Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Darlene, An argument for her staying where she is now is that moving them only usually causes more confusion. The less you have to move them the better. Don't tell her where she is! Mom always thought she was " in the hospital. " It is her short term memory that is gone so anything that is " gone " someone must have stolen. It is the only thing that makes sense in their mind. I would hope that her long term care Insurance? would take her several years and it would be best if you have a nh that takes Medicaid so that she can stay where she is after it runs out. With the right " cocktail " of drugs, she should be able to have her behavior controlled. Otherwise you may be looking at a UTI when she acts out a lot.. (Urinary Track Infection.) Where you have her now will work best if YOU believe it is best for her. She can't make decisions for herself any more. And your confidence about where she is will translate to her and she will get more comfortable. It really doesn't sound like she has the ability to live alone any more from your description even if she can do some of her own things. We have one person who had their MD write a letter to go with her POA that says your Mom can't make her own decisions any more. That really helped eliminate her ability to take the POA away. These are some of my thoughts and hope they help you make a decision none of us like to make. Hugs, Donna R Caregiver for Mom for 3 years and 4th year in a nh. (In MI) She was almost 89 when she died in '02. No dx other than mine. New to group My mother was diagnosed with dementia in October but upon looking back, I can now see she's had this insidious problem for many years. She has always had a volatile personality and distorted thinking all my life so when this began, I did not recognize it at all. Her husband is in an nursing home in the last stages of dementia. I need help in making a serious decision and it has to be made in the next week. I can leave my mother in long term care at the nursing home where she is getting great care (bathing, hair done, nails, toenails, etc., which she had neglected doing) wherein she'll lose all she has, including her home, or put her in an apartment with some in home care. The problem is my mother shuts people out. She had totally isolated herself in her home (200 miles away.now I've moved her to a nursing home 10 minutes from me) and has an extremely volatile temper. She can be calm one minute and then threatening to kill people the next, and also is extremely paranoid. In the nursing home she's finally on medication which has drastically reduced these tendencies and actually, for the first time in twenty years, seems content and peaceful, although she does go on rages wanting to go home. Whenever I see her she wants to go home. Sometimes she chases me down the hall in her wheelchair accusing me and my husband of stealing everything from her. When she lived at home, she accused the neighbor of sneaking in and stealing from her, like her panties, nightgowns, drinking her wine and stealing her pepsi. Before him she thought my son was tunneling under her house, and prior to that she thought it was her husband's daughter and grandson who were stealing from her. She has, all my life, been a paranoid person so this was nothing new to me. IF I put her in an apartment, as she can do the self care things like go to the bathroom and dress herself, I am worried she might not take the meds as needed. Also, that she might shut out any in home care providers, or even myself, but shouldn't I at least give her a chance and she is still in the early stages of dementia; her short term memory is shot. She doesn't remember the major surgery she had in October, nor any other surgeries. Well, I could go on and on but I am at wits end. If she gets wind that she might be in a nursing home for long term care she will go totally ballistic and might revoke my durable power of attorney. To go for guardianship is just too costly as it takes money to file, and more money to pay the ad litum attorney. She cannot go back to her house. She mortgaged her house, which was paid off, failed to pay the taxes, has a judgment against her, and spent every dime and more on QVC and HSN. Not to mention the house is a mess and needs at least $15,000 to bring it up to code. We would have to let the house go into foreclosure. This has been a nightmare and put me on an emotional roller coaster I just cannot believe, and am having a hard time handling, making me literally sick. My husband does not want her to live with us as she has a strong personality and can be so angry being physically and emotionally abusive. On the flip side she can be the nicest person you'd ever want to meet. Long term is ok if that is what is best for her but I know she doesn't want to be there. I am going to look at an apartment tomorrow, but again, what would I do if things did not go right? Any suggestions from anyone who understands this horrendous problem is so welcome. I am just beside myself and it's causing great distress in my marriage of only four years. Thanks, Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Hi Darlene, A big warm welcome from Texas. My suggestion is to LEAVE your mother in the nursing home. My husband cries nearly every day to go home. They all do that. It is sad, but it is one thing we can't fix. We- the caregiver- have to learn to live with the begging and fussing, until they settle down. I wanted to take my husband out five or six times. I was really upset for him. DON'T allow yourself to feel so much. Say, this has to be done, and leave it at that. They will settle down in time. If you put your mother in an apartment, she will be back in a nursing home in no time. And, still have to go through getting adjusted. Save yourself all the agitation, and worry of moving her. So very sorry, Darlene, be brave and strong (yeah right! tell yourself, Imogene) Hang in here with the group and be ready to accept some wonderful help. Love a lot, does a body good, Imogene In a message dated 1/12/2009 1:09:40 AM Central Standard Time, darlenej@... writes: My mother was diagnosed with dementia in October but upon looking back, I can now see she's had this insidious problem for many years. She has always had a volatile personality and distorted thinking all my life so when this began, I did not recognize it at all. Her husband is in an nursing home in the last stages of dementia. I need help in making a serious decision and it has to be made in the next week. I can leave my mother in long term care at the nursing home where she is getting great care (bathing, hair done, nails, toenails, etc., which she had neglected doing) wherein she'll lose all she has, including her home, or put her in an apartment with some in home care. The problem is my mother shuts people out. She had totally isolated herself in her home (200 miles away.now I've moved her to a nursing home 10 minutes from me) and has an extremely volatile temper. She can be calm one minute and then threatening to kill people the next, and also is extremely paranoid. In the nursing home she's finally on medication which has drastically reduced these tendencies and actually, for the first time in twenty years, seems content and peaceful, although she does go on rages wanting to go home. Whenever I see her she wants to go home. Sometimes she chases me down the hall in her wheelchair accusing me and my husband of stealing everything from her. When she lived at home, she accused the neighbor of sneaking in and stealing from her, like her panties, nightgowns, drinking her wine and stealing her pepsi. Before him she thought my son was tunneling under her house, and prior to that she thought it was her husband's daughter and grandson who were stealing from her. She has, all my life, been a paranoid person so this was nothing new to me. IF I put her in an apartment, as she can do the self care things like go to the bathroom and dress herself, I am worried she might not take the meds as needed. Also, that she might shut out any in home care providers, or even myself, but shouldn't I at least give her a chance and she is still in the early stages of dementia; her short term memory is shot. She doesn't remember the major surgery she had in October, nor any other surgeries. Well, I could go on and on but I am at wits end. If she gets wind that she might be in a nursing home for long term care she will go totally ballistic and might revoke my durable power of attorney. To go for guardianship is just too costly as it takes money to file, and more money to pay the ad litum attorney. She cannot go back to her house. She mortgaged her house, which was paid off, failed to pay the taxes, has a judgment against her, and spent every dime and more on QVC and HSN. Not to mention the house is a mess and needs at least $15,000 to bring it up to code. We would have to let the house go into foreclosure. This has been a nightmare and put me on an emotional roller coaster I just cannot believe, and am having a hard time handling, making me literally sick. My husband does not want her to live with us as she has a strong personality and can be so angry being physically and emotionally abusive. On the flip side she can be the nicest person you'd ever want to meet. Long term is ok if that is what is best for her but I know she doesn't want to be there. I am going to look at an apartment tomorrow, but again, what would I do if things did not go right? Any suggestions from anyone who understands this horrendous problem is so welcome. I am just beside myself and it's causing great distress in my marriage of only four years. Thanks, Darlene **************New year...new news. Be the first to know what is making headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Darlene, My heart goes out to you at this time. From what you have said it sounds like Mom is better off staying where she is. I know all about the financial stresses it only makes matters worse.In my opinion You are right, for now it sounds like staying where she is is the best option in every sence. Just a word of advice, please stay in contact with her. Pay attention to what goes on and ask the NH to keep you informed as to any changes in medication. All too often NH's use meds that only make the patient worse. You know your mom better than anyone so stick to your guns if you notice something that does not seem quite right. I only say this because of the horrible experience I have had with NH's. There are some good ones out there though and it sounds like your mom is doing better from being there. Stop by at different times when they are not expecting you and let them see that you are involved. As long as you stay involved hopefully things will continue to be ok. Just assure your mom that you love her and are looking out for her best interests. Maybe if possible you can eventually have her come home every now and then for family visits. Try and help her to make friends with some of the other patients. Good luck, sorry you are going through this. Please keep us informed. Shirley Mom diagnosed with Lewybody Jan 2002, Laid to Rest Dec 2004 age 77 Dad diagnosed with Cancer March 2008, Laid to Rest June 2008 age 81 > > My mother was diagnosed with dementia in October but upon looking back, I > can now see she's had this insidious problem for many years. She has always > had a volatile personality and distorted thinking all my life so when this > began, I did not recognize it at all. Her husband is in an nursing home in > the last stages of dementia. > > > > I need help in making a serious decision and it has to be made in the next > week. > > > > I can leave my mother in long term care at the nursing home where she is > getting great care (bathing, hair done, nails, toenails, etc., which she had > neglected doing) wherein she'll lose all she has, including her home, or put > her in an apartment with some in home care. > > > > The problem is my mother shuts people out. She had totally isolated herself > in her home (200 miles away.now I've moved her to a nursing home 10 minutes > from me) and has an extremely volatile temper. She can be calm one minute > and then threatening to kill people the next, and also is extremely > paranoid. In the nursing home she's finally on medication which has > drastically reduced these tendencies and actually, for the first time in > twenty years, seems content and peaceful, although she does go on rages > wanting to go home. Whenever I see her she wants to go home. Sometimes she > chases me down the hall in her wheelchair accusing me and my husband of > stealing everything from her. When she lived at home, she accused the > neighbor of sneaking in and stealing from her, like her panties, nightgowns, > drinking her wine and stealing her pepsi. Before him she thought my son was > tunneling under her house, and prior to that she thought it was her > husband's daughter and grandson who were stealing from her. She has, all my > life, been a paranoid person so this was nothing new to me. > > > > IF I put her in an apartment, as she can do the self care things like go to > the bathroom and dress herself, I am worried she might not take the meds as > needed. Also, that she might shut out any in home care providers, or even > myself, but shouldn't I at least give her a chance and she is still in the > early stages of dementia; her short term memory is shot. She doesn't > remember the major surgery she had in October, nor any other surgeries. > > > > Well, I could go on and on but I am at wits end. If she gets wind that she > might be in a nursing home for long term care she will go totally ballistic > and might revoke my durable power of attorney. To go for guardianship is > just too costly as it takes money to file, and more money to pay the ad > litum attorney. > > > > She cannot go back to her house. She mortgaged her house, which was paid > off, failed to pay the taxes, has a judgment against her, and spent every > dime and more on QVC and HSN. Not to mention the house is a mess and needs > at least $15,000 to bring it up to code. We would have to let the house go > into foreclosure. > > > > This has been a nightmare and put me on an emotional roller coaster I just > cannot believe, and am having a hard time handling, making me literally > sick. My husband does not want her to live with us as she has a strong > personality and can be so angry being physically and emotionally abusive. > On the flip side she can be the nicest person you'd ever want to meet. > > > > Long term is ok if that is what is best for her but I know she doesn't want > to be there. I am going to look at an apartment tomorrow, but again, what > would I do if things did not go right? > > > > Any suggestions from anyone who understands this horrendous problem is so > welcome. I am just beside myself and it's causing great distress in my > marriage of only four years. > > > > Thanks, > > > > Darlene > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Darlene my situation with my mother was similar to yours in a lot of ways. I don't have the time to write a whole lot right now, but leaving her in the nursing home was the best choice for her also. However, I didn't tell her it was a permanent placement. Well, at first I did...but she went ballistic. So when she talked about " getting out of here " I would say something like, " It would be so nice if you got well enough to leave " or " As soon as your doctor says it's ok " or something like that. Nothing that would lead her on to believe she was going home any day now, but always to delay any commitment, then redirect - and when I'd redirect I did so with an attitude of, " There, we've got that subject covered, let's move on " so it would feel natural. After some months she thought of it as home and no longer remembered her house, and even looked to the routine and people there as her security, wanting to " go home " after outings, and hugging the nurses and aids upon her return. I have to concur with the other wise advice you've gotten here. Moving her now could make things worse, in many ways, in the future. Especially since she's got a spot in a good place (as is my mom)...you don't want to take a chance on losing that when she'd have to be moved back in at some point down the road. I want to address the house issue: same thing with my mom. My grandmother had bought her her home, she had no mortgage, but when she went into the NH and my sister and I were able to go through her papers, we found that she was in debt well into the 5 figures, most of it going to QVC, and she had a $75k+ lein on the house to the IRS, plus a smaller lein for YEARS' worth of unpaid property taxes! I was easily awarded guardianship, and my sister is her DPOA and handles her business and finances. Because of my mother's condition, my sister was able to SAVE my mom's house, she went up against the IRS and HAD THE LEIN REMOVED, and had ALL of her debts GONE! And, she saved the house, LITERALLY, 48 hours before the sheriff's sale!!!!!! One other thing: if your mom gave you a DPOA, it was to take care of things in a situation like this. That's why it is durable. If she were to try and remove you at this point, with her dementia diagnosis, she would fail. Because she gave you the DPOA to take care of things IF she became ill - now that she IS ill, that's the whole purpose. No judge would revoke a DPOA that was made when she was in her right mind, now that she has dementia. Don't worry about that. You could even go a step further and get guardianship. There are a few situations that my sister has tried to resolve that they wouldn't accept a DPOA, and required the signature of a guardian...if you decide to try and save her house, you may run up against that also... Anyway, I have to get back to work, but wanted to share a bit to let you know that things can be done, they can be accomplished, and it sounds like you are doing the best you can for your mom right now. Best to you, His, Sherry www.owly.net daughter of , (mis?)diagnosed with AD in 2005, descent slowed by Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my house. We're learning to live with Lewy... ----- Original Message ----- > My mother was diagnosed with dementia in October but upon looking back, I > can now see she's had this insidious problem for many years. She has > always > had a volatile personality and distorted thinking all my life so when this > began, I did not recognize it at all. Her husband is in an nursing home > in > the last stages of dementia. > > I need help in making a serious decision and it has to be made in the next > week. > > I can leave my mother in long term care at the nursing home where she is > getting great care (bathing, hair done, nails, toenails, etc., which she > had > neglected doing) wherein she'll lose all she has, including her home, or > put > her in an apartment with some in home care. > > The problem is my mother shuts people out. She had totally isolated > herself > in her home (200 miles away.now I've moved her to a nursing home 10 > minutes > from me) and has an extremely volatile temper. She can be calm one minute > and then threatening to kill people the next, and also is extremely > paranoid. In the nursing home she's finally on medication which has > drastically reduced these tendencies and actually, for the first time in > twenty years, seems content and peaceful, although she does go on rages > wanting to go home. Whenever I see her she wants to go home. Sometimes > she > chases me down the