Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 Dear Kate, Im not sure of the different states and there services but I do know here in Michigan although it toulk me forever to find them, The Area Agency on Aging helps us alot.They pay for some hours with moms care, (Not many but every little bit helps)theyve bought her a hospital bed, they pay for breifs, bed and chair protectors my gloves, and wipes as well as moms lifeline although shes no longer able to even understand what the lifeline necklace is for.I had to do moms papers for medicaid twice this year but finally got it through.I would push them and keep trying to get it..They seem to act like your taking money out of there pocket.But if you get the medicaid through thats what pays for the agency on aging.I hope this helps some.Im truly sorry about your mother in law and everything you are all going through.Heartfelt best wishes and hopes that things improve. Ron 's Dad and Joyce. Help? Hi , I'm so sorry to read about what your dad, and you and your sisters, are going through. What you describe sounds very similar to what we've been experiencing with my mother in law Joyce over recent weeks. I wonder, as you have, if she just hasn't given up and wants it all to end. She has been living with us for seven years, and we've walked the gamut of LBD with her -- most of the hallmarks of the disease we didn't catch until several years ago when it became obvious. In retrospect there were a lot of obvious symptoms, but we just didn't know what was going on until the hallucinations and delusions became full-blown. Last March she had a series of falls and was admitted to the hospital and then to a nursing home for rehab. When her rehab period ended (after about three months) she was admitted to the nursing home, but was only there a week or two when we brought her back home. She hated it there, with a passion. She's been back with us about eight weeks now. At first she did well. Then she began to eat less, drink less, and fall again (this was what she had begun to do before she fell in March). About three weeks ago every time she got upright or sat upright, boom, she would pass out (eyes roll back, mounth clenches and unclenches, hands quiver...sometimes it lasts quite a while; it takes her a while to recover her speech capabilities, and then she has no memory of the episodes). She continues to do this -- some days are better than others, but by in large, this is her pattern. It is to the point where it really does take two adults to help her up and to the bedside commode and back to bed again, although often there is just one of us (my husband and myself are her primary caregivers) here. To be honest, the last few weeks have been back breaking and exhausting (we also have four children whom we homeschool -- the eldest is fifteen, and taking some college classes as well as her homeschool workload, and she has a job accompanying a local high school choir on piano, so we drive her around and about a lot -- and the youngest is almost 11 months old; my husband is self-employed, so that does thankfully allow some flexibility with his schedule, but we still have to try to make ends meet so he has to work, and we simply cannot afford to hire help to come in most of the time. Just making sure one or the other of us is at home with Joyce 24/7 is a difficult task, and has resulted in my being pretty much homebound a significant amount of the time). Sometimes she is able to walk to her table to eat, or go to the bathroom, but it is nerve wracking as she is so unsteady and will pass out at the drop of a hat; when I am here with no other adult, I usually will not walk her very far for fear she will fall and seriously hurt herself. I can pick her up by myself, but it sure is not easy. In the evening we use a wheelchair and she comes to our dinner table to eat with us. We had her checked for UTI (twice, actually, within the last two weeks - once we had a lab come in and pick up a sample, and the second time we called and ambulance to take her to the ER. Both tests were negative for UTI -- we called the ambulance because even though it wasn't an 'emergency' per se, she absolutely had no mobility at that point and was not even able to sit upright without passing out), Her meds have not changed, and at the hospital they checked blood, did a cat scan, etc....all to no avail. Just blood pressure fluctuations, they said. And, they sent her home with no specific instructions. We are pretty much on our own with her -- hospice isn't applicable at this time, they tell us she makes too much income to qualify for in home health or respite (although she qualified for medicaid in the nh, so why she doesn't qualify here