Guest guest Posted January 23, 2003 Report Share Posted January 23, 2003 Atleast now you know you will not have to go through the journey of your dads, alone. Anything I can do, whether you feel it is minimal or too much to ask, would be a blessing for me to help with. You are in my prayers. Sandie yes, school was still going, with no delays...just like the Des Moines School District... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2003 Report Share Posted January 25, 2003 Joy My dad had been diagnosed with Diffuse Lewy Body...another name used for Lewy Body Dementia. At first, dad's neurologist thought either Parkinson's Plus or Diffuse Lewy Body. After many, many tests from blood work and CAT Scans to clinical testing all else was ruled out to end with the diagnosis of Diffuse Lewy Body. I accredit dad's neurologist to being young having knowledge of the current names of dementias. Also, his neurologist has a very caring demeanor which was a definate plus! Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2003 Report Share Posted January 26, 2003 Hi -- a question for everyone. BTW I'm new today to the idea my dad may have LBD instead of the ALZ he was diagnosed with. What happens if I push this fact and the doctor decides maybe it's true, changes my dads meds and so on. Does Medicare / Medicaid continue to pay or must we begin all over again. He is currently in an ALZ nh. Am I better off leaving it alone (still try to change the meds?) jr In a message dated 1/26/2003 6:01:42 PM Pacific Standard Time, sanclown@... writes: > Subj: Re: (unknown) > Date: 1/26/2003 6:01:42 PM Pacific Standard Time > From: <A HREF= " mailto:sanclown@... " >sanclown@...</A> > Reply-to: <A HREF= " mailto:LBDcaregivers " >LBDcaregivers </A> > To: <A HREF= " mailto:LBDcaregivers " >LBDcaregivers </A> > Sent from the Internet > > > > > Great idea of contacting the media, however, it has already been done. > I think July or Aug. of last year several of us had quite the list of > media contacts, to no avail. It is never too late though. Maybe it is > time to bombard the media again. I'm all for it. Also, I agree about > out local stations. I have checked the website for channel 8 several > times in hopes of getting a spot with Mollie Cooney and " Health News You > Can Use " . Just haven't found any real contacts yet. So, my mission > this week, again, will be to get some results in hopes of helping the > LBD cause. > > As for questions for your dad, and his neurologist...your dad appeared > to have a great day when I met him. His memory was awesome, his balance > was fine, and his speach wasn't mumbled. I do know that there are " off " > days as well, but that Sunday was incredible. So for now, I will just > set back and wait for a report. Please let me know what the neuro has > to say. One thing I did want to let your dad know is that the medical > field, family, and all around him will still offer food, but if he > decides not to eat...that is his decision. I wanted to be clear with > that. It is the job of staff members, whether in a hospital or NH, to > offer food, but your dad does have the right to let it set there. Do be > aware though, there are plenty of nutrition drinks that may be > introduced. This happened to my dad with NO phone call to me ahead of > time. When I walked in on dad drinking the nutrition drink, asked for > the MRS report (monthly report of all cares, meds.) and confirmed that > dad had been given these drinks for a few days, I had it stopped. My > dad knew if he wanted to eat or not, so sneaking in nutrition seemed to > go against his wishes. I told him what the drink was, and he pushed it > off the table. > > Thank you for including me...I am truly honored. I will call you this > week. > My prayers continue to be with you and your family. > Sandie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2003 Report Share Posted January 26, 2003 Great idea of contacting the media, however, it has already been done. I think July or Aug. of last year several of us had quite the list of media contacts, to no avail. It is never too late though. Maybe it is time to bombard the media again. I'm all for it. Also, I agree about out local stations. I have checked the website for channel 8 several times in hopes of getting a spot with Mollie Cooney and " Health News You Can Use " . Just haven't found any real contacts yet. So, my mission this week, again, will be to get some results in hopes of helping the LBD cause. As for questions for your dad, and his neurologist...your dad appeared to have a great day when I met him. His memory was awesome, his balance was fine, and his speach wasn't mumbled. I do know that there are " off " days as well, but that Sunday was incredible. So for now, I will just set back and wait for a report. Please let me know what the neuro has to say. One thing I did want to let your dad know is that the medical field, family, and all around him will still offer food, but if he decides not to eat...that is his decision. I wanted to be clear with that. It is the job of staff members, whether in a hospital or NH, to offer food, but your dad does have the right to let it set there. Do be aware though, there are plenty of nutrition drinks that may be introduced. This happened to my dad with NO phone call to me ahead of time. When I walked in on dad drinking the nutrition drink, asked for the MRS report (monthly report of all cares, meds.) and confirmed that dad had been given these drinks for a few days, I had it stopped. My dad knew if he wanted to eat or not, so sneaking in nutrition seemed to go against his wishes. I told him what the drink was, and he pushed it off the table. Thank you for including me...I am truly honored. I will call you this week. My prayers continue to be with you and your family. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2003 Report Share Posted January 29, 2003 Shirley Would LOVE to meet you in Las Vegas. Will write your name down for that. Just starting with the idea of a gathering and am open to any and all suggestions. Looking forward to meeting you in person and hugging you in person instead of cyber hugs and/or over the phone. Take Care- Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 Shirley So glad you have found a few hidden blessings in the midst of the storm. Praise the male nurse for his caring and compassionate ways. Hugs- Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2003 Report Share Posted February 15, 2003 Joy My prayers go out to you and your family at this time of passing. The picture you painted does sound so very peaceful. It truly sounds like your mom made a very fantastic last statement before exiting life on earth. My condolences to you and Earl, and may life treat you kind, show you love, and help in healing your heart. Sending many prayers in your name to our Father to hold you in His arms. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 , you have a right to vent and arn't we glad we can do it here? I don't know how big the area you live in is, my sister lives in a small town and I have been able to keep her from getting someone to move her back to her house simply by talking to any and everyone I can find to tell, and the place where her apartment is have people on the look out. She did have someone there twice in trucks to move her but thank God they went to the office first and was told she was not moving back to her house. You would not believe the people she called, one person she had not seen in probably 30 or more years, now how did she remember him???? Only God knows!! Can't remember what she had for lunch but can remember an x brother-in-law from 30 years ago!!!! Oh well, its the disease!!! You take care and vent vent vent Jayn from S. GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 A note of concern about your father being well enough to get into trouble but not well enough to keep himself out of trouble. A friend of mine father in-law had a building torn down in their little town that they did not own! Talk about a mess to untangle! Luckily it needed to be torn down but it was a surprise to the owner the the person doing the work! The father in-law was not LBD diagnoised but did have parkinsons. Keep a eye out! Good luck Colleen in Missouri (unknown) This disease is so frusterating. Just when things are going ok, things change. My dad got mad at my mom and told her he would stay with her until after the surgery was done,then he might just leave. Don't know where it go. I guess he was on the phone calling people, and so he called my brother and has it in his head that he wants to build a modular home, my brother asked him if mom knew he was on the phone, and that made him mad. He is also always wanting to drive, told my mom and brother that he was going to get an old truck and drive. WE need to find a hobby for him, because when he is doing better, he gets bored and starts thinking up things to do. I know he called my brother because he knew what I would say, now my guess is he's mad at my brother. My mom takes it in stride, and tries to treat him normal, because he just wants to be treated with respect. He really doesn't understand why he can't drive. I'm afraid he is going to sign some legal papers some time and she won't know it, until someone shows up to start building a new house, however, she does hold Power of Attorney for him. He can no longer make legal or medical decisions for himself. I've had sick kids, so I've had to stay away, but need to take him out. He's mad because my mom can't take him to Minnesota to see my brother. She has been sick, and does not feel up to it. I have a dinner to go to this week-end, otherwise I would take them. My dad has swelling problems in his ankles also. He also has diabetes, and is going to see a foot doctor today because of sores on his feet. I hate this rollercoaster ride!! It sure isn't fair is it? Thanks for letting me vent. C. Adel, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Jayn Sounds like you are really on top of this LBD thing. Quick thinking to tell everyone everywhere of your sister wanting to move. The manipulation part of the disease can be so very believable at times. Sometimes it would take me days to fix things my dad had 'broken' so to speak. Phone calls he made, appliances broken, lost keys...the list is endless. Stay strong and keep the faith. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 We too had the problem of how to get dad to stop driving, he kept saying there was nothing wrong with his driving, until one day, he took his old pick up truck out and turned up back at the house without it. He couldn't remember where he'd been or where he'd left the pick up. He never mentioned the incident but stopped driving shortly after this, but it was a sad day for us all Siobhan P.S We found the pick up after four days and much driving around!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Martha Just a quick hello. My father has not been diagnosed with LBD but from this wonderful group of people here and a certain amount of research, we are fairly sure that is what he has. We would have noticed certain things as long back as nearly 10 years ago. Your post struck a cord because dad is only 58. Do you know what was first noticed about your brother? Perhaps you'll know more after your trip. Drive carefully!!!! Siobhan Ireland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Early hallucination & problems with balance and gait are usually among the first symptoms seen in LBD. In contrast, short-term memory impairment and disorientation are usually among the first symptoms seen in AD. Re: (unknown) Martha Just a quick hello. My father has not been diagnosed with LBD but from this wonderful group of people here and a certain amount of research, we are fairly sure that is what he has. We would have noticed certain things as long back as nearly 10 years ago. Your post struck a cord because dad is only 58. Do you know what was first noticed about your brother? Perhaps you'll know more after your trip. Drive carefully!!!! Siobhan Ireland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Russ I have found it rare, yet it does happen, that with LBD both symptoms of PD and AD present at the same time. This was the case for my dad. He had the falling, hallucinations, gait, freezing in doorways, short term memory problems, delusions and disorientation all in the very beginning. As the disease progressed, the falling stopped (or we learned more how to help him walk and turn), the hallucinations stayed but seemed to change, still walked with a gait, was stiff and rigid, memory loss fluctuated, stooped forward posture, and a whole list of other symptoms. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 In a message dated 3/20/2003 6:19:46 PM Pacific Standard Time, littlebutterfly@... writes: > Gail in Colorado here, where we have just finished the Blizzard of > 2003. total for the city of Denver, 31.5 inches. Needless to say the > city was totally paralyzed yesterday and not moving very well today. ============================================ Hi Gail -- anymore snow expected? I love snow but not at that depth. Joni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 Gail Nice to see a post from you, especially with the recent snow storm. Stay warm, and be careful. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 Gail, What a cool slide show! Hope some of it warms up and melts! Donna, In MI where we don't have snow right now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 Gail Thank you for the slide show. I have cousins that live in Loveland...haven't talked to them lately, and wonder if they too are snow bound. Take Care and stay warm- Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2003 Report Share Posted March 23, 2003 Gail Thats great compliments about UPS. Thank you. I really like working there, so far just part time but with all medical, vision, and dental benefits. Sounds like you are right on track with your step mom in helping but not being pushy. Please do keep us posted! My prayers are with you. Sandie - where it stopped snowing here a couple weeks ago, and off and on we have had 60-65 degrees (Farenheit, for our International family). Loving the warmer weather, when we have it...so far has been sporatic... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 Dear Remember, I have been where you are. I don't want you to feel overwhelmed, so if there is anything I can do, please let me know. We can get together and talk, hug, and/or cry if you need to. Also know, the offer stands if you need help with your dad. Sure sounds like you have had quite the share of struggles. One of the many horrible issues with LBD is the fluctuations. They can creep up when we least expect them. Sometimes it is hard to know if a change is a fluctuation or progression. You may call me anytime for anything. My prayers are with you and your family. May you find strength to help your mom and dad through this change in life. Blessings to you! Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 One more thing, in the very beginning, my dad had indicated to the nurse checking in on him in his apartment that he would harm himself. She is required to report that, so she called me first and we decided to admit him to the Mercy lin Center. He never purposely did harm himself, but there were times through out the disease that he would hit windows, counter tops, and even lashed out at a couple staff members at the NH. I wanted you to know, your story sparked that memory for me, and I feel that I know the many emotions you are feeling after hearing what your dad said. My prayers are with you! Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 I've noticed that it's often the case that spouses will " cover-up " symptoms of their LO to the largest extent possible, and purposefully attempt to hide the severity of problems from the rest of the family. Sometimes, it is the affected spouse that requests that the children " not be bothered, " or one-or-the-other spouse is too embarrassed to mention/admit there is a problem. I think that sometimes this " hiding " approach is unwise. Many times, once adult children realize the extent that their parents are ill, they'll experience huge feelings of guilt that they didn't do something to help earlier. In one instance, the adult child was extremely angry at his affected father's second wife. He felt that she had somehow slighted him by not informing him of his father's real condition earlier. I understand the motivations of parents to " hide " symptoms from children. It is a natural, protective, parental instinct. Just thinking out loud... -Russ (unknown) Welcome to all the new members. This is a really hard diease. My mom's surgery went very well. She was up and walking yesterday, but had a set back last night. She is having trouble keeping things down, and she was running a ferver. Had an episode with my dad at the hospital yesterday. He wanted to look in the gift shop, and he was trying to get something off the wall with his cane. I told him that he couldn't do that, well that made him mad. I told him he could look at things, but need to ask me or someone for help. He then tried to pick up someting and again I reminded him he needed to ask. He was then mad, and announced to everyone in the elevator that he was cutting me out of his will. I said I didn't care, that was ok with me. When we got to my moms room he pouted, and I told her what had happened. He then wanted to go to his home, and I told him that was possible, but mom would be coming home to my house soon. I left so he could talk about me to mom, and when I came back, he was blow drying the light socket. He was really out of it. I think my mom has been covering for him more then we realized it. She thinks he will be ok when he gets back home, but he needs care all of the time. He is really bad about dropping things, and we is always spilling, so we found a coffee cup with a lid that helps the slipage. He got chocolate all over my car seat belt, so my husband had to clean that. I didn't realize how bad he had gotten. I'm tired and I've only been doing this for a few days. He gets mad and totally shuts down. I felt bad because last night I had to get up at 11:30 and put him to bed, and he apolized for having to take care of