Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 , One of the more important forms to get filled out is the DP of Health care. Seems like she can still understand and I was a few months late and didn't get one filled out. Everyone should have one and I haven't gotten mine done yet. Duh! But as long as she understands what she is filling out you can have her sign it. I was told the guardianship was no big deal and I could do it myself easily. I happen to have an older DPA and it said I have say in all areas of her life and I have never spent the money on gs as I had other problems I won't go into right now. And I have no siblings to deal with re her care. So the DPA has gotten me through 4 years. It is as good as a gs. My Mom is in a nh for the last year. Not the best, but close and I can be there 4 times a day if I need to and there have been times I needed to do that. LBS patients really do not work well in a nh as they can't seem to follow what they are " suppose " to do like some patients. And this nh didn't want to work with me and trust what I already knew from her being with me 3 years . They made more problems than they solved. The other problem I had was that Mom was diagnosed with Alzheimers. And I ran into no one who knew what LBD was. So they go on pretending she has AD. I just have to fight with them more about meds. I got suspicious when she was in day care and didn't seem to be like a lot of people in the daycare program. So I went searching for what else it could be. Mom didn't have a lot of tremors. She prided herself on how well she could fall. And had a lot of the LBD symptoms. She is now doing almost a every two day up and down. And she has been for the past couple of weeks, not eating or drinking very well. Just when I think I am going to find her gone, she is back up and running the halls. And I am about to have all her meds reduced to nothing. If you think the nh likes that, let me sell you a big bridge. And she is really struggling with Depends. She would wait until I came to feed her at noon and I would put her on the toilet. I couldn't get the nh staff to do that either. Now she is dead weight and I quit taking her and she if mortified every time she has to go. She is 88 and still knows some things. This nh sees her as just another really confused patient. And they continue to want to over medicate her. And it doesn't take much. Then I have more problems with the nh and mom gets worse. But the stories you tell about driving and getting better etc, are all ones I have been through. I just plugged along an hour at a time, day by day. My daughter has helped me or I couldn't have done it. I kept trying clever things to get us through this and she fought it all the way. I " stole " all her stuff and money. And she didn't know what I did all day anyway!!!!! My Mom was youngest girl of 5. And she acts just like that. My daughter use to call her " Queeny Dody, " and Mom would laugh because she knew what my daughter meant. Actually kind of prided herself on it. It sounds like you know what you need to do and are doing it as fast as you can. I use to laugh and tell Mom I was " running as fast as I could. " The reason I suggested a lawyer was because when I ended up with her here in MI and her home in Wis, I got in all sorts of trouble with medicaid. Michigan has different laws than Wis. I ended up hiring a lawyer that worked both sides of the border. And found out way to late I could have been taking up to the average cost of a nh in MI every month while she was with me. She would have ended up on Medicaid way sooner than she did. But I never thought I would have to put her in a nh. WRONG. So it is always good to get legal input if you can and know what to ask. As legal guardian you can get reimbursed. Why that is important is because once she goes on Medicaid, they get her money and she still needed things I now have to pay for myself. Glad it is helpful that I wrote and feel free to write me directly any time you would like. Good luck. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 A DPA is a durable power of attorney. I have that for my dads medical and financial needs. I also have a letter from the neurologist that diagnosed dad, stating he is no longer able to make his own decisions, therefore, backing up the power of attorney. I have found though, with Medicare, and Medicaid, power of attorney is not recognized. I just about flipped when those offices told me that. So, one more trip and paper to sign....now I am also representative payee. All I had wanted to do was change my dads address....now I have access to any and all state information. Next, and soon, I will go for legal guardianship. It has been recommended to me by a psychiatric office, guess it helps with hospital admissions and such. All in all, I just wanted to be the daughter yet I would do it all over again if it means I have the final word on my dads care and not some person that barely knows him. Best of luck with all of this fiasco. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Barb, You need to take the original copy of the POA to local SS office. They will make a copy of it. Your husband's social security card and photo ID for yourself. They will fill out forms for you to sign and send a form to your husband's doctor. He will have to say that it is not mentally competent. Their version of POA is making you the Representative Payee. Once a year you will get a form from them to give a general accounting of how the monies were spent. I just did this for my Mom. Hope this helps. Mariea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 In a message dated 8/19/02 7:57:56 AM Central Daylight Time, susanenglish@... writes: > I've thought of pulling the plug on her, getting rid of the help, & letting > her stew in her own juices. She will get into new trouble then & will buy > a quick ticket to the nh. But....my conscience won't let me do that. How > about getting rid of that Aricept? She might be more managable. Yikes, but I am lucky my husband is so much easier to deal with!! We live with a lot in regards to our decisions, don't we? I can see your temptation to get rid of the Aricept - she probably really IS functioning better to a degree. It does help with awareness, too. Butttttt - I don't think I'd want to get rid of it, because it can also help her ability to reason and possibly slow her decline. Has it been a full 3 months? I don't recall. But that's how long it takes to fully kick in. I don't think it will change her personality, though. Boy, , I do NOT envy you!! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 In a message dated 8/19/02 7:57:56 AM Central Daylight Time, susanenglish@... writes: > I've thought of pulling the plug on her, getting rid of the help, & letting > her stew in her own juices. She will get into new trouble then & will buy > a quick ticket to the nh. But....my conscience won't let me do that. How > about getting rid of that Aricept? She might be more managable. Yikes, but I am lucky my husband is so much easier to deal with!! We live with a lot in regards to our decisions, don't we? I can see your temptation to get rid of the Aricept - she probably really IS functioning better to a degree. It does help with awareness, too. Butttttt - I don't think I'd want to get rid of it, because it can also help her ability to reason and possibly slow her decline. Has it been a full 3 months? I don't recall. But that's how long it takes to fully kick in. I don't think it will change her personality, though. Boy, , I do NOT envy you!! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Barb, Can you call them {SS} and fax? The fax has saved me while I had to work with both MI and WI problems. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Barb, Can you call them {SS} and fax? The fax has saved me while I had to work with both MI and WI problems. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Barb I have POA over dads medical and financial decisions. He also has advance directives in a living will. One time while on the phone with Medicare and wanting to change his address info. I was told a durable POA is not recognized with the Federal Government. So, I had to go to our local Federal Building, take my proof of POA, since my dad was not with me, and give dads information to them. They took a copy of the POA, I signed a form stating I am now representative payee and I was off. What it entails is once a year I have to fill out yet another form stating where my dads money went for the previous year as I am in charge of his money. Guess it guarantees the government that financially they will get their money...now through me. It also gives me all access to dads information through the govt. without the need for his permission. I have been advised by a neuro-psychiatric office to obtain Legal Guardianship over my dad. Haven't had a chance to speak to a lawyer yet, that will be next week after my day job is over. Hopefully this helps...best of luck to you! Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Barb, For the last 4 years I have only had a POA. I was on my mother's bank accounts and I could never move all of the account, but I just kept the same bank account and never had a problem . The POA has gotten me into hospitals and the nh with her. They get mad but POA is a valid document to do everything I have needed to do. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Barb, For the last 4 years I have only had a POA. I was on my mother's bank accounts and I could never move all of the account, but I just kept the same bank account and never had a problem . The POA has gotten me into hospitals and the nh with her. They get mad but POA is a valid document to do everything I have needed to do. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Barb, For the last 4 years I have only had a POA. I was on my mother's bank accounts and I could never move all of the account, but I just kept the same bank account and never had a problem . The POA has gotten me into hospitals and the nh with her. They get mad but POA is a valid document to do everything I have needed to do. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Barb, PS I have gotten Mom on Medicaid with my POA also. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Barb, PS I have gotten Mom on Medicaid with my POA also. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Barb, PS I have gotten Mom on Medicaid with my POA also. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 , Can your son take the distributor cap off or the battery out of the car and disable it. It is often easier than trying to take keys away. Or does someone there use the car. You may also get a switch on it that disables it so others can use it but she can't figure it out. Mom did the same thing and with no insurance. I thought if we took the insurance off she would never drive it, but she did. So I got rid of the car. Mom went on hospice yesterday. She has mostly been sleeping. My mom never could take Aricept either. She went bonker with about 5 pills and I quit. Exlon wasn't available then but it can be used much in the same way I think. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 , Can your son take the distributor cap off or the battery out of the car and disable it. It is often easier than trying to take keys away. Or does someone there use the car. You may also get a switch on it that disables it so others can use it but she can't figure it out. Mom did the same thing and with no insurance. I thought if we took the insurance off she would never drive it, but she did. So I got rid of the car. Mom went on hospice yesterday. She has mostly been sleeping. My mom never could take Aricept either. She went bonker with about 5 pills and I quit. Exlon wasn't available then but it can be used much in the same way I think. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 , Can your son take the distributor cap off or the battery out of the car and disable it. It is often easier than trying to take keys away. Or does someone there use the car. You may also get a switch on it that disables it so others can use it but she can't figure it out. Mom did the same thing and with no insurance. I thought if we took the insurance off she would never drive it, but she did. So I got rid of the car. Mom went on hospice yesterday. She has mostly been sleeping. My mom never could take Aricept either. She went bonker with about 5 pills and I quit. Exlon wasn't available then but it can be used much in the same way I think. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 In a message dated 8/20/02 7:29:06 AM Central Daylight Time, mido101@... writes: > My mom never could take Aricept either. She went bonker with about 5 pills > and I quit. Donna, would you mind telling me what happened when she went " bonkers? " please? Thanks, Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 In a message dated 8/20/02 7:29:06 AM Central Daylight Time, mido101@... writes: > My mom never could take Aricept either. She went bonker with about 5 pills > and I quit. Donna, would you mind telling me what happened when she went " bonkers? " please? Thanks, Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 In a message dated 8/20/02 7:29:06 AM Central Daylight Time, mido101@... writes: > My mom never could take Aricept either. She went bonker with about 5 pills > and I quit. Donna, would you mind telling me what happened when she went " bonkers? " please? Thanks, Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 It has been a while Cheryl, since Mom went bonkers on Aricept. As I recall she got so highly agitated and I remember telling the MD, " she is bouncing off walls. " And she wasn't sleeping but every other night anyway. And it got worse and she did worse with even less sleep. I think at five pills I called the Md and he said just stop it. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 It has been a while Cheryl, since Mom went bonkers on Aricept. As I recall she got so highly agitated and I remember telling the MD, " she is bouncing off walls. " And she wasn't sleeping but every other night anyway. And it got worse and she did worse with even less sleep. I think at five pills I called the Md and he said just stop it. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 It has been a while Cheryl, since Mom went bonkers on Aricept. As I recall she got so highly agitated and I remember telling the MD, " she is bouncing off walls. " And she wasn't sleeping but every other night anyway. And it got worse and she did worse with even less sleep. I think at five pills I called the Md and he said just stop it. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 No, , I never got " grateful " either. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 No, , I never got " grateful " either. Donna To learn more about LBD Disease, please visit the Lewy Body Disease Association site at: http://www.lewybodydisease.org Quote Link to comment Share on other sites More sharing options...
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