tag:blogger.com,1999:blog-1074151567956258470.post4827112473557630742..comments2023-09-28T03:00:38.999-07:00Comments on The Lewy Body Rollercoaster: Nearing the End of the LBD JourneyThe Whitworths of Arizonahttp://www.blogger.com/profile/04887677292107869890noreply@blogger.comBlogger69125tag:blogger.com,1999:blog-1074151567956258470.post-37894344077128115472018-10-22T04:35:52.377-07:002018-10-22T04:35:52.377-07:00oooh i feel a bit better reading all your messages...oooh i feel a bit better reading all your messages and experiences. I want to understand where my father is at. He is 80, in late stages of LBD, cant talk, not been able to walk for 2 years. Cant go to the toilet, stares into space or at the tv all the time - even when its not on, sleeps about 16 hours a day maybe more.. cant swallow a lot of the time and the list goes on.. losing weight rapidly. This thing is, he has now been out of the nursing home and in hospital for just over 1 month with golden staf. it doesn't seem to be getting better and while we get moments of my dad back, we are literally trying to keep him alive and the staf infection from getting worse. But it does not seem to be getting better. pumping him full of iron, good cells and blood, flushing things into his body trying to keep his fluids up, disease down, temperature down. Whats the point? I dont want to see him like this. Hes sat in a shitty hospital room for 16 days straight. I wanted to take him for a wheelchair outside, but his bum hurts too much to even sit in a wheelchair. How much longer does this have to go on.. my poor mother sits there everyday with no conversation and caring for him like a baby. Its heartbreaking. We've just nursed my sister to death this March with breast cancer. Does anyone have any insight to what we might expect. Will he recover and this go on for years.. or are we heading towards final stages... he is about 5 years in, since he started declining and its like he is stabilised at the nursing home and hospital as "really crap". But its a slow decline from here... any advice would be really appreciated :) . Love to everyone else watching and going through this - I have to say this is one of the cruelest diseases I have seen. I think it might even be worse than watching my sister die of breast cancer. And that was pretty bad.<br />Anonymoushttps://www.blogger.com/profile/14500827441807691335noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-23456201776175299912018-07-07T17:34:24.445-07:002018-07-07T17:34:24.445-07:00That is a common symptom of LBD when they feel the...That is a common symptom of LBD when they feel their spouse had been unfaithful. Just know that it is the disease making her think that not you true partner❤️Anonymoushttps://www.blogger.com/profile/16658932919316395936noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-67151175448602409102018-06-08T11:39:11.932-07:002018-06-08T11:39:11.932-07:00My mother is in the final stages of Lewy Body. Sh...My mother is in the final stages of Lewy Body. She will turn 74 in 2 weeks if she makes it. She was diagnosed 4 years ago and was placed in a facility over a year ago. It has been a roller coaster but worth every minute of time spent with her good or bad. May God continue to bless you all. Only God knows when it's your loved ones time. In this process remember to take time for yourself. ♡ Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-34653253504789789532018-04-26T07:16:55.293-07:002018-04-26T07:16:55.293-07:00Yes, 52 is so young to be diagnosed LBD. I know i...Yes, 52 is so young to be diagnosed LBD. I know it's a challenge, the "rollercoaster" part has been the hardest on me. One week my Dad is fine and the next week I'm not sure if he'll be able to answer the door for lack of understanding that someone is knocking on it. I'm 60 and my dad is 92- men can be less cooperative than woman are. Maybe a wife/husband dynamic is less complicated than a father/daughter situation. My dad feels he's in charge and he'll do whatever he wants, end of story. In any case, I wish you strength and patients as you go through this journey. My heart breaks for you being so young. Just remember, everything you do for your husband shows how wonderful you are even though you might not get any credit for your efforts. Take Care, MaryMOhttps://www.blogger.com/profile/11663039266103344035noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-36166721318684690512018-04-24T12:16:20.027-07:002018-04-24T12:16:20.027-07:00My 52 year old husband has just been diagnosed wit...My 52 year old husband has just been diagnosed with LBD (I am 50). We believe this started about a year and a half ago. It has been a challenge to say the least! He is much to young for this.