Guest guest Posted March 2, 2012 Report Share Posted March 2, 2012 , I'm so glad you have your sister to lean on. I have 3 sisters and I wouldn't have made it through if my youngest sister weren't so close by. An important thing to do with siblings is figure out who is better at each of the needed duties and then let each other handle what you are good at. I have to admit that I haven't got much experience with someone like your mother. It puzzles me how someone so career oriented ends up with a family - and a loving one at that. Don't get me wrong. My career is extremely important to me, too. It sounds like your mom's friend is more like a sister to her and a beloved aunt to you. Or what my niece called me as she was growing up (in a house with me, her grandma and her mom) - her parental unit. It would be nice if your dad accepted her help. She might, though, have some contacts that could help you find a hospital space for your dad. Yes, this would be a time to pull strings, drop names, whatever you need to do. Your mom's difficulties in the nurturing department just might have something to do with your dad's actions. With you in Greensboro, would there be some place in the city that could take him? How comfortable are you with your dad's doctor? Is he a specialist or a family doc? If a family doctor, maybe you could convince him and your mom that your dad should see a specialist in Greensboro, preferably a neuropsychiatrist. It would just be a short step from there to finding hospital or dementia care for your dad. If you do this, tell the specialist's office everything. This honestly does sound like an emergency and worthy of their making time in their schedule for him. Worst case, call an ambulance or take your dad to the ER (something I never advise but in your case I think probably all you have left to you). Once in an ER, they are unlikely to send your dad home if there is any doubt as to his condition. It doesn't have to be the local ER. If you have to drive a few hours to get to one that is in a better position to help, and you can do so safely, do it. Whatever you need to do. One of the things about this disease is that you have to fight for proper care almost every step of the way. It sounds like your dad is taking (or supposed to be taking) some pretty heavy medications. Can you get a second opinion, again from a specialist, about his treatment? How difficult would it be to get your dad to see someone at UNC? If your mom is concerned about finances, it is time to talk to an eldercare attorney if they haven't done so already. Her portion of their assets does need to be protected. Regardless of what they own now or how comfortable their assets are, Lewy can eat it up fast. Your mom is allowed to keep a defined portion of their assets if and when it comes to applying for Medicaid. You need a lawyer and properly drawn up documents for this. Your mom won't be able to keep wealth, but she will be allowed to keep enough to be comfortable. Also, medical directives and power of attorney need to be decided. If your mom is not in a good position to handle these roles, suggest that you or your sister take them on. But know that they are very demanding, even without a spouse to be concerned with. Things are going to be tough for you and your sister for a while. Lean on each other and your partners. Lean on your " parental unit. " Realize that you can only do what you are allowed to do. If your dad won't take his meds or your mom has no ability to be a caregiver, you can't fix that. They both have to accept whatever alternatives are available to them. You sound young. Too young to have to deal with this. But there you are. Do not take on more than you can handle. If that means a change in your parents' living situation, so be it. There may be a few painful weeks or months for them before they figure it out, but they will figure it out. Do not spend your own money on their care. If they do get financially desperate, there are resources available. You can not ruin your own security, your own future, to protect your mom's pride. Believe me. I learned this the hard way. Do not let your parents' crisis threaten your own relationships. You need your friends. Your boyfriend. Lewy is hard on relationships. Lewy can break up families. Lewy can cause devoted couples to split up. Or Lewy can bring you all closer together and help even your mother find talents she never knew she had. Pay attention to how Lewy affects all of you. And, , wow. A 2-pound baby. You survived that. You can survive this, too. Do not hesitate to ask for help. Most people want to help, they just don't know what to do. Best wishes. Kate > ** > > > > Apparently overnight he seems