Guest guest Posted August 27, 2008 Report Share Posted August 27, 2008 Hi Kate, It sounds like you're doing a fantastic job handling everything. You've got a full schedule and it sounds like a very loving and supportive family. I hope you can find a doctor that will work with you and get your MOL the care and services she needs. Good luck, Holly > > Hi everyone, > Just wanted to let you all know that my MOL Joyce is home with us, > now, and in the middle of her third week here (after about four > months in a nh). Things are c r a z y -- between our work schedules, > the baby (a very happy and bouncy 9 mo old despite all his allergies > to milk, wheat and eggs!), homeschooling schedules (especially with > my high schooler who is taking some college classes and has to be > ferried back and forth), and supervising all her care 24/7. > The hardest thing in this transition has been working through the > medical system; even things the nursing home therapy staff > recommended are beginning to 'fall through' now that we have her at > home -- doctors who won't order the care for her, services that > suddenly aren't available (though they were availalbe when she was in > the nursing home!)....still, all that is to be expected; we're > becoming very accustomed to jumping through hoops! It makes no sense > to us that the 'system' almost forces people to go the nh route; we > have found, over and over again, that you hardly ever seem to get the > same answer twice, or the same care, when you want to look after > someone at home. The worst thing was that we found out the doctor who > was supposedly supervising her care in the nh in reality didn't have > a clue who she was, what meds she was taking, or apparently what LBD > is in the first place. Six days after discharging her, and writing > scripts for all her meds, he demanded to see her again, questioned > her LBD diagnosis, changed her meds (which of course we had just > filled and which had been an established part of her care for years > and viewed and okayed by countless prior doctros!), and declared she > had no need of in home therapy. Wow. We were blown away. Now it is > back to the grindstone trying to find a decent doctor in this town > who will actually understand her situation and work with us (what a > concept!) to get her the quality of care she needs. > The good news is that Joyce is much happier here at home than she was > in the nh, and though she cycles and has her completely off the wall > moments filled with delusions and hallucinations, most of the time we > have managed to maintain calm, and are trying our best to structure > things predictably for her. We just go with the flow, try to keep > her stable and from becoming fearful and upset, and do our best to > take as good care of her as we can. Of course, finances are a huge > issue, especially since my husband has had to return home full time > in order to help juggle everything, but we will do all we can within > those confines. We have some private help coming in to help bathe > her and take care of light housekeeping, and occasional 'adult > sitters'; we are doing okay, though this breakneck speed is very > tiring. > Joyce needs help with everything from getting up and walking to > eating to bathing, so an adult has to be with her all the time. One > thing I have noticed: most days she really just wants to sleep, and > even getting up to bathe and change or to come out and eat with us > tires her out. Her cognition seems to fluctuating sharply, too. The > days her mind is clearer, she is able to get around pretty well and > follow directions; when she is more confused, her motor skills > decline with that -- and when she is delusional and hallucinating, > her motor skills acually do the best of all...that is when she is > most inclined to be up all night, or wander. I do see that her level > of confusion is pretty consistently worse, now, than it was before > she went into the nh after her series of falls. > At any rate, she's here, and we're doing our best to keep up with her > and everything else. I appreciate any insight or helpful hints you > all might have as to her care and our sanity! > Thanks -- Kate > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > (but looking back, she was symptomatic much earlier than that). > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2008 Report Share Posted August 27, 2008 Hi Kate, It sounds like you're doing a fantastic job handling everything. You've got a full schedule and it sounds like a very loving and supportive family. I hope you can find a doctor that will work with you and get your MOL the care and services she needs. Good luck, Holly > > Hi everyone, > Just wanted to let you all know that my MOL Joyce is home with us, > now, and in the middle of her third week here (after about four > months in a nh). Things are c r a z y -- between our work schedules, > the baby (a very happy and bouncy 9 mo old despite all his allergies > to milk, wheat and eggs!), homeschooling schedules (especially with > my high schooler who is taking some college classes and has to be > ferried back and forth), and supervising all her care 24/7. > The hardest thing in this transition has been working through the > medical system; even things the nursing home therapy staff > recommended are beginning to 'fall through' now that we have her at > home -- doctors who won't order the care for her, services that > suddenly aren't available (though they were availalbe when she was in > the nursing home!)....still, all that is to be expected; we're > becoming very accustomed to jumping through hoops! It makes no sense > to us that the 'system' almost forces people to go the nh route; we > have found, over and over again, that you hardly ever seem to get the > same answer twice, or the same care, when you want to look after > someone at home. The worst thing was that we found out the doctor who > was supposedly supervising her care in the nh in reality didn't have > a clue who she was, what meds she was taking, or apparently what LBD > is in the first place. Six days after discharging her, and writing > scripts for all her meds, he demanded to see her again, questioned > her LBD diagnosis, changed her meds (which of course we had just > filled and which had been an established part of her care for years > and viewed and okayed by countless prior doctros!), and declared she > had no need of in home therapy. Wow. We were blown away. Now it is > back to the grindstone trying to find a decent doctor in this town > who will actually understand her situation and work with us (what a > concept!) to get her the quality of care she needs. > The good news is that Joyce is much happier here at home than she was > in the nh, and though she cycles and has her completely off the wall > moments filled with delusions and hallucinations, most of the time we > have managed to maintain calm, and are trying our best to structure > things predictably for her. We just go with the flow, try to keep > her stable and from becoming fearful and upset, and do our best to > take as good care of her as we can. Of course, finances are a huge > issue, especially since my husband has had to return home full time > in order to help juggle everything, but we will do all we can within > those confines. We have some private help coming in to help bathe > her and take care of light housekeeping, and occasional 'adult > sitters'; we are doing okay, though this breakneck speed is very > tiring. > Joyce needs help with everything from getting up and walking to > eating to bathing, so an adult has to be with her all the time. One > thing I have noticed: most days she really just wants to sleep, and > even getting up to bathe and change or to come out and eat with us > tires her out. Her cognition seems to fluctuating sharply, too. The > days her mind is clearer, she is able to get around pretty well and > follow directions; when she is more confused, her motor skills > decline with that -- and when she is delusional and hallucinating, > her motor skills acually do the best of all...that is when she is > most inclined to be up all night, or wander. I do see that her level > of confusion is pretty consistently worse, now, than it was before > she went into the nh after her series of falls. > At any rate, she's here, and we're doing our best to keep up with her > and everything else. I appreciate any insight or helpful hints you > all might have as to her