hall in her wheelchair accusing me and my husband of > stealing everything from her. When she lived at home, she accused the > neighbor of sneaking in and stealing from her, like her panties, > nightgowns, > drinking her wine and stealing her pepsi. Before him she thought my son > was > tunneling under her house, and prior to that she thought it was her > husband's daughter and grandson who were stealing from her. She has, all > my > life, been a paranoid person so this was nothing new to me. > > IF I put her in an apartment, as she can do the self care things like go > to > the bathroom and dress herself, I am worried she might not take the meds > as > needed. Also, that she might shut out any in home care providers, or even > myself, but shouldn't I at least give her a chance and she is still in the > early stages of dementia; her short term memory is shot. She doesn't > remember the major surgery she had in October, nor any other surgeries. > > Well, I could go on and on but I am at wits end. If she gets wind that > she > might be in a nursing home for long term care she will go totally > ballistic > and might revoke my durable power of attorney. To go for guardianship is > just too costly as it takes money to file, and more money to pay the ad > litum attorney. > > She cannot go back to her house. She mortgaged her house, which was paid > off, failed to pay the taxes, has a judgment against her, and spent every > dime and more on QVC and HSN. Not to mention the house is a mess and > needs > at least $15,000 to bring it up to code. We would have to let the house > go > into foreclosure. > > This has been a nightmare and put me on an emotional roller coaster I just > cannot believe, and am having a hard time handling, making me literally > sick. My husband does not want her to live with us as she has a strong > personality and can be so angry being physically and emotionally abusive. > On the flip side she can be the nicest person you'd ever want to meet. > > Long term is ok if that is what is best for her but I know she doesn't > want > to be there. I am going to look at an apartment tomorrow, but again, what > would I do if things did not go right? > > Any suggestions from anyone who understands this horrendous problem is so > welcome. I am just beside myself and it's causing great distress in my > marriage of only four years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Dear Darlene, Whew! What problems you have! My problem is being older (76) Having health problems of my own. But, the ride is still the same. With our LOs trying to figure out a way to go home, or crying and begging to go home. EVERYDAY! In time they accept the new home (nursing home). I did have a lot of help, and things fell into place with getting Medicaid, and moving to an apartment near him. But, it was still hard. Now, it's just him and the illness. I had a rough week with him last week, but things are better now. There is no way we can have hope that things will improve as it won't. So we grit our teeth, and square our shoulders, and get ready for another day. Just as you are doing. Your day is going to kill you if you can't find a way to slow down. It has killed many older caregivers. So, the first rule of thumb is take care of the caregiver first. Somehow, someway, find a way to relieve some of your running. Thank goodness we had all the financial, and legal stuff taken care of. When things got critical then we were half way there in those matters. The above is to let anyone on the List know that they can save themselves a mighty big headache if they can possibly get those things taken care of early on in the disease. Dear I'm terribly sorry. There are times, such as yours, that all of it is thrust upon us, and we do as you are doing, trying to unscramble a real problem. Please let us know the outcome. Love a lot, Imogene In a message dated 1/13/2009 12:12:35 PM Central Standard Time, darlenej@... writes: Thanks Sherry for your input. Where abouts are you in Michigan? I also am in Michigan. I don't know how it'll all settle out. I know the city where the house is in has MEGA codes and rules regarding upkeep. I suppose we could call the bank, explain the situation, give them back the mortgage, and let them worry about it. If there's no money, there's no money. Again, the house is not up to code and my husband and I just do not have the money to put in $15k or more to do the necessary repairs, plus pay the mortgage itself and home insurance. Without the repairs it cannot even be rented out. The entire wiring system is " gerry rigged " with electrical plugs not working and lights flickering or going out. I believe the wiring has just rotted. The furnace is old but has been kept up. I put a new roof on the home and garage on around 2000, at my own expense, when it was leaking so there is water damage in the dining room. It's just a mess. This entire ordeal is a mess. It's bad enough to see someone you love be somewhere when they'd rather be home and feel like you've imprisoned them without all this other baggage. For so many years I tried and did all I could do to help her but for finances and getting her moved by us, she refused, though she did allow me to help her when her husband had strokes, legs run over by their own car, and then put in a nursing home not to mention her surgeries (quadruple heart surgery, arteries in neck cleared out), and many hospital visits. I did this while working and having to get up at 2:30am, get home around 3pm, run over to the house when my mom was in the hospital and bring something for her husband to eat (who had the strokes and suffering alzheimer's, before going into the nursing home), go to the hospital, visit my mother, back to the house to make sure her husband ate the food I brought, then home by 10pm, to get up at 2:30am and do it all over again, and once it was for two weeks. I nearly had a nervous breakdown, and my mother's husband's family, because of my mother's anger and paranoia, totally stepped out of the picture and left everything, including the care of their own father, on my shoulders. Now, since October 2008, when she went into the hospital, this disease has consumed nearly every day of our lives and put me on an emotional roller coaster I just cannot believe. It's tearing my heart out and the frustration of the mess of the home and financial disaster she's created is just a nightmare. Anyway, thanks all for listening. Right now I am in the maze of organizing the info for the gal at the Family Independence Agency for my mother's long term care which takes all of her and her husband's income except for like $60.00/month. They have absolutely no assets, one old car, no savings, nada, nothing, zip. Not to mention the heartache of visiting my mother with her hopes still so high about going home. If this doesn't kill me I don't know what will. I usually leave in tears. Darlene **************New year...new news. Be the first to know what is making headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Thanks Sherry for your input. Where abouts are you in Michigan? I also am in Michigan. I don't know how it'll all settle out. I know the city where the house is in has MEGA codes and rules regarding upkeep. I suppose we could call the bank, explain the situation, give them back the mortgage, and let them worry about it. If there's no money, there's no money. Again, the house is not up to code and my husband and I just do not have the money to put in $15k or more to do the necessary repairs, plus pay the mortgage itself and home insurance. Without the repairs it cannot even be rented out. The entire wiring system is " gerry rigged " with electrical plugs not working and lights flickering or going out. I believe the wiring has just rotted. The furnace is old but has been kept up. I put a new roof on the home and garage on around 2000, at my own expense, when it was leaking so there is water damage in the dining room. It's just a mess. This entire ordeal is a mess. It's bad enough to see someone you love be somewhere when they'd rather be home and feel like you've imprisoned them without all this other baggage. For so many years I tried and did all I could do to help her but for finances and getting her moved by us, she refused, though she did allow me to help her when her husband had strokes, legs run over by their own car, and then put in a nursing home not to mention her surgeries (quadruple heart surgery, arteries in neck cleared out), and many hospital visits. I did this while working and having to get up at 2:30am, get home around 3pm, run over to the house when my mom was in the hospital and bring something for her husband to eat (who had the strokes and suffering alzheimer's, before going into the nursing home), go to the hospital, visit my mother, back to the house to make sure her husband ate the food I brought, then home by 10pm, to get up at 2:30am and do it all over again, and once it was for two weeks. I nearly had a nervous breakdown, and my mother's husband's family, because of my mother's anger and paranoia, totally stepped out of the picture and left everything, including the care of their own father, on my shoulders. Now, since October 2008, when she went into the hospital, this disease has consumed nearly every day of our lives and put me on an emotional roller coaster I just cannot believe. It's tearing my heart out and the frustration of the mess of the home and financial disaster she's created is just a nightmare. Anyway, thanks all for listening. Right now I am in the maze of organizing the info for the gal at the Family Independence Agency for my mother's long term care which takes all of her and her husband's income except for like $60.00/month. They have absolutely no assets, one old car, no