to have gotten even worse, he was in the > middle of feeding the horses & someone slowed down at the turn near there > house & he ran out into the street yelling at them & left the gate open & a > horse got out. luckily the farrier was there & caught the horse. She talked > to the Dr again today & he upped him to 12 pills a day & added thorazadone. > if he was refusing to take 4 pills 2x a day i'm not sure how he's going to > take 13 pills a day but the Dr said he'd call my dad & explain that he > prescribed the pills & my mom isn't trying to poison him. We're supposed to > wait until Sunday & see how he is. My boyfriend & I are headed up there for > the weekend to help take care of him. > > From what I gather they aren't sure there will be a bed for him at the > geriatric psych ward which is why they're trying to hold off. > > Their farm is a hobby farm, so not huge but they do have tractors, tools & > 2 horses that make me concerned for his safety alone for 8-12 hours a day & > he lives at a bend in a road in a busy neighborhood so people are always > driving by & they have to slow at the bend in the road. > > It's a shame that my mom's best friend who is living on the farm that all > his paranoia is directed towards is a nurse who worked in a > dementia/alzheimers wing of a nursing home for 10 years & is the best > person to help care for him & he won't let her near him. He even chased her > off the lawnmower yesterday. > > As for my mom's caregiving, she's the first to admit she isn't one, when I > was born I was barely 2 lbs & she couldn't handle caring for me so her best > friend (the one that still lives with them) raised me as her own. She > doesn't do well with emotions or not being in control. > > My boyfriend & I come on the weekends when we can & when dad had his last > bad string of episodes last year I spent 2 months on the farm caring for > him & I'll be there for most of March doing the same thing. I'm lucky that > I work for myself (I'm a photographer) so I have the luxury of working from > a different city for a month at a time if I need to. > > I own a house in Greensboro that's now a rental & I would LOVE for them to > move into it, he could walk to the grocery store (it's 1000 feet away) & > there wouldn't be farm upkeep for them to handle. Unfortunately they built > an expensive hobby farm worth 1+ million dollars at the height of the > market & my mom refuses to sell it or rent it. There is also the issue that > whatever money they make from the sale a nursing or skilled care facility > can take. > > My mom is one of those " keeping up appearances " people. she drives a brand > new lexus hybrid & can't afford it & built a million dollar home she can't > afford so she's now having to work 12 hours a day/7 days a week to keep up > with her lifestyle & doesn't have any money left over to care for dad. We > tried before they built the farm to move into my house but it wasn't big > enough for my mom & the neighborhood wasn't nice enough. > > sorry, i know I sound harsh on my mom but my sister & i feel like we're > dealing with a LBD patient & a child instead of our parents. They've been > living outside their means for so long that now when they need the extra > money they're spending on a 4400 sf house & 3 expensive cars they don't > have money to spare. > > > > > > > ** > > > > > > > > > > hello all, I'm . My dad was diagnosed with LBD after becoming > > > increasingly paranoid & hallucinating. > > > > > > He was on every drug LBD patients aren't supposed to take until we > found a > > > wonderful neurologist at UNC that diagnosed his LBD. He has recently > > > (earlier this week) slipped back into the extreme > paranoia/hallucinations > > > and we're not sure if it's him not taking his pills (my mother doesn't > > > always watch him) or if the meds just aren't holding him. He was just > > > started on heavy doses of seraquil (10 pills a day!) to combat the > paranoia > > > & hallucinations but it's not helping yet. > > > > > > I think one of my parent's main issues is their age gap, my mom is 7 > years > > > younger & still working full time while my dad has been retired for 5 > > > years. My dad has gotten to the point where he needs constant > supervision & > > > cannot ride in a car without outbursts & grabbing the steering wheel so > > > he's home alone for 8-12 hours at a time on a farm. His cognitive > abilities > > > are still very much there but he is hallucinating 90% of the time, he > can > > > pull it together enough to have a 2 minute conversation with someone > on the > > > phone & sound normal, but that's about it. > > > > > > I'm the closest child, I live 2 hours away but I'm also the youngest > (I'm > > > 