Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 Donna, I just want to say your post really hit a chord with me. My mil’s doctors kept telling us it was ” just dementia” – about two years of that was driving me crazy because I wanted to know a diagnosis. They kept saying “dementia” and one gave me quite a lecture “what else do you need to know?” etc. I was quite clear that I was concerned it could be LBD and this would be important to know especially because of her sensitivities to various drugs and that doctor still poo pooed me and refused to read the literature I brought in. Before him and his partner, my mil saw an internist who said she had “peripheral neuropathy” in her feet and that is why she kept falling and shuffled along stubbing her toes on the floor etc. I think that was a dx for about 5 years before she had the official dx 3 years ago. She was shuffling and stumbling 8 years prior to diagnosis. We had to fight these ignorant doctors to get a referral to the ucsf memory and aging clinic where we did finally receive this diagnosis. I wrote a strong letter demanding a referral and the reasons why and hand delivered it then finally they made the referral (I had found a good primary care doc for her to change to). We even saw a neurologist up here who missed the dx – he thought she had hydrocephalous but said there was no point doing an mri to see because she was not in good enough health to withstand a surgery to install a shunt. And this guy published books about treating dementia! Her previous doctors all asked me what good would it do to have a diagnosis? It can’t be cured after all. Dementia is dementia, it’s all the same, etc. etc. All this and my mil has great health insurance also – she can go anywhere so it’s not like these people were “gatekeepers” in an hmo. These people were unwilling to extend themselves out of some outdated stereotype or skewed reasoning they had in their heads. It would have made a huge difference if we knew 8 years ago or 5 years ago – we could have better planned for her future care and avoided some drugs and maybe we wouldn’t be struggling here now without enough caregiving assistance because we cannot afford $25 an hour for an agency. As I sit up nights with her, I still compose letters in my head to those doctors about their negligence and errors made with my mil to let them know that it does make a big difference – even if there is no cure. Even knowing as late as we did has helped us a lot. I cannot imagine how terrible things would be if we did not have a diagnosis and had acquiesced to those doctor’s ideas of dementia is dementia, it’s all the same. I can only imagine how you felt with what happened with your mother and I’m so very sorry you or anyone has been made to go through this illness with such lousy ignorant care. But I’m so glad you have taken that very painful experience with your mother and worked to try and see that changes are made. I am sure the next person that comes along gets a better deal because of what you are doing. You are helping a great many people I have no doubt. If there’s anything left of me after this I might do a little of the same or similar – there is sure a need for it where we live. Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Donna Mido Sent: Monday, November 15, 2010 6:42 AM To: LBDcaregivers Subject: Fw: Re: Roll Call I will try this again. It didn't go through. Donna Roll Call Hi, All, My mother was one of those LBD patients who has had precipitous declines in function.� When my father died (suddenly of a hemorrhagic stroke) in 2006, we moved my mother, still not diagnosed with LBD,� from TX to live with my husband and me in Indiana.� With all those changes, the worst being the loss of my dad, Mom's level of functioning plummeted and the hallucinations began within two months of my dad's passing.� Like so many others here, I delayed getting her to a neurologist, blaming her symptoms on her grief as well as her vision problems (decades of glaucoma).� After struggling for a year with hallucinations, urinary incontinence, and wandering at night, the first visit with a neuro gave us a name for all this, as well as that precious drug, Seroquel.� Her level of functioning actually increased in those first five months on Seroquel and the medication also kept her nasty hallucinations at bay. Mom had another huge decline in January, 2008.� While recovering from pneumonia, she " collapsed " (yes, that was the dr's dx after a 4 day hospitalization and many tests), and had a seizure.� By the time we got her back home she could not walk (and that was without any new meds in the hospital), but could still bear weight to transfer.� Two months of that routine and she was no longer bearing weight.� Mom has been bedbound since January, 2008, needing assistance in all ADLs.� She no longer knows who I am or where she is.� Just today she has gone to a new low.� She was unconscious and unresponsive until about 1PM today and then only quietly mumbling, but unable to accept fluids.� Finally, just an hour ago she was alert enough to drink 6 oz. of cranberry juice.� She normally takes her meds crushed and stirred into chocolate pudding, but since I'm not willing to risk aspiration, today is a " drug holiday. " � (Oliver Sacks, M.D. described his use of this in Awakenings.)� We're in unexplored territory here at my house, but a HUGE thank you to all of you awesome people who have posted here and educated us all on what to expect.� Many of you have been here and done this and, if you don't mind,� I'll be continuing to draw on your experience and courage.� Please keep posting often. Thank you, Sheila in IN daughter of Louise, age 88, dx LBD 7/2007 Seroquel 9AM - 37.5 mg. 3PM - 62.5 mg. 9PM - 100 mg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 I am going to offer a suggestion on the hospital bed. Watch the want ads in your paper. I found a very good automatic hospital bed free. When people do not use them anymore they don't know what to do with them. Kathy from MN ________________________________ To: LBDcaregivers Sent: Sun, November 14, 2010 10:37:55 PM Subject: Roll call  I and husband are caring for my 93 old mother in law. She was diagnosed 3 years ago and before that we were told she had dementia. The LBD and Parkinson’s was the new information that fit the picture to a “T†of what we have been struggling with the last 7 years. My mil had trouble several years before and I really wonder what was going on then – she was anorexic for the last 20+ years, and she fell a lot as she had very little balance. I don’t know where we are now in stages except a lot of things are late stage, more and more it seems. This week has been very difficult to say the least. She is still ambulatory but perhaps barely as it is a struggle to coach her to lift her feet, take big steps, don’t reach for the wall (that’s more than 3 feet away) don’t sit down etc. She doesn’t know when she’s about to have a bm or finished with one. The constipation is constant – the bowel is just not moving it through. Have tried the ducolax sup several times as directed by her docs and nothing. She’s very confused, out of it and very very crabby. She is biting all our heads off regularly. Several times this weekend her breathing is rough – it’s like she’s forgetting how to breath. The nebulizer no matter what we have tried as far as passiveness she hears that droning motor and starts huffing and puffing. I thought I was imagining things until I tried many times just switching it on and seeing and yes, the sound makes her start panting hard like she does when the mask is on her. We are now just doing the neb with mask while she is lying down comfortable and hope she’ll go to sleep and sometimes she does but then starts the hard panting again to the point of hyperventilating and making herself sick. Most of the time when I take the mask off she doesn’t even realize it’s off and still breaths like a runaway train. The giant hiatal hernia is causing the same problems with nausea and pain from excess gas and we keep trying to get her to sit or stand up straight so she’ll belch and relieve the pressure – this on top of the very small meals, etc. She doesn’t remember why or understand why her stomach hurts. And as far as trying to explain why she feels bad and how that relates to what she’s doing it’s not getting through the fog though she nods and acts like she understands. She is groaning almost constantly now – and we are constantly trying to figure out what the groaning is for. Pain? Nausea? Hungry? Need to go to bathroom? None of the above? I’ve asked her why she is groaning so much – she says it’s a habit. Or she says I didn’t groan I said (something). I give her feedback – you just started groaning, are you trying to say something? Yes, she was saying she wants some Jello. I tell her it didn’t sound like that but I’m very glad you can tell me you would like jello. So this is the speech thing I read about I guess. We have been working hard to keep her body strong and preserve her ability to move as much as possible but now we’re watching it take her mind away a lot more and her ability to control her body. This afternoon as I was trying to get her to do her leg lifts she said she was done she didn’t want anymore. I asked her what she was talking about - done with these exercises or done for the day… she said “everything!