care and our sanity! > Thanks -- Kate > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > (but looking back, she was symptomatic much earlier than that). > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2008 Report Share Posted August 27, 2008 Hi Kate, It sounds like you're doing a fantastic job handling everything. You've got a full schedule and it sounds like a very loving and supportive family. I hope you can find a doctor that will work with you and get your MOL the care and services she needs. Good luck, Holly > > Hi everyone, > Just wanted to let you all know that my MOL Joyce is home with us, > now, and in the middle of her third week here (after about four > months in a nh). Things are c r a z y -- between our work schedules, > the baby (a very happy and bouncy 9 mo old despite all his allergies > to milk, wheat and eggs!), homeschooling schedules (especially with > my high schooler who is taking some college classes and has to be > ferried back and forth), and supervising all her care 24/7. > The hardest thing in this transition has been working through the > medical system; even things the nursing home therapy staff > recommended are beginning to 'fall through' now that we have her at > home -- doctors who won't order the care for her, services that > suddenly aren't available (though they were availalbe when she was in > the nursing home!)....still, all that is to be expected; we're > becoming very accustomed to jumping through hoops! It makes no sense > to us that the 'system' almost forces people to go the nh route; we > have found, over and over again, that you hardly ever seem to get the > same answer twice, or the same care, when you want to look after > someone at home. The worst thing was that we found out the doctor who > was supposedly supervising her care in the nh in reality didn't have > a clue who she was, what meds she was taking, or apparently what LBD > is in the first place. Six days after discharging her, and writing > scripts for all her meds, he demanded to see her again, questioned > her LBD diagnosis, changed her meds (which of course we had just > filled and which had been an established part of her care for years > and viewed and okayed by countless prior doctros!), and declared she > had no need of in home therapy. Wow. We were blown away. Now it is > back to the grindstone trying to find a decent doctor in this town > who will actually understand her situation and work with us (what a > concept!) to get her the quality of care she needs. > The good news is that Joyce is much happier here at home than she was > in the nh, and though she cycles and has her completely off the wall > moments filled with delusions and hallucinations, most of the time we > have managed to maintain calm, and are trying our best to structure > things predictably for her. We just go with the flow, try to keep > her stable and from becoming fearful and upset, and do our best to > take as good care of her as we can. Of course, finances are a huge > issue, especially since my husband has had to return home full time > in order to help juggle everything, but we will do all we can within > those confines. We have some private help coming in to help bathe > her and take care of light housekeeping, and occasional 'adult > sitters'; we are doing okay, though this breakneck speed is very > tiring. > Joyce needs help with everything from getting up and walking to > eating to bathing, so an adult has to be with her all the time. One > thing I have noticed: most days she really just wants to sleep, and > even getting up to bathe and change or to come out and eat with us > tires her out. Her cognition seems to fluctuating sharply, too. The > days her mind is clearer, she is able to get around pretty well and > follow directions; when she is more confused, her motor skills > decline with that -- and when she is delusional and hallucinating, > her motor skills acually do the best of all...that is when she is > most inclined to be up all night, or wander. I do see that her level > of confusion is pretty consistently worse, now, than it was before > she went into the nh after her series of falls. > At any rate, she's here, and we're doing our best to keep up with her > and everything else. I appreciate any insight or helpful hints you > all might have as to her care and our sanity! > Thanks -- Kate > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > (but looking back, she was symptomatic much earlier than that). > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2008 Report Share Posted August 28, 2008 Hi Kate, I don't know if you have a day care center near you or not. That really brought some order to my Mom's life, even when she complained about going. I did use a day care 7 days a week, but the 3 days she did go, gave me some time to do other things I needed to do. A senior bus picked her up and gave her some time with someone other than me. And some organized activities. They are doing more and more toward helping with dementia patients care there, if you have one. And I was helped financially with her payments to the daycare. They asked what I could afford to pay with no other questions asked. Mom also slept better when she was active during the day. Her confusion was greater when she was tired. And she didn't sleep a lot at night. 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: My MOL Joyce is home Hi Kate, It sounds like you're doing a fantastic job handling everything. You've got a full schedule and it sounds like a very loving and supportive family. I hope you can find a doctor that will work with you and get your MOL the care and services she needs. Good luck, Holly > > Hi everyone, > Just wanted to let you all know that my MOL Joyce is home with us, > now, and in the middle of her third week here (after about four > months in a nh). Things are c r a z y -- between our work schedules, > the baby (a very happy and bouncy 9 mo old despite all his allergies > to milk, wheat and eggs!), homeschooling schedules (especially with > my high schooler who is taking some college classes and has to be > ferried back and forth), and supervising all her care 24/7. > The hardest thing in this transition has been working through the > medical system; even things the nursing home therapy staff > recommended are beginning to 'fall through' now that we have her at > home -- doctors who won't order the care for her, services that > suddenly aren't available (though they were availalbe when she was in > the nursing home!)....still, all that is to be expected; we're > becoming very accustomed to jumping through hoops! It makes no sense > to us that the 'system' almost forces people to go the nh route; we > have found, over and over again, that you hardly ever seem to get the > same answer twice, or the same care, when you want to look after > someone at home. The worst thing was that we found out the doctor who > was supposedly supervising her care in the nh in reality didn't have > a clue who she was, what meds she was taking, or apparently what LBD > is in the first place. Six days after discharging her, and writing > scripts for all her meds, he demanded to see her again, questioned > her LBD diagnosis, changed her meds (which of course we had just > filled and which had been an established part of her care for years > and viewed and okayed by countless prior doctros!), and declared she > had no need of in home therapy. Wow. We were blown away. Now it is > back to the grindstone trying to find a decent doctor in this town > who will actually understand her situation and work with us (what a > concept!) to get her the quality of care she needs. > The good news is that Joyce is much happier here at home than she was > in the nh, and though she cycles and has her completely off the wall > moments filled with delusions and hallucinations, most of the time we > have managed to maintain calm, and are trying our best to structure > things predictably for her. We just go with the flow, try to keep > her stable and from becoming fearful and upset, and do our best to > take as good care of her as we can. Of course, finances are a huge > issue, especially since my husband has had to return home full time > in order to help juggle everything, but we will do all we can within > those confines. We have some private help coming in to help bathe > her and take care of light housekeeping, and occasional 'adult > sitters'; we are doing okay, though this