Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 I mean this from the bottom of my heart. Any good that is in me was put there by her. She has had a VERY hard life. I won't go into the details here because its not the place. My only disappointment was that when Dad died (and I did love him) I hoped she'd finally have some peace for another ten years or more. It was not meant to be. I try not to dwell on it. I think of two Bible verses whenever I start to thing negatively. The first is " Count it all joy. " 1:2 I believe that admonition was given to us to help us. When we start counting it as joy even if we don't feel it and we continue to do it sooner or later, we feel joyful. LOL I know you all think I'm Pollyanna. LOL The other verse is Romans 8:28 " ALL things work together for good to those who know the Lord. " When my daughter developed kidney cancer at the age of 2 this is the verse that got me through it. On those days when I couldn't even begin to count it as joy, knowing in my heart that good would come of it got me through the day. Gladys -- Gladys: Who was that woman? Gladys, Wow, that was wonderfully, lovingly written!! Your mom is blessed, and it is obvious she is a very important part of who you are today. I pray for each of you, and I pray that if I come to that point, I will be surrounded by the type of love your mother has. It brought tears, of joy, of laughter, of sadness. Bye for now, Lucille Gladys Stefany wrote: I closed out 2007 by arriving at my mother's house at around 10:00 PM. I've been to that house almost daily for the past two years and yet, somehow, it didn't seem like my mother's house. All of my adult life I have referred to my Mom as " Mrs. Felix Unger " ( " Odd Couple " ). There has never been a speck of dust to be found in her house and you could always, literally, eat off her floors. In all my life (53 years) I've never seen anything out of place and she has NEVER gone to bed without every dish washed and neatly put away. So, perhaps it was the dirty TV dinner tray with the fork still in it on the dining room table that made the house seem strange, or the large plastic trash bag spilling onto the kitchen floor, or the shredded pieces of paper towels on the dark green countertop, or the clothes haphazardly dumped on her closet shelf? This couldn't be my mother's house. I went into the living room to find this teeny tiny frail little " wiffet " of a woman fully dressed (in the same clothes she had on for about 36 hours) and sound asleep on her couch. The sound of her breathing filled the room as she has a horrible cold and can't take anything for it due to the interaction of cold medicines with all the other medications she is taking for her LBD. Every light was on and the TV was blaring away. This woman couldn't be my mother. My mother would never be able to sleep until everything was in place, she'd have had a shower and put on a clean nightgown, turned out the lights, locked all the doors, etc. I IM'd my hubby to see if he thought I should just let this woman be or move her to her bed. We decided to just let her be. I turned off the lights and the TV and crawled onto the air mattress my sister, my daughter, and I sleep on when we take turns sleeping at Mom's house. I tossed and turned for about two hours and finally drifted off to sleep. At around 2:00 in the morning, the first face I saw in 2008 turned out to be that same little wiffet of a woman. She turned on the ceiling light and called my name. She seemed to be very agitated. I asked what was wrong. She was rather upset because she woke up and decided to move to her bed but there was a man and a little boy in the bed and they refused to move! I got up and went into her room and yelled at the man and the boy. I told them that unless they were going to pay rent, they needed to move out. The tiny lady laughed, smiled at me, and said " They are on the couch now. Thank you " I helped her into her nightgown (she has trouble telling which is the neck hole and which are the arm holes) and I literally tucked her into bed, kissed her goodnight, and told her I was going to shut the door so that the man and the boy would leave her alone and that I would be sure they didn't bother her for the rest of the night. I returned to the air mattress for another couple hours of tossing and turning. I was sure that it would only be 2 or 3 hours before the teeny tiny woman returned. This woman couldn't be my mother. My mother is not a frail teeny tiny woman who shuffles slowly when she walks and frequently has to catch herself from falling. My mother is athletic. She always has been. She has exercised faithfully and watched her diet every day of her life. At 70, she still walked several miles a day biked several miles a day, and swam for an hour every day. This women is only 6 years older than my mother and she can't even make her bed because the thin bedspread is too heavy for her to handle. This woman never walks alone and even then, after only a short walk sleeps for hours. This woman spends most of her day sleeping. This woman couldn't be my mother. My mother would NEVER allow us to help her dress, handle her medications, or help her make her bed. My mother is far too proud to do that. This woman couldn't be my mother. This woman can't figure out how to enter anything in her check book nor how to read a calendar. My mother kept the books for an entire school system by hand before computers and calculators. This woman couldn't be my mother. Then, she came back to the door and called my name softly. She said " You're breathing doesn't sound good. I'm worried about you. " (I have a sinus infection.) Then I knew that this little woman is, indeed, my mother. She is a much smaller, sweeter, funnier, warmer version of my mother, but she is my mother. She still worries about her children (all three of them). She is still the woman who gave birth to me, nursed me through the mumps, the chicken pox, my hospitalization with the measles, changed my poopie diapers with a smile, and cleaned up my vomit without complaint. She is still the woman who taught me how to ride a bike, how to ice skate, how to spell, and how to reach out to others in need. She is still the woman who bandaged countless skinned knees, worked a full time job, drove my two sisters and I to Brownie and Girl Scout meetings, and to music lessons (after fighting