Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Dena- Today we reached a high of 40...even had a chance to get the truck washed. It isn't salt colored any more, well, for today anyhow. Have you met with any other caregivers? If you get a chance, please do so. It is amazing how so much of LBD is a mirrored image when comparing stories yet it is still so individual. Thinking of you today, with hugs and prayers- Sandie Des Moines, IA -- Re: Re: Hi Stevie - update > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Hi Sandie I didn't realize that they still put salt on the roads. I thought it was bad for the environment or something like that. Of course, what do I know. I have lived in So. CA my whole life. We don't even go to the MTNs in the winter. My husband who grew up in the snow hates it. I have not met with any other caregivers yet. It is so tough to get out that I rely on you guys for my support mostly. But the thought is great. It think we might have hit the high 50's today or low 60's. To me that is cold. I never opened up the house all day. But at least it was sunny and clear. Dena --- Sandie wrote: > Dena- > > Today we reached a high of 40...even had a chance to > get the truck washed. It isn't salt colored any > more, well, > for today anyhow. > > Have you met with any other caregivers? If you get > a > chance, please do so. It is amazing how so much of > LBD > is a mirrored image when comparing stories yet it is > still so individual. > > Thinking of you today, with hugs and prayers- > > Sandie > Des Moines, IA > > > > -- Re: Re: Hi Stevie - > update > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Good Morning to you also, Sandie Boy! That sounds like it would really make your car dirty. Especially the under carriage. Does it mess up the paint also? My husband grew up in Utah. So he was well acquainted with snow. When we visit it is usually in summer. He use to always go back for the deer hunt and they would get a little snow then, but not too much usually. I would go also, but stay at home with the kids usually. I am not very outdoorsy. As far as speaking with other caregivers... I do not have a group so to speak that are caregivers. I have a great family, husband, two adult kids, my aunts, and uncle, a great church family and friends. They are great listeners, and have good advise usually. The only people I know that are going through this is all of you. I don't feel neglected if that is what you mean. I am doing okay. The care and advise that I get from this group is phenomenal. I am so glad that I found this group. It has saved me more heartache than you will ever know. Today will be in the low 60's. I hope to open up the windows and front door for a little while this afternoon. I feel a little trapped if I can't get some outside air. Take Care Dena --- Sandie wrote: > Good morning Dena- > > Salt is put down on the roads here in two different > ways. > Trucks drive along with a wet mixture of salt and > other > chemicals spraying it down on the road before we > have > a winter storm...snow, ice, anything that would make > the > roads slippery. It is intended to melt the snow > from the > bottom up and it does a pretty good job. Also, > trucks > drop salt and sand along the roads on top of the > snow. > So, as all of this starts melting our vehicles are a > mess. > Under carriage up is salty and filthy. > > Also, you mentioned opening up the house, well > usually > we are able to open up the windows come April or > May. > Today the forecast is 42-45 for a high. The > meteorologist > said it is about 10 degrees above average this time > of > year. We take what we can get. > > > Where did your husband grow up around snow? > > It is so nice meeting with other caregivers. Even > to > talk on the phone and share stories is comforting > and > confirms what we are going through, or have gone > through in my case, isn't just our loved ones but > typical > of LBD. Have you had the opportunity to talk on the > phone with other caregivers? > > Take care- > > Sandie > > > -- Re: Re: Hi Stevie - > > update > > > > > > > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Hey Dena- Thanks for the continued conversation. You are so right, the vehicles do get dirty here. It can make the metal rust easily so it is a good idea to wash them as soon as a warmer day gets here. Glad you have so many supportive members of your family. I haven't been hunting in quite a while. My dad and I used to go years ago. I have hunted pheasant and rabbit, even squirrel a time or two. Never been out deer hunting but would love to go. Dad and I used to fish together as well. My youngest son and I have went fishing but didn't get out last year. As for deer, Iowa has had such a huge population lately that there was an open deer season where several thousands were shot to help get the population down a bit. It's not uncommon these days to see deer running through the city in daylight. Wishing you well, with hugs- Sandie -- Re: Re: Hi Stevie - > > update > > > > > > > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Good morning Dena- I am happy you were able to find a NH and I shall continue to send up prayers for you and your mom. Life has a way of working itself out if we allow it to, this too shall pass... Many hugs of strength for you, with prayers- Sandie Des Moines, IA dad, Merle, passed away 9-20-02 from LBD, 65 yrs old -- Re: Looking for a NH/Dena Hi Jan You are right I have just started realizing that I am not " Superwoman " I am trying to just let it go and face the fact that I can no longer do this. I think I have found a good nursing home. Patients looked well cared for, hair combed etc... The food is vegetarian since this NH is in Loma , CA. Loma is known for their large teaching hospital and their affiliation with Seventh Day Adventist. They even get mail on Sunday instead of Saturday. The NH smelled OK, not over powered with bleach and the staff looked happy to work there. I am just praying that it is a good place. Due to her stage 3 bed sores they have not accepted her yet and will evaluate her on Monday. Then they may take her on Tuesday I guess. They actually have a private room. Of course, it is more money, but I think she would appreciate that. I know I will. Otherwise, they have no female beds available. Hospice with place her in a different center for 5 days respite care, but why bother. I hate to move her twice and will the bed still be available if I wait? This whole thing is just breaking my heart. I cry and stare off into space. I feel a little sick to my stomach too. I think I will be in a better place once this is done. I just have to stop thinking about it so much. She is doing the Lewy-coma