Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 Jeanne, We took a water-friendly book into the tub the other day (Kennedy's love of life is books), and we began with playing with the book and sprinkling her with her little gardening-type watering can. The actually scrubbing/washing was kept to a minimum and she didn't cry until I had to lean her back to rinse her hair. I'm trying to think of a way not to have to tip her back as this seems to be where the fear is really at. Mom to Kennedy 22 mos old CHARGEr, 10, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 behaviors I really can relate. Caitlyn has the oddest most severe phobias. She is terrified of other kids her age, she screams until her face is so swollen you can barely recognize her and she screams some more. A TV commercial for Denny's upset her so much that she was hysterical any time the TV was on for 2 mos. afterwards and after a couple more months, the ad aired again and we lost all the progress we worked so hard to gain. A book " she gave " her dad for father's day that he read to her every night -- he accidentally skipped a page reading one day and she became terrified of the book for 3 months afterward. Anyway, I'll tell you what worked for the TV. Caitlyn loves Barney. So we put her Barney tape on in another room and told her she would have to stay in that room listening to her tape until she stopped crying. It took awhile but eventually she did calm down and slowly make her way out of that room and towards us where she could still hear her tape playing. For several months we were unable to hear the TV over the sound of her tape, but eventually she got over her fear. I just hope the ad never airs again. Does Kennedy have any obsessions with anything she likes that you could use to help ease her in the bath? When Caitlyn was terrified of the water, I used a little bowl of water and splashed her hands and feet in it. When she got used to that I got into the tub with her and held her in my arms while I bathed her. It was difficult and she was under a year old but eventually she became comfortable with the water. I know how frustrating it is to have to work so hard to regain a goal had. Unfortunately this probably is not the last time this will happen. I've learned to take it in stride as another CHARGE thing. jeanne --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2000 Report Share Posted February 10, 2000 Barbra- I loved the way you handled 's new class. I hope that I am that wise and thoughtful when my time comes. Michele W mom to Aubrie (26 mos) CHaRgE and (8 yrs), wife to DJ, in IL west@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Barbra M. It sounds like you did everything right with . Meri needs to have her 1-1 aide with her and it seems like that is what is so very frustrating to her. Her aide isn't a specialist--just a regular school aide. She's worked with an autistic child but I guess she didn't have to do much for her. I love that you focused on all of 's positives. I find that a challenge with the teachers to make sure they see all of Meris wonderful characteristics. Tim, Meredith is completely verbal. That's what makes this so challenging. She can tell us what's wrong but she chooses not to? I think. I really wonder sometimes though, what it is that keeps her from making the right choice. I guess we all make the wrong choices sometimes--but I think you know what I mean. Our school social worker said she thinks Meri needs more help than the school can give her. Thank you for all understanding. Sometimes being a CHARGE parent is a lonely place to be--so rewarding but so hard. Thanks Audrey Dwyer Mommy of 8, Meredith 6 (with CHARGE) and 5 Mount Sinai, New York e-mail: AUD0805@... ---------- > From: CHARGEonelist > To: CHARGEonelist > Subject: Digest Number 788 > Date: Thursday, February 10, 2000 3:28 PM > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 , I'll address the question you asked to the caregiver. My dad (lives at home) has LBD and we have 24/7 care, but my mom feels as if she HAS to be there as well. She does all of the meal planning/cooking but other than that has little responsibility for my dad's care. We live 3 hours away and go home a few times a month and have tried to get her to come up here for a little respite but she refuses to come. She does get out to have her hair done once a week and she goes to the grocery store/pharmacy. But that's it! I know her morale is low and getting away would do her a world of good, but she just feels that if she leaves and something happens to my dad she'd never forgive herself. Dianne P daughter of Bill, 85 Subject: behaviors To: LBDcaregivers Date: Sunday, July 20, 2008, 2:34 PM I have a few questions and would like everyone's opinion. My mom is the main caregiver to my dad, we go over their house quite a bit, myself, sister and brother., but it still is my mom that is the main caregiver. She doesn't like to ask for help (she feels she is inconvieniencing us, we have our own life etc) she did finally get some help through VA. She gets respite and someone to come in and bath him. But the problem is it seems like when my mom gets out of the house my dad gets upsets and I swear he retaliates in some way. Last time she went out he pee'd all over the hallway just outside the