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 Hospice 
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Hospice
We've been accepted into hospice! It has been an intense two days. Once in, we have had a flurry of interviews and meetings. Good thing I took two days off from work. I feel supported, yet exhausted. So is Mom. She is dealing with persistent pain from a series of falls that led to two compression fractures and an irritated arthritic hip. The hospice nurse wants to get her on a pain medication routine. Tylenol isn't cutting it. Ibuprofen causes nausea because she isn't eating or drinking much. The nurse wants to get her on 2.5 mg of methadone every 12 hours. I've looked it up and it isn't addressed by the Boeve Continuum or other LBD resource I've checked. Does anyone have experience with this? Is it anticholinergic? It is a low dose, but I'm hesitant with all new drugs. I should mention that she is 88 years old and has been diagnosed with atrial fibrillation and sick sinus syndrome. I know this could be a problem, but how much? Thanks for any info. Annie

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Annie, daughter of brave Marie, dx 2007 and in ALF


Fri Sep 16, 2011 8:11 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Hospice
Annie, I don't know the drug answer (and I'll bet someone will), but I just want to congratulate you on passing this hurdle and getting some support and help. Are you wearing something bright and festive today?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Sep 16, 2011 8:33 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hospice
It is not anticholinergic. It is synthetic [and legal] heroin, essentially, and is used for heroin addiction and pain control in fibromyalgia and other chronic pain. It's probably as safe as morphine which is used routinely for pain in late stage LBD.

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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.


Fri Sep 16, 2011 9:12 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hospice
Right, methadone isn't anticholinergic. As a narcotic, anyone can react well or poorly to it. Monitor closely! The biggest side effect is probably the chance of constipation, which can be deadly if you are already constipated anyway. This can be addressed with every-third-day suppositories (laxatives).


Fri Sep 16, 2011 10:42 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: Hospice
Annie - So glad your mom is now able to receive hospice services. I remember in the past you've said your mom was very sensitive to most meds, so I hope you find something in a dose that will work well for her. Don't have experience with methadone, but my dad did well on morphine. Is there a reason they aren't going that route? Seems like several others on here have/had LOs on morphine. Lynn

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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.


Sat Sep 17, 2011 4:19 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Hospice
Morphine vs. methodone: What I've been told is that the half-life of methodone is longer so 2 doses a day at 12 hours will give relief from pain. Morphine is shorter, so they would have to titrate it for time, possibly every four hours, and there might be some time (for instance at night) when there might be pain. As far as I can tell, the pain is mostly from a severely arthritic hip, although it could also be from one of her two compressed fractures in her spine.

Thanks for your responses. It is so helpful to be able to tap into other's experiences and knowledge of LBD and medications. Annie

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Annie, daughter of brave Marie, dx 2007 and in ALF


Sun Sep 18, 2011 12:52 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hospice
Yes, morphine (called Roxanol in the liquid form) is wonderful for breakthrough pain. Roxanol is a convenient form of administration.


Sun Sep 18, 2011 12:28 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Hospice
You are all so lucky that your LOs are getting proper pain relief. I am battling constantly with Dad's doctor and nurses to give him proper pain relief. All they are giving him is paracetamol (similar to tylenol - I'm not sure) but definitely not strong enough for the pain Dad is in. Their argument is - ' most pain relief could stop him breathing'!!!!!!!!!!!!!!! :roll: The man is 85, bedbound , in a lot of pain, and they are afraid to keep him pain-free in case he would die! :evil: I am so mad - I have begged and pleaded, and told then I would sign anything and take full responsibility if anything happens, but I am beating my head off a brick wall. I have started to sneak in stronger pain meds and give them to him because I can't bear to watch him in pain. They are not even very strong - some coedeine in them, but at least they are better than paracetamol.
Last night my sister called me and said when she called to see him, he was running a fever and noone had seen him. When she said it to the nurse, the nurses reply was that he had eaten a good supper!!!! GRRRRRR Dad ate his dinner the night he was annointed. I think my Dad will pass over with food in his mouth because his appetite is always good, bar one bad stretch, and his appetite is no marker to his health. He had a temp of 102.2 when the nurse checked, and my sister said it was very obvious that he was unwell. I think the honeymoon period is over in the ursing home and the cracks are beginning to show.
thanks for listening,
Ger

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


Mon Sep 19, 2011 3:09 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hospice
Ger, that is so sad! Pain control has become--thank God!--an important feature of medical intervention in the US now. What could be worse than seeing your LO suffer and be unable to help? :cry: I shall pray for him and for you, too. God bless you.