breakneck speed is very > tiring. > Joyce needs help with everything from getting up and walking to > eating to bathing, so an adult has to be with her all the time. One > thing I have noticed: most days she really just wants to sleep, and > even getting up to bathe and change or to come out and eat with us > tires her out. Her cognition seems to fluctuating sharply, too. The > days her mind is clearer, she is able to get around pretty well and > follow directions; when she is more confused, her motor skills > decline with that -- and when she is delusional and hallucinating, > her motor skills acually do the best of all...that is when she is > most inclined to be up all night, or wander. I do see that her level > of confusion is pretty consistently worse, now, than it was before > she went into the nh after her series of falls. > At any rate, she's here, and we're doing our best to keep up with her > and everything else. I appreciate any insight or helpful hints you > all might have as to her care and our sanity! > Thanks -- Kate > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > (but looking back, she was symptomatic much earlier than that). > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2008 Report Share Posted August 28, 2008 Kate, I tip my hat to you and your husband for all that you. Best to you and your family. Courage My MOL Joyce is home Hi everyone, Just wanted to let you all know that my MOL Joyce is home with us, now, and in the middle of her third week here (after about four months in a nh). Things are c r a z y -- between our work schedules, the baby (a very happy and bouncy 9 mo old despite all his allergies to milk, wheat and eggs!), homeschooling schedules (especially with my high schooler who is taking some college classes and has to be ferried back and forth), and supervising all her care 24/7. The hardest thing in this transition has been working through the medical system; even things the nursing home therapy staff recommended are beginning to 'fall through' now that we have her at home -- doctors who won't order the care for her, services that suddenly aren't available (though they were availalbe when she was in the nursing home!)....still, all that is to be expected; we're becoming very accustomed to jumping through hoops! It makes no sense to us that the 'system' almost forces people to go the nh route; we have found, over and over again, that you hardly ever seem to get the same answer twice, or the same care, when you want to look after someone at home. The worst thing was that we found out the doctor who was supposedly supervising her care in the nh in reality didn't have a clue who she was, what meds she was taking, or apparently what LBD is in the first place. Six days after discharging her, and writing scripts for all her meds, he demanded to see her again, questioned her LBD diagnosis, changed her meds (which of course we had just filled and which had been an established part of her care for years and viewed and okayed by countless prior doctros!), and declared she had no need of in home therapy. Wow. We were blown away. Now it is back to the grindstone trying to find a decent doctor in this town who will actually understand her situation and work with us (what a concept!) to get her the quality of care she needs. The good news is that Joyce is much happier here at home than she was in the nh, and though she cycles and has her completely off the wall moments filled with delusions and hallucinations, most of the time we have managed to maintain calm, and are trying our best to structure things predictably for her. We just go with the flow, try to keep her stable and from becoming fearful and upset, and do our best to take as good care of her as we can. Of course, finances are a huge issue, especially since my husband has had to return home full time in order to help juggle everything, but we will do all we can within those confines. We have some private help coming in to help bathe her and take care of light housekeeping, and occasional 'adult sitters'; we are doing okay, though this breakneck speed is very tiring. Joyce needs help with everything from getting up and walking to eating to bathing, so an adult has to be with her all the time. One thing I have noticed: most days she really just wants to sleep, and even getting up to bathe and change or to come out and eat with us tires her out. Her cognition seems to fluctuating sharply, too. The days her mind is clearer, she is able to get around pretty well and follow directions; when she is more confused, her motor skills decline with that -- and when she is delusional and hallucinating, her motor skills acually do the best of all...that is when she is most inclined to be up all night, or wander. I do see that her level of confusion is pretty consistently worse, now, than it was before she went into the nh after her series of falls. At any rate, she's here, and we're doing our best to keep up with her and everything else. I appreciate any insight or helpful hints you all might have as to her care and our sanity! Thanks -- Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2008 Report Share Posted August 28, 2008 Kate, I think daycare is awesome. You might be able to get some help too. I have a lady that works at the daycare that gives me respite at home too. My Mom thinks she is coming to visit. Kat Caregiver to Mom, Jane, 86, brain stem stroke survivor 2/06, diagnosed w/ LBD 3/08 Re: My MOL Joyce is home Hi Kate, It sounds like you're doing a fantastic job handling everything. You've got a full schedule and it sounds like a very loving and supportive family. I hope you can find a doctor that will work with you and get your MOL the care and services she needs. Good luck, Holly > > Hi everyone, > Just wanted to let you all know that my MOL Joyce is home with us, > now, and in the middle of her third week here (after about four > months in a nh). Things are c r a z y -- between our work schedules, > the baby (a very happy and bouncy 9 mo old despite all his allergies > to milk, wheat and eggs!), homeschooling schedules (especially with > my high schooler who is taking some college classes and has to be > ferried back and forth), and supervising all her care 24/7. > The hardest thing in this transition has been working through the > medical system; even things the nursing home therapy staff > recommended are beginning to 'fall through' now that we have her at > home -- doctors who won't order the care for her, services that > suddenly aren't available (though they were availalbe when she was in > the nursing home!)....still, all that is to be expected; we're > becoming very accustomed to jumping through hoops! It makes no sense > to us that the 'system' almost forces people to go the nh route; we > have found, over and over again, that you hardly ever seem to get the > same answer twice, or the same care, when you want to look after > someone at home. The worst thing was that we found out the doctor who > was supposedly supervising her care in the nh in reality didn't have > a clue who she was, what meds she was taking, or apparently what LBD > is in the first place. Six days after discharging her, and writing > scripts for all her meds, he demanded to see her again, questioned > her LBD diagnosis, changed her meds (which of course we had just > filled and which had been an established part of her care for years > and viewed and okayed by countless prior doctros!), and declared she > had no need of in home therapy. Wow. We were blown away. Now it is > back to the grindstone trying to find a decent doctor in this town > who will actually understand her situation and work with us (what a > concept!) to get her the quality of care she needs. > The good news is that Joyce is much happier here at home than she was > in the nh, and though she cycles and has her completely off the wall > moments filled with delusions and hallucinations, most of the time we > have managed to maintain calm, and are trying our best to structure > things predictably for her. We just go with the flow, try to keep > her stable and from becoming fearful and upset, and do our best to > take as good care of her as we can. Of course, finances are a huge > issue, especially since my husband has had to return home full time > in order to help juggle everything, but we will do all we can within > those confines. We have some private help coming in to help bathe > her and take care of light