Guest guest Posted November 18, 2011 Report Share Posted November 18, 2011 My mother was diagnosed with LBD about 2 years ago, but had been displaying symptoms for about 2 years before that. She is becoming increasingly confused and anxious and her mobility is seriously limited - she is falling more and more frequently and on discharge from hospital this week moved from dementia care to nursing care. She has been living in a care home since the end of July as my father, who is in his late 80s is also unwell and I have 3 children and a full time job, and I couldn't continue to supervise her worsening condition (she had a carer visiting once a day). I felt, after much inner debate, that a move then, while she was still relatively stable, would be better than a move later, as her condition inevitably worsened, would be better in the long term. My brother, who is currently living abroad, wants to take her out of residential care and look after her himself at her home, where my father still lives. How realistic is this? All my instincts say no, and that I will end up picking up the pieces when it doesn't work out and that she'll end up more distressed having been moved back to the home she loved only to be moved out again at a point when her confusion may be even worse than it is now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2011 Report Share Posted November 18, 2011 You are doing the right thing. And you are taking care of your father by getting the right care for your mother. Your brother's wishes to take care of your mother could be just a lot of bluster. (My cousin was going to do this for our grandmother way back when, but it was all hot air.) I think it is a fairly common reaction from someone who isn't in place to experience what that means. When he really thinks about what is involved - leaving his life abroad and whatever ties he has there and coming home to take care of two parents (not just your mom), he may rethink. If he is really serious about this, encourage him to come for a week or two to visit and really get to know what is involved. He needs to understand the full picture. How is he going to deal with toileting and bathing (assuming your mother will be OK with her son doing this for her)? Is he willing to deal with the even less appetizing needs (cleaning up after accidents, vomiting, eating, etc.)? Is your mother a person who would be comfortable with a man (even if it is her son) doing this for her? There is a difference between a husband doing these things and another man (even a son) doing them. Assuming that she recognizes him and knows who he is to her. Taking your mother out of the care center, and then having to place her back there - if you can get her in again - could be very harmful. Your brother would need to understand that if he is going to do this, he has to thoroughly commit to doing it for the rest of her life - and that things will only go downhill. She won't get better. And having her at home is going to lead your father to try to care for her as much as he can and that will worsen his health. Your brother has to understand that he cannot leave her, even for an hour, even if your father is there, to go visit with friends, run errands, see a movie. He needs to realize that he is literally giving up his own life for as long as your mother lives. A visit of week or two, spending the majority of his time in the care center with her, actually helping or at least witnessing the aides as they care for all of your mom's needs, would be good for him. Most care centers won't allow this, because of liability issues, but see if (assuming he is willing to do this) they will let him try to do the things that they do - especially things like toileting - so that he understands better your mom's condition and what is needed for her care. When he realizes that this is beyond him - beyond any single person - there's a good chance that he will back off. Be sure he understands that it is OK to back off, as long as your mom is still in the care center. But if he still wants to take her out, she becomes his responsibility and he must commit to her care, giving up his own interests and needs, for as long as she lives. If, after all of this, he still wants to take her out, and the whole family believes he will live up to his commitment, then let him. It may just give you a badly needed break. Just remember to say " no " when he wants to go to a meeting or movie. Kathy > ** > > > My mother was diagnosed with LBD about 2 years ago, but had been > displaying > symptoms for about 2 years before that. She is becoming increasingly > confused > and anxious and her mobility is seriously limited - she is falling more > and more > frequently and on discharge from hospital this week moved from dementia > care to > nursing care. > > She has been living in a care home since the end of July as my father, who > is in > his late 80s is also unwell and I have 3 children and a full time job, and > I > couldn't continue to supervise her worsening condition (she had a carer > visiting > once a day). I felt, after much inner debate, that a move then, while she > was > still relatively stable, would be better than a move later, as her > condition > inevitably worsened, would be better in the long term. > > My brother, who is currently living abroad, wants to take her out of > residential > care and look after her himself at her home, where my father still lives. > How > realistic is this? All my instincts say no, and that I will end up > picking up > the pieces when it doesn't work out and that she'll end up more distressed > having been moved back to the home she loved only to be moved out again at > a > point when her confusion may be even worse than it is now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2011 Report Share Posted November 18, 2011 I have to agree, no matter how much a person desires and tries this disease will chew you up and spit you out without enough help and with two parents, both with health issues, one with LBD - I'd say that's a lot of help going to be needed. Who will spell him when he sleeps or goes to the bathroom or goes shopping or has a day off or vacation? (which should be mandatory in my opinion, as we are reaching burnout here). I would suggest that one way he can help now is go to the nursing home and spend time with his mom, get to know how to feed her, how to help her exercise with her, sing, read, play games with her - there is so much he could be doing with her there - instead of all the constant triage and care - that would enrich her life. I would see what ways he could help where she is and help his father where he is and leave the intense care to those who know what they are doing. It is impossible to know - really know - what is involved with caring for a person with this disease until you are there I the thick of it, then it really hits. And if someone has it where they yell all night (my mil) or wander a lot of scream or cry or some behavior issue, then it's really rough - and those things can happen at ANY time in the course of this illness. I hope you can help him find some ways he can feel useful to his mother and helping with her care but protect everyone involved as well. Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Kate Knapp Sent: Friday, November 18, 2011 5:56 AM To: LBDcaregivers Subject: Re: Care at home You are doing the right thing. And you are taking care of your father by getting the right care for your mother. Your brother's wishes to take care of your mother could be just a lot of bluster. (My cousin was going to do this for our grandmother way back when, but it was all hot air.) I think it is a fairly common reaction from someone who isn't in place to experience what that means. When he really thinks about what is involved - leaving his life abroad and whatever ties he has there and coming home to take care of two parents (not just your mom), he may rethink. If he is really serious about this, encourage him to come for a week or two to visit and really get to know what is involved. He needs to understand the full picture. How is he going to deal with toileting and bathing (assuming your mother will be OK with her son doing this for her)? Is he willing to deal with the even less appetizing needs (cleaning up after accidents, vomiting, eating, etc.)? Is your mother a person who would be comfortable with a man (even if it is her son) doing this for her? There is a difference between a husband doing these things and another man (even a son) doing them. Assuming that she recognizes him and knows who he is to her. Taking your mother out of the care center, and then having to place her back there - if you can get her in again - could be very harmful. Your brother would need to understand that if he is going to do this, he has to thoroughly commit to doing it for the rest of her life - and that things will only go downhill. She won't get better. And having her at home is going to lead your father to try to care for her as much as he can and that will worsen his health. Your brother has to understand that he cannot leave her, even for an hour, even if your father is there, to go visit with friends, run errands, see a movie. He needs to realize that he is literally giving up his own life for as long as your mother lives. A visit of week or two, spending the majority of his time in the care center with her, actually helping or at least witnessing the aides as they care for all of your mom's needs, would be good for him. Most care centers won't allow this, because of liability issues, but see if (assuming he is willing to do this) they will let him try to do the things that they do - especially things like toileting - so that he understands better your mom's condition and what is needed for her care. When he realizes that this is beyond him - beyond any single person - there's a good chance that he will back off. Be sure he understands that it is OK to back off, as long as your mom is still in the care center. But if he still wants to take her out, she becomes his responsibility and he must commit to her care, giving up his own interests and needs, for as long as she lives. If, after all of this, he still wants to take her out, and the whole family believes he will live up to his commitment, then let him. It may just give you a badly needed break. Just remember to say " no " when he wants to go to a meeting or movie. Kathy On Fri, Nov 18, 2011 at 2:46 AM, <e_ward@... <mailto:e_ward%40talk21.com> > wrote: > ** > > > My mother was diagnosed with LBD about 2 years ago, but had been > displaying > symptoms for about 2 years before that. She is becoming increasingly > confused > and anxious and her mobility is seriously limited - she is falling more > and more > frequently and on discharge from hospital this week moved from dementia > care to > nursing care. > > She has been living in a care home since the end of July as my father, who > is in > his late 80s is also unwell and I have 3 children and a full time job, and > I > couldn't continue to supervise her worsening condition (she had a carer > visiting > once a day). I felt, after much inner debate, that a move then, while she > was > still relatively stable, would be better than a move later, as her > condition > inevitably worsened, would be better in the long term. > > My brother, who is currently living abroad, wants to take her out of > residential > care and look after her himself at her home, where my father still lives. > How > realistic is this? All my instincts say no, and that I will end up > picking up > the pieces when it doesn't work out and that she'll end up more distressed > having been moved back to the home she loved only to be moved out again at > a > point when her confusion may be even worse than it is now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2011 Report Share Posted November 20, 2011 I think you are right. And it won't be easy to correct if he decides he doesn't want to do it. Stick with your own beliefs. It doesn't sound like he has been available up until now! Good luck! Hugs, Donna R Care at home  My mother was diagnosed with LBD about 2 years ago, but had been displaying symptoms for about 2 years before that. She is becoming increasingly confused and anxious and her mobility is seriously limited - she is falling more and more frequently and on discharge from hospital this week moved from dementia care to nursing care. She has been living in a care home since the end of July as my father, who is in his late 80s is also unwell and I have 3 children and a full time job, and I couldn't continue to supervise her worsening condition (she had a carer visiting once a day). I felt, after much inner debate, that a move then, while she was still relatively stable, would be better than a move later, as her condition inevitably worsened, would be better in the long term. My brother, who is currently living abroad, wants to take her out of residential care and look after her himself at her home, where my father still lives. How realistic is this? All my instincts say no, and that I will end up picking up the pieces when it doesn't work out and that she'll end up more distressed having been moved back to the home she loved only to be moved out again at a point when her confusion may be even worse than it is now. Quote Link to comment Share on other sites More sharing options...
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