Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Dena, Another good suggestion from Donna R. I was at that frustrating point too with my Uncle....taking him to the doctor's every week and getting more frustrated. Then I called Hospice and someone comes to the house 5 times a week...they can come more often if I choose. They bathe my Unc and take his vitals, change his dressing on his bed sore, provide meds, oxygen and anything to make him comfortable. I'm sure your mom would qualify. Call then tomorrow! They will even help you out with the decision about whether or not your mom needs to go to an NH! Share the responsibility with them. I forgot what part of CA you are in. Let me know again if it's Southern, CA and I will get you some numbers. You need them NOW! Good luck and Peace, Stevie * * * * * * * * * * Dena, Start with Hospice care. Call them in and let them help you with the decision. It will cost you nothing. If you decide to go on Hospice, they can bring in an air bed of some sort I heard about that will help with the sores. They can also help some of the day time hours. Please do that, even if they help you get her into a facility. I know how difficult it is to decide that. And I also know how hard it is to say " I have had enough. " You must make the decision that is best for you. And no one can help with that. If I had had a choice, I would have kept Mom at home. But the money or the wheel chair access I didn't have. And I was to tired. The nh is no good answer. They will do things different than you do. And I had a real hard time. I thought a nh took " care " and they did in an institutional kind of way. And Mom did better on the real schedule that they provided. But she did worse in other ways. So I had to be there anyway or get someone there. They will tell you how many patients they have per patient and it is never enough for me. Hope this helps you think it through in your tiredness and frustration. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Bed Sores Hi Everyone I am feeling so frustrated right now. We just returned from the Dr. My Mom has yet another bed sore. She has them on her ears, butt, heals, the bone that sticks out of her ankle and now the back of her calf. I can do nothing right!! I am just so frustrated and feel like crying. I try to turn her and put neosporin on the wounds constantly. Like every time she goes to the bathroom, but they bleed and then stop, then bleed and then stop. It is the a merry-go-round effect. Now the Dr has prescribed 1% silver sulfadiazine cream to help with healing process and has referred us to wound care. I have used an egg crate and booties for her wounds and I just feel like I am fighting a uphill battle every day. Is is time to place her in a residential care or facility that can care for her better? I know that the time is drawing close. She cannot stand alone and cannot sit without help. She is not bedridden yet, but almost. She walks about 10 feet from bathroom to bedroom a day. Then the rest of the time I use the wheelchair to transport her from living room to bathroom. She wears a diaper and cannot fed herself. I do just about everything for her now. So my question is this. Is it time to place her or do I just keep up trying to do the best I can? How do you know when it is time? I am waiting for a sign from God. I have had many signs, but I think that I am the one hanging on here and not her. I feel like I am throwing in the towel and quitting if I place her in a facility too soon. So since she is still walking I have waited. I do not want a accident to be the reason that I have placed her. Everyday I pray and pray that I do not drop her. It is so hard to get a person who is dead weight to a standing position when you are just one person. Do I hire someone for 8 hours a day at $17 an hour to help me? Or do I place her in a home? If anyone has an answer out there please pass it along. Dena in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Dena, Do you belong to the Kaiser Hospital out by Yorba ? If so, that is Orange County and you can call Hospice Care of California at . They have an office in Placentia, Santa Fe Springs and Laguna Woods. They will come to you or recommend someone in your area. is the Director. Tell her Stevie said to call. Good Luck....Stevie * * * * * * * * Hi Donna How do I call me Hospice? The doctor who saw her in November told me she did not qualify, yet. Can I call them in on my own? We have Kaiser Insurance her Southern California. She does not qualify for Medical either. You know it is better to be poor or very rich when you get to this situation. She is in between that. Thanks for your input. If I can call Hospice I will try to do so tomorrow. Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Dena, Start with Hospice care. Call them in and let them help you with the decision. It will cost you nothing. If you decide to go on Hospice, they can bring in an air bed of some sort I heard about that will help with the sores. They can also help some of the day time hours. Please do that, even if they help you get her into a facility. I know how difficult it is to decide that. And I also know how hard it is to say " I have had enough. " You must make the decision that is best for you. And no one can help with that. If I had had a choice, I would have kept Mom at home. But the money or the wheel chair access I didn't have. And I was to tired. The nh is no good answer. They will do things different than you do. And I had a real hard time. I thought a nh took " care " and they did in an institutional kind of way. And Mom did better on the real schedule that they provided. But she did worse in other ways. So I had to be there anyway or get someone there. They will tell you how many patients they have per patient and it is never enough for me. Hope this helps you think it through in your tiredness and frustration. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Bed Sores Hi Everyone I am feeling so frustrated right now. We just returned from the Dr. My Mom has yet another bed sore. She has them on her ears, butt, heals, the bone that sticks out of her ankle and now the back of her calf. I can do nothing right!! I am just so frustrated and feel like crying. I try to turn her and put neosporin on the wounds constantly. Like every time she goes to the bathroom, but they bleed and then stop, then bleed and then stop. It is the a merry-go-round effect. Now the Dr has prescribed 1% silver sulfadiazine cream to help with healing process and has referred us to wound care. I have used an egg crate and booties for her wounds and I just feel like I am fighting a uphill battle every day. Is is time to place her in a residential care or facility that can care for her better? I know that the time is drawing close. She cannot stand alone and cannot sit without help. She is not bedridden yet, but almost. She walks about 10 feet from bathroom to bedroom a day. Then the rest of the time I use the wheelchair to transport her from living room to bathroom. She wears a diaper and cannot fed herself. I do just about everything for her now. So my question is this. Is it time to place her or do I just keep up trying to do the best I can? How do you know when it is time? I am waiting for a sign from God. I have had many signs, but I think that I am the one hanging on here and not her. I feel like I am throwing in the towel and quitting if I place her in a facility too soon. So since she is still walking I have waited. I do not want a accident to be the reason that I have placed her. Everyday I pray and pray that I do not drop her. It is so hard to get a person who is dead weight to a standing position when you are just one person. Do I hire someone for 8 hours a day at $17 an hour to help me? Or do I place her in a home? If anyone has an answer out there please pass it along. Dena in CA __________________________________________ Yahoo! DSL Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Hi Dena, My prayers and heart go out to you. My Mom is not at that stage yet, but I know it is coming. Making that final decision about placement is always difficult. I can speak however, from both sides on this subject. I am new to this LBDers support group but not the care of the elderly. I have a Mom with LBD and I am also a nursing home administrator of a quality skilled nursing facility in IL. Don't despair. There are very good nursing homes out there that will take excellent care of your Mom. It won't be as you would provide of course, but good care all the same. I know that I will be facing placement for my Mom in the future. I have heart pains over it but know that when the time comes it will be for the best for all of us. There comes a time when home care is not the best option for the LO or the family. And 24 hour home care costs much more than a nursing facility. I think calling hospice is an excellent first step. They call help you with care at home or with nursing home placement. It sounds like your Mom definitely needs an air bed. Eggcrates are not the way to go. They harbor bacteria and breed infections. Once bed sores start they are difficult to heal and it takes a long time for them to heal. You definitely need some professional help. If you want to check out facilities in your area you can do so online on the Medicare website. Go to nursing home compare and you can find info on the latest state surveys for the homes in your area and how well they provide care. They also have info on how to select a good nursing home. I hope this helps. Please don't blame yourself. It sounds like you have done a wonderful job for your Mom. It is not your fault she has reached this stage. It is this terrible disease which has stricken both of our Mothers. Hugs, Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Stevie I am in Southern California in Colton which is inbetween Riverside and San Bernardino. And in Nov when we saw the Geriatric Doctor at Kaiser he told me she did not qualify for hospice yet. I do not know what qualifications they need. Death? Sorry to be sarcastic. I guess it is just my mood. --- juperant@... wrote: > Dena, > > Another good suggestion from Donna R. I was at that > frustrating point too > with my Uncle....taking him to the doctor's every > week and getting more > frustrated. Then I called Hospice and someone comes > to the house 5 times a > week...they can come more often if I choose. They > bathe my Unc and take his vitals, > change his dressing on his bed sore, provide meds, > oxygen and anything to make > him comfortable. I'm sure your mom would qualify. > Call then tomorrow! They > will even help you out with the decision about > whether or not your mom needs to > go to an NH! Share the responsibility with them. > > I forgot what part of CA you are in. Let me know > again if it's Southern, CA > and I will get you some numbers. You need them NOW! > > Good luck and Peace, Stevie > > * * * * * * * * * * > Dena, > > Start with Hospice care. Call them in and let them > help you with the > decision. It will cost you nothing. If you decide > to go on Hospice, they can bring > in an air bed of some sort I heard about that will > help with the sores. They > can also help some of the day time hours. > > Please do that, even if they help you get her into a > facility. I know how > difficult it is to decide that. And I also know how > hard it is to say " I have > had enough. " You must make the decision that is > best for you. And no one can > help with that. If I had had a choice, I would have > kept Mom at home. But > the money or the wheel chair access I didn't have. > And I was to tired. > > The nh is no good answer. They will do things > different than you do. And I > had a real hard time. I thought a nh took " care " > and they did in an > institutional kind of way. And Mom did better on > the real schedule that they provided. > But she did worse in other ways. So I had to be > there anyway or get someone > there. They will tell you how many patients they > have per patient and it is > never enough for me. > > Hope this helps you think it through in your > tiredness and frustration. > > Donna R > > Do you want to read more about Lewy Body? You can > also read the Thistle, the > LBD Newsletter. Just click on: > > http://www.lewybodydementia.org > > > Bed Sores > > Hi Everyone > > I am feeling so frustrated right now. We just > returned > from the Dr. My Mom has yet another bed sore. She > has > them on her ears, butt, heals, the bone that sticks > out of her ankle and now the back of her calf. I can > do nothing right!! I am just so frustrated and feel > like crying. I try to turn her and put neosporin on > the wounds constantly. Like every time she goes to > the > bathroom, but they bleed and then stop, then bleed > and > then stop. It is the a merry-go-round effect. Now > the > Dr has prescribed 1% silver sulfadiazine cream to > help > with healing process and has referred us to wound > care. I have used an egg crate and booties for her > wounds and I just feel like I am fighting a uphill > battle every day. > > Is is time to place her in a residential care or > facility that can care for her better? > > I know that the time is drawing close. She cannot > stand alone and cannot sit without help. She is not > bedridden yet, but almost. She walks about 10 feet > from bathroom to bedroom a day. Then the rest of the > time I use the wheelchair to transport her from > living > room to bathroom. She wears a diaper and cannot fed > herself. I do just about everything for her now. So > my > question is this. Is it time to place her or do I > just > keep up trying to do the best I can? How do you know > when it is time? I am waiting for a sign from God. I > have had many signs, but I think that I am the one > hanging on here and not her. I feel like I am > throwing > in the towel and quitting if I place her in a > facility > too soon. So since she is still walking I have > waited. > I do not want a accident to be the reason that I > have > placed her. Everyday I pray and pray that I do not > drop her. It is so hard to get a person who is dead > weight to a standing position when you are just one > person. Do I hire someone for 8 hours a day at $17 > an > hour to help me? Or do I place her in a home? If > anyone has an answer out there please pass it along. > > Dena in CA > > > [Non-text portions of this message have been > removed] > > __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Hi Donna How do I call me Hospice? The doctor who saw her in November told me she did not qualify, yet. Can I call them in on my own? We have Kaiser Insurance her Southern California. She does not qualify for Medical either. You know it is better to be poor or very rich when you get to this situation. She is in between that. Thanks for your input. If I can call Hospice I will try to do so tomorrow. Dena --- Donna Mido wrote: > Dena, > > Start with Hospice care. Call them in and let them > help you with the decision. It will cost you > nothing. If you decide to go on Hospice, they can > bring in an air bed of some sort I heard about that > will help with the sores. They can also help some > of the day time hours. > > Please do that, even if they help you get her into a > facility. I know how difficult it is to decide > that. And I also know how hard it is to say " I have > had enough. " You must make the decision that is > best for you. And no one can help with that. If I > had had a choice, I would have kept Mom at home. > But the money or the wheel chair access I didn't > have. And I was to tired. > > The nh is no good answer. They will do things > different than you do. And I had a real hard time. > I thought a nh took " care " and they did in an > institutional kind of way. And Mom did better on > the real schedule that they provided. But she did > worse in other ways. So I had to be there anyway or > get someone there. They will tell you how many > patients they have per patient and it is never > enough for me. > > Hope this helps you think it through in your > tiredness and frustration. > > Donna R > > Do you want to read more about Lewy Body? You can > also read the Thistle, the LBD Newsletter. Just > click on: > > http://www.lewybodydementia.org > > > Bed Sores > > Hi Everyone > > I am feeling so frustrated right now. We just > returned > from the Dr. My Mom has yet another bed sore. She > has > them on her ears, butt, heals, the bone that sticks > out of her ankle and now the back of her calf. I can > do nothing right!! I am just so frustrated and feel > like crying. I try to turn her and put neosporin on > the wounds constantly. Like every time she goes to > the > bathroom, but they bleed and then stop, then bleed > and > then stop. It is the a merry-go-round effect. Now > the > Dr has prescribed 1% silver sulfadiazine cream to > help > with healing process and has referred us to wound > care. I have used an egg crate and booties for her > wounds and I just feel like I am fighting a uphill > battle every day. > > Is is time to place her in a residential care or > facility that can care for her better? > > I know that the time is drawing close. She cannot > stand alone and cannot sit without help. She is not > bedridden yet, but almost. She walks about 10 feet > from bathroom to bedroom a day. Then the rest of the > time I use the wheelchair to transport her from > living > room to bathroom. She wears a diaper and cannot fed > herself. I do just about everything for her now. So > my > question is this. Is it time to place her or do I > just > keep up trying to do the best I can? How do you know > when it is time? I am waiting for a sign from God. I > have had many signs, but I think that I am the one > hanging on here and not her. I feel like I am > throwing > in the towel and quitting if I place her in a > facility > too soon. So since she is still walking I have > waited. > I do not want a accident to be the reason that I > have > placed her. Everyday I pray and pray that I do not > drop her. It is so hard to get a person who is dead > weight to a standing position when you are just one > person. Do I hire someone for 8 hours a day at $17 > an > hour to help me? Or do I place her in a home? If > anyone has an answer out there please pass it along. > > Dena in CA > > > > __________________________________________ > Yahoo! DSL Something to write home about. > Just $16.99/mo. or less. > dsl.yahoo.com > > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 dena, my dad was on an air mattress that hleped keep the bedsores down, much better than an eggshell mattress, doc can order esp if you have hosp bed arleady if not, get a hosp bed, maybe if you dont have hospice you need to get them they are great adn can help you take care of the wounds and help you with cleaning of her, and basic care, hugs sharon -- Bed Sores Hi Everyone I am feeling so frustrated right now. We just returned from the Dr. My Mom has yet another bed sore. She has them on her ears, butt, heals, the bone that sticks out of her ankle and now the back of her calf. I can do nothing right!! I am just so frustrated and feel like crying. I try to turn her and put neosporin on the wounds constantly. Like every time she goes to the bathroom, but they bleed and then stop, then bleed and then stop. It is the a merry-go-round effect. Now the Dr has prescribed 1% silver sulfadiazine cream to help with healing process and has referred us to wound care. I have used an egg crate and booties for her wounds and I just feel like I am fighting a uphill battle every day. Is is time to place her in a residential care or facility that can care for her better? I know that the time is drawing close. She cannot stand alone and cannot sit without help. She is not bedridden yet, but almost. She walks about 10 feet from bathroom to bedroom a day. Then the rest of the time I use the wheelchair to transport her from living room to bathroom. She wears a diaper and cannot fed herself. I do just about everything for her now. So my question is this. Is it time to place her or do I just keep up trying to do the best I can? How do you know when it is time? I am waiting for a sign from God. I have had many signs, but I think that I am the one hanging on here and not her. I feel like I am throwing in the towel and quitting if I place her in a facility too soon. So since she is still walking I have waited. I do not want a accident to be the reason that I have placed her. Everyday I pray and pray that I do not drop her. It is so hard to get a person who is dead weight to a standing position when you are just one person. Do I hire someone for 8 hours a day at $17 an hour to help me? Or do I place her in a home? If anyone has an answer out there please pass it along. Dena in CA __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 I'm glad to see Stevie answered this for you. You don't need to tell them about what any MD said. Let them evaluate. This is not the time to show them how strong and helpful you can be. Cry!!!!! Use whatever you need to get the help. I remember screaming at some poor social worker because she didn't come to do an interview from the AD for 3 months. She tried to tell me she was busy . I told her I didn't care. I was at my wits end and if she wasn't going to come I need to know. I think she came the next day. (You see, I am a Social Worker and should know better.) They say the squeaky wheel get the grease. The states are trying to do some helping people at home so they won't got to the nh. I need to find out more about that. Anyone can check you Gov,. and Health Care from your own state. You might find some stuff there that you didn't know was available. Hope this helps. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Bed Sores > > Hi Everyone > > I am feeling so frustrated right now. We just > returned > from the Dr. My Mom has yet another bed sore. She > has > them on her ears, butt, heals, the bone that sticks > out of her ankle and now the back of her calf. I can > do nothing right!! I am just so frustrated and feel > like crying. I try to turn her and put neosporin on > the wounds constantly. Like every time she goes to > the > bathroom, but they bleed and then stop, then bleed > and > then stop. It is the a merry-go-round effect. Now > the > Dr has prescribed 1% silver sulfadiazine cream to > help > with healing process and has referred us to wound > care. I have used an egg crate and booties for her > wounds and I just feel like I am fighting a uphill > battle every day. > > Is is time to place her in a residential care or > facility that can care for her better? > > I know that the time is drawing close. She cannot > stand alone and cannot sit without help. She is not > bedridden yet, but almost. She walks about 10 feet > from bathroom to bedroom a day. Then the rest of the > time I use the wheelchair to transport her from > living > room to bathroom. She wears a diaper and cannot fed > herself. I do just about everything for her now. So > my > question is this. Is it time to place her or do I > just > keep up trying to do the best I can? How do you know > when it is time? I am waiting for a sign from God. I > have had many signs, but I think that I am the one > hanging on here and not her. I feel like I am > throwing > in the towel and quitting if I place her in a > facility > too soon. So since she is still walking I have > waited. > I do not want a accident to be the reason that I > have > placed her. Everyday I pray and pray that I do not > drop her. It is so hard to get a person who is dead > weight to a standing position when you are just one > person. Do I hire someone for 8 hours a day at $17 > an > hour to help me? Or do I place her in a home? If > anyone has an answer out there please pass it along. > > Dena in CA > > > > __________________________________________ > Yahoo! DSL Something to write home about. > Just $16.99/mo. or less. > dsl.yahoo.com > > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 PS Dena, You are right it is better to be poor or rich. I was in-between with Mom also. Don't believe everything MD's tell you. This is a disease many of them really don't understand. I nearly went crazy the time I had Mom in the hospital for 20 days and when he started her on meds I couldn't believe he was saying, " You treat all dementias the same. " ????? I already knew that wasn't true. Hope this helps. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Bed Sores > > Hi Everyone > > I am feeling so frustrated right now. We just > returned > from the Dr. My Mom has yet another bed sore. She > has > them on her ears, butt, heals, the bone that sticks > out of her ankle and now the back of her calf. I can > do nothing right!! I am just so frustrated and feel > like crying. I try to turn her and put neosporin on > the wounds constantly. Like every time she goes to > the > bathroom, but they bleed and then stop, then bleed > and > then stop. It is the a merry-go-round effect. Now > the > Dr has prescribed 1% silver sulfadiazine cream to > help > with healing process and has referred us to wound > care. I have used an egg crate and booties for her > wounds and I just feel like I am fighting a uphill > battle every day. > > Is is time to place her in a residential care or > facility that can care for her better? > > I know that the time is drawing close. She cannot > stand alone and cannot sit without help. She is not > bedridden yet, but almost. She walks about 10 feet > from bathroom to bedroom a day. Then the rest of the > time I use the wheelchair to transport her from > living > room to bathroom. She wears a diaper and cannot fed > herself. I do just about everything for her now. So > my > question is this. Is it time to place her or do I > just > keep up trying to do the best I can? How do you know > when it is time? I am waiting for a sign from God. I > have had many signs, but I think that I am the one > hanging on here and not her. I feel like I am > throwing > in the towel and quitting if I place her in a > facility > too soon. So since she is still walking I have > waited. > I do not want a accident to be the reason that I > have > placed her. Everyday I pray and pray that I do not > drop her. It is so hard to get a person who is dead > weight to a standing position when you are just one > person. Do I hire someone for 8 hours a day at $17 > an > hour to help me? Or do I place her in a home? If > anyone has an answer out there please pass it along. > > Dena in CA > > > > __________________________________________ > Yahoo! DSL Something to write home about. > Just $16.99/mo. or less. > dsl.yahoo.com > > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Stevie, Thanks for the referral. That will help her get started with a personal intro. Wow! We need more info like that. Thanks again. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Bed Sores > > Hi Everyone > > I am feeling so frustrated right now. We just > returned > from the Dr. My Mom has yet another bed sore. She > has > them on her ears, butt, heals, the bone that sticks > out of her ankle and now the back of her calf. I can > do nothing right!! I am just so frustrated and feel > like crying. I try to turn her and put neosporin on > the wounds constantly. Like every time she goes to > the > bathroom, but they bleed and then stop, then bleed > and > then stop. It is the a merry-go-round effect. Now > the > Dr has prescribed 1% silver sulfadiazine cream to > help > with healing process and has referred us to wound > care. I have used an egg crate and booties for her > wounds and I just feel like I am fighting a uphill > battle every day. > > Is is time to place her in a residential care or > facility that can care for her better? > > I know that the time is drawing close. She cannot > stand alone and cannot sit without help. She is not > bedridden yet, but almost. She walks about 10 feet > from bathroom to bedroom a day. Then the rest of the > time I use the wheelchair to transport her from > living > room to bathroom. She wears a diaper and cannot fed > herself. I do just about everything for her now. So > my > question is this. Is it time to place her or do I > just > keep up trying to do the best I can? How do you know > when it is time? I am waiting for a sign from God. I > have had many signs, but I think that I am the one > hanging on here and not her. I feel like I am > throwing > in the towel and quitting if I place her in a > facility > too soon. So since she is still walking I have > waited. > I do not want a accident to be the reason that I > have > placed her. Everyday I pray and pray that I do not > drop her. It is so hard to get a person who is dead > weight to a standing position when you are just one > person. Do I hire someone for 8 hours a day at $17 > an > hour to help me? Or do I place her in a home? If > anyone has an answer out there please pass it along. > > Dena in CA > > > [Non-text portions of this message have been > removed] > > __________________________________________ Yahoo! DSL Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Kathy, Where in Ill. are you? I am in Detroit (Subs) and am starting to keep a list of those in our area. (And I consider you are in our area. Could you use your last initial. We have several Kathys. It helps me know which one. Thanks, Donna Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Re: Bed Sores Hi Dena, My prayers and heart go out to you. My Mom is not at that stage yet, but I know it is coming. Making that final decision about placement is always difficult. I can speak however, from both sides on this subject. I am new to this LBDers support group but not the care of the elderly. I have a Mom with LBD and I am also a nursing home administrator of a quality skilled nursing facility in IL. Don't despair. There are very good nursing homes out there that will take excellent care of your Mom. It won't be as you would provide of course, but good care all the same. I know that I will be facing placement for my Mom in the future. I have heart pains over it but know that when the time comes it will be for the best for all of us. There comes a time when home care is not the best option for the LO or the family. And 24 hour home care costs much more than a nursing facility. I think calling hospice is an excellent first step. They call help you with care at home or with nursing home placement. It sounds like your Mom definitely needs an air bed. Eggcrates are not the way to go. They harbor bacteria and breed infections. Once bed sores start they are difficult to heal and it takes a long time for them to heal. You definitely need some professional help. If you want to check out facilities in your area you can do so online on the Medicare website. Go to nursing home compare and you can find info on the latest state surveys for the homes in your area and how well they provide care. They also have info on how to select a good nursing home. I hope this helps. Please don't blame yourself. It sounds like you have done a wonderful job for your Mom. It is not your fault she has reached this stage. It is this terrible disease which has stricken both of our Mothers. Hugs, Kathy Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 You're welcome! * * * * * * * Stevie, Thanks for the referral. That will help her get started with a personal intro. Wow! We need more info like that. Thanks again. Donna R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 LOL Dena!...that's what I said to my Unc's doctor when he turned the idea of Hospice down! Read what I wrote to Jan (lives in Northern Cal.) I will ask (the Director of Hospice in my area) about a reference for you too. Nothing to lose, right?! I find that you have to be almost " outspoken " before someone will listen to you...and sometimes mention that you have a good lawyer too. LOL I'll see what I can do. Hang in there kiddo....it's just life! Love, hugs, and Peace to you, Stevie * * * * * * * Stevie I am in Southern California in Colton which is inbetween Riverside and San Bernardino. And in Nov when we saw the Geriatric Doctor at Kaiser he told me she did not qualify for hospice yet. I do not know what qualifications they need. Death? Sorry to be sarcastic. I guess it is just my mood. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Dena....Let me know if you get to talk to . Don't give up!!! Keep fighting for your right to get help! The best to you, Stevie * * * * * * * * Dear Stevie This is my next call. God Bless you. However, I live in San Bernardino County, but I am sure they will direct me. You are a blessing. I live closer to Loma . Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Dena, yes, I have days as you described when I think I am falling apart emotionally and know it is stress but knowing and dealing with the issues is another thing Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Thank you Dena. Good Luck! Stevie I feel like it is Stevie to the rescue!! Thanks to for all your help. You are great. I know you have been though it all. I am sorry for that, but you have a lot of info for the rest of us. Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Dear Donna R Thank you for your advise. I am going to call this afternoon. My Mom is so bad today. I took her to get her hair done and it was all I could do. I am beginning to think it is time to find a facility. I am leaning toward residential care rather than a nursing home. I will let you know what I find out. Thank you for caring!! Dena --- Donna Mido wrote: > Dena, > > Start with Hospice care. Call them in and let them > help you with the decision. It will cost you > nothing. If you decide to go on Hospice, they can > bring in an air bed of some sort I heard about that > will help with the sores. They can also help some > of the day time hours. > > Please do that, even if they help you get her into a > facility. I know how difficult it is to decide > that. And I also know how hard it is to say " I have > had enough. " You must make the decision that is > best for you. And no one can help with that. If I > had had a choice, I would have kept Mom at home. > But the money or the wheel chair access I didn't > have. And I was to tired. > > The nh is no good answer. They will do things > different than you do. And I had a real hard time. > I thought a nh took " care " and they did in an > institutional kind of way. And Mom did better on > the real schedule that they provided. But she did > worse in other ways. So I had to be there anyway or > get someone there. They will tell you how many > patients they have per patient and it is never > enough for me. > > Hope this helps you think it through in your > tiredness and frustration. > > Donna R > > Do you want to read more about Lewy Body? You can > also read the Thistle, the LBD Newsletter. Just > click on: > > http://www.lewybodydementia.org > > > Bed Sores > > Hi Everyone > > I am feeling so frustrated right now. We just > returned > from the Dr. My Mom has yet another bed sore. She > has > them on her ears, butt, heals, the bone that sticks > out of her ankle and now the back of her calf. I can > do nothing right!! I am just so frustrated and feel > like crying. I try to turn her and put neosporin on > the wounds constantly. Like every time she goes to > the > bathroom, but they bleed and then stop, then bleed > and > then stop. It is the a merry-go-round effect. Now > the > Dr has prescribed 1% silver sulfadiazine cream to > help > with healing process and has referred us to wound > care. I have used an egg crate and booties for her > wounds and I just feel like I am fighting a uphill > battle every day. > > Is is time to place her in a residential care or > facility that can care for her better? > > I know that the time is drawing close. She cannot > stand alone and cannot sit without help. She is not > bedridden yet, but almost. She walks about 10 feet > from bathroom to bedroom a day. Then the rest of the > time I use the wheelchair to transport her from > living > room to bathroom. She wears a diaper and cannot fed > herself. I do just about everything for her now. So > my > question is this. Is it time to place her or do I > just > keep up trying to do the best I can? How do you know > when it is time? I am waiting for a sign from God. I > have had many signs, but I think that I am the one > hanging on here and not her. I feel like I am > throwing > in the towel and quitting if I place her in a > facility > too soon. So since she is still walking I have > waited. > I do not want a accident to be the reason that I > have > placed her. Everyday I pray and pray that I do not > drop her. It is so hard to get a person who is dead > weight to a standing position when you are just one > person. Do I hire someone for 8 hours a day at $17 > an > hour to help me? Or do I place her in a home? If > anyone has an answer out there please pass it along. > > Dena in CA > > > > __________________________________________ > Yahoo! DSL Something to write home about. > Just $16.99/mo. or less. > dsl.yahoo.com > > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Dear Courage Thank you for info on mole skin. I have a caregiver in tomorrow and hopefully I will be able to get to a medical supply store. You have all been great with your suggestions, but I really am starting to lean toward residential care. I think. My mom is hardly walking and her head hangs so low that I had to hold it up while she was under the dryer today at the hair salon. This is a really bad day. And all I want to do is cry. I feel like I am having an emotional break down or something is wrong with me. Do you ever do this? Dena --- gaat wrote: > Dena, > My heart is going out to you. No matter how well we > care for our LO's > the reality is that they are going downhill but it > sure doesn't help us > feel any better. > We used this product that works like a second skin. > It is large patches > that we cut to size and they cover the bed sore so > that moisture doesn't > get in and has a chance to heal. Check out your > local pharmacy. The > one I use at home for blisters for tight or new > shoes is called Mole > Skin and it works like a charm. > Sending you strength. > Courage > > > __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Dear Stevie This is my next call. God Bless you. However, I live in San Bernardino County, but I am sure they will direct me. You are a blessing. I live closer to Loma . Dena --- juperant@... wrote: > Dena, > > Do you belong to the Kaiser Hospital out by Yorba > ? If so, that is > Orange County and you can call Hospice Care of > California at . They > have an office in Placentia, Santa Fe Springs and > Laguna Woods. They will > come to you or recommend someone in your area. > is the Director. > Tell her Stevie said to call. > > Good Luck....Stevie > > * * * * * * * * > Hi Donna > > How do I call me Hospice? The doctor who saw her in > November told me she did not qualify, yet. Can I > call > them in on my own? We have Kaiser Insurance her > Southern California. She does not qualify for > Medical > either. You know it is better to be poor or very > rich > when you get to this situation. She is in between > that. > > Thanks for your input. If I can call Hospice I will > try to do so tomorrow. > > Dena > > > [Non-text portions of this message have been > removed] > > __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Stevie I feel like it is Stevie to the rescue!! Thanks to for all your help. You are great. I know you have been though it all. I am sorry for that, but you have a lot of info for the rest of us. Dena --- juperant@... wrote: > LOL Dena!...that's what I said to my Unc's doctor > when he turned the idea of > Hospice down! Read what I wrote to Jan (lives in > Northern Cal.) I will ask > (the Director of Hospice in my area) about a > reference for you too. > Nothing to lose, right?! I find that you have to be > almost " outspoken " before > someone will listen to you...and sometimes mention > that you have a good lawyer > too. LOL I'll see what I can do. Hang in there > kiddo....it's just life! > Love, hugs, and Peace to you, Stevie > > * * * * * * * > Stevie > > I am in Southern California in Colton which is > inbetween Riverside and San Bernardino. And in Nov > when we saw the Geriatric Doctor at Kaiser he told > me > she did not qualify for hospice yet. I do not know > what qualifications they need. Death? Sorry to be > sarcastic. I guess it is just my mood. > > > [Non-text portions of this message have been > removed] > > __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Dear Donna I am not really assertive, but I will do my best. Thanks Dena --- Donna Mido wrote: > I'm glad to see Stevie answered this for you. You > don't need to tell them about what any MD said. Let > them evaluate. This is not the time to show them > how strong and helpful you can be. Cry!!!!! Use > whatever you need to get the help. > > I remember screaming at some poor social worker > because she didn't come to do an interview from the > AD for 3 months. She tried to tell me she was busy > . I told her I didn't care. I was at my wits end > and if she wasn't going to come I need to know. I > think she came the next day. (You see, I am a > Social Worker and should know better.) > > They say the squeaky wheel get the grease. The > states are trying to do some helping people at home > so they won't got to the nh. I need to find out > more about that. Anyone can check you Gov,. and > Health Care from your own state. You might find > some stuff there that you didn't know was available. > > > Hope this helps. > > Donna R > > Do you want to read more about Lewy Body? You can > also read the Thistle, the LBD Newsletter. Just > click on: > > http://www.lewybodydementia.org > > > Bed Sores > > > > Hi Everyone > > > > I am feeling so frustrated right now. We just > > returned > > from the Dr. My Mom has yet another bed sore. She > > has > > them on her ears, butt, heals, the bone that > sticks > > out of her ankle and now the back of her calf. I > can > > do nothing right!! I am just so frustrated and > feel > > like crying. I try to turn her and put neosporin > on > > the wounds constantly. Like every time she goes to > > the > > bathroom, but they bleed and then stop, then bleed > > and > > then stop. It is the a merry-go-round effect. Now > > the > > Dr has prescribed 1% silver sulfadiazine cream to > > help > > with healing process and has referred us to wound > > care. I have used an egg crate and booties for her > > wounds and I just feel like I am fighting a uphill > > battle every day. > > > > Is is time to place her in a residential care or > > facility that can care for her better? > > > > I know that the time is drawing close. She cannot > > stand alone and cannot sit without help. She is > not > > bedridden yet, but almost. She walks about 10 feet > > from bathroom to bedroom a day. Then the rest of > the > > time I use the wheelchair to transport her from > > living > > room to bathroom. She wears a diaper and cannot > fed > > herself. I do just about everything for her now. > So > > my > > question is this. Is it time to place her or do I > > just > > keep up trying to do the best I can? How do you > know > > when it is time? I am waiting for a sign from God. > I > > have had many signs, but I think that I am the one > > hanging on here and not her. I feel like I am > > throwing > > in the towel and quitting if I place her in a > > facility > > too soon. So since she is still walking I have > > waited. > > I do not want a accident to be the reason that I > > have > > placed her. Everyday I pray and pray that I do not > > drop her. It is so hard to get a person who is > dead > > weight to a standing position when you are just > one > > person. Do I hire someone for 8 hours a day at $17 > > an > > hour to help me? Or do I place her in a home? If > > anyone has an answer out there please pass it > along. > > > > Dena in CA > > > > > > > > __________________________________________ > > Yahoo! DSL Something to write home about. > > Just $16.99/mo. or less. > > dsl.yahoo.com > > > > > > > > > > Welcome to LBDcaregivers. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Dear Kathy Thank you for making me feel much better. I know in my head that this is a downhill progression, but my heart wants to keep her at the same level she was 8 months ago when she came to live with me. She is way beyond that. I have always said over and over that I know the time is coming when I will have to place her, but it seemed in the distant future and now that future is here. If I do place my mom in a NH I will check out the websit. At this time I am looking at residential care. I hope it is more personalable. I could be wrong. I have a few good leads. Thank you again, Kathy Dena --- Kathy wrote: > Hi Dena, > My prayers and heart go out to you. My Mom is not > at that stage > yet, but I know it is coming. Making that final > decision about > placement is always difficult. I can speak however, > from both sides > on this subject. I am new to this LBDers support > group but not the > care of the elderly. > > I have a Mom with LBD and I am also a nursing home > administrator of > a quality skilled nursing facility in IL. Don't > despair. There are > very good nursing homes out there that will take > excellent care of > your Mom. It won't be as you would provide of > course, but good care > all the same. I know that I will be facing > placement for my Mom in > the future. I have heart pains over it but know > that when the time > comes it will be for the best for all of us. There > comes a time > when home care is not the best option for the LO or > the family. And > 24 hour home care costs much more than a nursing > facility. > > I think calling hospice is an excellent first step. > They call help > you with care at home or with nursing home > placement. It sounds > like your Mom definitely needs an air bed. > Eggcrates are not the > way to go. They harbor bacteria and breed > infections. Once bed > sores start they are difficult to heal and it takes > a long time for > them to heal. You definitely need some professional > help. > > If you want to check out facilities in your area you > can do so > online on the Medicare website. Go to nursing home > compare and you > can find info on the latest state surveys for the > homes in your area > and how well they provide care. They also have info > on how to > select a good nursing home. > > I hope this helps. Please don't blame yourself. It > sounds like you > have done a wonderful job for your Mom. It is not > your fault she > has reached this stage. It is this terrible disease > which has > stricken both of our Mothers. > > Hugs, > Kathy > > > > __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Dear Stevie I did not get to speak to , but they knew she who she was and said she was a great nurse with them. I will be posting another message. Please look for it later. Dena --- juperant@... wrote: > Dena....Let me know if you get to talk to > . Don't give up!!! > Keep fighting for your right to get help! The best > to you, Stevie > > * * * * * * * * > Dear Stevie > > This is my next call. God Bless you. However, I live > in San Bernardino County, but I am sure they will > direct me. You are a blessing. I live closer to Loma > . > > Dena > > > [Non-text portions of this message have been > removed] > > __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 HI Dena, Gosh, did I ever get this feeling (and still do somethimes!!!!!!!!) When mom first went into care, in fact, when we were just even calling for appts to check out NH/LTCF I was overwhelmed with guilt and sadness. I cried like a river at the drop of a hat and had such a hard time sleeping. I'm sure we could have gone another 6 months or so keeping mom at home but there was no denying that the transition into care was going to have to come. I survived this period by taking each day at a time as it hurt like hell to think of mom not living at home. However, once we got mom out of the first NH we selected (she stayed there a week)- it was a huge old n house that we though would be " cozy " and more like home than the newer facility type buildings - I started to notice how things were run and over the next little while I was able to leave mom with other members of the family and staff. Up until that time, I was at the NH first thing in the morning and left when she went to bed at night. If anything, I was spending more time at the NH than I was when she was at home. It took a while to trust others to care for mom but once I took that leap it was amazing how much more rested and present I was able to be with mom. When you have been the one to do all the heavy lifting/worrying it sure is nice to have someone come and help you. You are not letting you, you are joining hands. I have said in the past and will continue to say it in the future " a person's NH experience will be as good as their family makes it. " I got to know the staff, the NH schedule and worked with it. They knew that we were heavily invested in mom so they became invested in her too. If I was happy with something I let the staff know and if I wasn't happy I'd let them know that too. It was a period of adjustment. I know the staff weren't crazy about us at first but they came to apppreciate us and how we came to care for mom. Also, we finally broke down and got mom a personal care-giver and she has been with mom ever since and onto this new LTCF which we like even better than the last place. This place has been mom's third new home so don't be afraid to move her if the fit isn't right. Sending you much strength. Our responsiblilty and love for our parents do not end when they enter care. We just get some much needed help to continue along this journey. Courage Dena LEAVITT wrote: > Dear Courage > > Thank you for info on mole skin. I have a caregiver in > tomorrow and hopefully I will be able to get to a > medical supply store. > You have all been great with your suggestions, but I > really am starting to lean toward residential care. I > think. My mom is hardly walking and her head hangs so > low that I had to hold it up while she was under the > dryer today at the hair salon. This is a really bad > day. And all I want to do is cry. I feel like I am > having an emotional break down or something is wrong > with me. Do you ever do this? > > Dena > > --- gaat wrote: > > > Dena, > > My heart is going out to you. No matter how well we > > care for our LO's > > the reality is that they are going downhill but it > > sure doesn't help us > > feel any better. > > We used this product that works like a second skin. > > It is large patches > > that we cut to size and they cover the bed sore so > > that moisture doesn't > > get in and has a chance to heal. Check out your > > local pharmacy. The > > one I use at home for blisters for tight or new > > shoes is called Mole > > Skin and it works like a charm. > > Sending you strength. > > Courage > > > > > > > > > > > __________________________________________ > Yahoo! DSL – Something to write home about. > Just $16.99/mo. or less. > dsl.yahoo.com > > Welcome to LBDcaregivers. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 You go girl!!! You deserve to have help and don't believe the first person you talk to. I was like you and it didn't help me to be paitient and understanding. We'll be your cheerleadings. Support is so helpful. Good luck! Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Bed Sores > > > > Hi Everyone > > > > I am feeling so frustrated right now. We just > > returned > > from the Dr. My Mom has yet another bed sore. She > > has > > them on her ears, butt, heals, the bone that > sticks > > out of her ankle and now the back of her calf. I > can > > do nothing right!! I am just so frustrated and > feel > > like crying. I try to turn her and put neosporin > on > > the wounds constantly. Like every time she goes to > > the > > bathroom, but they bleed and then stop, then bleed > > and > > then stop. It is the a merry-go-round effect. Now > > the > > Dr has prescribed 1% silver sulfadiazine cream to > > help > > with healing process and has referred us to wound > > care. I have used an egg crate and booties for her > > wounds and I just feel like I am fighting a uphill > > battle every day. > > > > Is is time to place her in a residential care or > > facility that can care for her better? > > > > I know that the time is drawing close. She cannot > > stand alone and cannot sit without help. She is > not > > bedridden yet, but almost. She walks about 10 feet > > from bathroom to bedroom a day. Then the rest of > the > > time I use the wheelchair to transport her from > > living > > room to bathroom. She wears a diaper and cannot > fed > > herself. I do just about everything for her now. > So > > my > > question is this. Is it time to place her or do I > > just > > keep up trying to do the best I can? How do you > know > > when it is time? I am waiting for a sign from God. > I > > have had many signs, but I think that I am the one > > hanging on here and not her. I feel like I am > > throwing > > in the towel and quitting if I place her in a > > facility > > too soon. So since she is still walking I have > > waited. > > I do not want a accident to be the reason that I > > have > > placed her. Everyday I pray and pray that I do not > > drop her. It is so hard to get a person who is > dead > > weight to a standing position when you are just > one > > person. Do I hire someone for 8 hours a day at $17 > > an > > hour to help me? Or do I place her in a home? If > > anyone has an answer out there please pass it > along. > > > > Dena in CA > > > > > > > > __________________________________________ > > Yahoo! DSL Something to write home about. > > Just $16.99/mo. or less. > > dsl.yahoo.com > > > > > > > > > > Welcome to LBDcaregivers. > > > > > > Quote Link to comment Share on other sites More sharing options...
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