Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 Jayn, Sending you, Teva and your family much strength for the journey ahead. Courage Teva It seems now that time is very short for my sister. I was down last Monday thinking she would not make it thru the week. On Tues. her oldest son told me it was the worse day of his life. She was very combative and he couldn't get her to eat. On Wed he called to tell me it was the best day of his life. Seems Teva had eaten all her breakfast, and he had gone home and cooked bass for her lunch and she ate really well. Thur things were not looking very well and by Fri she was not eating or drinking. I believe since last Fri she has taken about 2 small cups of ice cream and very little water. I went back down today and said my goodbys and got lots of loving on her while it was just the two of us. She had no urine out put from the time I got there about lunch time until I left at 7:30 pm. So I know she can't live much longer. My head tells me she will be free of the " beast " and free from all that it has done to her. My heart hasn't gotten there yet. I am not telling Ruth (the sister living with us) I just don't see it would be the best thing for her, or maybe I just don't want to deal with what it would do to her. I have mixed feeling about the whole thing. I know she would really be upset and the funeral wouldn't help either. So I guess after Teva dies and Ruth ask about her I can truthfully say she is doing really well and yes we can go see her someday. Ya'll (souther for you all) please pray for us. Jayn in S GA **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Well it doesn't seem the web site I posted is working so I will give a little info about Teva's death. I had posted earlier in the week that I didn't think it would be long, I believe that was on Monday. Tues. I had a cataract removed from my eye, so I didn't get back to see her. I had to go back for a check up on my eye Wed morning. After I got home I decided to go be with her two boys, at that time I didn't know the situation with her. My eye was still dilated and it was an hour and a half drive to where she lived, so needless to say the trip was awful. When I got to the NH I asked if she had had any breathing changes and they said no. Hospice had been called in so she was not struggling but just shallow breating. I got there about 12:15 and this lasted until about 2:40 when she almost stopped breathing, she would take a breath, and we would wait and wait and think " this is it " and then she would breath again, this went on it seemed like for several minutes, but I am sure it was maybe a couple of minutes. My heart is heavy not for her but for me, because now all I can think about is how she was dressed when I would go to see her. Her pants looked like someone had ironed wrinkles in them, the hem was out on one pair and her top would look just as bad. What made it so bad, the lady had really nice cloths and I had bought socks to match the pants and even left a note to please dress her in her nice cloths, it didn't matter, I never saw her look any better and she was always dressed really nice before the disease took over. She wouldn't even wear jeans to rake her yards in if they weren't pressed . When I got to the funeral home to do her hair and makeup she didn't look like my sister. She had lost lots of weight after breaking her jaw bone several weeks ago, and not being able to eat. Anyway like I have read from others the LBD journey is over and she is now at peace. Please pray that I might have peace about the treatment she got in the NH. If I knew what to do to make it better for others that are still there, I would. She was a very special sister and I will miss her soooo very much Jayn in S GA **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Jayn, Condolences to you and Teva's family. It is over and she is at peace. I had people at Mom's funeral who chose to just look at one of her old pictures I had on the casket. They wanted to " remember her the way she was. " and that was ok with me. If we can be of help as you do your final grieving let us know. 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. Teva Well it doesn't seem the web site I posted is working so I will give a little info about Teva's death. I had posted earlier in the week that I didn't think it would be long, I believe that was on Monday. Tues. I had a cataract removed from my eye, so I didn't get back to see her. I had to go back for a check up on my eye Wed morning. After I got home I decided to go be with her two boys, at that time I didn't know the situation with her. My eye was still dilated and it was an hour and a half drive to where she lived, so needless to say the trip was awful. When I got to the NH I asked if she had had any breathing changes and they said no. Hospice had been called in so she was not struggling but just shallow breating. I got there about 12:15 and this lasted until about 2:40 when she almost stopped breathing, she would take a breath, and we would wait and wait and think " this is it " and then