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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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 Re: Hospice Sorry. Dale did not want that.
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Tue Mar 15, 2011 1:01 pm |
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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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Re: Hospice - the bad and the ugly Well, no more pills crushed in applesauce as of today. It just stayed on his tongue. I tried to give him a little juice and he gagged. The swallowing ability is gone. Now, the pills are all to be administered in capsules in the rectum. Water is to be applied with swabs on his lips. Morphine is still administered with a dropper under the tongue.
However, the hospice aide who bathes him got a stream of curse words that was quite expressive. He does not like to be touched and he yells in pain. At one point, he clearly said to me, "If you really love me, go get the car!"
This isn't a dying scene like we see in the movies! This is ugly.
The nurse told me this morning that this stage is typically 7 to 14 days. I know my mother was in this condition for 12 days.
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
Last edited by Leone on Tue Mar 15, 2011 7:24 pm, edited 1 time in total.
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| Tue Mar 15, 2011 3:16 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3006
Location: WA
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Re: Hospice Prayers for you and Dale, Leone, and strong hugs! 
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Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Tue Mar 15, 2011 3:31 pm |
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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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Re: Hospice - the messy too Thanks, Pat. I hope revealing the 'bad and ugly' is helpful to some. There is nothing pretty about this job. In fact, cleaning up the messy diaper of a man who is still 150 pounds and can't move at all is a huge challenge. As you probably know, his pain is only part of the problem. He can no longer grab the railing or help in any way.
I sometimes feel like I did when I was a new mother. You get on the job training in a hurry.
I'm tremendously thankful for the makers of hospital beds! Hoisting the bottom section up is the only way I can manage.
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Tue Mar 15, 2011 3:49 pm |
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irene selak
Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1940
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Re: Hospice Leone,
I wish you and Dale comfort in the days to come and no need for being sorry, its a decision that was made !
I am thinking about you!
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Some forum members may be intense in sharing what they have found to be useful/recommend certain resources.While meaning well, some comments may seem rather strong. Please contact me with any concerns.
Irene Selak
LBDA Forum Moderator
http://www.lbda.org
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| Tue Mar 15, 2011 3:54 pm |
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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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Re: Hospice Thanks, Irene. I'm NOT having second thoughts about keeping Dale at home. I am still glad I made that choice. I also don't want to sound like I'm complaining. I'm just 'telling it like it is.'
My purpose in writing is to share honestly what the experience involves and hopefully help someone who has a need to know. As I wrote before, this is not the experience of dying that you see in the movies. This is real.
It's sort of like the high school classes that teach young girls what having a baby is REALLY like. They might think twice about making that choice too early. They may still make the choice later - when they are ready.
I want to add that the experience of withholding food and drink is so very hard. There is a part of me that wants to force him to eat something. However, I know that he did not want a feeding tube. The emotional issue, however, is huge.
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Tue Mar 15, 2011 4:15 pm |
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nandel8
Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
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Re: Hospice Oh, Leone, I want you to know that this truly IS helpful. I did not know about the issue of pain in. I somehow thought that once they started giving pain medication the pain pretty much cleared up. That's the way it was for my friend Nella who died 15 months ago. They started her on morphinea nd she just drifted away. What you and Dale are going through sounds horrid. You have my sympathy, for what it's worth, and my prayers which are more valuable. Take care, my friend. Nan
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| Tue Mar 15, 2011 4:59 pm |
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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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Re: Hospice Thanks, Nan. I also thought that once morphine was started, there was no problem. There are several reasons for pain, the hospice people tell me. Some is just manufactured in the brain and what is imagined there is sometimes beyond control. Another reason may be in the bones and we are trying to address that.
He is still refusing to unbend his legs. I have him lying on his back now... with his legs in the air because he has pressure sores on both hips. I really thought having him on an air mattress with a Tempur-pedic pad would be the answer. I was wrong.
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Tue Mar 15, 2011 5:55 pm |
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Ger
Joined: Mon Feb 21, 2011 9:55 pm
Posts: 354
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Re: Hospice Dear Leone,
ANGELS
When Angels sense you need them
And Angels always do
They come, unseen, from everywhere
To help and comfort you.
They hover close beside you
Till all your cares are gone
Till they can see youâre ready
Once again to carry on.
Then some of them may fly away
And take their gentle touch
To other hearts that need
The love of Angels very much.
But one, at least, stays with you
As your constant friend and guide,
For GUARDIAN ANGELS never leave,
Theyâre always at your side..
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cared for Dad who passed away on January 28th 2013 R.I.P.
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| Tue Mar 15, 2011 6:38 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3006
Location: WA
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Re: Hospice Leone, I think if Derek becomes bedbound and at the point of being admitted to Hospice, I'm going to bring him home. It's the transferring I'm not able to do but I think I could turn him and take care of him in bed OK. I can't imagine the SNF attending to him adequately in that situation. And I'd be getting some help, too, with bathing, etc.
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Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Tue Mar 15, 2011 6:39 pm |
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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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Re: Hospice This article about feeding tube use with dementia patients in nursing homes was interesting to me. 'For profit' places have an interest in keeping the patient alive as long as possible.
http://www.scnursinghomelaw.com/2010/03 ... ing-tubes/
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Tue Mar 15, 2011 7:01 pm |
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JeanneG
Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1037
Location: Minnesota
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Re: Hospice Your postings are providing a valuable service, Leone. I hope that expressing and explaining this is helping you, too.
I want to keep Coy at home, as you have done. I know that may not be within my control, as it wasn't for Pat. I hope in either case that he can die at home when the time comes. I really admire what you are doing.
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Jeanne, 66 caring for husband Coy, 85. RBD for 30+ years; LDB since 2003, Coy still at home, in early stage
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| Tue Mar 15, 2011 7:06 pm |
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sharone
Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
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Re: Hospice Leone,
You are doing a wonderful thing for you husband. I know how hard it at this stage. I too had my mother here. I had a very difficult time with the turning....
My mother also had extreme pain. She would yell at the slightest. You could not even slightly touch her with a finger tip. It was awful. The hospice nurse and doctor were able to get control of the pain. It wasnt easy but very well worth it. She was able to receive some comfort and complete her journey in peace.
Peace be with you and your husband.
Sharon E.
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| Tue Mar 15, 2011 7:07 pm |
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Leone
Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
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Re: Hospice Thanks again, Jeanne and Sharon. It seems to me that dying at home is the best - if it is practical. I love being able to play Dale's favorite CDs for him and check on him whenever I want. I did enjoy the feeding times... up to now. I will miss that!
I think of the special care I'm giving him with his pills... putting them into capsules for placement into his rectum... I can't help but wonder if anyone would go to that trouble in a nursing home.
I'm also a little surprised that so many are writing about extreme pain at the end. I find that many times I can't hold Dale's hand. The pain seems to come and go.
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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Tue Mar 15, 2011 7:22 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3006
Location: WA
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Re: Hospice Document downloaded and saved!!! I always rather suspected this sort of thing but for JAMA to come forth with it is impressive! Thanks for the link. We both have 'no feeding tube' in our advanced directive documents. I would hope that would make a difference!
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Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Tue Mar 15, 2011 7:25 pm |
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