Guest guest Report post Posted February 15, 2003 I haven't heard from you in such a long time. How is your FIL doing? How have you been doing? It is wonderful seeing your name in here. Hugs to ya! Sandie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 18, 2003 In a message dated 2/18/2003 9:11:16 AM Pacific Standard Time, diegs42@... writes: > This is just a guess, but I think the testing is actually done by a > neuropsychologist and not a neuropsychiatrist So -- what about a neurologist then. Are they acceptable clinicians or not. Is the neuropsychologist better at this? Joni Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 19, 2003 Joni, I'm sorry, I think I may be misunderstanding your question. I'll explain my situation, and hopefully that will clarify. Our neurologist that specializes in dementia is the primary (or umbrella) physician. She has the most comprehensive knowledge on the exact processes that are occurring in the brain. She also coordinates his total care, and has referred my dad to the neuropsychologist (for cognitive testing, not organic testing) and the geriatric psychiatrist (for his mental well-being and psychiatric medications). In other words, when he has testing done by the neuropsychologist, she gets the results as well. And when he meets with the geriatric psychiatrist, she gets a report as well. The neurologist is not a substitute for the neuropsychologist, and the neuropsychologist is not a substitute for the neurologist. They are both essential to his care and work hand-in-hand. I hope that helps, and if you have any other questions, please ask. ------ in Madison, WI (USA) > In a message dated 2/18/2003 9:11:16 AM Pacific Standard Time, > diegs42@h... writes: > > > This is just a guess, but I think the testing is actually done by a > > neuropsychologist and not a neuropsychiatrist > > So -- what about a neurologist then. Are they acceptable clinicians or > not. Is the neuropsychologist better at this? > Joni > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 20, 2003 ahh ha .... OK I've got it now .... thanks. Joni Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 2, 2003 You have strongly been in my thoughts and prayers. If time permits, please let us know how you are doing! Sending you many hugs! Sandie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 4, 2003 Strange that you mentioned your mom never asks about her things...my dad didn't either. He went from his apartment, to an adult psychiatric hospital, to a nursing home. It just never came up, from him. I was always honest and told him I would take care of his apartment and things, yet as you mentioned it just didn't seem important. My dad also had had a peg tube and he totally hated it. He would detach the tube from his belly, look whoever was in the room in the eyes, and spin the tube so the liquid nutrition would go all over the room. Then he would throw the tube down. I ended up having a 5 minute decision to make by myself for the feeding tube which gave my dad another 2 1/2 yrs of life, and when asked again if I wanted a tube in...I said no. My dads was in from Jan 2000 to April 2000. He ended up gaining all the weight back, regained strength, was able to walk again, somewhat talk, and appeared healthier than he had in quite a while. After the quick progression in June 2002, I saw no reason to tube feeding again. Best of luck to you! Sandie Des Moines, IA Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 8, 2003 Thank you for the offer...may take you up on that someday. Also, sooooo glad it is too snowy for a moped ride. Guess that should hold your dad for a few days anyway. Not sure what will happen for him when the snow melts and it starts getting warmer... Keeping you in my thoughts and prayers....also, my offer stands for your mom's upcoming surgery, if you need help, or just even want to take your dad out for pie and coffee (tea, pop), call me and I will meet with you and he. Hugs- Sandie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 13, 2003 I want to personally thank you for the update. The fluctuations of LBD can be so uneasy. I truly believe time and our lifeline destination is out of our hands. When it is our time to go, we will leave this earth for a resting place beyond. But until then, you are so right...where there is life, there is hope. My blessings to this new ward for recognizing that your grandpa is still alive and giving it their all 'til the end'. My continued prayers for your strength and endurance to see this through, and for your grandpa to have comfortable, peaceful days. Sending many warm hugs from Iowa! Sandie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 21, 2003 Still hugging you with my heart, and keeping you, your family, and especially Grandpa Bert in my close prayers. Blessings and hugs being sent your way- Sandie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 31, 2003 Hello , you mention your e-mail mailbox getting so full from the LBD group messages. May I suggest to you what I do. I have set it up so no messages come to me direct into my mailbox. I read all correspondence on line. That does free my mailbox up. > Sorry folks that it has been sometime since