bathroom. Last night she went to the movies and dinner and he left the water on all night in the kitchen sink and it flooded the kitchen. When you ask him why he did it, he tells you it wasn't him. THis morning after the incident with the kitchen my mom called my brother and he came over with my brother in law to fix it and my dad was agitated and wanted to know why all these people were there and he was leaving. When he tried to leave my mom tried to stop him and he acted like he was going to hit her. My brother in law jumped in front of her and he said he was going to hit him. My mom feels these things have gotten worse since she started having these respite care workers come in. I know this is taking a toll on my mom and I am not sure what to do. Has anyone else had this problem with their loved one. When you go out they get angry at you? When she comes home you can watch him and see that he is pouting. Also a question to the caregiver ... Do you feel like you have to hold on as long as you can taking care of your husband or wife because you feel like you are letting your kids down, or that it might upset them. Just wondering if this is what my mom is doing. I know I should talk to her about this and asure her that she needs to do what she needs to do. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Kathy, Your Dad might not be retaliating at all, but when she is there, she keeps him from doing that. He just doesn't remember what all needs to be done to stop the water. They can't process. I remember a time I went to Mom's and asked her what she had for lunch, She said mind my own business she ate. She had warmed some stuff in the micro. And she had. And it was still in the micro when I opened it. So she could do part of the process. But warming it, didn't get it eaten. And if your Mom has help there, they may not do all the things your Mom does for him. Mom got really mad if I spent any time away from her. Her mind didn't understand I might want some time for myself and needed it to take care of her when I did. Don't know if this helps but if one or more of the kids can be there while she is gone, that may help. If your Mom has one of you to rely on and really depend on, she may be able to feel free to get away. Hired help is different than family. Even if it take more than one of you to do it. Make plans for her once a week to be gone and you guys take up the slack.. I am sure she would really appreciate it. I did. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. behaviors � � I have a few questions and would like everyone's opinion. � My mom is the main caregiver to my dad, we go over their house quite a bit, myself, sister and brother., but it still is my mom that is the main caregiver.� She doesn't like to ask for help (she feels she is inconvieniencing us, we have our own life etc)� she did finally get some help through VA.� She gets respite and someone to come in and bath him.� But the problem is it seems like when my mom gets out of the house my dad gets upsets and I swear he retaliates in some way.� Last time she went out he pee'd all over the hallway just outside the bathroom.� Last night she went to the movies and dinner and he left the water on all night in the kitchen sink and it flooded the kitchen.� When you ask him why he did it, he tells you it wasn't him.� THis morning after the incident with the kitchen my mom called my brother and he came over with my brother in law to fix it and my dad was agitated and wanted to know why all these people were there and he was leaving.� When he tried to leave my mom tried to stop him and he acted like he was going to hit her.� My brother in law jumped in front of her and he said he was going to hit him.� � My mom feels these things have gotten worse since she started having these respite care workers come in.� I know this is taking a toll on my mom and I am not sure what to do. � Has anyone else had this problem with their loved one.� When you go out they get angry at you?��� When she comes home you can watch him and see that he is pouting. � Also a question to the caregiver ... Do you feel like you have to hold on as long as you can taking care of your husband or wife because you feel like you are letting your kids down, or that it might upset them.� � Just wondering if this is what my mom is doing.� I know I should talk to her about this and asure her that she needs to do what she needs to do. � Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Kathy - to expand on this thought... if your mom refuses your participation in order for her to get some respite... don't tell her... she'll have a caregiver scheduled already for your dad and then when you know she's left the house, you go to your dad's. The caregiver is there to do what he/she has to do - and you're there just as a calming effect for your dad. Then he won't be so upset when your mom is out and your mom gets the respite she needs... Just a thought... > > Kathy, > > Your Dad might not be retaliating at all, but when she is there, she keeps him from doing that. He just doesn't remember what all needs to be done to stop the water. They can't process. I remember a time I went to Mom's and asked her what she had for lunch, She said mind my own business she ate. She had warmed some stuff in the micro. And she