A Broken System Will Not a Broken Woman Make

For the first time since I started this endeavor I am writing directly on my blog without taking the time and energy and forethought to edit and proofread and ponder over my words before putting them out for the world to read. I am too tired. Too overwhelmed. And frankly, too frustrated and mad. Mad at our system.

Don’t get me wrong. Our friends, neighbors and even strangers have reached out over the past week to offer guidance and help in many forms. I am grateful beyond imagination. They have saved us and I really, really am humbled. But ultimately, our family is still left hanging on a ledge and hoping a huge gust of wind doesn’t blow through.

Jim is home. I know you have been worried and you have been praying and you have sent me your advice. Thank you. His sisters were able to drive him to Delaware and a very special friend rode with me for the 11 hour round trip to pick him up and bring him home. We didn’t know what would happen and I am pleased to tell you the ride was fine. He is fine.

Well, he is hard to understand. He needs help with showering and shaving and getting dressed. He needs verbal cues with washing his hands after using the restroom. He is confused many times and still insists he had to “beat the shit out of two guys”. But he is calm and his usual passive self. Obviously, I cannot leave him alone. Which is why I had to have a friend come stay with him the short time I needed to leave to go visit my counselor. Who listened and then stared at me, momentarily speechless (I don’t think this is a good sign).

I am going to try to do a quick overview of the past week and why I am mad and frustrated and feeling our system is broken. While Jim sat, many hours away, in a psychiatric unit, I called and begged for a way to get him safely home. At the time I started this process, we weren’t sure him riding in the car would be possible and an airplane ride was definitely out. Insurance would not cover a medical transport. So, he had to stay much longer than he should have. And I am ashamed to say I had very little time or mental capacity to really focus on him, how he was and where he was and think of him emotionally. I was too busy being focused on the paperwork and the problem of figuring out what to do. If he had had a stroke or a heart attack, I would have been able to rush to him, focus on his care, his recovery and not think twice about what to do about care when he was back in Virginia. There is nothing I could ever put in writing that will evoke for you that guilt of knowing I was more worried about other stuff than about him. I didn’t rush to be by his side because I had to think about what to do when he came home. This will haunt me for a very long time.

Once I realized I would have to get him home with no financial help, I had to decide what to do with him when he returned. Would he be ok at home? Would he get violent again? Is this the time to put him in a home, making it an easier transition? There were endless questions constantly running through my mind. All the while, our 11 year old son sat idly by waiting for me to get off the phone or off the computer so we could spend some of the quality time I had promised him weeks ago. Time that unfortunately didn’t really happen. Again, the guilt and the sadness cannot be conveyed.

Knowing Jim is retired Air Force, many have suggested the Veteran’s Administration. Jim unfortunately thought that too. It was always his understanding that if he put his 23 years in, he would be taken care of later. Granted, he always thought it would be when he was much older, but he always told me when he got too old and cranky for me to take care of to just stick him in a VA home. How I wish this was so easy to do. Jim does not qualify at this time (that I can find) for ANY VA help. His disability is not service related. He is not over 65 years old. He did not serve in Vietnam. He is not a Gulf War Veteran. Our family makes over $26,000 a year. I checked, re-checked and then checked again. If anyone knows anything different, please feel free to share the magic pass code. I could really use it about right now.

I also applied for Medicaid. Although I haven’t gotten the official word back yet, our chances of getting approved are pretty slim due to our income. Please don’t think we are living high on the hog. We are a paycheck to paycheck family. We own one car. One 1,600 square foot home. One TV. Yep, I splurge sometimes and get Starbucks and I have an iPhone that I bought for my job at the time almost 5 years ago and we’ve taken some nice vacations over the past couple of years. Trust me….this does not mean we can afford care for Jim. Unless we take EVERY SINGLE PENNY that we have coming in each month (I’m not even sure that will eventually be enough), then we could afford his care. Of course, at that point, there would be nothing for myself or the kids. And by the way, I will also have to spend almost all of the retirement and savings we have. So that whole rule about having 6 months salary in savings in case of an emergency? Gone.  Then we could have the state pay for our healthcare, our home, our food, our heat and even our children’s braces. And, I will not have money saved for my own retirement therefore I will also need assistance when I am older. So, to keep from using the government to help with Jim’s care in one program, our family will be reduced to using multiple government programs to stay alive. Then I see that our government is trying to cut disability payments next year by 20%? Really? And I am supposed to stay calm, cool and collected?