thing right now. So possible today when she snaps out of it, she will be in a better place mentally. Thank you, Jan, you have been so supportive and helpful I would hate to think where I would be with you all. Dena Mother (83) dx April 05 Takes Risperdal and Clonzapam --- Janet Colello wrote: > > Hi Dena, > PLEASE, DO NOT BEAT YOURSELF UP OVER THIS DECISION > of > putting your mother in a nh. You are a great > daughter > to your mother, she is very lucky to have you. You > have done the best that you can do. As this disease > progresses one person can not handle it alone. > Believe > me, I am in the same place as you. I am working at > getting Jim into a facility, but it has not been > easy > with Jim's daughter refusing to let go of the > assets. > As you know, I have been fighting this battle and > refuse to be forced to divorce Jim, so that he can > qualify for MediCal, as his daughter wants for him. > But now I have new direction from my attorney. > You must take care of your health Dena. Your mother > has lived a long and good life, but you still have > your life ahead of you, you are still young and > deserve to be able to live your life as a healthy > individual. As we have heard from Courage and > others, > you are not giving up caregiving for your mother. > You > will still be there for her, but now in a different > way. You will have others helping her too and you > can > enjoy the visits with her and have more quality time > to spend with her. > Please do not feel guilty. You are human, do not try > to be Super Woman. > Jim also is with Kaiser and I had to shop around > looking for facilities with Kaiser doctors. I have > chosen a facility that I believe is one of the > better > ones in the area that accepts MediCal. My attorney > gave me a list of nh in the area that is MediCal > Certified and Medicare Approved and has dementia > care > and I went shopping. > *****There > is a list of things to look for while shopping for a > good facility in the LBD Links. Click on Links. > Scroll > down to the very end to: " Looking into Long Term > Care > Facility for LO " It is called, " A Place For Mom. " > You > can find facilities in your area there and also an > advisor to help you for free. You can find the List > of > things to look for while shopping for a facility by > Clicking on: List Your Community in the upper right > hand corner, then Click on Search in the Left > Margin, > then Click on " Tips On Visiting " in the right > Margin. > Copy the List on " Tips On Visiting A Facility " and > it > will help you. Also, I added this to my list; > Earthquake Emergency Procedure and other > Emergencies. > Do they have a good plan. One place told me they get > who they can, but can't guarantee that everyone can > be > helped in an earthquake. Can you believe it?? The > place I chose had doors that close off automatically > in the hallways and each hallway has staff to help > the > people into the hallway that is Earthquake > Structured > away from windows. Look at the food trays too and > see > if it looks like slop or made to look apetizing. I > saw > some places with food that wasn't fit for pigs. > Always > visit without an appointment, so the facility can > not > be expecting you and stage looking good for you. I > saw > places where people were shoved into the hallways in > wheelchairs and left to sit there. They looked like > they were willing themselves to die. Staff did not > smile and looked only focused on the time they had > to > complete a job and ignoring the people. Their > schedule > was more important than spending time with the > people. > It gave me the feeling that the people were in the > way > of their getting the chores done. Look at how well > the > people are cared for. > While you are shopping and looking around and still > caring for your mom. A tip that I got from the > hospital nurses is put a loose sheet on top of the > fitted sheet on the bed and when you need to scoot > your mom up, pull up on the corners of the sheet at > the head of the bed and it will scoot your mom up. > Maybe you can move your mom's bed down a little, so > you can stand at the head of the bed, unless she has > a > headboard. The same goes to change her. Have her lay > on a loose sheet on top of the bed and roll her from > side to side by taking the sides of the sheet and > roll > her inward to the center and then roll her back to > the > other side with the opposite side of the sheet. Hold > the sheet sides up and it will roll her inward and > back again from the other side. Maybe this can help > you. > You are in my prayers Dena. I am worried about your > health. Keep Care and Keep Venting. Venting is a > good > release. We are all here for you.....Huge Hugs, Jan > > > > > --- Dena LEAVITT wrote: > > > Hi Everyone > > > > I have decided that it is time to find a nursing > > home > > for my Mom. I called several today and found that > > they > > would not expect her since she had Kaiser Ins. and > > was > > on Kaiser Hospice. It was rather frustrating. So I > > called the Hospice SW and he gave me several that > > Kaiser does contract with. Tomorrow I start the > > search. Please be praying that I find the right > one > > the first time and do not have to change her over > > and > > over. > > > > My mom is now bedridden. I have been so frustrated > > because I cannot get the DAMN!! diaper on her > right. > > She is dead weight and does not roll well and it > is > > soooo hard with just one person. I ripped three > > diapers trying and went back to the pull up type > of > > diaper and believe it or not that worked better. > > Also > > she gets scrunched down in the bed and as one > person > > again I cannot move her up without being at the > head > > of the bed which is really almost impossible. So I > > get > > her up to standing and try to get a side step > going > > and move her up which is way too hard on her. I > > cried > > all day yesterday with frustration. I just give > up. > > Maybe I am not a strong enough person, maybe I > just > > don't want to do this anymore. I don't know, but I > > do > > know that I am having anxiety attacks in the > middle > > of > > the night, I can't eat and I feel sick in general. > I > > guess that means it is time. I have done the > > absolute > > best I can for 10 months. I have changed my life > for > > my mom, by quitting my job and being her full time > > caregiver. I would do it all again in a heart > beat. > > I > > am not a quitter and this REALLY hurts me to give > > up. > > At least I feel like I am giving up. Sorry Mom!! > > Being > > bedridden is really harder than you think it will > > be. > > So Kaiser will give me 5 days respite and then > > transfer