Guest guest Posted January 8, 2009 Report Share Posted January 8, 2009 Hi Diane, Just want to put my two cents in. If you do go to Ann Arbor I can tell you that Dr. Heidebrink is awesome. She is the one that diagnosed Dad. She has an e-mail account and I would send and ask her questions and she would always personally get back to me within 24 hours. If she felt it was something we needed to discuss she would call me. I just can't say enough good things about her. Hugs to you, Leah > > > Subject: Re: Fw: Re: Hi, where in MI? > To: LBDcaregivers > Date: Friday, January 2, 2009, 11:14 AM > > > > > > > Welcome, Diane, from another Michigander, I see that your folks are > downstate, and close to Donna, that's good, there are more resources > available there than where I live. I'm sorry that your dad is going through > this but glad that you found the group. Lots of help and support here. > > His, > Sherry > Houghton Lake, MI > www.owly.net > daughter of , (mis?)diagnosed with AD in 2005, descent slowed by > Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my > house. We're learning to live with Lewy... > > -----Original Message----- > From: diane brown > > I hope I'm doing this right for everyone to see my message. I've spent a lot > of time reading all the postings and information on this site. I had my > mother read some of it while she was here and it helped her to understand > it's just not my dad with these symptoms. When I come to Michigan in January > I will have her go through some more of it. > > I can see from all the information the worst is yet to come for my > father...... I could barley get through some of the articles. My goal is to > educate myself as much as I can about LBD. To learn what I can do to help my > father and what I can do to help my mother cope a little better with whats > going on with him. As I mentioned in my personal message to you I will be > going to Michigan on more of a permanent basis when things get worse. My > kids are all in college and I have my wonderful husbands support. > > I am grateful I found this site. It all makes so much more sense now. If > I've done this right and all of you can see this I'm wondering if any of you > have had any experience with the drug Exelon. Also, this all started after > my father had surgery for kidney stones. I believe there is some > correlation. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Leah, Raquel and Donna, Thank you for your warm reply and words of encouragement. Here is my situation. I currently live in Kansas. My mother and father live in Michigan. I'm going next week to help my Mother for awhile. I'm planning within the next few months to go and stay for two or three months at a time then back to Kansas for a week and back to Michigan again. My kids are all in college and I have a wonderful husband. My brother (also in denial of my fathers illness) lives in Michigan, but has a young family and travels most of the week to Connecticut. My family is very ethnic (Armenian) typically will not put our elderly in a Nursing Home. My father at this point would never agree to a caretaker coming to the house. So it will be my Mom and I. She is able to get out some, but only for an hour. He panics when she is not there. My cousin actually owns a medical supply company for the elderly and will be able to find someone for us. I'm going to try and find someone to help my Mom when I'm not there. I thought about introducing this person to my father as a friend of mine from school and perhaps after a few visits while I'm there he might not mind if they stay while my Mom is out. That was a long story to get to my point. I feel so overwhelmed by it all. I know my father feels my Mothers agitation. Sometimes when things are bad she calls and I talk to him on the phone. He responds better and calms down because I speak softly and calmly to him. I'm anxious for my Mom to read all the posts. She did take the advice from one of the posts and is now doing the bills when he is asleep. Here's a question. He is starting to sleep a lot now. My Mother wakes him up because she feels bad that he's sleeping so much or that he may miss a meal. I suggested she let him sleep in the morning until she is ready for him to be up. So she can have some alone time. Often he wants to go to bed right after dinner. I told her she should let him do that a couple of nights a week again so she can have some time. I think she's afraid if she lets him sleep he won't wake up. Did I advise her to do the right thing? Okay.....that's long enough. Thank you all. Love to all. Diane Subject: Re: Fw: Re: Hi, where in MI? To: LBDcaregivers Date: Saturday, January 10, 2009, 5:30 PM Hi, Diane! Leah wrote something very important that you have to have in mind: " Most importantly, you and your