Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 , You have your hands full. Don't try to answer mail. Most of us are just here to let you know we care, and yet, do not expect you to jump through a hoop to answer mail on top of everything else. If there is a problem someone may ask specifically what medicines he is taking etc, but other than that, not to worry. Just keep on with the fine job you are doing. You might have to tell him they will use IVs and force fluids if he doesn't drink. I have found that Don can follow things like that a lot better than I used to think. Just because he can't follow instruction of " get that pen on the table for me " , doesn't mean he doesn't understand some things. I will tell him I will bring him home with me if he doesn't fuss when I take him back. He even said it today. He almost started fussing, and shut himself up, " Not to fuss " he said. If he fusses I will invariably stay home the next day. He thinks it was because it was all too hard on me, which it is. Loving and kind, but also set limits. " Drink your water or get an IV and catheter " . It may have to be said everyday. They do not know what they need, and they do not understand how hard it is on us, that is why we have to take control. Love with a smile, Imogene Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005. And then, with LBD 2006. A happy personality is contagious. Infect someone today. Yours Truly In a message dated 5/22/2009 3:48:52 P.M. Central Daylight Time, kitme@... writes: Hi everyone, Just spent the whole night in the ER. Luckily, I took off from work today. Dad takes medication for problem prostate gland. There was always problems before with urination because he couldn't remember to take his meds. After I started taking over his meds several years ago, there was never a problem. Recently, dad has been fixated on urinating. Complaining to me, always at night, he has a problem urinating and would like to go to the ER. His urologist has always said to have him drink more because he doesn't have anything in his bladder. Dad does not like to drink water. Even other things like juice, soda, etc, does take a long time for him to drink (hates it). So when the problem occurred last night, I told him to drink something. For 3 hours we battled about just drinking anything. Finally at 12:30 am, I finally gave in and took him to the ER. They put a Foley catheter in him and drained what little he had. This is the 4th time in a week that he complained that he couldn't urinate. This was the 2nd ER visit because of his " retention " . Both times--no problem. Follow up visits with doctor found no problems. He came home with the catheter on and because of the long weekend will not be able to see his urologist until 8am Tuesday morning. He has already gotten fixated on having the catheter in him. I can see him getting upset and asking me to take him back to the ER. I need to ask his urologist for a permanent fix. I am not getting much sleep. His dementia tells me that I am his son and this is what I am suppose to do for him. He does not seem to care that I am dead tired. We just visited his Internist yesterday. He is aware of our difficulty and said he should be placed. They are trying to get a social worker to come over to help with the process. Thanks for listening. I do read all postings. But I have had my hands full lately and haven't had a chance to respond to others' postings. Will try to get to them this weekend. Aloha, ------------------------------------ **************Stay connected and tighten your budget with a great mobile device for under $50. Take a Peek! (http://pr.atwola.com/promoclk/100122638x1221845911x1201401556/aol?redir=http://\ www.getpeek.com/aol) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 kitme wrote: > > Recently, dad has been fixated on urinating. ... My Dad complained that he had to urinate frequently without producing much urine. The third urologist we took him to found a small cluster of cancerous lesions. Removing them cured the problem. Unfortunately one of the other urologists put him on Vesicare which, like Enablex, greatly worsened his LBD symptoms. After the lesions were gone, he no longer needed any medication for urinary urgency. Good luck, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Dear , I've not welcomed you to our group yet, but sure do so now. I've been reading your posts and the suggestions others are sending you. It doesn't resolve the actual problem, but just so you know - people with dementia often " fixate " on bodily functions - having them, not having them, etc. My mom went through weeks of it, kept saying " I have to go, I have to go. " Meaning both urinating and defecating - she couldn't say which. Cosntant trips to the bathroom. When she got stabilized on the proper cognition med - in her case Razadyne - this fixation ended. It cleared her thinking enough so she could tell when she needed to use the bathroom. Sometimes people will have a urinary tract infection, but not be able to figure out what they need. They may talk about " going " but that's not the actual problem. This has happened with my mom, too. Did the ER doc order a urinalysis last night for your dad? If not, ask for one when the catheter is removed. Caths themselves are implicated in UTIs. Also, many older people in general and certainly those with dementia don't experience thirst as we do. They " just don't feel " thirsty nor