Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Hi , It's not awful to feel that way - you probably do need a break. This is a tough emotional roller coaster we ride. Hang in there; we are all in the same boat. Sending you hugs from NY, Helene > > I guess I'm just tired and my nerves are on edge, but I need suggestions. Now when I visit my sister, which is almost every day during lunch and after work, she is constantly telling/demanding that we leave and go to her house. I try to take her to her room and she refuses to go in. I know that she is wanting to go home, but that's not possible now. The nurses at the assisted living facility says she does fine, then when her son or I come in she starts getting agitated about wanting to leave. I guess she thinks we are her way home. She gets very verbally abusive. I've tried everything, but last night I was in tears, and my chest was beginning to tighten, which could not be a good thing. I explained to her, in a calm manner, that I was trying to do my best at helping her in any way that I could, but I was going to have to go home if she continued to talk to me that way. She seemed is calm down a little, but I could tell she was upset with me when the sitter came and I went home. Is it awful that I think I need a break? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 IMHO, and with very little personal experience, I think you're visiting too often. Twice a day?! Give yourself a little breathing space - and for your sister, too, since it sounds like your visits " wind her up " which can't be good for her. It is not awful. It is logical that you and she need a break. Barbara > > > I guess I'm just tired and my nerves are on edge, but I need suggestions. > Now when I visit my sister, which is almost every day during lunch and after > work, she is constantly telling/demanding that we leave and go to her house. > I try to take her to her room and she refuses to go in. I know that she is > wanting to go home, but that's not possible now. The nurses at the assisted > living facility says she does fine, then when her son or I come in she > starts getting agitated about wanting to leave. I guess she thinks we are > her way home. She gets very verbally abusive. I've tried everything, but > last night I was in tears, and my chest was beginning to tighten, which > could not be a good thing. I explained to her, in a calm manner, that I was > trying to do my best at helping her in any way that I could, but I was going > to have to go home if she continued to talk to me that way. She seemed is > calm down a little, but I could tell she was upset with me when the sitter > came and I went home. Is it awful that I think I need a break? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 I think the difference is that you and Don were married - you were one in heart and soul and in every way that you could be, and his separation from you was horrible for you both. Any other relationship just isn't the same, such as a mother and daughter or sister and sister or whatever. I know that if my dear wonderful love and husband Pete and I were to be separated we each would probably fight it with all that we had... Praying for balm to your loving heart... -- His, Sherry daughter/guardian of , dx 4/09 with LBD, living in a nearby NH > > Hi dear Sherry, > > I am glad that week off helped. It never helped Don. I took as much as two > weeks off and he was worse than ever. > > All any of us can do is throw our experiences out there, and hope some of > it helps > someone else. I am sure this experience you had with your Mom has helped > somewhere. > > Nothing helped my Don. He was a case all unto himself. I felt as if I was > nearly a basket case at times, and even had his Doctor test me. The doctor > said I was near perfect. Well, that reinforced Don's will to be with me. He > just couldn't get it through his head that my body hurt so bad from caring > for him, that I was on the verge of being hospitalized. > > I hope everyone can use what help is given. Some things work and other > things don't. But, we all learn that sooner or later. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 ,  My Mom has been a care center with LBD, in their memory care unit since Nov. 2009, and she still begs me to take her home or to get a place for her to live every time I see her which is usually at least twice a week or more. In her mind she thinks she can take care of herself and thinks she doesn't need any help.  I live an hour away from where she is so during the winter months it is harder for me to get there more often. I did have eye surgery in Jan of this year & was unable to drive to for 2 wks after the surgery, so did not see her during that time. I was hoping that the time away from her would help her to realize that where she lives now is truly her home. But she still says she does not have a home & that, that place is not her home.  She is always glad to see me, but within a few minutes after i get there she is asking me to take her home. It's difficult & I try to distract her but it's not always easy. She is 94 & I am 67 &  it got to a point where my health was suffering, and I could no longer take care of her at home due all the falls she was having & due to the fact that it was almost impossible to get her into our bathroom in her wheelchair, & due to my health, I was hospitalized twice in two months time, due to severe diverticulitis, before she went into the care center. I will be moving just a few miles away from where she is next month & will also be closer to my daughter at that time, but I still feel awful that I can't take care of her in my home. My brother lives in CO & I live in OH & had no other family members close by to help me. For a long time we had a caregiver for her while I workded but after I retired & she was running out of money we could no longer afford to pay for her caregivers. She is on Medicaid now, & in a wonderful care facility where she receives wonderful care, but it still hurts me when she asks me to take her home. She doesen't know where home is anymore, she just doesn't want to stay in the care center. So it is always difficult, and I deal with it the best I can by telling myself that she is in a place where she receives wonderful care and is safe & only falls if she tries to transfer herselt by herself which she shouldn't do but does try to do on rare occasions. No matter where our loved ones are whether or not in our home or in a care center this is just not an easy journey. All we can do is love them and try to provide the best care possible for them where ever that care happens to be. I wish you the best on this difficult journey. > I guess I'm just tired and my nerves are on edge, but I need suggestions. Now when I visit my sister, which is almost every day during lunch and after work, she is constantly telling/demanding that we leave and go to her house. I try to take her to her room and she refuses to go in. I know that she is wanting to go home, but that's not possible now. The nurses at the assisted living facility says she does fine, then when her son or I come in she starts getting agitated about wanting to leave. I guess she thinks we are her way home. She gets very verbally abusive. I've tried everything, but last night I was in tears, and my chest was beginning to tighten, which could not be a good thing. I explained to her, in a calm manner, that I was trying to do my best at helping her in any way that I could, but I was going to have to go home if she continued to talk to me that way. She seemed is calm down a little, but I could tell she was upset with me when the sitter came and I went home. Is it awful that I think I need a break? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 That is a tough one in a facility setting. Mom used to tell me that she wanted to go home, and we were in her home. One day I just decided to put her in the car and we went for a short ride and then came back home. Voila...that was solved. We took many drives home and I couldn't change the route that we took because she would tell me that I was supposed to turn here or there, etc. In the later stages of this disease, I think that wanting to go home is more focused towards leaving this life and going on to eternal life. Maybe when your sister asks you to go home, just start talking about her home and something that happened there and then spin off to someone that was there at that certain event and slowly change the subject a little at a time. Usually after a few minutes like this, her mind will be totally off of going home. Good luck, Joan > > I guess I'm just tired and my nerves are on edge, but I need suggestions. Now when I visit my sister, which is almost every day during lunch and after work, she is constantly telling/demanding that we leave and go to her house. I try to take her to her room and she refuses to go in. I know that she is wanting to go home, but that's not possible now. The nurses at the assisted living facility says she does fine, then when her son or I come in she starts getting agitated about wanting to leave. I guess she thinks we are her way home. She gets very verbally abusive. I've tried everything, but last night I was in tears, and my chest was beginning to tighten, which could not be a good thing. I explained to her, in a calm manner, that I was trying to do my best at helping her in any way that I could, but I was going to have to go home if she continued to talk to me that way. She seemed is calm down a little, but I could tell she was upset with me when the sitter came and I went home. Is it awful that I think I need a break? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Although my mom was not in the later stages of LBD, she understood that I was hurting and had the spine injuries. As she began to become weaker and needed assistance in standing or leading her to the bathroom, she was always aware. When she would need help standing up, I would stand in front of her with my hands out...she would say that she didn't wnat to hurt me and then I told her that I am just puttting my hands out so that she could pull herself up. That worked so well...she continued doing that, and then when my brother and sister would stay with her so that I could go to the doctor or to work, they would pull her up...in a short week, she forgot how to pull herself up. But...everyone is different, and our experiences are different. You just have to do what you can. Althought I was dead set in keeping Mom in her home, I really don't know what would have happened if she had not passed away in the mild/moderate stage. God bless all of you! Joan > > > > Hi dear Sherry, > > I am glad that week off helped. It never helped Don. I took as much as two > weeks off and he was worse than ever. > > All any of us can do is throw our experiences out there, and hope some of > it helps > someone else. I am sure this experience you had with your Mom has helped > somewhere. > > Nothing helped my Don. He was a case all unto himself. I felt as if I was > nearly a basket case at times, and even had his Doctor test me. The doctor > said I was near perfect. Well, that reinforced Don's will to be with me. He > just couldn't get it through his head that my body hurt so bad from caring > for him, that I was on the verge of being hospitalized. > > I hope everyone can use what help is given. Some things work and other > things don't. But, we all learn that sooner or later. > > Love a lot, > Imogene > > > In a message dated 2/15/2011 11:14:17 A.M. Central Standard Time, > upnorth@... writes: > > We went through this with my mom when she was first in the nursing home, > nearly 2 years ago. The best advice I got was from their social worker, > who told me that it is ok to take time off. I was in tears after every > visit, and was just enabling her to treat me badly, putting myself in > the line of fire so to speak, and I didn't HAVE to do that. She was > definitely capable of learning that wasn't OK. And sure enough, I took a > week off and when I went back in her attitude was completely different. > > And perhaps more importantly, by allowing her to continue to fight being > there, I wasn't allowing her to adjust - which is essential for her > future well-being of course. During that week she came to terms with it > as she wasn't continually fighting it (by fighting me). It was a huge > turning point and she was so much more content afterward. > > By working with the social worker, they used that week to really work > with her on forming relationships and getting involved, and it really > made all the difference for her, and ended her constant frustration and > rage (although it occasionally pops up even now, always after some sort > of event she didn't like, such as a new roommate, or something similar). > > > -- > His, > Sherry > daughter/guardian of , dx 4/09 with LBD, living in a nearby NH > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Thank you Dear Sherry, Love a lot, Imogene In a message dated 2/15/2011 3:49:17 P.M. Central Standard Time, upnorth@... writes: I think the difference is that you and Don were married - you were one in heart and soul and in every way that you could be, and his separation from you was horrible for you both. Any other relationship just isn't the same, such as a mother and daughter or sister and sister or whatever. I know that if my dear wonderful love and husband Pete and I were to be separated we each would probably fight it with all that we had... Praying for balm to your loving heart... -- His, Sherry daughter/guardian of , dx 4/09 with LBD, living in a nearby NH Quote Link to comment Share on other sites More sharing options...
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