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      CommentAuthorol don*
    • CommentTimeDec 20th 2011
     
    For almost three weeks now LO can't keep her head up,chin on her chest,they've x-rayed,had physicle therapist work with her, tried cervical collar all to no avail,today the director told me they were cutting back on aricept an namenda because at this stage it wasn't helping, I asked about the head problem an if she had ever seen it before she told me it isn't unusal at the end stages,I knew she wasn't doing well but when director mentioned "end stages" well it was a very long ride home
    • CommentAuthorLFL
    • CommentTimeDec 20th 2011
     
    Don, there was another thread regarding this topic...I'll look for it and bring to the top if I find it. I've notice DH is beginning to do the same thing on occassion-while sitting in car or on couch, his heads drops where his chin is almost touching his chest. At last for now, when I mention it to him, he keeps his neck straight. DH is not on namenda or aricept, but is on seroquel and neurontin. It may well be associated ith the decline-DH moved from early stage 6 to mid stage 6 after he was hospitalized in August for aspiration pneumonia.
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    Ol Don

    Don't let "end stages" become a sure thing for you. My SIL has had problem of not being able to hold her head up for almost four years now. Yes, she could be considered in the end stage but end stage can last a very long time. I really think a thick foam collar which keeps the head elevated should be used. Vision is better and not skewed. There must be something out there to be used for this purpose.
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      CommentAuthorol don*
    • CommentTimeDec 21st 2011
     
    They tried the collar but she refuses to wear it,takes it off as fast as they put it on,as of tueday she still knew me,maybe not my name but wanted to be held,doesn't talk much,seems like she's really gone downhill the last month or so an as everyone has stated a long lonely battle an Christmas was her favorite time of year,bah humbug,no tree here,no Christmas spirit,I'll go to candlight service sat night but my thoughts will be on LO who enjoyed the season so much
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      CommentAuthormoorsb*
    • CommentTimeDec 21st 2011
     
    I think it is drug induced. I have seen the same thing in my wife, if she is over medicated she will loose control of her neck and her head just sits on her chest. I plan to take her to candle light service, it may be her last time.
    • CommentAuthordivvi*
    • CommentTimeDec 21st 2011 edited
     
    i am pro drugs but sometimes i agree they can be misdosed. and they can become toxic to kidneys that are slow to detoxify. old don maybe check with the dr to see which drugs may could be eliminated to see if off them shes better. they can always put her back on. i wouldnt use any of the potent mood drugs if she non aggressive or combative. per hospice dr, i just had DH on a VERY low dose called ABH which is a skin rubbed in concoction dose of ativan, benedryl, and haldol to help him reduce anxiety at bedtime. within 2 doses he was non responsive and hard to get to eat or drink. hes been off them now a week and back to where he was prior meds i hope. even very low doses of these power meds can cause extreme physical side effects so its a hit miss which they can tolerate or not.
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    I am sorry to see you are at this phase. Yes this is something I witnessed with my mom during her last days. How long it actually was a problem I don't know as I flew to TX when one honest nurse told me the end could be near or she could soldier on for months..so as I said this condition could have gone on much longer than I know.
    I would guess that in my mom's case it had something to do with her lack of nutrition from her inability to swallow or eat. AT that state when I did see this, we were lucky to get 500cc's of any kind of fluid in her.
    Perhaps others can shed more light on this condition. It is so hard and sad to see. Arms around at this difficult time.
    One thing that sort of helped a little for my mom when she was in bed was to roll up a small towel and put it behind her head, at the back of her neck. Another thing that might help while she is in bed would be one of those travel pillows to keep her head from leaning on her shoulder and then causing muscle pain in her neck.
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      CommentAuthorAnchor20*
    • CommentTimeDec 22nd 2011 edited
     
    Ol Don, I googled this site when we found out Kathryn had Alzheimer's. This is what it said about this issue: 7f substage, in which AD patients additionally lose the ability to hold up their head independently. It is frrom the Fisher's Center for Alzheimer's Reserach Foundation Chinical Stages.

    This is the web address for their 7 stages: http://www.alzinfo.org/clinical-stages-of-alzheimers

    Just remember that everything doessn't apply to every case of Alzheimer's. As I have watched Kathryn continue to decline I have gone back to this site many times. It breaks the 7 stages down into many substages. I have found it to be fairly acccurate so far. Kathryn as not experienced every thing in every stage or substage so like any other site it may not all apply in the case of your LO.

    JimB
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      CommentAuthorol don*
    • CommentTimeDec 23rd 2011
     
    Anchor 20 thanks for info,checked it out,sounds like stage 6-7 to me,what a way to leave this place huh?Feel really bad for the young ones just starting this journey,espescially the ones with kids still at home,hear breaking for sure,thanks again for web site
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      CommentAuthorAnchor20*
    • CommentTimeDec 23rd 2011
     
    Ol Don, I'm glad it was useful. Of all the sites I have seen it appears to give you the best insight. It really breaks it down into the sub-stages. I know they say no two are alike and that may be true. Even if doesn't follow it exactly it is still very informative of what you may see in the future at some point. I know what you mean about "what a way to leave this place" My only prayer is that one night Kathryn goes to sleep and just doesn't wake up so she will not have to go thru Stage seven. It is hard for everyone. There are times when I think I don't want to make it thru this without Kathryn. I can't imagine my life without her. She is a part of my heart that when this is over will never heal.

    JimB
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      CommentAuthorJudithKB*
    • CommentTimeDec 24th 2011
     
    I agree with you, the Fisher site is the best for learning about stages. My dh
    has declined almost like that site explains the stages. He is now all of 5 and
    a couple of stage 6.