savings, nada, nothing, zip. Not to mention the heartache of visiting my mother with her hopes still so high about going home. If this doesn't kill me I don't know what will. I usually leave in tears. Darlene From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Sherry UpNorth Sent: Tuesday, January 13, 2009 10:31 AM To: LBDcaregivers Subject: Re: New to group Now that all 3 leins have been removed (IRS, property tax, signature line of credit), my sister uses the house. It is once again lein-free, and my mom is on medicaid but the state (Michigan) doesn't take it - she is allowed to keep a house and a car (which was so overdue on payments, we just let the bank come and get it; neither of us wanted it). However, sometimes a house just isn't worth all the trouble really. If it had been up to me, I'd have let the lein-holders fight over it. My sister really wanted to keep it though, and has assumed the cost of keeping it up, which is also significant. IIRC she's put over $20k into it and still needs to put in a new septic system...of course, if we were to sell it, the state would take the money anyway, so we won't do that. Anyway I agree with you, this is SUCH a horrible disease, and it just all gets to be too much, and we have to prioritize. Taking care of Mom is more important when resources are already stretched when you come right down to it . His, Sherry www.owly.net daughter of , (mis?)diagnosed with AD in 2005, descent slowed by Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my house. We're learning to live with Lewy... ----- Original Message ----- From: " darlenej " <darlenej@... <mailto:darlenej%40charter.net> > > That's all very interesting! The problem with the house is that my mother > mortgaged it in 2006 though it had been paid off in 1981. She ate up a > line > of equity. Now the mortgage is more than the value of the home. An IRS > lien is one thing, but no money to pay the mortgage is another story for > when she goes in full time care the state takes everything. We could keep > the house but it cannot be rented as it needs a minimum of 15k to just > bring > it up to code. > > I have DPOA and medical power of attorney. How my mother managed to do > that > in 2001 is a miracle and what is got her the surgery she needed, and the > help she's needed for so long. > > I just watched a movie on Alzheimer's, and although my mother is diagnosed > with dementia, she has all the signs of Alzheimer's. > http://www.pbs.org/theforgetting/watch/index.html > > The psychologist working with her says that Alzheimer's is a form of > dementia and that a true diagnosis cannot be made except by autopsy. I > have > found this to be true. Wonder if anyone knows any better. > > I really appreciate your input. This is one of the toughest things I've > ever gone through and I've lost a brother and a five year old son, both > were > heart wrenching, and this disease is just so horrible. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 I am glad things are clearer for you now, Darlene. I'm sure your decision is the best for your Mom. I't sad to see how people shut out of their lives the ones that can be more loving and caring. In your case, having in mind what you knew about your mother I don't think it strange that you didn't realize she was sick -after all, that was her regular behavior anyway. At least she has you. Hugs, Raquel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Oh Darlene I feel so badly for you! It is so difficult...my mother has lived her life as a major manipulator and she pulled out ALL the stops to manipulate herself out of the nursing home. I told her long ago that her house was gone; she knew about the leins and didn't question me. While it wasn't true, it kept her from keeping her hopes up that she'd ever go back there, and the " no place else to go " idea has helped her accept her placement in the nursing home. I've had to learn to be kinder to her through altered truths even though it still rubs me the wrong way to do so... I'm in Houghton Lake now, but have lived all over the state; grew up in Garden City, moved to Bloomfield Hills after high school, on my own I've lived in , Northville, Novi, Howell, Flint, Lansing, and surrounding areas of the above, and that's just in Michigan - lol. We'll be here for a while though, we feel like we've landed in a great place, now. Anyway, I really do feel for what you're going through, if my sister and I hadn't worked together all this time (she handles the business and financial matters, I handle the medical and personal things), I don't know what I'd have done. I wish there were more I could do to help. Just remember that this will most likely be a long ride, and you have to do whatever it takes to reserve your strength (and your sanity!) for the duration. And don't sweat the stuff that, 20 years from now, really won't matter . His, Sherry www.owly.net daughter of , (mis?)diagnosed with AD in 2005, descent slowed by Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my house. We're learning to live with Lewy... ----- Original Message ----- > Where abouts are you in Michigan? I also am in Michigan. > > I don't know how it'll all settle out. I know the city where the house is > in has MEGA codes and rules regarding upkeep. I suppose we could call the > bank, explain the situation, give them back the mortgage, and let them > worry about it. If there's no money, there's no money. Again, the house > is not up to code and my husband and I just do not have the money to put > in $15k or more to do the necessary repairs, plus pay the mortgage itself > and home insurance. Without the repairs it cannot even be rented out. > The entire wiring system is " gerry rigged " with electrical plugs not > working and lights flickering or going out. I believe the wiring has just > rotted. The furnace is old but has been kept up. I put a new roof on the > home and garage on around 2000, at my own expense, when it was leaking so > there is water damage in the dining room. It's just a mess. > > This entire ordeal is a mess. It's bad enough to see someone you love be > somewhere when they'd rather be home and feel like you've imprisoned them > without all this other baggage. > > For so many years I tried and did all I could do to help her but for > finances and getting her moved by us, she refused, though she did allow me > to help her when her husband had strokes, legs run over by their own car, > and then put in a nursing home not to mention her surgeries (quadruple > heart surgery, arteries in neck cleared out), and many hospital visits. I > did this while working and having to get up at 2:30am, get home around > 3pm, run over to the house when my mom was in the hospital and bring > something for her husband to eat (who had the strokes and suffering > alzheimer's, before going into the nursing home), go to the hospital, > visit my mother, back to the house to make sure her husband ate the food I > brought, then home by 10pm, to get up at 2:30am and do it all over again, > and once it was for two weeks. I nearly had a nervous breakdown, and my > mother's husband's family, because of my mother's anger and paranoia, > totally stepped out of the picture and left everything, including the care > of their own father, on my shoulders. > > Now, since October 2008, when she went into the hospital, this disease has > consumed nearly every day of our lives and put me on an emotional roller > coaster I just cannot believe. It's tearing my heart out and the > frustration of the mess of the home and financial disaster she's created > is just a nightmare. > > Anyway, thanks all for listening. Right now I am in the maze of > organizing the info for the gal at the Family Independence Agency for my > mother's long term care which takes all of her and her husband's income > except for like $60.00/month. They have absolutely no assets, one old > car, no savings, nada, nothing, zip. > > Not to mention the heartache of visiting my mother with her hopes still so > high about going home. If this doesn't kill me I don't know what will. I > usually leave in tears. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Well said, June. Imogene In a message dated 1/14/2009 5:17:11 PM Central Standard Time, jchristensen1953@... writes: We have to be sure we are talking about the same thing here. If we are talking about a single person, it is different than a married couple. If it is a couple, the residential spouse is allowed to keep the residential home and one car, household funishings, personal items, etc. For purposes of determining Medicaid eligibility, if you do a division of assets, they count checking, savings accounts, IRAs, 401ks, whole life insurance policies (but not term), and other liquid assets. Then, they do the division of assets where the residential spouse's share isn't considered (up to a certain amount), but the ill person's share has to be spent down to $2,000 (in some states, it is a different amount, but generally not over $3,000). This money can be spent to improve the house, buy a new car, prepay funeral plans, and just about anything BUT GIVING IT AWAY. If it is given away, there is a five-year lookback period, and if you are within that time, you may have to consider that as part of the assets. After the spenddown is finished and the person is in the NH under Medicaid, the total monthly income of the couple is determined, and whatever amount it is over the allowable amount (which is different in each state), that amount is the share that Medicaid takes for the patient's share of the NH cost, and they pay the rest. There are some things that are allowed, such as rent, house payments, taxes, health insurance premiums to be taken from the total income in determining the patient's share. Each state is probably different