at home is truly beyond me), so anything we do is private pay. She was sleeping a lot just prior to this decline, but lately she just wants to lie in a dark room (the tv bothers her, she says people being in there with her bother her, and bright lights are disturbing to her). She's not much interested in eating, and there are times we do have to hand feed her. Physically she's taken a dramatic downturn (her balance is nonexistence, her back it twisted much more significantly, even, that it was a few months ago, and she doesn't really remember what to do with her body parts to get them moving), but ironically (at least it seems so to me) her mind is clearer (she still is confused, unable to reason very well, and can't keep track of her location), and the delusions and hallucinations seem to have taken a back seat. She is very weak physically, and seems to be just 'existing'. Our dilemma now is how best to care for her, since the medical establishment seems to have essentially washed its hands of her. She says she has abdominal pain, and feels like she has to urinate often (though when she tries she often doesn't). Sometimes she indicates her chest hurts, but this doesn't last and the pain doesn't continue. She says she is feeling sick all the time. But, as I said earlier, the hospital didn't find anything of note, and her physician does not seem to have any insight in to her condition -- granted, this is not his speciality, but he is the best doctor we could locate in our area who would listen to us about her LBD, the meds, and so on. The other physicians we worked with just glanced at her for three minutes, fiddled with her meds and sent her home. At least this doctor listens and seems to have some compassion (though he isn't much 'real' help -- perhaps we are past 'real' help). My heart breaks for Joyce because I hate to see her suffer, and I can see no way to alleviate her situation. We are here for her to help her in whatever way we can, but it is so discouraging that there doesn't seem to be anything we can do. Nor is the medical establishment being very helpful. I have been doing some of my own research online, and have read that LBD patients do have abdominal pain, cramping, and fainting as part of the physiology of the disease. But what to do about it, I have no idea. Do any of you have recommendations about what we can do for Joyce? As I said, we live in a small town, no geriatric doctors, most physicians, nurses and aides are unfamiliar with LBD, and services are limited. What is available is through medicare -- and we have been told Joyce won't qualify and will in fact owe a penalty if we apply. I can't figure out why the nursing home receives funds for her, but we cannot receive services for her, except that the nursing homes must have some pretty powerful lobbying power in our state house. Some one is sure profiting from this situation -- but it isn't Joyce. It is sad, that she wanted to come home so badly, and she is home now, but her medical providers are distant and basically unconcerned (of course, I'm not so sure how concerned or caring they were in the nh either). We're doing our best, but it is draining all of us and spreading us thin. Thanks for any advice from the group, and : our prayers will be with you and your dad. In Him, Kate in KY Caregiver for MIL Joyce, diagnosed with LBD ************ **New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out (http://local. mapquest. com/?ncid= emlcntnew0000000 2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 Hi Gladys -- she is 83 (she'll be 84 in April). We were told by in home health (before they discharged her because they said medicaid/medicare would no longer cover her) that she could be eligible for hospice for up to three years and that they would have hospice contact us. Hospice hasn't done so as yet. We did contact a friend who knew someone in hospice and that individual said a dr had to give her a 6 mo to live prognosis before hospice could come in. Don't know which story is right. Currently, neither her doctor nor the hospital dr that recently evaluated her said anything about her being near the end, even though it is difficult to get her to eat, keep her hydrated, etc...the only thing we know for sure is that her blood pressure drops significantly when she is upright, causing her to faint. Thanks - Kate > > Kate, > > How old is your MIL? Does she qualify for hospice? > > Gladys > > -- Re: 's Dad and Joyce. Help? > > Hi Ron, > Thanks for your advice and encouragement I will continue to check with > our different agencies, but I'm beginning to lose any hope of getting any > where. We are told that although she qualified for medicaid in the nh and > was > admitted, now that she is at home she will lose her medicaid card. To date > we > have never received the card, nor have we received a letter telling us that > we are losing the card. Who knows what the heck is going on We can't seem > to > get a coherent answer from any one on what services she qualifies for, > except the clear answer that she isn't eligible for anything under medicare > and > that medicaid is no longer an option. Again, how she can be eligible in > the nh > but not eligible here escapes me. She has been evaluated by in home health > and by social workers and by doctors and they all say she qualifies in > every > single category. She just has too large an income -- but it isn't a large > enough income to pay for much assistance via private pay; we're the last > people > to expect a handout, but it just doesn't seem fair that a nh can take all > her income, get an additional 2 grand for services, and basically let her > lie in > a room all day with very little attention given while we, who are trying > to > give her some quality of life in a caring home environment can't access > even > a lab service without paying an arm and a leg. However, we are glad we can > afford some help for her and are grateful there are enough funds for that. > Nights are the worst, really. We followed Kat's advice and have been > restraining her (gently with a lap belt) at night and using diapers....so we > ve > gotten better sleep for about a week. But, this morning, we found that she > had > managed to get 'under' the lap belt, take off the diaper, and start getting > up > on her own; that is disastrous -- she already has bruised and cut her chest, > busted up her chin, and banged up her right cheek because she keeps trying > to > get up on her own. No matter what we say, she can't understand that she > needs to have help. Again, she was evaluated at the hospital -- but they > had no > recommendations for us. We have her on an intercom, with a call button, as > well as a portable alarm that makes an awful unmistakable sound when it > goes > off when she tries to get up on her own...but somehow she manages every now > and then to move just right so we don't hear anything, the alarm doesn't go > off, and she doesn't buzz and boom, she's out. It is hard to be ever > vigilant > with her -- we have a lot going on, and even with checking on her > frequently > and even restraining her at night she slips through and something happens. > We are almost at wits end trying to protect her and provide the medical > care > she needs. It is difficult. But, I know you all know that:) > Ron, glad to see you posting again, and thanks so much for your tips. You > and your Mom are in my prayers. > Kate in KY > Care-giver for MIL Joyce, diagnosed with LBD > > > > > **************New MapQuest Local shows what's happening at your destination. > Dining, Movies, Events, News & more. Try it out > (http://local.mapquest.com/?ncid=emlcntnew00000002) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 Hi Gladys -- she is 83 (she'll be 84 in April). We were told by in home health (before they discharged her because they said medicaid/medicare would no longer cover her) that she could be eligible for hospice for up to three years and that they would have hospice contact us. Hospice hasn't done so as yet. We did contact a friend who knew someone in hospice and that individual said a dr had to give her a 6 mo to live prognosis before hospice could come in. Don't know which story is right. Currently, neither her doctor nor the hospital dr that recently evaluated her said anything about her being near the end, even though it is difficult to get her to eat, keep her hydrated, etc...the only thing we know for sure is that her blood pressure drops significantly when she is upright, causing her to faint. Thanks - Kate > > Kate, > > How old is your MIL? Does she qualify for hospice? > > Gladys > > -- Re: 's Dad and Joyce. Help? > > Hi Ron, > Thanks for your advice and encouragement I will continue to check with > our different agencies, but I'm beginning to lose any hope of getting any > where. We are told that although she qualified for medicaid in the nh and > was > admitted, now that she is at home she will lose her medicaid card. To date > we > have never received the card, nor have we received a letter telling us that > we are losing the card. Who knows what the heck is going on We can't seem > to > get a coherent answer from any one on what services she qualifies for, > except the clear answer that she isn't eligible for anything under medicare > and > that medicaid is no longer an option. Again, how she can be eligible in > the nh > but not eligible here escapes me. She has been