â€. She meant everything too. She said she doesn’t want to be alive anymore, it’s too hard, she’s done. At the same time we are strapped for finding good competent affordable caregivers. We had one but after 5 months she messed up really bad and didn’t think it was a problem and I had to tell her not to come back. I had the feeling she was not going to be around long when my mil started having more and more trouble. Maybe she couldn’t handle it. We have another caregiver now for the last 2 weeks and so far ok but not as good as I’d like. We really need an angel at this point. I have a friend also who is helping a little. We are still going to try to go see my folks for the weekend and have a grant from an local non profit to go towards respite care. My folks are just a couple hours drive away but it may as well be 20 hours it’s so hard to get away anywhere. I hope to go with my mother to the Mandarin festival in Auburn – which we’ve done every year. Usually she’s the one needing a sanity break (my father’s knee replacement was an ordeal!) but now I’m really looking forward to it also… afraid to look forward to it too much because it might jinx it. My mil’s doctor says she is not ready yet for hospice, they will expect she is in a lot worse condition. I’m wondering maybe try seraquel again and start out really low. She didn’t do well with the lowest dose pill but maybe if I cut it in quarters she could do better with a quarter of it? She’s taking Remeron now at night and after several attempts I had to start her on a quarter pill for two weeks before I could go to half a pill and it’s helping her at night as far as I can tell she relaxes a little and then sleeps some. Otherwise she is up all night tossing/turning/agitated. Her doc said ¼ pill wouldn’t do anything but it really did a lot and she was pretty knocked out for the first 4 days before it started to improve to where she could sleep some at night and function in the day. That was about two months ago and now she is still sleeping some of the night but thrashing more too and some days barely coherent. I got pipe insulation foam and padded her bed with it and used vet wrap tape to hold it on. That way the bed rail functions but it doesn’t bruise her when she hits it all the time. She grips it at night like she’s on some kind of amusement park ride (mystery to us why) her arm was just black and blue all over because of it. That was a good idea that worked at least. I think we are close to being able to get another hospital bed through medicare and wondering if there are really any choices from the rack they sent before that was bent and rusted and I fight everyday. And if I should try to spring for an automatic version because I know I will not be able to crank it manually. And then wondering about practical things to come… and hoping we really do get a break this weekend, we could really use it. If this reads like a “report from the front line†it is – we are really feeling it now. Dorothy and Art Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 Checking in on Roll Call...I visit the site periodically. My dad died in Feb 2008...seems like yesterday. I agree with the other comments about the " what ifs " . If I knew then, what I know now.....but I didn't and we did the best we could. You learn alot on this journey. My thoughts go out to all of you who have and who are going down this path. Be gentle with yourself and your loved one. Best to you all, , Daughter of Bill > > > > Hello, I just joined this group yesterday. I am caregiver to my husband Ron who > > was dx'd with LBD one year ago this month. We went through 2 Neurologists before > > we finally got one we are happy with. We live in Colorado Springs and the latest > > doctor is in Denver at University Medical Center. Ron has struggled with several > > meds before finding something that seems to help. Before we knew the dx, the > > first Neuro prescribed Mirapex and it had a very bad effect on him. His very > > mild hallucinations became huge ones because of that med. It even led us to the > > ER that time. Exelon patch seemed to help but then his skin broke out and we had > > to stop that and tried the pill form. When he reached the max level he began to > > have anxiety attacks among other problems. Then we met the new doc in Denver and > > he changed his med to Namenda, and will have Aricept added next week. What a > > difference Namenda was for Ron, even without the Aricept. His cognizance is much > > clearer, although still fluctuating at times. > > > > I am also a member of the yahoo group LBD_caring spouses. I think that these > > support groups are such a blessing. I have learned a lot from that group and I > > am sure I will also learn from this one. I am hoping to get my daughter to join > > here as well. > > > > A bit about us... I am 64, soon to turn 65. Ron is 67. We originally thought he > > had Parkinson's, and even though he had cognizance issues, I was in denial about > > that part of his health for several years. He does have Parkinsonism symptoms, > > so I focused on that more when trying to obtain a dx. Then I began to learn a > > bit about LBD. I have a friend who is a Neurologist but lives too far away > > to treat Ron, I told him Ron's symptoms. He told me to ask the doctor about > > Diffuse Lewy Body. Well one thing led to another and here I am. I regret that I > > buried my head in the sand.... If I had not put off what I knew deep in the back > > of my mind, Ron could have possibly had more quality of life sooner, with the > > right treatment. > > > > nne, from Colorado > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2010 Report Share Posted November 21, 2010 Dear Ron, I am going back into the mail and saw your letter. How very sweet of you to write. You are the one I admire for hanging in there through thick and thin with your dear Mother. Thank you so much Ron for your encouragement. Love a lot young man, Imogene > > > > Hello, I just joined this group yesterday. I am caregiver to my husband Ron who > > was dx'd with LBD one year ago this month. We went through 2 Neurologists before > > we finally got one we are happy with. We live in Colorado Springs and the latest > > doctor is in Denver at University Medical Center. Ron has struggled with several > > meds before finding something tha > > [The entire original message is not included] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2010 Report Share Posted November 25, 2010 stealing that quote (for the LBDA FB page I update) Glad you're still here with us... - > > Hi Everyone > > I'm still here and read listers experiences daily. It's been 16 months since our Mom passed away ! > She was diagnosed with LBD in 2007 although suffered probably 2 years with milder symptoms of it prior to her diagnoses. > I miss Mom terribly and reading some of the Listers experiences brings back a flood of experiences/memories so similar to ours ! > This is a great group and my heart goes out to all who have lost or still have LO with this terrible disease. > > " If I listen to my heart I'll hear you laughter once more " > Isabell Bell 3/2/1936-07/30/2009 > I miss and love you Mom ! > > > Carole & Deny Konecny > www.bowbellgoldens.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2010 Report Share Posted November 25, 2010 I joined this group last year after my mother was diagnosed with LBD, which has recently been possibly rediagnosed as MSA - maybe it is her own version somewhere inbetween. Mom had a visible tremor since 2003 or 2004, which her doctor diagnosed as a familial tremor, although she began shuffling around the same time. In retrospect, she had a nervous breakdown in the early 1980's and had many unexplained falls in the early 1990's, and after that period seemed unusually tired all the time. In 2006 a family reunion made it clear how fragile she was and she had lost about 40 pounds, so my brother and I asked her to seek help. Later that winter she had a tentative diagnosis of Parkinson's and she moved to an elder home near our home in New York. That winter she suffered a heart attack and numerous falls, and rapidly accelerating decline in mental and physical function. In October of last year we moved her in with us. In the past year she has lost the ability to walk more than ten feet or so without needing to sit, and needs someone following her with a wheelchair as she walks with her walker. She also needs to be dressed, gotten into and out of bed, but she can still eat reasonably well, if slowly. Her low blood pressure did not respond well to medication and that was discontinued this summer. Her dementia is largely controlled with namenda and aricept, and she has vivid dreams but not hallucinations. Sinemet doesn't help much with her parkinson's symptoms. Her primary caregiving issues are her nearly complete incontinence and keeping her exercised sufficiently to maintain mobility. She still has a great sense of humor, and has become kinder and more gentle, although she doesn't remember dates and names well anymore. We are fortunate that we have been able to find capable and relatively affordable caregivers sufficient to enable us to go about a relatively normal life with our kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2010 Report Share Posted November 26, 2010 Thanks for the