with that, too. After both spouses are deceased, then the state may go in and recover what it can from the sale of the house, etc. Sometimes they determine that it is not worthwhile. However, it was my understanding that if a person is single, all assets must be spent down to the allowable $2,000-3,000, including the house and car. Then, the person is allowed approximately $50 (again determined by each state) for incidental expenses, but the remainder of the person's income goes toward the NH care. Since our situation was a couple, I didn't pay a lot of attention to this, but a friend's mother had to dispose of everything before they would accept her mother on Medicaid. Needless to say, there was nothing to go to the heirs by the time she died. One thing that I would certainly do if there are life insurance policies, retirement plans, annuities, etc., naming the ill person as a beneficiary is to get that person's name off as beneficiary if there is any chance Medicaid will need to be accessed. The reson - if the owner of those assets dies before the ill person, and many do, those funds will go to the ill person and will be part of the spenddown or used for NH care expenses. These things are assets of the well person, and those funds should go to whomever that person desires, as that shouldn't be part of the payment plan for the ill person (unless that is what you want.) June C. **************Inauguration '09: Get complete coverage from the nation's capital. (http://news.aol.com/main/politics/inauguration?ncid=emlcntusnews00000003) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Darling Helene, as far as I understand it, giving $12,000 a year is a separate law related to taxes. With Medicaid, there is NO giving at least five years before a person has to have Medicaid. All that extra money, the house and everything should be in a trusted person's name. Not just a Will, but by going to a lawyer, and having everything transfered at least 5 years before Medicaid is needed. I am glad we did that many years ago, and what little we have already belongs to our children. With a clause that we can live in the house for the rest of our lives, and they can't sell it out from under us. So, in that respect it is still our house. Love a lot, Imogene In a message dated 1/14/2009 6:01:53 PM Central Standard Time, hgm54@... writes: Dear June, What do you mean by " giving it away? " Are you talking about gifting? I thought that gifts can be given - $12,000 per recipient per year. Hope you are staying warm and dry! Helene **************Inauguration '09: Get complete coverage from the nation's capital. (http://news.aol.com/main/politics/inauguration?ncid=emlcntusnews00000003) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Hi dear Sherry, We tried. But, I can also attribute a lot of that to my oldest daughter. She is the brains in business, and with lawyers. She helped us get all set up. Well, we got our own Lawyer. We were just concerned about Wills, and talked about getting it done. Ha! That was the tip of the iceberg. Sherry how are you doing? Did what the Doctor fix stay fixed? I sure hope so. You were mighty fortunate to have a good sister that got you to a good doctor. My turn is next. I don't know what will be done for my neck. I will see my doctor on Friday the 16th, and he will refer me to a Neurosurgeon. I looked up information on the Internet and I don't like what I read one bit. I sure don't want to go under Anesthetics with a common gas called isoflurane that is used all the time. Do you recall reading about it? Isoflurane can lead to the generation of Toxic amyloid-beta (A-beta) protein in the brains of mice. The article said that patients have complained of a form of dementia, occurring after surgery. What have we all been saying about surgery being the cause of our LOs Dementia? Now they say it is true in mice. Needless to say I DON'T want any surgery. My sister had big cancer surgery prior to her Dementia which killed her. Not cancer, but the results of surgery. Ok down girl! (laughing here) Love a lot, Imogene In a message dated 1/14/2009 6:37:41 PM Central Standard Time, upnorth@... writes: It is wonderful that you were so proactive so your children won't be left with what Gwen and I have had to deal with <sigh>... His, Sherry **************Inauguration '09: Get complete coverage from the nation's capital. (http://news.aol.com/main/politics/inauguration?ncid=emlcntusnews00000003) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 We have to be sure we are talking about the same thing here. If we are talking about a single person, it is different than a married couple. If it is a couple, the residential spouse is allowed to keep the residential home and one car, household funishings, personal items, etc. For purposes of determining Medicaid eligibility, if you do a division of assets, they count checking, savings accounts, IRAs, 401ks, whole life insurance policies (but not term), and other liquid assets. Then, they do the division of assets where the residential spouse's share isn't considered (up to a certain amount), but the ill person's share has to be spent down to $2,000 (in some states, it is a different amount, but generally not over $3,000).  This money can be spent to improve the house, buy a new car, prepay funeral plans, and just about anything BUT GIVING IT AWAY. If it is given away, there is a five-year lookback period, and if you are within that time, you may have to consider that as part of the assets. After the spenddown is finished and the person is in the NH under Medicaid, the total monthly income of the couple is determined, and whatever amount it is over the allowable amount (which is different in each state), that amount is the share that Medicaid takes for the patient's share of the NH cost, and they pay the rest. There are some things that are allowed, such as rent, house payments, taxes, health insurance premiums to be taken from the total income in determining the patient's share. Each state is probably different with that, too.  After both spouses are deceased, then the state may go in and recover what it can from the sale of the house, etc. Sometimes they determine that it is not worthwhile.  However, it was my understanding that if a person is single, all assets must be spent down to the allowable $2,000-3,000, including the house and car. Then, the person is allowed approximately $50 (again determined by each state) for incidental expenses, but the remainder of the person's income goes toward the NH care.  Since our situation was a couple, I didn't pay a lot of attention to this, but a friend's mother had to dispose of everything before they would accept her mother on Medicaid. Needless to say, there was nothing to go to the heirs by the time she died.  One thing that I would certainly do if there are life insurance policies, retirement plans, annuities, etc., naming the ill person as a beneficiary is to get that person's name off as beneficiary if there is any chance Medicaid will need to be accessed. The reson - if the owner of those assets dies before the ill person, and many do, those funds will go to the ill person and will be part of the spenddown or used for NH care expenses. These things are assets of the well person, and those funds should go to whomever that person desires, as that shouldn't be part of the payment plan for the ill person (unless that is what you want.)  June C.  Subject: RE: New to group To: LBDcaregivers Date: Wednesday, January 14, 2009, 12:00 PM The state does not take your house nor your car nor any funeral prepaid contracts, and/or plots and caskets. They do take everything else. IF one receives any kind of income, has stocks, bonds, savings account, etc., it all goes to the nursing home wherein they bill the state for the balance owed, and leave about $60.00 in your account for incidentals. Darlene From: LBDcaregivers@ yahoogroups. com [mailto:LBDcaregivers@ yahoogroups. com] On Behalf Of Iward27663aol (DOT) com Sent: Wednesday, January 14, 2009 12:22 PM To: LBDcaregivers@ yahoogroups. com Subject: Re: New to group If the lein is more than the house is worth, then the State would not want to touch it. There was not enough money left in the house for them to bother with it after the lein is paid. The lein means the bank, or loan company, owns the house, unless the family want to pay it off. Which, as I recall she said they had that to pay, also. The loan company would rather the family pay it off than to have to bother with it either. Did I confuse all of you? (grin) Love a lot, Imogene In a message dated 1/13/2009 10:26:59 PM Central Standard Time, jchristensen1953@ yahoo.com <mailto:jchristense n1953%40yahoo. com> writes: I am surprised that the state didn't make you sell the house. I thought a single person had to get rid of all assets except a small amount of cash. Married people can keep the residential home and one car, but I thought singles had to sell to give everything to Mcaid before they could receive benefits. Consider yourself lucky if they didn't make you do it. You might consider a reverse mortgage so that you could free up some cash to fix the house. Ordinarily, it's not a very good idea unless you are desperate, but given the fact that she might be able to get a little cash from it might be worth checking into. The house would still have to be in her name, though. June ************ **Inauguration '09: Get complete coverage from the nation's capital. (http://news. aol.com/main/ politics/ inauguration? ncid=emlcntusnew s00000003) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 I thought we were talking about those who were in the NH. June From: Sherry UpNorth <upnorthowly (DOT) net> Subject: Re: New to group To: LBDcaregivers@ yahoogroups. com Date: Tuesday, January 