Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 : How beautifully put!!! Way to go!! We were at the Cleveland Clinic in April. We are making a change and I will e-mail the dr with updates. Keep up the wonderful attitude!! Vivian > ** > > > We just returned from the Cleveland Clinic. My husband's meds weren't > changed, which is a good thing. Anytime they don't need to increase > anything, I always figure that's good. While making the 5 hour drive home, > I had an epiphany of sorts: Managing a progressive illness is really about > medication, adaptation and attitude. > > The medicines they have will not cure the disease. The best we can hope > for is slowing it or making it easier to deal with. The disease will march > ahead, claiming brain cells as little battles of victory as it proceeds > with its destructive path. Not too unlike Sherman's march to the sea during > the civil war. > > That's where the adaptive part comes into the picture. Luckily, a disease > like this one doesn't happen overnight. It eats away in little increments > allowing time for the patient and family to adapt. I often have to remind > my husband (and myself) that the disease hasn't stopped us from doing > anything we love to do. We liked to travel—still can. Only now we no longer > use our large 5th wheel camper. We bought a minivan and stay in hotels. > When his driving became scary, I took over that chore, BUT we still travel. > We can still eat out and fish and play with grandchildren. > > And really, does it matter when he puts salad dressing on his spaghetti or > answers the remote control instead of the phone? Does it matter that I have > to help him sign in to his email (every time) or that he has trouble > unlocking his car door to get out? Who does it harm when he turns the phone > backwards or orders me a cup of coffee when I don't drink coffee? > > None of those things really matter. When he can no longer tie his shoes, > we'll buy slip-ons. When he can no longer button his shirts, we'll get > pullovers. I know that eventually his condition will stop our travels and > evenings out with friends, but until then, we adapt and enjoy every moment > we have. > > That's where the attitude thing enters the picture. When the doctor asked > my husband how he was doing, he said, " I think I'm doing well. " He said it > with a smile and he meant it. > > His answer surprised me. Things are definitely worse than they were 6 > months ago, but my constant insistence that we're doing fine has evidently > sunken in. And that's when it hit me. > > We really are doing fine. We really are adapting and moving ahead with > life. In the big picture, we're better off than many of our friends who > spend their lives fretting over small stuff that really isn't important at > all. > > Life gave us a lemon. We might not be able to make lemonade, but a glass > of water with a twist of lemon will still satisfy our thirst. And that's > the point, isn't it? > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in > Dec of 2011 > > > -- Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 Dear , What a wonderful attitude. Squeeze and savor every drop of life while you can. Helene in NY > > We just returned from the Cleveland Clinic. My husband's meds weren't changed, which is a good thing. Anytime they don't need to increase anything, I always figure that's good. While making the 5 hour drive home, I had an epiphany of sorts: Managing a progressive illness is really about medication, adaptation and attitude. > > The medicines they have will not cure the disease. The best we can hope for is slowing it or making it easier to deal with. The disease will march ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path. Not too unlike Sherman's march to the sea during the civil war. > > That's where the adaptive part comes into the picture. Luckily, a disease like this one doesn't happen overnight. It eats away in little increments allowing time for the patient and family to adapt. I often have to remind my husband (and myself) that the disease hasn't stopped us from doing anything we love to do. We liked to travel—still can. Only now we no longer use our large 5th wheel camper. We bought a minivan and stay in hotels. When his driving became scary, I took over that chore, BUT we still travel. We can still eat out and fish and play with grandchildren. > > And really, does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee? > > None of those things really matter. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I know that eventually his condition will stop our travels and evenings out with friends, but until then, we adapt and enjoy every moment we have. > > That's where the attitude thing enters the picture. When the doctor asked my husband how he was doing, he said, " I think I'm doing well. " He said it with a smile and he meant it. > > His answer surprised me. Things are definitely worse than they were 6 months ago, but my constant insistence that we're doing fine has evidently sunken in. And that's when it hit me. > > We really are doing fine. We really are adapting and moving ahead with life. In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. > > Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it? > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in Dec of 2011 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 Hi , It's wonderful to read your very good attitude. You are lucky that your husband is still able to communicate with you and you can manage to have a good life together. I am lucky to have had some good times with my mom in the first stages. But our family thankfully didn't lose sight of the prognosis for the disease and we tried out best to plan for the future ! I'm glad we did ! You sound like you deeply love your husband - he is very lucky !! Judy > ** > > > We just returned from the Cleveland Clinic. My husband's meds weren't > changed, which is a good thing. Anytime they don't need to increase > anything, I always figure that's good. While making the 5 hour drive home, > I had an epiphany of sorts: Managing a progressive illness is really about > medication, adaptation and attitude. > > The medicines they have will not cure the disease. The best we can hope > for is slowing it or making it easier to deal with. The disease will march > ahead, claiming brain cells as little battles of victory as it proceeds > with its destructive path. Not too unlike Sherman's march to the sea during > the civil war. > > That's where the adaptive part comes into the picture. Luckily, a disease > like this one doesn't happen overnight. It eats away in little increments > allowing time for the patient and family to adapt. I often have to remind > my husband (and myself) that the disease hasn't stopped us from doing > anything we love to do. We liked to travel—still can. Only now we no longer > use our large 5th wheel camper. We bought a minivan and stay in hotels. > When his driving became scary, I took over that chore, BUT we still travel. > We can still eat out and fish and play with grandchildren. > > And really, does it matter when he puts salad dressing on his spaghetti or > answers the remote control instead of the phone? Does it matter that I have > to help him sign in to his email (every time) or that he has trouble > unlocking his car door to get out? Who does it harm when he turns the phone > backwards or orders me a cup of coffee when I don't drink coffee? > > None of those things really matter. When he can no longer tie his shoes, > we'll buy slip-ons. When he can no longer button his shirts, we'll get > pullovers. I know that eventually his condition will stop our travels and > evenings out with friends, but until then, we adapt and enjoy every moment > we have. > > That's where the attitude thing enters the picture. When the doctor asked > my husband how he was doing, he said, " I think I'm doing well. " He said it > with a smile and he meant it. > > His answer surprised me. Things are definitely worse than they were 6 > months ago, but my constant insistence that we're doing fine has evidently > sunken in. And that's when it hit me. > > We really are doing fine. We really are adapting and moving ahead with > life. In the big picture, we're better off than many of our friends who > spend their lives fretting over small stuff that really isn't important at > all. > > Life gave us a lemon. We might not be able to make lemonade, but a glass > of water with a twist of lemon will still satisfy our thirst. And that's > the point, isn't it? > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in > Dec of 2011 > > > -- Sent from Gmail Mobile Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 Hi , It's wonderful to read your very good attitude. You are lucky that your husband is still able to communicate with you and you can manage to have a good life together. I am lucky to have had some good times with my mom in the first stages. But our family thankfully didn't lose sight of the prognosis for the disease and we tried out best to plan for the future ! I'm glad we did ! You sound like you deeply love your husband - he is very lucky !! Judy > ** > > > We just returned from the Cleveland Clinic. My husband's meds weren't > changed, which is a good thing. Anytime they don't need to increase > anything, I always figure that's good. While making the 5 hour drive home, > I had an epiphany of sorts: Managing a progressive illness is really about > medication, adaptation and attitude. > > The medicines they have will not cure the disease. The best we can hope > for is