status update - as you see I'm way behind trying to respond to all the roll call posts Couple of thoughts that may be helpful: Constipation -- Fruit Eze - laxative alternative " Fruit-Eze™ fruit blend is a safe, effective, all-natural laxative alternative made of prunes, raisins, dates, and prune juice. The result of over 10 years of research, development and testing, Fruit-Eze™ pure fruit regularity blend is a highly concentrated and easily assimilated source of soluble and insoluble fruit fibers specially processed to help you to Get Going...Naturally™. Only the most delicious prunes, dates, and raisins are selected to make Fruit-Eze™. These high fiber fruits are prepared in exactly the right proportions, and in exactly the right manner, to be highly effective in promoting regularity. Moist and delicious Fruit-Eze™ fruit blend can be eaten alone, spread like jelly on toast, stirred into juice, or combined with food. " (personally haven't tried it...) http://www.fruit-eze.com/ Homemade Recipe for Constipation by Arlene http://health.groups.yahoo.com/group/LBDcaregivers/message/61226 ---- Pain Non Verbal Signs of Pain Here are nonverbal signs of pain that you can watch for. http://health.groups.yahoo.com/group/LBDcaregivers/message/90263 What is the painkiller of choice for LBD? Detailed post http://health.groups.yahoo.com/group/LBDcaregivers/message/71426 Dr. Gomperts answer Dr. Gomperts said: " Acetaminophen (Tylenol) and ibuprofen (Motrin) are preferable for mild pain. For more severe pain, Darvocet (Darvon) or Ultram may be preferable to oral opiates. When an IV pain medication is required, the shorter acting the better (as any side effects, such as confusion, may be short lasting). " To read in its entirety, read the Q & A Transcript located in the LBDA folder. http://www.lbda.org/category/3515/chat-transcripts.htm --- Hospital Bed Don't forget Craigslist & Freecycle - you may get lucky by just posting you need one and someone wants to get rid of one fast. Could even get for free. > > I and husband are caring for my 93 old mother in law. She was diagnosed 3 > years ago and before that we were told she had dementia. The LBD and > Parkinson's was the new information that fit the picture to a " T " of what > we have been struggling with the last 7 years. My mil had trouble several > years before and I really wonder what was going on then – she was anorexic > for the last 20+ years, and she fell a lot as she had very little balance. > I don't know where we are now in stages except a lot of things are late > stage, more and more it seems. > > > > This week has been very difficult to say the least. She is still ambulatory > but perhaps barely as it is a struggle to coach her to lift her feet, take > big steps, don't reach for the wall (that's more than 3 feet away) don't sit > down etc. She doesn't know when she's about to have a bm or finished with > one. The constipation is constant – the bowel is just not moving it > through. Have tried the ducolax sup several times as directed by her docs > and nothing. She's very confused, out of it and very very crabby. She is > biting all our heads off regularly. Several times this weekend her > breathing is rough – it's like she's forgetting how to breath. The > nebulizer no matter what we have tried as far as passiveness she hears that > droning motor and starts huffing and puffing. I thought I was imagining > things until I tried many times just switching it on and seeing and yes, > the sound makes her start panting hard like she does when the mask is on > her. We are now just doing the neb with mask while she is lying down > comfortable and hope she'll go to sleep and sometimes she does but then > starts the hard panting again to the point of hyperventilating and making > herself sick. Most of the time when I take the mask off she doesn't even > realize it's off and still breaths like a runaway train. The giant hiatal > hernia is causing the same problems with nausea and pain from excess gas and > we keep trying to get her to sit or stand up straight so she'll belch and > relieve the pressure – this on top of the very small meals, etc. She > doesn't remember why or understand why her stomach hurts. And as far as > trying to explain why she feels bad and how that relates to what she's doing > it's not getting through the fog though she nods and acts like she > understands. She is groaning almost constantly now – and we are > constantly trying to figure out what the groaning is for. Pain? Nausea? > Hungry? Need to go to bathroom? None of the above? I've asked her why > she is groaning so much – she says it's a habit. Or she says I didn't groan > I said (something). I give her feedback – you just started groaning, are > you trying to say something? Yes, she was saying she wants some Jello. I > tell her it didn't sound like that but I'm very glad you can tell me you > would like jello. So this is the speech thing I read about I guess. > > > > We have been working hard to keep her body strong and preserve her ability > to move as much as possible but now we're watching it take her mind away a > lot more and her ability to control her body. This afternoon as I was > trying to get her to do her leg lifts she said she was done she didn't want > anymore. I asked her what she was talking about - done with these exercises > or done for the day… she said " everything! " . She meant everything too. > She said she doesn't want to be alive anymore, it's too hard, she's done. > > > > At the same time we are strapped for finding good competent affordable > caregivers. We had one but after 5 months she messed up really bad and > didn't think it was a problem and I had to tell her not to come back. I > had the feeling she was not going to be around long when my mil started > having more and more trouble. Maybe she couldn't handle it. We have > another caregiver now for the last 2 weeks and so far ok but not as good as > I'd like. We really need an angel at this point. I have a friend also who > is helping a little. We are still going to try to go see my folks for the > weekend and have a grant from an local non profit to go towards respite > care. My folks are just a couple hours drive away but it may as well be 20 > hours it's so hard to get away anywhere. I hope to go with my mother to > the Mandarin festival in Auburn – which we've done every year. Usually > she's the one needing a sanity break (my father's knee replacement was an > ordeal!) but now I'm really looking forward to it also… afraid to look > forward to it too much because it might jinx it. > > > > My mil's doctor says she is not ready yet for hospice, they will expect she > is in a lot worse condition. I'm wondering maybe try seraquel again and > start out really low. She didn't do well with the lowest dose pill but > maybe if I cut it in quarters she could do better with a quarter of it? > She's taking Remeron now at night and after several attempts I had to start > her on a quarter pill for two weeks before I could go to half a pill and > it's helping her at night as far as I can tell she relaxes a little and then > sleeps some. Otherwise she is up all night tossing/turning/agitated. Her > doc said ¼ pill wouldn't do anything but it really did a lot and she was > pretty knocked out for the first 4 days before it started to improve to > where she could sleep some at night and function in the day. That was about > two months ago and now she is still sleeping some of the night but thrashing > more too and some days barely coherent. I got pipe insulation foam and > padded her bed with it and used vet wrap tape to hold it on. That way the > bed rail functions but it doesn't bruise her when she hits it all the time. > She grips it at night like she's on some kind of amusement park ride > (mystery to us why) her arm was just black and blue all over because of it. > That was a good idea that worked at least. > > > > I think we are close to being able to get another hospital bed through > medicare and wondering if there are really any choices from the rack they > sent before that was bent and rusted and I fight everyday. And if I should > try to spring for an automatic version because I know I will not be able to > crank it manually. And then wondering about practical things to come… > and hoping we really do get a break this weekend, we could really use it. > If this reads like a " report from the front line " it is – we are really > feeling it now. > > > > Dorothy and Art > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2010 Report Share Posted November 26, 2010 Sheila - thank you for posting your status update. I'm sorry your mom is doing so poorly. Just keeping loving her and she will know that she is not alone. I think most of us didn't 'see' LBD until it was in our face constantly - most of us can look back (years at a time) w/ our Lewy-savvy 20/20 and realize those small signs we missed. Glad you're here though - > > Hi, All, > > My mother was one of those LBD patients who has had precipitous declines in function. When my father died (suddenly of a hemorrhagic stroke) in 2006, we moved my mother, still not diagnosed with LBD, from TX to live with my husband and me in Indiana. With all those changes, the worst being the loss of my dad, Mom's level of functioning plummeted and the hallucinations began within two months of my