13, 2009, 9:30 AM Now that all 3 leins have been removed (IRS, property tax, signature line of credit), my sister uses the house. It is once again lein-free, and my mom is on medicaid but the state (Michigan) doesn't take it - she is allowed to keep a house and a car (which was so overdue on payments, we just let the bank come and get it; neither of us wanted it). However, sometimes a house just isn't worth all the trouble really. If it had been up to me, I'd have let the lein-holders fight over it. My sister really wanted to keep it though, and has assumed the cost of keeping it up, which is also significant. IIRC she's put over $20k into it and still needs to put in a new septic system...of course, if we were to sell it, the state would take the money anyway, so we won't do that. Anyway I agree with you, this is SUCH a horrible disease, and it just all gets to be too much, and we have to prioritize. Taking care of Mom is more important when resources are already stretched when you come right down to it . His, Sherry www.owly.net daughter of , (mis?)diagnosed with AD in 2005, descent slowed by Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my house. We're learning to live with Lewy... ----- Original Message ----- From: " darlenej " <darlenejcharter (DOT) net> > That's all very interesting! The problem with the house is that my mother > mortgaged it in 2006 though it had been paid off in 1981. She ate up a > line > of equity. Now the mortgage is more than the value of the home. An IRS > lien is one thing, but no money to pay the mortgage is another story for > when she goes in full time care the state takes everything. We could keep > the house but it cannot be rented as it needs a minimum of 15k to just > bring > it up to code. > > I have DPOA and medical power of attorney. How my mother managed to do > that > in 2001 is a miracle and what is got her the surgery she needed, and the > help she's needed for so long. > > I just watched a movie on Alzheimer's, and although my mother is diagnosed > with dementia, she has all the signs of Alzheimer's. > http://www.pbs. org/theforgettin g/watch/index. html > > The psychologist working with her says that Alzheimer's is a form of > dementia and that a true diagnosis cannot be made except by autopsy. I > have > found this to be true. Wonder if anyone knows any better. > > I really appreciate your input. This is one of the toughest things I've > ever gone through and I've lost a brother and a five year old son, both > were > heart wrenching, and this disease is just so horrible. Messages in this topic (81 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Dear June, What do you mean by " giving it away? " Are you talking about gifting? I thought that gifts can be given - $12,000 per recipient per year.  Hope you are staying warm and dry! Helene From: darlenej <darlenejcharter (DOT) net> Subject: RE: New to group To: LBDcaregivers@ yahoogroups. com Date: Wednesday, January 14, 2009, 12:00 PM The state does not take your house nor your car nor any funeral prepaid contracts, and/or plots and caskets. They do take everything else. IF one receives any kind of income, has stocks, bonds, savings account, etc., it all goes to the nursing home wherein they bill the state for the balance owed, and leave about $60.00 in your account for incidentals. Darlene From: LBDcaregivers@ yahoogroups. com [mailto:LBDcaregive rs@ yahoogroups. com] On Behalf Of Iward27663aol (DOT) com Sent: Wednesday, January 14, 2009 12:22 PM To: LBDcaregivers@ yahoogroups. com Subject: Re: New to group If the lein is more than the house is worth, then the State would not want to touch it. There was not enough money left in the house for them to bother with it after the lein is paid. The lein means the bank, or loan company, owns the house, unless the family want to pay it off. Which, as I recall she said they had that to pay, also. The loan company would rather the family pay it off than to have to bother with it either. Did I confuse all of you? (grin) Love a lot, Imogene In a message dated 1/13/2009 10:26:59 PM Central Standard Time, jchristensen1953@ yahoo.com <mailto:jchristense n1953%40yahoo. com> writes: I am surprised that the state didn't make you sell the house. I thought a single person had to get rid of all assets except a small amount of cash. Married people can keep the residential home and one car, but I thought singles had to sell to give everything to Mcaid before they could receive benefits. Consider yourself lucky if they didn't make you do it. You might consider a reverse mortgage so that you could free up some cash to fix the house. Ordinarily, it's not a very good idea unless you are desperate, but given the fact that she might be able to get a little cash from it might be worth checking into. The house would still have to be in her name, though. June ************ **Inauguration '09: Get complete coverage from the nation's capital. (http://news. aol.com/main/ politics/ inauguration? ncid=emlcntusnew s00000003) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 I don't know if it varies by state, but here's what the elder law attorney in northern Michigan says about that: " Many people confuse the gift tax rules with the Medicaid gift rules. For tax purposes, you can give any person up to $12,000 per year without creating a gift tax issue. But for Medicaid purposes, any gifts will create a penalty. What does this mean? Under current law, gifting money creates a period of time when the state of Michigan will not pay for long-term care Medicaid. Before applying for long-term care Medicaid, you must first be asset-eligible. For a single person, that means having less than $2,000 in bank accounts. Any gifts can be reviewed by the state for up to five years under present law. But if you have given away money at any time over the last five years, those amounts will be added together and divided by the average monthly cost of nursing home care as determined by the state of Michigan (presently $6,191). So if you gave $12,000 to five people ($60,000.00), you would not receive any assistance from the state with the cost of long-term care for almost 10 months. What is worse, you would not begin the clock on the 10-month penalty period until you were below $2,000 (or higher for a married couple). That means that the state would not pay for your care and you would have no money left to pay for it yourself, for almost 10 months. This is one reason that proper planning is so critical. " His, Sherry www.owly.net daughter of , (mis?)diagnosed with AD in 2005, descent slowed by Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my house. We're learning to live with Lewy... ----- Original Message ----- What do you mean by " giving it away? " Are you talking about gifting? I thought that gifts can be given - $12,000 per recipient per year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 It is wonderful that you were so proactive so your children won't be left with what Gwen and I have had to deal with <sigh>... His, Sherry www.owly.net daughter of , (mis?)diagnosed with AD in 2005, descent slowed by Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my house. We're learning to live with Lewy... ----- Original Message ----- > Darling Helene, as far as I understand it, giving $12,000 a year is a > separate law related to taxes. > > With Medicaid, there is NO giving at least five years before a person has > to > have Medicaid. All that extra money, the house and everything should be > in a > trusted person's name. Not just a Will, but by going to a lawyer, and > having > everything transfered at least 5 years before Medicaid is needed. > > I am glad we did that many years ago, and what little we have already > belongs to our children. With a clause that we can live in the house for > the rest > of our lives, and they can't sell it out from under us. So, in that > respect it > is still our house. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 , I am so sorry to hear the suffering that you have been going through. For what it's worth, my wife, , has been through many of these things, also. She started having fatigue and allergic problems long before we discovered that she had Lyme Disease. She reached a point when she was down to 85 pounds and could barely eat anything. She was a tall, thin girl of 5'6" and 110 lb before she got sick. It reached a point where I had to make everything she ate, in order to avoid the food allergies/sensitivities. I made a lot of custard, which only had eggs, milk, sugar and nutmeg. Everything was made from scratch - of course bread, graham crackers, chicken soup, ...I could share many recipes with you if you want. I would also agree with you that you could probably not tolerate any of the herbal things; colloidal silver might be worth a try, but I share your concern about possibly developing a reaction to it as well. This sounds so much like , who, if there is a 1% chance of a reaction, she gets it. The good news is, that now, when she wants to, she can eat a burger from Mc's! I know it is not good for a steady diet, but it was cause of great celebration, when she at least had the choice. I can also buy bread already baked and many other things. The thing that I believe saved her life was actually antibiotics; she had IV's for about 6 months. Now I see that it did not "cure" her, though, so we have moved on to rife therapy. She is using a coil machine, and is getting better, although she is still not 100% (I know you have heard that before:( ). Other good news is that in the last month or so, she has been able to do some things she hadn't done in over 10 years: walk all the way to the bathroom and back, go to family Christmas dinner, and go to a movie for the first time in 15 years. Please hang in there, one