with my father to get us those lessons). She is still the woman who worked all day and stayed up late at night ironing our dresses (yes, we grew up in the dark ages when you weren't allowed to wear pants to public school and no " permapress " had not yet been invented), kept an immaculate house, and helped us with our homework. She is still the same woman who went to more elementary school band concerts than anyone should ever be subjected to. She is the same woman who fought with our father so that we could go on dates and so that we could go to college. She is still the woman who was there the day I had surgery for what we thought was a tubal pregnancy and is now my 25 year old daughter. She is still the same woman who took countless days off from work to drive into New York City with me when my then two year old needed chemotherapy. (Mom's routine was to smile at me and at Ruthie all day long and then, when she was alone, give into the nausea and the headache that came from the emotional days of treatment. ) She is still the same woman who strove meticulously over the years to treat each and every grandchild equally (it didn't matter to her if they were adopted or biological). If one child got a dollar in a Halloween card, they all got a dollar in a Halloween card. She is still the same woman who had brain surgery without telling any of her children because she didn't want to worry them. She is still the same woman who has maintained all of her adult life that she never wanted to be a burden to any of us. Though LBD has taken much of her away, I realized in the early hours of the new year, that her last wish has come true. She is NOT a burden to any of us. She is a blessing to us. Caring for her is not a burden. It is a privilege. Was my mother the perfect mother? No There is no such thing. Were there times in our past when we didn't get along and said or did things that hurt each other? Are we human? However, when it comes to " keeping score " (which some of my relatives seem to need to do) we have to be sure to look at the whole tally. The things I've listed here are but a small percentage of the many blessings my mother has brought into my life. I don t feel burdened and I know my sister and my daughter do not feel burdened either. This little woman is warm and affectionate, appreciative, loving, and funny. This phase of her life is, in some ways, the one I cherish most because one of the nice things about LBD is that the patients can't hide their emotions anymore behind the walls of scars live builds in all of us. They are who they are in their purest form. To be able to give back to her just a portion of what she has given to me is truly a blessing. My father died very suddenly and unexpectedly and I did not have the opportunity I am having now to just be with my mother and enjoy each other's company. On those days when she is with it, we have conversations that are very meaningful and are unlike any we have ever had before. She still loves all of her children and suffers with a terribly broken heart due to her estrangement from one of them. Even in her delirium, she will sometimes look up, mention her name, and say " I guess I'll never see her again..... " and a sadness that I can only imagine washes over her face. She would still do anything for her grandchildren and still finds her greatest joy in life in the faces of her four GORGEOUS great-grandchildren (none are mine...... sigh....... but I enjoy them just the same!) Burdened? NO! Blessed? YES! I feel sorry for those who have chosen to keep score of only the negatives and are missing out on the opportunity to enjoy my mother in this precious time of her life. I am so happy that my score keeping is honest so that I can see how much the blessings have outweighed the problems we have had. We must cherish these times because we know the course this disease will take and how it will probably end. I wish you all the happiest and healthiest of new years and I pray that God will make clear the blessings in a life that can be very difficult at times. I thank all the LBD patients on this list for all you have taught me and I thank the caregivers on the list for all the great information and all the support. I thank God for giving me the opportunity to spend this time with my Mom. It is my prayer that all who know her will put their petty issues aside and enjoy the blessings for they are fleeting all too quickly away. She is my mother and I am VERY proud of the grace (no pun intended) and dignity with which she is accepting and handing a disease which has always been the biggest fear of her life. Happy New Year! Gladys Stefany VERY proud daughter of Grace C (Lewy Bodies Dementia patient) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 Thank you for your additional post. One of the great things about the internet is the ability to get to know people we could not possibly have met in person. Bye for now, Gloria Gladys Stefany wrote: I mean this from the bottom of my heart. Any good that is in me was put there by her. She has had a VERY hard life. I won't go into the details here because its not the place. My only disappointment was that when Dad died (and I did love him) I hoped she'd finally have some peace for another ten years or more. It was not meant to be. I try not to dwell on it. I think of two Bible verses whenever I start to thing negatively. The first is " Count it all joy. " 1:2 I believe that admonition was given to us to help us. When we start counting it as joy even if we don't feel it and we continue to do it sooner or later, we feel joyful. LOL I know you all think I'm Pollyanna. LOL The other verse is Romans 8:28 " ALL things work together for good to those who know the Lord. " When my daughter developed kidney cancer at the age of 2 this is the verse that got me through it. On those days when I couldn't even begin to count it as joy, knowing in my heart that good would come of it got me through the day. Gladys -- Gladys: Who was that woman? Gladys, Wow, that was wonderfully, lovingly written!! Your mom is blessed, and it is obvious she is a very important part of who you are today. I pray for each of you, and I pray that if I come to that point, I will be surrounded by the type of love your mother has. It brought tears, of joy, of laughter, of sadness. Bye for now, Lucille Gladys Stefany wrote: I closed out 2007 by