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 suffer pain or medicate 
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Joined: Sat Oct 27, 2007 9:16 pm
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Location: tennessee
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Post suffer pain or medicate
Husband had hip replaced 11/12. Had increased delirium as expected following surgery, instead of gradual improvement going downhill fast. The only lucid thing he said today "Maybe the surgery did cause me to lose my mind." He's was on percoset for twoi days then switched to the milder darvoset, and is taking .5 klonapin as needed every few hours for agitation. + aricept. Wondering after looking up darvoset if we could switch him to naprosyn and see if that would help confusion. He can't rest, he's completely incontinent, negative for a urinary tract infection, can't seem to get his hand where the food is or the food to his mouth. In a nursing home with great rehab, and is doing well with that till yesterday when he couldn't follow instruction and focused on needing car keys. I'm also wondering about trying him at home even though his hip rehab is incomplete, and I'm not strong enough to handle him alone to see if that would orient him. He has to be watched 24 hours to prevent getting out on that new hip. The combination of dementia and the risk of dislocation of the hip is overwhelming. When I say "no" he is angry and at first violently so, the violence has subsided, but not the anger. At the same time, he wants me there every minute. I would welcome any advice from anyone, except "I told you so." Thanks

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Thu Nov 22, 2007 9:06 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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My $.02:

Definitely do NOT take him home.

Talk to the MD about the pain meds. If the MD thinks the Naprosyn will touch the pain, so be it. My GUESS is that the kind of pain one gets from a hip operation cannot be touched by something less than Percocet, Darvocet, etc.

It could be that the delirium is from being in a hospital and now in rehab, or from moving around so much. It could be that the rapid decline is from anesthesia used during the hip replacement, or other meds he took before the hip replacement.

Your topic subject was "suffer pain or medicate." If that's the choice, never suffer pain.

Sorry if this is a repeat from what I've said before: has your husband communicated his decision about feeding tube? Intubation? Resuscitation? Have you made arrangements for brain donation? If not, get these decisions and plans made now.

Good luck,
Robin


Fri Nov 23, 2007 12:23 am
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Location: tennessee
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Thanks Robin, he has living will, and didn't want to donate organs, does that preclude brain donation. I'm all for it and I have the health poa. Who does this- a lawyer? Does he have to sign it, he's too demented for that to be legal. Are there blank forms available. He's been blessed with high pain tolerance, which is why I thought the naprosyn might work, then of course it didn't work before which is why he insisted on the hip operation and the left hip is still bad. I just thought if bringing him home would make him better, maybe that's his last chance. I'm at the point where I have thoughts like "okay, he falls and the second surgery kills him, that's better than the living hell he's in now, cause he'll go to heaven and have a new body. If I didn't know that, I couldn't stand this. Still, there I am, blocking him with my body to keep him in bed. Did you read my other post, about nursing homes. Still unanswered questions there. Course finances plays into this too. Sitters & private room not covered by medicare, can do this for a while but longterm will be a problem. Sorry incoherent, got to hurry and get back to him.

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Fri Nov 23, 2007 7:27 am
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The brain is an organ, but it is not being donated for someone to use, of course! It is being donated for two things -- autopsy (so you and, importantly, your children, if any, know what he's been battling) and research into LBD.

Perhaps what would be in most keeping with his "no organ donation" wishes would be to ask them to perform an autopsy of the brain but destroy the tissue thereafter. Very sad because the tissue won't be used to help anyone else, but at least you'd have an answer.

If that's the case (autopsy-only), you won't be able to work with a brain bank. (Well, I should say no brain bank I know of will do autopsy-only.) You would need to work with a hospital or with a private autopsy service (American Autopsy is a good one and they operate nationally).

You can sign the papers yourself.

If the naprosyn didn't work before, there's no reason to think it will work now.

In many cases with these diseases, death would be a blessing. But the physical and emotional burden of having him at home will kill you too! I would only take him home if he were on hospice, if you knew he didn't have long left, and if you throw lots of money at the problem so you have help. No way would I let him home if he can get out of bed, or if it could continue for longer than a few weeks. My $.02.

Do you have any family? Your husband? It seems you have no help and support.


Fri Nov 23, 2007 12:46 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Post Robin, you got my attention!
So, if I do nothing and death should come "like a thief in the night" for my loved one and I do not have an arrangement made for the brain examination it would be too late? We would never know for sure what has caused these last years to become so sad.

