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 Are we doing the right thing?? 
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Joined: Sat Sep 06, 2008 3:16 pm
Posts: 11
Post Are we doing the right thing??
Hi, I have not posted in some time but read often and am thankful for your stories. It is of great comfort to know that my family is not riding this roller coaster ride alone.
A brief history.... My mom was diagnosed with LBD about 5 years ago (but had it for several years prior). Her and my father moved into a AL facility about 2 1/2 yrs ago. She only lasted in the room with my father for 8 months before she was moved down to the SNF unit. She has not walked in over a year and a half, she is 100% incontinent, she moans and cries often. She is able to eat (requires help maybe 50% of the time), knows who her family is, can initiate conversation but doesn't have much to say. At the end of the summer at her care conference they recommended hospice care for her, stating that she would have a better quality of life and be more comfortable. We were a bit shocked but met as a family (dad and his 4 children) with the hospice and asked lots of questions and were informed about many aspects of hospice. We declined at the time saying we really didn't think she was there yet. To add to the matter, my father is a devout Catholic and is of the school of thought you do what needs to be done to stay alive. That doesn't really go along with the hospice philosophy. My sister and I are now battling with whether we are doing the right thing. The nurse has stated she thinks my mom is suffering. She is sad so much. She can't express why but is genuinely happy at times yet is still moaning and crying. We want what is best for my mother and still want to honor my dad's wishes and are at a loss. My sister and I really thought we would know when the end was near but we really have no idea. Every time there is a change we think it's another step closer to the end but then she may rally back a bit. My dad is a true saint... he spends all his waking hours with her and only leaves her to sleep and shower in his room (Yes, they are paying for 2 seperate rooms... but that is for another topic!!) We have been through so much and I already feel like I've been mourning my mom's loss for years now. If we agree to hospice are we giving up? Is that the right option? How much longer can she continue to live like this?
I apologize for the long post. It's hard to sum up all these issues here but I was hoping someone might have some experience they would be willing to share. We are appreciative of any advice from anyone. Thank you for listening!!!!
Cmt


Mon Sep 24, 2012 10:07 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Are we doing the right thing??
What a tough call! My husband is perhaps further progressed than your mother but he doesn't cry or moan and I cannot say he has no quality of life. This I do believe: Whichever decision you make, your mother will die when it's God will for her to die [this is my personal belief--please don't anyone take offense who believe otherwise!]. And whatever decision you make for her, you do in her best interest and after much prayer and thought so there is no wrong decision here! And please know that we are here to support you regardless of what decision you make. 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 24, 2012 10:19 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Are we doing the right thing??
I went through this with my mother. She didn't have LBD but had been by ambulance to the hospital so many times in a short period for CHF. She had Parkinson's, but not crippling. She'd been sick and unhappy for several years. I realized that nothing they were doing for her would "cure" her, nor did any of it make her feel better. We discussed it together and agreed the time was right for hospice. You can remove yourself or your loved one from hospice at any time. It doesn't have to be permanent and it's not a death sentence. It's designed to "comfort" the patient. If removing a medication results in distress to the patient, it is continued. I understand the "Catholic" perspective but also stress that "God" will prevail, and guide you to make the decision that is right for your mom. I can't express enough how loving, compassionate, supportive, and spiritual the hospice staff were to my mom, me, and my family. They allowed her to leave this world in comfort and with dignity knowing that she was right with God and ready for her next journey. This is a very personal decision that worked for us. I know it's different for everyone and is pretty much driven by one's belief system. I pray that you will find comfort in each other and know that things will happen as they are meant to be. Your dad displays great love and courage to stand by her and support her. May God bless each of you and give you strength.
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Tue Sep 25, 2012 3:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Are we doing the right thing??
Hi CMT - sorry for the situation your family is going through. I have a little experience with hospice, and what I experienced is that hospice has pretty stringent criteria that a person must meet before they are eligible for hospice services. So, if hospice thinks a person is eligible, they are usually in their last 6 months. Hospice can provide you with a pamphlet which describes stages and behaviors a year, a few months, weeks, and days before death so you can make an educated observation about where your LO is likely on the continuum. Being admitted to hospice is not a death sentence - they provide care and support to families at end of life. They just make the process more comfortable and supportive for all involved, and if the person is not at end of life, some hospice orgs. will cease care and then pick up back up again later.
We had a good hospice experience and I only wish that my dad had been approved for hospice care sooner. I think his quality of life would have benefitted as he really liked having the hospice caregivers visit him.
If a LO is at end of life and is being administered life-prolonging treatment, it may be a good idea to ask "who is this being done for? Will it increase the LOs suffering? Who is really benefitting from the treatment?" Did your mom have an AD and/or talk with family members or friends about her wishes under such circumstances? What do you think SHE would want if she were capable of talking about this?
I wish you and your family peace, and come back here often for support when you need it. 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 Sep 25, 2012 9:50 pm
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Joined: Sat Sep 06, 2008 3:16 pm
Posts: 11
Post Re: Are we doing the right thing??
Thank you all for your words and advice. It is helpful to hear your experiences.
We did not have a hospice evaluation but I assumed she would qualify since the SNF recommended it. As far as them saying that she wasn't necessarily in her last 6 months of life I have wondered if they were only trying to soften the blow for us. Everything I read and hear gives that 6 month window.
Lynn, I thought about your question regarding who would benefit if my mom's life was prolonged and I know that answer would be my dad. He thinks that is the right thing to do (for her) and he is doing what she wants. My dad has said she stated (not sure when) that she would want to "not pull the plug" (can't remember the exact words). When they moved into their AL they needed some kind of Living Will. My sister found a catholic version and it states that they both want to stay alive.
In some ways I do know that God has a plan. I just really want to know what that plan is!! It would help us make decisions. Earlier in the summer we were having major discussions about possibly moving them from their facility (for financial reasons). As we grappled with this I was praying that I would get some kind of sign about what the right decision was. Well shortly after that was when hospice was recommended. Was that my sign? There would be no need to worry about running out of money if she was not alive and therefore they don't need to move.
My dad told me yesterday that he thinks she is dying. It is heartwrenching. I agreed with him and asked what he thought we should do. We had another hospice conversation but made no decisions. We'll go one day at a time is what I told my dad.
Thank you again for all your thoughts. I will keep you posted.


