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 Caregiver costs 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Caregiver costs
Yeah - I just couldn't stand to hear him screaming "help" and "stop it" so I got the nurse and asked her to give him some morphine. Hopefully they will not move him again without giving it to him prior to touching him.
BTW, the director of the hospice house I visited today said he should never have been put on Fentanyl patch. She says a very thin person with thin skin should not be given Fentanyl patch because it's not properly absorbed and is therefore ineffective. My dad is just skin and bones at this point, and his skin is so thin almost anything causes him to bleed.
Yet another thing I have to bring up with the CNP - not something I look forward to having to do again. I try to avoid those 2 like the plague! Wish me luck with that! 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.


Tue Nov 23, 2010 10:13 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Caregiver costs
Lynn, not wanting to contradict the hospice nurse but there is this info on Medscape:

"Q: Is it true that fentanyl patches infuse more quickly in patients with very little subcutaneous fat?

A: No. The amount of fentanyl absorbed is proportional to the surface area of the patch. The absorption rate does not vary to any clinically significant extent between the chest, abdomen, and thigh.[5] Fentanyl is released from the patch into top layers of the skin (stratum corneum and epidermis), and it accumulates within these layers to form a depot. The drug is released slowly into the systemic circulation via small blood vessels within the dermis. Fat tissue should not impair release, as the drug is released directly from the skin into the blood supply."

The drug is absorbed from the skin layers into the bloodstream so it really shouldn't matter how skinny a person is. If it irritates or tears his skin, that's another matter.

_________________
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 Nov 23, 2010 10:19 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Caregiver costs
Thanks Pat. Just another one of those contradictory/confusing things I need to think about! I'm going to see how my dad is the next day or two, and what kind of comfort care he's getting before deciding whether to move him or not. If he's being kept comfortable where he is, I'm inclined not to move him into a whole new environment with a whole new set of people. Although, yesterday he told me very clearly several times "get me out of here. Why do I have to stay here all the time?" However, I don't think moving to a hospice house was the destination he had in mind! I just told him that he'd been very sick and when he got better and stronger I'd take him for a walk. That seemed to satisfy him. 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.


Wed Nov 24, 2010 9:10 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Moving your dad - Lynn
I think you are making a wise decision. It is very hard to predict when death will occur. Your dad's comment about 'get me out of here' brought back memories. My dad wrote a note after extensive heart surgery --- when he was hooked up so badly, he couldn't talk. The note said, "Get me out of here. Call 911."

The hospital finally agreed and sent him home to die. He lived another 14 years.

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


Wed Nov 24, 2010 9:18 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Caregiver costs
Wow. That's some story! I sure hope his quality of life was good all those years! I wish my dad could come home to die, but I don't know if he'd be able to get the care he's getting now. I suppose I could ask his hospice nurse about the possibilities. 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.


Wed Nov 24, 2010 9:24 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Caregiver costs
Lynn

Your November post was about your father's pain. Did the pain and/or pain meds continue until his death?

Gail


Sat Dec 18, 2010 3:35 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Caregiver costs
The pain seemed to increase over his last few weeks. He died 6 days after my last post on this thread. There was discussion about whether the Fentanyl patch was working or not because of his extreme weight loss (he was down to about 100 lb.). One nurse said it would work, the other thought it wasn't working. The CNP always seemed to win out over the hospice nurse. I think he was on a stronger Fentanyl patch his last few days, and he was being given morphine (drops under tongue) more regularly, but not necessarily every x hours. I requested that they give him the morphine on a regular basis because I did not see any reason for him to be in any pain at all. He always looked more comfortable a few min. after the morphine but it tasted awful. I tried to give him a bite of food or a little drink after the morphine to get the bad taste out of his mouth. 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.


Sat Dec 18, 2010 2:21 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Caregiver costs
Lynn, there has to be a special place in hell for people like the CNP who was so difficult to work with in your dad's case. To fight against the hospice nurse was uncalled for. We watched your heartbreak and frustration and felt so helpless to aid you. And you were helpless, too, against a person who is so driven to have her own way. Take care, Lynn. You are a wonderful daughter/advocate/protector. (LOL Will you adopt me?) Smiles, Nan


Sat Dec 18, 2010 2:51 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Caregiver costs
Thanks Nan. I am documenting my dad's journey the past 3 years. I have 2 goals in doing so:
1. I find it cathartic to write down all this stuff that's been rambling around in my head for a while
2. To use what I learned to help others perhaps avoid some of the pitfalls or at least have a heads-up that certain things could happen. I hate to be blind-sided, myself. I'd rather have an idea of what could happen so I can avoid it or be better prepared to deal with it.
I am also going to present some of my frustrations and possible solutions to those who might be able to make a difference in the life of another family, whether it be the CNP assoc. in the state where my dad lived, people in politics, medicine, whatever. There was some absolutely inexcusable behavior that happened, and no family or patient should have to go through some of the things we did.
Thank you so much for your comments and support. I couldn't have made it without this forum. 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 Dec 18, 2010 2:59 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Caregiver costs
I think in our case the Morphine was given ever 2 hours like clock work, are you thinking they didn't follow protocol with your Dad's written orders?

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Irene Selak


Sat Dec 18, 2010 4:59 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Caregiver costs
The written orders supposedly were "every 2.5 hours AS NEEDED" not, "every 2.5 hours". The CNPs, who were there for a few minutes a week, thought that was a wise thing to do. The hospice nurse wanted his pain managed better.
Does anyone else have the situation where a CNP/primary care person routinely overrules the hospice nurse and dr. who is head of hospice? 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 Dec 18, 2010 6:24 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Caregiver costs
I can understand the facility's CNP over-ruling anyone's orders if those orders come from someone out the facility (ie, hospice). The facility is ultimately responsible for the care given.


PS. You might want to start a new thread for this, Lynn. You raise some important points that merit their own discussion.


Sat Dec 18, 2010 6:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Caregiver costs
This is NOT the facility's CNP - it is an outside health care group, headed and owned by a CNP with a few CNPs working for her. There is an "affiliated" doctor who "reviews" what the CNPs are doing. He never met my dad. I will start a new post about who is in charge. 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.


Sat Dec 18, 2010 6:34 pm
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