i contributed anything but i > have been very busy we were on holiday in the U.S. (myself and my wife) in > feb and have been quite busy ever since we came back I have not seen my > father since the new year but i am going to visit at the weekend. I talk to > my mother every couple of days and it seems that my father is really > progressing rapidly with this at the moment he is now unable to dress > himself or wash properly and now my mother has to help him. At least he > allows her to help him now which is a change from his beligerence and anger > towards her. She is glad in a way that she can help with these things and > that he now allows her and asks for help, but there is also great sadness in > having to do these things for him. > I find it hard to keep up with the volume of correspondence going through my > mail box from the LBD group but just a few comments on things that i have > read recently my father also has great difficulty with the phone despite > having got a phone with big one touch dial buttons he can't seem to ring who > he wants or when he does he forgets what he wants to say or even who he is > talking to, he is also very lost even in his own house. > I suppose this condition has been working on him for some time and it is > interesting to read about coincidence of surgery / trauma and onset of LBD. > My mother always says that he has never been the same since an accident at > work 10 yrs ago in which he broke a couple of bones in his back. He > subseqeuntly often complained of neck pain. While he recovered physically > quite well he carried a lot of resentment about the accident and subsequent > compensation battle and his inability to return to the same type of work > which had been his life. > He has been taking Zyprexa (olanzapine) for a number of months and that > seems to have helped with hallucintions although while on 5mg daily he was > very dopey and slept a lot so we have cut him back to 2.5mg. He was recently > prescribed Reminyl (i think the generic name is galantamine) but this seems > to be causing stomach upset and depression so i think we will discontinue > this. > Another aspect of his disease is his frequent complaints about his bladder > and bowels he has had all the tests and nothing has been found but he > says he has to go all the time it is hard to know whether he does go or > whether he just thinks he does. > I am also interested in any complementary approaches to treatment. Whilst we > were in America we met some people who work in the nutritional field and > made enquiries about any possible approach we could try. They felt that my > father had progressed too far for any dietary intervention to do much good > but that for someone in the early stages cutting out all processed food and > additives cutting down on grain and supplementing with enzymes and > probiotics and using a herbal de-tox would all be useful. A lot of this info > (and more) is contained in Electrical Nutrition by D.Hiestand. > Anyway a lot to digest here so i'll leave it for now i'll try and write a > little bit, more often instead of in big chunks like this. > Bye for now God Bless. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 2, 2003 My heart truly goes out to you. I am happy to help if you need me to. Even a phone call, or to meet (with your dad) could give you a break. Know that I am here for you and it would be my blessing to help you through this time with your mom's recovery, and your dad's struggles. Hugging you in Iowa, with all my heart. Sandie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 3, 2003 You and your family are close in my thoughts and prayers. Hugging you with my heart- Sandie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 6, 2003 You are welcome. Thank you and your family for allowing me to be part of your days at the hospital. My prayers are with you, your family, and for your dad's comfort and peace. Hugging you with my heart. Sandie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 8, 2003 , I can only say that in my mom's case her mind is still very active. She gets mixed up on medications,and little things sometimes but not always. She gets some things that people say out of context and doesn't seem to realize just how bad off she is. However she can hold a conversation, she does remember things both past and present and she knows when she is in pain. If you talked to her on the phone you wouldn't know she even had a problem. From what I hear in this group half of our loved ones are in their right mind and half don't talk or express themselves well. I guess it would be an individual thing. You know your Dad better than anyone. Does your Dad communicate? Can you tell us a little more about him, age, symptoms,is he living at home etc. I would like to say I am glad you came to this group, I am sorry you have to be here but haveing a LO (loved one) with LBD, I feel this is the best place for you to be. Good luck, write anytime and remember there are a lot of similarities but each patient is an individual. Take care, Shirley >Shirley, >Less than two weeks ago my Dad was diagnosed with LBD. The >neurologist told us that he had no insight into his present >intellectual