do they want to drink. Will your dad eat things that have significant liquid content: applesauce, pudding, soups, popsicles, melons, etc? My mom went through this, too - wouldn't drink, but kept wanting to urinate. She would eat some of the above, which kept her from being dehydrated. Again, when the cognition med kicked in, she would at least agree to drink, although she still says she's never thirsty. You and your dad - all your family - are in my thoughts and prayers. Clearly he needs a good place that can provide care so you can manage other parts of your life, too. Sure do hope the social worker will be helpful. Keep us posted when you can - we all care. Peace, Lin Subject: Hospital To: LBDcaregivers Date: Friday, May 22, 2009, 3:38 PM Hi everyone, Just spent the whole night in the ER. Luckily, I took off from work today. Dad takes medication for problem prostate gland. There was always problems before with urination because he couldn't remember to take his meds. After I started taking over his meds several years ago, there was never a problem. Recently, dad has been fixated on urinating. Complaining to me, always at night, he has a problem urinating and would like to go to the ER. His urologist has always said to have him drink more because he doesn't have anything in his bladder. Dad does not like to drink water. Even other things like juice, soda, etc, does take a long time for him to drink (hates it). So when the problem occurred last night, I told him to drink something. For 3 hours we battled about just drinking anything. Finally at 12:30 am, I finally gave in and took him to the ER. They put a Foley catheter in him and drained what little he had. This is the 4th time in a week that he complained that he couldn't urinate. This was the 2nd ER visit because of his " retention " . Both times--no problem. Follow up visits with doctor found no problems. He came home with the catheter on and because of the long weekend will not be able to see his urologist until 8am Tuesday morning. He has already gotten fixated on having the catheter in him. I can see him getting upset and asking me to take him back to the ER. I need to ask his urologist for a permanent fix. I am not getting much sleep. His dementia tells me that I am his son and this is what I am suppose to do for him. He does not seem to care that I am dead tired. We just visited his Internist yesterday. He is aware of our difficulty and said he should be placed. They are trying to get a social worker to come over to help with the process. Thanks for listening. I do read all postings. But I have had my hands full lately and haven't had a chance to respond to others' postings. Will try to get to them this weekend. Aloha, ------------------------------------ Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Hi , sorry to hear of your night in ER. Your dad is suffering and is lucky you are such a caring son. You mentioned he is on Uroxatrol and Avodart. I've discovered that Uroxatrol is an anticholinergic and could be contraindicated in LBD. Even men who aren't demented are to be wary taking it. It can cause confusion, hallucinations, aggression etc. One has to wonder if this could be a big part of your dad's symptoms, exacerbated by LBD. The Avodart is a hormone which can also cause problems in some. Our los are just so sensitive to meds. I really don't know what is out there to help his symptoms with prostate but do suspect what he is getting now is not LBD friendly. Maybe someone else can suggest LBD friendly treatment for prostate problems. Perhaps upping the Seroquel would help or finding friendlier meds for prostate. I'm in over my head here now. All the best in getting the treatment to benefit your dad and help his LBD journey. > > > Hi everyone, > > Just spent the whole night in the ER. Luckily, I took off from work today. Dad takes medication for problem prostate gland. There was always problems before with urination because he couldn't remember to take his meds. After I started taking over his meds several years ago, there was never a problem. > > Recently, dad has been fixated on urinating. Complaining to me, always at night, he has a problem urinating and would like to go to the ER. His urologist has always said to have him drink more because he doesn't have anything in his bladder. > > Dad does not like to drink water. Even other things like juice, soda, etc, does take a long time for him to drink (hates it). So when the problem occurred last night, I told him to drink something. For 3 hours we battled about just drinking anything. Finally at 12:30 am, I finally gave in and took him to the ER. > > They put a Foley catheter in him and drained what little he had. This is the 4th time in a week that he complained that he couldn't urinate. This was the 2nd ER visit because of his " retention " . Both times--no problem. Follow up visits with doctor found no problems. > > He came home with the catheter on and because of the long weekend will not be able to see his urologist until 8am Tuesday morning. He has already gotten fixated on having the catheter in him. I can see him getting upset and asking me to take him back to the ER. > > I need to ask his urologist for a permanent fix. I am not getting much sleep. His dementia tells me that I am his son and this is what I am suppose to do for him. He does not seem to care that I am dead tired. > > We just visited his Internist yesterday. He is aware of our