day at a time; there should be plenty of ideas from the group that might help, but don't feel like you have to try any or all of the sugestions. What state do you live in? I bet there will be someone that might let you try out a machine until you decide what you want to do. I live in Oklahoma, so contact me if you are close enough. Also, be open to all kinds of ideas, if you decide to go with a coil machine - group purchase, rental, credit, etc..... I wish you the best, To: Lyme_and_Rife Sent: Tuesday, February 7, 2012 9:07 PMSubject: new to group Hi Everyone,I just wanted to post my story, in case anyone is interested.I began developing food allergies 5 years ago. I traced it to 2 episodes of latex exposure and extreme allergic reactions and learned that latex can cross-relate to all food groups. So I thought that was my diagnosis. But a lot of things didn't make sense. Multiple doctors couldn't believe I was reacting to so many foods. I found LDA food shots and began on them 2 years ago. They've kept me alive...2 years ago I was starving...reacting to every food. But the shots also make me develop allergies, so I'm on a see-saw diet, and still don't know if I'm getting over my food allergies or just barely surviving....I usually don't have enough calories to eat. Enough of that part of the story.2 weeks ago my general practitioner out of the blue said he was going to do a Lyme titer test on me. That started me thinking. All along I've known I was exposed to Lymes because from the time I was 12 to 18 I would often be bit by ticks and once I had the bulls-eye rash for about 1 1/2 weeks, then developed arthritis type symptoms in my knees occasionally. It went away after a few years and I lived a healthy life until the food allergies.Well, after doing some reading, I realized it doesn't matter if the Lyme titer test is positive or negative, the bulls-eye rash, multiple tick bites and all the immunological problems I currently have point to lymes.Now I just need to figure out what to do about it. Unfortunately, I am sooooo allergic to all foods, that I doubt whether I would tolerate any of the recommended herbs....or if I did, it wouldn't be long until I became allergic to them also. I think rife would be great...but I have no experience with electrical things....I know someone who could give some help, but even then, to buy the parts for the Doug coil would be out of question. And, I'm still not sure if I believe that rife is very effective. I keep trying to find personal success stories with rife, but haven't found too many. Besides, at least in my case, I would have told everyone I got over Lymes as a kid, but the truth is, people can think they are over it, but it's still hiding out.I think the safest and most economical approach at this point is colloidal silver. I'm also afraid of developing an allergic reaction to that too, since I'm allergic to some metals...nickel, gold.Ughhh...so for the present, my goal is to try to not starve by using LDA food shots, which unfortunately, have been shown to work for everybody but lymes patients (I think it's the way the lymes causes an immune response to the shots, whereas with others it doesn't) and then try to overcome lymes.I daily think this may be my last day.....for the present I'm at 300 calories a day and not doing well. But the LDA shot should start working in 12 days, then I can slowly eat many things I'm allergic to, in moderation. I just started 5mg Corteff for long term treatment to help with the food allergies. I know it's not recommended for Lymes, but without it I would be dead from starvation....and I'm not kidding. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 Hi , Your story matches mine almost to the T. When I first starting having symptoms, I worked in a building that had mold damage. I didn't even draw a parallel to the mold at the time, but I had become allergic to all food except chicken and oatmeal and after consumming that I soon became allergic to it as well. I then started reacting to all plastics, latex polyesther, polyurethane, memory foam, you name it. Hydrocarbons and fuels from car exhaust would send me over the edge and many more things. What really helped me was going to a NAET practitioner to do allergy elimination because even though your body is reacting to all of those foods, you need the nutrients from them and you can not rebuild the body if you can not absorb them due to allergies. NAET was a life saver for me and finding out that I had Lyme and treating it with the Coil machine. Now I definitely have a stronger sense of smell then most people, but I do not react to my environment or foods anymore. I also cut out Gluten a big contributor to my food allergies and I take a lot of digestive enzymes and probiotics. You can beat this! Go to www.NAET.com and go to the link that says find a practitioner. I have come a long way and I would say I am 95% recovered. To let you know how sick I was, my CD57 score which test the immune function was a 3 and it was supposed to be above 60. > > Hi Everyone, > > I just wanted to post my story, in case anyone is interested. > > > I began developing food allergies 5 years ago. I traced it to 2 episodes of latex exposure and extreme allergic reactions and learned that latex can cross-relate to all food groups. So I thought that was my diagnosis. But a lot of things didn't make sense. Multiple doctors couldn't believe I was reacting to so many foods. I found LDA food shots and began on them 2 years ago. They've kept me alive...2 years ago I was starving...reacting to every food. But the shots also make me develop allergies, so I'm on a see-saw diet, and still don't know if I'm getting over my food allergies or just barely surviving....I usually don't have enough calories to eat. Enough of that part of the story. > > 2 weeks ago my general practitioner out of the blue said he was going to do a Lyme titer test on me. That started me thinking. All along I've known I was exposed to Lymes because from the time I was 12 to 18 I would often be bit by ticks and once I had the bulls-eye rash for about 1 1/2 weeks, then developed arthritis type symptoms in my knees occasionally. It went away after a few years and I lived a healthy life until the food allergies. > > Well, after doing some reading, I realized it doesn't matter if the Lyme titer test is positive or negative, the bulls-eye rash, multiple tick bites and all the immunological problems I currently have point to lymes. > > Now I just need to figure out what to do about it. Unfortunately, I am sooooo allergic to all foods, that I doubt whether I would tolerate any of the recommended herbs....or if I did, it wouldn't be long until I became allergic to them also. > > I think rife would be great...but I have no experience with electrical things....I know someone who could give some help, but even then, to buy the parts for the Doug coil would be out of question. > > And, I'm still not sure if I believe that rife is very effective. I keep trying to find personal success stories with rife, but haven't found too many. Besides, at least in my case, I would have told everyone I got over Lymes as a kid, but the truth is, people can think they are over it, but it's still hiding out. > > I think the safest and most economical approach at this point is colloidal silver. I'm also afraid of developing an allergic reaction to that too, since I'm allergic to some metals...nickel, gold. > > Ughhh...so for the present, my goal is to try to not starve by using LDA food shots, which unfortunately, have been shown to work for everybody but lymes patients (I think it's the way the lymes causes an immune response to the shots, whereas with others it doesn't) and then try to overcome lymes. > > I daily think this may be my last day.....for the present I'm at 300 calories a day and not doing well. But the LDA shot should start working in 12 days, then I can slowly eat many things I'm allergic to, in moderation. > > I just started 5mg Corteff for long term treatment to help with the food allergies. I know it's not recommended for Lymes, but without it I would be dead from starvation....and I'm not kidding. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 Wow...I'm so encouraged that your wife is getting better. Thank you for sharing that with me. I have felt like an island...the only one out there with such weird food reactions...not that I want anyone else to have them, but it is good to know that the food issues can be overcome. For me, that's first priority. I'm so glad using a rife machine is working for you. That's probably the safest route for me, eventually. > > , >  > I am so sorry to hear the suffering that you have been going through. >  > For what it's worth, my wife, , has been through many of these things, also. She started having fatigue and allergic problems long before we discovered that she had Lyme Disease. She reached a point when she was down to 85 pounds and could barely eat anything. She was a tall, thin girl of 5'6 " and 110 lb before she got sick. It reached a point where I had to make everything she ate, in order to avoid the food allergies/sensitivities. > I made a lot of custard, which only had eggs, milk, sugar and nutmeg. Everything was made from scratch - of course bread, graham crackers, chicken soup, ...I could share many recipes with you if you want. >  > I would also agree with you that you could probably not tolerate any of the herbal things; colloidal silver might be worth a try, but I share your concern about possibly developing a reaction to it as well. This sounds so much like , who, if there is a 1% chance of a reaction, she gets it. >  > The good news is, that now, when she wants to, she can eat a burger from Mc's! I know it is not good for a steady diet, but it