dad's passing. > > Like so many others here, I delayed getting her to a neurologist, blaming her symptoms on her grief as well as her vision problems (decades of glaucoma). After struggling for a year with hallucinations, urinary incontinence, and wandering at night, the first visit with a neuro gave us a name for all this, as well as that precious drug, Seroquel. Her level of functioning actually increased in those first five months on Seroquel and the medication also kept her nasty hallucinations at bay. > > Mom had another huge decline in January, 2008. While recovering from pneumonia, she " collapsed " (yes, that was the dr's dx after a 4 day hospitalization and many tests), and had a seizure. By the time we got her back home she could not walk (and that was without any new meds in the hospital), but could still bear weight to transfer. Two months of that routine and she was no longer bearing weight. > > Mom has been bedbound since January, 2008, needing assistance in all ADLs. She no longer knows who I am or where she is. > > Just today she has gone to a new low. She was unconscious and unresponsive until about 1PM today and then only quietly mumbling, but unable to accept fluids. Finally, just an hour ago she was alert enough to drink 6 oz. of cranberry juice. She normally takes her meds crushed and stirred into chocolate pudding, but since I'm not willing to risk aspiration, today is a " drug holiday. " (Oliver Sacks, M.D. described his use of this in Awakenings.) > > We're in unexplored territory here at my house, but a HUGE thank you to all of you awesome people who have posted here and educated us all on what to expect. Many of you have been here and done this and, if you don't mind, I'll be continuing to draw on your experience and courage. Please keep posting often. > > Thank you, > Sheila in IN > > daughter of Louise, age 88, dx LBD 7/2007 > > Seroquel > > 9AM - 37.5 mg. > > 3PM - 62.5 mg. > > 9PM - 100 mg. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 Wow Marilyn. Like dealing w/ LBD isn't difficult enough - there's family issues too. You are handling it like a champion though and your brother is so lucky to have you. Sending positive vibes your way and may that X leave you alone... > > Hi > I am the second youngest in a family of seven, six girls and one boy. My oldest sister passed away from colon cancer in 2008. A year prior to that I noticed my brother, the second oldest, was showing signs of memory loss. In hind sight I see that there > were signs earlier than that really. I am his POA and only care giver. After 17 year of marriage his wife tossed him aside once her children had their citizenship and had graduated from college. He had set his life up around what he thought was his new family and looked to retired and enjoy family life. But instead was left on his own. > > He moved to independent living and worked until 2008, age 74. Last year he moved to another independent living apartment complex about 1/4 mile from us. His memory issues continued to get worse. His PC physician put him on Aricept and I set up an appointment for him with a Geriatric Specialist. After testing and interview he was diagnosed with Alzheimer's type Dementia. > > I have spend endless hours with him for the past few years and looked into his eyes in his deepest darkest times of paranoia, fear, anxiety and total confusion. I have been called a lier, cheater, stealer and heard him pass on stories about me doing these things. I know that when he says the things he truly believes them and feels he has > seen me do the things. For these reason I question the diagnosis of Alzheimer's type Dementia. I was the care giver for my Mom and Aunt and worked with seniors with Alzheimer's type dementia and my brother, God Bless him, is by far the most challenging I have ever seen. > > By the Grace of God I was able to find a wonderful Assisted Living facility that provides the safest and healthiest quality of living available to him. I planned everything to allow him to think he was in control of making all the choices when in fact it was a done deal. > If he would not have gone along with it my only choice would have been to take him to court and go for Guardianship. But we were blessed and so far so good. > > He still has bouts of paranoia and lots of confusion but with a smaller studio apartment and a scheduled day he is happier and his " rants and bouts " are not as severe as they had been. I feel there is less chance for over stimulation in this setting > and that has lessened his anxiety. > > I worked hard at covering his move because his Xwife has followed his moves before this. She is a money hungry witch with a cash register where ones heart usually is. She would stop at nothing to set him up to get his money or have him sign papers for a " new/her " Will. My sisters who have had no contact with him or helped him through any of his life challenges suddenly feel they should have total access to him. I have kept his location and phone number confidential so far. > This is the safest and most comfortable he has been in ages. I cannot afford to have someone, accidentally, rock his boat. He deserves better than that and once the boat is rocked they are gone, never to be seen to help clean or pick up the pieces. > > As long as he is healthy, happy and safe my heart is clear with all the decisions I have made for him. I take one day at a time and don't look back or worry about whats ahead. > > I may not post a lot but I am so very thankful for this Group and all its members. > Thank You > Marilyn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 Genelda - How come your daughter doesn't want her husband to be seen by a doctor? There are things the doctor can do to not only help him but help the household b/c he will be helping your SIL. Even if it's not prescribing medicine - he will make suggestions for physical & occupational therapy... Things to do for the home to make it a safe environment. He is so young! How awful for him. My heart goes out to him. - > > > To: <LBDcaregivers > > Subject: Roll call > Date: Sun, 14 Nov 2010 20:37:55 -0800 > > I and husband are caring for my 93 old mother in law. She was diagnosed 3 > years ago and before that we were told she had dementia. The LBD and > ParkinsonÂ's was the new information that fit the picture to a  " T " of what > we have been struggling with the last 7 years. My mil had trouble several > years before and I really wonder what was going on then – she was anorexic > for the last 20+ years, and she fell a lot as she had very little balance. > I donÂ't know where we are now in stages except a lot of things are late > stage, more and more it seems. > > > > This week has been very difficult to say the least. She is still ambulatory > but perhaps barely as it is a struggle to coach her to lift her feet, take > big steps, donÂ't reach for the wall (thatÂ's more than 3 feet away) donÂ't sit > down etc. She doesnÂ't know when sheÂ's about to have a bm or finished with > one. The constipation is constant – the bowel is just not moving it > through. Have tried the ducolax sup several times as directed by her docs > and nothing. SheÂ's very confused, out of it and very very crabby. She is > biting all our heads off regularly. Several times this weekend her > breathing is rough – itÂ's like sheÂ's forgetting how to breath. The > nebulizer no matter what we have tried as far as passiveness she hears that > droning motor and starts huffing and puffing. I thought I was imagining > things until I tried many times just switching it on and seeing and yes, > the sound makes her start panting hard like she does when the mask is on > her. We are now just doing the neb with mask while she is lying down > comfortable and hope sheÂ'll go to sleep and sometimes she does but then > starts the hard panting again to the point of hyperventilating and making > herself sick. Most of the time when I take the mask off she doesnÂ't even > realize itÂ's off and still breaths like a runaway train. The giant hiatal > hernia is causing the same problems with nausea and pain from excess gas and > we keep trying to get her to sit or stand up straight so sheÂ'll belch and > relieve the pressure – this on top of the very small meals, etc. She > doesnÂ't remember why or understand why her stomach hurts. And as far as > trying to explain why she feels bad and how that relates to what sheÂ's doing > itÂ's not getting through the fog though she nods and acts like she > understands. She is groaning almost constantly now – and we are > constantly trying to figure out what the groaning is for. Pain? Nausea? > Hungry? Need to go to bathroom? None of the above? IÂ've asked her why > she is groaning so much – she says itÂ's a habit. Or she says I didnÂ't groan > I said (something). I give her feedback – you just started groaning, are > you trying to say something? Yes, she was saying she wants some Jello. I > tell her it didnÂ't sound like that but IÂ'm very glad you can tell me you > would like jello. So this is the speech thing I read about I guess. > > > > We have been working hard to keep her body strong and preserve her ability > to move as much as possible but now weÂ're watching it take her mind away a > lot more and her ability to control her body. This afternoon as I was > trying to get her to do her leg lifts she said