slowing it or making it easier to deal with. The disease will march > ahead, claiming brain cells as little battles of victory as it proceeds > with its destructive path. Not too unlike Sherman's march to the sea during > the civil war. > > That's where the adaptive part comes into the picture. Luckily, a disease > like this one doesn't happen overnight. It eats away in little increments > allowing time for the patient and family to adapt. I often have to remind > my husband (and myself) that the disease hasn't stopped us from doing > anything we love to do. We liked to travel—still can. Only now we no longer > use our large 5th wheel camper. We bought a minivan and stay in hotels. > When his driving became scary, I took over that chore, BUT we still travel. > We can still eat out and fish and play with grandchildren. > > And really, does it matter when he puts salad dressing on his spaghetti or > answers the remote control instead of the phone? Does it matter that I have > to help him sign in to his email (every time) or that he has trouble > unlocking his car door to get out? Who does it harm when he turns the phone > backwards or orders me a cup of coffee when I don't drink coffee? > > None of those things really matter. When he can no longer tie his shoes, > we'll buy slip-ons. When he can no longer button his shirts, we'll get > pullovers. I know that eventually his condition will stop our travels and > evenings out with friends, but until then, we adapt and enjoy every moment > we have. > > That's where the attitude thing enters the picture. When the doctor asked > my husband how he was doing, he said, " I think I'm doing well. " He said it > with a smile and he meant it. > > His answer surprised me. Things are definitely worse than they were 6 > months ago, but my constant insistence that we're doing fine has evidently > sunken in. And that's when it hit me. > > We really are doing fine. We really are adapting and moving ahead with > life. In the big picture, we're better off than many of our friends who > spend their lives fretting over small stuff that really isn't important at > all. > > Life gave us a lemon. We might not be able to make lemonade, but a glass > of water with a twist of lemon will still satisfy our thirst. And that's > the point, isn't it? > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in > Dec of 2011 > > > -- Sent from Gmail Mobile Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2012 Report Share Posted June 13, 2012 Hi , It's wonderful to read your very good attitude. You are lucky that your husband is still able to communicate with you and you can manage to have a good life together. I am lucky to have had some good times with my mom in the first stages. But our family thankfully didn't lose sight of the prognosis for the disease and we tried out best to plan for the future ! I'm glad we did ! You sound like you deeply love your husband - he is very lucky !! Judy > ** > > > We just returned from the Cleveland Clinic. My husband's meds weren't > changed, which is a good thing. Anytime they don't need to increase > anything, I always figure that's good. While making the 5 hour drive home, > I had an epiphany of sorts: Managing a progressive illness is really about > medication, adaptation and attitude. > > The medicines they have will not cure the disease. The best we can hope > for is slowing it or making it easier to deal with. The disease will march > ahead, claiming brain cells as little battles of victory as it proceeds > with its destructive path. Not too unlike Sherman's march to the sea during > the civil war. > > That's where the adaptive part comes into the picture. Luckily, a disease > like this one doesn't happen overnight. It eats away in little increments > allowing time for the patient and family to adapt. I often have to remind > my husband (and myself) that the disease hasn't stopped us from doing > anything we love to do. We liked to travel—still can. Only now we no longer > use our large 5th wheel camper. We bought a minivan and stay in hotels. > When his driving became scary, I took over that chore, BUT we still travel. > We can still eat out and fish and play with grandchildren. > > And really, does it matter when he puts salad dressing on his spaghetti or > answers the remote control instead of the phone? Does it matter that I have > to help him sign in to his email (every time) or that he has trouble > unlocking his car door to get out? Who does it harm when he turns the phone > backwards or orders me a cup of coffee when I don't drink coffee? > > None of those things really matter. When he can no longer tie his shoes, > we'll buy slip-ons. When he can no longer button his shirts, we'll get > pullovers. I know that eventually his condition will stop our travels and > evenings out with friends, but until then, we adapt and enjoy every moment > we have. > > That's where the attitude thing enters the picture. When the doctor asked > my husband how he was doing, he said, " I think I'm doing well. " He said it > with a smile and he meant it. > > His answer surprised me. Things are definitely worse than they were 6 > months ago, but my constant insistence that we're doing fine has evidently > sunken in. And that's when it hit me. > > We really are doing fine. We really are adapting and moving ahead with > life. In the big picture, we're better off than many of our friends who > spend their lives fretting over small stuff that really isn't important at > all. > > Life gave us a lemon. We might not be able to make lemonade, but a glass > of water with a twist of lemon will still satisfy our thirst. And that's > the point, isn't it? > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in > Dec of 2011 > > > -- Sent from Gmail Mobile Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 LOVE THIS Thank you for sharing your epiphany! Two requests: 1. with your permission I'd like to save this to the Links section -- this post shouldn't get lost 2. this post should also be shared via LBD Stories -- http://www.lbdstories.com/ -- so it reaches more people -- all you do is copy / paste this post on their online form -- if interested and you don't want to spend the time doing it, I can do it for you. THANKS again > > We just returned from the Cleveland Clinic. My husband's meds weren't changed, which is a good thing. Anytime they don't need to increase anything, I always figure that's good. While making the 5 hour drive home, I had an epiphany of sorts: Managing a progressive illness is really about medication, adaptation and attitude. > > The medicines they have will not cure the disease. The best we can hope for is slowing it or making it easier to deal with. The disease will march ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path. Not too unlike Sherman's march to the sea during the civil war. > > That's where the adaptive part comes into the picture. Luckily, a disease like this one doesn't happen overnight. It eats away in little increments allowing time for the patient and family to adapt. I often have to remind my husband (and myself) that the disease hasn't stopped us from doing anything we love to do. We liked to travel—still can. Only now we no longer use our large 5th wheel camper. We bought a minivan and stay in hotels. When his driving became scary, I took over that chore, BUT we still travel. We can still eat out and fish and play with grandchildren. > > And really, does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee? > > None of those things really matter. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I know that eventually his condition will stop our travels and evenings out with friends, but until then, we adapt and enjoy every moment we have. > > That's where the attitude thing enters the picture. When the doctor asked my husband how he was doing, he said, " I think I'm doing well. " He said it with a smile and he meant it. > > His answer surprised me. Things are definitely worse than they were 6 months ago, but my constant insistence that we're doing fine has evidently sunken in. And that's when it hit me. > > We really are doing fine. We really are adapting and moving ahead with life. In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. > > Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it? > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in Dec of 2011 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 LOVE THIS Thank you for sharing your epiphany! Two requests: 1. with your permission I'd like to save this to the Links section -- this post shouldn't get lost 2. this post should also be shared via LBD Stories -- http://www.lbdstories.com/ -- so it reaches more people -- all you do is copy / paste this post on their online form -- if interested and you don't want to spend the time doing it, I can do it for you. THANKS again > > We just returned from the Cleveland Clinic. My husband's meds weren't changed, which is a good thing. Anytime they don't need to increase anything, I always figure that's good. While making the 5 hour drive home, I had an epiphany of sorts: Managing a progressive illness is really about medication, adaptation and attitude. > > The medicines they have will not cure the disease. The best we can hope for is slowing it or making it easier to deal with. The disease will march ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path. Not too unlike Sherman's march to the sea during the civil war. > > That's where the adaptive part comes into the picture. Luckily, a disease like this one doesn't happen overnight. It eats away in little increments allowing time for the patient and family to adapt. I often have to remind my husband (and myself) that the disease hasn't stopped us from doing anything we love to do. We liked to travel—still can. Only now we no longer use our large 5th wheel camper. We bought a minivan and stay in hotels. When his driving became scary, I took over that chore, BUT we still travel. We can still eat out and fish and play with grandchildren. > > And really, does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee? > > None of those things really matter. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I know that eventually his condition will stop our travels and evenings out with friends, but until then, we adapt and enjoy every moment we have. > > That's where the attitude thing enters the picture. When the doctor asked my husband how he was doing, he said, " I think I'm doing well. " He said it with a smile and he meant it. > > His answer surprised me. Things are definitely worse than they were 6 months ago, but my constant insistence that we're doing fine has evidently sunken in. And that's when it hit me. > > We really are doing fine. We really are adapting and moving ahead with life. In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. > > Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it? > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in Dec of 2011 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 LOVE THIS Thank you for sharing your epiphany! Two requests: 1. with your permission I'd like to save this to the Links section -- this post shouldn't get lost 2. this post should also be shared via LBD Stories -- http://www.lbdstories.com/ -- so it reaches more people -- all you do is copy / paste this post on their online form -- if interested and you don't want to spend the time doing it, I can do it for you. THANKS again > > We just returned from the Cleveland Clinic. My husband's meds weren't changed, which is a good thing. Anytime they don't need to increase anything, I always figure that's good. While making the 5 hour drive home, I had an epiphany of sorts: Managing a progressive illness is really about medication, adaptation and attitude. > > The medicines they have will not cure the disease. The best we can hope for is slowing it or making it easier to deal with. The disease will march ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path. Not too unlike Sherman's march to the sea during the civil war. > > That's where the adaptive part comes into the picture. Luckily, a disease like this one doesn't happen overnight. It eats away in little increments allowing time for the patient and family to adapt. I often have to remind my husband (and myself) that the disease hasn't stopped us from doing anything we love to do. We liked to travel—still can. Only now we no longer use our large 5th wheel camper. We bought a minivan and stay in hotels. When his driving became scary, I took over that chore, BUT we still travel. We can still eat out and fish and play with grandchildren. > > And really, does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee? > > None of those things really matter. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I know that eventually his condition will stop our travels and evenings out with friends, but until then, we adapt and enjoy every moment we have. > > That's where the attitude thing enters the picture. When the doctor asked my husband how he was doing, he said, " I think I'm doing well. " He said it with a smile and he meant it. > > His answer surprised me. Things are definitely worse than they were 6 months ago, but my constant insistence that we're doing fine has evidently sunken in. And that's when it hit me. > > We really are doing fine. We really are adapting and moving ahead with life. In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. > > Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it? > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in Dec of 2011 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 , Outstanding. This is something I need to constantly review. Thank you so much for sharing.  Jeff When you feel like giving up, remember why you held on for so long in the first place. " ~ Unknown >________________________________ > >To: LBDcaregivers >Sent: Wednesday, June 13, 2012 3:37 PM >Subject: An epiphany > > > >We just returned from the Cleveland Clinic. My husband's meds weren't changed, which is a good thing. Anytime they don't need to increase anything, I always figure that's good. While making the 5 hour drive home, I had an epiphany of sorts: Managing a progressive illness is really about medication, adaptation and attitude. > >The medicines they have will not cure the disease. The best we can hope for is slowing it or making it easier to deal with. The disease will march ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path. Not too unlike Sherman's march to the sea during the civil war. > >That's where the adaptive part comes into the picture. Luckily, a disease like this one doesn't happen overnight. It eats away in little increments allowing time for the patient and family to adapt. I often have to remind my husband (and myself) that the disease hasn't stopped us from doing anything we love to do. We liked to travel—still can. Only now we no longer use our large 5th wheel camper. We bought a minivan and stay in hotels. When his driving became scary, I took over that chore, BUT we still travel. We can still eat out and fish and play with grandchildren. > >And really, does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee? > >None of those things really matter. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I know that eventually his condition will stop our travels and evenings out with friends, but until then, we adapt and enjoy every moment we have. > >That's where the attitude thing enters the picture. When the doctor asked my husband how he was doing, he said, " I think I'm doing well. " He said it with a smile and he meant it. > >His answer surprised me. Things are definitely worse than they were 6 months ago, but my constant insistence that we're doing fine has evidently sunken in. And that's when it hit me. > >We really are doing fine. We really are adapting and moving ahead with life. In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. > >Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it? > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in Dec of 2011 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 I'm glad this has struck a chord with others. That's why I decided to share. Of course, you may upload to the links. I'll put it on the LBD stories.  ________________________________ To: LBDcaregivers Sent: Thursday, June 14, 2012 6:14 AM Subject: Re: An epiphany  LOVE THIS Thank you for sharing your epiphany! Two requests: 1. with your permission I'd like to save this to the Links section -- this post shouldn't get lost 2. this post should also be shared via LBD Stories -- http://www.lbdstories.com/ -- so it reaches more people -- all you do is copy / paste this post on their online form -- if interested and you don't want to spend the time doing it, I can do it for you. THANKS again > > We just returned from the Cleveland Clinic. My husband's meds weren't changed, which is a good thing. Anytime they don't need to increase anything, I always figure that's good. While making the 5 hour drive home, I had an epiphany of sorts: Managing a progressive illness is really about medication, adaptation and attitude. > > The medicines they have will not cure the disease. The best we can hope for is slowing it or making it easier to deal with. The disease will march ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path. Not too unlike Sherman's march to the sea during the civil war. > > That's where the adaptive part comes into the picture. Luckily, a disease like this one doesn't happen overnight. It eats away in little increments allowing time for the patient and family to adapt. I often have to remind my husband (and myself) that the disease hasn't stopped us from doing anything we love to do. We liked to travel—still can. Only now we no longer use our large 5th wheel camper. We bought a minivan and stay in hotels. When his driving became scary, I took over that chore, BUT we still travel. We can still eat out and fish and play with grandchildren. > > And really, does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee? > > None of those things really matter. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I know that eventually his condition will stop our travels and evenings out with friends, but until then, we adapt and enjoy every moment we have. > > That's where the attitude thing enters the picture. When the doctor asked my husband how he was doing, he said, " I think I'm doing well. " He said it with a smile and he meant it. > > His answer surprised me. Things are definitely worse than they were 6 months ago, but my constant insistence that we're doing fine has evidently sunken in. And that's when it hit me. > > We really are doing fine. We really are adapting and moving ahead with life. In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. > > Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it? > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in Dec of 2011 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 I'm very aware of the prognosis. We are in the process of selling our home and moving into a retirement community that has a wonderful assited care componant. I think the situation is different when dealing with a parent as opposed to a spouse.  