Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 Welcome, I think you'll find good company here. It sounds like you dealt with some pretty severe situations. Not everyone's nada was that bad, but there are certainly people on this list that have walked in your shoes. I'm amazed you were able to keep a diary! My nada gave me a fair amount of privacy compared to some other list members (I could lock the bathroom door and my bedroom door), but my diary didn't escape her snooping! After getting in trouble for things I had written, I just stopped writing one Too bad... I think your experience of re-reading what you were going through to validate your memories would be a good one. Keep writing in... that's why we're here, to share our stories with each other. --Anon --- malowane@... wrote: > Been lurking for a couple of days, so I thought I'd introduce myself. > Got a BPD mother who was " quirky " but functional until I hit puberty. > I think the natural independence seeking that comes with that > period in life might have been the catalyst that set her off. I'm > one of four kids and we each had our " role " in the house. I was the > bad one. Two others were chosen ones, and the fourth vacilated > depending on the day. My Dad pretty much stayed in the background > and tried to stay out of her radar. Not too many good memories to > speak of, on good days we were merely neglected (no dentist, doctors, > clean house etc.), on bad days suicide was threatened by Nada or even > myself. There were no boundaries. My sister was forced to sleep in > the same bed as my mother for many years, all my phonecalls were > listened in on and occasionally my room was ransacked with things > torn and broken. I actually kept a diary during the worst year which > I now find somewhat helpful to look back on. Lets me know things > weren't/aren't in my head. > > I've read SWOE and am in the process of getting some other books. > It's good to know this group is here. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 In a message dated 2/6/01 11:18:12 AM Pacific Standard Time, bpdsurvivor@... writes: << Got a BPD mother who was " quirky " but functional until I hit puberty. > I think the natural independence seeking that comes with that > period in life might have been the catalyst that set her off. >> I think that is a common experience among KOs. I have heard it said that the independence seeking of adolescents is interpreted by nadas as betrayal. Instead of being glad that their children are seeking to find their way in the world, they think the child is abandoning them. also the loss of total control of another person upset them a lot. My mother is still mad at me for my stormy adolescence. Love, Lissa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Hi . Welcome. I am a newer member myself, so I don't have the background on your Mother. Just from my own experiences, I would suggest introducing a walker for your Mum. They have the kind that have a seat on it so when she tires, she can sit down for a rest. As for the eating, sometimes depression can play a large role in eating and sleeping habits. I would alert her primary doctor as to your concerns about her appetite. Some drugs can alter appetite, so if she was just put on new medication, this could be the culprit. Good luck with things and keep us posted! > Newcomer > > Dear all, > > I'm sister , is already a member of the group, our mum > is > . I know that my sister has already told you much about our mum so I > > won't repeat the inforamtion. Normally,I read messages through 's > membership, but she is away in France and I'm missing reading and wanting > to > talk, so decided to join myself. > > I'm really concerned about Mum's weight, she has lost so much. Also, > concerned about her mobility, she is falling all the time,she has had > numerous accidents, yet the home seem determined that we should keep her > mobile. Does anyone have any advice on this phase of the disease? > > As a family we are seriously thinking of trying to get mum to stay in a > wheelchair for her own safety. > > Is this wise? > > > > > > > _________________________________________________________________ > Send and receive Hotmail on your mobile device: <http://mobile.msn.com> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Hi . Welcome. I am a newer member myself, so I don't have the background on your Mother. Just from my own experiences, I would suggest introducing a walker for your Mum. They have the kind that have a seat on it so when she tires, she can sit down for a rest. As for the eating, sometimes depression can play a large role in eating and sleeping habits. I would alert her primary doctor as to your concerns about her appetite. Some drugs can alter appetite, so if she was just put on new medication, this could be the culprit. Good luck with things and keep us posted! > Newcomer > > Dear all, > > I'm sister , is already a member of the group, our mum > is > . I know that my sister has already told you much about our mum so I > > won't repeat the