she would breath again, this went on it seemed like for several minutes, but I am sure it was maybe a couple of minutes. My heart is heavy not for her but for me, because now all I can think about is how she was dressed when I would go to see her. Her pants looked like someone had ironed wrinkles in them, the hem was out on one pair and her top would look just as bad. What made it so bad, the lady had really nice cloths and I had bought socks to match the pants and even left a note to please dress her in her nice cloths, it didn't matter, I never saw her look any better and she was always dressed really nice before the disease took over. She wouldn't even wear jeans to rake her yards in if they weren't pressed . When I got to the funeral home to do her hair and makeup she didn't look like my sister. She had lost lots of weight after breaking her jaw bone several weeks ago, and not being able to eat. Anyway like I have read from others the LBD journey is over and she is now at peace. Please pray that I might have peace about the treatment she got in the NH. If I knew what to do to make it better for others that are still there, I would. She was a very special sister and I will miss her soooo very much Jayn in S GA **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Jayn, I also could not get into the website you sent so am glad you returned to us with your description of Teva's final good bye. You were amazing to drive the distance so soon after your cataract surgery. Thankfully she waited for you. I am sorry what is weighing on you now is the memory of how poorly she was dressed in the nh, possibly indicative of poor care. Hopefully those feelings will be replaced with happier memories, of her whole life journey and not just the end. I found the vivid memories of Mom's end gradually faded and recessed, all blended so that now I can remember the whole person, not just the dying person. It took months, but happened. I will hope for the same for you. , Oakville Ont. Mother, age 92, died Aug. 12/06 after 13 year decline from PDD > > Well it doesn't seem the web site I posted is working so I will > give a little info about Teva's death. > I had posted earlier in the week that I didn't think it would > be long, I believe that was on Monday. > Tues. I had a cataract removed from my eye, so I didn't get > back to see her. I had to go back for a check up on my eye > Wed morning. After I got home I decided to go be with her > two boys, at that time I didn't know the situation with her. > My eye was still dilated and it was an hour and a half > drive to where she lived, so needless to say the trip was > awful. > When I got to the NH I asked if she had had any breathing > changes and they said no. Hospice had been called in so > she was not struggling but just shallow breating. I got > there about 12:15 and this lasted until about 2:40 when > she almost stopped breathing, she would take a breath, > and we would wait and wait and think " this is it " and > then she would breath again, this went on it seemed like > for several minutes, but I am sure it was maybe a couple > of minutes. > My heart is heavy not for her but for me, because now > all I can think about is how she was dressed when I would > go to see her. Her pants looked like someone had ironed > wrinkles in them, the hem was out on one pair and her > top would look just as bad. > What made it so bad, the lady had really nice cloths and > I had bought socks to match the pants and even left a note > to please dress her in her nice cloths, it didn't matter, I never > saw her look any better and she was always dressed really > nice before the disease took over. She wouldn't even wear > jeans to rake her yards in if they weren't pressed . > When I got to the funeral home to do her hair and makeup > she didn't look like my sister. She had lost lots of weight after > breaking her jaw bone several weeks ago, and not being able > to eat. > Anyway like I have read from others the LBD journey is > over and she is now at peace. Please pray that I might > have peace about the treatment she got in the NH. If I > knew what to do to make it better for others that are still > there, I would. > She was a very special sister and I will miss her soooo very > much > > Jayn > in S GA > > > > > > **************It's Tax Time! Get tips, forms, and advice on AOL Money & > Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Jayn, My condolences to you on the passing of your sister Teva. I am sending you and her boys much strength. I am happy that you had the opportunity to be with her at this time. Courage Teva Well it doesn't seem the web site I posted is working so I will give a little info about Teva's death. I had posted earlier in the week that I didn't think it would be long, I believe that was on Monday. Tues. I had a cataract removed from my eye, so I didn't get back to see her. I had to go back for a check up on my eye Wed morning. After I got home I decided to go be with her two boys, at that time I didn't know the situation with her. My eye was still dilated and it was