Guest guest Posted October 4, 2011 Report Share Posted October 4, 2011 Gosh, Dorothy....Thankfully I realized just how detrimental it was to , early on.....I do understand so much more about the effects that a whole lot of different drugs can indeed have on both those who suffer from dementia (horrendous) and even those who aren't having to face that particular challenge. Me, for instance, I had a heck of a time, in particular it affected me by causing terrible nightmares while I was attempting to get that poison out of my system. I'd completely forgotten all about the sleep walking and waking up to discover that I pretty near cleaned out the fridge the night before.....in a peculiar way, it allowed me, second hand, to personally know how it felt to hallucinate and to not be in control of various situations in my own life.....Lesson learned, first-hand, so to speak. I SO HOPE AND PRAY that your mil can calm down a whole lot and have the ability to stay put and sleep through the night without disturbing herself and those around her. You are indeed a Strong, Brave and Loving daughter-in-law; she is Blessed indeed to have you in her corner. I am quickly coming to the realization that I'm going to have to break down and find a CG to come into our home and keep company there in his room all night. It sounds so heavenly to me I just can't imagine myself having the ability to let go and have another take complete charge of my Sweet. Things seriously have to change, though, and quickly. Can't continue much longer on the number of un-interrupted hours of sleep I'm allowed these days.  I'm just finding dealing with this illness 24/7 a bit excessive.  I wish good things ahead for both your MIL and also for you, Dorothy; thank you so much for all your insight, please excuse my ramblings, thanks for listening. Always MJ  >________________________________ > >To: LBDcaregivers >Sent: Monday, October 3, 2011 10:41 PM >Subject: RE: **AMBIAN** > > > >It is an insidious drug for sure! Glad you were able to get off it without a lot of trouble Jo J > >Ambien can be tough. My husband took it and got the sleep walk stuff with it – we would wake up and eat or take the dog out and not remember. He spoke with his sister on the phone one night and had no memory of it. I had been telling him the things he was doing late at night and he didn’t believe me but when his sister confirmed he had done something and had no memory he decided he better stop taking it. It took three weeks that he could sleep. The first two weeks were hard on him and he actually had to take time off work. It’s ok for short term but seems to be risky if taken long term. > >I also tried Ambien but after a few weeks found it made my tongue swell! A mild allergic reaction L So that was it for me. As for sleep at night I find a half a glass of good zin does well for me - a whole glass if it’s been a particularly stressful day. > >My mil cannot tolerate Ambien at all – and we have been trying all kinds of things to get her to sleep at night (with doctor’s blessings of course). It makes her agitated and hallucinate (worse). She yells all night off and on, “help me somebody help me pleeaassseeeeee†and soon. Lately she is seeing ghosts but so far they are not threatening. They have bright yellow hair and she says they are stupid and don’t talk. She talks all night to them, telling them about her family etc. and alternates between that and calling to her husband (deceased nearly 30 years ago) who she calls “Daddyâ€. Every night I wonder if she was in a nursing home what drugs would they try giving her to get her to sleep – when everything we’ve tried (small amounts) just make it worse? I understand it’s pretty standard if a person doesn’t sleep and carries on at night the protocol is drugs. > >Dorothy > >From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Jo Blume >Sent: Monday, October 03, 2011 2:01 PM >To: LBDcaregivers >Subject: Re: **AMBIAN** > >My Sweethusband, , was also precribed Ambien by his dr. >Soon enough I discovered that it simply wouldn't do! They laid around the kitchen cabinet for a few months until I had my scheduled 'clean out the cabinets' day. I checked it out and decided, what the hay...I'll just take them myself, judiciously, of course.....I began with half a pill and proceeded to finish off the small container. They worked for me, allowed me to wake and function when I was needed with no side effects at all (I thought) >Of course when the bottle was empty I had it refilled. did that 2 more times...by then I was Hooked, good....let's make that BAD! >When his oncologist asked if I needed refills, of course I shook my head in the affirmattive. Crappidity, this went on and on and on ad naseum. I finally sat myself down and inforned myself that I was quitting this crutch. I tried melatonin, a natural sleep aid, I couldn't believe it but it worked.....after a few weeks I was able to fall asleep without the ambian, eventually without the melatonin, also. Long story short.....I self-medicate now with a bottle of Mike's hard lenonaide each night just before bedtime. I can easily wake up each time cries out, snores, moans, you name it. >Don't know how it might work to relax an LBDpatient..... hmmmmmmm.....thinking, perhaps we'll try it and see....am I Bad? > >Jo > >>________________________________ >>From: Norma <Normal@... <mailto:Normal%40nytimes.com> > >>To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> >>Sent: Monday, October 3, 2011 12:46 PM >>Subject: Ambien >> >> >> >>I am writing--yet again--in bewilderment and frustration for other caregivers. I was contacted by a caregiver who lives in New York regarding her mother who is in an assisted living facility in Sacramento, CA. She is flying out there this week and will handle the situation the best that she can now that she has better information. The daughter was aware of not giving anti-psychotics drugs but had no idea that AMBIEN should not be given. My frustration lies with the doctors who are giving AMBIEN on a regular basis to ANY elderly person (she is 84 years old), let alone a person with LBD. Here is what she wrote: >> >>On Sept 2009,and before,she was on the 5 mg Ambien not extended release >>On November 2009, her dosage was increase to 10 mg Ambien, but not extended release >>On Feb 2011 her Ambien dosage increased again to 12.5 mg but EXTENDED RELEASE -- RESEARCH SAYS NO ONE SHOULD BE ON IT FOR MORE THAN 2 WEEKS --she's been on it for 8 MONTHS!!! no wonder she can't move or function during the day like she used to!!! >> >> >> >> >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2011 Report Share Posted October 4, 2011 Hi Jo J I’m so glad to hear you will get an overnight caregiver for your dear husband. You have to sleep! That’s the main thing necessary for us caregivers to survive this. I am so glad we have someone overnight – we have two and they are friends having worked these cases together before and do 4 and 3 alternating. It took me over a month to be sure they were all up on my mil and her nuances (they taught me a few things too for sure) then I could start sleeping more. It’s been 7 months now and I can sleep through the night, wake up and get coffee (they make coffee!) and go in to say goodmorning and sit and hear how things went while I wake up. I feel thoroughly pampered. I hope and pray you find someone as wonderful as I have – and don’t settle for less than you and need because there are a lot of good caregivers out there. Just keep looking as you need to find a good fit then go from there. The ones who come here do sleep but do so with a baby moniter and if there is any problem they get up to attend to her. Also they get up at set times to change diapers, turn her and dispense medicines as needed. They talk her “down†from agitation or hallucinations or being lost and not in her room and on the rare occasions they feel they need me to come they gently wake me (three times in the last 5 months). As far as the drugs, I agree. I have been learning a great deal and figure if these can affect someone with a disease that is damaging their brains – what the heck can it do to those of us who have no signs of that (perhaps not yet)? Like some who go in for surgery and are never the same after – it seems to speed up dementia onset. So I am being VERY careful about medicines I take and if I have to take anything “funny†like a muscle relaxer for a strained back I do so only on a very low dose short term basis and use other things to manage like heat, ice, rest, gentle stretching. As far as my own parents I have been reviewing their medicines as possible – my father is very cooperative but my mother is a problem – she gets defensive and she also squirrels things away that has me worried. Anyway I to try to educate them about things – especially bladder control medicines and other things that so many doctors just hand out. I have a very sneaking suspicion about those bladder control meds myself and when my mother was taking some I noticed changes in her personality and confusion that she did not realize she had. I just don’t feel all these side effects, especially ones that have to do with brain function, are acceptable unless there is no other way. I’m trying to get both my parents into treatment with Urgent PC which works very well for bladder control issues. Anyway, onward we go. Best of luck with finding a good fit for part time caregiver J Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Jo Blume Sent: Tuesday, October 04, 2011 2:25 AM To: LBDcaregivers Subject: Re: **AMBIEN/Dorothy** Gosh, Dorothy....Thankfully I realized just how detrimental it was to , early on.....I do understand so much more about the effects that a whole lot of different drugs can indeed have on both those who suffer from dementia (horrendous) and even those who aren't having to face that particular challenge. Me, for instance, I had a heck of a time, in particular it affected me by causing terrible nightmares while I was attempting to get that poison out of my system. I'd completely forgotten all about the sleep walking and waking up to discover that I pretty near cleaned out the fridge the night before.....in a peculiar way, it allowed me, second hand, to personally know how it felt to hallucinate and to not be in control of various situations in my own life.....Lesson learned, first-hand, so to speak. I SO HOPE AND PRAY that your mil can calm down a whole lot and have the ability to stay put and sleep through the night without disturbing herself and those around her. You are indeed a Strong, Brave and Loving daughter-in-law; she is Blessed indeed to have you in her corner. I am quickly coming to the realization that I'm going to have to break down and find a CG to come into our home and keep company there in his room all night. It sounds so heavenly to me I just can't imagine myself having the ability to let go and