difficulty and said he should be placed. They are trying to get a social worker to come over to help with the process. > > Thanks for listening. I do read all postings. But I have had my hands full lately and haven't had a chance to respond to others' postings. Will try to get to them this weekend. > > Aloha, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 I am beginning to think that urinating or thinking they have to must go along with LBD. Ruth was forever going to the bathroom but lots and lots of times she never peed. The last few weeks of her life I would help her on and off the potty chair 3 or 4 times. One time I had just gotten her covers back on her and started to leave the room and she said she had to pee. Oh well its the journey. Jayn in S GA In a message dated 5/22/2009 7:58:10 P.M. Eastern Daylight Time, stim@... writes: Hi , sorry to hear of your night in ER. Your dad is suffering and is lucky you are such a caring son. You mentioned he is on Uroxatrol and Avodart. I've discovered that Uroxatrol is an anticholinergic and could be contraindicated in LBD. Even men who aren't demented are to be wary taking it. It can cause confusion, hallucinations, aggression etc. One has to wonder if this could be a big part of your dad's symptoms, exacerbated by LBD. The Avodart is a hormone which can also cause problems in some. Our los are just so sensitive to meds. I really don't know what is out there to help his symptoms with prostate but do suspect what he is getting now is not LBD friendly. Maybe someone else can suggest LBD friendly treatment for prostate problems. Perhaps upping the Seroquel would help or finding friendlier meds for prostate. I'm in over my head here now. All the best in getting the treatment to benefit your dad and help his LBD journey. > > > Hi everyone, > > Just spent the whole night in the ER. Luckily, I took off from work today. Dad takes medication for problem prostate gland. There was always problems before with urination because he couldn't remember to take his meds. After I started taking over his meds several years ago, there was never a problem. > > Recently, dad has been fixated on urinating. Complaining to me, always at night, he has a problem urinating and would like to go to the ER. His urologist has always said to have him drink more because he doesn't have anything in his bladder. > > Dad does not like to drink water. Even other things like juice, soda, etc, does take a long time for him to drink (hates it). So when the problem occurred last night, I told him to drink something. For 3 hours we battled about just drinking anything. Finally at 12:30 am, I finally gave in and took him to the ER. > > They put a Foley catheter in him and drained what little he had. This is the 4th time in a week that he complained that he couldn't urinate. This was the 2nd ER visit because of his " retention " . Both times--no problem. Follow up visits with doctor found no problems. > > He came home with the catheter on and because of the long weekend will not be able to see his urologist until 8am Tuesday morning. He has already gotten fixated on having the catheter in him. I can see him getting upset and asking me to take him back to the ER. > > I need to ask his urologist for a permanent fix. I am not getting much sleep. His dementia tells me that I am his son and this is what I am suppose to do for him. He does not seem to care that I am dead tired. > > We just visited his Internist yesterday. He is aware of our difficulty and said he should be placed. They are trying to get a social worker to come over to help with the process. > > Thanks for listening. I do read all postings. But I have had my hands full lately and haven't had a chance to respond to others' postings. Will try to get to them this weekend. > > Aloha, > > **************Stay connected and tighten your budget with a great mobile device for under $50. Take a Peek! (http://pr.atwola.com/promoclk/100122638x1221845911x1201401556/aol?redir=http://\ www.getpeek.com/aol) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 Hi , My mom had a similar problem...she insisted that she had to go to the bathroom almost constantly. I took her to the doctor who sent us to the emergency room because she could not urinate. We waited for over four hours in the ER waiting room and made probably more than 10 trips to the bathroom to no or very, very little urination. They finally tried to insert a catheter and it took them about 45 minutes because it wouldn't go in right. Then when they got it in place there was no urine in her bladder. This was the beginning of her going into the dying process. Has any doctor actually taken into consideration anything of that nature? If that is the problem then the doctor/hospital should be getting you in touch with hospice to make him comfortable during this time. I know this is a very difficult time for you, and then this new problem thrown into the mix. I pray that everything works out the best for your Dad...you are a wonderful son, ! Joan > > Hi everyone, > > Just spent the whole night in the ER. Luckily, I took off from work today. Dad takes medication for problem prostate gland. There was always problems before with urination because he couldn't remember to take his meds. After I started taking over his meds several years ago, there was never a problem. > > Recently, dad has been fixated on urinating. Complaining to me, always at night, he has a problem