arriving at my mother's house at around 10:00 PM. I've been to that house almost daily for the past two years and yet, somehow, it didn't seem like my mother's house. All of my adult life I have referred to my Mom as " Mrs. Felix Unger " ( " Odd Couple " ). There has never been a speck of dust to be found in her house and you could always, literally, eat off her floors. In all my life (53 years) I've never seen anything out of place and she has NEVER gone to bed without every dish washed and neatly put away. So, perhaps it was the dirty TV dinner tray with the fork still in it on the dining room table that made the house seem strange, or the large plastic trash bag spilling onto the kitchen floor, or the shredded pieces of paper towels on the dark green countertop, or the clothes haphazardly dumped on her closet shelf? This couldn't be my mother's house. I went into the living room to find this teeny tiny frail little " wiffet " of a woman fully dressed (in the same clothes she had on for about 36 hours) and sound asleep on her couch. The sound of her breathing filled the room as she has a horrible cold and can't take anything for it due to the interaction of cold medicines with all the other medications she is taking for her LBD. Every light was on and the TV was blaring away. This woman couldn't be my mother. My mother would never be able to sleep until everything was in place, she'd have had a shower and put on a clean nightgown, turned out the lights, locked all the doors, etc. I IM'd my hubby to see if he thought I should just let this woman be or move her to her bed. We decided to just let her be. I turned off the lights and the TV and crawled onto the air mattress my sister, my daughter, and I sleep on when we take turns sleeping at Mom's house. I tossed and turned for about two hours and finally drifted off to sleep. At around 2:00 in the morning, the first face I saw in 2008 turned out to be that same little wiffet of a woman. She turned on the ceiling light and called my name. She seemed to be very agitated. I asked what was wrong. She was rather upset because she woke up and decided to move to her bed but there was a man and a little boy in the bed and they refused to move! I got up and went into her room and yelled at the man and the boy. I told them that unless they were going to pay rent, they needed to move out. The tiny lady laughed, smiled at me, and said " They are on the couch now. Thank you " I helped her into her nightgown (she has trouble telling which is the neck hole and which are the arm holes) and I literally tucked her into bed, kissed her goodnight, and told her I was going to shut the door so that the man and the boy would leave her alone and that I would be sure they didn't bother her for the rest of the night. I returned to the air mattress for another couple hours of tossing and turning. I was sure that it would only be 2 or 3 hours before the teeny tiny woman returned. This woman couldn't be my mother. My mother is not a frail teeny tiny woman who shuffles slowly when she walks and frequently has to catch herself from falling. My mother is athletic. She always has been. She has exercised faithfully and watched her diet every day of her life. At 70, she still walked several miles a day biked several miles a day, and swam for an hour every day. This women is only 6 years older than my mother and she can't even make her bed because the thin bedspread is too heavy for her to handle. This woman never walks alone and even then, after only a short walk sleeps for hours. This woman spends most of her day sleeping. This woman couldn't be my mother. My mother would NEVER allow us to help her dress, handle her medications, or help her make her bed. My mother is far too proud to do that. This woman couldn't be my mother. This woman can't figure out how to enter anything in her check book nor how to read a calendar. My mother kept the books for an entire school system by hand before computers and calculators. This woman couldn't be my mother. Then, she came back to the door and called my name softly. She said " You're breathing doesn't sound good. I'm worried about you. " (I have a sinus infection.) Then I knew that this little woman is, indeed, my mother. She is a much smaller, sweeter, funnier, warmer version of my mother, but she is my mother. She still worries about her children (all three of them). She is still the woman who gave birth to me, nursed me through the mumps, the chicken pox, my hospitalization with the measles, changed my poopie diapers with a smile, and cleaned up my vomit without complaint. She is still the woman who taught me how to ride a bike, how to ice skate, how to spell, and how to reach out to others in need. She is still the woman who bandaged countless skinned knees, worked a full time job, drove my two sisters and I to Brownie and Girl Scout meetings, and to music lessons (after fighting with my father to get us those lessons). She is still the woman who worked all day and stayed up late at night ironing our dresses (yes, we grew up in the dark ages when you weren't allowed to wear pants to public school and no " permapress " had not yet been invented), kept an immaculate house, and helped us with our homework. She is still the same woman who went to more elementary school band concerts than anyone should ever be subjected to. She is the same woman who fought with our father so that we could go on dates and so that we could go to college. She is still the woman who was there the day I had surgery for what we thought was a tubal pregnancy and is now my 25 year old daughter. She is still the same woman who took countless days off from work to drive into New York City with me when my then two year old needed chemotherapy. (Mom's routine was to smile at me and at Ruthie all day long and then, when she was alone, give into the nausea and the headache that came from the emotional days of treatment. ) She is still the same woman who strove meticulously over the years to treat each and every grandchild equally (it didn't matter to her if they were adopted or biological). If one child got a dollar in a Halloween card, they all got a dollar in a Halloween card. She is still the same woman who had brain surgery without telling any of her children because she didn't want to worry them. She is still the same woman who has maintained all of her adult