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-48131749156982922192018-03-23T05:53:42.056-07:002018-03-23T05:53:42.056-07:00I finally figured out that my Dad has LBD after ca...I finally figured out that my Dad has LBD after caring for him for almost 2 years. He was diagnosed with Alzheimer's but after I read everything I could find in the subject, not much was matching up with his symptoms. The other day I looked up tongue thrusting, which he does on occasion and I was directed to LBD. It was like a light went on in my head- Now I can follow literature that is more in-line with his condition. My father is 92 years old and has always led a healthy lifestyle- only to end up with his terrible disease. It's so sad and I'm overwhelmed.MOhttps://www.blogger.com/profile/11663039266103344035noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-74398220241861532392018-03-08T10:53:18.311-08:002018-03-08T10:53:18.311-08:00I also share your pain, my mate of 60 years has LB...I also share your pain, my mate of 60 years has LBD, for about 3 years, we moved into a assisted living together and for the most part, we are doing OK, she blames me for unfaithfulness ( I have been true in every regards but this is one way she upsets me. I will be here to the end either me of she, I love her so.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-22678540172189472532017-11-29T20:41:11.012-08:002017-11-29T20:41:11.012-08:00So sorry to hear about your mother. Couldn't s...So sorry to hear about your mother. Couldn't say it better then the Whitsworts comments. From our experience with my Father when he was unable to eat things digressed quickly and he passed within a week. No way of knowing really knowing how long this will take. Hospice was a life saver for us and provided so much information when we had no idea what to expect. Prayers to you and your family.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-78463594736740476252017-11-29T07:32:08.699-08:002017-11-29T07:32:08.699-08:00What a difficult time you and your mother are both...What a difficult time you and your mother are both having. My heart goes out to you both. Skin sensitivity and the inability to metabolize food are both signs of end of life. I couldn't possibly say how long this will take, but I'd bet on days or weeks, not months. Hospice staff will be able to give you a much better estimate. The support your mom needed from you earlier when she was fighting to stay alive is different from the support she needs from you now. That fight is over. Now, she needs you to help her be as comfortable and peaceful as possible while she goes about the business of dying. This is where hospice comes in. They are experts at pain management. They can also help you deal with this stressful time in a way that supports your mom's needs--and your own. Let me know how it goes. HelenThe Whitworths of Arizonahttps://www.blogger.com/profile/04887677292107869890noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-78573353022334947982017-11-28T20:06:44.667-08:002017-11-28T20:06:44.667-08:00I am back...as I continue to struggle with this co...I am back...as I continue to struggle with this condition that has kidnapped my mother. We are going onto day 8 with no solid food. She refuses to even take puree, liquids is all she wants. She will drink a little if chicken broth, but not enough to sustain a healthy appetite. Her blood sugar is good, 130; pressure was 110 over 68. She has complained of chest pains but the nurse said today lungs sound good. Her pain is severe, do much she refuses or become very combative when attempt to bathe and change her. Her to be gets low at times, but she understands you, cognizant and will respond if she likes your question. I guess that's the vibrancy she still has in her. Her doctors are calling for a hospice evaluation as I took your advice and asked for it. Again they (pcp & neurologist) said not much we can do at this point, which begs my forever ending question why not? How do I help her, what is her expectancy now, do we have days, weeks or months?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-74564653661651747322017-11-25T09:35:15.643-08:002017-11-25T09:35:15.643-08:00So sorry to hear about your mom. Yes, not eating i...So sorry to hear about your mom. Yes, not eating is natural as the body winds down. It doesn't need the food and has a difficult time processing it. I'd highly recommend asking for help from hospice. They can medicate your mom for pain and her sensitivity may not be so severe. At this point we aren't worrying about how the drugs will increase the dementia; we focus more on comfort. Some people feel hospice is for those only a few days away from death but that isn't so. It's goal is to help people LIVE more comfortably. Their basic rule is that a doctor must determine that the person has a life expectancy of six months. (This does not mean that the person will die in that time, but that they might.) Do contact hospice!The Whitworths of Arizonahttps://www.blogger.com/profile/04887677292107869890noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-10987039152289895782017-11-24T22:36:14.125-08:002017-11-24T22:36:14.125-08:00My