say goodbye and then step out for the evening. So I did say goodbye, and went ahead to a dear friend’s wedding that I’d planned to skip. My mother passed that night. 
 

And it was okay that I wasn’t there for the very last labored breath. So please do not feel guilty if you’re not standing at bedside in that last minute. Releasing him was a good thing to do, even though I’m sure it was quite difficult and perhaps may have felt wrong. You’ve been a wonderful daughter. 

Edited December 30, 2022 by Grace Hopper

[Tiberia]

Dawn, it's ok if you're not there for the last breath. And it's ok if you are.

It's out of your hands, and you've released him. He is making the transition from physical to spiritual, and it is a solitary journey (even though I don't think he'll ever be alone).  

I was not in the room when my dad passed; I had been with him for hours on end for over a week, and I was exhausted, just drained. I told my dad the same thing that you did. I got the call from hospice that he was gone at two in the morning. It's ok. You've done a great job, and you're a great daughter. 

2 Corinthians 4:16 NIV

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.

 

[mom31257]

@DawnM,praying for you and for him to have as peaceful a passing as possible! 

[mommyoffive]

@DawnM  I am sending so many hugs to you tonight.  

[1234]

2 hours ago, DawnM said:

I told him tonight that it was ok to go ahead and go see Jesus.   I told him that we will be ok.   I honestly don't think he heard any of it, but the nurse told me to say it, so I did.

I’m so sorry. I remember telling my own dad almost 23 years ago that it was ok to go. It was so difficult. Many good thoughts, prayers, and gentle hugs sent your way from me. I’m praying he passes peacefully.

[LifeLovePassion]

Thinking of you, Dawn. 

[Laura Corin]

I wasn't with my mum when she died. I went home to sleep and she died at 4am. I had kissed her and told her I loved her before I went home. I don't regret it.