her to a facility or back home. I will > let > > them know next week. I just ask that you all pray > > for > > me and that I make the right choice. Thanks. > > > > Dena > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Hi Sandie Thank you for your continued prayers. I couldn't go through this without all your support and prayers. Dena Very Cold night. Frost on the roof tops this morning. However, high is suppose to be 63 and low 38. --- Sandie wrote: > Good morning Dena- > > I am happy you were able to find a NH and I shall > continue to send up prayers for you and your mom. > Life has a way of working itself out if we allow it > to, > this too shall pass... > > Many hugs of strength for you, with prayers- > > Sandie > Des Moines, IA > dad, Merle, passed away 9-20-02 from LBD, 65 yrs old > > > -- Re: Looking for a NH/Dena > > Hi Jan > > You are right I have just started realizing that I > am > not " Superwoman " I am trying to just let it go and > face the fact that I can no longer do this. > > I think I have found a good nursing home. Patients > looked well cared for, hair combed etc... The food > is > vegetarian since this NH is in Loma , CA. Loma > is known for their large teaching hospital and > their affiliation with Seventh Day Adventist. They > even get mail on Sunday instead of Saturday. The NH > smelled OK, not over powered with bleach and the > staff > looked happy to work there. I am just praying that > it > is a good place. > > Due to her stage 3 bed sores they have not accepted > her yet and will evaluate her on Monday. Then they > may > take her on Tuesday I guess. They actually have a > private room. Of course, it is more money, but I > think > she would appreciate that. I know I will. Otherwise, > they have no female beds available. > > Hospice with place her in a different center for 5 > days respite care, but why bother. I hate to move > her > twice and will the bed still be available if I wait? > > This whole thing is just breaking my heart. I cry > and > stare off into space. I feel a little sick to my > stomach too. I think I will be in a better place > once > this is done. I just have to stop thinking about it > so > much. > > She is doing the Lewy-coma thing right now. So > possible today when she snaps out of it, she will be > in a better place mentally. > > Thank you, Jan, you have been so supportive and > helpful I would hate to think where I would be with > you all. > > Dena > Mother (83) dx April 05 Takes Risperdal and > Clonzapam > > --- Janet Colello wrote: > > > > > Hi Dena, > > PLEASE, DO NOT BEAT YOURSELF UP OVER THIS DECISION > > of > > putting your mother in a nh. You are a great > > daughter > > to your mother, she is very lucky to have you. You > > have done the best that you can do. As this > disease > > progresses one person can not handle it alone. > > Believe > > me, I am in the same place as you. I am working at > > getting Jim into a facility, but it has not been > > easy > > with Jim's daughter refusing to let go of the > > assets. > > As you know, I have been fighting this battle and > > refuse to be forced to divorce Jim, so that he can > > qualify for MediCal, as his daughter wants for > him. > > But now I have new direction from my attorney. > > You must take care of your health Dena. Your > mother > > has lived a long and good life, but you still have > > your life ahead of you, you are still young and > > deserve to be able to live your life as a healthy > > individual. As we have heard from Courage and > > others, > > you are not giving up caregiving for your mother. > > You > > will still be there for her, but now in a > different > > way. You will have others helping her too and you > > can > > enjoy the visits with her and have more quality > time > > to spend with her. > > Please do not feel guilty. You are human, do not > try > > to be Super Woman. > > Jim also is with Kaiser and I had to shop around > > looking for facilities with Kaiser doctors. I have > > chosen a facility that I believe is one of the > > better > > ones in the area that accepts MediCal. My attorney > > gave me a list of nh in the area that is MediCal > > Certified and Medicare Approved and has dementia > > care > > and I went shopping. > > *****There > > is a list of things to look for while shopping for > a > > good facility in the LBD Links. Click on Links. > > Scroll > > down to the very end to: " Looking into Long Term > > Care > > Facility for LO " It is called, " A Place For Mom. " > > You > > can find facilities in your area there and also an > > advisor to help you for free. You can find the > List > > of > > things to look for while shopping for a facility > by > > Clicking on: List Your Community in the upper > right > > hand corner, then Click on Search in the Left > > Margin, > > then Click on " Tips On Visiting " in the right > > Margin. > > Copy the List on " Tips On Visiting A Facility " > and > > it > > will help you. Also, I added this to my list; > > Earthquake Emergency Procedure and other > > Emergencies. > > Do they have a good plan. One place told me they > get > > who they can, but can't guarantee that everyone > can > > be > > helped in an earthquake. Can you believe it?? The > > place I chose had doors that close off > automatically > > in the hallways and each hallway has staff to help > > the > > people into the hallway that is Earthquake > > Structured > > away from windows. Look at the food trays too and > > see > > if it looks like slop or made to look apetizing. I > > saw > > some places with food that wasn't fit for pigs. > > Always > > visit without an appointment, so the facility can > > not > > be expecting you and stage looking good for you. I > > saw > > places where people were shoved into the hallways > in > > wheelchairs and left to sit there. They looked > like > > they were willing themselves to die. Staff did not > > smile and looked only focused on the time they had > > to > > complete a job and ignoring the people. Their > > schedule > > was more important than spending time with the > > people. > > It gave me the feeling that the people were in the > > way > > of their getting the chores done. Look at how well > > the > > people are cared for. > > While you are shopping and looking around and > still > > caring for your mom. A tip that I got from the > > hospital nurses is put a loose sheet on top of the > > fitted sheet on the bed and when you need to scoot > > your mom up, pull up on the corners of the sheet > at > > the head of the bed and it will scoot your mom > up. > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Hi Dena- I am very proud of your strength and for the decision you have made. Your words are comforting