Guest guest Posted September 23, 2011 Report Share Posted September 23, 2011 I have two questions I've run up against recently in caring for my mother in law. 1 - what about restraints? What are regulations about them? My mother in law constantly tries to get out of her wheelchair now and even will try to get out of her bed. She is BARELY ambulatory but she doesn't understand if she gets out of the chair she is on the floor. We have had a trip to the ER already because she wiggled forward enough to fall out of her chair. The ER doc suggested we put a belt around her to keep her from falling out of the chair. One of the caregivers we have helping us tells me she cannot do this because it's a restraint. I want to keep everyone happy and safe. My mother in law is definitely not in her right mind - she is delusional and so on. And if left alone for 30 seconds or more she tries to get up - which makes getting lunch, pills, or having a quick trip to the bathroom very difficult. I am in my own mind very comfortable using a belt to buckle her into her wheelchair so she can't get to the edge and fall out. With her bed I am strapping pillows all around the rails which gives her nothing solid to pull on and keeps her from sliding out under the rails. I would really appreciate knowing if there are laws about this and what can be done? Do I need a doctor's order maybe? 2 - Provigil - has anyone here tried this? I have read a few places people trying it to see if the wakefulness it promotes during daytime will help with nighttime sleeping habits. I have seen some mixed results. Has anyone heard of using this with LBD (even small amounts) and has there been any success? My mil wants to sleep all day and then as soon as it's bedtime her eyes are wide open and she won't sleep but yells all night. We have been dealing with this problem for over a year now, intensely, and have exhausted everything else but maybe trying something to keep her awake during the day time. Personally I doubt it will help but I thought I'd ask and see if it might be worth trying at least. My mil is declining bit by bit but so far we are managing ok without hospice and I'm really glad at this point. The two caregivers that alternate are great and I can carry on normally now without even feeling infringed on at all. I've got two of the rescue dogs adopted so far and working on the other two (they need better manners lol). My mother in law is happy as possible, cared for and we know it's the best that can be done under the circumstances. The last few months we put her to bed, give her meds, say goodnight and close the door - she usually yells and hollers for an hour before sleeping a few hours, or just yells off and on all night. She thinks it's time to get up or thinks she has a stomach ache or thinks something that we have figured out is just not so. That's the hard part. There is just no medication we've found that will help her sleep at night, so this is all we can do - and keep her awake during the day. She is barely able to walk with great assistance now, often doesn't know if she's sitting or standing or lying down. Recently crabby and clamped her jaw refusing meds so I had to syringe them into her mouth and two times of that she hasn't tried it again. Never a dull moment! -Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2011 Report Share Posted September 23, 2011 Hi Dorothy, I can answer #1 question possibly. 1 - what about restraints? When Jim first started out in the nursing home he had full rails around the bed. Since every nursing home is licensed by the state they have to go with government regulations. The state wanted only half rails on the beds and no restraints on wheelchairs. The state would fine the nursing home if they were seen using any types of restraints. I was livid over this and asked for a waiver from Jim's doctor since Jim too would attempt to stand up and also could wrap his legs around the half rail on the bed and pull to a stand and think he could walk. All they could do was to put an alarm on his bed, which no one paid attention to, since so many were going off, so they put pads on the sides of his bed, so if he fell, it would be something cushiony. The waiver from the doctor no longer counted and the govt. insisted for no restraints. If Jim had fallen and broken bones, then they would reconsider the restraints, but something had to happen first. I found out in this group, the no restraint rule is not only in my state, but in most, if not all states. The nursing home got Jim a wheelchair that tilted back and he could not stand up from it. It was not a Geri Chair, but one that could be taken out to go for walks. Though you are not licensed by the state or have inspections by the state at your house, maybe the agency from where your caregivers come do have that rule or because most caregivers in homes also have a second job in a hospital or nursing home, they only know that rule. When Jim did live at home, I had a caregiver half a day, but when he left for home and it was only me with Jim, I did belt him into the wheelchair. Be forewarned that Jim did not want to be strapped into the wheelchair and one day rocked the wheelchair back and forth until he gained momentum and the chair fell over with him in it. Thankfully, he was not hurt, but it was hard to get him up off the floor. I also used the lap buddy http://www.rehabmart.com/product/the-tabletop-hugger-lap-buddy-for-full-length-a\ rms-10791.html It looks like you need a prescription for it now, but not at the time that I used it. It did no good anyway, my husband found a way to remove it everytime. I also used a pommel to keep him from slipping out of the wheelchair. If you are interested in these items you may be able to get hold of them through the group from someone that no longer needs them. http://www.wheelchairnet.org/wcn_prodserv/Docs/TeamRehab/RR_95/9509art1.PDF This is in PDF document: It may be helpful advice for using no restraints if your caregivers will not use them. http://www.wheelchairnet.org/wcn_prodserv/Docs/TeamRehab/RR_95/9509art1.PDF I'm glad that your caregivers are working out for you and you now have some time for you. I too had to use the syringe for Jim to take his medications when he lived at home. I was thankful for the syringe. You are doing a great job, your mil is fortunate to have a dil so involved in her care. Take Care, Jan Colello I have two questions I've run up against recently in caring for my mother in law. 1 - what about restraints? What are regulations about them? My mother in law constantly tries to get out of her wheelchair now and even will try to get out of her bed. She is BARELY ambulatory but she doesn't understand if she gets out of the chair she is on the floor. We have had a trip to the ER already because she wiggled forward enough to fall out of her chair. The ER doc suggested we put a belt around her to keep her from falling out of the chair. One of the caregivers we have helping us tells me she cannot do this because it's a restraint. I want to keep everyone happy and safe. My mother in law is definitely not in her right mind - she is delusional and so on. And if left alone for 30 seconds or more she tries to get up - which makes getting lunch, pills, or having a quick trip to the bathroom very difficult. I am in my own mind very comfortable using a belt to buckle her into her wheelchair so she can't get to the edge and fall out. With her bed I am strapping pillows all around the rails which gives her nothing solid to pull on and keeps her from sliding out under the rails. I would really appreciate knowing if there are laws about this and what can be done? Do I need a doctor's order maybe? 