My father died in October with Parkinson's. He had dementia toward the end. He was wheelchair bound the last 3 years of his life and I helped with caregiving duties. He was 24 years older than me and my view on his situation was very different than the one I have with my husband. My husband's illness directly affects my life. Whenever I left my parent's home, I was able to return to mine and even though my husband was dx almost 4 years ago, it was still a releif to get away from the constant care situation my mother was living with 24/7. Mom got no relief.  My epiphany was largely an adjustment in my view on this illness. It's tough to not feel angry with selling my beautiful 2 story n home and moving into a 3 room apartment when I am only 54. There are times when I cried myself to sleep, not only for my husband but for me. I felt as though I was not only losing my husband, but my home and a big chunk of my life. It's not fair, but it is what it is.  I guess the purpose of my post was to remind myself that life really isn't horrible. It's different, but no one is beating us, we aren't living on the street. We have plenty to eat and still have the ability to enjoy life. When the day comes (and I know it will) that he is bed-ridden and unable to enjoy much of anything, he'll be receiving the best care available just down the hall from my apartment. I have to remind myself to prepare for the future, live for the moment and don't sweat the small stuff. Just a few moments ago, he couldn't figure out how to get his cell phone out of the pocket of his windsuit. (He'd zipped it in and forgotten).There was a time when that sort of thing would have upset me.  But, in the big scheme of things, that's small stuff.   ________________________________ To: " LBDcaregivers " <LBDcaregivers > Sent: Wednesday, June 13, 2012 9:27 PM Subject: Re: An epiphany Hi , It's wonderful to read your very good attitude. You are lucky that your husband is still able to communicate with you and you can manage to have a good life together. I am lucky to have had some good times with my mom in the first stages. But our family thankfully didn't lose sight of the prognosis for the disease and we tried out best to plan for the future ! I'm glad we did ! You sound like you deeply love your husband - he is very lucky !! Judy > ** > > > We just returned from the Cleveland Clinic. My husband's meds weren't > changed, which is a good thing. Anytime they don't need to increase > anything, I always figure that's good. While making the 5 hour drive home, > I had an epiphany of sorts: Managing a progressive illness is really about > medication, adaptation and attitude. > > The medicines they have will not cure the disease. The best we can hope > for is slowing it or making it easier to deal with. The disease will march > ahead, claiming brain cells as little battles of victory as it proceeds > with its destructive path. Not too unlike Sherman's march to the sea during > the civil war. > > That's where the adaptive part comes into the picture. Luckily, a disease > like this one doesn't happen overnight. It eats away in little increments > allowing time for the patient and family to adapt. I often have to remind > my husband (and myself) that the disease hasn't stopped us from doing > anything we love to do. We liked to travel—still can. Only now we no longer > use our large 5th wheel camper. We bought a minivan and stay in hotels. > When his driving became scary, I took over that chore, BUT we still travel. > We can still eat out and fish and play with grandchildren. > > And really, does it matter when he puts salad dressing on his spaghetti or > answers the remote control instead of the phone? Does it matter that I have > to help him sign in to his email (every time) or that he has trouble > unlocking his car door to get out? Who does it harm when he turns the phone > backwards or orders me a cup of coffee when I don't drink coffee? > > None of those things really matter. When he can no longer tie his shoes, > we'll buy slip-ons. When he can no longer button his shirts, we'll get > pullovers. I know that eventually his condition will stop our travels and > evenings out with friends, but until then, we adapt and enjoy every moment > we have. > > That's where the attitude thing enters the picture. When the doctor asked > my husband how he was doing, he said, " I think I'm doing well. " He said it > with a smile and he meant it. > > His answer surprised me. Things are definitely worse than they were 6 > months ago, but my constant insistence that we're doing fine has evidently > sunken in. And that's when it hit me. > > We really are doing fine. We really are adapting and moving ahead with > life. In the big picture, we're better off than many of our friends who > spend their lives fretting over small stuff that really isn't important at > all. > > Life gave us a lemon. We might not be able to make lemonade, but a glass > of water with a twist of lemon will still satisfy our thirst. And that's > the point, isn't it? > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in > Dec of 2011 > > > -- Sent from Gmail Mobile Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 I tried to copy and paste onto LBD stories, but couldn't get it to work for me. If you don't mind doing that, I'd appreciate it. Thanks.   ________________________________ To: LBDcaregivers Sent: Thursday, June 14, 2012 6:14 AM Subject: Re: An epiphany  LOVE THIS Thank you for sharing your epiphany! Two requests: 1. with your permission I'd like to save this to the Links section -- this post shouldn't get lost 2. this post should also be shared via LBD Stories -- http://www.lbdstories.com/ -- so it reaches more people -- all you do is copy / paste this post on their online form -- if interested and you don't want to spend the time doing it, I can do it for you. THANKS again > > We just returned from the Cleveland Clinic. My husband's meds weren't changed, which is a good thing. Anytime they don't need to increase anything, I always figure that's good. While making the 5 hour drive home, I had an epiphany of sorts: Managing a progressive illness is really about medication, adaptation and attitude. > > The medicines they have will not cure the disease. The best we can hope for is slowing it or making it easier to deal with. The disease will march ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path. Not too unlike Sherman's march to the sea during the civil war. > > That's where the adaptive part comes into the picture. Luckily, a disease like this one doesn't happen overnight. It eats away in little increments allowing time for the patient and family to adapt. I often have to remind my husband (and myself) that the disease hasn't stopped us from doing anything we love to do. We liked to travel—still can. Only now we no longer use our large 5th wheel camper. We bought a minivan and stay in hotels. When his driving became scary, I took over that chore, BUT we still travel. We can still eat out and fish and play with grandchildren. > > And really, does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee? > > None of those things really matter. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I know that eventually his condition will stop our travels and evenings out with friends, but until then, we adapt and enjoy every moment we have. > > That's where the attitude thing enters the picture. When the doctor asked my husband how he was doing, he said, " I think I'm doing well. " He said it with a smile and he meant it. > > His answer surprised me. Things are definitely worse than they were 6 months ago, but my constant insistence that we're doing fine has evidently sunken in. And that's when it hit me. > > We really are doing fine. We really are adapting and moving ahead with life. In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. > > Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it? > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in Dec of 2011 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 Wow, . You're experiencing all aspects of all of this. I think you are absolutely right about parent caregiving vs. spouse caregiving. And then there is parent caregiving in your own home, which is what I did until we moved Mom into a dementia unit a year and a half ago (she passed in February). That's somewhere between the two. You have the 24/7 care to deal with - you can't leave and go to another home. But it is also your parent and if they have had a full life, you can reconcile to the loss - not easily, but the whole thing, for me, was not unexpected and I could deal with it. I've never married, but just reading what others are going through with spouses, regardless of age, makes it clear to me that it is indeed more devastating when it is a spouse. You are right. You lose your own life, or the life you expected to have. In my case, I did the same to some extent with Mom living with me. But I also expected it, since both of her parents had some form of dementia. I also think it must be even harder when you and your spouse are younger than you would expect someone with dementia to be. You see your dreams for the future fall apart, or at least alter. If you were looking forward to retirement, you may have to now retire earlier and everything you were looking forward to doing as a couple changes drastically. My heart goes out to everyone caregiving for a spouse. When you were young you probably didn't picture this as " in