she was done she didnÂ't want > anymore. I asked her what she was talking about - done with these exercises > or done for the dayÂ… she said  " everything! " . She meant everything too. > She said she doesnÂ't want to be alive anymore, itÂ's too hard, sheÂ's done. > > > > At the same time we are strapped for finding good competent affordable > caregivers. We had one but after 5 months she messed up really bad and > didnÂ't think it was a problem and I had to tell her not to come back. I > had the feeling she was not going to be around long when my mil started > having more and more trouble. Maybe she couldnÂ't handle it. We have > another caregiver now for the last 2 weeks and so far ok but not as good as > IÂ'd like. We really need an angel at this point. I have a friend also who > is helping a little. We are still going to try to go see my folks for the > weekend and have a grant from an local non profit to go towards respite > care. My folks are just a couple hours drive away but it may as well be 20 > hours itÂ's so hard to get away anywhere. I hope to go with my mother to > the Mandarin festival in Auburn – which weÂ've done every year. Usually > sheÂ's the one needing a sanity break (my fatherÂ's knee replacement was an > ordeal!) but now IÂ'm really looking forward to it alsoÂ… afraid to look > forward to it too much because it might jinx it. > > > > My milÂ's doctor says she is not ready yet for hospice, they will expect she > is in a lot worse condition. IÂ'm wondering maybe try seraquel again and > start out really low. She didnÂ't do well with the lowest dose pill but > maybe if I cut it in quarters she could do better with a quarter of it? > SheÂ's taking Remeron now at night and after several attempts I had to start > her on a quarter pill for two weeks before I could go to half a pill and > itÂ's helping her at night as far as I can tell she relaxes a little and then > sleeps some. Otherwise she is up all night tossing/turning/agitated. Her > doc said ¼ pill wouldnÂ't do anything but it really did a lot and she was > pretty knocked out for the first 4 days before it started to improve to > where she could sleep some at night and function in the day. That was about > two months ago and now she is still sleeping some of the night but thrashing > more too and some days barely coherent. I got pipe insulation foam and > padded her bed with it and used vet wrap tape to hold it on. That way the > bed rail functions but it doesnÂ't bruise her when she hits it all the time. > She grips it at night like sheÂ's on some kind of amusement park ride > (mystery to us why) her arm was just black and blue all over because of it. > That was a good idea that worked at least. > > > > I think we are close to being able to get another hospital bed through > medicare and wondering if there are really any choices from the rack they > sent before that was bent and rusted and I fight everyday. And if I should > try to spring for an automatic version because I know I will not be able to > crank it manually. And then wondering about practical things to comeÂ… > and hoping we really do get a break this weekend, we could really use it. > If this reads like a  " report from the front line " it is – we are really > feeling it now. > > > > Dorothy and Art > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 <snip> As I sit up nights with her, I still compose letters in my head to those doctors about their negligence and errors made with my mil to let them know that it does make a big difference – even if there is no cure. <snip> I, too, needed a name. And YES it makes a big difference in the treatment & care. Good for you - hope those letters get out one day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 <snip> My sister and I traveled to Seattle in October to participate in studies being conducted at the Pacific Northwest Udall Center for Excellence in Parkinson's Research; 2 days encompassing 14 hours. Both biomarker and genetic studies. These make the 9th and 10th studies we've done within the last three years. <snip> THANK YOU :) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 Well said ! :) > > > Checking in on Roll Call...I visit the site periodically. My dad died in Feb 2008...seems like yesterday. I agree with the other comments about the " what ifs " . If I knew then, what I know now.....but I didn't and we did the best we could. You learn alot on this journey. My thoughts go out to all of you who have and who are going down this path. Be gentle with yourself and your loved one. > > Best to you all, > , Daughter of Bill > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2010 Report Share Posted November 27, 2010 Thank you for sharing Have you met Norma in NYC? Maybe you'd be interested in her local support group meetings... http://www.lbda.org/category/4185/local-support-groups.htm#New_York even being part of her email list I'm sure would be helpful... if you don't live close by her meetings, she may have members in her group close to you... just a thought > > I joined this group last year after my mother was diagnosed with LBD, which has recently been possibly rediagnosed as MSA - maybe it is her own version somewhere inbetween. Mom had a visible tremor since 2003 or 2004, which her doctor diagnosed as a familial tremor, although she began shuffling around the same time. In retrospect, she had a nervous breakdown in the early 1980's and had many unexplained falls in the early 1990's, and after that period seemed unusually tired all the time. In 2006 a family reunion made it clear how fragile she was and she had lost about 40 pounds, so my brother and I asked her to seek help. Later that winter she had a tentative diagnosis of Parkinson's and she moved to an elder home near our home in New York. That winter she suffered a heart attack and numerous falls, and rapidly accelerating decline in mental and physical function. In October of last year we moved her in with us. In the past year she has lost the ability to walk more than ten feet or so without needing to sit, and needs someone following her with a wheelchair as she walks with her walker. She also needs to be dressed, gotten into and out of bed, but she can still eat reasonably well, if slowly. Her low blood pressure did not respond well to medication and that was discontinued this summer. Her dementia is largely controlled with namenda and aricept, and she has vivid dreams but not hallucinations. Sinemet doesn't help much with her parkinson's symptoms. Her primary caregiving issues are her nearly complete incontinence and keeping her exercised sufficiently to maintain mobility. She still has a great sense of humor, and has become kinder and more gentle, although she doesn't remember dates and names well anymore. We are fortunate that we have been able to find capable and relatively affordable caregivers sufficient to enable us to go about a relatively normal life with our kids. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2010 Report Share Posted November 28, 2010 Thank you . Sorry I have not been able to sign online it has been too demanding and I am exhausted. - Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Sent: Saturday, November 27, 2010 6:17 AM To: LBDcaregivers Subject: Re: Roll Call <snip> As I sit up nights with her, I still compose letters in my head to those doctors about their negligence and errors made with my mil to let them know that it does make a big difference - even if there is no cure. <snip> I, too, needed a name. And YES it makes a big difference in the treatment & care. Good for you - hope those letters get out one day. __________ Information from ESET Smart Security, version of virus signature database 5646 (20101124) __________ The message was checked by ESET Smart Security. http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2010 Report Share Posted November 30, 2010 Joan - don't be discouraged w/ the small #s for your support group... My group started w/ just 3 other MA folks ... now there's over 80+ active members... It took about 4-5 months before a successful group was formed... my first meeting it was just me ( & mom's spirit) - think it was supposed to work out that way since it was the first time I was using mom's nursing home as a meeting spot since her passing... > > Sorry I am so late. I had many things going on and it appears that I haven't read posts for almost a month now! > > My name is Joan Croft, and I cared for my mother, Dolores. I had lived with her my entire life, and at first there were no 'warning signs' of anything except for forgetting something here, losing something there, etc. I did notice that she bagan to ask questions and I would turn it around like I didn't know. She was very creative by saying something like 'I was just seeing if you knew.' > There were a few times when something very stressful was going on that she would think that I was my sister or something. I was very ill from environmental allergies and was not supposed to be living in the area that I was. Mom did't quite understand how ill I was in the beginning and then when it got so bad, she could not understand because of LBD. But...in December 2007, we drove from the San Diego, CA area to the Las Vegas, NV area to look for me to buy a house that we could drive to on the weekends in the hopes that two days a week would give me some relief from the serious respriatory problems that I had. We had talked about moving...she didn't want to; so then finally in desperation I came up with the going back and forth on weekends option. I don't know what she felt...she could have felt that I was going to move here and leave her there alone; she could have thought that despite what I said about her not moving and we just come on the weekends, that I was going to make her move. I don't know, but that was the day of the first BIG happening that made me know that this was something more than just aging and forgetting some things. > She looked very tired all day and the real estate agent even asked me if she was OK. I just thought getting up so early and driving 325 miles that she was tired. She looked at the houses with me, she claimed where she wanted her organ to be, she told me that if I bought this house she would want to move, etc. But after I signed all the papers and we were pulling into the hotel parking lot, she asked me why we were there. I told her we were going to spend a couple of days here before going back. She asked if I had reservations and I told her that I did, and then she asked me how mnay rooms. When I told her one, she said she couldn't sleep in the same room with a boy. I looked at her and said...it's me...it's Joan. She said 'oh, yeah!'