housekeeping, and occasional 'adult > sitters'; we are doing okay, though this breakneck speed is very > tiring. > Joyce needs help with everything from getting up and walking to > eating to bathing, so an adult has to be with her all the time. One > thing I have noticed: most days she really just wants to sleep, and > even getting up to bathe and change or to come out and eat with us > tires her out. Her cognition seems to fluctuating sharply, too. The > days her mind is clearer, she is able to get around pretty well and > follow directions; when she is more confused, her motor skills > decline with that -- and when she is delusional and hallucinating, > her motor skills acually do the best of all...that is when she is > most inclined to be up all night, or wander. I do see that her level > of confusion is pretty consistently worse, now, than it was before > she went into the nh after her series of falls. > At any rate, she's here, and we're doing our best to keep up with her > and everything else. I appreciate any insight or helpful hints you > all might have as to her care and our sanity! > Thanks -- Kate > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > (but looking back, she was symptomatic much earlier than that). > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2008 Report Share Posted August 28, 2008 Kate, I think daycare is awesome. You might be able to get some help too. I have a lady that works at the daycare that gives me respite at home too. My Mom thinks she is coming to visit. Kat Caregiver to Mom, Jane, 86, brain stem stroke survivor 2/06, diagnosed w/ LBD 3/08 Re: My MOL Joyce is home Hi Kate, It sounds like you're doing a fantastic job handling everything. You've got a full schedule and it sounds like a very loving and supportive family. I hope you can find a doctor that will work with you and get your MOL the care and services she needs. Good luck, Holly > > Hi everyone, > Just wanted to let you all know that my MOL Joyce is home with us, > now, and in the middle of her third week here (after about four > months in a nh). Things are c r a z y -- between our work schedules, > the baby (a very happy and bouncy 9 mo old despite all his allergies > to milk, wheat and eggs!), homeschooling schedules (especially with > my high schooler who is taking some college classes and has to be > ferried back and forth), and supervising all her care 24/7. > The hardest thing in this transition has been working through the > medical system; even things the nursing home therapy staff > recommended are beginning to 'fall through' now that we have her at > home -- doctors who won't order the care for her, services that > suddenly aren't available (though they were availalbe when she was in > the nursing home!)....still, all that is to be expected; we're > becoming very accustomed to jumping through hoops! It makes no sense > to us that the 'system' almost forces people to go the nh route; we > have found, over and over again, that you hardly ever seem to get the > same answer twice, or the same care, when you want to look after > someone at home. The worst thing was that we found out the doctor who > was supposedly supervising her care in the nh in reality didn't have > a clue who she was, what meds she was taking, or apparently what LBD > is in the first place. Six days after discharging her, and writing > scripts for all her meds, he demanded to see her again, questioned > her LBD diagnosis, changed her meds (which of course we had just > filled and which had been an established part of her care for years > and viewed and okayed by countless prior doctros!), and declared she > had no need of in home therapy. Wow. We were blown away. Now it is > back to the grindstone trying to find a decent doctor in this town > who will actually understand her situation and work with us (what a > concept!) to get her the quality of care she needs. > The good news is that Joyce is much happier here at home than she was > in the nh, and though she cycles and has her completely off the wall > moments filled with delusions and hallucinations, most of the time we > have managed to maintain calm, and are trying our best to structure > things predictably for her. We just go with the flow, try to keep > her stable and from becoming fearful and upset, and do our best to > take as good care of her as we can. Of course, finances are a huge > issue, especially since my husband has had to return home full time > in order to help juggle everything, but we will do all we can within > those confines. We have some private help coming in to help bathe > her and take care of light housekeeping, and occasional 'adult > sitters'; we are doing okay, though this breakneck speed is very > tiring. > Joyce needs help with everything from getting up and walking to > eating to bathing, so an adult has to be with her all the time. One > thing I have noticed: most days she really just wants to sleep, and > even getting up to bathe and change or to come out and eat with us > tires her out. Her cognition seems to fluctuating sharply, too. The > days her mind is clearer, she is able to get around pretty well and > follow directions; when she is more confused, her motor skills > decline with that -- and when she is delusional and hallucinating, > her motor skills acually do the best of all...that is when she is > most inclined to be up all night, or wander. I do see that her level > of confusion is pretty consistently worse, now, than it was before > she went into the nh after her series of falls. > At any rate, she's here, and we're doing our best to keep up with her > and everything else. I appreciate any insight or helpful hints you > all might have as to her care and our sanity! > Thanks -- Kate > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > (but looking back, she was symptomatic much earlier than that). > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Dear Holly, You are very kind -- I'm not so sure we are doing a good job handling everything...it is just one day at a time, one fire doused after another. We do our best, and that's all we can do -- besides, all things are possible in Christ. He does all the work, I just follow along I think we have gotten a better doctor, which is wonderful; it is impossible to actually get hold of him most of the time, but he does respond, even if it isn't directly and in person. That's a whole lot better than other alternatives! Thanks again, Holly, and God Bless, Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > > > Hi everyone, > > Just wanted to let you all know that my MOL Joyce is home with us, > > now, and in the middle of her third week here (after about four > > months in a nh). Things are c r a z y -- between our work > schedules, > > the baby (a very happy and bouncy 9 mo old despite all his > allergies > > to milk, wheat and eggs!), homeschooling schedules (especially with > > my high schooler who is taking some college classes and has to be > > ferried back and forth), and supervising all her care 24/7. > > The hardest thing in this transition has been working through the > > medical system; even things the nursing home therapy staff > > recommended are beginning to 'fall through' now that we have her at > > home -- doctors who won't order the care for her, services that > > suddenly aren't available (though they were availalbe when she was > in > > the nursing home!)