2 - Provigil - has anyone here tried this? I have read a few places people trying it to see if the wakefulness it promotes during daytime will help with nighttime sleeping habits. I have seen some mixed results. Has anyone heard of using this with LBD (even small amounts) and has there been any success? My mil wants to sleep all day and then as soon as it's bedtime her eyes are wide open and she won't sleep but yells all night. We have been dealing with this problem for over a year now, intensely, and have exhausted everything else but maybe trying something to keep her awake during the day time. Personally I doubt it will help but I thought I'd ask and see if it might be worth trying at least. My mil is declining bit by bit but so far we are managing ok without hospice and I'm really glad at this point. The two caregivers that alternate are great and I can carry on normally now without even feeling infringed on at all. I've got two of the rescue dogs adopted so far and working on the other two (they need better manners lol). My mother in law is happy as possible, cared for and we know it's the best that can be done under the circumstances. The last few months we put her to bed, give her meds, say goodnight and close the door - she usually yells and hollers for an hour before sleeping a few hours, or just yells off and on all night. She thinks it's time to get up or thinks she has a stomach ache or thinks something that we have figured out is just not so. That's the hard part. There is just no medication we've found that will help her sleep at night, so this is all we can do - and keep her awake during the day. She is barely able to walk with great assistance now, often doesn't know if she's sitting or standing or lying down. Recently crabby and clamped her jaw refusing meds so I had to syringe them into her mouth and two times of that she hasn't tried it again. Never a dull moment! -Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2011 Report Share Posted September 23, 2011 Let me clarify the first part of this. My mil cannot walk or stand by herself. She can barely move without someone telling her how to move. We " walk " her to the bathroom and shower by holding her up under her arms and walking right behind her, using our legs to move hers even. We carry most all of her weight. We still to exercises with her to the extend she can and she hates them. Unless she has extensive help she cannot walk and she has a hard time holding herself upright in her chair so we are constantly repositioning her to sit straight, etc. Currently the problem is when a person needs to go get pills, water, snack or use the bathroom and there's not another around to watch my mil while this is being done. That means being away for less than 2 minutes. I have been using the gait belt on the wheelchair so that she cannot scoot forward and slide out of the chair, which she does if she is alone. She is looking for someone something or going to meet her husband, etc. Many times she is very delusional about things - I rarely see her in any state of reality anymore. Fastening the extra gait belt on the wheelchair keeps her safe from sliding forward and out of the chair. If she slides out of the chair she is on the floor in some fashion - either straight on the floor or tangled in foot supports or something. I tried a lap tray but it doesn't fit the chair and my mil's stomach which pooches out a lot now. I am looking for something to use only for short amounts of time. It certainly won't prevent her from walking or being independent. She can move a little but mostly she moves involuntarily - she is almost completely unable to move if she wants to or makes a conscious effort to. It's when she thinks her husband (really her son) is coming home - things like that - that she will lean out of her chair and fall to the floor. Thank you Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of dsinouye Sent: Friday, September 23, 2011 2:28 PM To: LBDcaregivers Subject: Two questions I have two questions I've run up against recently in caring for my mother in law. 1 - what about restraints? What are regulations about them? My mother in law constantly tries to get out of her wheelchair now and even will try to get out of her bed. She is BARELY ambulatory but she doesn't understand if she gets out of the chair she is on the floor. We have had a trip to the ER already because she wiggled forward enough to fall out of her chair. The ER doc suggested we put a belt around her to keep her from falling out of the chair. One of the caregivers we have helping us tells me she cannot do this because it's a restraint. I want to keep everyone happy and safe. My mother in law is definitely not in her right mind - she is delusional and so on. And if left alone for 30 seconds or more she tries to get up - which makes getting lunch, pills, or having a quick trip to the bathroom very difficult. I am in my own mind very comfortable using a belt to buckle her into her wheelchair so she can't get to the edge and fall out. With her bed I am strapping pillows all around the rails which gives her nothing solid to pull on and keeps her from sliding out under the rails. I would really appreciate knowing if there are laws about this and what can be done? Do I need a doctor's order maybe? 2 - Provigil - has anyone here tried this? I have read a few places people trying it to see if the wakefulness it promotes during daytime will help with nighttime sleeping habits. I have seen some mixed results. Has anyone heard of using this with LBD (even small amounts) and has there been any success? My mil wants to sleep all day and then as soon as it's bedtime her eyes are wide open and she won't sleep but yells all night. We have been dealing with this problem for over a year now, intensely, and have exhausted everything else but maybe trying something to keep her awake during the day time. Personally I doubt it will help but I thought I'd ask and see if it might be worth trying at least. My mil is declining bit by bit but so far we are managing ok without hospice and I'm really glad at this point. The two caregivers that alternate are great and I can carry on normally now without even feeling infringed on at all. I've got two of the rescue dogs adopted so far and working on the other two (they need better manners lol). My mother in law is happy as possible, cared for and we know it's the best that can be done under the circumstances. The last few months we put her to bed, give her meds, say goodnight and close the door - she usually yells and hollers for an hour before sleeping a few hours, or just yells off and on all night. She thinks it's time to get up or thinks she has a stomach ache or thinks something that we have figured out is just not so. That's the hard part. There is just no medication we've found that will help her sleep at night, so this is all we can do - and keep her awake during the day. She is barely able to walk with great assistance now, often doesn't know if she's sitting or standing or lying down. Recently crabby and clamped her jaw refusing meds so I had to syringe them into her mouth and two times of that she hasn't tried it again. Never a dull moment! -Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2011 Report Share Posted September 23, 2011 Dorothy I feel for you! Forgive me for asking this but Where is your mil's son or yOur husband in all of this ?? Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > Let me clarify the first part of this. My mil cannot walk or stand by > herself. She can barely move without someone telling her how to move. We > " walk " her to the bathroom and shower by holding her up under her arms and > walking right behind her, using our legs to move hers even. We carry most > all of her weight. We still to exercises with her to the extend she can > and she hates them. Unless she has extensive help she cannot walk and she > has a hard time holding herself upright in her chair so we are constantly > repositioning her to sit straight, etc. Currently the problem is when a > person needs to go get pills, water, snack or use the bathroom and there's > not another around to watch my mil while this is being done. That means > being away for less than 2 minutes. I have been using the gait belt on the > wheelchair so that she cannot scoot forward and slide out of the chair, > which she does if she is alone. She is looking for someone something or > going to meet her husband, etc. Many times she is very delusional about > things - I rarely see her in any state of reality anymore. Fastening the > extra gait belt on the wheelchair keeps her safe from sliding forward and > out of the chair. If she slides out of the chair she is on the floor in > some fashion - either straight on the floor or tangled in foot supports or > something. I tried a lap tray but it doesn't fit the chair and my mil's > stomach which pooches out a lot now. I am looking for something to use only > for short amounts of time. It certainly won't prevent her from walking or > being independent. She can move a little but mostly she moves involuntarily > - she is almost completely unable to move if she wants to or makes a > conscious effort to. It's when she thinks her husband (really her son) is > coming home - things like that - that she will lean out of her chair and > fall to the floor. > > Thank you > > Dorothy > > From: LBDcaregivers [mailto:LBDcaregivers ] > On Behalf Of dsinouye > Sent: Friday, September 23, 2011 2:28 PM > To: LBDcaregivers > Subject: Two questions > > I have two questions I've run up against recently in caring for my mother in > law. > > 1 - what about restraints? What are regulations about them? My mother in > law constantly tries to get out of her wheelchair now and even will try to > get out of her bed. She is BARELY ambulatory but she doesn't understand if > she gets out of the chair she is on the floor. We have had a trip to the ER > already because she wiggled forward enough to fall out of her chair. The ER > doc suggested we put a belt around her to keep her from falling out of the > chair. One of the caregivers we have helping us tells me she cannot do this > because it's a restraint. I want to keep everyone happy and safe. My > mother in law is definitely not in her right mind - she is delusional and so > on. And if left alone for 30 seconds or more she tries to get up - which > makes getting lunch, pills, or having a quick trip to the bathroom very > difficult. I am in my own mind very comfortable using a belt to buckle > her into her wheelchair so she can't get to the edge and fall out. With her > bed I am strapping pillows all around the rails which gives her nothing > solid to pull on and keeps her from sliding out under the rails. I would > really appreciate knowing if there are laws about this and what can be done? > Do I need a doctor's order maybe? > > 2 - Provigil - has anyone here tried this? I have read a few places people > trying it to see if the wakefulness it promotes during daytime will help > with nighttime sleeping habits. I have seen some mixed results. Has anyone > heard of using this with LBD (even small amounts) and has there been any > success? My mil wants to sleep all day and then as soon as it's bedtime her > eyes are wide open and she won't sleep but yells all night. We have been > dealing with this problem for over a year now, intensely, and have exhausted > everything else but maybe trying something to keep her awake during the day > time. Personally I doubt it will help but I thought I'd ask and see if it > might be worth trying at least. > > My mil is declining bit by bit but so far we are managing ok without hospice > and I'm really glad at this point. The two caregivers that alternate are > great and I can carry on normally now without even feeling infringed on at > all. I've got two of the rescue dogs adopted so far and working on the > other two (they need better manners lol). My mother in law is happy as > possible, cared for and we know it's the best that can be done under the > circumstances. The last few months we put her to bed, give her meds, say > goodnight and close the door - she usually yells and hollers for an hour > before sleeping a few hours, or just yells off and on all night. She > thinks it's time to get up or thinks she has a stomach ache or thinks > something that we have figured out is just not so. That's the hard part. > There is just no medication we've found that will help her sleep at night, > so this is all we can do - and keep her awake during the day. She is barely > able to walk with great assistance now, often doesn't know if she's sitting > or standing or lying down. Recently crabby and clamped her jaw refusing > meds so I had to syringe them into her mouth and two times of that she > hasn't tried it again. Never a dull moment! > > -Dorothy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2011 Report Share Posted September 23, 2011 He is working 10-12 hours a day. He leaves about 4:30 am and gets home about 6pm but sometimes not until 8pm. As far as keeping her from falling he would like to keep her from falling out of the chair also – especially since he had to do the last ER trip. Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Sent: Friday, September 23, 2011 7:55 PM To: LBDcaregivers Subject: Re: Two questions Dorothy I feel for you! Forgive me for asking this but Where is your mil's son or yOur husband in all of this ?? Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu> On Sep 23, 2011, at 10:51 PM, " dsinouye " <fullcircle@... <mailto:fullcircle%40sonic.net> > wrote: > Let me clarify the first part of this. My mil cannot walk or stand by > herself. She can barely move without someone telling her how to move. We > " walk " her to the bathroom and shower by holding her up under her arms and > walking right behind her, using our legs to move hers even. We carry most > all of her weight. We still to exercises with her to the extend she can > and she hates them. Unless she has extensive help she cannot walk and she > has a hard time holding herself upright in her chair so we are constantly > repositioning her to sit straight, etc. Currently the problem is when a > person needs to go get pills, water, snack or use the bathroom and there's > not another around to watch my mil while this is being done. That means > being away for less than 2 minutes. I have been using the gait belt on the > wheelchair so that she cannot scoot forward and slide out of the chair, > which she does if she is alone. She is looking for someone something or > going to meet her husband, etc. Many times she is very delusional about > things - I rarely see her in any state of reality anymore. Fastening the > extra gait belt on the wheelchair keeps her safe from sliding forward and > out of the chair. If she slides out of the chair she is on the floor in > some fashion - either straight on the floor or tangled in foot supports or > something. I tried a lap tray but it doesn't fit the chair and my mil's > stomach which pooches out a lot now. I am looking for something to use only > for short amounts of time. It certainly won't prevent her from walking or > being independent. She can move a little but mostly she moves involuntarily > - she is almost