an hour and a half drive to where she lived, so needless to say the trip was awful. When I got to the NH I asked if she had had any breathing changes and they said no. Hospice had been called in so she was not struggling but just shallow breating. I got there about 12:15 and this lasted until about 2:40 when she almost stopped breathing, she would take a breath, and we would wait and wait and think " this is it " and then she would breath again, this went on it seemed like for several minutes, but I am sure it was maybe a couple of minutes. My heart is heavy not for her but for me, because now all I can think about is how she was dressed when I would go to see her. Her pants looked like someone had ironed wrinkles in them, the hem was out on one pair and her top would look just as bad. What made it so bad, the lady had really nice cloths and I had bought socks to match the pants and even left a note to please dress her in her nice cloths, it didn't matter, I never saw her look any better and she was always dressed really nice before the disease took over. She wouldn't even wear jeans to rake her yards in if they weren't pressed . When I got to the funeral home to do her hair and makeup she didn't look like my sister. She had lost lots of weight after breaking her jaw bone several weeks ago, and not being able to eat. Anyway like I have read from others the LBD journey is over and she is now at peace. Please pray that I might have peace about the treatment she got in the NH. If I knew what to do to make it better for others that are still there, I would. She was a very special sister and I will miss her soooo very much Jayn in S GA **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Jayn - Please accept my heartfelt condolences on the passing of your beloved sister. And I'm sorry that you're feeling bitter about her final days at the NH. My mother, too, had always dressed to the nines and I'd get frustrated when I'd visit her and her clothes were mitch matched and/or she was wearing outfits intended as snuggly PJs not as a day outfit. I finally pulled out all her clothes in the closet and would put outfits together onto one hanger to avoid the goofy clothes I'd see her in. Other residents clothes would find their way into my mom's closet (like the New Kids on the Block T-shirt - how silly!) I'm sure she wasn't thrilled with the CNAs choices either. Items that looked ridiculous finally were just brought home. We chose not to have my mom viewed at the funeral. She didn't even look like the same person towards the end. Instead we had a celebration of life for her - the funeral home was covered with pictures of her. Had her artwork displayed. Had her favorite flowers displayed (including he favored orchids - for that we chose 3 orchids to represent her 3 kids and had them displayed where a casket would be)...along w/ 2 of her best pictures - one from the early years (she was a knock out) and one from about 5 years earlier but how she's always remembered - the 'silver fox' ... Anyway - sorry for going on - but I hear you in your disappointment and I truly hope the sadness will be short, and the loving, happy memories put a smile to your face real soon. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Jayn: May I add my condolences as well. I know what you mean about the NH. Much as I tried to get them to put on his clothing that looked good together, he was often dressed terribly. I know they are busy, but it's not hard to look at something at see it doesn't go. I couldn't get in on your site, either, although I did get to the funeral home site, but then it would let me in to the obituaries. Again, condolences. June --- wrote: > Jayn - Please accept my heartfelt condolences on the > passing of your > beloved sister. And I'm sorry that you're feeling > bitter about her > final days at the NH. My mother, too, had always > dressed to the nines > and I'd get frustrated when I'd visit her and her > clothes were mitch > matched and/or she was wearing outfits intended as > snuggly PJs not as > a day outfit. I finally pulled out all her clothes > in the closet and > would put outfits together onto one hanger to avoid > the goofy clothes > I'd see her in. Other residents clothes would find > their way into my > mom's closet (like the New Kids on the Block T-shirt > - how silly!) > I'm sure she wasn't thrilled with the CNAs choices > either. Items that > looked ridiculous finally were just brought home. We > chose not to > have my mom viewed at the funeral. She didn't even > look like the same > person towards the end. Instead we had a celebration > of life for her - > the funeral home was covered with pictures of her. > Had her artwork > displayed. Had her favorite flowers displayed > (including he favored > orchids - for that we chose 3 orchids to represent > her 3 kids and had > them displayed where a casket would be)...along w/ 2 > of her best > pictures - one from the early years (she was a knock > out) and one > from about 5 years earlier but how she's always > remembered - > the 'silver fox' ... > > Anyway - sorry for going on - but I hear you in your > disappointment > and I truly hope the sadness will be short, and the > loving, happy > memories put a smile to your face real soon. Take > care. > > > > ________________________________________________________________________________\ ____ 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...