View unanswered posts | View active topics It is currently Thu Dec 18, 2014 7:48 pm



Reply to topic  [ 179 posts ]  Go to page 1, 2, 3, 4, 5 ... 12  Next
 Hospice 
Author Message

Joined: Sun Jan 20, 2008 5:43 pm
Posts: 6
Post Hospice
My dad has LBD and has suffered a significant decline over the past 2 months. Yesterday, his doctor suggested that my mom contact hospice. The doctor said that if my dad's decline continues he probably only has 3 to 6 months left. We are all very sad but I really hoped hospice might be of help to my family.
My mom, however, spoke to the woman who helps care for my dad. This woman said that hospice might take away Dad's medications. This understandably upset my mom as the medications are so critical. I told my mom this doesn't make sense. Dad's meds aren't curative. Why would they take them away? He would suffer without them and become very agitated.
When my mom spoke to hospice she asked about the meds and the representative got nervous and said maybe we aren't ready for hospice. We are ready for hospice but we aren't going to deprive Dad of medication that makes him more comfortable. I'm so tired and confused. Every time I think something might help I feel let down. I suspect this is a misunderstanding but find it difficult to decipher as I am hearing everything second hand.
Does anyone have any experience with this and whether or not being in hospice affects an LBD patient's access to medication? Thank you! You are all such a source of comfort. Sometimes I feel like my family is so alone.


Thu Jun 25, 2009 11:35 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Lucille,

I agree with your suspicion that there is a misunderstanding.

This is the key reason I recommend that the NEUROLOGIST (or psychiatrist) be the prescribing MD for hospice, not the primary care physician. If the neurologist is the prescribing MD for hospice, then whatever he prescribes is generally deemed to be acceptable because that MD knows LBD the best.

Generally at the time of hospice, there is an evaluation of medication. But this can be done with the neurologist, and you simply inform hospice that the meds list has already been evaluated.

Hang tough! Perhaps try a different hospice organization.

Robin


Fri Jun 26, 2009 12:06 am
Profile

Joined: Sun Jan 20, 2008 5:43 pm
Posts: 6
Post 
Robin,

Thank you for the good advice. Dad's neurologist is the referring doctor so I will pass your suggestion on to my mom. I know that hospice is a wonderful resource as they helped us at the end of my mother in law's life. I really hope we can make it work as I know they could help us honor my dad's end of life wishes.

Lucille


Fri Jun 26, 2009 12:52 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Lucille,
Sorry about your Dad's decline, but Robin's advice is good and Hospice doesn't take meds away, my husband was a hospice patient for 8 months and his meds were not ended until the last week, with all the swallowing issues they did everything they could to find way for him to have his meds and when the end came it was my decision to stop them. I hope you get the help you are hoping for and as Robin mentioned if this hospice doesn't work out try another in the area.

_________________
Irene Selak


Sat Jun 27, 2009 12:12 pm
Profile WWW

Joined: Sun Jan 20, 2008 5:43 pm
Posts: 6
Post 
Irene & Robin,
Thanks the encouragement. I just wanted to tell you guys that Hospice visited yesterday and reassured my mom that the meds schedule would remain the same.
They also had my mom sign a DNR which is a big relief as my dad was very clear about his wishes. This is also a big relief as we can avoid painful and unecessary trips to the ER. Unfortunately, we have had a few of those.
The nurse did tell my mom that some hospice organizations do change medications. I don't know what that means but I agree with Robin that if that were the case we would have needed to find another hospice.
Thanks again,
Lucille


Sat Jun 27, 2009 12:36 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Lucille,
That's great news!

_________________
Irene Selak


Sat Jun 27, 2009 1:10 pm
Profile WWW

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Hospice
Just got a call from Hospice where my dad is. They have "automatically" put him into their program now, based on the fact that he needs 100% care and because his weight has dropped more since their evals in April. I don't know how he is going to accept being in Hospice - it's hard to know with his varying cognitive state, but he has been saying for the past few weeks that he wishes he weren't alive in the horrible condition he's in. He's ready to go...... I just want him to be kept as comfortable as possible in his remaining time, whatever that is. They asked me to meet with them on Thurs., but I can't get back to MD again this week so hopefully I my sister will be there. If not, I'll have to find a friend to go. 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.


Tue Jul 20, 2010 3:16 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hospice
I'm glad your dad was accepted into hospice. Not everyone has to be told they are on hospice. You might request that they call themselves "extra healthcare" or something like that. Or, he may not even notice that there are new faces around giving him assistance.

Sometimes people who are placed on hospice due to significant weight loss are able to "graduate" from hospice once they re-gain weight. If your father is worried about the H word, perhaps you can give him that explanation.


Tue Jul 20, 2010 5:58 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hospice
Lynn, I'm glad to hear your dad was finally admitted to Hospice. I can't imagine his not being 'in on it' but then I never had any hospice patients with dementia. Usually, the patient was the one who initiated it with the family being more reluctant, as in, "Dad, you're not giving up, are you?" Boy, if people would only think before they say things like that!