completely unable to move if she wants to or makes a > conscious effort to. It's when she thinks her husband (really her son) is > coming home - things like that - that she will lean out of her chair and > fall to the floor. > > Thank you > > Dorothy > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ] > On Behalf Of dsinouye > Sent: Friday, September 23, 2011 2:28 PM > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > Subject: Two questions > > I have two questions I've run up against recently in caring for my mother in > law. > > 1 - what about restraints? What are regulations about them? My mother in > law constantly tries to get out of her wheelchair now and even will try to > get out of her bed. She is BARELY ambulatory but she doesn't understand if > she gets out of the chair she is on the floor. We have had a trip to the ER > already because she wiggled forward enough to fall out of her chair. The ER > doc suggested we put a belt around her to keep her from falling out of the > chair. One of the caregivers we have helping us tells me she cannot do this > because it's a restraint. I want to keep everyone happy and safe. My > mother in law is definitely not in her right mind - she is delusional and so > on. And if left alone for 30 seconds or more she tries to get up - which > makes getting lunch, pills, or having a quick trip to the bathroom very > difficult. I am in my own mind very comfortable using a belt to buckle > her into her wheelchair so she can't get to the edge and fall out. With her > bed I am strapping pillows all around the rails which gives her nothing > solid to pull on and keeps her from sliding out under the rails. I would > really appreciate knowing if there are laws about this and what can be done? > Do I need a doctor's order maybe? > > 2 - Provigil - has anyone here tried this? I have read a few places people > trying it to see if the wakefulness it promotes during daytime will help > with nighttime sleeping habits. I have seen some mixed results. Has anyone > heard of using this with LBD (even small amounts) and has there been any > success? My mil wants to sleep all day and then as soon as it's bedtime her > eyes are wide open and she won't sleep but yells all night. We have been > dealing with this problem for over a year now, intensely, and have exhausted > everything else but maybe trying something to keep her awake during the day > time. Personally I doubt it will help but I thought I'd ask and see if it > might be worth trying at least. > > My mil is declining bit by bit but so far we are managing ok without hospice > and I'm really glad at this point. The two caregivers that alternate are > great and I can carry on normally now without even feeling infringed on at > all. I've got two of the rescue dogs adopted so far and working on the > other two (they need better manners lol). My mother in law is happy as > possible, cared for and we know it's the best that can be done under the > circumstances. The last few months we put her to bed, give her meds, say > goodnight and close the door - she usually yells and hollers for an hour > before sleeping a few hours, or just yells off and on all night. She > thinks it's time to get up or thinks she has a stomach ache or thinks > something that we have figured out is just not so. That's the hard part. > There is just no medication we've found that will help her sleep at night, > so this is all we can do - and keep her awake during the day. She is barely > able to walk with great assistance now, often doesn't know if she's sitting > or standing or lying down. Recently crabby and clamped her jaw refusing > meds so I had to syringe them into her mouth and two times of that she > hasn't tried it again. Never a dull moment! > > -Dorothy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2011 Report Share Posted September 23, 2011 Hi Dorothy What a tough situation you are in ! I have to say the obvious - your mil's schedule is cockeyed - with sleeping sleeping during the day and staying up at night ' Is there a way for you to get her hospitalized or in a nursing home fr a few weeks to get properly medicated and treated ?? It sounds like you and your husband need some respite and she needs to be properly worked up psycho-pharmacologically by the best medical team specializing in LBD in your area! I know that finding the right combo of meds is key to your lo's well being as they journey thru this awful disease !! And the reality is that with how out of control she sounds it might take some time and trial runs of various Meds to stabilize her! God bless you for the care you r giving your mil - but it sure sounds like you need some care too! There are way too Many caregivers who fall ill themselves from not getting sleep and running themselves ragged - I am glad you have the group to turn to! Where do you live ?? Maybe someone in the group Can recommend a good medical doctor to you? Keep us posted and hang in there ! Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > He is working 10-12 hours a day. He leaves about 4:30 am and gets home about 6pm but sometimes not until 8pm. As far as keeping her from falling he would like to keep her from falling out of the chair also – especially since he had to do the last ER trip. > > Dorothy > > From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy > Sent: Friday, September 23, 2011 7:55 PM > To: LBDcaregivers > Subject: Re: Two questions > > Dorothy > > I feel for you! Forgive me for asking this but Where is your mil's son or yOur husband in all of this ?? > > Judy R. Strauss LMSW PhD > > Lead Faculty > University of Phoenix > > Jersey City Campus > 100 Town Square Place > |Jersey City, NJ 07310 > Cell- > Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu> > > On Sep 23, 2011, at 10:51 PM, " dsinouye " <fullcircle@... <mailto:fullcircle%40sonic.net> > wrote: > > > Let me clarify the first part of this. My mil cannot walk or stand by > > herself. She can barely move without someone telling her how to move. We > > " walk " her to the bathroom and shower by holding her up under her arms and > > walking right behind her, using our legs to move hers even. We carry most > > all of her weight. We still to exercises with her to the extend she can > > and she hates them. Unless she has extensive help she cannot walk and she > > has a hard time holding herself upright in her chair so we are constantly > > repositioning her to sit straight, etc. Currently the problem is when a > > person needs to go get pills, water, snack or use the bathroom and there's > > not another around to watch my mil while this is being done. That means > > being away for less than 2 minutes. I have been using the gait belt on the > > wheelchair so that she cannot scoot forward and slide out of the chair, > > which she does if she is alone. She is looking for someone something or > > going to meet her husband, etc. Many times she is very delusional about > > things - I rarely see her in any state of reality anymore. Fastening the > > extra gait belt on the wheelchair keeps her safe from sliding forward and > > out of the chair. If she slides out of the chair she is on the floor in > > some fashion - either straight on the floor or tangled in foot supports or > > something. I tried a lap tray but it doesn't fit the chair and my mil's > > stomach which pooches out a lot now. I am looking for something to use only > > for short amounts of time. It certainly won't prevent her from walking or > > being independent. She can move a little but mostly she moves involuntarily > > - she is almost completely unable to move if she wants to or makes a > > conscious effort to. It's when she thinks her husband (really her son) is > > coming home - things like that - that she will lean out of her chair and > > fall to the floor. > > > > Thank you > > > > Dorothy > > > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ] > > On Behalf Of dsinouye > > Sent: Friday, September 23, 2011 2:28 PM > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > Subject: Two questions > > > > I have two questions I've run up against recently in caring for my mother in > > law. > > > > 1 - what about restraints? What are regulations about them? My mother in > > law constantly tries to get out of her wheelchair now and even will try to > > get out of her bed. She is BARELY ambulatory but she doesn't understand if > > she gets out of the chair she is on the floor. We have had a trip to the ER > > already because she wiggled forward enough to fall out of her chair. The ER > > doc suggested we put a belt around her to keep her from falling out of the > > chair. One of the caregivers we have helping us tells me she cannot do this > > because it's a restraint. I want to keep everyone happy and safe. My > > mother in law is definitely not in her right mind - she is delusional and so > > on. And if left alone for 30 seconds or more she tries to get up - which > > makes getting lunch, pills, or having a quick trip to the bathroom very > > difficult. I am in my own mind very comfortable using a belt to buckle > > her into her wheelchair so she can't get to the edge and fall out. With her > > bed I am strapping pillows all around the rails which gives her nothing > > solid to pull on and keeps her from sliding out under the rails. I would > > really appreciate knowing if there are laws about this and what can be done? > > Do I need a doctor's order maybe? > > > > 2 - Provigil - has anyone here tried this? I have read a few places people > > trying it to see if the wakefulness it promotes during daytime will help > > with nighttime sleeping habits. I have seen some mixed results. Has anyone > > heard of using this with LBD (even small amounts) and has there been any > > success? My mil wants to sleep all day and then as soon as it's bedtime her > > eyes are wide open and she won't sleep but yells all night. We have been > > dealing with this problem for over a year now, intensely, and have exhausted > > everything else but maybe trying something to keep her awake during the day > > time. Personally I doubt it will help but I thought I'd ask and see if it > > might be worth trying at least. > > > > My mil is declining bit by bit but so far we are managing ok without hospice > > and I'm really glad at this point. The two caregivers that alternate are > > great and I can carry on normally now without even feeling infringed on at > > all. I've got two of the rescue dogs adopted so far and working on the > > other two (they need better manners lol). My mother in law is happy as > > possible, cared for and we know it's the best that can be done under the > > circumstances. The last few months we put her to bed, give her meds, say > > goodnight and close the door - she usually yells and hollers for an hour > > before sleeping a few hours, or just yells off and on all night. She > > thinks it's time to get up or thinks she has a stomach ache or thinks > > something that we have figured out is just not so. That's the hard part. > > There is just no medication we've found that will help her sleep at night, > > so this is all we can do - and keep her awake during the day. She is barely > > able to walk with great assistance now, often doesn't know if she's sitting > > or standing or lying down. Recently crabby and clamped her jaw refusing > > meds so I had to syringe them into her mouth and two times of that she > > hasn't tried it again. Never a dull moment! > > > > -Dorothy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2011 Report Share Posted September 23, 2011 Hi Judy, We have an excellent medical team. My mil is very sensitive medications. The choices we have are we either have her somewhat coherent with some smiles and singing sometimes or we can have her in a near coma state or agitated or delirious. She sees a team at the memory and aging clinic at UCSF. From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Sent: Friday, September 23, 2011 9:00 PM To: LBDcaregivers Subject: Re: Two questions Hi Dorothy What a tough situation you are in ! I have to say the obvious - your mil's schedule is cockeyed - with sleeping sleeping during the day and staying up at night ' Is there a way for you to get her hospitalized or in a nursing home fr a few weeks to get properly medicated and treated ?? It sounds like you and your husband need some respite and she needs to be properly worked up psycho-pharmacologically by the best medical team specializing in LBD in your area! I know that finding the right combo of meds is key to your lo's well being as they journey thru this awful disease !! And the reality is that with how out of control she sounds it might take some time and trial runs of various Meds to stabilize her! God bless you for the care you r giving your mil - but it sure sounds like you need some care too! There are way too Many caregivers who fall ill themselves from not getting sleep and running themselves ragged - I am glad you have the group to turn to! Where do you live ?? Maybe someone in the group Can recommend a good medical doctor to you? Keep us posted and hang in there ! Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu> On Sep 23, 2011, at 11:09 PM, " dsinouye " <fullcircle@... <mailto:fullcircle%40sonic.net> > wrote: > He is working 10-12 hours a day. He leaves about 4:30 am and gets home about 6pm but sometimes not until 8pm. As far as keeping her from falling he would like to keep her from falling out of the chair also – especially since he had to do the last ER trip. > > Dorothy > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Judy > Sent: Friday, September 23, 2011 7:55 PM > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > Subject: Re: Two questions > > Dorothy > > I feel for you! Forgive me for asking this but Where is your mil's son or yOur husband in all of this ?? > > Judy R. Strauss LMSW PhD > > Lead Faculty > University of Phoenix > > Jersey City Campus > 100 Town Square Place > |Jersey City, NJ 07310 > Cell- > Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu> <mailto:Jrstr%40email.Phoenix.edu> > > On Sep 23, 2011, at 10:51 PM, " dsinouye " <fullcircle@... <mailto:fullcircle%40sonic.net> <mailto:fullcircle%40sonic.net> > wrote: > > > Let me clarify the first part of this. My mil cannot walk or stand by > > herself. She can barely move without someone telling her how to move. We > > " walk " her to the bathroom and shower by holding her up under her arms and > > walking right behind her, using our legs to move hers even. We carry most > > all of her weight. We still to exercises with her to the extend she can > > and she hates them. Unless she has extensive help she cannot walk and she > > has a hard time holding herself upright in her chair so we are constantly > > repositioning her to sit straight, etc. Currently the problem is when a > > person needs to go get pills, water, snack or use the bathroom and there's > > not another around to watch my mil while this is being done. That means > > being away for less than 2 minutes. I have been using the gait belt on the > > wheelchair so that she cannot scoot forward and slide out of the chair, > > which she does if she is alone. She is looking for someone something or > > going to meet her husband, etc. Many times she is very delusional about > > things - I rarely