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Jayn: I'm sorry about the loss of your sister. I too have a sister with LBD and our father died 12 years ago from it, so I deeply understand your loss. Unfortunately, I'm relatively new to this forum so I don't have the history on your NH experience, but from what I sense it hasn't been the most pleasant. My father's experience (he was inpatiented for 5 1/2 yrs before his death) was both positive and negative. On a positive note about how you may help others in the facility... Do they have a family council or can one be established? I participated in one for a number of months, meeting with staff and administrators on how to improve family/staff communications. Family members gave presentations on their loved one from childhood to present so that staff could better know the person before the disease. Also, do they have volunteer opportunities at the facility. Many times a few moments spent each week or once a month making a difference in another person's care is very healing. It can be as simple as pushing them outside and enjoying the fresh air and listening to the birds or seeing a flower. The negative experience and what I had to do regarding my father was extensive. I brought the state into the facility and 16 citations were issued on his behalf. My only satisfaction was that in the year surrounding this period all upper level personnel at the facility were replaced. My mission at this time is to see that my sister's disease course and her health care is better than our father's. We were always in a reactive mode and now we want to be as pro-active as possible. I wish you peace of heart during this time. She will always be with you. Helen > > > Jayn, > > I am so sorry to hear about your sister. I know how close you were and > wish you many wonderful memories. Re the nursing home, it might make you > feel better to write to the administrator and tell your feelings. It may > make a difference and you'll feel better having gotten in out of you and > onto paper. I wish you love and peace, Norma > > > > > jja52538@... > Sent by: > LBDcaregivers@yah To > oogroups.com LBDcaregivers > cc > > 03/15/2008 12:18 Subject > AM Teva > > > Please respond to > LBDcaregivers@yah > oogroups.com > > > > > > > > > > Well it doesn't seem the web site I posted is working so I will > give a little info about Teva's death. > I had posted earlier in the week that I didn't think it would > be long, I believe that was on Monday. > Tues. I had a cataract removed from my eye, so I didn't get > back to see her. I had to go back for a check up on my eye > Wed morning. After I got home I decided to go be with her > two boys, at that time I didn't know the situation with her. > My eye was still dilated and it was an hour and a half > drive to where she lived, so needless to say the trip was > awful. > When I got to the NH I asked if she had had any breathing > changes and they said no. Hospice had been called in so > she was not struggling but just shallow breating. I got > there about 12:15 and this lasted until about 2:40 when > she almost stopped breathing, she would take a breath, > and we would wait and wait and think " this is it " and > then she would breath again, this went on it seemed like > for several minutes, but I am sure it was maybe a couple > of minutes. > My heart is heavy not for her but for me, because now > all I can think about is how she was dressed when I would > go to see her. Her pants looked like someone had ironed > wrinkles in them, the hem was out on one pair and her > top would look just as bad. > What made it so bad, the lady had really nice cloths and > I had bought socks to match the pants and even left a note > to please dress her in her nice cloths, it didn't matter, I never > saw her look any better and she was always dressed really > nice before the disease took over. She wouldn't even wear > jeans to rake her yards in if they weren't pressed . > When I got to the funeral home to do her hair and makeup > she didn't look like my sister. She had lost lots of weight after > breaking her jaw bone several weeks ago, and not being able > to eat. > Anyway like I have read from others the LBD journey is > over and she is now at peace. Please pray that I might > have peace about the treatment she got in the NH. If I > knew what to do to make it better for others that are still > there, I would. > She was a very special sister and I will miss her soooo very > much > > Jayn > in S GA > > > > **************It's Tax Time! Get tips, forms, and advice on AOL Money & > Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Dear Jayne, Please know you are in my thoughts and prayers. Of course you will miss your sister: you were