impairment. This brought confort to me as sometimes I >got the feeling that my Dad knew something was wrong but could not >express it. I just read your LBD patient's point of view and am now >wondering whether my Dad does or does not understand what is >happening to him. Can you please provide me with your opinion. >Thanks. _________________________________________________________________ MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. http://join.msn.com/?page=features/virus Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 8, 2003 I want to welcome you to the group. Thank you for sharing a bit of your story. May I ask how old is your dad? How long has he had symptoms of LBD, and is he still living at home? I must echo what Shirley said. This disease is so individual. My dad wasn't able to carry on a conversation for oh, 2 yrs before he passed away, yet at times he would stand in his room at the NH, clenching onto the vanity and looking into a mirror yelling, " Why me, why me? " Also, in February 2002 I had the Ativan stopped (didn't know up til then the effects it could have on my dad) and we started Exelon. Within a couple months my dad was talking more in sentence form and was talking of what he and I did the summer prior. He said, " Remember when you took me outside to feed the birds? " He wanted to see my truck as he had remembered it. So, I know there is dementia, I know there are hallucinations and delusions but I also know the experiences my dad had. I have to tell you, when my dad started talking again and talking about memories I was floored, baffled, and thrilled. I cherish those memories. Please keep posting and let us know how you are doing, and how your dad is doing. Through your experiences others will also benefit. My prayers will be with you. Sandie Des Moines, IA Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 9, 2003 Thank you for answering my questions. And might I add, there are several members here from Canada. You truly are not alone, both geographically and through these emails. My dad was 65 when he passed...just seems so very young. Is your dad still taking the Resperidone? Has any other meds. been added? It is tough to say 'what stage' he is in. One thing you will find is LBD fluctuates so much. We can assume our LO is in the end stages, ready to pass, then they prevail. Just as you mentioned with your dad at the doctor visit. It appeared nothing was wrong, when in reality, everything was wrong. Please keep posting. You will find many answers here, much support, and all the love in the world. Hugs- Sandie Des Moines, IA Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 9, 2003 Yes, I will keep you updated. My prayers are with you and your family. Cherish these days with your dad. Hug, and more hugs to you! Sandie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 11, 2003 Hopefully I can help with getting your sister directed to the group. Try having her type in 'lbd caregivers yahoo' in a search engine. Or even just Lewy Body Disease caregivers. Also, http://www.lewybodydisease.org will bring up the LBD website. Then there are links to click onto...I believe one is caregivers, or email groups. After clicking onto that, it should bring up the 2 groups available - LBD Caregivers and LBD Caringspouses. Please let me know if this helps. Blessings to you! Sandie - today we are expecting a high of 70 (farenheit, for our International family) and sun, sun, and more sun....great attitude adjuster! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 11, 2003 Sandi, Tell that I am thinking of her and sending strength to get through this time. Debbie C Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 14, 2003 Yes, I am looking forward to " 40 " or atleast it isn't really bothering me. I guess as long as I am viewing life from above ground, I am ok with it. My brother turned 42 April 7, and it hit me today that our first uncle died when he was 42. That made my heart skip a beat, but, again, as long as my brother and I are here on earth together...BRING IT ON! You are welcome with the help in getting Beth to the site. Bravo! Glad she made it, and you should pat yourself on the back for being the messenger and directing her to the group. I look forward to a post from her. Too bad your dad doesn't see the same doctor. I agree, it does make a difference. I would suggest printing off information from the internet and taking it to the doctor's office, VA, office, or where ever it is he is being seen. Our own website http://www.lewybodydisease.org is very helpful and informative and would be a great place to start. Also, when typing in Lewy Body Disease in a search engine brings up more websites, some of which have printable versions...never hurts to educate. I always carried along literature for the many people I came in contact with concerning my dad. The VA could put this in your dads file/charts so the next doctor that see's him would/should have something to go on. Let me know if I can help in getting you to a good website. Take Care, keep us posted, and I look forward to seeing more posts from you. -----brace yourself....40 is knocking....LOL Hugs- Sandie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 