....still, all that is to be expected; we're > > becoming very accustomed to jumping through hoops! It makes no > sense > > to us that the 'system' almost forces people to go the nh route; we > > have found, over and over again, that you hardly ever seem to get > the > > same answer twice, or the same care, when you want to look after > > someone at home. The worst thing was that we found out the doctor > who > > was supposedly supervising her care in the nh in reality didn't > have > > a clue who she was, what meds she was taking, or apparently what > LBD > > is in the first place. Six days after discharging her, and writing > > scripts for all her meds, he demanded to see her again, questioned > > her LBD diagnosis, changed her meds (which of course we had just > > filled and which had been an established part of her care for years > > and viewed and okayed by countless prior doctros!), and declared > she > > had no need of in home therapy. Wow. We were blown away. Now it > is > > back to the grindstone trying to find a decent doctor in this town > > who will actually understand her situation and work with us (what a > > concept!) to get her the quality of care she needs. > > The good news is that Joyce is much happier here at home than she > was > > in the nh, and though she cycles and has her completely off the > wall > > moments filled with delusions and hallucinations, most of the time > we > > have managed to maintain calm, and are trying our best to structure > > things predictably for her. We just go with the flow, try to keep > > her stable and from becoming fearful and upset, and do our best to > > take as good care of her as we can. Of course, finances are a huge > > issue, especially since my husband has had to return home full time > > in order to help juggle everything, but we will do all we can > within > > those confines. We have some private help coming in to help bathe > > her and take care of light housekeeping, and occasional 'adult > > sitters'; we are doing okay, though this breakneck speed is very > > tiring. > > Joyce needs help with everything from getting up and walking to > > eating to bathing, so an adult has to be with her all the time. > One > > thing I have noticed: most days she really just wants to sleep, > and > > even getting up to bathe and change or to come out and eat with us > > tires her out. Her cognition seems to fluctuating sharply, too. > The > > days her mind is clearer, she is able to get around pretty well and > > follow directions; when she is more confused, her motor skills > > decline with that -- and when she is delusional and hallucinating, > > her motor skills acually do the best of all...that is when she is > > most inclined to be up all night, or wander. I do see that her > level > > of confusion is pretty consistently worse, now, than it was before > > she went into the nh after her series of falls. > > At any rate, she's here, and we're doing our best to keep up with > her > > and everything else. I appreciate any insight or helpful hints you > > all might have as to her care and our sanity! > > Thanks -- Kate > > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > > (but looking back, she was symptomatic much earlier than that). > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Hi Donna, I appreciate your advice! We do have adult day care available here and we are looking in to it. I think it would give us some much needed respite. My main question, I guess, is that Joyce has never been a very social person; in fact, she has been extremely reclusive, and that trend just worsened as the years passed. She is not a 'joiner,' doesn't like most activities that others do (except shopping - she loves shopping, but now is neither able to get out and do it, can't read the catalogs or work the phone to do it long distance, and has effectively spent through all her ability to buy the things she wants -- which are very expensive, generally), and is very challenged by social situations. Even in the nh she refused to participate in the social activities that they made available (she wouldn't ever go eat in the dining room, for example, or join in any of the games or events they had available. I do think she played Bingo once in four months, and was pretty excited because she won some money...but she only did it that one time, in spite of it being a good experience overall). My husband and I just really don't know if adult day care, where she'd be surrounded by people, would help her or make her even more anxious and upset. Honestly, I am not trying to speak ill of her, but even basic family get-togethers have always been extremely hard for her (simple things like birthdays, for example). My gut feeling is that she would have a lot of negative behaviors as a result of being made to get up, get out and interact with others (assuming she even could -- when she is at her worst she is not aware of where she is or who any one else is; she's just in her own world). Even the getting up and getting dressed is stressful for her -- she spent years and years of her life just wearing a housecoat (yes, years: probably at least 40). She had a lot of nice clothes, but rarely wore them. One of the things she hated most about the nh was that they made her get up in the morning and get dressed. It bothered her to no end - she said they told her what to wear, that her clothes were uncomfortable, that the clothes didn't match right.... So, we just don't know if day care would work. Any one out there have any similar experiences or insight into this kind of situation? Thank you again, Donna -- we will be checking into it and may try it out; for us, it would be nice not to have to worry about time to the minute so much Blessings, Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > > > Hi everyone, > > Just wanted to let you all know that my MOL Joyce is home with us, > > now, and in the middle of her third week here (after about four > > months in a nh). Things are c r a z y -- between our work > schedules, > > the baby (a very happy and bouncy 9 mo old despite all his > allergies > > to milk, wheat and eggs!), homeschooling schedules (especially with > > my high schooler who is taking some college classes and has to be > > ferried back and forth), and supervising all her care 24/7. > > The hardest thing in this transition has been working through the > > medical system; even things the nursing home therapy staff > > recommended are beginning to 'fall through' now that we have her at > > home -- doctors who won't order the care for her, services that > > suddenly aren't available (though they were availalbe when she was > in > > the nursing home!)....still, all that is to be expected; we're > > becoming very accustomed to jumping through hoops! It makes no > sense > > to us that the 'system' almost forces people to go the nh route; we > > have found, over and over again, that you hardly ever seem to get > the > > same answer twice, or the same care, when you want to look after > > someone at home. The worst thing was that we found out the doctor > who > > was supposedly supervising her care in the nh in reality didn't > have > > a clue who she was, what meds she was taking, or apparently what > LBD > > is in the first place. Six days after discharging her, and writing > > scripts for all her meds, he demanded to see her again, questioned > > her LBD diagnosis, changed her meds (which of course we had just > > filled and which had been an established part of her care for years > > and viewed and okayed by countless prior doctros!), and declared > she > > had no need of in home therapy. Wow. We were blown away. Now it > is > > back to the grindstone trying to find a decent doctor in this town > > who will actually understand her situation and work with us (what a > > concept!) to get her the quality of care she needs. > > The good news is that Joyce is much happier here at home than she > was > > in the nh, and though she cycles and has her completely off the > wall > > moments filled with delusions and hallucinations, most of the time > we > > have managed to maintain calm, and are trying our best to structure > > things predictably for her. We just go with the flow, try to keep > > her stable and from becoming fearful and upset, and do our best to > > take as good care of her as we can. Of course, finances are a huge > > issue, especially since my husband has had to return home full time > > in order to help juggle everything, but we will do all we can > within > > those confines. We have some private help coming in to help bathe > > her and take care of light housekeeping, and occasional 'adult > > sitters'; we are doing okay, though this breakneck speed is very > > tiring. > > Joyce needs help with everything from getting up and walking to > > eating to bathing, so an adult has to be with her all the time. > One > > thing I have noticed: most days she really just wants to sleep, > and > > even getting up to bathe and change or to come out and eat with us > > tires her out. Her cognition seems to fluctuating sharply, too. > The > > days her mind is clearer, she is able to get around pretty well and > > follow directions; when she is more confused, her motor skills > > decline with that -- and when she is delusional and hallucinating, > > her motor skills acually do the best of all...that is when she is > > most inclined to be up all night, or wander. I do see that her > level > > of confusion is pretty consistently worse, now, than it was before > > she went into the nh