Mom has had 11 strokes from October 2016 to Sep...My Mom has had 11 strokes from October 2016 to September 2017. In February 2017 her nueroolist diagnosis her with moderate dementia. She rapidly declined. She went from being the life of the party buying the bar,in Puerto Rico in Sept. 2016 to do I g & falling, stroke after stroke. Walking to wheelchair to complete bed ridden. In August neurologist #3 said she had Parkinson LBS & that she "has 2 years & I'm being generous". Yes he told me this & in front if my mother! My Mother has always been feisty, you can tell she's having a good day when joking & cursing someone out for coming to see her late. Her hallucinations would be seeing people,talking to the. Feel g them touch her. Lately she barely eats, she went from 2 .eaks a day to one, to what can be barely called a meal. It's Thanksgiving & she hasn't eaten in 2 days. Her sensivity level is so sad she is so much pain, you can just touch her and she screams in pain. It's hard change her diaper because of the pain. She knows who I am, loves my daughter & always wants her here with us, which is understanding as she cares for my Mom while I'm at work. She refuses her meds sometimes & get to such a loss at what to do. When family vidits she says she's hungry but eant to wait till rhey leave to eat, so she doesnt eat. I tried forcing food in her mouth she holds it so tight. What am I'm facing, is she nearing the end?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-47924946703568065492017-11-23T19:12:13.053-08:002017-11-23T19:12:13.053-08:00What test are you referring to and what meds is he...What test are you referring to and what meds is he on, if u dont mind my askingSimmons2https://www.blogger.com/profile/16978253670176542693noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-38181419093150050772017-11-23T19:09:10.680-08:002017-11-23T19:09:10.680-08:00How do u know it is last stageHow do u know it is last stageSimmons2https://www.blogger.com/profile/16978253670176542693noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-68339251092793946782017-11-23T19:07:49.957-08:002017-11-23T19:07:49.957-08:00How do u know it is ladt stage LBDHow do u know it is ladt stage LBDSimmons2https://www.blogger.com/profile/16978253670176542693noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-17499546546770218652017-10-14T15:32:36.584-07:002017-10-14T15:32:36.584-07:00Very Good information here
Remember folks Have Yo...Very Good information here<br /><br />Remember folks Have Your Loved ones assessed by Dr ASAP,once you notice symptoms"Don't Keep making excuses for abnormal behavior" <br /><br />My mother Would have lived longer had we (family)pushed my father into having her assessed earlier,illness/symptoms goes back several years(2001)<br />Mother was rushed hospital in Feb of this year,father was still in denial after she survived surgical procedure which almost took her life.<br />Hospital staff properly diagnosed LBD June 2017,was on clinical drug trials for months,quit working early Oct-2017...<br />We buried mom Oct 13-2017<br /><br />Chris in Kamloops,BC CanadaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-54097702569479011052017-06-18T15:30:02.191-07:002017-06-18T15:30:02.191-07:00Never too late to make peace as long as there is b...Never too late to make peace as long as there is breath and understanding....I went through a bitter divorce 25 years ago and now my ex has LBD....he has progressed to end stages...lives with my daughter...I still help her get him to dr. appts and do what I can....water under the bridge...he has regrets but I am fine....Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-16472606633675742612017-05-25T21:50:14.550-07:002017-05-25T21:50:14.550-07:00Palliative care has been a God send, in my mothers...Palliative care has been a God send, in my mothers case. She has been on hospice for about for about 8 months. The fact that her medications, basic essentials and medical needs are managed by a single entity and Dr. is extremely helpful. The social worker, chaplin, nurse and case managers, provide support and assistance, beyond what you might anticipate. I highly recommend hospice, as soon as your loved one meets the criteria. they will evaluate and assist you, if and when she transistons to a care facility or remains home.