29) and I'm having a hard time convincing my mother to work from home & > > > help take care of my dad, he's calmer when she stays with him. She > would > > > rather him go into a geriatric psych ward. It's extremely frustrating > for > > > my sister & I that my mom is not willing to help my father in any way, > > > claiming she's not a caregiver. I also have two step siblings who are > 20 > > > years older than me who live 10-12 hours away & it's hard to handle > half > > > siblings & my mother together. His 2 sisters live 2 hours away but they > > > don't really understand what's going on even though they've seen him > at his > > > worst. > > > > > > My parents have a horse farm & my mom's best friend lives above their > > > garage & helps take care of the farm and most of his paranoia & > > > hallucinations are directed towards her (she's opening back accounts in > > > their name, sneaking into the house at night trying to stab my dad with > > > needles, stealing their new truck, etc) and every time she comes & goes > > > (she refuses to come into the main house anymore) it sets him off. We > do > > > our best to not talk about anything that will trigger his paranoia but > > > sometimes it's out of our control (a week ago neighborhood kids took my > > > parent's canoe into their pond on their day off school, which set him > off) > > > > > > I am hoping that the new higher levels of seraquil & the possibility of > > > adding clonipan will help level him out again, he did have about 8 > months > > > of being almost back to normal after his initial diagnosis. There is > no LBD > > > support group in Charlotte (where I live) but there is one in > Greensboro, > > > where my parents live. > > > > > > Any advice on spousal caregiving for my mom? My boyfriend & I sat her > down > > > & went over the suggestions on interacting on the LBD website & she > said > > > she's trying to remain calm & not yell at him or get to aggravated > with him > > > after talking to us. > > > > > > Thanks! > > > > > > > > > > > > > > > > > > > > > > > -- > > Kate Knapp, OIT > > University of Minnesota > > > > > > You were born with certain gifts and talents. > > In kindergarten you were taught to share. > > The world needs all of the gifts it can get. > > Don�t be shy. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2012 Report Share Posted March 2, 2012 , I'm so glad you have your sister to lean on. I have 3 sisters and I wouldn't have made it through if my youngest sister weren't so close by. An important thing to do with siblings is figure out who is better at each of the needed duties and then let each other handle what you are good at. I have to admit that I haven't got much experience with someone like your mother. It puzzles me how someone so career oriented ends up with a family - and a loving one at that. Don't get me wrong. My career is extremely important to me, too. It sounds like your mom's friend is more like a sister to her and a beloved aunt to you. Or what my niece called me as she was growing up (in a house with me, her grandma and her mom) - her parental unit. It would be nice if your dad accepted her help. She might, though, have some contacts that could help you find a hospital space for your dad. Yes, this would be a time to pull strings, drop names, whatever you need to do. Your mom's difficulties in the nurturing department just might have something to do with your dad's actions. With you in Greensboro, would there be some place in the city that could take him? How comfortable are you with your dad's doctor? Is he a specialist or a family doc? If a family doctor, maybe you could convince him and your mom that your dad should see a specialist in Greensboro, preferably a neuropsychiatrist. It would just be a short step from there to finding hospital or dementia care for your dad. If you do this, tell the specialist's office everything. This honestly does sound like an emergency and worthy of their making time in their schedule for him. Worst case, call an ambulance or take your dad to the ER (something I never advise but in your case I think probably all you have left to you). Once in an ER, they are unlikely to send your dad home if there is any doubt as to his condition. It doesn't have to be the local ER. If you have to drive a few hours to get to one that is in a better position to help, and you can do so safely, do it. Whatever you need to do. One of the things about this disease is that you have to fight for proper care almost every step of the way. It sounds like your dad is taking (or supposed to be taking) some pretty heavy medications. Can you get a second opinion, again from a specialist, about his treatment? How difficult would