life that she never wanted to be a burden to any of us. Though LBD has taken much of her away, I realized in the early hours of the new year, that her last wish has come true. She is NOT a burden to any of us. She is a blessing to us. Caring for her is not a burden. It is a privilege. Was my mother the perfect mother? No There is no such thing. Were there times in our past when we didn't get along and said or did things that hurt each other? Are we human? However, when it comes to " keeping score " (which some of my relatives seem to need to do) we have to be sure to look at the whole tally. The things I've listed here are but a small percentage of the many blessings my mother has brought into my life. I don t feel burdened and I know my sister and my daughter do not feel burdened either. This little woman is warm and affectionate, appreciative, loving, and funny. This phase of her life is, in some ways, the one I cherish most because one of the nice things about LBD is that the patients can't hide their emotions anymore behind the walls of scars live builds in all of us. They are who they are in their purest form. To be able to give back to her just a portion of what she has given to me is truly a blessing. My father died very suddenly and unexpectedly and I did not have the opportunity I am having now to just be with my mother and enjoy each other's company. On those days when she is with it, we have conversations that are very meaningful and are unlike any we have ever had before. She still loves all of her children and suffers with a terribly broken heart due to her estrangement from one of them. Even in her delirium, she will sometimes look up, mention her name, and say " I guess I'll never see her again..... " and a sadness that I can only imagine washes over her face. She would still do anything for her grandchildren and still finds her greatest joy in life in the faces of her four GORGEOUS great-grandchildren (none are mine...... sigh....... but I enjoy them just the same!) Burdened? NO! Blessed? YES! I feel sorry for those who have chosen to keep score of only the negatives and are missing out on the opportunity to enjoy my mother in this precious time of her life. I am so happy that my score keeping is honest so that I can see how much the blessings have outweighed the problems we have had. We must cherish these times because we know the course this disease will take and how it will probably end. I wish you all the happiest and healthiest of new years and I pray that God will make clear the blessings in a life that can be very difficult at times. I thank all the LBD patients on this list for all you have taught me and I thank the caregivers on the list for all the great information and all the support. I thank God for giving me the opportunity to spend this time with my Mom. It is my prayer that all who know her will put their petty issues aside and enjoy the blessings for they are fleeting all too quickly away. She is my mother and I am VERY proud of the grace (no pun intended) and dignity with which she is accepting and handing a disease which has always been the biggest fear of her life. Happy New Year! Gladys Stefany VERY proud daughter of Grace C (Lewy Bodies Dementia patient) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 This was absolutely lovely! I identified with your era, and perma press and no pants to school. My own mother was very much like your mother, and I lost her over 30 years ago. I thought all mothers were supposed to be like that, and learning that it is not so was an icredible shock! I poke fun at Millie's situation only to break the tension of the task of having someone's life literally in your hands. Millie was an extremely distant and cold woman who has softened some with her dementia. I know if my husband and his brothers would have had a mother as wonderful as yours, 8 marriages (only three sons) would have been extremely different. Millie was at our house for about 30 minutes and was terrible to her oldest son. He tries to care and be helpful but she just won't let him. Ours is a strange situation in that the boys 54,56,58, want to embrace the cactus, thorns and all, but continally are reduced to mere children in her presence. It is so sad to watch. The lack of nuturing the boys grew up with has turned their hearts, and as much as they would like to be closer, they just can't always rise above a mother who would never check on them when they were sick, and lived by the philosophy that if it is your day to die, you'll die. they are dutiful sons, and I know they try as hard as they can, but I know I will be the primary caregiver to shield my husband from more and more hurt. When Millie gets less able to lash out, they may be able to get closer, but while she still has to bite every time she is with them, they feel powerless. In her house they are still her kids. Millie's husband was the nurturer and he has been gone over 15 years. The boys honor their mother, but they remain shy in embracing her while she still lashes out so venomously. You are certainly blessed, Carol > I closed out 2007 by arriving at my mother's house at around 10:00 PM. I've > been to that house almost daily for the past two years and yet, somehow, it > didn't seem like my mother's house. All of my adult life I have referred to > my Mom as " Mrs. Felix Unger " ( " Odd Couple " ). There has never been a speck > of dust to be found in her house and you could always, literally, eat off > her floors. In all my life (53 years) I've never seen anything out of place > and she has NEVER gone to bed without every dish washed and neatly put away. > So, perhaps it was the dirty TV dinner tray with the fork still in it on > the dining room table that made the house seem strange, or the large plastic > trash bag spilling onto the kitchen floor, or the shredded pieces of paper > towels on the dark green countertop, or the clothes haphazardly dumped on > her closet shelf? This couldn't be my mother's house. > > I went into the living room to find this teeny tiny frail little " wiffet " of > a woman fully dressed (in the same clothes she had on for about 36 hours) > and sound asleep on her couch. The sound of her breathing filled the room > as she has a horrible cold and can't take anything for it due to the > interaction of cold medicines with all the other medications she is taking > for her