mom need to take care of yourselves. Yes, things probably will get much worse and recognising that is important. You or your mom do not need to be there every minute of everyday. " That is SOOO true! I made the mistake of not asking for help, a little respite on the caregiving of my husband, and I can assure you, I was overwhelmed! Dealing with the difficulty for reasoning -or not reasoning at all-, the physical problems, the almost uninteligible way the patient speaks, the lack of understanding but their knowledge about what's going on (and the resulting depression), everything contributes to the caregiver/s stress and anxiety. Please, get some help to have somebody stay with your Dad for a few hours a week, or even every two weeks, so you and your Mom can get out and go to a movie, shopping, just for a ride, whatever will take your minds out of the caregiving responsibility. And when you do, don't talk about him or his illness! This is a suggestion from a friend who's been there, NOT DONE THAT. Hugs for you and your Mom. Make sure she reads the posts talking about the difficulty LBD patients have to understand just simple things. Love and patience are the only ways to deal with this illness. Whenever they see the caregiver agitated, impatient, worried or irritated, it reflects on them and they become even more difficult to deal with. I hope this is of some help to you. Love, Raquel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Dear Diane, Was there a change in his medication that might bring about the sleepiness? My Mom was on aricept for years, and about 2 years ago when the doctor added the namenda, she started to sleep a lot more... not sure if it's because of the namenda, or whether it was conincidental.... but we don't want to remove the namenda, b/c her cognition did " improve " and stablilize... Most times, my Mom goes to bed pretty early..... she may watch a little tv after dinner, or just want to go to bed after dinner. And then there are times that my aunt will tell me she's up till midnight.... If my Mom gets up early, then my aunt gives her breakfast, and many times, Mom will go back to sleep for a little bit. That's pretty much what happens most of the time... there are times, though, when she sleeps later, and that's ok too. You have to do what works for your family, I think. I understand your agony... there are wonderful people here, and it's great to know you're not alone. Sending hugs, Helene (in NY) From: Raquel Asay <la.melenseyahoo (DOT) com> Subject: Re: Fw: Re: Hi, where in MI? To: LBDcaregivers@ yahoogroups. com Date: Saturday, January 10, 2009, 5:30 PM Hi, Diane! Leah wrote something very important that you have to have in mind: " Most importantly, you and your mom need to take care of yourselves. Yes, things probably will get much worse and recognising that is important. You or your mom do not need to be there every minute of everyday. " That is SOOO true! I made the mistake of not asking for help, a little respite on the caregiving of my husband, and I can assure you, I was overwhelmed! Dealing with the difficulty for reasoning -or not reasoning at all-, the physical problems, the almost uninteligible way the patient speaks, the lack of understanding but their knowledge about what's going on (and the resulting depression), everything contributes to the caregiver/s stress and anxiety. Please, get some help to have somebody stay with your Dad for a few hours a week, or even every two weeks, so you and your Mom can get out and go to a movie, shopping, just for a ride, whatever will take your minds out of the caregiving responsibility. And when you do, don't talk about him or his illness! This is a suggestion from a friend who's been there, NOT DONE THAT. Hugs for you and your Mom. Make sure she reads the posts talking about the difficulty LBD patients have to understand just simple things. Love and patience are the only ways to deal with this illness. Whenever they see the caregiver agitated, impatient, worried or irritated, it reflects on them and they become even more difficult to deal with. I hope this is of some help to you. Love, Raquel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Diane: Where in Kansas do you live? I am in Topeka. If you are close by and ever need a listening ear, just let me know. I have been through the journey, and my husband died two years ago, seven years after initial dx of Alzheimer;s. However, he had both LBD and AD. I was always of the opinion that you never woke a sleeping baby, as so many people would do. Mine didn't sleep well, so believe me, I never woke them when they did. I think it is true of your mother just letting your father sleep. They don't need to be on a schedule, as such, and can eat or do other things when they awaken naturally. As time