I cannot possibly explain the amount of frustration this causes me. I do not feel we are a family who is trying to take advantage of the system. We are in a unique situation, but because of rules, regulations, guidelines and black and white protocols, we are stuck right in the middle. We don’t make enough to pay for care, yet we make too much to receive aid. The programs currently in place are for retired people who can sell their homes and use up savings and retirement to pay for care, or they will then qualify for government assistance. It is not set up for middle aged families who may need that retirement later and who have young children at home and cannot sell their home to pay for care. As a disclaimer: Medicaid does allow us to keep the home and the car. The previous statement is in reference to who the people had in mind when they wrote all of the guidelines for the program.

Let me give you an example of a conversation I had this week. It will hopefully show you how much I feel like I have been a hamster in a wheel…..

While at the VA hospital, meeting with a Veteran’s Representative, I was asked for a letter from when Jim retired. It was his disability rating letter. I didn’t have it. The very kind gentleman told me I would need a Power of Attorney in order to get a copy. I pulled out my copy and tried to hand it to him. “No, you need a VA Power of Attorney,” he says to me. I look down at my copy and in bold, capital letters at the top of the very first paragraph it says MILITARY POWER OF ATTORNEY. So, I try handing it to him again and tell him it was done on a military installation and is a military POA. “No. It has to be a VA Power of Attorney. That one won’t work.”   Are you kidding me? This, while Jim sat in Connecticut, waiting for me to figure out something to help him. After all the years he served and thought he would be ok and not a burden to his family or anyone else. After I sat and cried for a moment, I asked the same kind man how I could raise my family on the $26,000 a year they expected in order to quality for Aid and Attendance? He very quickly told me that combat war veterans were coming back and living on $8,300 a year.

And what could I say to that?

Now I am just treading. Keeping my head barely above the surface and hoping all of the red tape, regulations and bureaucracy doesn’t pull me under. How am I expected to take care of two children and Jim with no help? If I was independently wealthy, no problem. But I am not. We are a middle class family trying to find a needle in a haystack.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (26)

Sink or Swim Time

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Yep. I am still in a bit of a funk. I am fully aware of my melancholy, yet I just can’t seem to pull myself into a brighter mood. There always seems to be something going wrong or something getting broken, misplaced or needing to be done (house painted, porch replaced, etc.). I swear, sometimes I think there really is a dark cloud that lives over me. I could really use a ray of sunshine. Not just for a moment, but for an extended period.  It is a never ending cycle and I just need a break. A break from decisions, from work, from being a “single” parent, from worrying about Jim and his future. While I say this, a tiny voice is on repeat: BREAK? WHY SHOULD YOU GET A BREAK? YOU HAVENT EVEN GOTTEN TO THE REALLY HARD PART YET!

Yep, I know what is headed our way and I sometimes wonder if that makes everything personified. Even so, I am desperate to raise the children in a positive environment. Yet, I am not sure there is a lot of positive vibes floating around when I am such a grump. I know there are some people who follow our story who have lost loved ones to something other than Alzheimer’s. I think when you lose a loved one, it is a universal understanding and bond that is formed with others that have gone through the same pain. But there is something about Alzheimer’s Disease that seems to be a little crueler. I do not, in any way, mean to disrespect those that have lost someone to cancer or any other sickness. It all hurts. It all makes you lonely and sad and the loss itself is the same. But I think the costs associated with the long term care, the frustrations of “babysitting” your spouse or your parent (or sibling) for such an extended period of time, the pure hopelessness felt every time you visit the doctor and there is no treatment plan therefore no hope, the mourning that is done day in and day out and then the overwhelming lack of time to mourn as you are embedded in the routine of worry, exasperation and financial struggles that can ruin your family forever. I realized just a few days ago that part of my problem was the fact I need time to let go of Jim and to lament the loss of our marriage, our family, our dreams, our relationship and come up with a plan to help the children do the same. But I don’t have time. I am not allowed or able to take the breather that usually comes with the loss of a spouse. Because I haven’t actually lost him. He is right here. Playing tennis. Eating dinner. Walking the dog. But he isn’t. He is so not here. And I am so not able to truly allow myself to let him go. So here I am, treading water, wondering how long I can keep it up.

I need help. Help fighting this war. I need to know that there is something better coming. My husband is dying from a disease that has no cure and no real treatments. It runs in his family. I am asking EVERYONE to help us. What can you do? You can write your Congressperson. Don’t ask them for more money for Alzheimer’s research, DEMAND it. Demand they listen.  Here is a link to a previous post about why you should help us advocate. Please ask them to support the Alzheimer’s Accountability Act. For more information click here. Then follow up with them and let them know you are paying attention!