sickness and in health. " Bless you for staying and for caring. I hope your families see your need are are there to help. Kate > ** > > > I'm very aware of the prognosis. We are in the process of selling our home > and moving into a retirement community that has a wonderful assited care > componant. I think the situation is different when dealing with a parent as > opposed to a spouse. > > My father died in October with Parkinson's. He had dementia toward the > end. He was wheelchair bound the last 3 years of his life and I helped > with caregiving duties. He was 24 years older than me and my view on his > situation was very different than the one I have with my husband. My > husband's illness directly affects my life. Whenever I left my parent's > home, I was able to return to mine and even though my husband was dx almost > 4 years ago, it was still a releif to get away from the constant care > situation my mother was living with 24/7. Mom got no relief. > > My epiphany was largely an adjustment in my view on this illness. It's > tough to not feel angry with selling my beautiful 2 story n home > and moving into a 3 room apartment when I am only 54. There are times when > I cried myself to sleep, not only for my husband but for me. I felt as > though I was not only losing my husband, but my home and a big chunk of my > life. It's not fair, but it is what it is. > > I guess the purpose of my post was to remind myself that life really isn't > horrible. It's different, but no one is beating us, we aren't living on the > street. We have plenty to eat and still have the ability to enjoy life. > When the day comes (and I know it will) that he is bed-ridden and unable to > enjoy much of anything, he'll be receiving the best care available just > down the hall from my apartment. I have to remind myself to prepare for the > future, live for the moment and don't sweat the small stuff. Just a few > moments ago, he couldn't figure out how to get his cell phone out of the > pocket of his windsuit. (He'd zipped it in and forgotten).There was a time > when that sort of thing would have upset me. But, in the big scheme of > things, that's small stuff. > > > > > > ________________________________ > > To: " LBDcaregivers " <LBDcaregivers > > Sent: Wednesday, June 13, 2012 9:27 PM > Subject: Re: An epiphany > > Hi , > > It's wonderful to read your very good attitude. You are lucky that your > husband is still able to communicate with you and you can manage to have a > good life together. > I am lucky to have had some good times with my mom in the first stages. But > our family thankfully didn't lose sight of the prognosis for the disease > and we tried out best to plan for the future ! I'm glad we did ! > You sound like you deeply love your husband - he is very lucky !! > > Judy > > > > > ** > > > > > > We just returned from the Cleveland Clinic. My husband's meds weren't > > changed, which is a good thing. Anytime they don't need to increase > > anything, I always figure that's good. While making the 5 hour drive > home, > > I had an epiphany of sorts: Managing a progressive illness is really > about > > medication, adaptation and attitude. > > > > The medicines they have will not cure the disease. The best we can hope > > for is slowing it or making it easier to deal with. The disease will > march > > ahead, claiming brain cells as little battles of victory as it proceeds > > with its destructive path. Not too unlike Sherman's march to the sea > during > > the civil war. > > > > That's where the adaptive part comes into the picture. Luckily, a disease > > like this one doesn't happen overnight. It eats away in little increments > > allowing time for the patient and family to adapt. I often have to remind > > my husband (and myself) that the disease hasn't stopped us from doing > > anything we love to do. We liked to travel—still can. Only now we no > longer > > use our large 5th wheel camper. We bought a minivan and stay in hotels. > > When his driving became scary, I took over that chore, BUT we still > travel. > > We can still eat out and fish and play with grandchildren. > > > > And really, does it matter when he puts salad dressing on his spaghetti > or > > answers the remote control instead of the phone? Does it matter that I > have > > to help him sign in to his email (every time) or that he has trouble > > unlocking his car door to get out? Who does it harm when he turns the > phone > > backwards or orders me a cup of coffee when I don't drink coffee? > > > > None of those things really matter. When he can no longer tie his shoes, > > we'll buy slip-ons. When he can no longer button his shirts, we'll get > > pullovers. I know that eventually his condition will stop our travels and > > evenings out with friends, but until then, we adapt and enjoy every > moment > > we have. > > > > That's where the attitude thing enters the picture. When the doctor asked > > my husband how he was doing, he said, " I think I'm doing well. " He said > it > > with a smile and he meant it. > > > > His answer surprised me. Things are definitely worse than they were 6 > > months ago, but my constant insistence that we're doing fine has > evidently > > sunken in. And that's when it hit me. > > > > We really are doing fine. We really are adapting and moving ahead with > > life. In the big picture, we're better off than many of our friends who > > spend their lives fretting over small stuff that really isn't important > at > > all. > > > > Life gave us a lemon. We might not be able to make lemonade, but a glass > > of water with a twist of lemon will still satisfy our thirst. And that's > > the point, isn't it? > > > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx > in > > Dec of 2011 > > > > > > > > -- > Sent from Gmail Mobile > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 Thank you, Kate. You understand exactly what I was trying to say. This disease is difficult on everyone but in different ways. It's never easy to watch someone you love fade away little by little. For me, anyway, it was easier watching my father go through this because he was in his 70's when it got bad and he'd had a very full and wonderful life. We know that we're probably going to bury our parent's someday and maybe even a spouse, but experience has taught us that these events occur when you're older. I feel very young and everyday I fight not to be bitter over the hand we were dealt.  My husband was a physicist--brilliant, hard working, a natural leader--he is well known and well respected in our area. One of the toughest things for me to cope with is knowing news of his illness is spreading through our community. I hate pity.   ________________________________ To: LBDcaregivers Sent: Thursday, June 14, 2012 10:11 AM Subject: Re: An epiphany Wow, . You're experiencing all aspects of all of this. I think you are absolutely right about parent caregiving vs. spouse caregiving. And then there is parent caregiving in your own home, which is what I did until we moved Mom into a dementia unit a year and a half ago (she passed in February). That's somewhere between the two. You have the 24/7 care to deal with - you can't leave and go to another home. But it is also your parent and if they have had a full life, you can reconcile to the loss - not easily, but the whole thing, for me, was not unexpected and I could deal with it. I've never married, but just reading what others are going through with spouses, regardless of age, makes it clear to me that it is indeed more devastating when it is a spouse. You are right. You lose your own life, or the life you expected to have. In my case, I did the same to some extent with Mom living with me. But I also expected it, since both of her parents had some form of dementia. I also think it must be even harder when you and your spouse are younger than you would expect someone with dementia to be. You see your dreams for the future fall apart, or at least alter. If you were looking forward to retirement, you may have to now retire earlier and everything you were looking forward to doing as a couple changes drastically. My heart goes out to everyone caregiving for a spouse. When you were young you probably didn't picture this as " in sickness and in health. "  Bless you for staying and for caring. I hope your families see your need are are there to help. Kate > ** > > > I'm very aware of the prognosis. We are in the process of selling our home > and moving into a retirement community that has a wonderful assited care > componant. I think the situation is different when dealing with a parent as > opposed to a spouse. > > My father died in October with Parkinson's. He had dementia toward the > end. He was wheelchair bound the last 3 years of his life and I helped > with caregiving duties. He was 24 years older than me and my view on his > situation was very different than the one I have with my husband. My > husband's illness directly affects my life. Whenever I left my parent's > home, I was able to return to mine and even though my husband was dx almost > 4 years ago, it was still a releif to get away from the constant care > situation my mother was living with 24/7. Mom got no relief. > > My epiphany was largely an adjustment in my view on this illness. It's > tough to not feel angry with selling my beautiful 2 story n home > and moving into a 3 room apartment when I am only 54. There are times when > I cried myself to sleep, not only for my husband but for me. I felt as > though I was not only losing my husband, but my home and a big chunk of my > life. It's not