in this part of your journey. Best wishes, many hugs, and prayers for you and your mom- Sandie and Des Moines, IA dad, Merle, passed away 9-20-02, 65 yrs old mom, Jo, living in New Zealand, will be 77 this month -- Placing my Mom in NH I know that I am not giving up now. And will just be caring for her at a new facility. My caregiving skills will just be on a different level now. I will still see her every day or almost and be very active in her care. It has been very tough to get to this point, but that I am here, I feel at peace. Just wanted to share this with you all. Thank you for helping me get to this place. Gratefully Dena Mother (83)dx April 05 Risperdal & Clonzapam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Hi Sandie It wasn't an easy road, but I have arrived. My mom is really not doing well. I will be glad to get her settled in. Thanks for your hugs and prayers. Dena --- Sandie wrote: > Hi Dena- > > I am very proud of your strength and for the > decision > you have made. Your words are comforting in this > part of your journey. > > Best wishes, many hugs, and prayers for you and > your mom- > > Sandie and > Des Moines, IA > dad, Merle, passed away 9-20-02, 65 yrs old > mom, Jo, living in New Zealand, will be 77 this > month > > -- Placing my Mom in NH > > I know that I am not giving up now. And will just be > caring for her at a new facility. My caregiving > skills > will just be on a different level now. I will still > see her every day or almost and be very active in > her > care. > It has been very tough to get to this point, but > that > I am here, I feel at peace. Just wanted to share > this > with you all. Thank you for helping me get to this > place. > > Gratefully > > Dena Mother (83)dx April 05 Risperdal & Clonzapam > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Dena, My Dad did the same thing during his last couple of months. Many times I would come to visit him and he would just be " there " physically but with no eye contact or acknowledgement that I was there. It's hard to see our LO like that. Each time I saw him I treated it as if it would be the last time. However, the next time I would be at his door of the NH I would pray that he would be alert, even if just for a moment. You mentioned in your e-mail that your mom has only been in the NH for two weeks. Could she be in an adjustment period? I know Dad was very upset with being put in the NH and for awhile it was hard to get him to talk to us. I think he just wanted to die and get it over with until he became somewhat adjusted. FYI, Dad was on no medication except a stool softener his last 6 months (total time he was in the NH) as he was truly at the end stage. I know this doesn't shed much light on your situation but I wanted to let you know that someone out understands a bit about how you feel. Sisters in Lewyville, Dena LEAVITT wrote: Hi I did not give you the whole story I guess. My mom is not on any drugs now, expect Lopressor for her heart and b/p if need be. So her non responsiveness is not drug related at this point. I do know what you mean about over medication through. I went through that many times before I found this group. When she really changed was when the Hospice Dr took her off of Aricept, Prozac, Namenda, Lisinipril. In about 10 days she started to make no sense at all. She would try to tell me something, but I could not understand her and she could not understand me. It was like we were speaking two different languages. After 3 weeks or so, she became content in her own little world. She would chatter to her Lewy-friends and just sort of cut out everything else. Now 2 1/2 months later she rarely talks or makes eye contact. I guess I probably will never know why this happened. I just felt that maybe all those drugs for 7 or so months could have made her like this or is this just another phase of this disease. Dena --- wrote: > Dena, > > If you saw my posts, my mother was reaching the > stage your mother > sounds like she is in. They put her in Hospice also > and had all her > meds increased over a while. She turned into a > zombie, leaning half > out of the chair or in bed all the time, with her > eyes shut, > couldn't carry on any conversation, etc, and I > finally had them > adjust all the meds to the lowest dose possible and > stop some of > them. She has changed so much since that occurred > and is the best > she's been in 2 or more years. > > I would not want to suggest that this could happen > to everyone - I > feel very blessed - and they might be in totally > different stages of > the disease. However, I just feel that so many > problems are caused > by the drugs they are using to try to help, and > definitely when > there are many and the combos might not be good, > lots of > interactions and lots of adverse symptoms and lots > of wierd things > that happen with LBD and PD and the neuroleptic > syndrome too. > > At one time they did have my mom on Prozac and two > anti-anxiety > drugs, one being Clonopin, and she turned into a > zombie then too, so > we stopped all those but the Prozac and she turned > around, that was > several years ago. It is just so hard to tell what > the meds might > do. I also questioned the doctor that they also > need to know that > their kidney and liver function is good, because if > not, they are > not able to metabolize the drugs, so they are just > accumulating to > overdose level in their system. I made them check > her blood too, to > see if that were true. She was okay in that area, > so I know the > drugs were just too much. > > Anyway, don't blame yourself for any of this - it is > up to the > doctors and the staff at nh to know all this - it's > unfortunate not > all of them do. We should not have to be the ones > to constantly > suggest care or lack thereof, but I have found that > I've had to do > it constantly - but I'm a nurse, so it is easier for > me. Sometimes > it actually helps to put on the nurse cap > figuratively, take myself > out of the daughter role, whose heart is breaking, > and become > medical. Probably part of my defense mechanisms > about this. > > Just never be afraid to push for what you think is > in the best > interest of your mom. Anything is worth trying > once. > > > > > > > > Hi Everyone > > > > I have just finished reading many days worth of > posts. > > I have been away from my computer for quite a > while > > and just wanted to bring you up to date on my mom. > > > > My Mom was moved to the NH two weeks ago today. > She is > > actually eating pretty well now. They are giving > her > > puree foods which are really hard for me to > stomach, > > yet I have been feeding her as much as she will > eat. > > She still does not