LBD. Every light was on and the TV was blaring away. This woman > couldn't be my mother. My mother would never be able to sleep until > everything was in place, she'd have had a shower and put on a clean > nightgown, turned out the lights, locked all the doors, etc. I IM'd my > hubby to see if he thought I should just let this woman be or move her to > her bed. We decided to just let her be. I turned off the lights and the TV > and crawled onto the air mattress my sister, my daughter, and I sleep on > when we take turns sleeping at Mom's house. > > I tossed and turned for about two hours and finally drifted off to sleep. > At around 2:00 in the morning, the first face I saw in 2008 turned out to be > that same little wiffet of a woman. She turned on the ceiling light and > called my name. She seemed to be very agitated. I asked what was wrong. > She was rather upset because she woke up and decided to move to her bed but > there was a man and a little boy in the bed and they refused to move! I got > up and went into her room and yelled at the man and the boy. I told them > that unless they were going to pay rent, they needed to move out. The tiny > lady laughed, smiled at me, and said " They are on the couch now. Thank you " > I helped her into her nightgown (she has trouble telling which is the neck > hole and which are the arm holes) and I literally tucked her into bed, > kissed her goodnight, and told her I was going to shut the door so that the > man and the boy would leave her alone and that I would be sure they didn't > bother her for the rest of the night. I returned to the air mattress for > another couple hours of tossing and turning. I was sure that it would only > be 2 or 3 hours before the teeny tiny woman returned. This woman couldn't > be my mother. My mother is not a frail teeny tiny woman who shuffles slowly > when she walks and frequently has to catch herself from falling. My mother > is athletic. She always has been. She has exercised faithfully and watched > her diet every day of her life. At 70, she still walked several miles a day > biked several miles a day, and swam for an hour every day. This women is > only 6 years older than my mother and she can't even make her bed because > the thin bedspread is too heavy for her to handle. This woman never walks > alone and even then, after only a short walk sleeps for hours. This woman > spends most of her day sleeping. This woman couldn't be my mother. My > mother would NEVER allow us to help her dress, handle her medications, or > help her make her bed. My mother is far too proud to do that. This woman > couldn't be my mother. This woman can't figure out how to enter anything in > her check book nor how to read a calendar. My mother kept the books for an > entire school system by hand before computers and calculators. This woman > couldn't be my mother. > > Then, she came back to the door and called my name softly. She said " You're > breathing doesn't sound good. I'm worried about you. " (I have a sinus > infection.) Then I knew that this little woman is, indeed, my mother. She > is a much smaller, sweeter, funnier, warmer version of my mother, but she is > my mother. She still worries about her children (all three of them). She > is still the woman who gave birth to me, nursed me through the mumps, the > chicken pox, my hospitalization with the measles, changed my poopie diapers > with a smile, and cleaned up my vomit without complaint. She is still the > woman who taught me how to ride a bike, how to ice skate, how to spell, and > how to reach out to others in need. She is still the woman who bandaged > countless skinned knees, worked a full time job, drove my two sisters and I > to Brownie and Girl Scout meetings, and to music lessons (after fighting > with my father to get us those lessons). She is still the woman who worked > all day and stayed up late at night ironing our dresses (yes, we grew up in > the dark ages when you weren't allowed to wear pants to public school and no > " permapress " had not yet been invented), kept an immaculate house, and > helped us with our homework. She is still the same woman who went to more > elementary school band concerts than anyone should ever be subjected to. > She is the same woman who fought with our father so that we could go on > dates and so that we could go to college. She is still the woman who was > there the day I had surgery for what we thought was a tubal pregnancy and is > now my 25 year old daughter. She is still the same woman who took countless > days off from work to drive into New York City with me when my then two year > old needed chemotherapy. (Mom's routine was to smile at me and at Ruthie > all day long and then, when she was alone, give into the nausea and the > headache that came from the emotional days of treatment. ) She is still the > same woman who strove meticulously over the years to treat each and every > grandchild equally (it didn't matter to her if they were adopted or > biological). If one child got a dollar in a Halloween card, they all got a > dollar in a Halloween card. She is still the same woman who had brain > surgery without telling any of her children because she didn't want to worry > them. She is still the same woman who has maintained all of her adult life > that she never wanted to be a burden to any of us. > > Though LBD has taken much of her away, I realized in the early hours of the > new year, that her last wish has come true. She is NOT a burden to any of > us. She is a blessing to us. Caring for her is not a burden. It is a > privilege. Was my mother the perfect mother? No There is no such thing. > Were there times in our past when we didn't get along and said or did things > that hurt each other? Are we human? However, when it comes to " keeping > score " (which some of my relatives seem to need to do) we have to be sure to > look at the whole tally. The things I've listed here are but a small > percentage of the many blessings my mother has brought into my life. I don > t feel burdened and I know my sister and my daughter do not feel burdened > either. This little woman is warm and affectionate, appreciative, loving, > and funny. This phase of her life is, in some ways, the one I cherish most > because one of the nice things about LBD is that the patients can't hide > their emotions anymore behind the walls of scars live builds