. > When I parked, she asked if she could use my cell phone so that she could call her Mamma and tell her that she wasn't coming home tonight. I told her 'Grandma died 35 years ago, and she said, 'not your grandma, MY grandma'. I had to tell her that her I am her daughter and her mama is my grandma. She started to cry and asked me why I never told her. Then in the hotel lobby she asked to use my phone again and called my brother...she asked him if her mother and father were dead. He said yes, of course and then she was crying in the lobby. > When we got into the room, she knew what had happened but didn't know why. We were going to go home early and take her to the doctor but the next morning she said she was feeling better now. > She was very quiet for the next month and I thought it was because I was buying the house...wasn't really sure, but afraid to press the issue. On Christmas I tried to take her picture but she wouldn't smile...then she went into the bathroom and looked in the mirror and I could tell she was trying...but she couldn't get her lips to move to smile. I didn't understand it...and then later that day she was normal again. After the house sale was final and she came with me on a weekend, she would have little violent outbursts in the car; talk about how my SIL was so nice to her over the weekend (when it was really me) etc. > One of the violent rides back to CA, my brother and sister both convinced me to take her to the ER. They examined her said she had ALZ and that she should be evaluated at their sister hospital geriatric psychiatric ward. I said that I had MPOA but they told me it wasn't good for mental cases. I brought her home high on something that is not a good LBD drug and she talked alphabet soup about everything that happened in the last three days all mixed up in the same sentences. A few days later I called my attorney to find out what I could do to get her help...the gal at the hospital had given me bad advice and Mom's documents had been prepared for over 3 years when she was not exhibiting signs of dementia. That Friday, she had big hallucinations about not being in her house and I had to try to talk her through it as I tried to leave the office to get home. She wanted me to call the police, but I callled my sister to talk to her and my sister called back and told me to call because she was very scared. > One patrol officer and one PERT officer went to the house and stayed with her until I got home...they said she could no longer stay alone. My brother was coming in 2 days from Boise, so we decided to wait until Monday to take her to the other hospital. When we did, she was very mad at us, and my sister who purposely did't go, came later - she was on Mom's good list and we were not! It didn't last long because after she was admitted, the psychiatrist came to the table that we were sitting at and asked what had been going on and we told my sister to tell him...now she was on the bad list - because Mom didnt' believe any of it! > After being admitted her emotions went way high and way low...they had a hard time controlling because she only had LBD times once in a while and they were messing with 'Normal Mom' most of the time and very seldom 'LBD Mom'. But...they had her on Risperadol and something else and they wanted me to take her for a consult to a couple new young doctors at the new Center for Memory and Aging. The testing took a couple weeks before diagnosis of LBD. All this time she is taking the Risperadol and it isn't doing too many good things for her. She got home from the hospital and had to tell me to put the clothes on the bed in the order that she was supposed to put them on; she was afraid to go to the bathroom alone, etc. > Mom had her first appt with the Psychiatrist about a week after her LBD diagnosis and he changed her meds, but not soon enough. Mom started to have urinary problems and they also found out that she had something wrong with her parathyroid. So when in the hospital for that they gave her Haldol (supposedly after talking to her neurologist). That was the first time that I saw the jerks in her. She came home on a Saturday and the following Wednesday she was very ill again. I had to take her back to the hospital and the following day we were told that she was in teh dying process. So...she didn't go all the way on the LBD journey, but I lost her anyway. > My only regret is that I had never heard anything about LBD to know the symptoms and make sure that she got proper treatment from the start...a regret, but not my fault! > > Mom had started calling me 'Mother' about a year before this first hospitlalization...after she was in the psych ward a couple of days, she was talking to me and started to call me 'Mother', but before I could say 'I'm not your mother' she said.... > 'I know you aren't my mother...I know that my mother is dead. But sometimes things happen when you want your mother and those times I like to think of you as my mother!'. I have that memory in my heart and it will never leave...most likely the most beautiful words that I have ever heard uttered. > > I have moved full time to North Las Vegas, NV and so has Mom's spirit. I have a friend who can feel spirits and when she touched the last photograph that I have of Mom, she told me that she was very happy there...I was ready to tell her that she didn't know what she was talking about...and then she added that she was happy because she knew that she was 'going home' and would no longer be living that way taht she was, and that she didn't want to live that way. > I have recently become a facilitator for a LBD Caregiver Support Group here in the Las Vegas area with Deb Sgambati as my co-facilitator. I am still trying to get one more member so that we can be a 'group', but I have good ideas of how and where to get the information out about the group. > > For all out there that still have your loved ones...cherish every good moment that you can...cherish each holiday, each family gathering! > For all out there whose loved ones have passed through the door to eternal life, remember the good times, let a tear drop if you need to, they are cleansing tears. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2010 Report Share Posted December 14, 2010 , It is for a lot of reasons. When all this started their primary physcian under Tricare ( is retired military) tried to help as much as possible. My SIL was referred to Duke University where it took them a long time to dx Mild cognitive Impairment! He continued seeing them about every 6 months and was eventually dx with Alzhiemers. The primary physician then referred him to a psychiatrist. That is when the Hydrocepholus came up and he was referred to someone else. Then when that proved to be the wrong dx, my daughter talked to the primary care physician about LBD as we had researched his symptoms so much on the internet. Primary care Dr. Agreed that this might be the true disease and referred him to another psychiatrist, who agreed with the dx but it was not in his area of experience and he wasn't interested in helping. At this time The primary care physician decided not to accept Tricare anymore as they were always late in making benefit payments and weren't approving recommendations for treatment of patients. My daughter and SIL were then assigned a primary care physician clinic that isn't even allowed to prescribe pain medication. ( My SIL broke my daughters finger, Pain was intense, she saw the primary care physician who couldn't even prescribe pain medication while she waited to see an orthopedic surgeon. In their application for a referral from Tricare to have my daughter oerated on, they must have filled it out wrong but her referral was for 3 weeks later at a place over 60 miles from home and she couldn't drive herself. She had a few things to say to that clinic, and got her appt for surgery, but it was a number of days and the finger had to be rebroken in order to set it. Due to complications the finger did not set correctly