goes on, he will probably sleep more. Hope your mother keeps reading; she can get lots of helpful advice and answers to questions. That is quite a stress on you to travel to Michigan as often as you do. Good luck. June C. From: Raquel Asay <la.melenseyahoo (DOT) com> Subject: Re: Fw: Re: Hi, where in MI? To: LBDcaregivers@ yahoogroups. com Date: Saturday, January 10, 2009, 5:30 PM Hi, Diane! Leah wrote something very important that you have to have in mind: " Most importantly, you and your mom need to take care of yourselves. Yes, things probably will get much worse and recognising that is important. You or your mom do not need to be there every minute of everyday. " That is SOOO true! I made the mistake of not asking for help, a little respite on the caregiving of my husband, and I can assure you, I was overwhelmed! Dealing with the difficulty for reasoning -or not reasoning at all-, the physical problems, the almost uninteligible way the patient speaks, the lack of understanding but their knowledge about what's going on (and the resulting depression), everything contributes to the caregiver/s stress and anxiety. Please, get some help to have somebody stay with your Dad for a few hours a week, or even every two weeks, so you and your Mom can get out and go to a movie, shopping, just for a ride, whatever will take your minds out of the caregiving responsibility. And when you do, don't talk about him or his illness! This is a suggestion from a friend who's been there, NOT DONE THAT. Hugs for you and your Mom. Make sure she reads the posts talking about the difficulty LBD patients have to understand just simple things. Love and patience are the only ways to deal with this illness. Whenever they see the caregiver agitated, impatient, worried or irritated, it reflects on them and they become even more difficult to deal with. I hope this is of some help to you. Love, Raquel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Diane, My dad has had LBD for around 8 years now and since an episode in 2007 where he had to be hospitalized and then sent to a rehab center he has slept more and more. We have 2 caregivers who come into the house and take care of him so my mom only has to take care of his lunch and dinner. She gets upset if the caregivers don't get him up on time for lunch (1:00) and if he sleeps in his recliner after lunch too much. The caregiver puts him down for a nap for an hour or so before dinner and then after dinner he goes to bed around 9:30. Anyway, he's been sleeping much more--but I try to tell her that that's normal with Lewy Body. It's like she wants to keep to a schedule so that " things " appear more normal. We live out of town like you do and try to get down to visit once or twice a month as well as talking every day on the phone. I think I understand some of your stress and you are fortunate that you'll be able to go for extended periods of time to help your mom and dad. I have a part time job and have to be home some days to tend to that. Leah, Raquel, and Donna have given you great suggestions and support. This forum has been a godsend. I wish I had a solution to your situation, but I'm in somewhat the same boat--so I'll just keep rowing! Dianne P daughter of Bill, 85 From: Raquel Asay <la.melenseyahoo (DOT) com> Subject: Re: Fw: Re: Hi, where in MI? To: LBDcaregivers@ yahoogroups. com Date: Saturday, January 10, 2009, 5:30 PM Hi, Diane! Leah wrote something very important that you have to have in mind: " Most importantly, you and your mom need to take care of yourselves. Yes, things probably will get much worse and recognising that is important. You or your mom do not need to be there every minute of everyday. " That is SOOO true! I made the mistake of not asking for help, a little respite on the caregiving of my husband, and I can assure you, I was overwhelmed! Dealing with the difficulty for reasoning -or not reasoning at all-, the physical problems, the almost uninteligible way the patient speaks, the lack of understanding but their knowledge about what's going on (and the resulting depression), everything contributes to the caregiver/s stress and anxiety. Please, get some help to have somebody stay with your Dad for a few hours a week, or even every two weeks, so you and your Mom can get out and go to a movie, shopping, just for a ride, whatever will take your minds out of the caregiving responsibility. And when you do, don't talk about him or his illness! This is a suggestion from a friend who's been there, NOT DONE THAT. Hugs for you and your Mom. Make sure she reads the posts talking about the difficulty LBD patients have to understand just simple things. Love and patience are the only ways to deal with this illness. Whenever they see the caregiver agitated, impatient, worried or irritated, it