The world's greatest procrastinating Polly Anna, Dorthea

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"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Fri Nov 23, 2007 4:32 pm
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Yes, it would be too late. You must make the arrangements NOW. Many brain banks require harvesting within 8 hours of death. The max I've seen is 24 hours of death.

I would advise you to ask a close family friend or another family member-- someone who will likely either be there at the end or is one of the first people you'd call -- be in charge of notifying the brain bank upon death. The brain bank should be called right after the funeral home.


Fri Nov 23, 2007 5:05 pm
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Joined: Sat Jan 27, 2007 8:38 pm
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Re: Pain management ... are morphine or demerol an option for someone with LBD?

And Melinda, most all of us have had those thoughts about wishing the LBD would be accelerated by an event (e.g. another hip break) or just quickened in its progression so that our LO would be past all this and in that perfect place. When I first found this forum, one of the most calming things I ever heard was that I shouldn't feel guilty for having those thoughts. So if you are, please don't -- it's natural and comes from your desire to see your LO's torment end.

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Fri Nov 23, 2007 8:37 pm
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Guilt:
I would think one of the most important things to remember when you have thoughts of LBD being over and your loved one no longer suffering and we all have them at one time another during our roll as a caregiving, we must remember it isn't the person with LBD that we want gone, it is the LBD not the person we want gone, I just wish I had learned that before my husband passed, I didn't and after he left the guilt ate me up alive, I would say over and over how could I wish such a thing, I am not sure of the turning point where I realized it wasn't Jim I wanted gone but the disease.


Sat Nov 24, 2007 9:24 am

Joined: Thu May 17, 2007 10:17 pm
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Irene on "guilt".
I am so glad you wrote this. I have felt so guilty having these thoughts and I thought I was an awful person to have these thoughts. But, to know others have these thoughts, as well,makes mefeel some better. I love
Ronald , my husband of 45 1//2 years, and father to our 6 children,
very much, but, this disease has changed him to someone I hardly know at times. I feel like his mother some days instead of his wife. I just want life back to where we were a"normal " couple with a future ahead of us.
Now I know that will never be (unless some miracle happens). I want the disease gone, but, not him. But, then reality sets in and I know it can't be that way. I have told my children if I couldn't pray, I couldn't make it through this. Prayer is the only thing that makes sense.
I hope I don't sound too awful. I am just having a very bad day.
blessings to you and all with LO's with LBD>
maryangela


Sat Nov 24, 2007 3:28 pm
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"We want the LBD gone" I have a friend whose son had a horrific tumour which eventually killed him. She said to me that in order to get rid of the cancer which was destroying her whole family she had to lose her son. I didn't understand and even judged her, God forgive me. Now I know. God has a way of teaching us through our hardships, I think Romans 8:28 applies, and it is not punishment, but part of His mercy and grace.

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Sun Nov 25, 2007 9:20 am
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re pain & med: Husband had psychotic event Fri and the psychiatrist was called, and so thankful, answered his page and prescribed two 50 mg doses of seroquel. The first worked immediately and lasted about 6 hours then they gave him the second. Saturday he woke up feeling drugged and then as the day wore on and the seroquel wore off was sweetly delirious. No confrontations, ate well, as good as he has been since surgery, which seemed bad until lately! Still couldn't do hip rehab. The nurse in charge taped a handwritten note describing Lbd and neuroleptic and anti-ch sensitivity to the front of his chart, and that only his psych could prescribe or a dr familiar with lbd. That gave me the ability to leave with much lower anxiety level. She then hugged me, and said "my grandpop had something like this, I know what you're going thru." There have been many such blessings in the midst of this.

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Sun Nov 25, 2007 9:30 am
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Melinda,
Is your husband in danger of getting kicked off the Medicare 100 SNF days benefit if he's not doing rehab? Or, is there some new medical need that is keeping him on Medicare?
Robin


Sun Nov 25, 2007 2:37 pm
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Robin, have no idea. Didn't cross my mind. Sat. they tried and he walked about 10 feet and sort of fell back in their arms. Everyone came running. His blood pressure wasn't too low, so they decided it was after effect of the seroquel. Just got home. Had to call the psychiatrist twice tonite. He tried a 25 dose of seroquel with a second dose if the first didn't work. The first dose didn't make a dent, the second gave him about 30 min. peace. So psych prescribed remeron, with a backup 3 hours later of increased dose of klonopin. And I came home, and now I'm going to bed.

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Sun Nov 25, 2007 11:26 pm
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