17, 2003 My prayers are with you and your family. I will be visiting your dad today or tomorrow. Will have to look up the Hospice/Kavanaugh house in ston as I am not sure where it is. I have a baby shower to go to today, with Aramark (momma is having her 3 girl, and boy did I go crazy shopping...having 3 boys of my own...there are SO MANY adorable little girl things out there...somebody STOP ME) so I will be in the neighborhood. Please let me know if I can help, or even to set with your mom to give her a break. Hugs to you and your mom!! Sandie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2003 Are you sure you don't mean the 21st of March? Your post read 21st of May. I remember you letting us know of your mom's passing and I have kept you in my prayers. You are now where I have been. The days move forward yet seem so empty. For so long there was so much time, energy, and caregiving involved...now life is so quiet. There is peace and pain in the same breath. You will survive this, as the rest of us have, but it will take time. Take the time you need to remember, reflect...and eventually, move forward. My thoughts and prayers are with you today. Sandie Des Moines, IA Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2003 My heart goes out to you as you grieve over your mom, which you are still able look in her eyes. This is such an overwhelming, confusing disease. LBD turned my dad into someone I didn't know. He was always fun loving, full of laughter and loved to eat. He (well, and I) never turned down chocolate. His final stages were different to what you are explaining about your mom's final stages. My dad was unable to talk in a sentence, the last year or two of his life. He went through choking periods where he would gag and choke on everything, even liquid. From the middle of June to the middle of August, he lost over 30 lbs. From then on he kept losing. Some days he would eat, some, and other days he wouldn't eat anything. He had became completely incontinent. September 4, he was admitted to an adult psychiatric hospital (via my truck as the NH never ordered an ambulance, arrgghh). From that day on were the true - final days - of my dads life. It was as if he just stopped eating, stopped standing and stopped walking. The hospital tried everything, all options of food, mainly chocolate, to get him to eat something. He was so very thin, his hands took on a closed up look as if he was clenching finger tips to thumb tip and couldn't be opened. His eyes had black rings around them and were somewhat sunken in...yet still big and blue. His elbows were usually bent and his hands rested in the air turned inward at the wrist. He had a raspy sound to his lungs although they were clear. The inside of his mouth started to crust over and it took every ounce of energy I had to make him laugh...or even smile. I guess my point is, the timing is way out of our hands. Everything is made beautiful in its own time. As long as there is life, there is hope. Cherish these times, even if they are heartbreaking and hurtful. The disease is causing your mom agitation and rudeness. Your mom's heart is still the same. Even though I thought I was prepared, I was ready to let my dad go, when I heard the news my dad had passed away I felt like I was in a horrible nightmare and I couldn't breath. I was at a doctors appointment and I instantly forgot how to get home. I used my cell phone to call my brother and couldn't get a hold of him, or anyone else. I was so very lost. I hope all of this wasn't too grim or dark for anyone still travelling the LBD journey. I just can't stress enough how valuable each and every breath, each moment of life is. My mind knows my parents are together now but my heart is missing them tonight. Thanks for letting me explain some of my story. Blessings to all and sending hugs, too! Sandie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 22, 2003 Please know you are not worthless. Your heart is so big, so full of love, that you are searching for any possible way to help your mom. You may feel helpless, but you are not worthless. May I ask...have you tried any of the anti-depressants? I took/and still take Zoloft. Watching my dad change into someone unfamiliar to me was more than I could handle. In the beginning, I was the one he would target his words to, not my brother...yet I was the one over at his apartment 2 or 3 times a day. I was the caregiver and I was the child hearing the negativity. LBD was causing my dad to say things he wouldn't normally say to me. I have survived this, and you will too. I will say an extra prayer for knowledge and strength tonight with your name on it. You are not alone. You may email me personally if it will help you. Ask any questions, open your heart, and let me/us carry you through the tough times. Holding you close in my heart. Sandie Des Moines, IA Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 29, 2003 It is nice seeing your name in here. It has been a while...you have been missed. Great job jumping right in and welcoming the newer of the new members. :-)) Take Care! Sandie Des Moines, IA Quote Share this post Link to post Share on other sites