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-29947032397067532812016-07-01T11:11:38.486-07:002016-07-01T11:11:38.486-07:00Your wife is fortunate to have you. Be sure to ask...Your wife is fortunate to have you. Be sure to ask the neurologist about the additional medication for shaking that she was prescribed. It may be making her more confused and forgetful. Also, ask about low blood pressure on rising. This is common with Lewy body disorders—Parkinson’s or LBD. If she has this, it means that when your wife gets up quickly, she gets dizzy and can fall. There is medication for this that doesn’t cause more confusion, if that is what she’s got. The Whitworths of Arizonahttps://www.blogger.com/profile/04887677292107869890noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-51357991431494805252016-07-01T11:04:26.396-07:002016-07-01T11:04:26.396-07:00So sorry, Dottie, to hear about your sister. Going...So sorry, Dottie, to hear about your sister. Going through this is always difficult and I think it is difficult in different ways when the person is someone you may not have always been close to...or as your sister did, kept themselves apart until the disease could not be denied.<br /><br />It sounds like you are doing everything just fine. There are few right answers! Watch the meds and avoid those most dangerous with LBD, keep the stress down, and also your expectations. If you have fewer expectations of her, she won't feel so pressured to live up to them, is what I mean. We all want our loved ones to be what they used to be and while you know, intellectually, that it can't be, sometimes, you may find yourself expecting it anyway. That's human! As for what phase she is in, it is hard to tell but yes,from what you say, I'd guess it is advanced. However, she may still have a long time before the end. The Whitworths of Arizonahttps://www.blogger.com/profile/04887677292107869890noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-69843674857273127712016-07-01T06:49:25.741-07:002016-07-01T06:49:25.741-07:00My wife has been diagnosis with LBD within the pas...My wife has been diagnosis with LBD within the past 3 months. She has experience something was wrong for the past 4 years. Lately she has been given medicines to control her tremors. She has been taken an increase doses as per the Dr orders. She cannot stand up for more then 15 to 20 minutes before she get very shakily and start to fall. I am always around when this occurs. Went to our family Dr and fell while going to the exam room. I went for my apt the following week and as the Dr one question. She was seen by her and she was shock how fast my wife went in her health. She is having problems in remembering dates and what day it is. She stop doing crossword problems because she was not in the mood. Her shakeswhen drinking coffee and trying to eat. We have an apt with the neurologist in 4 week. I am to call them in 7 days on additional dose of the medicine. Over the past two months she has really decline and sleeping up to 15 to 18 hours a day. I love my wife dearly.Anonymoushttps://www.blogger.com/profile/15709858052892913233noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-14160695930471704512016-06-29T10:47:22.053-07:002016-06-29T10:47:22.053-07:00My sister is 62 years old. She was never married ...My sister is 62 years old. She was never married and lived alone her whole adult life. About 5-6 years ago, we noticed that she did not want to be bothered with us unless she needed something from me or my husband. We just chalked it up to her being "all about me". She never returned our phone calls. I would call back a few weeks later and ask her why she didn't return my call and said she was "too busy". Over these years she became difficult to talk to. If she said it was black, it was black, even though it was white right in front of her. This was probably about 5 years ago. Thanksgiving of 2014 she came to my house as she always did. She was very quiet which was odd for her. She later called me at 2 a.m. that she had to come over right now. She said there were people all over her house and they were trying to kill her. I had her stay by me. Needless to say we were scared. In the morning she said she knew she was imagining it because she was staring at a picture of my husband and I and saw him turn and kiss me in the picture. She went back home and showed up 4 hours later saying there was a bomb in her car. This was the beginning of a very rough year. She has diabetes for many years. I had her going to a psychiatrist and she was on meds. Over a years time she could not dial a phone, take her medicine or eat. I would find her in bed just laying there everyday. I would try to get her showered and fed. She would just stare at me...like shark eyes...empty. It became too much on me and her. She is now in assisted living so far for six months. She was doing better but I am beginning to see signs of worsening such as not bathing, not changing her clothes, putting dirty clothes in the closet, throwing out her soiled underwear. As we look back over the years of what we thought was her quirky personality, could definitely have been the beginning of LBD. My guestimation is about 5 years back. Her memory comes and goes. She recently was in the hospital for an infection in her foot. Withing 4 days she did not remember what her assisted living apartment looked like. I'm not sure what stage of LBD she is in. I'm assuming close to advanced. Any advice or