like to drink much which is a > > problem. > > > > The Hospice nurse believes she may have a UTI, but > no > > test was done. She is however, being treated for > an > > infection. She has a catheter now also. > > > > I have read all the posts about lying and I > started > > out trying to always tell the truth and be honest > with > > my mom. However, it would upset her and she would > cry > > and get agitated, so I began to lie to her. But I > soon > > realized I was not lying to her, just going along > with > > her hallucination. She would ask me how old the > > children were, when no one was home, but myself > and > > her and I would say 5 and 7. That would satisfy > her. > > It was so much easier for us both and I got over > the > > fact that I felt like I was lying to my mother and > she > > would find out and be mad at me. She never knew > and it > > made life much, much easier for us all. > > > > Now, I just wish I had one of those days back. My > > mother no longer responds to 98% of what you say > to > > her. She once in a blue moon will say Hello, if > you > > say hello first, but mostly she does not even make > eye > > contact with me. I have not noticed others saying > that > > this is what has happened to their LO's. It makes > me > > think that being on the Risperdal for months has > just > > destroyed her brain. She is practically a > vegetable > > now. Her only response is to pain. I sit at the NH > for > > hours and get nothing from her all day long. I > battle > > in my own head about not stopping the medications > > sooner. What do the rest of you think? Could this > be > > medication or is it just the progression of the > > insidious disease. She is in the forever end > stages of > > LBD. She started with cognitive problems, then on > to > > hallucinations and finally PD symptoms. She took > > Aricept for 18 months. In May of 2005 she began > > Risperdal, Clonazapam and Namenda and Prozac. She > > continued on them all until Jan 2006. As I > complained > > about the Risperdal and asked repeatedly for the > > Seroquel I was told that the Risperdal was working > so > > why change it. I went along with that Philosophy. > now > > I think I did the wrong thing. The Hospice Dr. > will > > not use Seroquel now as it is too expensive and > > Medicare will not pay for it. I don't think it > would > > do any good anyway now. She is just gone. Her body > > lives on and her mind has just evaporated. It is > the > > saddest thing to watch. She was very intelligent. > She > > had an almost photographic memory. My son has > > inherited that ability now. > > > > If anyone has a comment on what they think I would > > love to here from you. > > > > Dena > > > > Mother (83) dx April 2005 with LBD > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Dena, I am not surpised by you moms change when the hospice stopped the drugs you listed. Acetyl Choline is in short supply in LBD/PDD. The drug Aricept boost Acetyl Choline levels. Taking her off suddently will many times cause a profound mental change. Some other drugs such as Vesicare for urinary incontence need to be approached carefully as it lowers AcetylCholine in the brain having a similar effect. Also, Namenda appear to be very effective so as your mothers conditon progressed the Namenda could have really been helping her mask the progress. Best wishes to you and your LO's. -Rick > > > > > > Hi Everyone > > > > > > I have just finished reading many days worth of > > posts. > > > I have been away from my computer for quite a > > while > > > and just wanted to bring you up to date on my mom. > > > > > > My Mom was moved to the NH two weeks ago today. > > She is > > > actually eating pretty well now. They are giving > > her > > > puree foods which are really hard for me to > > stomach, > > > yet I have been feeding her as much as she will > > eat. > > > She still does not like to drink much which is a > > > problem. > > > > > > The Hospice nurse believes she may have a UTI, but > > no > > > test was done. She is however, being treated for > > an > > > infection. She has a catheter now also. > > > > > > I have read all the posts about lying and I > > started > > > out trying to always tell the truth and be honest > > with > > > my mom. However, it would upset her and she would > > cry > > > and get agitated, so I began to lie to her. But I > > soon > > > realized I was not lying to her, just going along > > with > > > her hallucination. She would ask me how old the > > > children were, when no one was home, but myself > > and > > > her and I would say 5 and 7. That would satisfy > > her. > > > It was so much easier for us both and I got over > > the > > > fact that I felt like I was lying to my mother and > > she > > > would find out and be mad at me. She never knew > > and it > > > made life much, much easier for us all. > > > > > > Now, I just wish I had one of those days back. My > > > mother no longer responds to 98% of what you say > > to > > > her. She once in a blue moon will say Hello, if > > you > > > say hello first, but mostly she does not even make > > eye > > > contact with me. I have not noticed others saying > > that > > > this is what has happened to their LO's. It makes > > me > > > think that being on the Risperdal for months has > > just > > > destroyed her brain. She is practically a > > vegetable > > > now. Her only response is to pain. I sit at the NH > > for > > > hours and get nothing from her all day long. I > > battle > > > in my own head about not stopping the medications > > > sooner. What do the rest of you think? Could this > > be > > > medication or is it just the progression of the > > > insidious disease. She is in the forever end > > stages of > > > LBD. She started with cognitive problems, then on > > to > > > hallucinations and finally PD symptoms. She took > > > Aricept for 18 months. In May of 2005 she began > > > Risperdal, Clonazapam and Namenda and Prozac. She > > > continued on them all until Jan 2006. As I > > complained > > > about the Risperdal and asked repeatedly for the > > > Seroquel I was told that the Risperdal was working > > so > > > why change it. I went along with that Philosophy. > > now > > > I think I did the wrong thing. The Hospice Dr. > > will > > > not use Seroquel now as it is too expensive and > > > Medicare will not pay for it. I don't think it > > would > > > do any good anyway now. She is just gone. Her body > > > lives on and her mind has just evaporated. It is > > the > > > saddest thing to watch. She was very intelligent. > > She > > > had an almost photographic memory. My son has > > > inherited that ability now. > > > > > > If anyone has a comment on what they think I would > > > love