urinating and would like to go to the ER. His urologist has always said to have him drink more because he doesn't have anything in his bladder. > > Dad does not like to drink water. Even other things like juice, soda, etc, does take a long time for him to drink (hates it). So when the problem occurred last night, I told him to drink something. For 3 hours we battled about just drinking anything. Finally at 12:30 am, I finally gave in and took him to the ER. > > They put a Foley catheter in him and drained what little he had. This is the 4th time in a week that he complained that he couldn't urinate. This was the 2nd ER visit because of his " retention " . Both times--no problem. Follow up visits with doctor found no problems. > > He came home with the catheter on and because of the long weekend will not be able to see his urologist until 8am Tuesday morning. He has already gotten fixated on having the catheter in him. I can see him getting upset and asking me to take him back to the ER. > > I need to ask his urologist for a permanent fix. I am not getting much sleep. His dementia tells me that I am his son and this is what I am suppose to do for him. He does not seem to care that I am dead tired. > > We just visited his Internist yesterday. He is aware of our difficulty and said he should be placed. They are trying to get a social worker to come over to help with the process. > > Thanks for listening. I do read all postings. But I have had my hands full lately and haven't had a chance to respond to others' postings. Will try to get to them this weekend. > > Aloha, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2009 Report Share Posted July 29, 2009 Hello LBD Caregivers I have posted only once before. I believe my 83-year old father has LBD. I am actually taking him to a memory clinic at the University of Southern Florida (in Tampa) in two days and I am hoping we will find a great doctor there that is familiar with LBD. He only sees his family doctor so has not been diagnosed, but like many of you, I've been doing lots of reading and believe this is what he has. He has been in a memory unit at a local home for about 5 weeks-my 89-year old mother just couldn't take care of him any longer-and I live in Michigan. In the five weeks he has been at this home, they have sent him to the hospital 3 times. We have asked them not to, because it seems to do more harm than good-and each time they have not found anything wrong. One time he complained of chest pain, so I see why they sent him that time. The second time he was non-responsive-but he often has days like that-and the next day or the same afternoon he is fine again. Yesterday he fell (which he did at home frequently) so they sent him again. Have any of you experienced this at a nursing home or memory unit where your loved one lives--and been able to stop the frequent trips to the hospital? I am leaving tomorrow to spend several days in Florida and I plan to meet with the people at the memory unit where he now lives, but I'm worried they will tell me it is their policy that they have to send him to the hospital for every incident-friends have told me that this also happened when they had parents in a nursing home. Anyway, any words of wisdom would be appreciated! Diane P Schutt dpschutt@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2009 Report Share Posted July 29, 2009 Unfortunately, it's all about liability... His, Sherry s www.owly.net daughter of , (mis?)diagnosed with AD in 2005, diagnosed with LBD March 2008; in a NH, taking Aricept/Namenda, Seroquel, and Effexor for depression. http://www.facebook.com/SherrysMI - also tweet with the #lewybody hashtag . ----- Original Message ----- > I have posted only once before. I believe my 83-year old father has LBD. > I > am actually taking him to a memory clinic at the University of Southern > Florida (in Tampa) in two days and I am hoping we will find a great doctor > there that is familiar with LBD. He only sees his family doctor so has > not > been diagnosed, but like many of you, I've been doing lots of reading and > believe this is what he has. He has been in a memory unit at a local home > for about 5 weeks-my 89-year old mother just couldn't take care of him any > longer-and I live in Michigan. In the five weeks he has been at this > home, > they have sent him to the hospital 3 times. We have asked them not to, > because it seems to do more harm than good-and each time they have not > found > anything wrong. One time he complained of chest pain, so I see why they > sent him that time. The second time he was non-responsive-but he often > has > days like that-and the next day or the same afternoon he is fine again. > Yesterday he fell (which he did at home frequently) so they sent him > again. > Have any of you experienced this at a nursing home or memory unit where > your > loved one lives--and been able to stop the frequent trips to the hospital? > I am leaving tomorrow to spend several days in Florida and I plan to meet > with the people at the memory unit where he now lives, but I'm worried > they > will tell me it is their policy that they have to send him to the hospital > for every incident-friends have told me that this also happened when they > had parents in a nursing home. Anyway, any words of wisdom would be > appreciated! Quote Link to comment Share on other sites More sharing options...
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