Monday, April 20, 2015
I HATE FTD!!!
This disease (FTD) is so strange . . . I never know what to expect. My husband has stopped with the outbursts, I am not sure if it is just part of the process or if I am just handling things better. Now he seems to have withdrawn even more and is sleeping all the time. Of course we still deal with him getting up all through the night. But this morning when I left at 7:45 he was sleeping on the couch with the TV volume very low and when I got home at 12:15 he was again on the couch sleeping but the TV was blaring loud. Over the weekend he was slurring his words at times almost like one would do if drinking (he doesn't drink). I think this disease is progressing really fast. I feel so scared. . . I wish I knew where he was in the progression. We meet again with the Neurologist on May 4th to go over his latest PET SCAN. Maybe we can get some answers then. It is such a roller coaster ride and today I am feeling down . . . .
Saturday, April 18, 2015
Compassionate Allowance Inititive
Great news!!! New law passed in 2015.
Please read and see the link at the bottom of my post to get more information.
PS.... Remember we are better together!
Compassionate Allowance Initiative:
The Social Security Administration (SSA) has added early onset/younger-onset Alzheimer's to the list of conditions under its Compassionate Allowance Initiative, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The Alzheimer's Association, a longtime advocate for those with early onset Alzheimer's, has played an integral role in this movement to reduce the length of disability decision process. Sign up for our e-newsletter and learn more about the actions we take on behalf of individuals and their families living with Alzheimer’s.
What is the Compassionate Allowance Initiative?
Under this initiative, the Social Security Administration (SSA) finds individuals with certain diseases/conditions eligible for Social Security disability (SSDI) and Supplemental Security Income (SSI) benefits by the nature of the disease. While applicants still have to meet other SSDI criteria and/or SSI criteria, when it comes to the disability criterion, they are considered eligible by virtue of the disease and fast-tracked for a favorable decision about their eligibility for SSDI and SSI benefits.
What is Social Security Disability Insurance (SSDI)?
Social Security disability benefits (SSDI) are paid to individuals who have worked for enough years and have a condition that is so severe that they are not able to work any longer. Administered by the SSA, SSDI makes monthly payments to eligible disabled individuals and is a significant benefit for individuals with early-onset (younger-onset) Alzheimer's disease. In addition to a monthly payment, it serves as entry to Medicare benefits for those under the age of 65. Family members (e.g., spouses and minor children) may also be eligible for benefits based on the applicant's work record.
What is Supplemental Security Income (SSI)?
Supplemental Security Income benefits (SSI) are paid each month to individuals who are aged, blind or disabled and have limited income and resources (assets). The "disability" criteria for SSI are the same as for SSDI benefits. Unlike SSDI, eligibility for SSI is not based on prior work experience. In addition, in most states, individuals who receive SSI are also automatically eligible for Medicaid (medical assistance) benefits.
Why is this important to individuals with early-onset Alzheimer's disease and related dementias?
Social Security disability benefits are very important to those with early-onset (younger-onset) Alzheimer's and related dementias because these individuals are often initially denied benefits – but usually win on appeal. Those affected by early-onset Alzheimer's are often simultaneously faced with the enormous challenges that the disease presents, while also undergoing a long disability decision process that is financially and emotionally draining. By adding Alzheimer's disease to the list of “Compassionate Allowance” conditions, it will simplify and streamline the SSDI/SSI application process and should result in receiving SSDI/SSI benefits in an expedited manner.
http://www.alz.org/living_with_alzheimers_social_security_disability.asp#co mpassionate
Please read and see the link at the bottom of my post to get more information.
PS.... Remember we are better together!
Compassionate Allowance Initiative:
The Social Security Administration (SSA) has added early onset/younger-onset Alzheimer's to the list of conditions under its Compassionate Allowance Initiative, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The Alzheimer's Association, a longtime advocate for those with early onset Alzheimer's, has played an integral role in this movement to reduce the length of disability decision process. Sign up for our e-newsletter and learn more about the actions we take on behalf of individuals and their families living with Alzheimer’s.