was cause of great celebration, when she at least had the choice. >  > I can also buy bread already baked and many other things. >  > The thing that I believe saved her life was actually antibiotics; she had IV's for about 6 months. Now I see that it did not " cure " her, though, so we have moved on to rife therapy. She is using a coil machine, and is getting better, although she is still not 100% (I know you have heard that before:( ). >  > Other good news is that in the last month or so, she has been able to do some things she hadn't done in over 10 years: walk all the way to the bathroom and back, go to family Christmas dinner, and go to a movie for the first time in 15 years. >  > Please hang in there, one day at a time; there should be plenty of ideas from the group that might help, but don't feel like you have to try any or all of the sugestions. >  > What state do you live in? > I bet there will be someone that might let you try out a machine until you decide what you want to do. I live in Oklahoma, so contact me if you are close enough. >  > Also, be open to all kinds of ideas, if you decide to go with a coil machine - group purchase, rental, credit, etc..... >  > I wish you the best, > >  >  > > > To: Lyme_and_Rife > Sent: Tuesday, February 7, 2012 9:07 PM > Subject: new to group > > >  > Hi Everyone, > > I just wanted to post my story, in case anyone is interested. > > I began developing food allergies 5 years ago. I traced it to 2 episodes of latex exposure and extreme allergic reactions and learned that latex can cross-relate to all food groups. So I thought that was my diagnosis. But a lot of things didn't make sense. Multiple doctors couldn't believe I was reacting to so many foods. I found LDA food shots and began on them 2 years ago. They've kept me alive...2 years ago I was starving...reacting to every food. But the shots also make me develop allergies, so I'm on a see-saw diet, and still don't know if I'm getting over my food allergies or just barely surviving....I usually don't have enough calories to eat. Enough of that part of the story. > > 2 weeks ago my general practitioner out of the blue said he was going to do a Lyme titer test on me. That started me thinking. All along I've known I was exposed to Lymes because from the time I was 12 to 18 I would often be bit by ticks and once I had the bulls-eye rash for about 1 1/2 weeks, then developed arthritis type symptoms in my knees occasionally. It went away after a few years and I lived a healthy life until the food allergies. > > Well, after doing some reading, I realized it doesn't matter if the Lyme titer test is positive or negative, the bulls-eye rash, multiple tick bites and all the immunological problems I currently have point to lymes. > > Now I just need to figure out what to do about it. Unfortunately, I am sooooo allergic to all foods, that I doubt whether I would tolerate any of the recommended herbs....or if I did, it wouldn't be long until I became allergic to them also. > > I think rife would be great...but I have no experience with electrical things....I know someone who could give some help, but even then, to buy the parts for the Doug coil would be out of question. > > And, I'm still not sure if I believe that rife is very effective. I keep trying to find personal success stories with rife, but haven't found too many. Besides, at least in my case, I would have told everyone I got over Lymes as a kid, but the truth is, people can think they are over it, but it's still hiding out. > > I think the safest and most economical approach at this point is colloidal silver. I'm also afraid of developing an allergic reaction to that too, since I'm allergic to some metals...nickel, gold. > > Ughhh...so for the present, my goal is to try to not starve by using LDA food shots, which unfortunately, have been shown to work for everybody but lymes patients (I think it's the way the lymes causes an immune response to the shots, whereas with others it doesn't) and then try to overcome lymes. > > I daily think this may be my last day.....for the present I'm at 300 calories a day and not doing well. But the LDA shot should start working in 12 days, then I can slowly eat many things I'm allergic to, in moderation. > > I just started 5mg Corteff for long term treatment to help with the food allergies. I know it's not recommended for Lymes, but without it I would be dead from starvation....and I'm not kidding. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 Hi , Yes, our stories are very similar. I've had some minor reactions to gas, perfumes, etc., but losing all foods has been really weird. The LDA allergy shots I'm on has kept me able to eat for 2 years. Each shot reprograms your allergy tolerances. I have a lot of confidence in the LDA shots, because they've worked amazingly, but they wear off within a few weeks. Now that I know the Lymes is causing them to not work as well as they do for others, I'm hoping that I can get the Lymes under control and then the LDA will work better and I can get a handle on the food issues. Thank you for sharing what you did. I'm so glad to hear that the coil machine and Naet has helped you. I can't tell you the times in the last few years that I've felt so hopeless because of all this. I feel like I'm starting to at least know why it's happening and that there are ways to get over this! I will definitely check out the Naet website. It sounds interesting. > > > > Hi Everyone, > > > > I just wanted to post my story, in case anyone is interested. > > > > > > I began developing food allergies 5 years ago. I traced it to 2 episodes of latex exposure and extreme allergic reactions and learned that latex can cross-relate to all food groups. So I thought that was my diagnosis. But a lot of things didn't make sense. Multiple doctors couldn't believe I was reacting to so many foods. I found LDA food shots and began on them 2 years ago. They've kept me alive...2 years ago I was starving...reacting to every food. But the shots also make me develop allergies, so I'm on a see-saw diet, and still don't know if I'm getting over my food allergies or just barely surviving....I usually don't have enough calories to eat. Enough of that part of the story. > > > > 2 weeks ago my general practitioner out of the blue said he was going to do a Lyme titer test on me. That started me thinking. All along I've known I was exposed to Lymes because from the time I was 12 to 18 I would often be bit by ticks and once I had the bulls-eye rash for about 1 1/2 weeks, then developed arthritis type symptoms in my knees occasionally. It went away after a few years and I lived a healthy life until the food allergies. > > > > Well, after doing some reading, I realized it doesn't matter if the Lyme titer test is positive or negative, the bulls-eye rash, multiple tick bites and all the immunological problems I currently have point to lymes. > > > > Now I just need to figure out what to do about it. Unfortunately, I am sooooo allergic to all foods, that I doubt whether I would tolerate any of the recommended herbs....or if I did, it wouldn't be long until I became allergic to them also. > > > > I think rife would be great...but I have no experience with electrical things....I know someone who could give some help, but even then, to buy the parts for the Doug coil would be out of question. > > > > And, I'm still not sure if I believe that rife is very effective. I keep trying to find personal success stories with rife, but haven't found too many. Besides, at least in my case, I would have told everyone I got over Lymes as a kid, but the truth is, people can think they are over it, but it's still hiding out. > > > > I think the safest and most economical approach at this point is colloidal silver. I'm also afraid of developing an allergic reaction to that too, since I'm allergic to some metals...nickel, gold. > > > > Ughhh...so for the present, my goal is to try to not starve by using LDA food shots, which unfortunately, have been shown to work for everybody but lymes patients (I think it's the way the lymes causes an immune response to the shots, whereas with others it doesn't) and then try to overcome lymes. > > > > I daily think this may be my last day.....for the present I'm at 300 calories a day and not doing well. But the LDA shot should start working in 12 days, then I can slowly eat many things I'm allergic to, in moderation. > > > > I just started 5mg Corteff for long term treatment to help with the food allergies. I know it's not recommended for Lymes, but without it I would be dead from starvation....and I'm not kidding. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2012 Report Share Posted February 8, 2012 Hi , I too am sorry to hear how you’ve suffered the illness *and* the medical merry-go-round. No matter which way you end up going with your treatment, I believe you need to be doing your healing work under the guidance of a Lyme Literate health care professional. There are Lyme disease associations in pretty much every state…and many of these have private off-line lists of Lyme literate doctors. Whatever state you are in, I’d advise you to locate and contact the Lyme disease association there, and ask for a list of Lyme literates in your area. I’d stay away from anyone associated with Infectious Diseases Society of America (IDSA) doctors, and infectious disease doctors if I were you. Being a part of this and other support groups for Lyme is also important, as you go through treatment and healing. The experience is different from what you might expect, and having a group of people who’ve been where you are headed is extremely important. Hang in there! Pam Quote Link to comment Share on other sites More sharing options...
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