Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Shanon: No, you are not alone. Alzheimer's gets all the press, but LBD comes in second as the leading cause of dementia. We are a mixed bag in this group as far as background, religion (or lack thereof), political, you name it, but the one thing we all have in common in fighting this battle. The worst is the journey into the unknown. You don't know how long your loved one will live or what path they will go down in the course of the disease, but you know it will eventually kill them. That is the one certainty. Please know that this will end someday and you will always have the peace of knowing you did the right thing. YOU did the right thing and shame on the rest of your family. If you feel you must place your Mom in a home, then only you can make that decision. Not everyone can remain in their own home. Don't let guilt be a part of your decision making process. Look at the cold, hard facts of your situation. Vent on this list whenever you feel you need to. We've all been through it, the ups and downs, the anger and frustration. As for my following comments, take what you need or not, as you will: Prayer does help. I prayed for wisdom every day as to how to meet my husband's needs and to keep my cool and remain positive every single day. God answered my prayers and gave me, and my husband, peace on the journey. That doesn't make it easy, but I can't imagine going through it without that peace. As for your family who decided their gay sister wasn't whatever they expected, I have an old childhood ditty: " There is so much bad in the best of us, and so much good in the worst of us, that it doesn't behoove any of us to talk about the rest of us. " In other words, this conservative Christian thinks you are okay and God loves you right where you are today. And, funny thing about that, it is the one they disdained who is doing all the heavy lifting in this situation and " stepping up to the plate. " For that, you have my undying respect and admiration. Cassie To: LBDcaregivers From: sugarbearsf_00@... Date: Sun, 1 Apr 2012 11:33:34 -0700 Subject: MY FIRST POST My name is Shanon and I have lived in SF since 1990. In July 2010 my mom got very sick and ended up in a psych ward in Glendale , CA I flew down there and to my surprise the mom that I had just talked to 2 days before was completely different. She didn't know where she was, what state we were in and thought that she worked at the hospital..I was in shock! in Dec of that your 5 days before Christmas my mom was diagnosed with LBD. I had never heard of it before and didn't know what to expect or do, all I know was I had to be there for her. I went back home put my stuff in storage and came back and was there when she was released from the hospital and have been her sole caregiver 24/7 since July 30th 2010. This has been the hardest thing I have ever done in my life and not in a millions years did I think something like this could happen to my mom. She was a very healthy out going person. A massage therapist as well. It's been almost 2 years that I've been in LA and it's taking it's toll on me and unfortunately if your not rich, you pretty much screwed when it comes to help. I thought that my " so called family " would be there, but they haven't done a thing. My brother and sister who I haven't talked to in 20 years( they dis-owned me because I'm gay) hasn't called her in months and on Xmas didn't call or even send a card... " what kind of person does that? I'm so disappointed in how people acted it still to this day I just don't get it, How do you abandon your own mother? that's sick! I've been looking for a nursing home for my mom because I can't keep this up to much longer and I need to get my life back on track or I'll be in big trouble. Neither one of us has money and I feel terrible having to put her in a home but I have no choice, I'm all she has and if I don't take care of myself I'll end up sick and homeless. I try to stay positive but it's becoming more and more hard to do, that's why I joined this group in hopes that reading other peoples stories well give me strength. I had no idea there was such a group until a few days ago. I now know that I'm not alone. I wish the best to all of you in your journey and prayer for us all. Peaces Shanon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 To Shanon: I also " ditto " Cassie! Vivian > Shanon: > > No, you are not alone. Alzheimer's gets all the press, but LBD comes in > second as the leading cause of dementia. We are a mixed bag in this group > as far as background, religion (or lack thereof), political, you name it, > but the one thing we all have in common in fighting this battle. The worst > is the journey into the unknown. You don't know how long your loved one > will live or what path they will go down in the course of the disease, but > you know it will eventually kill them. That is the one certainty. Please > know that this will end someday and you will always have the peace of > knowing you did the right thing. YOU did the right thing and shame on the > rest of your family. If you feel you must place your Mom in a home, then > only you can make that decision. Not everyone can