had. And it was still in the micro when I opened it. > > So she could do part of the process. But warming it, didn't get it eaten. And if your Mom has help there, they may not do all the things your Mom does for him. > > Mom got really mad if I spent any time away from her. Her mind didn't understand I might want some time for myself and needed it to take care of her when I did. > > Don't know if this helps but if one or more of the kids can be there while she is gone, that may help. If your Mom has one of you to rely on and really depend on, she may be able to feel free to get away. Hired help is different than family. Even if it take more than one of you to do it. Make plans for her once a week to be gone and you guys take up the slack.. I am sure she would really appreciate it. I did. > > Hugs, > > Donna R > > Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. > She was almost 89 when she died in '02. No dx other than mine. > > > behaviors > > � > � > I have a few questions and would like everyone's opinion. > � > My mom is the main caregiver to my dad, we go over their house quite a bit, myself, sister and brother., but it still is my mom that is the main caregiver.� She doesn't like to ask for help (she feels she is inconvieniencing us, we have our own life etc)� she did finally get some help through VA.� She gets respite and someone to come in and bath him.� But the problem is it seems like when my mom gets out of the house my dad gets upsets and I swear he retaliates in some way.� Last time she went out he pee'd all over the hallway just outside the bathroom.� Last night she went to the movies and dinner and he left the water on all night in the kitchen sink and it flooded the kitchen.� When you ask him why he did it, he tells you it wasn't him.� THis morning after the incident with the kitchen my mom called my brother and he came over with my brother in law to fix it and my dad was agitated and wanted to know why all these people were there and he was > leaving.� When he tried to leave my mom tried to stop him and he acted like he was going to hit her.� My brother in law jumped in front of her and he said he was going to hit him.� > � > My mom feels these things have gotten worse since she started having these respite care workers come in.� I know this is taking a toll on my mom and I am not sure what to do. > � > Has anyone else had this problem with their loved one.� When you go out they get angry at you?��� When she comes home you can watch him and see that he is pouting. > � > Also a question to the caregiver ... Do you feel like you have to hold on as long as you can taking care of your husband or wife because you feel like you are letting your kids down, or that it might upset them.� > � > Just wondering if this is what my mom is doing.� I know I should talk to her about this and asure her that she needs to do what she needs to do. > � > Kathy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Kathy, In reference to letting the water running, my husband has done that numerous times. I even wondered if it was me that left it running at first, until I saw him walk away and it was still running. I really doubt my husband realized he had done that. Lorraine husband, 57 Diagnosed with PD 2002, has many LBD symptoms > > > > I have a few questions and would like everyone's opinion. > > My mom is the main caregiver to my dad, we go over their house quite a bit, myself, sister and brother., but it still is my mom that is the main caregiver. She doesn't like to ask for help (she feels she is inconvieniencing us, we have our own life etc) she did finally get some help through VA. She gets respite and someone to come in and bath him. But the problem is it seems like when my mom gets out of the house my dad gets upsets and I swear he retaliates in some way. Last time she went out he pee'd all over the hallway just outside the bathroom. Last night she went to the movies and dinner and he left the water on all night in the kitchen sink and it flooded the kitchen. When you ask him why he did it, he tells you it wasn't him. THis morning after the incident with the kitchen my mom called my brother and he came over with my brother in law to fix it and my dad was agitated and wanted to know why all these people were there and he was > leaving. When he tried to leave my mom tried to stop him and he acted like he was going to hit her. My brother in law jumped in front of her and he said he was going to hit him. > > My mom feels these things have gotten worse since she started having these respite care workers come in. I know this is taking a toll on my mom and I am not sure what to do. > > Has anyone else had this problem with their loved one. When you go out they get angry at you? When she comes home you can watch him and see that he is pouting. > > Also a question to the caregiver ... Do you feel like you have to hold on as long as you can taking care of your husband or wife because you feel like you are letting your kids down, or that it might upset them. > > Just wondering if this is what my mom is doing. I know I should talk to her about this and asure her that she needs to do what she needs to do. > > Kathy > > Quote Link to comment Share on other sites More sharing options...
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