Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 Hey Ya'll Isn't this one of the most moving post ? I wanted to cry but sucked it up and read and thought, what a wonderful daughter. Jayn in S GA **************************************See AOL's top rated recipes (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 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 Gladys, This was beautiful and heartwarming, and uplifting.Big hugs to you, your precious mother and all tonight.And thank you so much for sharing this with us. Ron 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 Gladys: A wonderful tribute to your mother. I have often thought that this disease (and other dementias) not only robs the person themselves, but look at the loss of intelligence, help, ideas, and other traits that the rest of society loses each time someone has this terrible disease. A terrible waste of the mind (and body). How I hope that the new year will bring some progress on a cure or preventive for this and other neurological diseases. June --- 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, > === message truncated === ________________________________________________________________________________\ ____ 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 1, 2008 Report Share Posted January 1, 2008 Good Lord Gladys but you had me reaching for one hankie after another. I don't think I can comment further. Courage Who was that woman? 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 Hi Jayn! Glad to see you here. How are you doing? Happy New Year. 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. Re: Who was that woman? Hey Ya'll Isn't this one of the most moving post ? I wanted to cry but sucked it up and read and thought, what a wonderful daughter. Jayn in S GA **************************************See AOL's top rated recipes (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 Gladys, Such a beautiful tribute to your Mom. And it seems every one hear has heard you loud and clear. Love shines through at every level. As your daughter comes on, I imagine we will have 3 generations of very loving caring people. How lucky we are to know you and your family. Hugs, And what a special New Year! 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. Who was that woman? 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 Gladys - Beautiful, just beautiful. Saving this post... And what you wrote were the same sentiments that I felt about my mom. I couldn't believe that there was any room to improve my relationship with my mom - but we did become even closer during Lewy'ville time. My dad passed suddenly as well - in 1996. Mom & I were not connecting right before my father passed. His sudden passing made us realize what is / is not important and we had 10 years to rekindle our unconditional love for each other. Mom's last year in 2006 we became even closer and I'll get to keep that in my heart forever. I feel sorry for those family members who chose to hide when mom became ill. Luckily I was blessed w/ the time I shared w/ mom when she needed me most - a woman who had always been independent and never wanted to be a burden and was always the caregiver from when her father passed when she was 16 and she had to step up and play a parental role to her 4 siblings, to caregiving her husband and 3 children, to caregiving her MIL and caregiving anyone who requested her help - from neighbors to strangers. I was able to give back her gift of caregiving to her when she needed it and I'm honored that I was able to do so. (I wasn't a 24/7 caregiver, but instead an advocate caregiver of a woman who wanted to stay independent for as long as possible - she got her wish - she was independent up until her last year of life.) Thank you for sharing your New Year's reflection and I'm glad you see your role as a blessing -- which it is. ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 Gladys, This is beautiful. I identified with a majority of what you wrote and feel the same way about my Mom. I so agree that they " are who they are in their purest form. " I've been able to connect with my Mom's essence every second I'm with her. It's at a different level and truly special. I'm so grateful to have this time with her. And, as you also said, " To be able to give back to herjust a portion of what she has given to me is truly a blessing. " " Gladys Stefany " <agoramom@... > To Sent by: <LBDcaregivers > LBDcaregivers@yah cc oogroups.com Subject Who was that woman? 01/01/2008 07:42 PM Please respond to LBDcaregivers@yah oogroups.com 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 Gladys: You must send this writing to Neurology Today or put it in the LBD writings. This is so insightful and also so sad and beautiful at the same time. Please share it other places. Myrna (70) in Sullivan,Missouri USA Caregiver for Husband Jerry (72) Diagnosed AD 1997, LBD 2004 Married 52 years, Stage 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 Gladys, your msg brought tears to my eyes! I better learn to stop reading these posts while at work! Engles SEIU-UHW Shop Steward ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
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