remain in their own > home. Don't let guilt be a part of your decision making process. Look at > the cold, hard facts of your situation. Vent on this list whenever you > feel you need to. We've all been through it, the ups and downs, the anger > and frustration. > > As for my following comments, take what you need or not, as you will: > Prayer does help. I prayed for wisdom every day as to how to meet my > husband's needs and to keep my cool and remain positive every single day. > God answered my prayers and gave me, and my husband, peace on the journey. > That doesn't make it easy, but I can't imagine going through it without > that peace. As for your family who decided their gay sister wasn't > whatever they expected, I have an old childhood ditty: " There is so much > bad in the best of us, and so much good in the worst of us, that it doesn't > behoove any of us to talk about the rest of us. " In other words, this > conservative Christian thinks you are okay and God loves you right where > you are today. And, funny thing about that, it is the one they disdained > who is doing all the heavy lifting in this situation and " stepping up to > the plate. " For that, you have my undying respect and admiration. > > Cassie > > To: LBDcaregivers > From: sugarbearsf_00@... > Date: Sun, 1 Apr 2012 11:33:34 -0700 > Subject: MY FIRST POST > > > > > > > > > > > > > > > > > > > > > > > > > My name is Shanon and I have lived in SF since 1990. In July 2010 my > mom got very sick and ended up in a psych ward in Glendale , CA I flew down > there and to my surprise the mom that I had just talked to 2 days before > was completely different. She didn't know where she was, what state we were > in and thought that she worked at the hospital..I was in shock! in Dec of > that your 5 days before Christmas my mom was diagnosed with LBD. I had > never heard of it before and didn't know what to expect or do, all I know > was I had to be there for her. I went back home put my stuff in storage and > came back and was there when she was released from the hospital and have > been her sole caregiver 24/7 since July 30th 2010. This has been the > hardest thing I have ever done in my life and not in a millions years did I > think something like this could happen to my mom. She was a very healthy > out going person. A massage therapist as well. It's been almost 2 years that > > I've been in LA and it's taking it's toll on me and unfortunately if your > not rich, you pretty much screwed when it comes to help. > > > > I thought that my " so called family " would be there, but they haven't done > a thing. My brother and sister who I haven't talked to in 20 years( they > dis-owned me because I'm gay) hasn't called her in months and on Xmas > didn't call or even send a card... " what kind of person does that? I'm so > disappointed in how people acted it still to this day I just don't get it, > How do you abandon your own mother? that's sick! I've been looking for a > nursing home for my mom because I can't keep this up to much longer and I > need to get my life back on track or I'll be in big trouble. Neither one of > us has money and I feel terrible having to put her in a home but I have no > choice, I'm all she has and if I don't take care of myself I'll end up sick > and homeless. I try to stay positive but it's becoming more and more hard > to do, that's why I joined this group in hopes that reading other peoples > stories well give me strength. I had no idea there was such a group until > > a few days ago. I now know that I'm not alone. I wish the best to all of > you in your journey and prayer for us all. > > > > Peaces Shanon > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 To Shanon: I also " ditto " Cassie! Vivian > Shanon: > > No, you are not alone. Alzheimer's gets all the press, but LBD comes in > second as the leading cause of dementia. We are a mixed bag in this group > as far as background, religion (or lack thereof), political, you name it, > but the one thing we all have in common in fighting this battle. The worst > is the journey into the unknown. You don't know how long your loved one > will live or what path they will go down in the course of the disease, but > you know it will eventually kill them. That is the one certainty. Please > know that this will end someday and you will always have the peace of > knowing you did the right thing. YOU did the right thing and shame on the > rest of your family. If you feel you must place your Mom in a home, then > only you can make that decision. Not everyone can remain in their own > home. Don't let guilt be a part of your decision making process. Look at > the cold, hard facts of your situation. Vent on this list whenever you > feel you need to. We've all been through it, the ups and downs, the anger > and frustration. > > As for my following comments, take what you need or not, as you will: > Prayer does help. I prayed for wisdom every day as to how to meet my > husband's needs and to keep my cool and remain positive every single day. > God answered my prayers and gave me, and my husband, peace on the journey. > That doesn't make it easy, but I can't imagine going through it without > that peace. As for your