_________________
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 Sep 19, 2011 10:02 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: Hospice
Ger - I had to ask multiple times that my dad be given morphine before every depends change, before he was turned or touched in any way since he had pain everywhere and it was getting worse. They told me the same thing - he might OD on morphine. He was 89, had been bed bound for months, was in stage 3 kidney disease, was in constant pain, was almost totally paralyzed, and they were worrying about too much morphine! Give me a break. I told them I'd take full responsibility too and they started giving it to him pretty regularly, thank goodness. I couldn't stand to see him in pain and there was no sense in his being in any pain. Did they think he might become an addict!? Lynn

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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 Sep 19, 2011 10:59 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 188
Location: Portland, Or
Post Re: Hospice
Oh Ger, I wish there was something I could do to help you. Have you asked his doctor to prescribe something stronger that he can take ALL the time and not just when he gets in a lot of pain. I'm not a nurse and I know there are nurses and people with more medical knowledge than I have on these forums, but it's my understanding that it's better to give pain meds to someone in as much pain as your father "prophylactically" (sp?), in others words like every four/six hours constantly so he doesn't get into a great deal of pain. That's
what were doing with my mom when she 1st came home from the hospital last week, now that her wound is almost healed we've cut back to an "as needed" dose.
I don't blame you for sneaking in a stronger medication, I would do the same thing in that situation! Sending you lots of hugs, and I'll keep you and your father in my prayers.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Sep 19, 2011 1:43 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Hospice
thaks guys, just being able to vent and to have someone agree with me and understands helps a little. Ellen, as recently as today I almost had a shouting match with his doctor, saying I just can't understand his logic. Why let the man suffer - I think the whole medical profession is now afraid of being sued, and so people like my poor dad have to suffer for it. I again emphasised that I would sign anything taking full resposibility, but his answer today was that he is on a lot of medication, and that he didn't want to give him any more. :evil: Its easy for him when he doesn't have to look at Dad in pain every day. He had been on oxycontin - a slow release low dose morphine every 12 hours, but they caused awful constipation, so now the doctor is very reluctant to prescribe aything else. He is on another downturn at the moment - they are coming much more frequently now. I will continue to sneak in pain relief to keep Dad comfortable - it seems to be the only answer at the moment,
thanks again,
Ger x

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


Mon Sep 19, 2011 2:02 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 188
Location: Portland, Or
Post Re: Hospice
I don't know if this will help or not but because narcotics are constipating we give mom 1 stool softener for every hydrocodone and that keeps her from getting constipated without loosening her stools too much. Maybe they could try that with your dad, it's worth suggesting.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Sep 19, 2011 9:22 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Hospice Becomes a Star
So, here we go...two months ago Mom qualified for hospice. Since then it has been helpful, but not crucial. The person who gives showers is wonderful and the hospice nurse has been a great communicator with my sister. BUT NOW, hospice is really coming through. Mom fell yesterday evening and most likely broke her hip. Bad fall. On a Friday evening, I was able to call a hospice nurse who came, evaluated her while she was on the floor, helped to stabilizer her in bed, and started morphine. This morning we have had the services of a hospice nurse all morning. How wonderful! No trip to the hospital, adequate pain medications, support for my decision to not try to "cure" this broken hip... and someone who can answer all my sister's questions. Both of my sisters.

Hospice says that the first 24 hours often tells how a patient will do. My Mom has declined. She has a drip for morphine as the pain was intense. She is not lucid. We are still trying to give her exelon but I'm not sure we can get it in her. I have stood firm in my "no hospital" decision and the LPN's at the assisted living facility are handling the day-to-day nursing.

This has happened so fast! I'm really glad I had hospice in place. AnnieN

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Annie, daughter of brave Marie, dx 2007 and in ALF


Sat Nov 19, 2011 4:08 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hospice
Glad to hear Hospice is coming through for your mother and that she is being kept comfortable. If she really would benefit from Exelon you might ask to change over to the patch unless her skin can't tolerate it.

_________________
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.


Sat Nov 19, 2011 4:33 pm
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