fair, but it is what it is. > > I guess the purpose of my post was to remind myself that life really isn't > horrible. It's different, but no one is beating us, we aren't living on the > street. We have plenty to eat and still have the ability to enjoy life. > When the day comes (and I know it will) that he is bed-ridden and unable to > enjoy much of anything, he'll be receiving the best care available just > down the hall from my apartment. I have to remind myself to prepare for the > future, live for the moment and don't sweat the small stuff. Just a few > moments ago, he couldn't figure out how to get his cell phone out of the > pocket of his windsuit. (He'd zipped it in and forgotten).There was a time > when that sort of thing would have upset me. But, in the big scheme of > things, that's small stuff. > > > > > > ________________________________ > > To: " LBDcaregivers " <LBDcaregivers > > Sent: Wednesday, June 13, 2012 9:27 PM > Subject: Re: An epiphany > > Hi , > > It's wonderful to read your very good attitude. You are lucky that your > husband is still able to communicate with you and you can manage to have a > good life together. > I am lucky to have had some good times with my mom in the first stages. But > our family thankfully didn't lose sight of the prognosis for the disease > and we tried out best to plan for the future ! I'm glad we did ! > You sound like you deeply love your husband - he is very lucky !! > > Judy > > > > > ** > > > > > > We just returned from the Cleveland Clinic. My husband's meds weren't > > changed, which is a good thing. Anytime they don't need to increase > > anything, I always figure that's good. While making the 5 hour drive > home, > > I had an epiphany of sorts: Managing a progressive illness is really > about > > medication, adaptation and attitude. > > > > The medicines they have will not cure the disease. The best we can hope > > for is slowing it or making it easier to deal with. The disease will > march > > ahead, claiming brain cells as little battles of victory as it proceeds > > with its destructive path. Not too unlike Sherman's march to the sea > during > > the civil war. > > > > That's where the adaptive part comes into the picture. Luckily, a disease > > like this one doesn't happen overnight. It eats away in little increments > > allowing time for the patient and family to adapt. I often have to remind > > my husband (and myself) that the disease hasn't stopped us from doing > > anything we love to do. We liked to travel—still can. Only now we no > longer > > use our large 5th wheel camper. We bought a minivan and stay in hotels. > > When his driving became scary, I took over that chore, BUT we still > travel. > > We can still eat out and fish and play with grandchildren. > > > > And really, does it matter when he puts salad dressing on his spaghetti > or > > answers the remote control instead of the phone? Does it matter that I > have > > to help him sign in to his email (every time) or that he has trouble > > unlocking his car door to get out? Who does it harm when he turns the > phone > > backwards or orders me a cup of coffee when I don't drink coffee? > > > > None of those things really matter. When he can no longer tie his shoes, > > we'll buy slip-ons. When he can no longer button his shirts, we'll get > > pullovers. I know that eventually his condition will stop our travels and > > evenings out with friends, but until then, we adapt and enjoy every > moment > > we have. > > > > That's where the attitude thing enters the picture. When the doctor asked > > my husband how he was doing, he said, " I think I'm doing well. " He said > it > > with a smile and he meant it. > > > > His answer surprised me. Things are definitely worse than they were 6 > > months ago, but my constant insistence that we're doing fine has > evidently > > sunken in. And that's when it hit me. > > > > We really are doing fine. We really are adapting and moving ahead with > > life. In the big picture, we're better off than many of our friends who > > spend their lives fretting over small stuff that really isn't important > at > > all. > > > > Life gave us a lemon. We might not be able to make lemonade, but a glass > > of water with a twist of lemon will still satisfy our thirst. And that's > > the point, isn't it? > > > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx > in > > Dec of 2011 > > > > > > > > -- > Sent from Gmail Mobile > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 Thanks again -- I'm going to PRINT your epiphany for my support group meeting tonight! PS when you do the LBD Stories posting... be sure to add a photo (even if you're just using a generic image) b/c the one thing wrong w/ that site is that it picks up other images that people post if you don't post an image yourself with your text -- something flukey thing they can't seem to figure out... My story is on there -- it's the story with the picture of my mom's dog... the Capgras dog... > > > > We just returned from the Cleveland Clinic. My husband's meds weren't changed, which is a good thing. Anytime they don't need to increase anything, I always figure that's good. While making the 5 hour drive home, I had an epiphany of sorts: Managing a progressive illness is really about medication, adaptation and attitude. > > > > The medicines they have will not cure the disease. The best we can hope for is slowing it or making it easier to deal with. The disease will march ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path. Not too unlike Sherman's march to the sea during the civil war. > > > > That's where the adaptive part comes into the picture. Luckily, a disease like this one doesn't happen overnight. It eats away in little increments allowing time for the patient and family to adapt. I often have to remind my husband (and myself) that the disease hasn't stopped us from doing anything we love to do. We liked to travel†" still can. Only now we no longer use our large 5th wheel camper. We bought a minivan and stay in hotels. When his driving became scary, I took over that chore, BUT we still travel. We can still eat out and fish and play with grandchildren. > > > > And really, does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee? > > > > None of those things really matter. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I know that eventually his condition will stop our travels and evenings out with friends, but until then, we adapt and enjoy every moment we have. > > > > That's where the attitude thing enters the picture. When the doctor asked my husband how he was doing, he said, " I think I'm doing well. " He said it with a smile and he meant it. > > > > His answer surprised me. Things are definitely worse than they were 6 months ago, but my constant insistence that we're doing fine has evidently sunken in. And that's when it hit me. > > > > We really are doing fine. We really are adapting and moving ahead with life. In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. > > > > Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it? > > > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx in Dec of 2011 > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 Would getting ahead of the rumor mill be something that would work for you - like sending around a brief note to the neighbors, family, etc. saying something like " This is our situation. You can find information about this condition at www.lbda.org. Please don't treat me or my husband any differently. LBD doesn't mean that my husband doesn't understand what you are saying - he understands perfectly. " This is awkward phrasing, but I'm sure you can word it better. One thing that worked well for me when I took Mom out shopping, to restaurants or get-togethers was to have some little business cards that I could give to someone to either prevent offensive behavior or stop it. Mom would get so upset when people talked to me instead of her - like people do with small children. The card said " My mother has Lewy Body Dementia. But she understands you completely. Please speak directly to her. " In that way, I could tell people how to act with her without publicly calling attention to her. Again, the wording needs to fit your husband, but I did find this helpful. I found that people are generally uncomfortable around any kind of disability and don't know how to behave. Telling them ahead of time how to best interact with you and your husband makes everyone more comfortable. On the other hand, pity can be quite useful. I remember that when my father passed in the early '70s, our male neighbors all came together to do the things Dad would have done if he were there. My younger sisters never had to shovel snow from the driveway. Pity that accompanies help isn't so terrible and eventually it turns into simple caring rather than the stereotypical version of pity. Kate > ** > > > Thank you, Kate. You understand exactly what I was trying to say. This > disease is difficult on everyone but in different ways. It's never easy to > watch someone you love fade away little by little. For me, anyway, it was > easier watching my father go through this because he was in his 70's when > it got bad and he'd had a very full and wonderful life. We know that we're > probably going to bury our parent's someday and maybe even a spouse, but > experience has taught us that these events occur when you're older. I feel > very young and everyday I fight not to be bitter over the hand we were > dealt. > > My husband was a physicist--brilliant, hard working, a natural leader--he > is well