What is the Compassionate Allowance Initiative?
Under this initiative, the Social Security Administration (SSA) finds individuals with certain diseases/conditions eligible for Social Security disability (SSDI) and Supplemental Security Income (SSI) benefits by the nature of the disease. While applicants still have to meet other SSDI criteria and/or SSI criteria, when it comes to the disability criterion, they are considered eligible by virtue of the disease and fast-tracked for a favorable decision about their eligibility for SSDI and SSI benefits.
What is Social Security Disability Insurance (SSDI)?
Social Security disability benefits (SSDI) are paid to individuals who have worked for enough years and have a condition that is so severe that they are not able to work any longer. Administered by the SSA, SSDI makes monthly payments to eligible disabled individuals and is a significant benefit for individuals with early-onset (younger-onset) Alzheimer's disease. In addition to a monthly payment, it serves as entry to Medicare benefits for those under the age of 65. Family members (e.g., spouses and minor children) may also be eligible for benefits based on the applicant's work record.
What is Supplemental Security Income (SSI)?
Supplemental Security Income benefits (SSI) are paid each month to individuals who are aged, blind or disabled and have limited income and resources (assets). The "disability" criteria for SSI are the same as for SSDI benefits. Unlike SSDI, eligibility for SSI is not based on prior work experience. In addition, in most states, individuals who receive SSI are also automatically eligible for Medicaid (medical assistance) benefits.
Why is this important to individuals with early-onset Alzheimer's disease and related dementias?
Social Security disability benefits are very important to those with early-onset (younger-onset) Alzheimer's and related dementias because these individuals are often initially denied benefits – but usually win on appeal. Those affected by early-onset Alzheimer's are often simultaneously faced with the enormous challenges that the disease presents, while also undergoing a long disability decision process that is financially and emotionally draining. By adding Alzheimer's disease to the list of “Compassionate Allowance” conditions, it will simplify and streamline the SSDI/SSI application process and should result in receiving SSDI/SSI benefits in an expedited manner.
http://www.alz.org/living_with_alzheimers_social_security_disability.asp#co mpassionate
Thursday, April 16, 2015
Counting all my blessings, one by one . . . .
Who knew that this journey (my husband age 61 has FTD) would be so difficult. It was hard enough to find out after a year of erratic crazy behavior and loosing his job that the love of my life of nearly 40 years had a fatal brain disease. Then trying to accept and comprehend the terrible diagnosis knowing there was no happy ending and things would only get worse. At the same time my whole world was being turned upside down I had to deal with no income from him (he was too young for Social Security) deal with the very uneasy application process for Social Security Disability, which still has not been approved (can't they see the diagnosis of Fatal Brain Disease) go to all his medical appointments, take care of the house, the yard, the bills, and go back to work part time. . . . all the time watching him decline to the point that my husband is gone and I am living with a stranger. With an uncertain future, not knowing what to expect, financial uncertainty (our savings is fast running out) and the grieving process, I have barely kept it together. There have been terrible days that I thought I could not bear and my emotions are all over the place. I get mad, mad at him and mad at God. I feel robbed. . . . Then I feel bad for getting mad and the guilt sets in.
After beating myself up and crying a lot, I remember to count my blessings. Yes, he has this awful disease and yes he is dying and yes I am sad and lonely and even scared. . . . but then, I remember that I had 40 years with this amazing man who is the love of my life (after all, we were high school sweethearts). A man who was the most amazing dad to our kids. I have to remind myself that some people never have even a couple of years with someone they love. I also remind myself that sometimes it takes years to get a diagnosis and we figured it out in one year. I remind myself that I have the most amazing family and friends who love and care for me. I know how much I love him and even though there will be horrible days and things will get so much worse . . I know that I will endure to the end. I have to! And even though there will be days that I will still be sad and even mad, today I am feeling blessed. Blessed to know that we will be together again some day and this isn't the end of our amazing love story.