in all of us. > They are who they are in their purest form. To be able to give back to her > just a portion of what she has given to me is truly a blessing. My father > died very suddenly and unexpectedly and I did not have the opportunity I am > having now to just be with my mother and enjoy each other's company. On > those days when she is with it, we have conversations that are very > meaningful and are unlike any we have ever had before. She still loves all > of her children and suffers with a terribly broken heart due to her > estrangement from one of them. Even in her delirium, she will sometimes > look up, mention her name, and say " I guess I'll never see her again..... " > and a sadness that I can only imagine washes over her face. She would still > do anything for her grandchildren and still finds her greatest joy in life > in the faces of her four GORGEOUS great-grandchildren (none are mine...... > sigh....... but I enjoy them just the same!) > > Burdened? NO! Blessed? YES! I feel sorry for those who have chosen to > keep score of only the negatives and are missing out on the opportunity to > enjoy my mother in this precious time of her life. I am so happy that my > score keeping is honest so that I can see how much the blessings have > outweighed the problems we have had. We must cherish these times because we > know the course this disease will take and how it will probably end. > > I wish you all the happiest and healthiest of new years and I pray that God > will make clear the blessings in a life that can be very difficult at times. > I thank all the LBD patients on this list for all you have taught me and I > thank the caregivers on the list for all the great information and all the > support. I thank God for giving me the opportunity to spend this time with > my Mom. It is my prayer that all who know her will put their petty issues > aside and enjoy the blessings for they are fleeting all too quickly away. > > She is my mother and I am VERY proud of the grace (no pun intended) and > dignity with which she is accepting and handing a disease which has always > been the biggest fear of her life. > > Happy New Year! > > Gladys Stefany VERY proud daughter of > Grace C (Lewy Bodies Dementia patient) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 It sounds like your husband and his brothers are wonderful men! (((HUGS))) Gladys -- Re: Gladys: Who was that woman? This was absolutely lovely! I identified with your era, and perma press and no pants to school. My own mother was very much like your mother, and I lost her over 30 years ago. I thought all mothers were supposed to be like that, and learning that it is not so was an icredible shock! I poke fun at Millie's situation only to break the tension of the task of having someone's life literally in your hands. Millie was an extremely distant and cold woman who has softened some with her dementia. I know if my husband and his brothers would have had a mother as wonderful as yours, 8 marriages (only three sons) would have been extremely different. Millie was at our house for about 30 minutes and was terrible to her oldest son. He tries to care and be helpful but she just won't let him. Ours is a strange situation in that the boys 54,56,58, want to embrace the cactus, thorns and all, but continally are reduced to mere children in her presence. It is so sad to watch. The lack of nuturing the boys grew up with has turned their hearts, and as much as they would like to be closer, they just can't always rise above a mother who would never check on them when they were sick, and lived by the philosophy that if it is your day to die, you'll die. they are dutiful sons, and I know they try as hard as they can, but I know I will be the primary caregiver to shield my husband from more and more hurt. When Millie gets less able to lash out, they may be able to get closer, but while she still has to bite every time she is with them, they feel powerless. In her house they are still her kids. Millie's husband was the nurturer and he has been gone over 15 years. The boys honor their mother, but they remain shy in embracing her while she still lashes out so venomously. You are certainly blessed, Carol > I closed out 2007 by arriving at my mother's house at around 10:00 PM. I've > been to that house almost daily for the past two years and yet, somehow, it > didn't seem like my mother's house. All of my adult life I have referred to > my Mom as " Mrs. Felix Unger " ( " Odd Couple " ). There has never been a speck > of dust to be found in her house and you could always, literally, eat off > her floors. In all my life (53 years) I've never seen anything out of place > and she has NEVER gone to bed without every dish washed and neatly put away. > So, perhaps it was the dirty TV dinner tray with the fork still in it on > the dining room table that made the house seem strange, or the large plastic > trash bag spilling onto the kitchen floor, or the shredded pieces of paper > towels on the dark green countertop, or the clothes haphazardly dumped on > her closet shelf? This couldn't be my mother's house. > > I went into the living room to find this teeny tiny frail little " wiffet " of > a woman fully dressed (in the same clothes she had on for about 36 hours) > and sound asleep on her couch. The sound of her breathing filled the room > as she has a horrible cold and can't take anything for it due to the > interaction of cold medicines with all the other medications she is taking > for her LBD. Every light was on and the TV was blaring away. This woman > couldn't be my mother. My mother would never be able to sleep until > everything was in place, she'd have had a shower and put on a clean > nightgown, turned out the lights, locked all the doors, etc. I IM'd my > hubby to see if he thought I should just let this woman be or move her to > her bed. We decided to just let her be. I turned off the lights and the TV > and crawled onto the air mattress my sister, my daughter, and I sleep on > when we take turns sleeping at Mom's house. > > I tossed and turned for about two hours and finally drifted off to sleep. > At around 2:00 in the morning, the first face I saw in 2008 turned out to be > that same little wiffet of a woman. She turned on the ceiling light and > called my name. She seemed to be very agitated. I asked what was wrong. > She was rather upset because