inforamtion. Normally,I read messages through 's > membership, but she is away in France and I'm missing reading and wanting > to > talk, so decided to join myself. > > I'm really concerned about Mum's weight, she has lost so much. Also, > concerned about her mobility, she is falling all the time,she has had > numerous accidents, yet the home seem determined that we should keep her > mobile. Does anyone have any advice on this phase of the disease? > > As a family we are seriously thinking of trying to get mum to stay in a > wheelchair for her own safety. > > Is this wise? > > > > > > > _________________________________________________________________ > Send and receive Hotmail on your mobile device: <http://mobile.msn.com> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Donna, Your nh experiences scare me to death. I don't know your situation real well, but do you have any " group " type homes available that could take your Mom? I feel so fortunate that we have my MIL in a group home. There are up to 6 patients, and she has a private room and they have a staff person there 24 hours a day. One nurse comes and does vitals and things like that. I do know you have to be able to help care for yourself in order to reside there. There are some things there that I am not crazy about, but after hearing some of the nh stories here, I will gladly deal with the little things that I don't like. My Grandpa was in a nursing home until he died a couple of months ago. The care there was not bad, but not great. Many times I would come and his portable O2 tank would be empty. Like you said, if they don't want to eat, they leave and go onto the next patient. His roommate would sit in soiled bottoms for hours. It was so upsetting for me to see this. When I asked him how he handles things (he didn't have LBD, he was of sound mind, but physically falling apart), it wasn't a big deal to him at all. He had accepted it. I was the one who couldn't accept it. He had made some friends, and believe it or not, did not want to leave. It is good that you keep on the staff there where your Mother is. Your Mom is lucky to have you looking out for her! > Re: Newcomer > > , > > My Mom is 88 and has been in a wheel chair with a soft belt since she > went into a nh last September, > > I didn't want to risk a broken hip and nh staff just don't watch her > like I did. Mom has an alarm on while she sleeps so if she tries to get > up at night the staff will know. Yet I have arrived at the nh and found > her sitting on the edge of the bed trying to " do " something and with no > clothes on late at night. There was no staff around. And I don't see > staff make a concerted effort to feed them. If patients don't want to > eat, staff goes and feeds someone who does. On bad cook days, I have > watched lots of trays go back just about full except for the desserts. > Or I have watched staff sprinkle sugar over the food so they will eat > something and not lose weight. > > There are no easy answers. > > Donna > > A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Donna, Your nh experiences scare me to death. I don't know your situation real well, but do you have any " group " type homes available that could take your Mom? I feel so fortunate that we have my MIL in a group home. There are up to 6 patients, and she has a private room and they have a staff person there 24 hours a day. One nurse comes and does vitals and things like that. I do know you have to be able to help care for yourself in order to reside there. There are some things there that I am not crazy about, but after hearing some of the nh stories here, I will gladly deal with the little things that I don't like. My Grandpa was in a nursing home until he died a couple of months ago. The care there was not bad, but not great. Many times I would come and his portable O2 tank would be empty. Like you said, if they don't want to eat, they leave and go onto the next patient. His roommate would sit in soiled bottoms for hours. It was so upsetting for me to see this. When I asked him how he handles things (he didn't have LBD, he was of sound mind, but physically falling apart), it wasn't a big deal to him at all. He had accepted it. I was the one who couldn't accept it. He had made some friends, and believe it or not, did not want to leave. It is good that you keep on the staff there where your Mother is. Your Mom is lucky to have you looking out for her! > Re: Newcomer > > , > > My Mom is 88 and has been in a wheel chair with a soft belt since she > went into a nh last September, > > I didn't want to risk a broken hip and nh staff just don't watch her > like I did. Mom has an alarm on while she sleeps so if she tries to get > up at night the staff will know. Yet I have arrived at the nh and found > her sitting on the edge of the bed trying to " do " something and with no > clothes on late at night. There was no staff around. And I don't see > staff make a concerted effort to feed them. If patients don't want to > eat, staff goes and feeds someone who does. On