Guest guest Posted February 1, 2002 Report Share Posted February 1, 2002 You're welcome, Sandie. It really is a struggle dealing with this dreadful disease. Another thought came to mind. It is that even when the meds are working it seems the disease sometimes overpowers them. My husband's protocol hasn't changed for nearly a year, and while he is great some days, on others he isn't so good. The massage therapy helps his posture but sometimes he is more hunched than ever when he leaves the session. The massage therapist gets a bit frustrated as she works so hard, and sometimes he responds so well, sometimes not at all. I see this as part of the fluctuations that come with the disease. I am hoping that a change in meds regimen will help your dad. We don't have the anger and rages and uncooperativeness to deal with at this point, but you never know, and I'll be interested to know what helped your dad if our time comes. Hang in there, Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2002 Report Share Posted February 1, 2002 Cheryl I truly appreciate your responses. My dad, has really been changing for some time, and still has the fluctuations too. I have let the change go just to see if it is a fluctuation or a real change and determined the latter. I think it is time to switch meds., and pray that this helps him. Glad to see you don't deal with the anger and uncooperativeness.....makes each visit even more of a struggle and the memories can be overwhelming. As yet, all I have approved is to have the dr. wean dad off the Lorazepam, and when fully off, we will go from there. Hey, take care and thanks for the caring concerns. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2002 Report Share Posted February 1, 2002 Hi Sandie - I, too, find my Mom's hostility and agression very disturbing. I wish I could tell you that even one med helped, but no such luck. She reacts to even simple instructions with such anger, that simple communications are now nearly impossible. Her hallucinations have been present and unyielding since day one. ly, these are now a minor concern for me, as the sleeplessness and combativeness are such serious issues. I must tell that her doctor is even surprised that none of the meds has made a dent in these areas. So much so that he wants to see her again next week for an evaluation. I am so lucky to have such wonderful doctors at Hopkins for my Mom --- they work with me and listen and truly understand (as much as anyone can) this disease. My heart goes out to everyone here who has had the misfortune of dealing with ill- informed, uncooperative medical personnel. You probably already posted his info, but please repeat for my feeble mind!!! How old is your Dad, when was he diagnosed, and how long has been in the nursing home? Thanks, Terri > Terri > Thank you for responding....this Ativan med. has been weighing on my > heart since I found out it could harm my dad. He needs a change in > meds. anyway as he has seemed to reach a point of mood change that is an > every day event. My dad is also on Zyprexa and he seems to be very > emotional, angry, easily agitated, and hard to approach. He lets me > take care of him when I am at the nursing home....have done it > all.....yet the staff usually has a hard time approaching him for meds., > showers, shaving., etc. He is SO emotional for my whole visit, crying > so very hard, that it is making it hard for me to see him that way. On > the other hand, I keep going, and find it hard to leave him. We are > weaning him off the Ativan for now, and after he is off that, we will > try some other type of med. for anger and agitation. His hallucinations > seem to be returning and worse than before. Probably another med., this > is so overwhelming and my heart goes out to him for having to deal with > this 24/7. Thank you for your concerns and for replying...it has been > very helpful. > Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2002 Report Share Posted February 1, 2002 Sandie, During all the time we were trying to find help, we survived with the ativan. When we found our neurologist, he had us discontinue the ativan and my husband had no lingering side effects from it. Remember that we all try to do the best we can with the information we have. Knowing what I know now, I would have had my husband on a low dose exelon about 4 years ago but at that time I had no clue. -lula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2002 Report Share Posted February 2, 2002 Hi Sandie - Thank you for the info. And I thought my Mom was young at diagnosis --- she was 67. She will be 71 in April. This disease IS just overwhelming. I haven't seen too many fluctuations in Mom either. She seems to decline and stay there for 3 to 4 months, then decline again. Although this most recent decline happened in a matter of one month. I appreciate your