Wed Sep 26, 2012 9:54 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Are we doing the right thing??
There is no harm in having the Hospice evaluation. I think they are being a little stricter in LBD cases now because of the 'up and down' nature of this disease and the fact that Medicare Hospice has had some cutbacks. Regarding God's plan, just assume that a decision you make after prayerful consideration and consultation with medical personnel will be according to His plan. Then just leave it in His loving hands. God bless!

_________________
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.


Wed Sep 26, 2012 11:29 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Are we doing the right thing??
My dad's first 2 hospice evals were done because the ALF nurses thought he was in his last 6 mo. He "failed" the hospice criteria the first 2 times because their criteria are so strick and seem to leave little room for interpretation. Turns out he really WAS in his last 6 months and he died within a few months of being on hospice services. Had he not "failed" the criteria the first 2 times I think his quality of life would have been better because he liked having lots of people in his room, and with all the problems he had there were several different hospice people who came in for different reasons. Unfortunately he did not have hospice the whole time he should have. I'd seriously recommend getting their pamphlet yourself so you might be able to have some clue as to where YOU think your mom is on the continuum.
Yes, there are many people who do not ascribe to "accepting natural death" and want medical intervention, no matter what results from that. If that's what your mom said she wanted when she was well, then that has to be helpful in guiding you now. I'd also want to take a look at her AD if I were having any input on the situation at this point. Most of us are pretty clueless about how diseases and conditions will affect us in later stages, and it is possible that your mom might think differently if she knew then what was going on now and how her condition will decline further.
It's a tough situation, especially if various people don't agree on what to do. I wish you the best in your CGing role. 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 Sep 26, 2012 2:49 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Are we doing the right thing??
Lynn, you are so right! No one knows, when they make out an AD, just what old age and disease processes have in store for them. Some think they would want no interventions and later change their minds and some opt for life-prolonging measures only to find themselves in a thoroughly miserable state and want out. Those of us who have medical POA for our LOs have the power to override their ADs based on changing conditions but, wow, what a responsibility! And, as you found out, Lynn, it's not always easy to enforce an AD when those who are--face it, profiting!--from your LOs being kept alive want to thwart 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.


Wed Sep 26, 2012 3:22 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Are we doing the right thing??
You are right on with your posting Pat! Trying to honor my dad's AD and wanting to see his terrible suffering end sooner rather than later was a fight to the end, literally. I wish I'd had the energy then to have his attorney step in and stop the medical intervention since they wouldn't honor his AD,or listen to me, his POA and most involved family member. A nightmare on top of a nightmare! 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 Sep 26, 2012 4:36 pm
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Joined: Mon Oct 31, 2011 10:44 am
Posts: 20
Post Re: Are we doing the right thing??
I have just signed my mom up for hospice. Hospice is about "care and comfort", especially for people with dementia. My mom is in no way at end of life, but with dementia patients hospice does not use the strict 6 month guideline (at least our hospice does not). I would urge you to talk to hospice again, or try different places. For my mom, she gets more contact with people, and I get more support. You can pull her out of hospice at any time if you feel it is not right for you.
Lisa

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Lisa, caring for mom Betty, 86. LDB diagnosed Oct 2011. In dementia unit near Boston.