reflects on them and they become even more difficult to deal with. I hope this is of some help to you. Love, Raquel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Diane, If you don't mind sharing where in MI is your Mom? I'm here in Michigan too. I agree with you on letting your Dad sleep but if he is physically able he should also be pushed to do physical activity like taking a walk and maybe some stretching excersizes to help keep him mobile longer. What kind of things did he used to like to do. Maybe your mom could take him to a " daycare " situation if there is something he would enjoy doing with other people for a couple of hours. Another idea if he wouldn't allow a caregiver is if there are any family friends, church members or other social club friends that would come to visit for a couple of hours once a week. That would give your mom an hour or so to do errands, get her hair done or just laydown for a nap knowing that someone is with your dad. I cannot stress enough, if people offer to help accept the help. I was fortunate that I had a lot of friends that offered to help but I couldn't think clear enough to tell them what I needed but now I can think of tons of things so here are some ideas. 1. Bring dinner over sometime even if it's just a sandwich. There are times you are just too tired to bother cooking after caregiving and handling paperwork, cleaning house, etc. 2. Run errands for you. Again, sometimes you are just too tired. I wish I would have thought to ask someone, hey, if I make the list and give you the money will you go to the grocery store for me (or the hardware, office supply, post office, whatever). 3. Clean house. When you are caregiving sometimes you just have to leave the dusting, moping and laundry. Most people are embarrassed to ask but even if you clean house together, as the saying goes, many hands make light work. 4. Organize. Especially if organization isn't your thing and you know someone that is very organized. I'm usually very organized but because I was doing twice the amount of paperwork it was very easy to get disorganized especially when something would happen like the week Dad spent at the hospital. I was spending so much time up there that all the mail and stuff got behind. 5. Research. Sometimes there were things I needed to research but just didn't have time to do it all myself. There are somethings you almost have to do it yourself but there are things that can be deligated. I hope this is helpful. Hugs to you, Leah > > > Subject: Re: Fw: Re: Hi, where in MI? > To: LBDcaregivers > Date: Saturday, January 10, 2009, 5:30 PM > > > > > > > Hi, Diane! > Leah wrote something very important that you have to have in mind: > > " Most importantly, you and your mom need to take care of yourselves. > Yes, things probably will get much worse and recognising that is > important. You or your mom do not need to be there every minute of > everyday. " > > That is SOOO true! I made the mistake of not asking for help, a little respite on the caregiving of my husband, and I can assure you, I was overwhelmed! Dealing with the difficulty for reasoning -or not reasoning at all-, the physical problems, the almost uninteligible way the patient speaks, the lack of understanding but their knowledge about what's going on (and the resulting depression), everything contributes to the caregiver/s stress and anxiety. Please, get some help to have somebody stay with your Dad for a few hours a week, or even every two weeks, so you and your Mom can get out and go to a movie, shopping, just for a ride, whatever will take your minds out of the caregiving responsibility. And when you do, don't talk about him or his illness! > This is a suggestion from a friend who's been there, NOT DONE THAT. Hugs for you and your Mom. Make sure she reads the posts talking about the difficulty LBD patients have to understand just simple things. Love and patience are the only ways to deal with this illness. Whenever they see the caregiver agitated, impatient, worried or irritated, it reflects on them and they become even more difficult to deal with. I hope this is of some help to you. > Love, > Raquel > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 I think your are on the right track, Diane. As it's being suggested, schedules don't seem so important as long as the patient gets up, moves a little and eats -the timetable doesn't matter much. Not all have the same sleepiness, but my husband did -he slept a lot, especially the last months, and I think that's much better than to have them to sleep too little, because the lack of rest makes them agitated, more confused and irritated, and that is worse for the caregiver too. If your Mom has access to a computer, you should try to get her into this group. She'll learn a lot and