after her series of falls. > > At any rate, she's here, and we're doing our best to keep up with > her > > and everything else. I appreciate any insight or helpful hints you > > all might have as to her care and our sanity! > > Thanks -- Kate > > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > > (but looking back, she was symptomatic much earlier than that). > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Thank you, Courage -- the support you all give here is really precious. I feel guilty because I am so self-centered in all this, but you are all such a big help! Blessings to you, Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > Kate, > > I tip my hat to you and your husband for all that you. > Best to you and your family. > Courage > > My MOL Joyce is home > > > Hi everyone, > Just wanted to let you all know that my MOL Joyce is home with us, > now, and in the middle of her third week here (after about four > months in a nh). Things are c r a z y -- between our work schedules, > the baby (a very happy and bouncy 9 mo old despite all his allergies > to milk, wheat and eggs!), homeschooling schedules (especially with > my high schooler who is taking some college classes and has to be > ferried back and forth), and supervising all her care 24/7. > The hardest thing in this transition has been working through the > medical system; even things the nursing home therapy staff > recommended are beginning to 'fall through' now that we have her at > home -- doctors who won't order the care for her, services that > suddenly aren't available (though they were availalbe when she was in > the nursing home!)....still, all that is to be expected; we're > becoming very accustomed to jumping through hoops! It makes no sense > to us that the 'system' almost forces people to go the nh route; we > have found, over and over again, that you hardly ever seem to get the > same answer twice, or the same care, when you want to look after > someone at home. The worst thing was that we found out the doctor who > was supposedly supervising her care in the nh in reality didn't have > a clue who she was, what meds she was taking, or apparently what LBD > is in the first place. Six days after discharging her, and writing > scripts for all her meds, he demanded to see her again, questioned > her LBD diagnosis, changed her meds (which of course we had just > filled and which had been an established part of her care for years > and viewed and okayed by countless prior doctros!), and declared she > had no need of in home therapy. Wow. We were blown away. Now it is > back to the grindstone trying to find a decent doctor in this town > who will actually understand her situation and work with us (what a > concept!) to get her the quality of care she needs. > The good news is that Joyce is much happier here at home than she was > in the nh, and though she cycles and has her completely off the wall > moments filled with delusions and hallucinations, most of the time we > have managed to maintain calm, and are trying our best to structure > things predictably for her. We just go with the flow, try to keep > her stable and from becoming fearful and upset, and do our best to > take as good care of her as we can. Of course, finances are a huge > issue, especially since my husband has had to return home full time > in order to help juggle everything, but we will do all we can within > those confines. We have some private help coming in to help bathe > her and take care of light housekeeping, and occasional 'adult > sitters'; we are doing okay, though this breakneck speed is very > tiring. > Joyce needs help with everything from getting up and walking to > eating to bathing, so an adult has to be with her all the time. One > thing I have noticed: most days she really just wants to sleep, and > even getting up to bathe and change or to come out and eat with us > tires her out. Her cognition seems to fluctuating sharply, too. The > days her mind is clearer, she is able to get around pretty well and > follow directions; when she is more confused, her motor skills > decline with that -- and when she is delusional and hallucinating, > her motor skills acually do the best of all...that is when she is > most inclined to be up all night, or wander. I do see that her level > of confusion is pretty consistently worse, now, than it was before > she went into the nh after her series of falls. > At any rate, she's here, and we're doing our best to keep up with her > and everything else. I appreciate any insight or helpful hints you > all might have as to her care and our sanity! > Thanks -- Kate > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > (but looking back, she was symptomatic much earlier than that). > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 Kate, Please, the reason we are all on here is to give you support. Not to make you feel guilty if you don't do the support thing. Some of us have been through all this and we know what it is like. That is why we are still here. You can do your giving later to the next group who need it. There are going to be plenty of them. Lots of 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: My MOL Joyce is home Thank you, Courage -- the support you all give here is really precious. I feel guilty because I am so self-centered in all this, but you are all such a big help! Blessings to you, Kate Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > Kate, > > I tip my hat to you and your husband for all that you. > Best to you and your family. > Courage > > My MOL Joyce is home > > > Hi everyone, > Just wanted to let you all know that my MOL Joyce is home with us, > now, and in the middle of her third week here (after about four > months in a nh). Things are c r a z y -- between our work schedules, > the baby (a very happy and bouncy 9 mo old despite all his allergies > to milk, wheat and eggs!), homeschooling schedules (especially with > my high schooler who is taking some college classes and has to be > ferried back and forth), and supervising all her care 24/7. > The hardest thing in this transition has been working through the > medical system; even things the nursing home therapy staff > recommended are beginning to 'fall through' now that we have her at > home -- doctors who won't order the care for her, services that > suddenly aren't available (though they were availalbe when she was in > the nursing home!)....still, all that is to be expected; we're > becoming very accustomed to jumping through hoops! It makes no sense > to us that the 'system' almost forces people to go the nh route; we > have found, over and over again, that you hardly ever seem to get the > same answer twice, or the same care, when you want to look after > someone at home. The worst thing was that we found out the doctor who > was supposedly supervising her care in the nh in reality didn't have > a clue who she was, what meds she was taking, or apparently what LBD > is in the first place. Six days after discharging her, and writing > scripts for all her meds, he demanded to see her again, questioned > her LBD diagnosis, changed her meds (which of course we had just > filled and which had been an established part of her care for years > and viewed and okayed by countless prior doctros!), and declared she > had no need of in home therapy. Wow. We were blown away. Now it is > back to the grindstone trying to find a decent doctor in this town > who will actually understand her situation and work with us (what a > concept!) to get her the quality of care she needs. > The good news is that Joyce is much happier here at home than she was > in the nh, and though she cycles and has her completely off the wall > moments filled with delusions and hallucinations, most of the time we > have managed to maintain calm, and are trying our best to structure > things predictably for her. We just go with the flow, try to keep > her stable and from becoming fearful and upset, and do our best to > take as good care of her as we can. Of course, finances are a huge > issue, especially since my husband has had to return home full time > in order to help juggle everything, but we will do all we can within > those confines. We have some private help coming in to help bathe > her and take care of light housekeeping, and occasional 'adult > sitters'; we are doing okay, though this breakneck speed is very > tiring. > Joyce needs help with everything from getting up and walking to > eating to bathing, so an adult has to be with her all the time. One > thing I have noticed: most days she really just wants to sleep, and > even getting up to bathe and change or to come out and eat with us > tires her out. Her cognition seems to fluctuating sharply, too. The > days her mind is clearer, she is able to get around pretty well and > follow directions; when she is more confused, her motor skills > decline with that -- and when she is delusional and hallucinating, > her motor skills acually do the best of all...that is when she is > most inclined to be up all night, or wander. I do see that her level > of confusion is pretty consistently worse, now, than it was before > she went into the nh after her series of falls. > At any rate, she's here, and we're doing our best to keep up with her > and everything else. I appreciate any insight or helpful hints you > all might have as to her care and our sanity! > Thanks -- Kate > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > (but looking back, she was symptomatic much earlier than that). > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 Dear Donna, Thanks so much! You are right -- she will do better with others, at least for a little while. We finally got Home Health to come in and evaluate her....that is a blessing, and they've been going over with us all the things that are available, including respite. I continue to hope and pray that at least that element in all of this will continue to improve. I think it is the never ending pressure of giving this kind of care, coupled with the unpredictability of lbd, that just wears us down. Blessings to you, Kate Caregiver for MIL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > > > > > Hi everyone, > > > Just wanted to let you all know that my MOL Joyce is home with > us, > > > now, and in the middle of her third week here (after about four > > > months in a nh). Things are c r a z y -- between our work > > schedules, > > > the baby (a very happy and bouncy 9 mo old despite all his > > allergies > > > to milk, wheat and eggs!), homeschooling schedules (especially > with > > > my high schooler who is taking some college classes and has to be > > > ferried back and forth), and supervising all her care 24/7. > > > The hardest thing in this transition has been working through the > > > medical system; even things the nursing home therapy staff > > > recommended are beginning to 'fall through' now that we have her > at > > > home -- doctors who won't order the care for her, services that > > > suddenly aren't available (though they were availalbe when she > was > > in > > > the nursing home!)....still, all that is to be expected; we're > > > becoming very accustomed to jumping through hoops! It makes no > > sense > > > to us that the 'system' almost forces people to go the nh route; > we > > > have found, over and over again, that you hardly ever seem to get > > the > > > same answer twice, or the same care, when you want to look after > > > someone at home. The worst thing was that we found out the doctor > > who > > > was supposedly supervising her care in the nh in reality didn't > > have > > > a clue who she was, what meds she was taking, or apparently what > > LBD > > > is in the first place. Six days after discharging her, and > writing > > > scripts for all her meds, he demanded to see her again, > questioned > > > her LBD diagnosis, changed her meds (which of course we had just > > > filled and which had been an established part of her care for > years > > > and viewed and okayed by countless prior doctros!), and declared > > she > > > had no need of in home therapy. Wow. We were blown away. Now > it > > is > > > back to the grindstone trying to find a decent doctor in this > town > > > who will actually understand her situation and work with us (what > a > > > concept!) to get her the quality of care she needs. > > > The good news is that Joyce is much happier here at home than she > > was > > > in the nh, and though she cycles and has her completely off the > > wall > > > moments filled with delusions and hallucinations, most of the > time > > we > > > have managed to maintain calm, and are trying our best to > structure > > > things predictably for her. We just go with the flow, try to > keep > > > her stable and from becoming fearful and upset, and do our best > to > > > take as good care of her as we can. Of course, finances are a > huge > > > issue, especially since my husband has had to return home full > time > > > in order to help juggle everything, but we will do all we can > > within > > > those confines. We have some private help coming in to help > bathe > > > her and take care of light housekeeping, and occasional 'adult > > > sitters'; we are doing okay, though this breakneck speed is very > > > tiring. > > > Joyce needs help with everything from getting up and walking to > > > eating to bathing, so an adult has to be with her all the time. > > One > > > thing I have noticed: most days she really just wants to sleep, > > and > > > even getting up to bathe and change or to come out and eat with > us > > > tires her out. Her cognition seems to fluctuating sharply, too. > > The > > > days her mind is clearer, she is able to get around pretty well > and > > > follow directions; when she is more confused, her motor skills > > > decline with that -- and when she is delusional and > hallucinating, > > > her motor skills acually do the best of all...that is when she is > > > most inclined to be up all night, or wander. I do see that her > > level > > > of confusion is pretty consistently worse, now, than it was > before > > > she went into the nh after her series of falls. > > > At any rate, she's here, and we're doing our best to keep up with > > her > > > and everything else. I appreciate any insight or helpful hints > you > > > all might have as to her care and our sanity! > > > Thanks -- Kate > > > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > > > (but looking back, she was symptomatic much earlier than that). > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 Dear Kat, Yes. I am tired But I know we all are. Right now, three of the kids are also sick, including the baby, which means times are even more stressful -- and I'm worried about Joyce getting sick too. Most of the time she isn't in direct contact with the children, although they do spend time reading or working in her kitchen to help keep and eye on her. Of them all, I guess I take the baby in there with me most often, because he rides on my hip a lot. The moment you describe with your Mom is so precious -- I am so glad you had that with her and have had your convictions and actions reinforced. I wish we could have that, now and then, from Joyce. She has always had an extraordinarily difficult time with things, and among them with receiving love. She was wounded a lot, in her life, I guess, and she doesn't trust any one -- and of course, LBD just makes that worse. I know what you mean about the inconsistency of aides coming into the home! We've been that route, too, for about a year before she had to go to the hospital because of her falls and ended up in rehab in the nh. She would 'befriend' the aides and get them to do things for her that weren't really good ideas, one stole from her and from us (and ended up with only a slap on the hand from the law for it), she would let them rearrange their schedules....she really doesn't like the idea that my husband and I are have to coordinate and schedule everything, and really has some times done her best to circumvent us. It makes it really hard to take care of someone who generally is, instead of appreciate or grateful, paranoid and resentful. Of course, I know it must be hard to go from being the parent to being the one cared for, and so I try not to get too upset with Joyce. And then the LBD, with the paranoia and delusions, just exacerbates all of that, doesn't it? Thank you for the information about restraints; it may be something we'll need to look at doing. Right now, my husband has been spending a lot of nights on the floor next to her bed. Some nights she doesn't sleep at all, wants to wander, is living out her dreams or delusions or whatever it is that goes on; other nights, she'll sleep and wake every hour on the hour and try to get up; and then there are the nights she'll only get up a few times, or perhaps even only once. We do have a bedtime routine in place, and I have encouraged my husband