Anyway, Lynn, you've been the best daughter a dad could have! It's sad that he can't show his appreciation but sometimes Lewy gets in the way. Get some rest now that you're home!

_________________
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 Jul 20, 2010 7:54 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Hospice
I'm glad he is finally receiving hospice services, but I cannot understand why the CNP went to his ALF and met with him without a family member there. I don't know how he understood her (with his hearing issues and cognitive issues) or how she understood him (with his slurred speech, etc.) and I feel very badly that she talked with him about hospice without our knowing she would do that. She also told him he could never go home again. Where is the sensitivity towards patients, especially ones who can no longer think clearly?
The medical care for the most part where he is drives me crazy. They do all sorts of things without involving the family, with a patient who is in final stages of dementia. It makes no sense to me and no matter what I say to them in person or in written lettters, it makes no difference. They do not respond to email or phone messages either.
He has absolutely no quality of life, is absolutely miserable, and is ready to die. I just hope he can be released from his torturous world soon. It is just horrible to see him in the shape he's in, knowing there is no hope for things to get better. He has lived a full and vibrant life until about 18 mo. ago. I would not wish his life now on anyone.
Thanks for your messages. 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.


Tue Jul 20, 2010 10:55 pm
Profile

Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Hospice
Lynn, over the past month I have seen two men at my LO's ALF go from being mobile people capable of figuring out how to leave the building through fire exits, to bed-bound patients and death within one week. I don't know the details of their health conditions but my impression is that they just gave up on life when they found that they could not successfully leave. They did not want to live. They both had an easy death, just sleeping away until the end at the ALF with loved ones by their side reading to them.

I feel that the will to live has a lot to do with when a person goes. I honestly think that my LO has not lost the will to live yet; although she says that she wants to die. When she does, for some reason I think I will be ready for it. I hope that both of our parents pass easily and quickly when the time comes.

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


Wed Jul 21, 2010 9:34 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Hospice
I do too, Annie. My dad's condition is so awful that when he dies I think I'll feel like he was released from being imprisoned for something he didn't do. The only thing he talks about regarding the future is that he wants to see my youngest son graduate from college. Then he says he'll be ready to die (at least this was a conversation a few months ago). Lately he talks about how he should die because he's so infirm and incapable of even holding a drink, his last ADL that he could perform. I wish he had some quality of life left, but he doesn't. Some of his friends have suggested that I tell him that my son just graduated. I don't know that I could go that far in lying to him. 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 Jul 21, 2010 11:52 am
Profile

Joined: Wed Jun 09, 2010 4:53 pm
Posts: 42
Location: Davis, CA
Post Re: Hospice
Dear Lucille and Lynn, So sorry that your loved ones need hospice, but I found them to be very wonderful and helpful. When we brought dad home, the nursing home argued with us about the hospice organization we had selected, which was a non-profit. The nursing home wanted their choice in hospice to go with him. It was a for-profit and we are sure the nursing home would have been getting a kick-back. They told us lies about the incompetence of our selected hospice organization. We had absolutely no complaints except for the instruction to move him every hour because of a bedsore, but we worked that out so that he didn't suffer the agony and anxiety of an hourly full-body move.

My thoughts are with both of you as your parents move on.


Wed Jul 21, 2010 2:59 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Hospice
Well, I have had to be incredibly strong and in control the last year, and 5 min. before the phone meeting with the hospice nurse who is doing my dad's assessment this morning, I just about lost it. I feel like I'm teetering on the edge and one tiny thing could just set me into a tailspin this morning. I hope that my sister is able to effectively go through the rest of the interviews today. They are sending a social worker in for an interview in a few min. and I will be on another phone meeting. The reality of my dad's end of life is like a big smack in the face this morning. 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.


Thu Jul 22, 2010 11:07 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hospice
Amanda, your story about the nursing home doesn't surprise me in the least. They attack when we are vulnerable and it's hard to remain firm. In late 2008 my husband was transferred to a SNF when discharged from the hospital for a month of rehab. I was told he would have a private room. When we arrived at his room, there was another, very loud and confused man in the room, feces smeared all over the toilet, nothing ready for my husband's admission. I told them I was taking him home [we were in an RV in AZ at the time] and they actually implemented a 'show of force', where a whole group of 'managers' came and warned us that if I refused to admit my husband he would be considered 'AMA' [against medical advice] and would be 'refused medical care' in that county for good. It was evening, my husband was very weak, I was very exhausted and I couldn't believe what was happening! I told them I would take that risk and we headed for the door. They told us to 'wait a few minutes' and they found him a [clean] room by himself. His stay there was a nightmare and he ended up back in the hospital with renal failure [reversible, thankfully!] because they left his catheter out and he wasn't peeing.

Sorry for the rant but these for-profit facilities are ruthless and need investigating, in my opinion.

_________________
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.


Thu Jul 22, 2010 11:49 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 179 posts ]  Go to page 1, 2, 3, 4, 5 ... 12  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr