Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 hi all, i guess every state is different with hospice, in florida dad qualified under the assumption that we were not going to do anything to prolong his life. he was tired of going to doctors. he was diag may 2004, and we started hopice nov 2004, we had hospice until 7/05 when he had hip surgery and never went home after that, had we brought him home on oct 5 like we had planned (he died 9/25) hospice would have restarted. hospice had nurses come twice a week to check on dad, at first we had someone come to bathe dad 2 times a week but as he was losing controls of his bowels, we were increased to 5 days a week, and council of aging got us onto a program that i got pullups , antibotic cream, cornstarch baby powder, diaper wipes, and bed pads everymonth, plus an extra 24 hours respice care and bathing on weekends for a copay of only 72 a month, oh yes plus meals on wheels for lunch was included, it was frozen dinners that we microwaved and pureed. i couldnt beliee it all the supples alone i expected a copay but ot have meals on wheel and 24 hours a wekek respite, i was in heaven, but unfortunatley dad broke his hip and i didnt get to utilize that except for 2 months, but it was a blessing. call the council of aging, and elders affairs office, they can put you in the right direction to get help. they are great,. call your churchk, they may have people who are willing to come visit and sit with homebound. etc. if you have a nursing school nearby , ask to speak to an insturctor, maybe the can refer you to a student nurse who is willing to have hands on experience at minimal pay. those are a few things that i tried to find help. something i didnt try but was suggested to me was to put a sign up at the local hosp bulletin board and maybe someone there would know someone or would want to make a little 'cash ' money on side. good luck and hugs sharon m -- 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 5, 2006 Report Share Posted January 5, 2006 We are from Delaware and contacted Elder Care in search for help. We were referrred to a program with Christiana Care Health Services called Evergreen, where help would come in for 4 hours a week. This program was for patients with dementia and the nurse tech was very knowledgable in LBD. Our hours were eventually increased to 8hrs. or more a week. However, after making our initial inquiry and being put on a waiting list, it was a year before we heard from them. It was worth the wait. The experienced CARE was wonderful. We also had Compassionate Care Hospice, so there was someone to bath, shave and dress Dad 5 days a week. An RN would visit twice a week. Hospice also has volunteers. We had a wonderful lady sat with Dad for 2 hrs every Thursday so Mom could run errands. We had this service from Evergreen for 3 years and Hopice for 2 years. There is help out there, but you may have a lot of rocks to unturn first. Go for it! Gerry Wilmington, De. 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 Thanks Gerry. I will put that in the " file " too! 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 Re: hospice We are from Delaware and contacted Elder Care in search for help. We were referrred to a program with Christiana Care Health Services called Evergreen, where help would come in for 4 hours a week. This program was for patients with dementia and the nurse tech was very knowledgable in LBD. Our hours were eventually increased to 8hrs. or more a week. However, after making our initial inquiry and being put on a waiting list, it was a year before we heard from them. It was worth the wait. The experienced CARE was wonderful. We also had Compassionate Care Hospice, so there was someone to bath, shave and dress Dad 5 days a week. An RN would visit twice a week. Hospice also has volunteers. We had a wonderful lady sat with Dad for 2 hrs every Thursday so Mom could run errands. We had this service from Evergreen for 3 years and Hopice for 2 years. There is help out there, but you may have a lot of rocks to unturn first. Go for it! Gerry Wilmington, De. 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 12, 2006 Report Share Posted January 12, 2006 Hi Everyone Just wanted to let you all know that my mom was admitted to hospice on Tuesday. When the nurse came out she told me it was an admit and not an evaluation. I was surprised. Apparently her doctor ordered it that way. We will now see the nurse weekly and the doctor every 12 weeks and have a home care caregiver give her a bath twice weekly. It has been a lot for me to absorb all at once. I still hate the word, but having some help is exactually what I needed. I have not decided about the hospital bed yet. We will probably go ahead and get it. It's just that we just got her bedroom redecorated and a new comforter etc... for Christmas. It looks very nice. But I know the hospital bed will be more practical. We got a hospice kit with several meds included. One of them is Ativan. I won't be using that one. I told the Dr. I did not want that and he said what I wanted instead and I told me. He was rather surprised, but the nurse had already ordered the kit. He also took my mom off of most of her drugs. Do you think I should eliminate them all at once? He took her off of the baby aspirin, Lisinopril for high blood pressure, but she would still be on Lopressor for her heart and blood pressure. He removed Primidone for mild shaking, Prozac and Aricept. I am most worried about the Aricept removal. Does anyone have any words of wisdom regarding the elimination of Aricept? Mind you her doses are very small on all these drugs, so I am thinking it should not be a huge shock. He did not explain how to eliminate these drugs. I was going to do one drug at a time. What do you think? He kept her on the Pepcid, Lopressor, Namenda, Risperdal and Clonazepam. I know how you all feel about the Risperdal. But at this point it has not been a terrible drug for her. I sort of feel like if it ain't broke don't fix it. She is still awake at least two to three nights a week. All night long. Talking to her Lewy Friends. I have gotten to the point that I turn the monitor way down so my poor husband can sleep. He gets up at 5 a.m. and so do I most days. Today it was 4 a.m. since my mom did not sleep all night again. I still feel like I can't do this until the end though. My son who is 19 does not want Grandma to die in our home. It feaks him out. Which it probably would if I was 19 too. My Mom never requested to die at home. She die has a couple of times that she didn't want to go to a nursing home until the very end. I hope I can honor that. I am doing all I can at this point. Also the nurse wants her in bed most of day on her side to stay off of the bed sores. I worry about that also. She said she should be up only for one hour at meals and in bed the rest of the time. The sore is stage 1 and stage 2 in spots, but not a really bad one. I hope this doesn't last too long. The new sore on the back of her calf is due to poor circulation and not a pressure wound. I have soooo many creams and diapers and gaze pads and chugs now. All free of course. I just had bought some before she was admitted. I feel blessed that she was accepted, yet a sort of scared sadness too. It's weird. Just wanted to update you, sorry to rattle on and on. Dena in CA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Dean-- I am glad you were able to get Hospice I don't know how we would have managed without them. My Dad was kept on the majority of his medication including Aricept until a week before he died. We had Hospice for 2 years. The staff became part of our family. I don't know if you have received all of your initial supplies, but the one thing that Hospice supplied and shocked me was oxygen. We received 2 different types of cannisters. We only used it on very rare occasions. I don't know if it is protocol to have oxygen in the house, but several years prior to the Dx of LBD, Dad had severe anemia from colon cancer for which he had surgery without any further problems with his hemoglobin. When Dad's bottom was looking like it was breaking down, Hospice ordered a special air mattress with alternating pressure. We also turned him frequently. Towards the end, one thing was overlooked was his heels.. He developed black pressure spots on both of his heels. To prevent further break down, we kept his heels elevated off the bed, etc. I am sure they would have broken down, but Dad died about a week later. I am glad that his feet never entirely broke down because I understand it is painful. Dad did not need any additional pain. I really feel for your teenage son. It is very difficult for children and teens. Matter of fact, it is hard on everyone. My 16 year old grandaughter, who has real emotional problem, would not come see my Dad for the last few months. She afraid she would have an anxiety attack. Much to my surprise, when Dad died she showed up with her Mother at midnight, She sat with Dad and the family until he died early in the morning. She did as much as any adults in repositioning her Great Grandfather and keeping him comfortable. I was so glad she had this last opportunity, but if she chose not to be there, I would have understood. We all have to do what we have to cope and get through this experience the best we can. My heart and prayers are with you and your family. Gerry Wilmington, De. Hospice Hi Everyone Just wanted to let you all know that my mom was admitted to hospice on Tuesday. When the nurse came out she told me it was an admit and not an evaluation. I was surprised. Apparently her doctor ordered it that way. We will now see the nurse weekly and the doctor every 12 weeks and have a home care caregiver give her a bath twice weekly. It has been a lot for me to absorb all at once. I still hate the word, but having some help is exactually what I needed. I have not decided about the hospital bed yet. We will probably go ahead and get it. It's just that we just got her bedroom redecorated and a new comforter etc... for Christmas. It looks very nice. But I know the hospital bed will be more practical. We got a hospice kit with several meds included. One of them is Ativan. I won't be using that one. I told the Dr. I did not want that and he said what I wanted instead and I told me. He was rather surprised, but the nurse had already ordered the kit. He also took my mom off of most of her drugs. Do you think I should eliminate them all at once? He took her off of the baby aspirin, Lisinopril for high blood pressure, but she would still be on Lopressor for her heart and blood pressure. He removed Primidone for mild shaking, Prozac and Aricept. I am most worried about the Aricept removal. Does anyone have any words of wisdom regarding the elimination of Aricept? Mind you her doses are very small on all these drugs, so I am thinking it should not be a huge shock. He did not explain how to eliminate these drugs. I was going to do one drug at a time. What do you think? He kept her on the Pepcid, Lopressor, Namenda, Risperdal and Clonazepam. I know how you all feel about the Risperdal. But at this point it has not been a terrible drug for her. I sort of feel like if it ain't broke don't fix it. She is still awake at least two to three nights a week. All night long. Talking to her Lewy Friends. I have gotten to the point that I turn the monitor way down so my poor husband can sleep. He gets up at 5 a.m. and so do I most days. Today it was 4 a.m. since my mom did not sleep all night again. I still feel like I can't do this until the end though. My son who is 19 does not want Grandma to die in our home. It feaks him out. Which it probably would if I was 19 too. My Mom never requested to die at home. She die has a couple of times that she didn't want to go to a nursing home until the very end. I hope I can honor that. I am doing all I can at this point. Also the nurse wants her in bed most of day on her side to stay off of the bed sores. I worry about that also. She said she should be up only for one hour at meals and in bed the rest of the time. The sore is stage 1 and stage 2 in spots, but not a really bad one. I hope this doesn't last too long. The new sore on the back of her calf is due to poor circulation and not a pressure wound. I have soooo many creams and diapers and gaze pads and chugs now. All free of course. I just had bought some before she was admitted. I feel blessed that she was accepted, yet a sort of scared sadness too. It's weird. Just wanted to update you, sorry to rattle on and on. Dena in CA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Hi Gerry I will probably wind up getting a hospital bed soon and a air bed also. We have not received Oxygen however, I do not think we need any either. We have had some nice hospice staff so far. A bath lady, nurse and doctor. I think I will be seeing a social worker too at some point. This is all so new to me I am not sure if I am coming or going this week. I have visiting angels also, so I can still get out. At first I loved staying home and my mom was not too bad, but now I am getting a little stir crazy. I was a full time secretary or should I say Office Professional with a husband and two kids with their boyfriend/girlfriend here most of the time. Now, my daughter (22)moved into her grandmothers home with a girl from her work and my son (19) lives 45 minutes away at this girlfriends home during the week and drives to work with her father. When he is home he ignores his grandma. I do not blame him, he is 19, but it does hurt me a little to see him so afraid to try to talk to her because it upsets him so much to see her like this. I wish he could at least say Hello to her. I believe that is another reason he took the job with his girlfriends father. So he would not have to deal with all of this. I love him a lot and I might be the same at 19. He was devastate when my dad his grandfather died at age 5. He would not believe it for a long time. When he was in the first grade he wrote a paper on his grandfathers dying. It won several awards in the school district. It was so precious, but I then realized how hard that was for him. Now he says he very little memories of my dad. I think he just has a wall up so he won't get hurt again. But little does he know he will. Thank you Gerry. God bless Dena --- Gerry Deverell wrote: > Dean-- > I am glad you were able to get Hospice I don't know > how we would have managed without them. My Dad was > kept on the majority of his medication including > Aricept until a week before he died. We had Hospice > for 2 years. The staff became part of our family. > > I don't know if you have received all of your > initial supplies, but the one thing that Hospice > supplied and shocked me was oxygen. We received 2 > different types of cannisters. We only used it on > very rare occasions. I don't know if it is protocol > to have oxygen in the house, but several years prior > to the Dx of LBD, Dad had severe anemia from colon > cancer for which he had surgery without any further > problems with his hemoglobin. > > When Dad's bottom was looking like it was breaking > down, Hospice ordered a special air mattress with > alternating pressure. We also turned him > frequently. Towards the end, one thing was > overlooked was his heels.. He developed black > pressure spots on both of his heels. To prevent > further break down, we kept his heels elevated off > the bed, etc. I am sure they would have broken > down, but Dad died about a week later. I am glad > that his feet never entirely broke down because I > understand it is painful. Dad did not need any > additional pain. > > I really feel for your teenage son. It is very > difficult for children and teens. Matter of fact, > it is hard on everyone. My 16 year old > grandaughter, who has real emotional problem, would > not come see my Dad for the last few months. She > afraid she would have an anxiety attack. Much to my > surprise, when Dad died she showed up with her > Mother at midnight, She sat with Dad and the family > until he died early in the morning. She did as > much as any adults in repositioning her Great > Grandfather and keeping him comfortable. I was so > glad she had this last opportunity, but if she chose > not to be there, I would have understood. We all > have to do what we have to cope and get through this > experience the best we can. > > My heart and prayers are with you and your family. > Gerry > Wilmington, De. > Hospice > > > Hi Everyone > > Just wanted to let you all know that my mom was > admitted to hospice on Tuesday. When the nurse > came > out she told me it was an admit and not an > evaluation. > I was surprised. Apparently her doctor ordered it > that > way. We will now see the nurse weekly and the > doctor > every 12 weeks and have a home care caregiver give > her > a bath twice weekly. It has been a lot for me to > absorb all at once. I still hate the word, but > having > some help is exactually what I needed. I have not > decided about the hospital bed yet. We will > probably > go ahead and get it. It's just that we just got > her > bedroom redecorated and a new comforter etc... for > Christmas. It looks very nice. But I know the > hospital > bed will be more practical. > > We got a hospice kit with several meds included. > One > of them is Ativan. I won't be using that one. I > told > the Dr. I did not want that and he said what I > wanted > instead and I told me. He was rather surprised, > but > the nurse had already ordered the kit. He also > took my > mom off of most of her drugs. Do you think I > should > eliminate them all at once? He took her off of the > baby aspirin, Lisinopril for high blood pressure, > but > she would still be on Lopressor for her heart and > blood pressure. He removed Primidone for mild > shaking, Prozac and Aricept. I am most worried > about > the Aricept removal. Does anyone have any words of > wisdom regarding the elimination of Aricept? Mind > you > her doses are very small on all these drugs, so I > am > thinking it should not be a huge shock. He did not > explain how to eliminate these drugs. I was going > to > do one drug at a time. What do you think? He kept > her > on the Pepcid, Lopressor, Namenda, Risperdal and > Clonazepam. I know how you all feel about the > Risperdal. But at this point it has not been a > terrible drug for her. I sort of feel like if it > ain't > broke don't fix it. She is still awake at least > two to > three nights a week. All night long. Talking to > her > Lewy Friends. I have gotten to the point that I > turn > the monitor way down so my poor husband can sleep. > He > gets up at 5 a.m. and so do I most days. Today it > was > 4 a.m. since my mom did not sleep all night again. > > I still feel like I can't do this until the end > though. My son who is 19 does not want Grandma to > die > in our home. It feaks him out. Which it probably > would > if I was 19 too. My Mom never requested to die at > home. She die has a couple of times that she > didn't > want to go to a nursing home until the very end. I > hope I can honor that. I am doing all I can at > this > point. > > Also the nurse wants her in bed most of day on her > side to stay off of the bed sores. I worry about > that > also. She said she should be up only for one hour > at > meals and in bed the rest of the time. The sore is > stage 1 and stage 2 in spots, but not a really bad > one. I hope this doesn't last too long. The new > sore > on the back of her calf is due to poor circulation > and > not a pressure wound. I have soooo many creams and > diapers and gaze pads and chugs now. All free of > course. I just had bought some before she was > admitted. I feel blessed that she was accepted, > yet a > sort of scared sadness too. It's weird. > > Just wanted to update you, sorry to rattle on and > on. > > Dena in CA > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Dena, Just a quick reply. My Boys (3)all had trouble being around Mom even at the beginning. It was so difficult for them. My daughter didn't have nearly as much trouble with the whole idea. What she always said was that she was here to " help " me. I think the boys, who are old enough and all their own families didn't refocus in the same kind of way. The boys could come and help me with the house. But otherwise they just stayed away. I did appreciate the things they did do. But it never occured to me until later as we discussed it, they just didn't know what " do with " Mom. 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 Re: Hospice Hi Gerry I will probably wind up getting a hospital bed soon and a air bed also. We have not received Oxygen however, I do not think we need any either. We have had some nice hospice staff so far. A bath lady, nurse and doctor. I think I will be seeing a social worker too at some point. This is all so new to me I am not sure if I am coming or going this week. I have visiting angels also, so I can still get out. At first I loved staying home and my mom was not too bad, but now I am getting a little stir crazy. I was a full time secretary or should I say Office Professional with a husband and two kids with their boyfriend/girlfriend here most of the time. Now, my daughter (22)moved into her grandmothers home with a girl from her work and my son (19) lives 45 minutes away at this girlfriends home during the week and drives to work with her father. When he is home he ignores his grandma. I do not blame him, he is 19, but it does hurt me a little to see him so afraid to try to talk to her because it upsets him so much to see her like this. I wish he could at least say Hello to her. I believe that is another reason he took the job with his girlfriends father. So he would not have to deal with all of this. I love him a lot and I might be the same at 19. He was devastate when my dad his grandfather died at age 5. He would not believe it for a long time. When he was in the first grade he wrote a paper on his grandfathers dying. It won several awards in the school district. It was so precious, but I then realized how hard that was for him. Now he says he very little memories of my dad. I think he just has a wall up so he won't get hurt again. But little does he know he will. Thank you Gerry. God bless Dena --- Gerry Deverell wrote: > Dean-- > I am glad you were able to get Hospice I don't know > how we would have managed without them. My Dad was > kept on the majority of his medication including > Aricept until a week before he died. We had Hospice > for 2 years. The staff became part of our family. > > I don't know if you have received all of your > initial supplies, but the one thing that Hospice > supplied and shocked me was oxygen. We received 2 > different types of cannisters. We only used it on > very rare occasions. I don't know if it is protocol > to have oxygen in the house, but several years prior > to the Dx of LBD, Dad had severe anemia from colon > cancer for which he had surgery without any further > problems with his hemoglobin. > > When Dad's bottom was looking like it was breaking > down, Hospice ordered a special air mattress with > alternating pressure. We also turned him > frequently. Towards the end, one thing was > overlooked was his heels.. He developed black > pressure spots on both of his heels. To prevent > further break down, we kept his heels elevated off > the bed, etc. I am sure they would have broken > down, but Dad died about a week later. I am glad > that his feet never entirely broke down because I > understand it is painful. Dad did not need any > additional pain. > > I really feel for your teenage son. It is very > difficult for children and teens. Matter of fact, > it is hard on everyone. My 16 year old > grandaughter, who has real emotional problem, would > not come see my Dad for the last few months. She > afraid she would have an anxiety attack. Much to my > surprise, when Dad died she showed up with her > Mother at midnight, She sat with Dad and the family > until he died early in the morning. She did as > much as any adults in repositioning her Great > Grandfather and keeping him comfortable. I was so > glad she had this last opportunity, but if she chose > not to be there, I would have understood. We all > have to do what we have to cope and get through this > experience the best we can. > > My heart and prayers are with you and your family. > Gerry > Wilmington, De. > Hospice > > > Hi Everyone > > Just wanted to let you all know that my mom was > admitted to hospice on Tuesday. When the nurse > came > out she told me it was an admit and not an > evaluation. > I was surprised. Apparently her doctor ordered it > that > way. We will now see the nurse weekly and the > doctor > every 12 weeks and have a home care caregiver give > her > a bath twice weekly. It has been a lot for me to > absorb all at once. I still hate the word, but > having > some help is exactually what I needed. I have not > decided about the hospital bed yet. We will > probably > go ahead and get it. It's just that we just got > her > bedroom redecorated and a new comforter etc... for > Christmas. It looks very nice. But I know the > hospital > bed will be more practical. > > We got a hospice kit with several meds included. > One > of them is Ativan. I won't be using that one. I > told > the Dr. I did not want that and he said what I > wanted > instead and I told me. He was rather surprised, > but > the nurse had already ordered the kit. He also > took my > mom off of most of her drugs. Do you think I > should > eliminate them all at once? He took her off of the > baby aspirin, Lisinopril for high blood pressure, > but > she would still be on Lopressor for her heart and > blood pressure. He removed Primidone for mild > shaking, Prozac and Aricept. I am most worried > about > the Aricept removal. Does anyone have any words of > wisdom regarding the elimination of Aricept? Mind > you > her doses are very small on all these drugs, so I > am > thinking it should not be a huge shock. He did not > explain how to eliminate these drugs. I was going > to > do one drug at a time. What do you think? He kept > her > on the Pepcid, Lopressor, Namenda, Risperdal and > Clonazepam. I know how you all feel about the > Risperdal. But at this point it has not been a > terrible drug for her. I sort of feel like if it > ain't > broke don't fix it. She is still awake at least > two to > three nights a week. All night long. Talking to > her > Lewy Friends. I have gotten to the point that I > turn > the monitor way down so my poor husband can sleep. > He > gets up at 5 a.m. and so do I most days. Today it > was > 4 a.m. since my mom did not sleep all night again. > > I still feel like I can't do this until the end > though. My son who is 19 does not want Grandma to > die > in our home. It feaks him out. Which it probably > would > if I was 19 too. My Mom never requested to die at > home. She die has a couple of times that she > didn't > want to go to a nursing home until the very end. I > hope I can honor that. I am doing all I can at > this > point. > > Also the nurse wants her in bed most of day on her > side to stay off of the bed sores. I worry about > that > also. She said she should be up only for one hour > at > meals and in bed the rest of the time. The sore is > stage 1 and stage 2 in spots, but not a really bad > one. I hope this doesn't last too long. The new > sore > on the back of her calf is due to poor circulation > and > not a pressure wound. I have soooo many creams and > diapers and gaze pads and chugs now. All free of > course. I just had bought some before she was > admitted. I feel blessed that she was accepted, > yet a > sort of scared sadness too. It's weird. > > Just wanted to update you, sorry to rattle on and > on. > > Dena in CA > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Hi Dena, I question the doctor who told you that about Aricept. We have many people admitted to our NH who are on the med or who we recommend the drug for to treat their dementia. Aricept is a med that can really help or hinder a dementia person. My Mom is on it but can only tolerate a small dose (5 mg). We tried to give her 10mg and she had frequent BM accidents and nausea and loss of appetite so we cut her down to 5 mg and stopped it all together after a week of the lower dose. We saw a dramatic increase in her confusion and ability to function without the med so we restarted it and left her on the 5 mg. She still has some bathroom accidents but we have concluded that is due to the LBD and not the med itself. Most of the doctors at our NH recommend not to stop this med all at once but to taper it by cutting dose in half for at least a week before stopping it. You could try that and if after a week or two her LBD seems worse I would put her back on the 5 mg. Not having her on it is certainly not a criteria to get her sent to a NH. Not sure where this MD got his info. I don't think he knows what he is doing! My NH works with hospice all the time and we get far more info from the nurses and case managers than the doctors. If your home nurse does not know as to speak to the director of nurses or case manager for advice. From my professional experience from the NH and my personal experience with my Mom I would not recommend taking her off but the only way to really know is to try it for a week or two and see but only after you have cut the dose in half for a week first. Hope this helps. Good luck to you and my prayers go with you. Kathy S. > > > > > > Hi Everyone > > > > > > Just wanted to let you all know that my mom was > > > admitted to hospice on Tuesday. When the nurse > > came > > > out she told me it was an admit and not an > > evaluation. > > > I was surprised. Apparently her doctor ordered it > > that > > > way. We will now see the nurse weekly and the > > doctor > > > every 12 weeks and have a home care caregiver give > > her > > > a bath twice weekly. It has been a lot for me to > > > absorb all at once. I still hate the word, but > > having > > > some help is exactually what I needed. I have not > > > decided about the hospital bed yet. We will > > probably > > > go ahead and get it. It's just that we just got > > her > > > bedroom redecorated and a new comforter etc... for > > > Christmas. It looks very nice. But I know the > > hospital > > > bed will be more practical. > > > > > > We got a hospice kit with several meds included. > > One > > > of them is Ativan. I won't be using that one. I > > told > > > the Dr. I did not want that and he said what I > > wanted > > > instead and I told me. He was rather surprised, > > but > > > the nurse had already ordered the kit. He also > > took my > > > mom off of most of her drugs. Do you think I > > should > > > eliminate them all at once? He took her off of the > > > baby aspirin, Lisinopril for high blood pressure, > > but > > > she would still be on Lopressor for her heart and > > > blood pressure. He removed Primidone for mild > > > shaking, Prozac and Aricept. I am most worried > > about > > > the Aricept removal. Does anyone have any words of > > > wisdom regarding the elimination of Aricept? Mind > > you > > > her doses are very small on all these drugs, so I > > am > > > thinking it should not be a huge shock. He did not > > > explain how to eliminate these drugs. I was going > > to > > > do one drug at a time. What do you think? He kept > > her > > > on the Pepcid, Lopressor, Namenda, Risperdal and > > > Clonazepam. I know how you all feel about the > > > Risperdal. But at this point it has not been a > > > terrible drug for her. I sort of feel like if it > > ain't > > > broke don't fix it. She is still awake at least > > two to > > > three nights a week. All night long. Talking to > > her > > > Lewy Friends. I have gotten to the point that I > > turn > > > the monitor way down so my poor husband can sleep. > > He > > > gets up at 5 a.m. and so do I most days. Today it > > was > > > 4 a.m. since my mom did not sleep all night again. > > > > > > I still feel like I can't do this until the end > > > though. My son who is 19 does not want Grandma to > > die > > > in our home. It feaks him out. Which it probably > > would > > > if I was 19 too. My Mom never requested to die at > > > home. She die has a couple of times that she > > didn't > > > want to go to a nursing home until the very end. I > > > hope I can honor that. I am doing all I can at > > this > > > point. > > > > > > Also the nurse wants her in bed most of day on her > > > side to stay off of the bed sores. I worry about > > that > > > also. She said she should be up only for one hour > > at > > > meals and in bed the rest of the time. The sore is > > > stage 1 and stage 2 in spots, but not a really bad > > > one. I hope this doesn't last too long. The new > > sore > > > on the back of her calf is due to poor circulation > > and > > > not a pressure wound. I have soooo many creams and > > > diapers and gaze pads and chugs now. All free of > > > course. I just had bought some before she was > > > admitted. I feel blessed that she was accepted, > > yet a > > > sort of scared sadness too. It's weird. > > > > > > Just wanted to update you, sorry to rattle on and > > on. > > > > > > Dena in CA > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Hi Donna Maybe it is a boy thing? I think my son just does not want to have a feeling of sadness. I just don't want him to have a life time of regrets. I have not spoken to him about this either. I know he just does not want to talk about it. Dena --- Donna Mido wrote: > Dena, > > Just a quick reply. My Boys (3)all had trouble > being around Mom even at the beginning. It was so > difficult for them. My daughter didn't have nearly > as much trouble with the whole idea. What she > always said was that she was here to " help " me. I > think the boys, who are old enough and all their own > families didn't refocus in the same kind of way. > > The boys could come and help me with the house. But > otherwise they just stayed away. I did appreciate > the things they did do. But it never occured to me > until later as we discussed it, they just didn't > know what " do with " Mom. > > 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 > > > Re: Hospice > > Hi Gerry > > I will probably wind up getting a hospital bed soon > and a air bed also. We have not received Oxygen > however, I do not think we need any either. We have > had some nice hospice staff so far. A bath lady, > nurse > and doctor. I think I will be seeing a social worker > too at some point. This is all so new to me I am not > sure if I am coming or going this week. I have > visiting angels also, so I can still get out. At > first > I loved staying home and my mom was not too bad, but > now I am getting a little stir crazy. I was a full > time secretary or should I say Office Professional > with a husband and two kids with their > boyfriend/girlfriend here most of the time. Now, my > daughter (22)moved into her grandmothers home with a > girl from her work and my son (19) lives 45 minutes > away at this girlfriends home during the week and > drives to work with her father. When he is home he > ignores his grandma. I do not blame him, he is 19, > but > it does hurt me a little to see him so afraid to try > to talk to her because it upsets him so much to see > her like this. I wish he could at least say Hello to > her. I believe that is another reason he took the > job > with his girlfriends father. So he would not have to > deal with all of this. I love him a lot and I might > be > the same at 19. He was devastate when my dad his > grandfather died at age 5. He would not believe it > for > a long time. When he was in the first grade he wrote > a > paper on his grandfathers dying. It won several > awards > in the school district. It was so precious, but I > then > realized how hard that was for him. Now he says he > very little memories of my dad. I think he just has > a > wall up so he won't get hurt again. But little does > he > know he will. > > Thank you Gerry. God bless > > Dena > > --- Gerry Deverell wrote: > > > Dean-- > > I am glad you were able to get Hospice I don't > know > > how we would have managed without them. My Dad > was > > kept on the majority of his medication including > > Aricept until a week before he died. We had > Hospice > > for 2 years. The staff became part of our family. > > > > > I don't know if you have received all of your > > initial supplies, but the one thing that Hospice > > supplied and shocked me was oxygen. We received 2 > > different types of cannisters. We only used it on > > very rare occasions. I don't know if it is > protocol > > to have oxygen in the house, but several years > prior > > to the Dx of LBD, Dad had severe anemia from > colon > > cancer for which he had surgery without any > further > > problems with his hemoglobin. > > > > When Dad's bottom was looking like it was breaking > > down, Hospice ordered a special air mattress with > > alternating pressure. We also turned him > > frequently. Towards the end, one thing was > > overlooked was his heels.. He developed black > > pressure spots on both of his heels. To prevent > > further break down, we kept his heels elevated off > > the bed, etc. I am sure they would have broken > > down, but Dad died about a week later. I am glad > > that his feet never entirely broke down because I > > understand it is painful. Dad did not need any > > additional pain. > > > > I really feel for your teenage son. It is very > > difficult for children and teens. Matter of fact, > > it is hard on everyone. My 16 year old > > grandaughter, who has real emotional problem, > would > > not come see my Dad for the last few months. She > > afraid she would have an anxiety attack. Much to > my > > surprise, when Dad died she showed up with her > > Mother at midnight, She sat with Dad and the > family > > until he died early in the morning. She did as > > much as any adults in repositioning her Great > > Grandfather and keeping him comfortable. I was so > > glad she had this last opportunity, but if she > chose > > not to be there, I would have understood. We all > > have to do what we have to cope and get through > this > > experience the best we can. > > > > My heart and prayers are with you and your family. > > Gerry > > Wilmington, De. > > Hospice > > > > > > Hi Everyone > > > > Just wanted to let you all know that my mom was > > admitted to hospice on Tuesday. When the nurse > > came > > out she told me it was an admit and not an > > evaluation. > > I was surprised. Apparently her doctor ordered > it > > that > > way. We will now see the nurse weekly and the > > doctor > > every 12 weeks and have a home care caregiver > give > > her > > a bath twice weekly. It has been a lot for me to > > absorb all at once. I still hate the word, but > > having > > some help is exactually what I needed. I have > not > > decided about the hospital bed yet. We will > > probably > > go ahead and get it. It's just that we just got > > her > > bedroom redecorated and a new comforter etc... > for > > Christmas. It looks very nice. But I know the > > hospital > > bed will be more practical. > > > > We got a hospice kit with several meds included. > > One > > of them is Ativan. I won't be using that one. I > > told > > the Dr. I did not want that and he said what I > > wanted > > instead and I told me. He was rather surprised, > > but > > the nurse had already ordered the kit. He also > > took my > > mom off of most of her drugs. Do you think I > > should > > eliminate them all at once? He took her off of > the > > baby aspirin, Lisinopril for high blood > pressure, > > but > > she would still be on Lopressor for her heart > and > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.