Guest guest Posted March 1, 2007 Report Share Posted March 1, 2007 My first thought, Irene, is that he has a touch of Alzheimer's, also. LBD patients often do. Alzheimer's patients don't know it, and do not think there is anything wrong with them. My sister has never acknowledged that she has a problem. I do not know enough about Parkinson's to comment one way or the other, as to whether they think nothing is wrong. One of my husband's fine qualities was wanting to know everything he could read about LBD, and that along with a loving list also helped him give up his car Keys. He has been very cooperative since diagnosis, and knowledge. I count my blessing, believe me. Love so much, Imogene In a message dated 3/1/2007 10:10:13 AM Central Standard Time, irenevictoria.manias@... writes: Hi, I'm a bit teary at the moment probably due to frustration and being unable to make headway with taking care of my husband in that we are on a wait list, about another month to go, to get into the Alzheimer Evaluation Unit here at our local hospital where he will be evaluated and given medication. His siblings are making me feel that I am not doing enough and that I should take him here, there and everywhere and I just feel like following the lead I started with our neurologist with whom I am confident. Whew, that was long winded. When your LO was diagnosed did you rush from doctors to hospitals in search of I don't know what? Another serious problem that is tormenting me is that my husband never speaks about his problem, Parkinsonism and LBD and I truly don't know if he is aware of what he has. He never asks, sits next to me at the neurologist where I do the talking. I deepdown don't feel this is right and that he should know but a psychologist friend told me all it would do would be to upset him more, agitate him. Does anyone have an opinion? I am really feeling like screaming! Irene <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2007 Report Share Posted March 1, 2007 Well, I didn't mean to convey that he didn't except it, Irene. My sister never did know it, and if anyone tried to tell her, she didn't believe them. She didn't know it, so why should she except such outlandish talk. At least that is the way she felt. After a while it is too late to convey much of anything to them. Talking with, and to, them has to be early enough in the disease. Otherwise do like said she did. That is when it is especially important to make every good moment count. I really appreciated her outlook and help. She is one of our moderators, and Donna R. is the other. They each do a fine job. Donna helps us by watching the list, and is a great organizer, and is putting together our LIST of important information to help us as caregivers. They are both greatly appreciated by all of us. Imogene In a message dated 3/1/2007 3:56:48 PM Central Standard Time, irenevictoria.manias@... writes: Imogene, it's not that he doesn't want to accept it, but I just don't think he has comprehended it so it is not a subject of conversation. I'm working on it. Irene <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2007 Report Share Posted March 1, 2007 we started our journey at the Veterns Administration (dad heard they were inexpensive) and they actually were quite good-- keep in mind its a " teaching " environment and doctors come and go but the records stay with the patient ( much better than hospitals and Nursing homes) If you are comfortable with your doctor AND he understands LEWY and how different it is from other dementias --stick with him.. Until we found this site and became educated we found every new doctor had a " new plan " which meant new drugs which usually sent my dad into a tailspin with a psychotic episode and stronger meds to control his outbursts... We also learned how IMPORTANT it is to be vocal with the doctors, hand them the LBD BROCHURES and make sure EVERYONE knows which drugs can result in aggravating the disease...EDUCATE YOURSELF, so you can feel confident when you speak with other family members who may only see him on " good " days and doubt your judgement.. This is a great place to find information and ask questions... THis site is filled with angels who have been down the lewy path and can help those still on it to avoid some of the pitfalls. Good Luck.. Keep Posting - -- In LBDcaregivers , " Irene elli " wrote: > > Hi, I'm a bit teary at the moment probably due to frustration and being unable to make headway with taking care of my husband in that we are on a wait list, about another month to go, to get into the Alzheimer Evaluation Unit here at our local hospital where he will be evaluated and given medication. His siblings are making me feel that I am not doing enough and that I should take him here, there and everywhere and I just feel like following the lead I started with our neurologist with whom I am confident. Whew, that was long winded. When your LO was diagnosed did you rush from doctors to hospitals in search of I don't know what? Another serious problem that is tormenting me is that my husband never speaks about his problem, Parkinsonism and LBD and I truly don't know if he is aware of what he has. He never asks, sits next to me at the neurologist where I do the talking. I deepdown don't feel this is right and that he should know but a psychologist friend told me all it would do would be to upset him more, agitate him. Does anyone have an opinion? I am really feeling like screaming! > > Irene > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2007 Report Share Posted March 1, 2007 Hi Donna, You are absolutely right....I like our neurologist and he seems to be savvy about Lewy...FYI I live in Italy...that said, his being savvy, I am still going to print out that medication list as you advise and bring it with me on the next visit. I am cramming on LBD and the doctor is fully aware that I am on my toes (not typical here). Yes, his family seems to know everything and they hardly ever see him, five minutes here or there. I find that part the worst as I get the impression that they think I am not handling as it should be or they could do better. My one sister in law today suggested that an elderly cousin of theirs who is a cardiologist should have a look at Renzo like this man is going to know about Lewy! I could have screamed. She called to tell me that she saw Renzo, my husband, on his bike today which of course means, what's the big deal, he looks okay to me. Spare me. Thanks for your input and hand holding, I guess I'll get used to the roller coaster. Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2007 Report Share Posted March 1, 2007 Imogene, it's not that he doesn't want to accept it, but I just don't think he has comprehended it so it is not a subject of conversation. I'm working on it. Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2007 Report Share Posted March 1, 2007 oh boy irene, i can relate to family interference, my mom and dad divorced in 1988. and i am an only child, when my dad asked me and my boyfirend to move to florida to take care of him,, he didnt tell his sister and mother that he asked us to move in. he forbid donnie to work as donni'es job was to take care of him adn me. PERIOD. but whenever he talked to my aunt or grandmother it was alwyas ' i dont know why donnie doesnt get a job' they thought we just decided to leave the house i loved in tenn to move down and take over his house too. i was told by both my aunt and my grandmother that i should go back home where i belonged and to leave my dad alone. i dealt with this for over 1 year, and then daddy decided we were going to sell MY house in tennessee and get rid of it, he was owner iwht me, i had no choilce so we sold it, my aunt and grandmother got upset that i did that but not as upset as i was. then they paid for my mom to come visit us, and she told them that if seh and daddy were still married that daddy would be in a nursing home as she wouldnt put up with his 'crap' only then did they change their attitudes toward myself and finally towards donnie. they saw my wondefful man who gave up everything for MY dad and me.,as a user and a thief. living off of my dad. yes they finally changed their attitudes when mom said what she did but still we went thru almost 2 years of bull from my family. yes i still harbor hard feelings. and daddy has been gone for over 1 year now. so turn a tough ear to the family and others'that know it all' do the best you can, give them information on lbd, print things out let them read it, and other than that, dont worry about them eventually he will not have a 'showtime' in front of them and they will see what is going on and hopefully try to hlep instead of chastise you instead?? good luck and hugs, sharon m ---- Irene elli wrote: Hi Donna, You are absolutely right....I like our neurologist and he seems to be savvy about Lewy...FYI I live in Italy...that said, his being savvy, I am still going to print out that medication list as you advise and bring it with me on the next visit. I am cramming on LBD and the doctor is fully aware that I am on my toes (not typical here). Yes, his family seems to know everything and they hardly ever see him, five minutes here or there. I find that part the worst as I get the impression that they think I am not handling as it should be or they could do better. My one sister in law today suggested that an elderly cousin of theirs who is a cardiologist should have a look at Renzo like this man is going to know about Lewy! I could have screamed. She called to tell me that she saw Renzo, my husband, on his bike today which of course means, what's the big deal, he looks okay to me. Spare me. Thanks for your input and hand holding, I guess I'll get used to the roller coaster. Irene -- I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery .After that he developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when his blood pressure fluctuations started dropping without coming back up on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 Imogene where I can I find the message you refer to from ? Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 Sharon, wow that is quite a family story! Mine is no where near as complicated and NOBODY would get me to sell my house. Fortunately or unfortunately mine is simple interference. For example, one of his brothers, he's the oldest of 6, has hardly spoken to him in 5 years when he comes to our city to visit, he doesn't call or get in touch. I dutifully sent every sibling a letter explaining what LBD is, Renzo, my husband's circumstances and what has been done to date and asked them not to call and bug me on the phone when Renzo is around as it is hard on me. I was not asking them for advice, it was a courtesy letter. The brother who has been out of touch called a sister and wants to know what he can do, he lives 100s of miles away, and is agonized. I was furious as you didn't care enough about his brother in 5 years and now wants to put his nose in. If he does contact me he will first have to apologize to my husband for these past five years and then we can see. Maybe I am too independent but I will gladly accept help but not intereference. I vented. Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 Irene - I'll step in here... I believe the message Imogene refers to is this one: http://health.groups.yahoo.com/group/LBDcaregivers/message/59330 > > Imogene where I can I find the message you refer to from ? Irene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 And this was the message I sent to you: http://health.groups.yahoo.com/group/LBDcaregivers/message/59329 > > Imogene where I can I find the message you refer to from ? Irene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 If it was a letter, I always include it at the bottom of the letter I write, just as I have done yours. If it is about the information she has on our main page then you will find it on the left of the page in the LIST section. Use this address to find her wonderful list. http://groups.yahoo.com/group/LBDcaregivers/ You'll find what you need after getting on the main page. Sign on as a new member, and do what they tell you. Once you are on, then save the address for everything. Love a bunch Imogene In a message dated 3/2/2007 4:18:29 AM Central Standard Time, irenevictoria.manias@... writes: Imogene where I can I find the message you refer to from ? Irene <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 Thank you . You always know what I mean, even when I don't half the time, (grin) Imogene In a message dated 3/2/2007 4:47:39 AM Central Standard Time, octoryrose@... writes: Irene - I'll step in here... I believe the message Imogene refers to is this one: http://health.groups.yahoo.com/group/LBDcaregivers/message/59330 --- In LBDcaregivers , " Irene elli " wrote: > > Imogene where I can I find the message you refer to from ? Irene > <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 Dear Irene, I'm so sorry that your husbands family is not being more supportive. I have that problem with one sibling who second guesses everything I do for Dad. Fortunately I have one sister that is very supportive. Our other sibling doesn't care too much what we do as long as he doesn't have to be involved. It does take time to get into specialists and if your husbands family was being resonable they would realize that. For now I would go with what the neurologist says unless you have reason to doubt him/her. As for your husband not talking about his condition, be patient. Everyone processes information differently. Additionally, his ability to reason and understand is compramised. It hasn't been until recently that my Dad has seemed to fully understand what is happening to him and even now I'm not sure he understands all the time. Also, remember that men handle things in general differently than we women do. Just give him some time and continue to be supportive. You are doing a great job Irene and it's not an easy job. There are no easy answers and there are no right or wrong answers. You obviously love your husband very much. Follow your heart combined with reason. What I mean by that is sometimes the things we have to do for our loved one breaks our heart but we know it is the right thing to do for them. Hugs to you, Leah > > Hi, I'm a bit teary at the moment probably due to frustration and being unable to make headway with taking care of my husband in that we are on a wait list, about another month to go, to get into the Alzheimer Evaluation Unit here at our local hospital where he will be evaluated and given medication. His siblings are making me feel that I am not doing enough and that I should take him here, there and everywhere and I just feel like following the lead I started with our neurologist with whom I am confident. Whew, that was long winded. When your LO was diagnosed did you rush from doctors to hospitals in search of I don't know what? Another serious problem that is tormenting me is that my husband never speaks about his problem, Parkinsonism and LBD and I truly don't know if he is aware of what he has. He never asks, sits next to me at the neurologist where I do the talking. I deepdown don't feel this is right and that he should know but a psychologist friend told me all it would do would be to upset him more, agitate him. Does anyone have an opinion? I am really feeling like screaming! > > Irene > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 Dear Leah, You are so lucky to have one sister, at least, that is supportive. Living in Italy far from my family means that my entire family is on the other side of the world yet I seem to be getting more support from them than my husband's family. I agree, I have no problems with this neurologist and I am going to stay with him until, if ever, I am no longer content with his care, etc. Patience has never been one of my attributes and it is the one I really am going to need and fast. Today it really hit home how confused he is and I see that I am going to gently take over the reigns with respect to the paperwork before he makes a mess of everything. I feel so bad for him. Anyway, what can we do but carry on and make the most of a bad situation. Thanks Leah for your support. Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 Irene: When my husband got worse, the kids also second-guessed me. He was pretty good at showtime when they came, so they didn't believe he was as bad as I said he was. Then, I got this: You shouldn't do this; you should have done that; why didn't you do this, why didn't you do that? Finally, one time one of my daughters kept him for an afternoon while I went somewhere, and she found out what I meant. The daughter who lived in town was aware how bad he was. It was the ones who lived away who didnt' see it. June --- jonaslaj wrote: > Dear Irene, > > I'm so sorry that your husbands family is not being > more supportive. > I have that problem with one sibling who second > guesses everything I > do for Dad. Fortunately I have one sister that is > very supportive. > Our other sibling doesn't care too much what we do > as long as he > doesn't have to be involved. It does take time to > get into > specialists and if your husbands family was being > resonable they > would realize that. For now I would go with what > the neurologist > says unless you have reason to doubt him/her. > > As for your husband not talking about his condition, > be patient. > Everyone processes information differently. > Additionally, his > ability to reason and understand is compramised. It > hasn't been > until recently that my Dad has seemed