see her in any state of reality anymore. Fastening the > > extra gait belt on the wheelchair keeps her safe from sliding forward and > > out of the chair. If she slides out of the chair she is on the floor in > > some fashion - either straight on the floor or tangled in foot supports or > > something. I tried a lap tray but it doesn't fit the chair and my mil's > > stomach which pooches out a lot now. I am looking for something to use only > > for short amounts of time. It certainly won't prevent her from walking or > > being independent. She can move a little but mostly she moves involuntarily > > - she is almost completely unable to move if she wants to or makes a > > conscious effort to. It's when she thinks her husband (really her son) is > > coming home - things like that - that she will lean out of her chair and > > fall to the floor. > > > > Thank you > > > > Dorothy > > > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> ] > > On Behalf Of dsinouye > > Sent: Friday, September 23, 2011 2:28 PM > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> > > Subject: Two questions > > > > I have two questions I've run up against recently in caring for my mother in > > law. > > > > 1 - what about restraints? What are regulations about them? My mother in > > law constantly tries to get out of her wheelchair now and even will try to > > get out of her bed. She is BARELY ambulatory but she doesn't understand if > > she gets out of the chair she is on the floor. We have had a trip to the ER > > already because she wiggled forward enough to fall out of her chair. The ER > > doc suggested we put a belt around her to keep her from falling out of the > > chair. One of the caregivers we have helping us tells me she cannot do this > > because it's a restraint. I want to keep everyone happy and safe. My > > mother in law is definitely not in her right mind - she is delusional and so > > on. And if left alone for 30 seconds or more she tries to get up - which > > makes getting lunch, pills, or having a quick trip to the bathroom very > > difficult. I am in my own mind very comfortable using a belt to buckle > > her into her wheelchair so she can't get to the edge and fall out. With her > > bed I am strapping pillows all around the rails which gives her nothing > > solid to pull on and keeps her from sliding out under the rails. I would > > really appreciate knowing if there are laws about this and what can be done? > > Do I need a doctor's order maybe? > > > > 2 - Provigil - has anyone here tried this? I have read a few places people > > trying it to see if the wakefulness it promotes during daytime will help > > with nighttime sleeping habits. I have seen some mixed results. Has anyone > > heard of using this with LBD (even small amounts) and has there been any > > success? My mil wants to sleep all day and then as soon as it's bedtime her > > eyes are wide open and she won't sleep but yells all night. We have been > > dealing with this problem for over a year now, intensely, and have exhausted > > everything else but maybe trying something to keep her awake during the day > > time. Personally I doubt it will help but I thought I'd ask and see if it > > might be worth trying at least. > > > > My mil is declining bit by bit but so far we are managing ok without hospice > > and I'm really glad at this point. The two caregivers that alternate are > > great and I can carry on normally now without even feeling infringed on at > > all. I've got two of the rescue dogs adopted so far and working on the > > other two (they need better manners lol). My mother in law is happy as > > possible, cared for and we know it's the best that can be done under the > > circumstances. The last few months we put her to bed, give her meds, say > > goodnight and close the door - she usually yells and hollers for an hour > > before sleeping a few hours, or just yells off and on all night. She > > thinks it's time to get up or thinks she has a stomach ache or thinks > > something that we have figured out is just not so. That's the hard part. > > There is just no medication we've found that will help her sleep at night, > > so this is all we can do - and keep her awake during the day. She is barely > > able to walk with great assistance now, often doesn't know if she's sitting > > or standing or lying down. Recently crabby and clamped her jaw refusing > > meds so I had to syringe them into her mouth and two times of that she > > hasn't tried it again. Never a dull moment! > > > > -Dorothy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2011 Report Share Posted September 23, 2011 Dorothy, UCSF is very good in the memory dept. They are very aware of LBD. My husband willed his remains to UCSF way before LBD existed and when he was in good health. I am also in the S.F. Bay Area. I lived in the East Bay in Lafayette for many years, but recently moved to Castro Valley after my husband died. To: LBDcaregivers Sent: Friday, September 23, 2011 9:27 PM Subject: RE: Two questions Hi Judy, We have an excellent medical team. My mil is very sensitive medications. The choices we have are we either have her somewhat coherent with some smiles and singing sometimes or we can have her in a near coma state or agitated or delirious. She sees a team at the memory and aging clinic at UCSF. From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Sent: Friday, September 23, 2011 9:00 PM To: LBDcaregivers Subject: Re: Two questions  Hi Dorothy What a tough situation you are in ! I have to say the obvious - your mil's schedule is cockeyed - with sleeping sleeping during the day and staying up at night ' Is there a way for you to get her hospitalized or in a nursing home fr a few weeks to get properly medicated and treated ?? It sounds like you and your husband need some respite and she needs to be properly worked up psycho-pharmacologically by the best medical team specializing in LBD in your area! I know that finding the right combo of meds is key to your lo's well being as they journey thru this awful disease !! And the reality is that with how out of control she sounds it might take some time and trial runs of various Meds to stabilize her! God bless you for the care you r giving your mil - but it sure sounds like you need some care too! There are way too Many caregivers who fall ill themselves from not getting sleep and running themselves ragged - I am glad you have the group to turn to! Where do you live ?? Maybe someone in the group Can recommend a good medical doctor to you? Keep us posted and hang in there ! Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu> On Sep 23, 2011, at 11:09 PM, " dsinouye " <fullcircle@... <mailto:fullcircle%40sonic.net> > wrote: > He is working 10-12 hours a day. He leaves about 4:30 am and gets home about 6pm but sometimes not until 8pm. As far as keeping her from falling he would like to keep her from falling out of the chair also – especially since he had to do the last ER trip. > > Dorothy > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Judy > Sent: Friday, September 23, 2011 7:55 PM > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > Subject: Re: Two questions > > Dorothy > > I feel for you! Forgive me for asking this but Where is your mil's son or yOur husband in all of this ?? > > Judy R. Strauss LMSW PhD > > Lead Faculty > University of Phoenix > > Jersey City Campus > 100 Town Square Place > |Jersey City, NJ 07310 > Cell- > Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu> <mailto:Jrstr%40email.Phoenix.edu> > > On Sep 23, 2011, at 10:51 PM, " dsinouye " <fullcircle@... <mailto:fullcircle%40sonic.net> <mailto:fullcircle%40sonic.net> > wrote: > > > Let me clarify the first part of this. My mil cannot walk or stand by > > herself. She can barely move without someone telling her how to move. We > > " walk " her to the bathroom and shower by holding her up under her arms and > > walking right behind her, using our legs to move hers even. We carry most > > all of her weight. We still to exercises with her to the extend she can > > and she hates them. Unless she has extensive help she cannot walk and she > > has a hard time holding herself upright in her chair so we are constantly > > repositioning her to sit straight, etc. Currently the problem is when a > > person needs to go get pills, water, snack or use the bathroom and there's > > not another around to watch my mil while this is being done. That means > > being away for less than 2 minutes. I have been using the gait belt on the > > wheelchair so that she cannot scoot forward and slide out of the chair, > > which she does if she is alone. She is looking for someone something or > > going to meet her husband, etc. Many times she is very delusional about > > things - I rarely see her in any state of reality anymore. Fastening the > > extra gait belt on the wheelchair keeps her safe from sliding forward and > > out of the chair. If she slides out of the chair she is on the floor in > > some fashion - either straight on the floor or tangled in foot supports or > > something. I tried a lap tray but it doesn't fit the chair and my mil's > > stomach which pooches out a lot now. I am looking for something to use only > > for short amounts of time. It certainly won't prevent her from walking or > > being independent. She can move a little but mostly she moves involuntarily > > - she is almost completely unable to move if she wants to or makes a > > conscious effort to. It's when she thinks her husband (really her son) is > > coming home - things like that - that she will lean out of her chair and > > fall to the floor. > > > > Thank you > > > > Dorothy > > > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> ] > > On Behalf Of dsinouye > > Sent: Friday, September 23, 2011 2:28 PM > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> > > Subject: Two questions > > > > I have two questions I've run up against recently in caring for my mother in > > law. > > > > 1 - what about restraints? What are regulations about them? My mother in > > law constantly tries to get out of her wheelchair now and even will try to > > get out of her bed. She is BARELY ambulatory but she doesn't understand if > > she gets out of the chair she is on the floor. We have had a trip to the ER > > already because she wiggled forward enough to fall out of her chair. The ER > > doc suggested we put a belt around her to keep her from falling out of the > > chair. One of the caregivers we have helping us tells me she cannot do this > > because it's a restraint. I want to keep everyone happy and safe. My > > mother in law is definitely not in her right mind - she is delusional and so > > on. And if left alone for 30 seconds or more she tries to get up - which > > makes getting lunch, pills, or having a quick trip to the bathroom very > > difficult. I am in my own mind very comfortable using a belt to buckle > > her into her wheelchair so she can't get to the edge and fall out. With her > > bed I am strapping pillows all around the rails which gives her nothing > > solid to pull on and keeps her from sliding out under the rails. I would > > really appreciate knowing if there are laws about this and what can be done? > > Do I need a doctor's order maybe? > > > > 2 - Provigil - has anyone here tried this? I have read a few places people > > trying it to see if the wakefulness it promotes during daytime will help > > with nighttime sleeping habits. I have seen some mixed results. Has anyone > > heard of using this with LBD (even small amounts) and has there been any > > success? My mil wants to sleep all day and then as soon as it's bedtime her > > eyes are wide open and she won't sleep but yells all night. We have been > > dealing with this problem for over a year now, intensely, and have exhausted > > everything else but maybe trying something to keep her awake during the day > > time. Personally I doubt it will help but I thought I'd ask and see if it > > might be worth trying at least. > > > > My mil is declining bit by bit but so far we are managing ok without hospice > > and I'm really glad at this point. The two caregivers that alternate are > > great and I can carry on normally now without even feeling infringed on at > > all. I've got two of the rescue dogs adopted so far and working on the > > other two (they need better manners lol). My mother in law is happy as > > possible, cared for and we know it's the best that can be done under the > > circumstances. The last few months we put her to bed, give her meds, say > > goodnight and close the door - she usually yells and hollers for an hour > > before sleeping a few hours, or just yells off and on all night. She > > thinks it's time to get up or thinks she has a stomach ache or thinks > > something that we have figured out is just not so. That's the hard part. > > There is just no medication we've found that will help her sleep at night, > > so this is all we can do - and keep her awake during the day. She is barely > > able to walk with great assistance now, often doesn't know if she's sitting > > or standing or lying down. Recently crabby and clamped her jaw refusing > > meds so I had to syringe them into her mouth and two times of that she > > hasn't tried it again. Never a dull moment! > > > > -Dorothy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2011 Report Share Posted September 23, 2011 I really like Dr. and the others there Janet. I can call them with questions even. They have been so helpful with all this. We are handling the all night yelling better these days. I amazed she can keep it up for 4-6 nights in a row even though we keep her awake all day. The doctor tells us very often people with brain damage have a hard time sleeping. Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Janet Colello Sent: Friday, September 23, 2011 9:35 PM To: LBDcaregivers Subject: Re: Two questions Dorothy, UCSF is very good in the memory dept. They are very aware of LBD. My husband willed his remains to UCSF way before LBD existed and when he was in good health. I am also in the S.F. Bay Area. I lived in the East Bay in Lafayette for many years, but recently moved to Castro Valley after my husband died. From: dsinouye <fullcircle@... <mailto:fullcircle%40sonic.net> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> Sent: Friday, September 23, 2011 9:27 PM Subject: RE: Two questions Hi Judy, We have an excellent medical team. My mil is very sensitive medications. The choices we have are we either have her somewhat coherent with some smiles and singing sometimes or we can have her in a near coma state or agitated or delirious. She sees a team at the memory and aging clinic at UCSF. From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Judy Sent: Friday, September 23, 2011 9:00 PM To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> Subject: Re: Two questions Hi Dorothy What a tough situation you are in ! I have to say the obvious - your mil's schedule is cockeyed - with sleeping sleeping during the day and staying up at night ' Is there a way for you to get her hospitalized or in a nursing home fr a few weeks to get properly medicated and treated ?? It sounds like you and your husband need some respite and she needs to be properly worked up psycho-pharmacologically by the best medical team specializing in LBD in your area! I know that finding the right combo of meds is key to your lo's well being as they journey thru this awful disease !! And the reality is that with how out of control she sounds it might take some time and trial runs of various Meds to stabilize her! God bless you for the care you r giving your mil - but it sure sounds like you need some care too! There are way too Many caregivers who fall ill themselves from not getting sleep and running themselves ragged - I am glad you have the group to turn to! Where do you live ?? Maybe someone in the group Can recommend a good medical doctor to you? Keep us posted and hang in there ! Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu> <mailto:Jrstr%40email.Phoenix.edu> On Sep 23, 2011, at 11:09 PM, " dsinouye " <fullcircle@... <mailto:fullcircle%40sonic.net> <mailto:fullcircle%40sonic.net> > wrote: > He is working 10-12 hours a day. He leaves about 4:30 am and gets home about 6pm but sometimes not until 8pm. As far as keeping her from falling he would like to keep her from falling out of the chair also – especially since he had to do the last ER trip. > > Dorothy > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Judy > Sent: Friday, September 23, 2011 7:55 PM > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> > Subject: Re: Two questions > > Dorothy > > I feel for you! Forgive me for asking this but Where is your mil's son or yOur husband in all of this ?? > > Judy R. Strauss LMSW PhD > > Lead Faculty > University of Phoenix > > Jersey City Campus > 100 Town Square Place > |Jersey City, NJ 07310 > Cell- > Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu> <mailto:Jrstr%40email.Phoenix.edu> <mailto:Jrstr%40email.Phoenix.edu> > > On Sep 23, 2011, at 10:51 PM, " dsinouye " <fullcircle@... <mailto:fullcircle%40sonic.net> <mailto:fullcircle%40sonic.net> <mailto:fullcircle%40sonic.net> > wrote: > > > Let me clarify the first part of this. My mil cannot walk or stand by > > herself. She can barely move without someone telling her how to move. We > > " walk " her to the bathroom and shower by holding her up under her arms and > > walking right behind her, using our legs to move hers even. We carry most > > all of her weight. We still to exercises with her to the extend she can > > and she hates them. Unless she has extensive help she cannot walk and she > > has a hard time holding herself upright in her chair so we are constantly > > repositioning her to sit straight, etc. Currently the problem is when a > > person needs to go get pills, water, snack or use the bathroom and there's > > not another around to watch my mil while this is being done. That means > > being away for less than 2 minutes. I have been using the gait belt on the > > wheelchair so that she cannot scoot forward and slide out of the chair, > > which she does if she is alone. She is looking for someone something or > > going to meet her husband, etc. Many times she is very delusional about > > things - I rarely see her in any state of reality anymore. Fastening the > > extra gait belt on the wheelchair keeps her safe from sliding forward and > > out of the chair. If she slides out of the chair she is on the floor in > > some fashion - either straight on the floor or tangled in foot supports or > > something. I tried a lap tray but it doesn't fit the chair and my mil's > > stomach which pooches out a lot now. I am looking for something to use only > > for short amounts of time. It certainly won't prevent her from walking or > > being independent. She can move a little but mostly she moves involuntarily > > - she is almost completely unable to move if she wants to or makes a > > conscious effort to. It's when she thinks her husband (really her son) is > > coming home - things like that - that she will lean out of her chair and > > fall to the floor. > > > > Thank you > > > > Dorothy > > > > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> ] > > On Behalf Of dsinouye > > Sent: Friday, September 23, 2011 2:28 PM > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> <mailto:LBDcaregivers%40yahoogroups.com> > > Subject: Two questions > > > > I have two questions I've run up against recently in caring for my mother in > > law. > > > > 1 - what about restraints? What are regulations about them? My mother in > > law constantly tries to get out of her wheelchair now and even will try to > > get out of her bed. She is BARELY ambulatory but she doesn't understand if > > she gets out of the chair she is on the floor. We have had a trip to the ER > > already because she wiggled forward enough to fall out of her chair. The ER > > doc suggested we put a belt around her to keep her from falling out of the > > chair. One of the caregivers we have helping us tells me she cannot do this > > because it's a restraint. I want to keep everyone happy and safe. My > > mother in law is definitely not in her right mind - she is delusional and so > > on. And if left alone for 30 seconds or more she tries to get up - which > > makes getting lunch, pills, or having a quick trip to the bathroom very > > difficult. I am in my own mind very comfortable using a belt to buckle > > her into her wheelchair so she can't get to the edge and fall out. With her > > bed I am strapping pillows all around the rails which gives her nothing > > solid to pull on and keeps her from sliding out under the rails. I would > > really appreciate knowing if there are laws about this and what can be done? > > Do I need a doctor's order maybe? > > > > 2 - Provigil - has anyone here tried this? I have read a few places people > > trying it to see if the wakefulness it promotes during daytime will help > > with nighttime sleeping habits. I have seen some mixed results. Has anyone > > heard of using this with LBD (even small amounts) and has there been any > > success? My mil wants to sleep all day and then as soon as it's bedtime her > > eyes are wide open and she won't sleep but yells all night. We have been > > dealing with this problem for over a year now, intensely, and have exhausted > > everything else but maybe trying something to keep her awake during the day > > time. Personally I doubt it will help but I thought I'd ask and see if it > > might be worth trying at least. > > > > My mil is declining bit by bit but so far we are managing ok without hospice > > and I'm really glad at this point. The two caregivers that alternate are > > great and I can carry on normally now without even feeling infringed on at > > all. I've got two of the rescue dogs adopted so far and working on the > > other two (they need better manners lol). My mother in law is happy as > > possible, cared for and we know it's the best that can be done under the > > circumstances. The last few months we put her to bed, give her meds, say > > goodnight and close the door - she usually yells and hollers for an hour > > before sleeping a few hours, or just yells off and on all night. She > > thinks it's time to get up or thinks she has a stomach ache or thinks > > something that we have figured out is just not so. That's the hard part. > > There is just no medication we've found that will help her sleep at night, > > so this is all we can do - and keep her awake during the day. She is barely > > able to walk with great assistance now, often doesn't know if she's sitting > > or standing or lying down. Recently crabby and clamped her jaw refusing > > meds so I had to syringe them into her mouth and two times of that she > > hasn't tried it again. Never a dull moment! > > > > -Dorothy > > > > Quote Link to comment Share on other sites More sharing options...
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