After beating myself up and crying a lot, I remember to count my blessings. Yes, he has this awful disease and yes he is dying and yes I am sad and lonely and even scared. . . . but then, I remember that I had 40 years with this amazing man who is the love of my life (after all, we were high school sweethearts). A man who was the most amazing dad to our kids. I have to remind myself that some people never have even a couple of years with someone they love. I also remind myself that sometimes it takes years to get a diagnosis and we figured it out in one year. I remind myself that I have the most amazing family and friends who love and care for me. I know how much I love him and even though there will be horrible days and things will get so much worse . . I know that I will endure to the end. I have to! And even though there will be days that I will still be sad and even mad, today I am feeling blessed. Blessed to know that we will be together again some day and this isn't the end of our amazing love story.
Monday, April 6, 2015
This was a Sad Easter . . .
Yesterday we had our usual Family Easter celebration except this one was different. It was my husband and I, my dad, Nicole, Eric and the 5 grandchildren and Jonny. It was our first family gathering since Christmas and since Claude had gotten so much worse. Everyone can now see the difference in him, even the older grandkids. Yesterday just didn't seem the same. I can't explain except for me "this dark disease" is always with us. I miss the sparkle in my husbands eyes, his charming smile and funny personality. My son who lives in Southern California had been staying with us for 4 days and was getting a first hand look at how bad things have gotten. My son had been doing a lot of research since my husbands diagnosis of FTD and had gathered information and several videos for us to watch. I think that all day instead of enjoying the day all I could think about was what we had planned for that evening. After everyone left, Nicole, Jonny and I decided to sit down with their father to explain the diagnosis to him. We wanted to see just how much he understood. Nicole started and very gently began by asking him if he knew he was sick and what he had. He always looks at me with this look of "help me" when ever he is questioned by family or doctors. It broke my heart to sit and watch and listen to my children explain to their dad how much we all loved him, what was happening and what to expect. As you can imagine, there were a lot of tears. Then we all watched the documentary my son found "What is Frontoltemporal Degeneration" (https://youtu.be/Ue3y60AsMCE) together as a family. I don't know how much Claude understood as he didn't have any comments or questions for us when it was done. We hugged him and told him how much we loved him and that we would handle all of this together as a family as we always had.
I have the most amazing children and I know how blessed I am. Claude was an amazing and loving father and husband. He coached their sports, attended their dance recitals, Scouts, and did everything a great dad does. Our kids have told us so many times that they had such an amazing childhood and were so grateful to both of us. Family always came first for us. I think that is why I feel so angry and robbed. To have had such an amazing life and for it to all end up like this with all our hopes and dreams lost. My wonderful husband and best friend is gone and now I live with a stranger. I love the occasional glimpses of the old him, but those are appearing less and less.
I wasn't sure if we were doing the right thing yesterday... but I feel some peace that maybe he at least understood how much he is loved. This is such a hard journey and as hard as it is, and will get, and as many times as I will think that I can not go on, I will rely on my amazing kids and friends to help me through. And when that isn't enough I know that my Savior is with me and sometimes I can even feel his arms around me. I just pray that my husband doesn't suffer too much or isn't afraid as I don't think I could handle that. I love him with all of my heart. . . . .
I have the most amazing children and I know how blessed I am. Claude was an amazing and loving father and husband. He coached their sports, attended their dance recitals, Scouts, and did everything a great dad does. Our kids have told us so many times that they had such an amazing childhood and were so grateful to both of us. Family always came first for us. I think that is why I feel so angry and robbed. To have had such an amazing life and for it to all end up like this with all our hopes and dreams lost. My wonderful husband and best friend is gone and now I live with a stranger. I love the occasional glimpses of the old him, but those are appearing less and less.
I wasn't sure if we were doing the right thing yesterday... but I feel some peace that maybe he at least understood how much he is loved. This is such a hard journey and as hard as it is, and will get, and as many times as I will think that I can not go on, I will rely on my amazing kids and friends to help me through. And when that isn't enough I know that my Savior is with me and sometimes I can even feel his arms around me. I just pray that my husband doesn't suffer too much or isn't afraid as I don't think I could handle that. I love him with all of my heart. . . . .
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