bad cook days, I have > watched lots of trays go back just about full except for the desserts. > Or I have watched staff sprinkle sugar over the food so they will eat > something and not lose weight. > > There are no easy answers. > > Donna > > A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 In a message dated 9/6/02 2:09:00 PM Central Daylight Time, jgibbs@... writes: > and he felt that her diagnosis was leaning more toward Lewey Body Disease > which would be better than Alzheimer's. (I don't see any difference in the > two. Both are incurable.) Hello, Jackie, and welcome. I agree with both diseases being incurable, but in time you will find that there are a lot of differences between LBD and Alzheimers, other than either being curable. The most significant thing is the hypersensitivity of the LBD patient to medications, especially neuroleptics, which can cause irreversible damage. There are also some behavioral differences. I am curious, though, as to why LBD would be a diagnosis preferable to AD. Would you mind expanding on that thought, please? I haven't much experience with AD to compare in terms of the complexity of caring for the patient, etc. I ask because I know people who feel that LBD is the most awful of awful disease. Thanks . . . And welcome again, Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 In a message dated 9/6/02 2:09:00 PM Central Daylight Time, jgibbs@... writes: > and he felt that her diagnosis was leaning more toward Lewey Body Disease > which would be better than Alzheimer's. (I don't see any difference in the > two. Both are incurable.) Hello, Jackie, and welcome. I agree with both diseases being incurable, but in time you will find that there are a lot of differences between LBD and Alzheimers, other than either being curable. The most significant thing is the hypersensitivity of the LBD patient to medications, especially neuroleptics, which can cause irreversible damage. There are also some behavioral differences. I am curious, though, as to why LBD would be a diagnosis preferable to AD. Would you mind expanding on that thought, please? I haven't much experience with AD to compare in terms of the complexity of caring for the patient, etc. I ask because I know people who feel that LBD is the most awful of awful disease. Thanks . . . And welcome again, Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 Hi! This is the first time I have posted since I joined. I am the caretaker for my 81 year old mother. Four years ago her mother died at nearly 100 years old with a mind that was as clear as when she was 40. Which was very good. Her husband died 23 years ago with chronic brain syndrome. Three years ago my mother baught a house in Tifton (30 miles from her home)so I could take care of her. I moved in with her. She has always had problems with her memory but things escalated after our move. We went through several medical doctors before we finally found an internal medicine doctor that seems to be working pretty well. He put her on paxil for depression thinking that would reverse the dementia. She had been on Paxil for several years and I didn't think that was helping her problems. I wrote notes on her wanting to go to the other house to check on her parents. She hasn't lived in that house for over 55 years. She doesn't remember living on the farm or at Kingwood Gardens. Before I quit work, she was falling or getting dizzy quite a bit. She hasn't fallen since. She has gotten a lot slower than normal. She gets reality mixed up with fiction. Like she sees the actors that were on tv sitting in the living room, she see's that Granny has her light on in her house, etc. This was happening mostly in late afternoon to evening time. Our internal medicine doctor just wasn't listening to me or reading any of my documentation so I asked him to refer us to this neurologist that is suppose to be good in his field. We had an EEG (which was normal) and MRI (had some atrophy and she has had some strokes. The radiologist said it was typical of an alzheimer's brain. Our neurologist said that mama did better on her memory test and he felt that her diagnosis was leaning more toward Lewey Body Disease which would be better than Alzheimer's. (I don't see any difference in the two. Both are incurable.) He wasn't ruling out Alzheimer's but he is keeping a close eye on her. He has increased her exelon to 1 1.5 mg twice a day and placed her on Seroquel (to help the psychotic area). Everyone's share have really been helpful to me and it's nice to know that I am not alone. I have three older sisters. One comes on the weekend to give me a break, another comes on Monday evenings so I can go to a meeting and another comes maybe 4 times a year. I told her that when we went to the hospital to have the MRI, they asked if I was her daughter. Mama said yes and she had two others. She didn't mention her. I am afraid she is forgeting her. Thanks! Jackie Quote Link to comment Share on other sites More sharing options...
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