it be to get your dad to see someone at UNC? If your mom is concerned about finances, it is time to talk to an eldercare attorney if they haven't done so already. Her portion of their assets does need to be protected. Regardless of what they own now or how comfortable their assets are, Lewy can eat it up fast. Your mom is allowed to keep a defined portion of their assets if and when it comes to applying for Medicaid. You need a lawyer and properly drawn up documents for this. Your mom won't be able to keep wealth, but she will be allowed to keep enough to be comfortable. Also, medical directives and power of attorney need to be decided. If your mom is not in a good position to handle these roles, suggest that you or your sister take them on. But know that they are very demanding, even without a spouse to be concerned with. Things are going to be tough for you and your sister for a while. Lean on each other and your partners. Lean on your " parental unit. " Realize that you can only do what you are allowed to do. If your dad won't take his meds or your mom has no ability to be a caregiver, you can't fix that. They both have to accept whatever alternatives are available to them. You sound young. Too young to have to deal with this. But there you are. Do not take on more than you can handle. If that means a change in your parents' living situation, so be it. There may be a few painful weeks or months for them before they figure it out, but they will figure it out. Do not spend your own money on their care. If they do get financially desperate, there are resources available. You can not ruin your own security, your own future, to protect your mom's pride. Believe me. I learned this the hard way. Do not let your parents' crisis threaten your own relationships. You need your friends. Your boyfriend. Lewy is hard on relationships. Lewy can break up families. Lewy can cause devoted couples to split up. Or Lewy can bring you all closer together and help even your mother find talents she never knew she had. Pay attention to how Lewy affects all of you. And, , wow. A 2-pound baby. You survived that. You can survive this, too. Do not hesitate to ask for help. Most people want to help, they just don't know what to do. Best wishes. Kate > ** > > > > Apparently overnight he seems to have gotten even worse, he was in the > middle of feeding the horses & someone slowed down at the turn near there > house & he ran out into the street yelling at them & left the gate open & a > horse got out. luckily the farrier was there & caught the horse. She talked > to the Dr again today & he upped him to 12 pills a day & added thorazadone. > if he was refusing to take 4 pills 2x a day i'm not sure how he's going to > take 13 pills a day but the Dr said he'd call my dad & explain that he > prescribed the pills & my mom isn't trying to poison him. We're supposed to > wait until Sunday & see how he is. My boyfriend & I are headed up there for > the weekend to help take care of him. > > From what I gather they aren't sure there will be a bed for him at the > geriatric psych ward which is why they're trying to hold off. > > Their farm is a hobby farm, so not huge but they do have tractors, tools & > 2 horses that make me concerned for his safety alone for 8-12 hours a day & > he lives at a bend in a road in a busy neighborhood so people are always > driving by & they have to slow at the bend in the road. > > It's a shame that my mom's best friend who is living on the farm that all > his paranoia is directed towards is a nurse who worked in a > dementia/alzheimers wing of a nursing home for 10 years & is the best > person to help care for him & he won't let her near him. He even chased her > off the lawnmower yesterday. > > As for my mom's caregiving, she's the first to admit she isn't one, when I > was born I was barely 2 lbs & she couldn't handle caring for me so her best > friend (the one that still lives with them) raised me as her own. She > doesn't do well with emotions or not being in control. > > My boyfriend & I come on the weekends when we can & when dad had his last > bad string of episodes last year I spent 2 months on the farm caring for > him & I'll be there for most of March doing the same thing. I'm lucky that > I work for myself (I'm a photographer) so I have the luxury of working from > a different city for a month at a time if I need to. > > I own a house in Greensboro that's now a rental & I would LOVE for them to > move into it, he could walk to the grocery store (it's 1000 feet away) & > there wouldn't be farm upkeep for them to handle. Unfortunately they built > an expensive hobby farm worth 1+ million dollars at the height of the > market & my mom