to here from you. > > > > > > Dena > > > > > > Mother (83) dx April 2005 with LBD > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Hi na Thanks for your reply. The thought that she may be getting adjusted had not entered my mind, but you could be correct. I know at first she seemed much more agitated than she was at home. Probably, due to the noise and confusion vs. at home was quiet and fairly peaceful. I do pray for a peaceful ending, but I am grateful for every day she is here. It is hard to be in two places at once, but my mind wants her at peace and comfortable and free from the disease and my heart wants my mom with me for as long as possible. Thank you for your insight na. It is great to have a sister in Lewyville. Dena --- na McNamara wrote: > Dena, > My Dad did the same thing during his last couple > of months. Many times I would come to visit him and > he would just be " there " physically but with no eye > contact or acknowledgement that I was there. It's > hard to see our LO like that. Each time I saw him I > treated it as if it would be the last time. > However, the next time I would be at his door of the > NH I would pray that he would be alert, even if just > for a moment. > > You mentioned in your e-mail that your mom has > only been in the NH for two weeks. Could she be in > an adjustment period? I know Dad was very upset > with being put in the NH and for awhile it was hard > to get him to talk to us. I think he just wanted to > die and get it over with until he became somewhat > adjusted. > > FYI, Dad was on no medication except a stool > softener his last 6 months (total time he was in the > NH) as he was truly at the end stage. > > I know this doesn't shed much light on your > situation but I wanted to let you know that someone > out understands a bit about how you feel. > > Sisters in Lewyville, > > > Dena LEAVITT wrote: > Hi > > I did not give you the whole story I guess. My mom > is > not on any drugs now, expect Lopressor for her heart > and b/p if need be. So her non responsiveness is not > drug related at this point. I do know what you mean > about over medication through. I went through that > many times before I found this group. > > When she really changed was when the Hospice Dr took > her off of Aricept, Prozac, Namenda, Lisinipril. In > about 10 days she started to make no sense at all. > She > would try to tell me something, but I could not > understand her and she could not understand me. It > was > like we were speaking two different languages. After > 3 > weeks or so, she became content in her own little > world. She would chatter to her Lewy-friends and > just > sort of cut out everything else. Now 2 1/2 months > later she rarely talks or makes eye contact. I guess > I > probably will never know why this happened. I just > felt that maybe all those drugs for 7 or so months > could have made her like this or is this just > another > phase of this disease. > > Dena > > --- wrote: > > > Dena, > > > > If you saw my posts, my mother was reaching the > > stage your mother > > sounds like she is in. They put her in Hospice > also > > and had all her > > meds increased over a while. She turned into a > > zombie, leaning half > > out of the chair or in bed all the time, with her > > eyes shut, > > couldn't carry on any conversation, etc, and I > > finally had them > > adjust all the meds to the lowest dose possible > and > > stop some of > > them. She has changed so much since that > occurred > > and is the best > > she's been in 2 or more years. > > > > I would not want to suggest that this could happen > > to everyone - I > > feel very blessed - and they might be in totally > > different stages of > > the disease. However, I just feel that so many > > problems are caused > > by the drugs they are using to try to help, and > > definitely when > > there are many and the combos might not be good, > > lots of > > interactions and lots of adverse symptoms and lots > > of wierd things > > that happen with LBD and PD and the neuroleptic > > syndrome too. > > > > At one time they did have my mom on Prozac and two > > anti-anxiety > > drugs, one being Clonopin, and she turned into a > > zombie then too, so > > we stopped all those but the Prozac and she turned > > around, that was > > several years ago. It is just so hard to tell > what > > the meds might > > do. I also questioned the doctor that they also > > need to know that > > their kidney and liver function is good, because > if > > not, they are > > not able to metabolize the drugs, so they are just > > accumulating to > > overdose level in their system. I made them check > > her blood too, to > > see if that were true. She was okay in that area, > > so I know the > > drugs were just too much. > > > > Anyway, don't blame yourself for any of this - it > is > > up to the > > doctors and the staff at nh to know all this - > it's > > unfortunate not > > all of them do. We should not have to be the ones > > to constantly > > suggest care or lack thereof, but I have found > that > > I've had to do > > it constantly - but I'm a nurse, so it is easier > for > > me. Sometimes > > it actually helps to put on the nurse cap > > figuratively, take myself > > out of the daughter role, whose heart is breaking, > > and become > > medical. Probably part of my defense mechanisms > > about this. > > > > Just never be afraid to push for what you think is > > in the best > > interest of your mom. Anything is worth trying > > once. > > > > > > > > > > > > > > Hi Everyone > > > > > > I have just finished reading many days worth of > > posts. > > > I have been away from my computer for quite a > > while > > > and just wanted to bring you up to date on my > mom. > > > > > > My Mom was moved to the NH two weeks ago today. > > She is > > > actually eating pretty well now. They are giving > > her > > > puree foods which are really hard for me to > > stomach, > > > yet I have been feeding her as much as she will > > eat. > > > She still does not like to drink much which is a > > > problem. > > > > > > The Hospice nurse believes she may have a UTI, > but > > no > > > test was done. She is however, being treated for > > an > > > infection. She has a catheter now also. > > > > > > I have read all the posts about lying and I > > started > > > out trying to always tell the truth and be > honest > > with > > > my mom. However, it would upset her and she > would > > cry > > > and get agitated, so I began to lie to her. But > I > > soon > > > realized I was not lying to her, just going > along > > with > > > her hallucination. She would ask me how old the > > > children were, when no one was home, but myself > > and > > > her and I would say 5 and 7. That