she woke up and decided to move to her bed but > there was a man and a little boy in the bed and they refused to move! I got > up and went into her room and yelled at the man and the boy. I told them > that unless they were going to pay rent, they needed to move out. The tiny > lady laughed, smiled at me, and said " They are on the couch now. Thank you " > I helped her into her nightgown (she has trouble telling which is the neck > hole and which are the arm holes) and I literally tucked her into bed, > kissed her goodnight, and told her I was going to shut the door so that the > man and the boy would leave her alone and that I would be sure they didn't > bother her for the rest of the night. I returned to the air mattress for > another couple hours of tossing and turning. I was sure that it would only > be 2 or 3 hours before the teeny tiny woman returned. This woman couldn't > be my mother. My mother is not a frail teeny tiny woman who shuffles slowly > when she walks and frequently has to catch herself from falling. My mother > is athletic. She always has been. She has exercised faithfully and watched > her diet every day of her life. At 70, she still walked several miles a day > biked several miles a day, and swam for an hour every day. This women is > only 6 years older than my mother and she can't even make her bed because > the thin bedspread is too heavy for her to handle. This woman never walks > alone and even then, after only a short walk sleeps for hours. This woman > spends most of her day sleeping. This woman couldn't be my mother. My > mother would NEVER allow us to help her dress, handle her medications, or > help her make her bed. My mother is far too proud to do that. This woman > couldn't be my mother. This woman can't figure out how to enter anything in > her check book nor how to read a calendar. My mother kept the books for an > entire school system by hand before computers and calculators. This woman > couldn't be my mother. > > Then, she came back to the door and called my name softly. She said " You're > breathing doesn't sound good. I'm worried about you. " (I have a sinus > infection.) Then I knew that this little woman is, indeed, my mother. She > is a much smaller, sweeter, funnier, warmer version of my mother, but she is > my mother. She still worries about her children (all three of them). She > is still the woman who gave birth to me, nursed me through the mumps, the > chicken pox, my hospitalization with the measles, changed my poopie diapers > with a smile, and cleaned up my vomit without complaint. She is still the > woman who taught me how to ride a bike, how to ice skate, how to spell, and > how to reach out to others in need. She is still the woman who bandaged > countless skinned knees, worked a full time job, drove my two sisters and I > to Brownie and Girl Scout meetings, and to music lessons (after fighting > with my father to get us those lessons). She is still the woman who worked > all day and stayed up late at night ironing our dresses (yes, we grew up in > the dark ages when you weren't allowed to wear pants to public school and no > " permapress " had not yet been invented), kept an immaculate house, and > helped us with our homework. She is still the same woman who went to more > elementary school band concerts than anyone should ever be subjected to. > She is the same woman who fought with our father so that we could go on > dates and so that we could go to college. She is still the woman who was > there the day I had surgery for what we thought was a tubal pregnancy and is > now my 25 year old daughter. She is still the same woman who took countless > days off from work to drive into New York City with me when my then two year > old needed chemotherapy. (Mom's routine was to smile at me and at Ruthie > all day long and then, when she was alone, give into the nausea and the > headache that came from the emotional days of treatment. ) She is still the > same woman who strove meticulously over the years to treat each and every > grandchild equally (it didn't matter to her if they were adopted or > biological). If one child got a dollar in a Halloween card, they all got a > dollar in a Halloween card. She is still the same woman who had brain > surgery without telling any of her children because she didn't want to worry > them. She is still the same woman who has maintained all of her adult life > that she never wanted to be a burden to any of us. > > Though LBD has taken much of her away, I realized in the early hours of the > new year, that her last wish has come true. She is NOT a burden to any of > us. She is a blessing to us. Caring for her is not a burden. It is a > privilege. Was my mother the perfect mother? No There is no such thing. > Were there times in our past when we didn't get along and said or did things > that hurt each other? Are we human? However, when it comes to " keeping > score " (which some of my relatives seem to need to do) we have to be sure to > look at the whole tally. The things I've listed here are but a small > percentage of the many blessings my mother has brought into my life. I don > t feel burdened and I know my sister and my daughter do not feel burdened > either. This little woman is warm and affectionate, appreciative, loving, > and funny. This phase of her life is, in some ways, the one I cherish most > because one of the nice things about LBD is that the patients can't hide > their emotions anymore behind the walls of scars live builds in all of us. > They are who they are in their purest form. To be able to give back to her > just a portion of what she has given to me is truly a blessing. My father > died very suddenly and unexpectedly and I did not have the opportunity I am > having now to just be with my mother and enjoy each other's company. On > those days when she is with it, we have conversations that are very > meaningful and are unlike any we have ever had before. She still loves all > of her children and suffers with a terribly broken heart due to her > estrangement from one of them. Even in her delirium, she will sometimes > look up, mention her name, and say " I guess I'll never see her again..... " > and a sadness that I can only imagine washes over her face. She would still > do anything for her grandchildren and still finds her greatest joy in life > in the faces of her four GORGEOUS