refuses to sell it or rent it. There is also the issue that > whatever money they make from the sale a nursing or skilled care facility > can take. > > My mom is one of those " keeping up appearances " people. she drives a brand > new lexus hybrid & can't afford it & built a million dollar home she can't > afford so she's now having to work 12 hours a day/7 days a week to keep up > with her lifestyle & doesn't have any money left over to care for dad. We > tried before they built the farm to move into my house but it wasn't big > enough for my mom & the neighborhood wasn't nice enough. > > sorry, i know I sound harsh on my mom but my sister & i feel like we're > dealing with a LBD patient & a child instead of our parents. They've been > living outside their means for so long that now when they need the extra > money they're spending on a 4400 sf house & 3 expensive cars they don't > have money to spare. > > > > > > > ** > > > > > > > > > > hello all, I'm . My dad was diagnosed with LBD after becoming > > > increasingly paranoid & hallucinating. > > > > > > He was on every drug LBD patients aren't supposed to take until we > found a > > > wonderful neurologist at UNC that diagnosed his LBD. He has recently > > > (earlier this week) slipped back into the extreme > paranoia/hallucinations > > > and we're not sure if it's him not taking his pills (my mother doesn't > > > always watch him) or if the meds just aren't holding him. He was just > > > started on heavy doses of seraquil (10 pills a day!) to combat the > paranoia > > > & hallucinations but it's not helping yet. > > > > > > I think one of my parent's main issues is their age gap, my mom is 7 > years > > > younger & still working full time while my dad has been retired for 5 > > > years. My dad has gotten to the point where he needs constant > supervision & > > > cannot ride in a car without outbursts & grabbing the steering wheel so > > > he's home alone for 8-12 hours at a time on a farm. His cognitive > abilities > > > are still very much there but he is hallucinating 90% of the time, he > can > > > pull it together enough to have a 2 minute conversation with someone > on the > > > phone & sound normal, but that's about it. > > > > > > I'm the closest child, I live 2 hours away but I'm also the youngest > (I'm > > > 29) and I'm having a hard time convincing my mother to work from home & > > > help take care of my dad, he's calmer when she stays with him. She > would > > > rather him go into a geriatric psych ward. It's extremely frustrating > for > > > my sister & I that my mom is not willing to help my father in any way, > > > claiming she's not a caregiver. I also have two step siblings who are > 20 > > > years older than me who live 10-12 hours away & it's hard to handle > half > > > siblings & my mother together. His 2 sisters live 2 hours away but they > > > don't really understand what's going on even though they've seen him > at his > > > worst. > > > > > > My parents have a horse farm & my mom's best friend lives above their > > > garage & helps take care of the farm and most of his paranoia & > > > hallucinations are directed towards her (she's opening back accounts in > > > their name, sneaking into the house at night trying to stab my dad with > > > needles, stealing their new truck, etc) and every time she comes & goes > > > (she refuses to come into the main house anymore) it sets him off. We > do > > > our best to not talk about anything that will trigger his paranoia but > > > sometimes it's out of our control (a week ago neighborhood kids took my > > > parent's canoe into their pond on their day off school, which set him > off) > > > > > > I am hoping that the new higher levels of seraquil & the possibility of > > > adding clonipan will help level him out again, he did have about 8 > months > > > of being almost back to normal after his initial diagnosis. There is > no LBD > > > support group in Charlotte (where I live) but there is one in > Greensboro, > > > where my parents live. > > > > > > Any advice on spousal caregiving for my mom? My boyfriend & I sat her > down > > > & went over the suggestions on interacting on the LBD website & she > said > > > she's trying to remain calm & not yell at him or get to aggravated > with him > > > after talking to us. > > > > > > Thanks! > > > > > > > > > > > > > > > > > > > > > > > -- > > Kate Knapp, OIT > > University of Minnesota > > > > > > You were born with certain gifts and talents. > > In kindergarten you were taught to share. > > The world needs all of the gifts it can get. > > Don�t be shy. > > > > > > Quote Link to comment Share on other sites More sharing options...
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