evaluated by in home health > and by social workers and by doctors and they all say she qualifies in > every > single category. She just has too large an income -- but it isn't a large > enough income to pay for much assistance via private pay; we're the last > people > to expect a handout, but it just doesn't seem fair that a nh can take all > her income, get an additional 2 grand for services, and basically let her > lie in > a room all day with very little attention given while we, who are trying > to > give her some quality of life in a caring home environment can't access > even > a lab service without paying an arm and a leg. However, we are glad we can > afford some help for her and are grateful there are enough funds for that. > Nights are the worst, really. We followed Kat's advice and have been > restraining her (gently with a lap belt) at night and using diapers....so we > ve > gotten better sleep for about a week. But, this morning, we found that she > had > managed to get 'under' the lap belt, take off the diaper, and start getting > up > on her own; that is disastrous -- she already has bruised and cut her chest, > busted up her chin, and banged up her right cheek because she keeps trying > to > get up on her own. No matter what we say, she can't understand that she > needs to have help. Again, she was evaluated at the hospital -- but they > had no > recommendations for us. We have her on an intercom, with a call button, as > well as a portable alarm that makes an awful unmistakable sound when it > goes > off when she tries to get up on her own...but somehow she manages every now > and then to move just right so we don't hear anything, the alarm doesn't go > off, and she doesn't buzz and boom, she's out. It is hard to be ever > vigilant > with her -- we have a lot going on, and even with checking on her > frequently > and even restraining her at night she slips through and something happens. > We are almost at wits end trying to protect her and provide the medical > care > she needs. It is difficult. But, I know you all know that:) > Ron, glad to see you posting again, and thanks so much for your tips. You > and your Mom are in my prayers. > Kate in KY > Care-giver for MIL Joyce, diagnosed with LBD > > > > > **************New MapQuest Local shows what's happening at your destination. > Dining, Movies, Events, News & more. Try it out > (http://local.mapquest.com/?ncid=emlcntnew00000002) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 Kate - a NH can also recommend hospice should you be interested. In the files section: http://health.groups.yahoo.com/group/LBDcaregivers/files/ there's a document that lists the criteria for hospice: hospcie_1_.pdf List of Hospice Criteria > > Hi Gladys -- she is 83 (she'll be 84 in April). We were told by in > home health (before they discharged her because they said > medicaid/medicare would no longer cover her) that she could be > eligible for hospice for up to three > years and that they would have hospice contact us. Hospice hasn't > done so as yet. We did contact a friend who knew someone in hospice > and that individual said a dr had to give her a 6 mo to live > prognosis before hospice could come in. Don't know which story is > right. Currently, neither her doctor nor the hospital dr that > recently evaluated her said anything about her being near the end, > even though it is difficult to get her to eat, keep her hydrated, > etc...the only thing we know for sure is that her blood pressure > drops significantly when she is upright, causing her to faint. > Thanks - Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 RE: My hospice comment - I see I spoke out of turn - that in fact your MIL is home... <snip> I can't figure out why the nursing home receives funds for her, but we cannot receive services for her, except that the nursing homes must have some pretty powerful lobbying power in our state house. Some one is sure profiting from this situation -- but it isn't Joyce. It is sad, that she wanted to come home so badly, and she is home now, but her medical providers are distant and basically unconcerned (of course, I'm not so sure how concerned or caring they were in the nh either). We're doing our best, but it is draining all of us and spreading us thin. Thanks for any advice from the group, and : our prayers will be with you and your dad. > In Him, > Kate in KY > Caregiver for MIL Joyce, diagnosed with LBD <snip> Here is the info re: elder care agencies in KY - maybe someone can help pay for in-home services for you: Kentucky http://chfs.ky.gov/agencies/os/dail/familycaregiver.htm KENTUCKY Carol Hall Department of Aging Services 275 East Main Street fort, KY 40621 Fax: carol.hall@... Also... from 211 http://www.211.org/ METRO UNITED WAY 2-1-1 (KENTUCKY) Alternative Number 211 Call 2-1-1 from service area Alternative Number2-1-1 information, referral and crisis intervention services for the following counties in Kentucky: Bullitt, Carroll, Henry, Jefferson, , Oldham, Shelby, Spencer, and Trimble. Also serves the following counties in Indiana: , Floyd and on. UNITED WAY 2-1-1 (GREATER LEXINGTON) (KENTUCKY) Alternative Number 211 Call 2-1-1 from service area Alternative Number2-1-1 information and referral service for the following counties in Kentucky: , Bourbon, , Fayette, Jessamine, Madison, Montgomery, and Woodford. UNITED WAY 211 (GREATER CINCINNATI) (OHIO/KENTUCKY) Alternative Number Alternative Number 211 Call 2-1-1 from service area2-1-1 information and referral service for the following Kentucky counties: Boone, , Grant, and Kenton; Also serves the following counties in Ohio: Brown, Clermont, and Hamilton. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 Thank you I'll check into it. > > RE: My hospice comment - I see I spoke out of turn - that in fact > your MIL is home... > <snip> I can't figure out why the nursing home receives funds for > her, but we cannot receive services for her, except that the nursing > homes must have some pretty powerful lobbying power in our state > house. Some one is sure profiting from this situation -- but it > isn't Joyce. It is sad, that she wanted to come home so badly, and > she is home now, but her medical providers are distant and basically > unconcerned (of course, I'm not so sure how concerned or caring they > were in the nh either). We're doing our best, but it is draining > all of us and spreading us thin. Thanks for any advice from the > group, and : our prayers will be with you and your dad. > > In Him, > > Kate in KY > > Caregiver for MIL Joyce, diagnosed with LBD <snip> > > Here is the info re: elder care agencies in KY - maybe someone can > help pay for in-home services for you: > > Kentucky > http://chfs.ky.gov/agencies/os/dail/familycaregiver.htm > > KENTUCKY > Carol Hall > Department of Aging Services > 275 East Main Street > fort, KY 40621 > > Fax: > carol.hall@... > > Also... > from 211 > http://www.211.org/ > > METRO UNITED WAY 2-1-1 (KENTUCKY) Alternative Number > 211 Call 2-1-1 from service area > Alternative Number2-1-1 information, referral and > crisis intervention services for the following counties in Kentucky: > Bullitt, Carroll, Henry, Jefferson, , Oldham, Shelby, Spencer, > and Trimble. Also serves the following counties in Indiana: , > Floyd and on. > > UNITED WAY 2-1-1 (GREATER LEXINGTON) (KENTUCKY) > Alternative Number > 211 Call 2-1-1 from service area > Alternative Number2-1-1 information and referral > service for the following counties in Kentucky: , Bourbon, > , Fayette, Jessamine, Madison, Montgomery, and Woodford. > > UNITED WAY 211 (GREATER CINCINNATI) (OHIO/KENTUCKY) > Alternative Number > Alternative Number > 211 Call 2-1-1 from service area2-1-1 information and referral > service for the following Kentucky counties: Boone, , Grant, > and Kenton; Also serves the following counties in Ohio: Brown, > Clermont, and Hamilton. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2008 Report Share Posted October 11, 2008 Dear Gladys, On your recommendation, I've contacted hospice and they will hopefully come out and evaluate early next week. I think Joyce's dr will be open to okaying this -- although when she saw him last she was still ambulatory with assistance. Now, she can't walk much at all, either from weakness or because of the fainting episodes. I'm glad to hear that they can re-evaluate after six months. I feel she really needs more informed care than just my husband and myself at this point, although we're trying our hardest. We already have a hospital bed, commode, walker, wheelchair...everything. That was covered when she left the nh. The nh also ordered in home health, but I guess they are restricted in our state to only a certain number of visits. Once we were finished with that, there were no other options. We just can't get any medical or respite care for her right now. She is so weak now that I can't imagine hospice will turn her down, though I could be surprised. Thanks again for all of your help, and the advice of every one on the board. Hope you are having a good weekend, Kate in KY Care-giver for MIL Joyce, diagnosed with LBD > > > > Kate, > > > > How old is your MIL? Does she qualify for hospice? > > > > Gladys > > > > -- Re: 's Dad and Joyce. Help? > > > > Hi Ron, > > Thanks for your advice and encouragement I will continue to > check with > > our different agencies, but I'm beginning to lose any hope of > getting any > > where. We are told that although she qualified for medicaid in the > nh and > > was > > admitted, now that she is at home she will lose her medicaid card. > To date > > we > > have never received the card, nor have we received a letter telling > us that > > we are losing the card. Who knows what the heck is going on We > can't seem > > to > > get a coherent answer from any one on what services she qualifies > for, > > except the clear answer that she isn't eligible for anything under > medicare > > and > > that medicaid is no longer an option. Again, how she can be > eligible in > > the nh > > but not eligible here escapes me. She has been evaluated by in > home health > > and by social workers and by doctors and they all say she > qualifies in > > every > > single category. She just has too large an income -- but it isn't > a large > > enough income to pay for much assistance via private pay; we're the > last > > people > > to expect a handout, but it just doesn't seem fair that a nh can > take all > > her income, get an additional 2 grand for services, and basically > let her > > lie in > > a room all day with very little attention given while we, who are > trying > > to > > give her some quality of life in a caring home environment can't > access > > even > > a lab service without paying an arm and a leg. However, we are > glad we can > > afford some help for her and are grateful there are enough funds > for that. > > Nights are the worst, really. We followed Kat's advice and have > been > > restraining her (gently with a lap belt) at night and using > diapers....so we > > ve > > gotten better sleep for about a week. But, this morning, we found > that she > > had > > managed to get 'under' the lap belt, take off the diaper, and start > getting > > up > > on her own; that is disastrous -- she already has bruised and cut > her chest, > > busted up her chin, and banged up her right cheek because she keeps > trying > > to > > get up on her own. No matter what we say, she can't understand > that she > > needs to have help. Again, she was evaluated at the hospital -- > but they > > had no > > recommendations for us. We have her on an intercom, with a call > button, as > > well as a portable alarm that makes an awful unmistakable sound > when it > > goes > > off when she tries to get up on her own...but somehow she manages > every now > > and then to move just right so we don't hear anything, the alarm > doesn't go > > off, and she doesn't buzz and boom, she's out. It is hard to be > ever > > vigilant > > with her -- we have a lot going on, and even with checking on her > > frequently > > and even restraining her at night she slips through and something > happens. > > We are almost at wits end trying to protect her and provide the > medical > > care > > she needs. It is difficult. But, I know you all know that:) > > Ron, glad to see you posting again, and thanks so much for your > tips. You > > and your Mom are in my prayers. > > Kate in KY > > Care-giver for MIL Joyce, diagnosed with LBD > > > > > > > > > > **************New MapQuest Local shows what's happening at your > destination. > > Dining, Movies, Events, News & more. Try it out > > (http://local.mapquest.com/?ncid=emlcntnew00000002) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 I don't understand this.... my mom has qualified for Home Health care for almost a year now. Are you sure that Medicare said they would not approve her? About every 12 weeks Home Health faxes her Dr. for approval, which he always signs off on, and home health will bill Medicare. I hope we never loose them, although I know, realistically, we probably won't get to keep them forever. Mother just loves Nora, the aid that comes and helps her shower three times a week. Nora styles her hair, too, and makes mom feel so good. I take her every other week to get a mini-manicure and about once a month for a mini-pedicure. She likes to sit in those massage chairs. Hugs, Pammie In a message dated 10/11/2008 8:34:06 P.M. Central Daylight Time, LBDcaregivers writes: this point, although we're trying our hardest. We already have a hospital bed, commode, walker, wheelchair..hospital bed, comm covered when she left the nh. The nh also ordered in home health, but I guess they are restricted in our state to only a certain number of visits. Once we were finished with that, there were no other options. We just can't get any medical or respite care for her right now. She is so weak now that I can't imagine hospice will turn her down, though I could be surprised. **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out (http://local.mapquest.com/?ncid=emlcntnew00000002) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.