receive a lot of good advice and support. Hugs, Raquel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Diane, I loved your story! Yes, we do need something funny once in a while. I bought Don an electric shaver. I sure hope he doesn't get that idea. He doesn't use it. I shave him, or the staff shaves him when he gets a bath. Love a lot, Imogene In a message dated 1/12/2009 1:06:02 AM Central Standard Time, dbrown0715@... writes: Girls, Thank you for all your suggestions! I live in Leawood, Kansas and my parents live in West Bloomfield, Michigan. I grew up in Farmington, Michigan. Okay....here's a funny story, my Mom gave my dad his eclectic shaver and told him it was time to shave. She turned it on for him and left him in the bathroom. After about 15 minutes she went upstairs....he had the bathroom door closed....she knocked and opened the door. My father had his pants down and was using the shaver on his pubic hair! She asked what he was doing and he told her that " stuff down there " bothered him. Yikes! My Mom called me and we had a good laugh. I hope you all don't think that was inappropriate......sometimes you just have to laugh at the things they do. Believe me we have cried plenty. Anyway, getting anxious for my trip. Spoke to my brother today about bringing in a caregiver when I was not there. He agreed it would be a good idea. He also thinks my Mother babies my father too much. For instance drying him off after a shower or helping him off with his clothes. My brother says when my Dad is with him he does it himself. When they were here at Christmas there was no way my Dad could take his shirt up over his head. Please keep my Father Mickey and my Mother Rose in your prayers. Love to all, Diane **************New year...new news. Be the first to know what is making headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Donna, Do you think if someone showed no signs of Dementa that being put under can trigger it? Diane From: jonaslaj <jonaslajyahoo (DOT) com> Subject: Fw: Re: Hi, where in MI? To: LBDcaregivers@ yahoogroups. com Date: Thursday, January 8, 2009, 6:25 PM Hi Diane, Just want to put my two cents in. If you do go to Ann Arbor I can tell you that Dr. Heidebrink is awesome. She is the one that diagnosed Dad. She has an e-mail account and I would send and ask her questions and she would always personally get back to me within 24 hours. If she felt it was something we needed to discuss she would call me. I just can't say enough good things about her. Hugs to you, Leah > > From: Sherry UpNorth <upnorth@... > > Subject: Re: Fw: Re: Hi, where in MI? > To: LBDcaregivers@ yahoogroups. com > Date: Friday, January 2, 2009, 11:14 AM > > > > > > > Welcome, Diane, from another Michigander, I see that your folks are > downstate, and close to Donna, that's good, there are more resources > available there than where I live. I'm sorry that your dad is going through > this but glad that you found the group. Lots of help and support here. > > His, > Sherry > Houghton Lake, MI > www.owly.net > daughter of , (mis?)diagnosed with AD in 2005, descent slowed by > Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my > house. We're learning to live with Lewy... > > -----Original Message----- > From: diane brown > > I hope I'm doing this right for everyone to see my message. I've spent a lot > of time reading all the postings and information on this site. I had my > mother read some of it while she was here and it helped her to understand > it's just not my dad with these symptoms. When I come to Michigan in January > I will have her go through some more of it. > > I can see from all the information the worst is yet to come for my > father...... I could barley get through some of the articles. My goal is to > educate myself as much as I can about LBD. To learn what I can do to help my > father and what I can do to help my mother cope a little better with whats > going on with him. As I mentioned in my personal message to you I will be > going to Michigan on more of a permanent basis when things get worse. My > kids are all in college and I have my wonderful husbands support. > > I am grateful I found this site. It all makes so much more sense now. If > I've done this right and all of you can see this I'm wondering if any of you > have had any experience with the drug Exelon. Also, this all started after > my father had surgery for kidney stones. I believe there is some > correlation. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 No, Diane, I think the dementia will show up and it is just a matter of time. It seems that what ever they use to put them under hits the brain. And then the dementia happens quicker. Hugs, Donna R Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. Re: Fw: Re: Hi, where in MI? > To: LBDcaregivers@ yahoogroups. com > Date: Friday, January 2, 2009, 11:14 AM > > > > > > > Welcome, Diane, from another Michigander, I see that your folks are > downstate, and close to Donna, that's good, there are more resources > available there than where I live. I'm sorry that your dad is going through > this but glad that you found the group. Lots of help and support here. > > His, > Sherry > Houghton Lake, MI > www.owly.net > daughter of , (mis?)diagnosed with AD in 2005, descent slowed by > Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my > house. We're learning to live with Lewy... > > -----Original Message----- > From: diane brown > > I hope I'm doing this right for everyone to see my message. I've spent a lot > of time reading all the postings and information on this site. I had my > mother read some of it while she was here and it helped her to understand > it's just not my dad with these symptoms. When I come to Michigan in January > I will have her go through some more of it. > > I can see from all the information the worst is yet to come for my > father...... I could barley get through some of the articles. My goal is to > educate myself as much as I can about LBD. To learn what I can do to help my > father and what I can do to help my mother cope a little better with whats > going on with him. As I mentioned in my personal message to you I will be > going to Michigan on more of a permanent basis when things get worse. My > kids are all in college and I have my wonderful husbands support. > > I am grateful I found this site. It all makes so much more sense now. If > I've done this right and all of you can see this I'm wondering if any of you > have had any experience with the drug Exelon. Also, this all started after > my father had surgery for kidney stones. I believe there is some > correlation. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Diane, I followed Mom's lead. If she was stuggling, I helped. If she could do it herself, I let her try. They don't like to think they can't do it and the less that is made it seems the better. But if their frustration goes up, that really doesn't do them any good either. Hugs, Donna R Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. Re: Fw: Re: Hi, where in MI? To: LBDcaregivers@ yahoogroups. com Date: Saturday, January 10, 2009, 5:30 PM Hi, Diane! Leah wrote something very important that you have to have in mind: � " Most importantly, you and your mom need to take care of yourselves. Yes, things probably will get much worse and recognising that is important. You or your mom do not need to be there every minute of everyday. " � That is SOOO true! I made the mistake of not asking for help, a little respite on the caregiving of my husband, and I can assure you, I was overwhelmed! Dealing with the difficulty for reasoning -or not reasoning at all-, the physical problems, the almost uninteligible way the patient speaks, the lack of understanding but their knowledge about what's going on (and the resulting depression), everything contributes to the caregiver/s stress and anxiety. Please, get some help to have somebody stay with your Dad for a few hours a week, or even every two weeks, so you and your Mom can get out and go to a movie, shopping, just for a ride, whatever will take your minds out of the caregiving responsibility. And when you do, don't talk about him or his illness! This is a suggestion from a friend who's been there, NOT DONE THAT. Hugs for you and your Mom. Make sure she reads the posts talking about the difficulty LBD patients have to understand just simple things. Love and patience are the only ways to deal with this illness. Whenever they see�the caregiver�agitated, impatient, worried or irritated, it reflects on them and they become even more difficult to deal with. I hope this is of some help to you. Love, Raquel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Dear Diane, I don't know about your Dad, but I tend to side with you and your Mom. My husband had days when he would wake up by himself and come to my office-room all dressed up, even with his belt on. Other days I had to wake him up and help him all the way to get dressed; sometimes, he would just sit at the edge of the bed not knowing what to do next. So I think that is good your Mom is on the look out for him. She should let him do as much as he can, when he can, and just help him the days he is unable to help himself. I always told my husband something like " Let me help you so you get dressed faster " or " so you won't get cold " or " so you can eat your breakfast " , just anything that was non judgmental or critical. Hope it helps! My love to you and your Mom, Raquel Quote Link to comment Share on other sites More sharing options...
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