to fully > understand what is > happening to him and even now I'm not sure he > understands all the > time. Also, remember that men handle things in > general differently > than we women do. Just give him some time and > continue to be > supportive. > > You are doing a great job Irene and it's not an easy > job. There are > no easy answers and there are no right or wrong > answers. You > obviously love your husband very much. Follow your > heart combined > with reason. What I mean by that is sometimes the > things we have to > do for our loved one breaks our heart but we know it > is the right > thing to do for them. > > Hugs to you, > Leah > > > > > > Hi, I'm a bit teary at the moment probably due to > frustration and > being unable to make headway with taking care of my > husband in that > we are on a wait list, about another month to go, to > get into the > Alzheimer Evaluation Unit here at our local hospital > where he will be > evaluated and given medication. His siblings are > making me feel that > I am not doing enough and that I should take him > here, there and > everywhere and I just feel like following the lead I > started with our > neurologist with whom I am confident. Whew, that > was long winded. > When your LO was diagnosed did you rush from doctors > to hospitals in > search of I don't know what? Another serious > problem that is > tormenting me is that my husband never speaks about > his problem, > Parkinsonism and LBD and I truly don't know if he is > aware of what he > has. He never asks, sits next to me at the > neurologist where I do > the talking. I deepdown don't feel this is right > and that he should > know but a psychologist friend told me all it would > do would be to > upset him more, agitate him. Does anyone have an > opinion? I am > really feeling like screaming! > > > > Irene > > > > > > > > [Non-text portions of this message have been > removed] > > > > > ________________________________________________________________________________\ ____ It's here! Your new message! Get new email alerts with the free Yahoo! Toolbar. http://tools.search.yahoo.com/toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 June, It's so easy to tell people what to do, isn't it? At least now you have set them straight. Good luck June. Irene Re: Re: Family Interference Irene: When my husband got worse, the kids also second-guessed me. He was pretty good at showtime when they came, so they didn't believe he was as bad as I said he was. Then, I got this: You shouldn't do this; you should have done that; why didn't you do this, why didn't you do that? Finally, one time one of my daughters kept him for an afternoon while I went somewhere, and she found out what I meant. The daughter who lived in town was aware how bad he was. It was the ones who lived away who didnt' see it. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 hi irene --- the patience grows when you tend it -- i've found. patience has NEVER been my long suit............(to put it mildly!!!!)....but after taking care of my grandma this last 18 months......well.....i've become an awfully patient person (most of the time). not just with her, but in the world at large as well. it's funny how grace moves in when we need it most. xo anna Irene elli wrote: Dear Leah, You are so lucky to have one sister, at least, that is supportive. Living in Italy far from my family means that my entire family is on the other side of the world yet I seem to be getting more support from them than my husband's family. I agree, I have no problems with this neurologist and I am going to stay with him until, if ever, I am no longer content with his care, etc. Patience has never been one of my attributes and it is the one I really am going to need and fast. Today it really hit home how confused he is and I see that I am going to gently take over the reigns with respect to the paperwork before he makes a mess of everything. I feel so bad for him. Anyway, what can we do but carry on and make the most of a bad situation. Thanks Leah for your support. Irene --------------------------------- We won't tell. Get more on shows you hate to love (and love to hate): Yahoo! TV's Guilty Pleasures list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 irene, i understand completely about not wanting interference. BUT dont cut your nose off to spite your face as the saying goes. in time you will need help, you will need to be there 24hours 7 days a week. you wont even beable to take a shower without worrying that he is into something, like a toddler would be. if this brother is sincere, allow him to help, but you tell him what you need. maybe it is for him to come and spend a weekend with him once a month so you can take a break and let someone else caregive. maybe it is to buy the medications if money is an issue. or pay for someone to come in a few hours a week to give you a break, if they are willing to help allow them to help. give yourself the break that you will need. even with donnie here to help with dad and a caregiver on friday nites so we can go bowling on our league, i was a matryr , beleliving only i can do things right and only i can do for my dad and i wound up in the hosp 5 weeks becuase i let myself get runned down and had a severe double kidney infection and a staff infection after that, so take it from me who learned the hard way, hugs, sharon a=m ---- Irene elli wrote: Sharon, wow that is quite a family story! Mine is no where near as complicated and NOBODY would get me to sell my house. Fortunately or unfortunately mine is simple interference. For example, one of his brothers, he's the oldest of 6, has hardly spoken to him in 5 years when he comes to our city to visit, he doesn't call or get in touch. I dutifully sent every sibling a letter explaining what LBD is, Renzo, my husband's circumstances and what has been done to date and