would satisfy > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 do pray for a peaceful ending, but I am grateful for every day she is here. It is hard to be in two places at once, but my mind wants her at peace and comfortable and free from the disease and my heart wants my mom with me for as long as possible I FEEL THE SAME WAY ME TOO! MIDGE Dena LEAVITT wrote: Hi na Thanks for your reply. The thought that she may be getting adjusted had not entered my mind, but you could be correct. I know at first she seemed much more agitated than she was at home. Probably, due to the noise and confusion vs. at home was quiet and fairly peaceful. I do pray for a peaceful ending, but I am grateful for every day she is here. It is hard to be in two places at once, but my mind wants her at peace and comfortable and free from the disease and my heart wants my mom with me for as long as possible. Thank you for your insight na. It is great to have a sister in Lewyville. Dena --- na McNamara wrote: > Dena, > My Dad did the same thing during his last couple > of months. Many times I would come to visit him and > he would just be " there " physically but with no eye > contact or acknowledgement that I was there. It's > hard to see our LO like that. Each time I saw him I > treated it as if it would be the last time. > However, the next time I would be at his door of the > NH I would pray that he would be alert, even if just > for a moment. > > You mentioned in your e-mail that your mom has > only been in the NH for two weeks. Could she be in > an adjustment period? I know Dad was very upset > with being put in the NH and for awhile it was hard > to get him to talk to us. I think he just wanted to > die and get it over with until he became somewhat > adjusted. > > FYI, Dad was on no medication except a stool > softener his last 6 months (total time he was in the > NH) as he was truly at the end stage. > > I know this doesn't shed much light on your > situation but I wanted to let you know that someone > out understands a bit about how you feel. > > Sisters in Lewyville, > > > Dena LEAVITT wrote: > Hi > > I did not give you the whole story I guess. My mom > is > not on any drugs now, expect Lopressor for her heart > and b/p if need be. So her non responsiveness is not > drug related at this point. I do know what you mean > about over medication through. I went through that > many times before I found this group. > > When she really changed was when the Hospice Dr took > her off of Aricept, Prozac, Namenda, Lisinipril. In > about 10 days she started to make no sense at all. > She > would try to tell me something, but I could not > understand her and she could not understand me. It > was > like we were speaking two different languages. After > 3 > weeks or so, she became content in her own little > world. She would chatter to her Lewy-friends and > just > sort of cut out everything else. Now 2 1/2 months > later she rarely talks or makes eye contact. I guess > I > probably will never know why this happened. I just > felt that maybe all those drugs for 7 or so months > could have made her like this or is this just > another > phase of this disease. > > Dena > > --- wrote: > > > Dena, > > > > If you saw my posts, my mother was reaching the > > stage your mother > > sounds like she is in. They put her in Hospice > also > > and had all her > > meds increased over a while. She turned into a > > zombie, leaning half > > out of the chair or in bed all the time, with her > > eyes shut, > > couldn't carry on any conversation, etc, and I > > finally had them > > adjust all the meds to the lowest dose possible > and > > stop some of > > them. She has changed so much since that > occurred > > and is the best > > she's been in 2 or more years. > > > > I would not want to suggest that this could happen > > to everyone - I > > feel very blessed - and they might be in totally > > different stages of > > the disease. However, I just feel that so many > > problems are caused > > by the drugs they are using to try to help, and > > definitely when > > there are many and the combos might not be good, > > lots of > > interactions and lots of adverse symptoms and lots > > of wierd things > > that happen with LBD and PD and the neuroleptic > > syndrome too. > > > > At one time they did have my mom on Prozac and two > > anti-anxiety > > drugs, one being Clonopin, and she turned into a > > zombie then too, so > > we stopped all those but the Prozac and she turned > > around, that was > > several years ago. It is just so hard to tell > what > > the meds might > > do. I also questioned the doctor that they also > > need to know that > > their kidney and liver function is good, because > if > > not, they are > > not able to metabolize the drugs, so they are just > > accumulating to > > overdose level in their system. I made them check > > her blood too, to > > see if that were true. She was okay in that area, > > so I know the > > drugs were just too much. > > > > Anyway, don't blame yourself for any of this - it > is > > up to the > > doctors and the staff at nh to know all this - > it's > > unfortunate not > > all of them do. We should not have to be the ones > > to constantly > > suggest care or lack thereof, but I have found > that > > I've had to do > > it constantly - but I'm a nurse, so it is easier > for > > me. Sometimes > > it actually helps to put on the nurse cap > > figuratively, take myself > > out of the daughter role, whose heart is breaking, > > and become > > medical. Probably part of my defense mechanisms > > about this. > > > > Just never be afraid to push for what you think is > > in the best > > interest of your mom. Anything is worth trying > > once. > > > > > > > > > > > > > > Hi Everyone > > > > > > I have just finished reading many days worth of > > posts. > > > I have been away from my computer for quite a > > while > > > and just wanted to bring you up to date on my > mom. > > > > > > My Mom was moved to the NH two weeks ago today. > > She is > > > actually eating pretty well now. They are giving > > her > > > puree foods which are really hard for me to > > stomach, > > > yet I have been feeding her as much as she will > > eat. > > > She still does not like to drink much which is a > > > problem. > > > > > > The Hospice nurse believes she may have a UTI, > but > > no > > > test was done. She is however, being treated for > > an > > > infection. She has a catheter now also. > > > > > > I have read all the posts about lying and I > > started > > > out trying to always tell the truth and be > honest > > with > > > my mom. However, it would upset her and she > would > > cry > > > and get agitated, so I began to lie to her. But > I > > soon > > > realized I was not lying to her, just going > along > > with > > > her hallucination. She would ask me how old the > > > children were, when no one was home, but myself > > and > > > her and I would say 5 and 7. That would satisfy > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 ME TOO WITH MY HUSBAND MIDGE AND DENA. I found out when Jim went in for a UTI and they were running tests to see what was going on with him they discovered an aneurism, they said they could repair it with surgery, but I turned it down. Why save him from the fates of that to face a worse death. (Also the surgery probably would send him over the edge too from the anesthesia) I pray everyday that the aneurism would take him before the LBD and he would go fast and peacefully without suffering. On the other hand I want to keep him with me. Like you say it's a battle within me. Jan --- MIDGE GREER wrote: > do pray for a peaceful ending, but I am > grateful for every day she is here. It is hard to be > in two places at once, but my mind wants her at > peace > and comfortable and free from the disease and my > heart > wants my mom with me for as long as possible > > > I FEEL THE SAME WAY ME TOO! MIDGE > > > > > Dena LEAVITT wrote: > Hi na > > Thanks for your reply. The thought that she may be > getting adjusted had not entered my mind, but you > could be correct. I know at first she seemed much > more > agitated than she was at home. Probably, due to the > noise and confusion vs. at home was quiet and fairly > peaceful. I do pray for a peaceful ending, but I am > grateful for every day she is here. It is hard to be > in two places at once, but my mind wants her at > peace > and comfortable and free from the disease and my > heart > wants my mom with me for as long as possible. > > Thank you for your insight na. It is great to > have > a sister in Lewyville. > > Dena > > --- na McNamara > wrote: > > > Dena, > > My Dad did the same thing during his last couple > > of months. Many times I would come to visit him > and > > he would just be " there " physically but with no > eye > > contact or acknowledgement that I was there. It's > > hard to see our LO like that. Each time I saw him > I > > treated it as if it would be the last time. > > However, the next time I would be at his door of > the > > NH I would pray that he would be alert, even if > just > > for a moment. > > > > You mentioned in your e-mail that your mom has > > only been in the NH for two weeks. Could she be > in > > an adjustment period? I know Dad was very upset > > with being put in the NH and for awhile it was > hard > > to get him to talk to us. I think he just wanted > to > > die and get it over with until he became somewhat > > adjusted. > > > > FYI, Dad was on no medication except a stool > > softener his last 6 months (total time he was in > the > > NH) as he was truly at the end stage. > > > > I know this doesn't shed much light on your > > situation but I wanted to let you know that > someone > > out understands a bit about how you feel. > > > > Sisters in Lewyville, > > > > > > Dena LEAVITT wrote: > > Hi > > > > I did not give you the whole story I guess. My mom > > is > > not on any drugs now, expect Lopressor for her > heart > > and b/p if need be. So her non responsiveness is > not > > drug related at this point. I do know what you > mean > > about over medication through. I went through that > > many times before I found this group. > > > > When she really changed was when the Hospice Dr > took > > her off of Aricept, Prozac, Namenda, Lisinipril. > In > > about 10 days she started to make no sense at all. > > She > > would try to tell me something, but I could not > > understand her and she could not understand me. It > > was > > like we were speaking two different languages. > After > > 3 > > weeks or so, she became content in her own little > > world. She would chatter to her Lewy-friends and > > just > > sort of cut out everything else. Now 2 1/2 months > > later she rarely talks or makes eye contact. I > guess > > I > > probably will never know why this happened. I just > > felt that maybe all those drugs for 7 or so months > > could have made her like this or is this just > > another > > phase of this disease. > > > > Dena > > > > --- wrote: > > > > > Dena, > > > > > > If you saw my posts, my mother was reaching the > > > stage your mother > > > sounds like she is in. They put her in Hospice > > also > > > and had all her > > > meds increased over a while. She turned into a > > > zombie, leaning half > > > out of the chair or in bed all the time, with > her > > > eyes shut, > > > couldn't carry on any conversation, etc, and I > > > finally had them > > > adjust all the meds to the lowest dose possible > > and > > > stop some of > > > them. She has changed so much since that > > occurred > > > and is the best > > > she's been in 2 or more years. > > > > > > I would not want to suggest that this could > happen > > > to everyone - I > > > feel very blessed - and they might be in totally > > > different stages of > > > the disease. However, I just feel that so many > > > problems are caused > > > by the drugs they are using to try to help, and > > > definitely when > > > there are many and the combos might not be good, > > > lots of > > > interactions and lots of adverse symptoms and > lots > > > of wierd things > > > that happen with LBD and PD and the neuroleptic > > > syndrome too. > > > > > > At one time they did have my mom on Prozac and > two > > > anti-anxiety > > > drugs, one being Clonopin, and she turned into a > > > zombie then too, so > > > we stopped all those but the Prozac and she > turned > > > around, that was > > > several years ago. It is just so hard to tell > > what > > > the meds might > > > do. I also questioned the doctor that they also > > > need to know that > > > their kidney and liver function is good, because > > if > > > not, they are > > > not able to metabolize the drugs, so they are > just > > > accumulating to > > > overdose level in their system. I made them > check > > > her blood too, to > > > see if that were true. She was okay in that > area, > > > so I know the > > > drugs were just too much. > > > > > > Anyway, don't blame yourself for any of this - > it > > is > > > up to the > > > doctors and the staff at nh to know all this - > > it's > > > unfortunate not > > > all of them do. We should not have to be the > ones > > > to constantly > > > suggest care or lack thereof, but I have found > > that > === message truncated === Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay Area, California __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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