great-grandchildren (none are mine...... > sigh....... but I enjoy them just the same!) > > Burdened? NO! Blessed? YES! I feel sorry for those who have chosen to > keep score of only the negatives and are missing out on the opportunity to > enjoy my mother in this precious time of her life. I am so happy that my > score keeping is honest so that I can see how much the blessings have > outweighed the problems we have had. We must cherish these times because we > know the course this disease will take and how it will probably end. > > I wish you all the happiest and healthiest of new years and I pray that God > will make clear the blessings in a life that can be very difficult at times. > I thank all the LBD patients on this list for all you have taught me and I > thank the caregivers on the list for all the great information and all the > support. I thank God for giving me the opportunity to spend this time with > my Mom. It is my prayer that all who know her will put their petty issues > aside and enjoy the blessings for they are fleeting all too quickly away. > > She is my mother and I am VERY proud of the grace (no pun intended) and > dignity with which she is accepting and handing a disease which has always > been the biggest fear of her life. > > Happy New Year! > > Gladys Stefany VERY proud daughter of > Grace C (Lewy Bodies Dementia patient) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 I try to poke fun at the weird situations here because the change in Grandma from this disease has been a change for the meaner rather than sweeter. Grandma was an elementary school teacher (and before that a dairy farmer's wife) for a LONG time and although she was never very physically affectionate us grandkids always knew she loved us. She played games with us, colored, cooked us nice food, always had a smile and a laugh, and every once in a while you might get a hug. She was always the caregiver, the strong one. She took care of my uncle when he was sick with cancer and she cared for grandpa when he was sick with lung disease. She even came over to my mother's house weekly and did the laundry and cleaned so that mom wouldn't have to. She traveled after she was retired (walking trips in England and Scotland), was in the local county band, and exercised every day. Now she is tired and angry and mean SOO much of the time. She can't seem to think about anything except in a negative way. I think the change from being careGIVER to careHAVER has been too difficult for her. She can care for others with ease but letting someone else care for her is too much. LBD has robbed her of the desire to do anything and yet although she can't express it I think she remembers in some way that she used to be a very active person. She has started to eat a little more (yesterday we got in 1 pancake, 1/2 a sandwich at lunch, 1/2 a sandwich at dinner) but still not enough for me not to worry. We're taking her to the doctor this afternoon just so we can keep him in the loop. I really don't think theres much he can do since its pretty clear there isn't anything PHYSICAL wrong. Nothing new anyway. But maybe if HE tells her she has to eat and drink more it will help a little. And of course we'll have her tested for UTI again just in case. But she is eating a little, I got her in the shower 2 days in a row (!!!!), and she is giving clear evidence that she is VERY not constipated anymore for the moment. Small victories and probably fleeting ones but victories none the less. Emma PS Getting the car stuck in the foot deep snow in the driveway wasn't nearly as funny as I had thought it would be yesterday when I had to pay the tow guy $65 to get it back out this morning. ;-) ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 hi emma -- sorry to hear about your tow and the $$ for it -- but soooo glad to read your earlier post about bra shopping! i know how therapeutic that can be. xo anna Re: Gladys: Who was that woman? I try to poke fun at the weird situations here because the change in Grandma from this disease has been a change for the meaner rather than sweeter. Grandma was an elementary school teacher (and before that a dairy farmer's wife) for a LONG time and although she was never very physically affectionate us grandkids always knew she loved us. She played games with us, colored, cooked us nice food, always had a smile and a laugh, and every once in a while you might get a hug. She was always the caregiver, the strong one. She took care of my uncle when he was sick with cancer and she cared for grandpa when he was sick with lung disease. She even came over to my mother's house weekly and did the laundry and cleaned so that mom wouldn't have to. She traveled after she was retired (walking trips in England and Scotland), was in the local county band, and exercised every day. Now she is tired and angry and mean SOO much of the time. She can't seem to think about anything except in a negative way. I think the change from being careGIVER to careHAVER has been too difficult for her. She can care for others with ease but letting someone else care for her is too much. LBD has robbed her of the desire to do anything and yet although she can't express it I think she remembers in some way that she used to be a very active person. She has started to eat a little more (yesterday we got in 1 pancake, 1/2 a sandwich at lunch, 1/2 a sandwich at dinner) but still not enough for me not to worry. We're taking her to the doctor this afternoon just so we can keep him in the loop. I really don't think theres much he can do since its pretty clear there isn't anything PHYSICAL wrong. Nothing new anyway. But maybe if HE tells her she has to eat and drink more it will help a little. And of course we'll have her tested for UTI again just in case. But she is eating a little, I got her in the shower 2 days in a row (!!!!), and she is giving clear evidence that she is VERY not constipated anymore for the moment. Small victories and probably fleeting ones but victories none the less. Emma PS Getting the car stuck in the foot deep snow in the driveway wasn't nearly as funny as I had thought it would be yesterday when I had to pay the tow guy $65 to get it back out this morning. ;-) ____________ _________ _________ _________ _________ _________ _ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
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