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 Frank's rollercoaster 
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Frank's rollercoaster
Like New England weather, we have constant change. 8/20 Frank stopped eating and drinking and didn't get out of bed for 5 days, had lost 30 lbs since May, went on Hospice, under failure to thrive. 8/26 he started to eat VERY small amounts, 8/30 he's walking around the yard trying to help pick up sticks after the storm. 9/5, cannot walk without assistance, 9/9, cannot stand, even with assistance. I'm going to email his Dr tomorrow. I was gradually taking him off Aricept and Namenda, because he's on Hospice, finished last pill 9/3, 2 days later he was losing the ability to walk. Do you think there could be a connection????

My fear was IF he became immobile, I wouldn't be able to keep him home. Time to go back to the drawing board. Between Hospice and private caregivers, I have someone 4-5 mornings a week that can help me get Frank up and to the recliner. The other 2-3 days, my brother said he can stop in and he'll stop on his way home from work each night and help me get him back to bed. So, for the moment, we have a plan.

Thanks for any thoughts about the walking or lack of.

Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Sep 11, 2011 7:51 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Frank's rollercoaster
Gerry - I'm sorry to hear about your LOs decline. I think it's amazing that he's ill enough to be on hospice and that he's still mobile at all! Perhaps I'm myopic, but aren't most people's LBD LOs who are at the stage of needing hospice not even able to help others help them turn, sit up, transfer? 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.


Sun Sep 11, 2011 10:30 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Frank's rollercoaster
Lynn, When Hospice came to evaluate him he hadn't been out of bed or eaten for 6 days. Just laid in bed gazing at the ceiling, with no communication of any sort. He's eating now but isn't able to help with transfers, dressing, toileting or feeding but failure to thrive is no longer an issue.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Sep 11, 2011 2:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Frank's rollercoaster
It's all such a mystery, isn't it? It's so difficult when their mobility is lost and then they can't help you help them. I'm glad you have help so you don't hurt yourself. 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 11, 2011 2:18 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Frank's rollercoaster
Well, it certainly is a roller coaster! I am so sorry for what you are going through.

I have no thoughts/experience on the impact of d/c those drugs, and I will be very interested to here what the doctor has to say.

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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


Sun Sep 11, 2011 2:20 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Frank's rollercoaster
Gerry,

If you started discontinuing the Aricept and Namenda in late August when Frank went on hospice, I wouldn't think that the loss of the ability to walk has anything to do with the removal of the Aricept and Namenda. It sounds like Frank is on an overall decline. (That weight loss is huge!)

I think his desire to protect his homestead and to help you are what allowed him to help in the yard on 8/30. It sounds like your husband will want to protect you until the very end.

Robin

PS. I greatly admire that you can see this so clearly and explain it so succinctly. Frank's MD must love you.


Sun Sep 11, 2011 10:15 pm
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Joined: Tue Sep 06, 2011 2:28 pm
Posts: 15
Post Re: Frank's rollercoaster
My heart goes out to you! When people enter hospice they often have an upswing, I am interested too in what the dr says. He can be in hospice and on aricept and nameda I don't know if that is why it was stopped or not. In hospice you drive the plan of care. If it was due to hospice, you can ask for them to restart them. You can also ask them to provide a in home physical therapy consult for transfers and ways to deal with the immobility. They also can provide an aide daily to assist with personal cares. They can't always be there at the time you need but they are bound to provide that service. If you have problems tell them you are goingnto call Medicare for a second opinion. Hope this helps, hospice has slot to offer but some for profit hospices espicially don't always offer!


Mon Sep 12, 2011 12:24 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 235
Post Re: Frank's rollercoaster
Oh, Gerry, that sounds so tough - you will be in my thoughts these weeks. But it is so generous of you to share your thoughts and your experience, and the vivid picture of how unpredictable the course of this disease can be. We are early in this, and it helps me so much to learn from those who have walked these paths already.
Take care of you, too -
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD


Mon Sep 12, 2011 12:25 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Frank's rollercoaster
Hospice has been wonderful, each time they are here they ask if I need any supplies or equipment. I am greatful for the help and experienced eyes to check Frank. I am able to buy all our supplies so I'll continue to do that, Medicare is in enough financial trouble. I was told, in general, they discontinue meds such as Aricept, I checked with his Dr. and he said no problem and he didn't think the Namenda was helping at this point so I could discontinue that also.

Thank you All so much. I'll send my email this morning, he's usually back to me in less than 1/2 hour, I'll let you know.

Fondly,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Sep 12, 2011 5:36 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Frank's rollercoaster
Frank's Dr doesn't feel there is a connection with stopping Aricept and Namenda and his not being able to walk. He's been having a steady decline for months and this is probably part of it.

Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Sep 12, 2011 8:56 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Frank's rollercoaster
OK, thanks for passing along the info.


Tue Sep 13, 2011 6:09 pm
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Joined: Tue Sep 06, 2011 2:28 pm
Posts: 15
Post Re: Frank's rollercoaster
Thanks for passing on the info, I was hoping that there was a connection, I am so sorry! I just have to say one more thing about hospice, because it is my work, and I am so passionate about the good it can do, hospice saves Medicare millions every year. The future will bring guidelines that bring people into hospice sooner. In addition in home palliative care will be coming because they save Medicare so much! Hospice gets paid a flat rate per day no matter how much or how little of it's services you use, so Medicare doesn't pay them more, people pay into Medicare for years and are entitled to this special care if they qualify for it! Ok I will try to be quiet about it now! There are just so many miconceotions I always want people to get what they want and need! Take care I will keep you in my thoughts and prayers!


Wed Sep 14, 2011 10:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Frank's rollercoaster
I hope you are right about people being able to receive hospice services SOONER, but in reality they are now receiving them LATER than they used to. At least that is what I was told when my dad was so bad off and he flunked hospice the first time. They said the criteria were getting tighter and tighter for being admitted to hospice.

_________________
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 14, 2011 11:09 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Frank's rollercoaster
From what I read of the Obama-care bill, it looked as if Hospice had become a very expensive item in the budget and its services are going to be reduced.

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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.


Wed Sep 14, 2011 11:32 pm
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Joined: Tue Sep 06, 2011 2:28 pm
Posts: 15
Post Re: Frank's rollercoaster
True obamA is after hospice, in this time of Medicare reduction. Mainly because for profit hospices play the system so most hospices are getting scared to admit dementia patients. So far this year my agency has had 5 charts called up for additional review for dementia diagnosis only. It will take a bit of time, but the tide will turn as research bears out the cost savings of hospice when administered correctly.
The facts truly are that there is also a huge amount of money to be made in hospice and folks see that and open a hospice, tell people they care, then collect the daily per diems and under serve their patients and bank roll the money. Which then hurts the hospices who are not in it for the money, and then Medicare sees the abuse of some and tightens the control on all. So yes we are not there yet but we will be. How users of hospice services can help is to use non profit hospices, call the office of the inspector general (OIG) and report hospices that are not following the rules especially when it comes to marketing. Hospices can spend very little of their budget in recruiting pts, yet we see the for profits in care centers bringing in expensive meals to nursing home staffs and giving out goodies like there is no tomorrow. So once we can get public attention to this and shut down those that abuse the system, then the system will right itself. But yes we get scared to admit dementia due to the current scrutiny. Remember any for profit company has to pay dividends to it's share holders, non profits pay their dividends to providing full services to their patients!
Hope this makes sense, I am really tired but I really want people to know the truths, and why they are seeing what they are. I am certain it will get better but it takes awhile to sort out the bad apples!


Thu Sep 15, 2011 3:09 am
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