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 Hospice 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Hospice
mockturtle wrote:
Leone, did the nurses show you how to turn Dale using a draw sheet and how to prop him on his side with pillows?

Yes, they did.... sort of..... The problem is that his legs are permanently bent into a fetal position. He won't allow them to be straightened. He refuses to lie on his back. That means either one side or the other.

He is scared and the alarm that registers in his face when I attempt to move him is heart breaking.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Mar 14, 2011 4:24 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Hospice
Leone, you are doing every thing humanly possible for Dale. You are not a failure. Dale is so proud of you keep that thought in mind. Hugs, Bernie


Mon Mar 14, 2011 4:25 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Hospice
I appreciate all of your encouragement so very much. Thanks from my very tender heart.....

When the neighbor saw Dale, he said, "Well, you did it! I didn't think you could. It's not long now, is it?"

I hope not.

UPDATE: My neighbors just called and said they would be happy to come every day and help to move Dale. I'm so grateful!

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Last edited by Leone on Mon Mar 14, 2011 7:40 pm, edited 1 time in total.



Mon Mar 14, 2011 4:29 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Hospice
Leone, I pray that both of you find lasting peace very soon. No more suffering, and at long last no more pain. My thoughts are with you and Dale during this most difficult time. Hugs, Bernie


Mon Mar 14, 2011 5:32 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Hospice
For those who are interested, we have started using Dexamethasone 4 mg in a capsule placed in the rectum. Hopefully, that will work faster than by mouth. The Methadone HCL has been increased to 5 mg which I will continue to crush into applesauce.

Hopefully, the Dexamethasone will work on his bent legs and allow him to relax them.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Mar 14, 2011 5:58 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hospice
Dexamethasone is a corticosteroid, not a pain killer. But if his pain is caused by swelling or inflammation it will help.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Mar 14, 2011 6:11 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Hospice
Right, Pat..... We are continuing the Methadone and Morphine in increased doses.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Mar 14, 2011 6:14 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Hospice
Pat - sorry, I haven't been on the forum all day. Yes, like Dale, my dad had pain all over, not just the pressure sore. If I tried to hold his hand it was painful, when they tried to turn him which had to be done every few hours, that hurt him. They stopped putting him in the whirlpool bath the last couple of weeks because moving and undressing/dressing him was extremely painful for him. When I tried covering him up, or uncovering him because his temp. fluctuated a lot that last week, if I had to move his arms a little to adjust the covers you could see the pain in his face or he'd yell out in pain. It was just horrible. I couldn't figure out why they just didn't have him on a regular morphine schedule. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Mar 14, 2011 9:51 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Hospice
Thanks for telling me that, Lynn. Nothing seems to be able to stop Dale's pain. It is just as you said. I even tried to hold his hand and he winched.

I don't think the morphine helps... other than to keep him sedated. He is breathing very irregularly tonight. I hope he doesn't need to continue much longer.

His hands are now both swollen. I hate to see him like this. It is absolutely torture. It is quite obvious that the body is shutting down.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Mar 14, 2011 9:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Hospice
Leone - I am with you in spirit, and wish I could be there to hold YOUR hand. It does sound like it won't be much longer, from my limited experience. I don't know why they have pain all over, but controlling it is how we can help them best if they experience it. And just being there. Hang in there Leone, you have lots of support but don't hesitate to ask for whatever you need to help you get through this. You will be on the other side of it soon. Gigantic hug, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Mar 14, 2011 10:42 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Hospice
Leone, read this and thought of you

When it comes to death and dying
There's a special gift you share
One that Angels all admire
One that goes beyond just care

It's a gift of deep commitment
One that eases pain and fear
And alleviates the sorrow
When the hour of death is near

Yet this gift is more than comfort
More than nursing at its best
For it cradles your dear love
Right up till their last request

In this gift you give compassion
Wrapped in dignity and love
And in honor of your calling
There's a tribute found above

a tribute by E.V. Stankowski
God Bless xxx

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Mar 15, 2011 5:50 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Hospice
That's beautiful, Ger. Thank you.

Dale is still breathing irregularly. I was almost reluctant to go to bed last night ... but was too tired to stay up with him. This morning, he is still breathing but there is no other response. I gave him morphine. His hands are still strangely swollen.

Housekeepers come today... and our pastor.... and the neighbors to help turn him. I'll have a lot of help.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Mar 15, 2011 6:24 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Hospice
Hi Leone,
I'm sorry you and Dale are going through this. I hope today is a bit easier for you and that Dale gets some relief from his pain. My thoughts are with you, Sher

_________________
Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Tue Mar 15, 2011 9:12 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hospice
Ger, that's a beautiful poem and very fitting.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Mar 15, 2011 9:27 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hospice
Leone,
We "talked" about brain donation a few months back. I encourage you to make the arrangements for that now, if it's something you are going to do.
Robin


Tue Mar 15, 2011 10:23 am
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