known and well respected in our area. One of the toughest things > for me to cope with is knowing news of his illness is spreading through our > community. I hate pity. > > > > > ________________________________ > > To: LBDcaregivers > Sent: Thursday, June 14, 2012 10:11 AM > > Subject: Re: An epiphany > > Wow, . You're experiencing all aspects of all of this. I think you > are absolutely right about parent caregiving vs. spouse caregiving. And > then there is parent caregiving in your own home, which is what I did until > we moved Mom into a dementia unit a year and a half ago (she passed in > February). That's somewhere between the two. You have the 24/7 care to > deal with - you can't leave and go to another home. But it is also your > parent and if they have had a full life, you can reconcile to the loss - > not easily, but the whole thing, for me, was not unexpected and I could > deal with it. > > I've never married, but just reading what others are going through with > spouses, regardless of age, makes it clear to me that it is indeed more > devastating when it is a spouse. You are right. You lose your own life, > or the life you expected to have. In my case, I did the same to some > extent with Mom living with me. But I also expected it, since both of her > parents had some form of dementia. I also think it must be even harder > when you and your spouse are younger than you would expect someone with > dementia to be. You see your dreams for the future fall apart, or at least > alter. If you were looking forward to retirement, you may have to now > retire earlier and everything you were looking forward to doing as a couple > changes drastically. > > My heart goes out to everyone caregiving for a spouse. When you were young > you probably didn't picture this as " in sickness and in health. " Bless you > for staying and for caring. I hope your families see your need are are > there to help. > > Kate > > > > > ** > > > > > > > I'm very aware of the prognosis. We are in the process of selling our > home > > and moving into a retirement community that has a wonderful assited care > > componant. I think the situation is different when dealing with a parent > as > > opposed to a spouse. > > > > My father died in October with Parkinson's. He had dementia toward the > > end. He was wheelchair bound the last 3 years of his life and I helped > > with caregiving duties. He was 24 years older than me and my view on his > > situation was very different than the one I have with my husband. My > > husband's illness directly affects my life. Whenever I left my parent's > > home, I was able to return to mine and even though my husband was dx > almost > > 4 years ago, it was still a releif to get away from the constant care > > situation my mother was living with 24/7. Mom got no relief. > > > > My epiphany was largely an adjustment in my view on this illness. It's > > tough to not feel angry with selling my beautiful 2 story n home > > and moving into a 3 room apartment when I am only 54. There are times > when > > I cried myself to sleep, not only for my husband but for me. I felt as > > though I was not only losing my husband, but my home and a big chunk of > my > > life. It's not fair, but it is what it is. > > > > I guess the purpose of my post was to remind myself that life really > isn't > > horrible. It's different, but no one is beating us, we aren't living on > the > > street. We have plenty to eat and still have the ability to enjoy life. > > When the day comes (and I know it will) that he is bed-ridden and unable > to > > enjoy much of anything, he'll be receiving the best care available just > > down the hall from my apartment. I have to remind myself to prepare for > the > > future, live for the moment and don't sweat the small stuff. Just a few > > moments ago, he couldn't figure out how to get his cell phone out of the > > pocket of his windsuit. (He'd zipped it in and forgotten).There was a > time > > when that sort of thing would have upset me. But, in the big scheme of > > things, that's small stuff. > > > > > > > > > > > > ________________________________ > > > > To: " LBDcaregivers " <LBDcaregivers > > > Sent: Wednesday, June 13, 2012 9:27 PM > > Subject: Re: An epiphany > > > > Hi , > > > > It's wonderful to read your very good attitude. You are lucky that your > > husband is still able to communicate with you and you can manage to have > a > > good life together. > > I am lucky to have had some good times with my mom in the first stages. > But > > our family thankfully didn't lose sight of the prognosis for the disease > > and we tried out best to plan for the future ! I'm glad we did ! > > You sound like you deeply love your husband - he is very lucky !! > > > > Judy > > > > > > > > > ** > > > > > > > > > We just returned from the Cleveland Clinic. My husband's meds weren't > > > changed, which is a good thing. Anytime they don't need to increase > > > anything, I always figure that's good. While making the 5 hour drive > > home, > > > I had an epiphany of sorts: Managing a progressive illness is really > > about > > > medication, adaptation and attitude. > > > > > > The medicines they have will not cure the disease. The best we can hope > > > for is slowing it or making it easier to deal with. The disease will > > march > > > ahead, claiming brain cells as little battles of victory as it proceeds > > > with its destructive path. Not too unlike Sherman's march to the sea > > during > > > the civil war. > > > > > > That's where the adaptive part comes into the picture. Luckily, a > disease > > > like this one doesn't happen overnight. It eats away in little > increments > > > allowing time for the patient and family to adapt. I often have to > remind > > > my husband (and myself) that the disease hasn't stopped us from doing > > > anything we love to do. We liked to travel—still can. Only now we no > > longer > > > use our large 5th wheel camper. We bought a minivan and stay in hotels. > > > When his driving became scary, I took over that chore, BUT we still > > travel. > > > We can still eat out and fish and play with grandchildren. > > > > > > And really, does it matter when he puts salad dressing on his spaghetti > > or > > > answers the remote control instead of the phone? Does it matter that I > > have > > > to help him sign in to his email (every time) or that he has trouble > > > unlocking his car door to get out? Who does it harm when he turns the > > phone > > > backwards or orders me a cup of coffee when I don't drink coffee? > > > > > > None of those things really matter. When he can no longer tie his > shoes, > > > we'll buy slip-ons. When he can no longer button his shirts, we'll get > > > pullovers. I know that eventually his condition will stop our travels > and > > > evenings out with friends, but until then, we adapt and enjoy every > > moment > > > we have. > > > > > > That's where the attitude thing enters the picture. When the doctor > asked > > > my husband how he was doing, he said, " I think I'm doing well. " He said > > it > > > with a smile and he meant it. > > > > > > His answer surprised me. Things are definitely worse than they were 6 > > > months ago, but my constant insistence that we're doing fine has > > evidently > > > sunken in. And that's when it hit me. > > > > > > We really are doing fine. We really are adapting and moving ahead with > > > life. In the big picture, we're better off than many of our friends who > > > spend their lives fretting over small stuff that really isn't important > > at > > > all. > > > > > > Life gave us a lemon. We might not be able to make lemonade, but a > glass > > > of water with a twist of lemon will still satisfy our thirst. And > that's > > > the point, isn't it? > > > > > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx > > in > > > Dec of 2011 > > > > > > > > > > > > > -- > > Sent from Gmail Mobile > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 We actually haven't told out that he has dementia yet. The news of his Parkinson's diagnosis has been bad enough. Our close friends know, but we decided to keep the other part under wraps for now. Many of the people who know him well have already figured out that " something " is wrong. It'll slip out eventually.   ________________________________ To: LBDcaregivers Sent: Thursday, June 14, 2012 3:56 PM Subject: Re: An epiphany Would getting ahead of the rumor mill be something that would work for you - like sending around a brief note to the neighbors, family, etc. saying something like " This is our situation. You can find information about this condition at www.lbda.org. Please don't treat me or my husband any differently. LBD doesn't mean that my husband doesn't understand what you are saying - he understands perfectly. "  This is awkward phrasing, but I'm sure you can word it better. One thing that worked well for me when I took Mom out shopping, to restaurants or get-togethers was to have some little business cards that I could give to someone to either prevent offensive behavior or stop it. Mom would get so upset when people talked to me instead of her - like people do with small children. The card said " My mother has Lewy Body Dementia. But she understands you completely. Please speak directly to her. "  In that way, I could tell people how to act with her without publicly calling attention to her. Again, the wording needs to fit your husband, but I did find this helpful. I found that people are generally uncomfortable around any kind of disability and don't know how to behave. Telling them ahead of time how to best interact with you and your husband makes everyone more comfortable. On the other hand, pity can be quite useful. I remember that when my father passed in the early '70s, our male neighbors all came together to do the things Dad would have done if he were there. My younger sisters never had to shovel snow from the driveway. Pity that accompanies help isn't so terrible and eventually it turns into simple caring rather than the stereotypical version of pity. Kate > ** > > > Thank you, Kate. You understand exactly what I was trying to say. This > disease is difficult on everyone but in different ways. It's never easy to > watch someone you love fade away little by little. For me, anyway, it was > easier watching my father go through this because he was in his 70's when > it got bad and he'd had a very full and wonderful life. We know that we're > probably going to bury our parent's someday and maybe even a spouse, but > experience has taught us that these events occur when you're older. I feel > very young and everyday I fight not to be bitter over the hand we were > dealt. > > My husband was a physicist--brilliant, hard working, a natural leader--he > is well known and well respected in our area. One of the toughest things > for me to cope with is knowing news of his illness is spreading through our > community. I hate pity. > > > > > ________________________________ > > To: LBDcaregivers > Sent: Thursday, June 14, 2012 10:11 AM > > Subject: Re: An epiphany > > Wow, . You're experiencing all aspects of all of this. I think you > are absolutely right about parent caregiving vs. spouse caregiving. And > then there is parent caregiving in your own home, which is what I did until > we moved Mom into a dementia unit a year and a half ago (she passed in > February). That's somewhere between the two. You have the 24/7 care to > deal with - you can't leave and go to another home. But it is also your > parent and if they have had a full life, you can reconcile to the loss - > not easily, but the whole thing, for me, was not unexpected and I could > deal with it. > > I've never married, but just reading what others are going through with > spouses, regardless of age, makes it clear to me that it is indeed more > devastating when it is a spouse. You are right. You lose your own life, > or the life you expected to have. In my case, I did the same to some > extent with Mom living with me. But I also expected it, since both of her > parents had some form of dementia. I also think it must be even harder > when you and your spouse are younger than you would expect someone with > dementia to be. You see your dreams for the future fall apart, or at least > alter. If you were looking forward to retirement, you may have to now > retire earlier and everything you were looking forward to doing as a couple > changes drastically. > > My heart goes out to everyone caregiving for a spouse. When you were young > you probably didn't picture this as " in sickness and in health. "  Bless you > for staying and for caring. I hope your families see your need are are > there to help. > > Kate > > > > > ** > > > > > > > I'm very aware of the prognosis. We are in the process of selling our > home > > and moving into a retirement community that has a wonderful assited care > > componant. I think the situation is different when dealing with a parent > as > > opposed to a spouse. > > > > My father died in October with Parkinson's. He had dementia toward the > > end. He was wheelchair bound the last 3 years of his life and I helped > > with caregiving duties. He was 24 years older than me and my view on his > > situation was very different than the one I have with my husband. My > > husband's illness directly affects my life. Whenever I left my parent's > > home, I was able to return to mine and even though my husband was dx > almost > > 4 years ago, it was still a releif to get away from the constant care > > situation my mother was living with 24/7. Mom got no relief. > > > > My epiphany was largely an adjustment in my view on this illness. It's > > tough to not feel angry with selling my beautiful 2 story n home > > and moving into a 3 room apartment when I am only 54. There are times > when > > I cried myself to sleep, not only for my husband but for me. I felt as > > though I was not only losing my husband, but my home and a big chunk of > my > > life. It's not fair, but it is what it is. > > > > I guess the purpose of my post was to remind myself that life really > isn't > > horrible. It's different, but no one is beating us, we aren't living on > the > > street. We have plenty to eat and still have the ability to enjoy life. > > When the day comes (and I know it will) that he is bed-ridden and unable > to > > enjoy much of anything, he'll be receiving the best care available just > > down the hall from my apartment. I have to remind myself to prepare for > the > > future, live for the moment and don't sweat the small stuff. Just a few > > moments ago, he couldn't figure out how to get his cell phone out of the > > pocket of his windsuit. (He'd zipped it in and forgotten).There was a > time > > when that sort of thing would have upset me. But, in the big scheme of > > things, that's small stuff. > > > > > > > > > > > > ________________________________ > > > > To: " LBDcaregivers " <LBDcaregivers > > > Sent: Wednesday, June 13, 2012 9:27 PM > > Subject: Re: An epiphany > > > > Hi , > > > > It's wonderful to read your very good attitude. You are lucky that your > > husband is still able to communicate with you and you can manage to have > a > > good life together. > > I am lucky to have had some good times with my mom in the first stages. > But > > our family thankfully didn't lose sight of the prognosis for the disease > > and we tried out best to plan for the future ! I'm glad we did ! > > You sound like you deeply love your husband - he is very lucky !! > > > > Judy > > > > > > > > > ** > > > > > > > > > We just returned from the Cleveland Clinic. My husband's meds weren't > > > changed, which is a good thing. Anytime they don't need to increase > > > anything, I always figure that's good. While making the 5 hour drive > > home, > > > I had an epiphany of sorts: Managing a progressive illness is really > > about > > > medication, adaptation and attitude. > > > > > > The medicines they have will not cure the disease. The best we can hope > > > for is slowing it or making it easier to deal with. The disease will > > march > > > ahead, claiming brain cells as little battles of victory as it proceeds > > > with its destructive path. Not too unlike Sherman's march to the sea > > during > > > the civil war. > > > > > > That's where the adaptive part comes into the picture. Luckily, a > disease > > > like this one doesn't happen overnight. It eats away in little > increments > > > allowing time for the patient and family to adapt. I often have to > remind > > > my husband (and myself) that the disease hasn't stopped us from doing > > > anything we love to do. We liked to travel—still can. Only now we no > > longer > > > use our large 5th wheel camper. We bought a minivan and stay in hotels. > > > When his driving became scary, I took over that chore, BUT we still > > travel. > > > We can still eat out and fish and play with grandchildren. > > > > > > And really, does it matter when he puts salad dressing on his spaghetti > > or > > > answers the remote control instead of the phone? Does it matter that I > > have > > > to help him sign in to his email (every time) or that he has trouble > > > unlocking his car door to get out? Who does it harm when he turns the > > phone > > > backwards or orders me a cup of coffee when I don't drink coffee? > > > > > > None of those things really matter. When he can no longer tie his > shoes, > > > we'll buy slip-ons. When he can no longer button his shirts, we'll get > > > pullovers. I know that eventually his condition will stop our travels > and > > > evenings out with friends, but until then, we adapt and enjoy every > > moment > > > we have. > > > > > > That's where the attitude thing enters the picture. When the doctor > asked > > > my husband how he was doing, he said, " I think I'm doing well. " He said > > it > > > with a smile and he meant it. > > > > > > His answer surprised me. Things are definitely worse than they were 6 > > > months ago, but my constant insistence that we're doing fine has > > evidently > > > sunken in. And that's when it hit me. > > > > > > We really are doing fine. We really are adapting and moving ahead with > > > life. In the big picture, we're better off than many of our friends who > > > spend their lives fretting over small stuff that really isn't important > > at > > > all. > > > > > > Life gave us a lemon. We might not be able to make lemonade, but a > glass > > > of water with a twist of lemon will still satisfy our thirst. And > that's > > > the point, isn't it? > > > > > > wife of Henry dx with PD in 2009 at the age of 56. LBD added to dx > > in > > > Dec of 2011 > > > > > > > > > > > > > -- > > Sent from Gmail Mobile > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2012 Report Share Posted June 15, 2012 Wow....Thanks so much for sharing these words. I really needed them and they've help make an attitude adjustment. Robin R. > While making the 5 hour drive home, I had an epiphany of sorts: Managing a progressive illness is really about medication, adaptation and attitude. > Quote Link to comment Share on other sites More sharing options...
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