Thu Sep 27, 2012 8:04 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Are we doing the right thing??
I wonder if the strictness (or not) of the criteria depends on the funding structure of that particular hospice org. Some hospices are "free" I hear, others get their funds through Medicare or private ins. payments. The hospice org. that served my dad received was not "free" service, and I believe they said that the fed. gov't had tightened up the requirements a few years earlier. So, despite my dad's huge weight loss and terrible decline in physical and mental health, he wasn't "that bad off" twice! OMG, if I were trying to care for him at home or having him taken care of in his own home, and he'd flunked hospice twice I would have really gone crazy! At least his being in an ALF where he was getting good 24/7 care, it wasn't as bad as it could have been. It was shocking to see him at the time and think that he wasn't ill enough to pass the hospice criteria!!! That is interesting to know that a dx of dementia changes the criteria or at least how strictly they are enforcing the criteria. It would be a big help to CGs of dementia patients if they could get help earlier than the estimated 6 mo. All the best to you CGs out there today, 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 Sep 27, 2012 2:51 pm
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Joined: Fri Sep 28, 2012 9:30 pm
Posts: 2
Location: San Diego, CA
Post Re: Are we doing the right thing??
Hi CMT,

I just put my mom on hospice and yes I have to say, it is a relief because the care she gets is from knowledgeable RN's who will see her that day if needed and resolve the problem. I've been able to rely on hospice for the expertise nursing care that was so needed in the "memory care unit" where she resides. I know she's in good hands with hospice although I still need to follow-up with staff on the unit to make sure they carry out the orders and the results.

They pay for all her medications relating to dementia and have provided her with a wheelchair, cushion, hospital bed and an alternating pressure mattress pad. When my mom could no longer hold her head up most of the time, hospice ordered her a reclining wheelchair. All at no cost to my mom and there will not be any bill to follow.

If she lives longer than 6 mos. she can be renewed on hospice or taken off and put back on at another time. Hospice has worked with me as far as what medications I'd like to see my mom continue to take. At this point we are continuing with her Tramadol for chronic pain which covers her very well. Eventually, she won't be able to swallow and it will be replaced with Morphine liquid under the tongue, but she will be comfortable!

A last word. Many times we hang on to the people we love for our own selfishness and benefit, much much longer than we should. I always try to say to myself, would I want to live like this? Look at every aspect of her life as it is today and really imagine yourself in her place. You are not killing her, you're just letting go of the grip you have on her and releasing her into the hands of her maker (whenever that time comes), where she will no longer have to suffer with this degenerative disease that has no cure.

My heart goes out to ya'll and I wish you the best in making these hard decisions.....luannz


Sun Sep 30, 2012 12:58 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Are we doing the right thing??
Well put, Luannz, and my heart goes out to you at this time. It is so hard to see a LO suffer and keep going downhill over a long period of time. Hang in there and take care of yourself while you are taking care of her too. Hopefully she will be released from her suffering soon, 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.


Sun Sep 30, 2012 8:26 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Are we doing the right thing??
im sitting here reading .. with tears in my eyes.. my heart goes out to all of you and the tough decisions you are making... and have made..

sending you strength and many hugs...
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Sep 30, 2012 1:25 pm
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Joined: Sat Sep 06, 2008 3:16 pm
Posts: 11
Post Re: Are we doing the right thing??
Update on my mom:
My dad made the decision to put my mom on hospice care in her SNF. He told me they "talked him into it". Although I felt we were headed in that direction it still made me pause to hear him say it that way. I questioned whether he was sure and he replied "Don't you think it's the right thing?" Ugh!!
Anyway the Admissions nurse from the hospice came to see Mom on Monday and after doing a "chart" evaulation said she was borderline, meaning she barely qualified. Although I was happy to hear that it just confuses me more. I was coming to terms with the fact that the end may be near but now I don't know. I go back to my original question: Are we doing the right thing? We know the hospice care will only be good for her but are we doing this too soon. I am fairly certain she would not have qualified in August when the SNF first recommended it. My dad chose not to sign the DNR as he still has issue with that. He also requested my mom not be told she is on Hospice.
My current mantra is "One day at a time!"
I can't say enough how much this forum has been helpful. The kind words from everyone are so appreciated. You are truly the only people who know what we are all going through. Even though I do not post often I read and gain insight a lot. I thank all of you for words you've written in the past, answers you've shared for my current situation and the help you will provide in the future. Because I know this roller coaster ride will continue.
cmt


Thu Oct 25, 2012 1:40 pm
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