asked them not to call and bug me on the phone when Renzo is around as it is hard on me. I was not asking them for advice, it was a courtesy letter. The brother who has been out of touch called a sister and wants to know what he can do, he lives 100s of miles away, and is agonized. I was furious as you didn't care enough about his brother in 5 years and now wants to put his nose in. If he does contact me he will first have to apologize to my husband for these past five years and then we can see. Maybe I am too independent but I will gladly accept help but not intereference. I vented. Irene -- I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery .After that he developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when his blood pressure fluctuations started dropping without coming back up on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Sharon, I read you and I heard you and you are right. I don't want to cut my family here off by any means I just want them to be caring towards their brother without driving me nuts with questions and doubts. As Imogene and others have said, I need to worry about today and not too far down the line or I will go batty. I still worry though but don't tell anyone! I need to organize at least my thoughts for those times when I need to do things. Life is very different here in Italy but I will find the right paths. Hopefully the LBD will go slow enough to give me time to find my way. Thanks again. Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Hi , I hope it hurrys and makes its way to my door....patience. Actually I have patience for certain things but then other things throw me into a tizzy. Like you said, it will come with time and training. Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 irene, you and imogene are so write about not overly worrying about teh future but then you also have to anticipate it and hopefully slowly have some plans laid out, check out some facilities incase you do have to utilize that option, it is better to check a little ahead of time then to wait until the last minute, you can always put him on a waiting list for the facility of your choice and if all is still ok, trun it down when it is his turn and go back to teh bottom of the list again, and wait until next go around. i trusted the hospital to put daddy in a good and safe nursing home for post op rehab, but the place they chose damn near killed my daddy. they must not have given daddy his blood thinners as he developed a pulmonary embolysis, lung blood clot, and their technician who after my daughter and hubby discovered daddy in severe respirratory distress, the tech said let me move the large wheelchair as it is taking up vital air space and get him a fan to help him breathe, my daughter said call 911, NOW, dad was in such trouble they had to bring him to the closest hoisp as he wouldnt survive teh 20 minutes drive to the hosp of our choice. now why our hosp would put daddy so far from them was beyond me. i was so upset, after dad recovered from that i had him moved to teh facility of our choice where he died several months later. i was so lucky that sissy and donnie went to check on my dad or he would have died and we wouldnt have knowno why, ugh, so slowly check on things, do it at your pace but dont put it off, you need to be prepeared just in case. hugs, sharon a-m ---- Irene elli wrote: Sharon, I read you and I heard you and you are right. I don't want to cut my family here off by any means I just want them to be caring towards their brother without driving me nuts with questions and doubts. As Imogene and others have said, I need to worry about today and not too far down the line or I will go batty. I still worry though but don't tell anyone! I need to organize at least my thoughts for those times when I need to do things. Life is very different here in Italy but I will find the right paths. Hopefully the LBD will go slow enough to give me time to find my way. Thanks again. Irene -- I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery .After that he developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when his blood pressure fluctuations started dropping without coming back up on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Right on, Leah! Imogene In a message dated 3/4/2007 12:35:08 PM Central Standard Time, jonaslaj@... writes: I totally understand about not having patience Irene. Sometimes I get so angry and frustrated that I just want to run away but I know that wouldn't accomplish anything. Don't be afraid to be vocal with his siblings in telling them what you do and don't need. I know it's hard but after you do it a few times it gets easier. If you can get even one sibling to be reasonable and be on your side then let that sibling handle the others. Recently when my Dad was released from the hospital to a NH my sister that likes to pick at everything gave me a hard way to go the first time we meet up at the NH. My other sister called her the next day and politely (no sarcasim there) told her she needed to back off of me. That neither one of them had dropped their lives to care for Dad since our mother died 17 years ago and especially since he became sick making all the health care and financial decisions and trust me, I was having to make some very tough ones at that point. So my point is, if there is even one sibling that you can get close enough to, show them the pamplets on LBD, explain how being picky about doctors is important for proper treatment and let them run interferance it would be helpful. But if that can't happen don't be afraid of saying, " Look...you have the right to know what is happening with your brother and I am doing my best to insure that he gets the best treatment anywhere. I need your support, not your critisizm " . I know that is really easy for me to sit on this side of the world and say but