and the surgeon wanted to break it again and give it another try. My daughter vetoed that idea and now has a finger that looks strange and that she cannot use.) We had tried to get my SIL referred to a doctor who had published articles on LBD. Their was a six month wait to see him, so the clinic tried another psychiatric clinic in Virginia Beach. My daughter took him for that appt and they didn't even keep him very long as it was simply for an assessment for dx of his condition. Apparently they sent their finding to the primary care clinic who notified my daughter that they would go over the findings with the last psychiatrist my SIL had seen and get back to her after what was to be done was decided. That was Last July. We need to get a better primary care physician assigned to my daughter and SIL, who will refer them to a LBD knowledgable practioner. My daughter is very discouraged, depressed, grieving, and seems to have given up. My SIL is fully into Phase 4 and some of Phase 5. Tonight when she was putting him to bed, he started hitting her with both fists as hard as he could. Then he grabbed her hand and started twisting her thumb back before we got him stopped. There was no argument, She had cleaned him up for bed. There was no reason for him to attack her! I can't contact Tricare to get her primary care physician changed. But I have found a few physicians in the greater area that might know something about LBD, However, we don't know if they accept Tricare or if Tricare would let them change their primary physician. Kind of up a creek without a paddle. octoryrose@... wrote: To: LBDcaregivers Subject: Re: Roll call Date: Sat, 27 Nov 2010 14:11:47 -0000 Genelda - How come your daughter doesn't want her husband to be seen by a doctor? There are things the doctor can do to not only help him but help the household b/c he will be helping your SIL. Even if it's not prescribing medicine - he will make suggestions for physical & occupational therapy... Things to do for the home to make it a safe environment. He is so young! How awful for him. My heart goes out to him. - > > > To: <LBDcaregivers > > Subject: Roll call > Date: Sun, 14 Nov 2010 20:37:55 -0800 > > I and husband are caring for my 93 old mother in law. She was diagnosed 3 > years ago and before that we were told she had dementia. The LBD and > ParkinsonÂ's was the new information that fit the picture to a  " T " of what > we have been struggling with the last 7 years. My mil had trouble several > years before and I really wonder what was going on then – she was anorexic > for the last 20+ years, and she fell a lot as she had very little balance. > I donÂ't know where we are now in stages except a lot of things are late > stage, more and more it seems. > > > > This week has been very difficult to say the least. She is still ambulatory > but perhaps barely as it is a struggle to coach her to lift her feet, take > big steps, donÂ't reach for the wall (thatÂ's more than 3 feet away) donÂ't sit > down etc. She doesnÂ't know when sheÂ's about to have a bm or finished with > one. The constipation is constant – the bowel is just not moving it > through. Have tried the ducolax sup several times as directed by her docs > and nothing. SheÂ's very confused, out of it and very very crabby. She is > biting all our heads off regularly. Several times this weekend her > breathing is rough – itÂ's like sheÂ's forgetting how to breath. The > nebulizer no matter what we have tried as far as passiveness she hears that > droning motor and starts huffing and puffing. I thought I was imagining > things until I tried many times just switching it on and seeing and yes, > the sound makes her start panting hard like she does when the mask is on > her. We are now just doing the neb with mask while she is lying down > comfortable and hope sheÂ'll go to sleep and sometimes she does but then > starts the hard panting again to the point of hyperventilating and making > herself sick. Most of the time when I take the mask off she doesnÂ't even > realize itÂ's off and still breaths like a runaway train. The giant hiatal > hernia is causing the same problems with nausea and pain from excess gas and > we keep trying to get her to sit or stand up straight so sheÂ'll belch and > relieve the pressure – this on top of the very small meals, etc. She > doesnÂ't remember why or understand why her stomach hurts. And as far as > trying to explain why she feels bad and how that relates to what sheÂ's doing > itÂ's not getting through the fog though she nods and acts like she > understands. She is groaning almost constantly now – and we are > constantly trying to figure out what the groaning is for. Pain? Nausea? > Hungry? Need to go to bathroom? None of the above? IÂ've asked her why > she is groaning so much – she says itÂ's a habit. Or she says I didnÂ't groan > I said (something). I give her feedback – you just started groaning, are > you trying to say something? Yes, she was saying she wants some Jello. I > tell her it didnÂ't sound like that but IÂ'm very glad you can tell me you > would like jello. So this is the speech thing I read about I guess. > > > > We have been working hard to keep her body strong and preserve her ability > to move as much as possible but now weÂ're watching it take her mind away a > lot more and her ability to control her body. This afternoon as I was > trying to get her to do her leg lifts she said she was done she didnÂ't want > anymore. I asked her what she was talking about - done with these exercises > or done for the day… she said  " everything! " . She meant everything too. > She said she doesnÂ't want to be alive anymore, itÂ's too hard, sheÂ's done. > > > > At the same time we are strapped for finding good competent affordable > caregivers. We had one but after 5 months she messed up really bad and > didnÂ't think it was a problem and I had to tell her not to come back. I > had the feeling she was not going to be around long when my mil started > having more and more trouble. Maybe she couldnÂ't handle it. We have > another caregiver now for the last 2 weeks and so far ok but not as good as > IÂ'd like. We really need an angel at this point. I have a friend also who > is helping a little. We are still going to try to go see my folks for the > weekend and have a grant from an local non profit to go towards respite > care. My folks are just a couple hours drive away but it may as well be 20 > hours itÂ's so hard to get away anywhere. I hope to go with my mother to > the Mandarin festival in Auburn – which weÂ've done every year. Usually > sheÂ's the one needing a sanity break (my fatherÂ's knee replacement was an > ordeal!) but now IÂ'm really looking forward to it also… afraid to look > forward to it too much because it might jinx it. > > > > My milÂ's doctor says she is not ready yet for hospice, they will expect she > is in a lot worse condition. IÂ'm wondering maybe try seraquel again and > start out really low. She didnÂ't do well with the lowest dose pill but > maybe if I cut it in quarters she could do better with a quarter of it? > SheÂ's taking Remeron now at night and after several attempts I had to start > her on a quarter pill for two weeks before I could go to half a pill and > itÂ's helping her at night as far as I can tell she relaxes a little and then > sleeps some. Otherwise she is up all night tossing/turning/agitated. Her > doc said ¼ pill wouldnÂ't do anything but it really did a lot and she was > pretty knocked out for the first 4 days before it started to improve to > where she could sleep some at night and function in the day. That was about > two months ago and now she is still sleeping some of the night but thrashing > more too and some days barely coherent. I got pipe insulation foam and > padded her bed with it and used vet wrap tape to hold it on. That way the > bed rail functions but it doesnÂ't bruise her when she hits it all the time. > She grips it at night like sheÂ's on some kind of amusement park ride > (mystery to us why) her arm was just black and blue all over because of it. > That was a good idea that worked at least. > > > > I think we are close to being able to get another hospital bed through > medicare and wondering if there are really any choices from the rack they > sent before that was bent and rusted and I fight everyday. And if I should > try to spring for an automatic version because I know I will not be able to > crank it manually. And then wondering about practical things to come… > and hoping we really do get a break this weekend, we could really use it. > If this reads like a  " report from the front line " it is – we are really > feeling it now. > > > > Dorothy and Art > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2010 Report Share Posted December 20, 2010 Natually, I wanted to be off and running! There have been a few roadblocks for me as well, and perhaps everything does turn out for the better. With my hospitalization and pneumonia in September I needed some time to recuperate; a couple days after Thanksgiving, I fell on the hard tile floor in my living room and hurt my knee and my entire right leg is all bruised...turns out that I tore the meniscus. Right about the time that I was feeling a little better, I did get an email from someone that apparently saw my posting on Craigs List (after a dozen or so