attentive, caring and gave her much love. Give yourself some time, and I imagine you will feel more at peace about issues related to how NH staff dressed your dear Teva. If not, Helen's suggestion is excellent. I work for a wonderful senior care organization: good facilities always want to hear how they can improve. Please stay in touch with us - we will always care. Lin Helen wrote: Jayn: I'm sorry about the loss of your sister. I too have a sister with LBD and our father died 12 years ago from it, so I deeply understand your loss. Unfortunately, I'm relatively new to this forum so I don't have the history on your NH experience, but from what I sense it hasn't been the most pleasant. My father's experience (he was inpatiented for 5 1/2 yrs before his death) was both positive and negative. On a positive note about how you may help others in the facility... Do they have a family council or can one be established? I participated in one for a number of months, meeting with staff and administrators on how to improve family/staff communications. Family members gave presentations on their loved one from childhood to present so that staff could better know the person before the disease. Also, do they have volunteer opportunities at the facility. Many times a few moments spent each week or once a month making a difference in another person's care is very healing. It can be as simple as pushing them outside and enjoying the fresh air and listening to the birds or seeing a flower. The negative experience and what I had to do regarding my father was extensive. I brought the state into the facility and 16 citations were issued on his behalf. My only satisfaction was that in the year surrounding this period all upper level personnel at the facility were replaced. My mission at this time is to see that my sister's disease course and her health care is better than our father's. We were always in a reactive mode and now we want to be as pro-active as possible. I wish you peace of heart during this time. She will always be with you. Helen > > > Jayn, > > I am so sorry to hear about your sister. I know how close you were and > wish you many wonderful memories. Re the nursing home, it might make you > feel better to write to the administrator and tell your feelings. It may > make a difference and you'll feel better having gotten in out of you and > onto paper. I wish you love and peace, Norma > > > > > jja52538@... > Sent by: > LBDcaregivers@yah To > oogroups.com LBDcaregivers > cc > > 03/15/2008 12:18 Subject > AM Teva > > > Please respond to > LBDcaregivers@yah > oogroups.com > > > > > > > > > > Well it doesn't seem the web site I posted is working so I will > give a little info about Teva's death. > I had posted earlier in the week that I didn't think it would > be long, I believe that was on Monday. > Tues. I had a cataract removed from my eye, so I didn't get > back to see her. I had to go back for a check up on my eye > Wed morning. After I got home I decided to go be with her > two boys, at that time I didn't know the situation with her. > My eye was still dilated and it was an hour and a half > drive to where she lived, so needless to say the trip was > awful. > When I got to the NH I asked if she had had any breathing > changes and they said no. Hospice had been called in so > she was not struggling but just shallow breating. I got > there about 12:15 and this lasted until about 2:40 when > she almost stopped breathing, she would take a breath, > and we would wait and wait and think " this is it " and > then she would breath again, this went on it seemed like > for several minutes, but I am sure it was maybe a couple > of minutes. > My heart is heavy not for her but for me, because now > all I can think about is how she was dressed when I would > go to see her. Her pants looked like someone had ironed > wrinkles in them, the hem was out on one pair and her > top would look just as bad. > What made it so bad, the lady had really nice cloths and > I had bought socks to match the pants and even left a note > to please dress her in her nice cloths, it didn't matter, I never > saw her look any better and she was always dressed really > nice before the disease took over. She wouldn't even wear > jeans to rake her yards in if they weren't pressed . > When I got to the funeral home to do her hair and makeup > she didn't look like my sister. She had lost lots of weight after > breaking her jaw bone several weeks ago, and not being able > to eat. > Anyway like I have read from others the LBD journey is > over and she is now at peace. Please pray that I might > have peace about the treatment she got in the NH. If I > knew what to do to make it better for others that are still > there, I would. > She was a very special sister and I will miss her soooo very > much > > Jayn > in S GA > > > > **************It's Tax Time! Get tips, forms, and advice on AOL Money & > Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) > > Quote Link to comment Share on other sites More sharing options...
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