comments, and am glad you found this most wonderful group of people. The support here is heartwarming. Terri > Terri > My dad will be 65 in July. He was diagnosed with Diffuse Lewy Body > around the middle of 1997-about 4 1/2 yrs ago. My brother and I had > seen signs before then, but as I stated in my earlier posting that my > dad is more stubborn than the mule. He had a mild heart attack when > ended him up in the hospital. While in there, and seeming even more > confused than when at home, my brother and I consulted a neurologist to > come and check him out. That all lasted a year or so of many dr appts. > and trips to Iowa City until the neuro. came up with the diagnoses of > Diffuse Lewy Body. For safety reasons we moved him to a nursing home > that totally was not equipped nor educated in dealing with this disease > and my dad became very ill. He was so very dehydrated and > malnutritioned and had asperated food and liquids into his lungs which > gave him pneumonia. He then couldn't swallow any more and ended up with > a feeding tube. The tube seemed to really agitate him, yet he also knew > it was nutrition so he would take the tube and pull the extension from > his belly, swinging the tube with nutrition around and around. Well, > from that nursing home he was admitted several times to a geriatric > psych ward...and we ended up having him put in an Alzheimers Unit in > another nursing home. He seemed to taper off for a while and has again, > just progressed with his anger, agitation, gait, rigitity, > hallucinations, and mood swings. He has been in a nursing home since > Sept. of 1999. His changes have stayed, so I am inclined to think it is > more than the fluctuating of the disease. Thanks so much for your > concerns. Also, my brother has had a hard time accepting this, and > doesn't have a lot of time in his day to deal...he is very busy with his > family. I have over the passed 5 yrs become power of attorney, and > representative payee, have 3 boys and a husband, take care of all of > dads medical and financial issues and work 20-25 hrs at UPS. Sometimes > life can seem overwhelming. Hope I havn't babbled on too much. > Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2002 Report Share Posted February 3, 2002 Oh yes, that decision making... I don't ever recall my Mom being able to make a decision, as far back as I have memories. I just figured it was one of those things --- we all have things we aren't particularly good at. The personality versus disease thing is so puzzling, isn't it? In the end, I know that it doesn't much matter. We are all just dealing with the day-to-day reality of this terrible illness. Let me know how things work out for you at Hopkins with the new neurologist. Are you going to Dr Reich? Seems like I remember you mentioning this... If so, I don't think you'll be disappointed. Terri > In a message dated 2/2/02 8:19:56 AM Central Standard Time, tcsmail@d... > writes: > > > > The ironic thing here is that prior to becoming ill, Mom was the slowest > > person I'd ever met. > > This is interesting, Terri. Early in our relationship and prior to becoming > ill, my husband also seemed to be very slow. Not physically so much, but > decision-making (ah, those executive functions) and taking action. Then when > he DID everything fell into place without a leaf so much as rustling. > Personality or disease? I don't know. > > Cheryl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2002 Report Share Posted February 3, 2002 Hi Gloria - This is interesting... I'm not sure why Mom doesn't simply pass out, too, from exhaustion. Just one more thing that I don't understand. Thanks for your comments. Terri > > Dear Terri > My husband has " talking " hallucinations when he is supposed to be > sleeping. Most of the time his eyes are wide open. He is so exhausted the > next day that he can sleep for > 20 hours. This has happened every week for one day, but now it seems to be > happening more often. He is not combatitive, just sleepy after a night of > this talking. > gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 You are most welcome, and I hope the info helps you and your husband. Mom has an appointment this Thursday with Dr. Rabins. I am praying that he can find SOMETHING to get her to sleep. I'm an hour away from Hopkins, and with little help with Mom I'm afraid our opportunities to meet would be neglible. Still, I am so grateful for your kind words and support, as well as the other members of this wonderful group. It is both heartwarming and sad to see so many new members here. Let me know how things go for you at Hopkins. Terri > Terri. thank you SO MUCH for this input. Will definitely pursue. Maybe even > get to meet you while up there. Cheryl > > > Quote Link to comment Share on other sites More sharing options...
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