family who decided their gay sister wasn't > whatever they expected, I have an old childhood ditty: " There is so much > bad in the best of us, and so much good in the worst of us, that it doesn't > behoove any of us to talk about the rest of us. " In other words, this > conservative Christian thinks you are okay and God loves you right where > you are today. And, funny thing about that, it is the one they disdained > who is doing all the heavy lifting in this situation and " stepping up to > the plate. " For that, you have my undying respect and admiration. > > Cassie > > To: LBDcaregivers > From: sugarbearsf_00@... > Date: Sun, 1 Apr 2012 11:33:34 -0700 > Subject: MY FIRST POST > > > > > > > > > > > > > > > > > > > > > > > > > My name is Shanon and I have lived in SF since 1990. In July 2010 my > mom got very sick and ended up in a psych ward in Glendale , CA I flew down > there and to my surprise the mom that I had just talked to 2 days before > was completely different. She didn't know where she was, what state we were > in and thought that she worked at the hospital..I was in shock! in Dec of > that your 5 days before Christmas my mom was diagnosed with LBD. I had > never heard of it before and didn't know what to expect or do, all I know > was I had to be there for her. I went back home put my stuff in storage and > came back and was there when she was released from the hospital and have > been her sole caregiver 24/7 since July 30th 2010. This has been the > hardest thing I have ever done in my life and not in a millions years did I > think something like this could happen to my mom. She was a very healthy > out going person. A massage therapist as well. It's been almost 2 years that > > I've been in LA and it's taking it's toll on me and unfortunately if your > not rich, you pretty much screwed when it comes to help. > > > > I thought that my " so called family " would be there, but they haven't done > a thing. My brother and sister who I haven't talked to in 20 years( they > dis-owned me because I'm gay) hasn't called her in months and on Xmas > didn't call or even send a card... " what kind of person does that? I'm so > disappointed in how people acted it still to this day I just don't get it, > How do you abandon your own mother? that's sick! I've been looking for a > nursing home for my mom because I can't keep this up to much longer and I > need to get my life back on track or I'll be in big trouble. Neither one of > us has money and I feel terrible having to put her in a home but I have no > choice, I'm all she has and if I don't take care of myself I'll end up sick > and homeless. I try to stay positive but it's becoming more and more hard > to do, that's why I joined this group in hopes that reading other peoples > stories well give me strength. I had no idea there was such a group until > > a few days ago. I now know that I'm not alone. I wish the best to all of > you in your journey and prayer for us all. > > > > Peaces Shanon > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2012 Report Share Posted April 2, 2012 Shanon: You would be surprised at the family members who do not step up and help. I was very lucky because my children and sisters stepped up and helped me every step of the way. You need to protect yourself and your mother. The other folks from California can probably tell you who to go to for help. We have " Office of the Aging " here in NY. Medicare cannot pay for long term nursing home but Medicaid will. She has to qualify. There should be some kind of Public Health Agency to help. You could talk to the " Social Worker " at the hospital you use. Financially, there are lots of things you need to attend to. Hopefully it is not too late to have her sign papers. It is also amazing at how relatives show up to collect " their " belongings when Mom has to break up housekeeping or when she has to be placed in a home. They may have lots of advice then. Good luck and God Bless. Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14, 2009. I am handling it OK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2012 Report Share Posted April 2, 2012 Shanon: You would be surprised at the family members who do not step up and help. I was very lucky because my children and sisters stepped up and helped me every step of the way. You need to protect yourself and your mother. The other folks from California can probably tell you who to go to for help. We have " Office of the Aging " here in NY. Medicare cannot pay for long term nursing home but Medicaid will. She has to qualify. There should be some kind of Public Health Agency to help. You could talk to the " Social Worker " at the hospital you use. Financially, there are lots of things you need to attend to. Hopefully it is not too late to have her sign papers. It is also amazing at how relatives show up to collect " their " belongings when Mom has to break up housekeeping or when she has to be placed in a home. They may have lots of advice then. Good luck and God Bless. Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14, 2009. I am handling it OK. Quote Link to comment Share on other sites More sharing options...
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