the one thing I have learned in the last few months is that if I don't stand up for Dad, who else will? Hugs to you, Leah <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Sharon, I know you are right about being prepared and I am going to start making my lists now but this is still all so new to me that I can't even begin thinking that far down the line. Also, here in Italy, it is so different than in the US with health care facilities, etc. I would know what to do with him here so I am going to wait until we get to the top of the wait list for the Alzheimer Evaluation Unit at our hospital here in Lucca and then hit the neurologist with a list of my prepared questions. Sounds to me like you did everything possible for your father and I am sure he knew it even if he couldn't express it. How are you doing? Irene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 I totally understand about not having patience Irene. Sometimes I get so angry and frustrated that I just want to run away but I know that wouldn't accomplish anything. Don't be afraid to be vocal with his siblings in telling them what you do and don't need. I know it's hard but after you do it a few times it gets easier. If you can get even one sibling to be reasonable and be on your side then let that sibling handle the others. Recently when my Dad was released from the hospital to a NH my sister that likes to pick at everything gave me a hard way to go the first time we meet up at the NH. My other sister called her the next day and politely (no sarcasim there) told her she needed to back off of me. That neither one of them had dropped their lives to care for Dad since our mother died 17 years ago and especially since he became sick making all the health care and financial decisions and trust me, I was having to make some very tough ones at that point. So my point is, if there is even one sibling that you can get close enough to, show them the pamplets on LBD, explain how being picky about doctors is important for proper treatment and let them run interferance it would be helpful. But if that can't happen don't be afraid of saying, " Look...you have the right to know what is happening with your brother and I am doing my best to insure that he gets the best treatment anywhere. I need your support, not your critisizm " . I know that is really easy for me to sit on this side of the world and say but the one thing I have learned in the last few months is that if I don't stand up for Dad, who else will? Hugs to you, Leah > > Dear Leah, > > You are so lucky to have one sister, at least, that is supportive. Living in Italy far from my family means that my entire family is on the other side of the world yet I seem to be getting more support from them than my husband's family. I agree, I have no problems with this neurologist and I am going to stay with him until, if ever, I am no longer content with his care, etc. > > Patience has never been one of my attributes and it is the one I really am going to need and fast. Today it really hit home how confused he is and I see that I am going to gently take over the reigns with respect to the paperwork before he makes a mess of everything. I feel so bad for him. > > Anyway, what can we do but carry on and make the most of a bad situation. Thanks Leah for your support. > > Irene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Leah, WOW. This is a message I will save and reread. You are right. The pamphlet would be good but none of them speak English so that's a waste of time. I did send them all a letter with details of LBD and Parkinsonism so they would know what it was all about. I will work on my one sister in law and hopefully she will come around and consider me capable of caring for my husband of 31 years! I don't want to turn them away and get them angry as I know I will selfishly need them for physical help, but I just don't want them meddling now when I am still feeling my way in the dark. Thanks Leah you're a gem. Irene Re: Re: Family Interference Right on, Leah! Imogene In a message dated 3/4/2007 12:35:08 PM Central Standard Time, jonaslaj@... writes: I totally understand about not having patience Irene. Sometimes I get so angry and frustrated that I just want to run away but I know that wouldn't accomplish anything. Don't be afraid to be vocal with his siblings in telling them what you do and don't need. I know it's hard but after you do it a few times it gets easier. If you can get even one sibling to be reasonable and be on your side then let that sibling handle the others. Recently when my Dad was released from the hospital to a NH my sister that likes to pick at everything gave me a hard way to go the first time we meet up at the NH. My other sister called her the next day and politely (no sarcasim there) told her she needed to back off of me. That neither one of them had dropped their lives to care for Dad since our mother died 17 years ago and especially since he became sick making all the health care and financial decisions and trust me, I was having to make some very tough ones at that point. So my point is, if there is even one sibling that you can get close enough to, show them the pamplets on LBD, explain how being picky about doctors is important for proper treatment and let them run interferance it would be helpful. But if that can't happen don't be afraid of saying, " Look...you have the right to know what is happening with your brother and I am doing my best to insure that he gets the best treatment anywhere. I need your support, not your critisizm " . I know that is really easy for me to sit on this side of the world and say but the one thing I have learned in the last few months is that if I don't stand up for Dad, who else will? Hugs to you, Leah <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. 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.