him. C. Adel, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 , Thank you for your kind words. I know I was having a bad day. I was not able to sleep much last night. But I am feeling a little better today. Although unfortunately my husband had to leave today for a business trip. So it will be a hard week usually he and my 22 year old daughter help with my 10 year old. She is great but she misses Mommy and always wants me at home. Luckily I pass the hospital on my way home so I stop for about 1/2 hour. Usually she doesn't even remember I was there 10 minutes after leaving. It's kind of fu nny when she gets aggitated and angry she gets more clear headed. But that is when she gets dangerous. I am so sorry about your dad. How long has he been diagnosed with LBD? Is he having internal bleeding? You are very lucky to have someone that understands close to you. My daughter and I are looking for a group for me to go. She is very worried that I will collapes. But I will be OK. Good Luck, In a message dated 4/6/2003 7:00:16 AM Central Standard Time, crawf5@... writes: > I'm so sorry for what you are going through. There are bad > days and there are good days. Right now you are having one of those > really bad times. I know exactly how you feel that you wish they > could just go to sleep and never wake up. We are dealing with that > right now. It's very important that your family discuss these things > because you just never know when it will happen. I've found that the > doctor's and nurses don't even know about LBD let alone know how to > treat them. I've always had to explain it to everyone > > It's nice having Sandie close to me because she is there for us and > it helps especially at this time. She has been there. Try and find > someone or a support group through the Alzihemers Assoc. My brothers > have been very supportive and I'm sorry it is just easier for your > brother to ignore it like it will go away if he does. I would > suggest this group to him. It is probably in denial and it is hard > to accept, but you have to so you can move on. > > Thank you Sandie for keeping the group updated for us. I had a few > moments before I'm getting in the shower to start my vigil at the > hospital again. Last night when we left, he was resting comfortably > and his blood pressure was low. I just don't want him to be in pain > and go peacefully. He has already suffered so much, and he has great > faith in God. > > Keep you chins up everyone!!!! > > C. > Adel, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2003 Report Share Posted April 12, 2003 Thank you Gail and please, you are not having a pity party and if you are you deserve it. We have all expressed frustration here so express away. I'm so sorry that your father's wife is making things so difficult for you. I hope she comes to realize this soon and that you and your father can have a more immediate relationship. Courage (unknown) 1. Did you have a good relationship with your LO who has/had LBD when you were living under their roof? My father travelled - I never knew when he was home or travelling. He always made me feel that I wasn't good enough, etc 2. Did this relationship change once you were out on your own? Not really until my mother became ill and was dying, I travelled to Florida and cared for her during the last 3 weeks of her life, and heard from and saw him several times in the next couple of years until he remarried - it was made clear that me and mine really didn't have a place in his or their lives, although I contuined to call him several times a month. 3. Did this relationship change once you were aware of the dx of LBD? His wife did not contact me for almost a month after the hospital stay and him being put in a nursing home and it took me another month to convice her that I was coming to see him (which I did) I call him every week now - instead of twice a month 4. What is your birth order? Only surviving child of 9 pregnacies 5. Were you the " responsible " child or the " rebel " or how would you describe yourself? Mom raised me to be independent and resilent - guess that made me the rebel 6. Did you choose to be the primary caregiver (or secondary etc. caregiver) or was this a question of circumstance? Please state if you are primary or secondary. Circumstances 7. If circumstance, please describe (was it geographical, monetary, availability to take on these duties). I am in Colorado and he is in Florida, and I am not really wanted down there 8. Are you male or female? female 9. Do/did you receive enough help from your relatives (siblings, Aunts/Uncles, etc.) I have received moral support from my cousin (my father's nephew - this is a good thing from the beast - because we didn't know each other) my sons are supportive (but my father isn't even a signature on a birthday card to them) and am blessed with a wonderful DIL who is right there every time I need her - even if I didn't know I needed her. His wife - well she blames my mother for this (she passed 20 years ago) 10. If you knew then what you know now, would you have changed your role in caregiving? No, I would not and will not make it more difficult for him - Fist of all thank you for the birthday wishes - my youngest son (29 this year) says that the only birthdays that count are the ones that are speed limits - next year it counts - double nickels. Secondly, sorry this sounds so whinny and self pitying, and long - but it is where I am at the moment. I would like to be there, but I realize that I would probably do more damage than good, he is in a safe place, with (I hope)adequate care, a neurologist that sounds like he is fairly well educated, told my father's wife, that he, the doctor, has told his own wife, that should he get LBD that she is to make sure that no extrodinary means are taken to prolong his life. end of pity party - thanks every one Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2003 Report Share Posted April 13, 2003 Just wanted you to know you are in my thoughts and prayers. Love and hugs- Sandie Quote Link to comment Share on other sites More sharing options...
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