When I follow the news and listen or read about proposed spending on things that I just don’t feel are as important as finding a cure for a disease that has been around over a hundred years and yet we are no closer to keeping someone afflicted alive longer or providing a way to cure it or prevent it all together, I just want to scream. Not only are we not providing what is needed for the patients, we are doing huge injustices each and every day to caregivers. Caregivers are getting worn out, used up and kicked to the curb over and over again. Each person who is responsible for an Alzheimer’s patient, must not only figure out finances for care and lost wages, actual care to be provided, often times losing their own jobs, and they must try to navigate through mounds of paperwork and technical terminology to make sure every “i” is doted and “t” crossed so they MIGHT get some sort of help. It is a disgrace how much burden is added to people who are struggling to come to terms with the fact that someone they love so dearly is dying.  Then, to add salt to the wound,  they are forced to prove they can’t pay for care or told they did something wrong and must re-submit the same paperwork they have already submitted 2 times or they must spend down the retirement they need to survive themselves in order to get help with care for their loved one. IT IS INSANE HOW THIS SYSTEM IS SO MESSED UP!!! None of this process makes any sense and yet, here we are, The United States, the leader of the free world…..definitely NOT a leader in the fight against Alzheimer’s Disease. Why? Can someone please explain to me why this isn’t more of an urgency and why we are having to fight so hard to be heard? Maybe then I can relax and I can have faith that things will be better for Frances and Brad.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (14)

A Day in the Life

 

Frances and I  April 2002.

Frances and I
April 2002.

“Um…. I…. Um.…Did you….What am I….. Uh… I….uh.”

“Yes, Jim. Go ahead.”

“Uh, the front. Uh…. do you want me to….ummm….the front.”

“The front yard?”

“Yes.”

“What?”

“Uh, the uh part like a fur collar….Uh. Mmmm. By the flag. Like a collar. Uhhh…fur collar around.”
“The boxwood hedge?”

“No.”

“The liriope?”

“No.”

“The part,….uh, the part….fur. Fur collar. Um….Around……Around the uh, around the front tree.”

“The liriope is around the tree. That must be what you are talking about. The stuff that looks like long grass?”

“Yes.”

“That is liriope.”

“Do you want me to trim it?”

“No. You do that in the winter. You did it in Feb.”

“Oh. Ok.”

Another conversation that shows Jims’ decline. Another heartbreak. Another slip into a future that I am not looking forward to and don’t really want to live through.

Another frustrating situation for both of us. He is frustrated trying to explain himself and I am frustrated trying to understand him. The kids are frustrated. We joke that it is a game of charades, but you can only laugh so much at the fact your father cannot explain a simple thought to you.

I am in a constant state of despair. I just don’t have any answers and I don’t have an easy way out. I don’t see anything that will make this plight an easy one. An uneasiness seems to haunt me. Finances. The house. The yard. The kids. My job. Jim. His decline is on a more steady course than in past years. It is noticeable. It is impossible to ignore. There is a feeling that stays with me now; it is unshakable. A feeling of being in trouble. Like when I was a teenager and I knew I had done something wrong and it was only a matter of time before my parents found out and I would soon be in trouble. No matter what I am doing, who I am with or where I am, a sense of imminent doom looms overhead.

Brad and I  April 2008

Brad and I April 2008 Thank you Patti Brown for this perfect photo.

What have I done? What can I do different? How can I get out of this and save us from the terrible future ahead? What am I doing wrong? Should I have gone back to work sooner? Should I have saved every penny we ever made? How am I going to take care of me and the kids? How am I going to take care of Jim and work full time? What kind of person will I be when all of this is over? Will it ever be over? What kind of person am I for thinking this? I am horrible. I should not be thinking about me and my future. I should only be thinking of Jim and the kids. But, what am I going to do about the kids? What if the kids get this one day? Oh God. No. Please. Please don’t let my babies get this. I couldn’t take it. I would rather die than watch them succumb to Alzheimer’s. I might as well quit right now. I have to do something. What can I do?

Talk Karen. That is about all you are good at these days. Talk.  Get everyone you know to write their Congressmen. March up to D.C. again and don’t leave until they have a cure. Move to D.C.  Start a war like they have never seen. Wait. I can’t do that. I have to take care of Jim and work and take the kids to practice. Ok, then get everyone else to do that too. Will they? Will others care that my kids, my life, will possibly be taken from me when they are older? If they were getting this now, when they were young, people would care. But they will still be my little ones even when they are grown. They will be all I have left. Why can’t everyone see that? Why can’t everyone in the world stop and listen and care? Why can’t some really rich billionaire who spends thousands of dollars on a single dinner just give a few million to this? Wouldn’t they do that if it was their own children at risk?