have another take complete charge of my Sweet. Things seriously have to change, though, and quickly. Can't continue much longer on the number of un-interrupted hours of sleep I'm allowed these days. I'm just finding dealing with this illness 24/7 a bit excessive. I wish good things ahead for both your MIL and also for you, Dorothy; thank you so much for all your insight, please excuse my ramblings, thanks for listening. Always MJ >________________________________ >From: dsinouye <fullcircle@... <mailto:fullcircle%40sonic.net> > >To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> >Sent: Monday, October 3, 2011 10:41 PM >Subject: RE: **AMBIAN** > > > >It is an insidious drug for sure! Glad you were able to get off it without a lot of trouble Jo J > >Ambien can be tough. My husband took it and got the sleep walk stuff with it – we would wake up and eat or take the dog out and not remember. He spoke with his sister on the phone one night and had no memory of it. I had been telling him the things he was doing late at night and he didn’t believe me but when his sister confirmed he had done something and had no memory he decided he better stop taking it. It took three weeks that he could sleep. The first two weeks were hard on him and he actually had to take time off work. It’s ok for short term but seems to be risky if taken long term. > >I also tried Ambien but after a few weeks found it made my tongue swell! A mild allergic reaction L So that was it for me. As for sleep at night I find a half a glass of good zin does well for me - a whole glass if it’s been a particularly stressful day. > >My mil cannot tolerate Ambien at all – and we have been trying all kinds of things to get her to sleep at night (with doctor’s blessings of course). It makes her agitated and hallucinate (worse). She yells all night off and on, “help me somebody help me pleeaassseeeeee†and soon. Lately she is seeing ghosts but so far they are not threatening. They have bright yellow hair and she says they are stupid and don’t talk. She talks all night to them, telling them about her family etc. and alternates between that and calling to her husband (deceased nearly 30 years ago) who she calls “Daddyâ€. Every night I wonder if she was in a nursing home what drugs would they try giving her to get her to sleep – when everything we’ve tried (small amounts) just make it worse? I understand it’s pretty standard if a person doesn’t sleep and carries on at night the protocol is drugs. > >Dorothy > >From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Jo Blume >Sent: Monday, October 03, 2011 2:01 PM >To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> >Subject: Re: **AMBIAN** > >My Sweethusband, , was also precribed Ambien by his dr. >Soon enough I discovered that it simply wouldn't do! They laid around the kitchen cabinet for a few months until I had my scheduled 'clean out the cabinets' day. I checked it out and decided, what the hay...I'll just take them myself, judiciously, of course.....I began with half a pill and proceeded to finish off the small container. They worked for me, allowed me to wake and function when I was needed with no side effects at all (I thought) >Of course when the bottle was empty I had it refilled. did that 2 more times...by then I was Hooked, good....let's make that BAD! >When his oncologist asked if I needed refills, of course I shook my head in the affirmattive. Crappidity, this went on and on and on ad naseum. I finally sat myself down and inforned myself that I was quitting this crutch. I tried melatonin, a natural sleep aid, I couldn't believe it but it worked.....after a few weeks I was able to fall asleep without the ambian, eventually without the melatonin, also. Long story short.....I self-medicate now with a bottle of Mike's hard lenonaide each night just before bedtime. I can easily wake up each time cries out, snores, moans, you name it. >Don't know how it might work to relax an LBDpatient..... hmmmmmmm.....thinking, perhaps we'll try it and see....am I Bad? > >Jo > >>________________________________ >>From: Norma <Normal@... <mailto:Normal%40nytimes.com> <mailto:Normal%40nytimes.com> > >>To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> >>Sent: Monday, October 3, 2011 12:46 PM >>Subject: Ambien >> >> >> >>I am writing--yet again--in bewilderment and frustration for other caregivers. I was contacted by a caregiver who lives in New York regarding her mother who is in an assisted living facility in Sacramento, CA. She is flying out there this week and will handle the situation the best that she can now that she has better information. The daughter was aware of not giving anti-psychotics drugs but had no idea that AMBIEN should not be given. My frustration lies with the doctors who are giving AMBIEN on a regular basis to ANY elderly person (she is 84 years old), let alone a person with LBD. Here is what she wrote: >> >>On Sept 2009,and before,she was on the 5 mg Ambien not extended release >>On November 2009, her dosage was increase to 10 mg Ambien, but not extended release >>On Feb 2011 her Ambien dosage increased again to 12.5 mg but EXTENDED RELEASE -- RESEARCH SAYS NO ONE SHOULD BE ON IT FOR MORE THAN 2 WEEKS --she's been on it for 8 MONTHS!!! no wonder she can't move or function during the day like she used to!!! >> >> >> >> >> > > Quote Link to comment Share on other sites More sharing options...
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