people that wanted to sell me Viagra and a host of other products). She is going away for Christmas and will be back in contact with me when she gets back. Today, I got a phone call from another woman, who apparently got my phone number from googling and most likely popped up through the LBDA.org listing. She is also interested, and although our group does not have a date/time arranged yet, I did encourage her to join this group, peruse the LBDA.org site and to call me as often as she felt that she needed to talk before our first group meeting. I feel so good...two people in the matter of a week have contacted me. > > > > Sorry I am so late. I had many things going on and it appears that I haven't read posts for almost a month now! > > > > My name is Joan Croft, and I cared for my mother, Dolores. I had lived with her my entire life, and at first there were no 'warning signs' of anything except for forgetting something here, losing something there, etc. I did notice that she bagan to ask questions and I would turn it around like I didn't know. She was very creative by saying something like 'I was just seeing if you knew.' > > There were a few times when something very stressful was going on that she would think that I was my sister or something. I was very ill from environmental allergies and was not supposed to be living in the area that I was. Mom did't quite understand how ill I was in the beginning and then when it got so bad, she could not understand because of LBD. But...in December 2007, we drove from the San Diego, CA area to the Las Vegas, NV area to look for me to buy a house that we could drive to on the weekends in the hopes that two days a week would give me some relief from the serious respriatory problems that I had. We had talked about moving...she didn't want to; so then finally in desperation I came up with the going back and forth on weekends option. I don't know what she felt...she could have felt that I was going to move here and leave her there alone; she could have thought that despite what I said about her not moving and we just come on the weekends, that I was going to make her move. I don't know, but that was the day of the first BIG happening that made me know that this was something more than just aging and forgetting some things. > > She looked very tired all day and the real estate agent even asked me if she was OK. I just thought getting up so early and driving 325 miles that she was tired. She looked at the houses with me, she claimed where she wanted her organ to be, she told me that if I bought this house she would want to move, etc. But after I signed all the papers and we were pulling into the hotel parking lot, she asked me why we were there. I told her we were going to spend a couple of days here before going back. She asked if I had reservations and I told her that I did, and then she asked me how mnay rooms. When I told her one, she said she couldn't sleep in the same room with a boy. I looked at her and said...it's me...it's Joan. She said 'oh, yeah!'. > > When I parked, she asked if she could use my cell phone so that she could call her Mamma and tell her that she wasn't coming home tonight. I told her 'Grandma died 35 years ago, and she said, 'not your grandma, MY grandma'. I had to tell her that her I am her daughter and her mama is my grandma. She started to cry and asked me why I never told her. Then in the hotel lobby she asked to use my phone again and called my brother...she asked him if her mother and father were dead. He said yes, of course and then she was crying in the lobby. > > When we got into the room, she knew what had happened but didn't know why. We were going to go home early and take her to the doctor but the next morning she said she was feeling better now. > > She was very quiet for the next month and I thought it was because I was buying the house...wasn't really sure, but afraid to press the issue. On Christmas I tried to take her picture but she wouldn't smile...then she went into the bathroom and looked in the mirror and I could tell she was trying...but she couldn't get her lips to move to smile. I didn't understand it...and then later that day she was normal again. After the house sale was final and she came with me on a weekend, she would have little violent outbursts in the car; talk about how my SIL was so nice to her over the weekend (when it was really me) etc. > > One of the violent rides back to CA, my brother and sister both convinced me to take her to the ER. They examined her said she had ALZ and that she should be evaluated at their sister hospital geriatric psychiatric ward. I said that I had MPOA but they told me it wasn't good for mental cases. I brought her home high on something that is not a good LBD drug and she talked alphabet soup about everything that happened in the last three days all mixed up in the same sentences. A few days later I called my attorney to find out what I could do to get her help...the gal at the hospital had given me bad advice and Mom's documents had been prepared for over 3 years when she was not exhibiting signs of dementia. That Friday, she had big hallucinations about not being in her house and I had to try to talk her through it as I tried to leave the office to get home. She wanted me to call the police, but I callled my sister to talk to her and my sister called back and told me to call because she was very scared. > > One patrol officer and one PERT officer went to the house and stayed with her until I got home...they said she could no longer stay alone. My brother was coming in 2 days from Boise, so we decided to wait until Monday to take her to the other hospital. When we did, she was very mad at us, and my sister who purposely did't go, came later - she was on Mom's good list and we were not! It didn't last long because after she was admitted, the psychiatrist came to the table that we were sitting at and asked what had been going on and we told my sister to tell him...now she was on the bad list - because Mom didnt' believe any of it! > > After being admitted her emotions went way high and way low...they had a hard time controlling because she only had LBD times once in a while and they were messing with 'Normal Mom' most of the time and very seldom 'LBD Mom'. But...they had her on Risperadol and something else and they wanted me to take her for a consult to a couple new young doctors at the new Center for Memory and Aging. The testing took a couple weeks before diagnosis of LBD. All this time she is taking the Risperadol and it isn't doing too many good things for her. She got home from the hospital and had to tell me to put the clothes on the bed in the order that she was supposed to put them on; she was afraid to go to the bathroom alone, etc. > > Mom had her first appt with the Psychiatrist about a week after her LBD diagnosis and he changed her meds, but not soon enough. Mom started to have urinary problems and they also found out that she had something wrong with her parathyroid. So when in the hospital for that they gave her Haldol (supposedly after talking to her neurologist). That was the first time that I saw the jerks in her. She came home on a Saturday and the following Wednesday she was very ill again. I had to take her back to the hospital and the following day we were told that she was in teh dying process. So...she didn't go all the way on the LBD journey, but I lost her anyway. > > My only regret is that I had never heard anything about LBD to know the symptoms and make sure that she got proper treatment from the start...a regret, but not my fault! > > > > Mom had started calling me 'Mother' about a year before this first hospitlalization...after she was in the psych ward a couple of days, she was talking to me and started to call me 'Mother', but before I could say 'I'm not your mother' she said.... > > 'I know you aren't my mother...I know that my mother is dead. But sometimes things happen when you want your mother and those times I like to think of you as my mother!'. I have that memory in my heart and it will never leave...most likely the most beautiful words that I have ever heard uttered. > > > > I have moved full time to North Las Vegas, NV and so has Mom's spirit. I have a friend who can feel spirits and when she touched the last photograph that I have of Mom, she told me that she was very happy there...I was ready to tell her that she didn't know what she was talking about...and then she added that she was happy because she knew that she was 'going home' and would no longer be living that way taht she was, and that she didn't want to live that way. > > I have recently become a facilitator for a LBD Caregiver Support Group here in the Las Vegas area with Deb Sgambati as my co-facilitator. I am still trying to get one more member so that we can be a 'group', but I have good ideas of how and where to get the information out about the group. > > > > For all out there that still have your loved ones...cherish every good moment that you can...cherish each holiday, each family gathering! > > For all out there whose loved ones have passed through the door to eternal life, remember the good times, let a tear drop if you need to, they are cleansing tears. > > > Quote Link to comment Share on other sites More sharing options...
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