guidance from you all is much appreciatedDottie Bhttps://www.blogger.com/profile/01338568521359351388noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-84884486880695053582016-06-28T19:26:56.173-07:002016-06-28T19:26:56.173-07:00My mother passed away this past January at the age...My mother passed away this past January at the age of 68 from complications related to her LBD. One of my regrets is not having chosen hospice earlier. This would have allowed her to have a better quality of life and more time for us to have with her. She suffered a lot before her death including several sacral decubitus ulcers resulting in bone infection and sepsis, pneumonia, C-diff infection, UTI resulting in sepsis. She ended up in an ICU, intubated, with central IV, debridement surgery. If I could go back in time, I would have chosen hospice.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-31350688373005620352016-06-21T00:07:46.003-07:002016-06-21T00:07:46.003-07:00Hospice is not just for the very end of life. It i...Hospice is not just for the very end of life. It is for comfort during those last months. Do contact hospice. If she qualifies the extra care she gets will be very helpful for both of you. If she rallies, she can go off hospice for a while. Many people do this, with their loved ones going off and back on, maybe several times before the end. See our blog, Hospice is for Life, not Death, 6/15/13. The Whitworths of Arizonahttps://www.blogger.com/profile/04887677292107869890noreply@blogger.comtag:blogger.com,1999:blog-1074151567956258470.post-36644710810888785982016-06-20T15:42:49.969-07:002016-06-20T15:42:49.969-07:00Today is a day for making a decision about hospice...Today is a day for making a decision about hospice. My mom recently had c-diff infection and is on her last 3 doses of Flagyl. She sleeps between meals and has her eyes closed when she is not sleeping. She eats very little and refuses when the CNAs at the assisted living memory care facility try to feed her. She gets mad or throws her food. It is a struggle to get her to drink Ensure. She really can't communicate with us, but for the most part knows us most days we visit. She can't find her words, but sometimes can express a few things.<br /><br />She is eating very little and we wonder if it is time for hospice. <br /><br />She probably had symptoms a few years before we really noticed as she lived alone and hid them pretty well. The first big sign was when my sister would visit and stay with her she couldn't complete a task. Christmas 2013 she couldn't figure out how to put a gift card in tissue paper, put it in a bag and label it without me going back each time and explaining it. I had done her Christmas shopping for her and given her that task while my sisters and I wrapped other presents. <br /><br />I took her to a neurologist in March 2013 and Dr called it mild cognitive impairment. I wrote notes to him to read before we met, as she wouldn't admit she had an issue and didn't want to go to the dr again. He wouldn't read them before we came in so I couldn't ask the questions I wanted to in front of her. <br /><br />I talked to someone at the Alzheimer's Association that happened to go to my church. He asked if I heard of LBD. She had the chronic runny nose, shuffle, hunching, going to the bathroom often, some incontinence, and of course the memory issues. I didn't recognize that she was having hallucinations, as I think she hid them. She had said some things so not too long after reading about LBD did I realize she was having them (cats, little girls, people in her bed or room, in the same room as us, etc.).<br /><br />At the first visit with the new neurologist, I mentioned LBD and he didn't initially agree since he had not examined her before. 3 months later her standard test they do was so much worse than her first visit so he did agree with the LBD diagnosis. I cared for her for 16 months and on March 31 of this year we took her to the assisted living memory care facility where she seemed a little better using a walker for first time as we never let her walk alone whenever we could help it and she couldn't quite manage how to use the walker when we tried one at my home. She hasn't been at the facility for 3 months yet. She is now very weak so is using the wheelchair more and more and while she does occasionally use the walker, she says her legs don't work right. She needs assistance with everything (picking out clothes and dressing her, going to the bathroom, making sure she takes out her dentures, eating or she will just stare at food, and making sure she takes her pills).<br /><br />Now that she is refusing to eat much of anything, fighting the pills, and has dropped from 102 to 91 in 3 months, I am wondering if now is the time to bring hospice in. It seems obvious, but as I read through everyone else's posts, you just never know with LBD.<br /><br />KarenAnonymousnoreply@blogger.com