Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 Hi Dorothy, I read this email and immediately felt like crying. Your situation just sounds Terrible beyond all belief! I've experienced not one second of anything even remotely resembling this so didn't know how to respond to you and just signed off for the night. I checked in on , bent over and kissed him goodnight, again, covered him up, again, went into my bedroom and crawled into bed. NO WAY could I even close my eyes.....I was so worried and felt so helpless because of what you and your Loved ones are going through. As I lie there pondering just what a nightmare existence you're all having to deal with I got hit alongside the head with some WAG (which is one full step beyond a simple SWAG). Has anyone ever thought of or heard anyone giving a pacifer (Binky) to their loved one? Don't even understand where the idea came from except, in a baby the sucking seems to bring about a sense of well-being, security if you will. Could that possibly help a Lewy bound adult, too? The sucking motion certainly brings about a sense of calmness in infants.....could that possibly be an answer? Only a thought... but it was worth me crawling out of bed and coming out here to write it down before tomorrow morning when I will possibly have forgotten it. If I lived closer, or even in your state and I had one.......I'd be pounding on your door right about now. Perhaps if you could get one and have your SweetMother-in-Love try it during the day when she is calmest.....you could test and see her reaction? Hoping some Genius can think up somme sort of workable plan for your WonderfulFamily. Sincerely MJ  Jo >________________________________ > >To: LBDcaregivers >Sent: Sunday, October 16, 2011 10:33 PM >Subject: rough day > > > >My mil has been yelling almost all night now for four nights. During the day she is either drowsing off or constantly complaining she feels ill, something’s wrong, her head hurts, back hurts, leg hurts, hand hurts, etc. And we are constantly in alarm mode trying to fix it all. As soon as it’s dark she starts waking up and by bedtime (7pm) she is wide awake and chatty. She is getting hard to feed, hard to give nebulizer treatments, hard to get to drink water. It’s not because she physically cannot drink or eat – it’s because she doesn’t LIKE the medicine and she doesn’t LIKE pureed food (she cannot chew well enough now for semi solid diet) she doesn’t LIKE the nubulizer or oxygen because it’s putting air in her head (she says). I am worn out, the caregiver is worn out. > >I am just venting because there really is not anything we can do about this – unless there is some new wonder drug – we have tried about everything I think except whatever it is they give them in those nursing homes when they are sleeping all the time. Tonight we gave her the extra trazadone and also the small dose of ativan. An hour later she is still yelling her high pitched voice that penetrates everything – walls, pillows, earplugs. “Pleaseee help meeeeeeee….†When I go in and ask what’s the matter she tells me nothing is wrong and denies making any noise. > >The last two weeks have been harder for her because she can’t eat real food (instead of swallowing we find she is storing it in her cheeks then choking on it and also when she has bm it’s very apparent she is not chewing her food at all. Anyway that is what told me it was time to for help and the speech pathologist person that saw her last year advised pureed diet so she doesn’t choke on it. My mil hates it. I’ve been going to a lot of trouble trying to make it as tasteful as possible – but she doesn’t care she doesn’t want it until she can come do another evaluation at the end of the week. I even eat the same food so she won’t feel alone, nope she won’t do it. I explain why she must have food like that and how hard we are trying to make it taste good and she smiles and laughs at me and tells me how cute I am. Actually that’s another strange thing she watches me constantly and remarks how I look and how I make her laugh. I tell her I’m so glad to make her laugh, rather do that than anything else and keep that sense of humor. If I sit with her she will sleep off and on but keeps waking and as she’s waking she’s yelling help me please. My husband or the caregiver can sit with her and the same thing. As SOON as we step out of the room she starts yelling again. I am worried that I need to hire another caregiver so we can all get rest at night. And I’m also worried someone is going to call the sheriff and complain about the noise. She is very loud and we are out in the country – sound really travels out here. The situation is getting so desperate I am even considering trying a small amount of seroquel again – maybe THIS time she would have the desired effect? > >My poor mil. She is fighting so hard. She cannot tell someone why she is the way she is – she doesn’t remember why she can’t walk or swallow or what’s the matter with her but I’m sure she understands she is losing it – losing control over her body and mind and remembering less and less. Sometimes I explain it’s because of the Parkinson’s and she looks at me and says “Ohhhh is THAT what’s causing this. I didn’t know thatâ€. And the next minute she is laughing at me I’m asking her to swallow her food and it strikes her as hilarious. I feel so bad for her and I feel bad for feeing so worn out and thinking how tired I am. > >-Dorothy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2011 Report Share Posted October 17, 2011 Jo, Thank you for your wonderful kindness – please don’t worry so though - we will survive this. Sometimes it just really helps to lay it out plainly where we can see it, instead of all inside. This online group is all I have at the moment and likely for the long run. The binky idea is very good! My mil () has a favorite old stuffed bear that I tuck under her frozen arm during the day. She likes to hold on to it sometimes talking to it. I also tuck it in with her at night but it goes unnoticed. I will continue to look for possible items that might bring that comfort soothing factor in a tactile way. Thank you for getting up and sharing your idea J I used to take her teeth out and soak overnight but without her teeth she got into a habit of chewing and I mean really chewing fast. It looked like was working on a big piece of bubblegum! And that also increased her agitation – the faster she chewed the more agitated she became and more she would holler once we all said goodnight. So to solve this her dentist recommended just leaving her uppers – clean then and do the cleaning routine mouth cleaning before bedtime – then put the uppers in. He said sometimes elderly dementia patients get a habit of chewing like that and keeping one of the dentures in overnight will help stop or decrease it. Maybe that’s kind of like a pacifier idea? She is a little quieter now – struggling to stay awake I think and I hear her call out then quiet for a few minutes then call out… Maybe she will get some sleep eventually. Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Jo Blume Sent: Sunday, October 16, 2011 11:02 PM To: LBDcaregivers Subject: Re: **Dorothy** rough day Hi Dorothy, I read this email and immediately felt like crying. Your situation just sounds Terrible beyond all belief! I've experienced not one second of anything even remotely resembling this so didn't know how to respond to you and just signed off for the night. I checked in on , bent over and kissed him goodnight, again, covered him up, again, went into my bedroom and crawled into bed. NO WAY could I even close my eyes.....I was so worried and felt so helpless because of what you and your Loved ones are going through. As I lie there pondering just what a nightmare existence you're all having to deal with I got hit alongside the head with some WAG (which is one full step beyond a simple SWAG). Has anyone ever thought of or heard anyone giving a pacifer (Binky) to their loved one? Don't even understand where the idea came from except, in a baby the sucking seems to bring about a sense of well-being, security if you will. Could that possibly help a Lewy bound adult, too? The sucking motion certainly brings about a sense of calmness in infants.....could that possibly be an answer? Only a thought... but it was worth me crawling out of bed and coming out here to write it down before tomorrow morning when I will possibly have forgotten it. If I lived closer, or even in your state and I had one.......I'd be pounding on your door right about now. Perhaps if you could get one and have your SweetMother-in-Love try it during the day when she is calmest.....you could test and see her reaction? Hoping some Genius can think up somme sort of workable plan for your WonderfulFamily. Sincerely MJ Jo >________________________________ >From: dsinouye <fullcircle@... <mailto:fullcircle%40sonic.net> > >To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> >Sent: Sunday, October 16, 2011 10:33 PM >Subject: rough day > > > >My mil has been yelling almost all night now for four nights. During the day she is either drowsing off or constantly complaining she feels ill, something’s wrong, her head hurts, back hurts, leg hurts, hand hurts, etc. And we are constantly in alarm mode trying to fix it all. As soon as it’s dark she starts waking up and by bedtime (7pm) she is wide awake and chatty. She is getting hard to feed, hard to give nebulizer treatments, hard to get to drink water. It’s not because she physically cannot drink or eat – it’s because she doesn’t LIKE the medicine and she doesn’t LIKE pureed food (she cannot chew well enough now for semi solid diet) she doesn’t LIKE the nubulizer or oxygen because it’s putting air in her head (she says). I am worn out, the caregiver is worn out. > >I am just venting because there really is not anything we can do about this – unless there is some new wonder drug – we have tried about everything I think except whatever it is they give them in those nursing homes when they are sleeping all the time. Tonight we gave her the extra trazadone and also the small dose of ativan. An hour later she is still yelling her high pitched voice that penetrates everything – walls, pillows, earplugs. “Pleaseee help meeeeeeee….†When I go in and ask what’s the matter she tells me nothing is wrong and denies making any noise. > >The last two weeks have been harder for her because she can’t eat real food (instead of swallowing we find she is storing it in her cheeks then choking on it and also when she has bm it’s very apparent she is not chewing her food at all. Anyway that is what told me it was time to for help and the speech pathologist person that saw her last year advised pureed diet so she doesn’t choke on it. My mil hates it. I’ve been going to a lot of trouble trying to make it as tasteful as possible – but she doesn’t care she doesn’t want it until she can come do another evaluation at the end of the week. I even eat the same food so she won’t feel alone, nope she won’t do it. I explain why she must have food like that and how hard we are trying to make it taste good and she smiles and laughs at me and tells me how cute I am. Actually that’s another strange thing she watches me constantly and remarks how I look and how I make her laugh. I tell her I’m so glad to make her laugh, rather do that than anything else and keep that sense of humor. If I sit with her she will sleep off and on but keeps waking and as she’s waking she’s yelling help me please. My husband or the caregiver can sit with her and the same thing. As SOON as we step out of the room she starts yelling again. I am worried that I need to hire another caregiver so we can all get rest at night. And I’m also worried someone is going to call the sheriff and complain about the noise. She is very loud and we are out in the country – sound really travels out here. The situation is getting so desperate I am even considering trying a small amount of seroquel again – maybe THIS time she would have the desired effect? > >My poor mil. She is fighting so hard. She cannot tell someone why she is the way she is – she doesn’t remember why she can’t walk or swallow or what’s the matter with her but I’m sure she understands she is losing it – losing control over her body and mind and remembering less and less. Sometimes I explain it’s because of the Parkinson’s and she looks at me and says “Ohhhh is THAT what’s causing this. I didn’t know thatâ€. And the next minute she is laughing at me I’m asking her to swallow her food and it strikes her as hilarious. I feel so bad for her and I feel bad for feeing so worn out and thinking how tired I am. > >-Dorothy > > Quote Link to comment Share on other sites More sharing options...
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