Guest guest Posted October 13, 2011 Report Share Posted October 13, 2011 I am new to the group. I've been on the LBDA forum, but came here because I'm looking for more. My mom is in the late to mid-late stage of LBD with Parkinsonism and Alzheimer's. We moved her to an SNF a year ago. I think that sometimes we forget about how this dementia fluctuates. Mom can't speak, either. Oh, sometimes she gets a word out - sometimes even part of a sentence. But it only frustrates her more that she can't make herself understood. When someone can't express herself, and her ability with ADLs seems to be gone (but comes back without notice), it is easy to forget, or not be aware of just how much she does understand. I believe that there are times when our loved ones are very much aware of what is happening and how much they have lost. I once tried to explain to Mom who I was and I know she pictured me at 5 years old. I'm 58. What a shock for her! And then for her to realize that so much of her life is missing. Mom cries a lot. She cries out of sadness, fear, frustration over not being able to tell us what she needs or what hurts, and, of course, depression. I know she'd like to leave this life, but no longer has the ability to do anything about it. She has to trust her daughters, who are strangers to her. I'd be constantly crying, myself, in her position. I don't think there is anything we can do to make things better. I had to just leave Mom last night, crying herself to sleep. Sometimes I don't think I can bear it, but I know I have no choice - not without abandoning Mom and I would never do that. I'm slowly learning to just let her cry. Maybe there is some relief for her in her tears. I know it's no solution, and all we are able to do is to try to endure it. But I also think that the tears are valuable as an outlet for Mom. Kind of like a pressure valve. Thank goodness there are places where we can share our own frustration. > > Do Lewy Body Patients do a lot of crying? I have not been on line for > a while, it is so busy trying to keep up with working, helping at the > Nursing Home where Dad is, and keeping up at home, etc. I know I > could keep going but know you all are going through the same thing. > They told me back in June, my Dad had LBD, and he would only live 3 to > 6 months. Last week was the start of the fifth month. He seems to > spend a lot of time crying. Tonight at the NH that's all he did, and > when I left all I did was cry. I understand LBD is a roller coaster > ride, dealing with Dad since 2002 I truly can say I understand why > they call it a roller coaster ride. All the ups and downs, one minute > to the next can be different. It is truly hard to understand. I just > wonder if any one else was dealing with the crying stage? Thanks for > your help. I wish every care giver the best in taking care of their > love one. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2011 Report Share Posted October 13, 2011 Judy, Please don't take for granted that your Mom doesn't understand just because she can't do some things. Mom could understand right up to the end if I asked the questions she could just respond with a yes or no. She did know wha t was happening. And all the things you are telling her are important. I am sure she appreciates hearing you love her and know she loved you. Hugs, Donna R Crying  Hello All I had a report today from my moms health care aid that for the first time in 2 yrs today my mother who is on home hospice care started crying! out of the blue - for no apparent reason ! It broke my heart! My mother is completely mute and cognitively gone - totally dependent on 24/7 care for all her ADLs. Doesn't recognize us! We feel relief - perhaps she is unaware of what's happening! Over the last months I talk to her as if she could still understand - I tell her things like - the parkinsons ( not LBD ) has gotten worse - I assure her we are ok and how loved she is - what a wonderful mom she is and was ! I often tear up - yet she always stares at the tv and seems not to comprehend ! I wonder if anyone could give me any insight into what would make someone in late stage LBD cry for no apparent reason ?? Thank you! Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2011 Report Share Posted October 13, 2011 Hi Donna Thanks ! Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > > > Judy, > > Please don't take for granted that your Mom doesn't understand just because she can't do some things. Mom could understand right up to the end if I asked the questions she could just respond with a yes or no. She did know wha t was happening. And all the things you are telling her are important. I am sure she appreciates hearing you love her and know she loved you. > > Hugs, > > Donna R > > Crying > > > > Hello All > > I had a report today from my moms health care aid that for the first time in 2 yrs today my mother who is on home hospice care started crying! out of the blue - for no apparent reason ! It broke my heart! > > My mother is completely mute and cognitively gone - totally dependent on 24/7 care for all her ADLs. Doesn't recognize us! > > We feel relief - perhaps she is unaware of what's happening! > > Over the last months I talk to her as if she could still understand - I tell her things like - the parkinsons ( not LBD ) has gotten worse - I assure her we are ok and how loved she is - what a wonderful mom she is and was ! I often tear up - yet she always stares at the tv and seems not to comprehend ! > > I wonder if anyone could give me any insight into what would make someone in late stage LBD cry for no apparent reason ?? > > Thank you! > > Judy R. Strauss LMSW PhD > > Lead Faculty > University of Phoenix > > Jersey City Campus > 100 Town Square Place > |Jersey City, NJ 07310 > Cell- > Email- Jrstr@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2011 Report Share Posted October 13, 2011 Thanks - I like your analogy of a pressure valve and the tears! Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > I am new to the group. I've been on the LBDA forum, but came here because I'm looking for more. My mom is in the late to mid-late stage of LBD with Parkinsonism and Alzheimer's. We moved her to an SNF a year ago. > > I think that sometimes we forget about how this dementia fluctuates. Mom can't speak, either. Oh, sometimes she gets a word out - sometimes even part of a sentence. But it only frustrates her more that she can't make herself understood. When someone can't express herself, and her ability with ADLs seems to be gone (but comes back without notice), it is easy to forget, or not be aware of just how much she does understand. I believe that there are times when our loved ones are very much aware of what is happening and how much they have lost. I once tried to explain to Mom who I was and I know she pictured me at 5 years old. I'm 58. What a shock for her! And then for her to realize that so much of her life is missing. > > Mom cries a lot. She cries out of sadness, fear, frustration over not being able to tell us what she needs or what hurts, and, of course, depression. I know she'd like to leave this life, but no longer has the ability to do anything about it. She has to trust her daughters, who are strangers to her. I'd be constantly crying, myself, in her position. > > I don't think there is anything we can do to make things better. I had to just leave Mom last night, crying herself to sleep. Sometimes I don't think I can bear it, but I know I have no choice - not without abandoning Mom and I would never do that. I'm slowly learning to just let her cry. Maybe there is some relief for her in her tears. > > I know it's no solution, and all we are able to do is to try to endure it. But I also think that the tears are valuable as an outlet for Mom. Kind of like a pressure valve. Thank goodness there are places where we can share our own frustration. > > > > > > Do Lewy Body Patients do a lot of crying? I have not been on line for > > a while, it is so busy trying to keep up with working, helping at the > > Nursing Home where Dad is, and keeping up at home, etc. I know I > > could keep going but know you all are going through the same thing. > > They told me back in June, my Dad had LBD, and he would only live 3 to > > 6 months. Last week was the start of the fifth month. He seems to > > spend a lot of time crying. Tonight at the NH that's all he did, and > > when I left all I did was cry. I understand LBD is a roller coaster > > ride, dealing with Dad since 2002 I truly can say I understand why > > they call it a roller coaster ride. All the ups and downs, one minute > > to the next can be different. It is truly hard to understand. I just > > wonder if any one else was dealing with the crying stage? Thanks for > > your help. I wish every care giver the best in taking care of their > > love one. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2011 Report Share Posted October 13, 2011 Kathy, In general, antidepressants are very effective at reducing or ending the crying. And, if she's in a dementia care facility, hopefully the staff has been trained to address residents' fear. Robin > .... > Mom cries a lot. She cries out of sadness, fear, frustration over not being able to tell us what she needs or what hurts, and, of course, depression. I know she'd like to leave this life, but no longer has the ability to do anything about it. She has to trust her daughters, who are strangers to her. I'd be constantly crying, myself, in her position. > > I don't think there is anything we can do to make things better..... Quote Link to comment Share on other sites More sharing options...
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