to use the bedside commode with her at night. That way, he doesn't have to be up as long, and she doesn't like the bedside commode, so perhaps that will disuade her from getting up....but I realize that so much of her reactions are out of her control that that might not make any difference. You are right about there being different stage information out there -- I think there are some posted on this board as well which I have read through; but the stages I was referring to are those identified for Alzheimers/Dementia patients. Though LBD is different from Alzheimers in some major ways, and is not physiologically the same at all, from what I've read in the last stages they are very similar symptomatically. Oh my goodness, your story about the Lifeline and calling the police sounds familiar We have been through that a few times. Joyce used to have an alarm system rigged up on her apartment (really, she didn't have a separate apartment in our home, she just barricaded us out, tried to get a separate address for her 'apartment' -- which wasn't possible since there isn't a separate apartment, lol -- and refused to come out unless it was a birthday or Christmas). We've had the police here several times because of her alarm system, and she's called them herself, too -- once in the dead of night to tell them we were being murdered! We had about seven police cars show up in force to rescue us We currently have a hospital bed for Joyce, with railings, and an intercom she can buzz or talk through; it works pretty well as long as she remembers to use it, or remembers what it is...but more often than not, she does not remember. Yesterday, she did remember to use it a bit, but mostly just to tell me she was in her car and wanted to go home to bed. One thing she's been suffering from a lot lately is not recognizing her room or her bed. Lately, I don't think she recognizing many of us -- and she's been living here in our home, albeit barricaded in about half the time -- for seven years! The hallucinations are so distracting -- you are right. I feel awful for Joyce, whose reality is constantly in flux. Talk about having one's mind messed with. That's why I try to be patient. It is just so hard, some times. Yes, I mean mother in law -- I don't know why I have a habit of writing MOL instead of MIL; I wonder some times if this dementia stuff is catching, because I seem to suffer from the same symptoms more often than I'd like! I hope it is just that I have a lot on my mind and am rushing through everything desperately trying to keep up. Thanks again for all your encouragement and advice, Kat. You are doing such a great job with your Mom:) Blessings, Kate in KY Caregiver for MIL, Joyce: 83, diagnosed with LBD circa 2003/2004 (but looking back, she was symptomatic much earlier than that). > > > > Hi Kate, > > My Dad use to call me Kate. Awesome job! I'm amazed at your > juggling skills. Your Mom seems close to the stage of the disease my > Mom is in. I'm waiting for my Mom to lose steam. She has always had > more energy than I. She is usually sitting up waiting for me at 6am > no matter what time I keep her up to. I have been through the > transistion to home already. The system does appear to want you to > do the nursing home route. I wound up in the fetal position under > the covers after making my first calls for home help. Care varies > from: I'll sit and keep her company to I'll bathe and help use the > toilet. Mom needed bathroom assistance or it wasn't going to work. > She started on a commode. Ugh > > After much research, Dept of Aging helps with the finances for > home care.. There are others like Catholic Charities too. My Mom > goes to daycare M-F from 7:30am - 5:30pm. If you have one near you, > I think the concept is awesome. She calls it work and/or going to > the Center. They held a senior prom for them to dress up and dance. > > I posted earlier on my plan for incontinence. > > Kudos to you for making the effort. In the long run, I think it is > best to keep them close as long as you can. > > It's not the destination. It's the journey. > > Best of luck on your journey. > > Kat > > Caregiver to Mom, Jane, 86, brain stem stroke survivor 2/06, > diagnosed w/ LBD 3/08 > > > > My MOL Joyce is home > > > > > > Hi everyone, > > Just wanted to let you all know that my MOL Joyce is home with us, > > now, and in the middle of her third week here (after about four > > months in a nh). Things are c r a z y -- between our work > schedules, > > the baby (a very happy and bouncy 9 mo old despite all his > allergies > > to milk, wheat and eggs!), homeschooling schedules (especially with > > my high schooler who is taking some college classes and has to be > > ferried back and forth), and supervising all her care 24/7. > > The hardest thing in this transition has been working through the > > medical system; even things the nursing home therapy staff > > recommended are beginning to 'fall through' now that we have her at > > home -- doctors who won't order the care for her, services that > > suddenly aren't available (though they were availalbe when she was > in > > the nursing home!)....still, all that is to be expected; we're > > becoming very accustomed to jumping through hoops! It makes no > sense > > to us that the 'system' almost forces people to go the nh route; we > > have found, over and over again, that you hardly ever seem to get > the > > same answer twice, or the same care, when you want to look after > > someone at home. The worst thing was that we found out the doctor > who > > was supposedly supervising her care in the nh in reality didn't > have > > a clue who she was, what meds she was taking, or apparently what > LBD > > is in the first place. Six days after discharging her, and writing > > scripts for all her meds, he demanded to see her again, questioned > > her LBD diagnosis, changed her meds (which of course we had just > > filled and which had been an established part of her care for years > > and viewed and okayed by countless prior doctros!), and declared > she > > had no need of in home therapy. Wow. We were blown away. Now it is > > back to the grindstone trying to find a decent doctor in this town > > who will actually understand her situation and work with us (what a > > concept!) to get her the quality of care she needs. > > The good news is that Joyce is much happier here at home than she > was > > in the nh, and though she cycles and has her completely off the > wall > > moments filled with delusions and hallucinations, most of the time > we > > have managed to maintain calm, and are trying our best to structure > > things predictably for her. We just go with the flow, try to keep > > her stable and from becoming fearful and upset, and do our best to > > take as good care of her as we can.. Of course, finances are a huge > > issue, especially since my husband has had to return home full time > > in order to help juggle everything, but we will do all we can > within > > those confines. We have some private help coming in to help bathe > > her and take care of light housekeeping, and occasional 'adult > > sitters'; we are doing okay, though this breakneck speed is very > > tiring. > > Joyce needs help with everything from getting up and walking to > > eating to bathing, so an adult has to be with her all the time. One > > thing I have noticed: most days she really just wants to sleep, and > > even getting up to bathe and change or to come out and eat with us > > tires her out. Her cognition seems to fluctuating sharply, too. The > > days her mind is clearer, she is able to get around pretty well and > > follow directions; when she is more confused, her motor skills > > decline with that -- and when she is delusional and hallucinating, > > her motor skills acually do the best of all...that is when she is > > most inclined to be up all night, or wander. I do see that her > level > > of confusion is pretty consistently worse, now, than it was before > > she went into the nh after her series of falls. > > At any rate, she's here, and we're doing our best to keep up with > her > > and everything else. I appreciate any insight or helpful hints you > > all might have as to her care and our sanity! > > Thanks -- Kate > > Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004 > > (but looking back, she was symptomatic much earlier than that). > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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