What do I have to do? I can’t let them get this. I can’t not do something. What am I going to do for dinner tonight? I don’t think we have anything in the fridge and I don’t have time to go by the store. I could ask Jim to run to the store. Oh. That’s right. He isn’t driving anymore. I wonder if I took his license too soon. No, I did the right thing. I wonder if the kids have gotten their stuff done.I wonder if Brad read and if Frances cleaned her room.  I should call the house. Oh, I can’t. I have to call back Mr. Jones for work. I am tired. I wish I could just go home and take a nap. I wish we had a screened in porch so I could sit and take a nap in it. Uggh. I still need to sort a load of laundry and pay those bills that came in last week. Wait. Wasn’t it Jen’s birthday? Did I call her? Yes. I think I did. No. I might not have. Did I call back Melissa? Didn’t she call me and leave a message? I think that was a couple of days ago. Oh my God. My memory is getting as bad as Jim’s. What will I do if the kids get this one day and I do too? Who will take care of them if I am sick? What if I get in a wreck? Who will take them if I die now? What if Mom and Dad die right after I die? I need to make another appointment with the attorney and get that settled. Who should I make guardians? What would happen to Jim? Would the kids know I loved them more than anything? I should write them both letters. I don’t think Jim ever wrote those letters to the kids like I asked him to. What if I get cancer?  Who would take care of me and the kids at the same time? Mom and Dad would, but that would be a lot on them. What would I do with Jim? I can’t get sick. What if I do die though?

Who would pick up the fight if I am not here to do this? I wonder if any of my friends would? I wonder if the kids would? I need to do something. Maybe I should go jogging when I get home. I can’t. I have to start dinner and I need to work on those pictures from Alaska and I need to straighten up my desk and I have the book I am trying to read and I would really like to sit on the couch and watch a movie. Yes. A movie and a cold beer would be nice.I haven’t sat and watched TV in a long time. I think it has been a few weeks. What was the last thing I watched? I can’t remember. Maybe I will do that. I deserve it. Wait.  We don’t have any beer. I need to go to the store anyway. I wonder what I can fix for dinner tonight?

Frances and Brad. Vancouver. July 2014.

Frances and Brad. Vancouver. July 2014.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (17)

The Purple Brigade are Coming to Town

 

Younger Onset Alzheimer's, Advocacy, Washington D.C.

Jim and I at the Capitol, April 2013.

When I participated in a roundtable speaking engagement recently, I was privileged to meet some wonderful caregivers. They were from all over the country. They had stories to share, just like we do. They were wonderful and I loved meeting them and listening to their frustrations, their sadness, their daily struggles. We all could commiserate together and naturally form a bond. It seems whenever I meet other caregivers, we almost instantly form a bond. It is just what we do. There is an unspoken respect, love and support that comes along with the participation in the caregiver role.

Jim and I attending the National Alzheimer's Disease Advocacy Forum in Washington D.C., April 2013

Jim and I attending the National Alzheimer’s Disease Advocacy Forum in Washington D.C., April 2013

As we shared a few laughs and heartaches, I spoke about advocacy for Alzheimer’s. I explained that Jim and I have become quite outspoken and travel to Washington D.C. and write letters and ask for help on a regular basis. The table got quiet. Something suddenly dawned on me. So I asked them, “How many of you have asked your representatives to fund more research or have even spoken with them about your story?”  Guess what? Not a single one raised their hands. I was really surprised. These people are passionate about needing help. They were willing to come and participate in the roundtable. They wholeheartedly want to help. Yet, they had never thought to contact the people that can REALLY make an impact: Their representatives. Well, you know me….I made them promise right then and there that when they got back home they would contact their representatives and ask for help.

Jim, April 2013.

Jim, April 2013.

Tomorrow, Jim will celebrate his 52nd birthday. Part of me feels like I should throw together  a huge soiree with our friends and really celebrate how awesome he is. But, it is the same time as our annual purple brigade pilgrimage to Washington D.C. to meet with (hopefully) our representatives and join others from around the country who are just as ardent supporters as we are. We have made friends with some fellow advocates that we see  each year. (this is our 3rd year)

I asked Jim before we decided to go if that was how he wanted to spend his birthday. I explained to him the date coincided with his special day. He didn’t hesitate. He didn’t flinch. He stated right away and with certainty that “yes, I want to go. That is much more important.”

So, off to D.C. we go.

I know many of you that read my words will be with us in spirit. You will be on our minds. You will be cheering for us and encouraging us. Thank you.

I ask EACH of you that read these words to help us. PLEASE. You don’t have to travel to D.C. to have your voice heard. Your representative has a local office. You can visit there. Your representative has a website and has a way to contact them through that site. Your representative has an address and will receive your letter. Your representative has an aide that will be answering the phone in their offices and you can call and leave a message. There are many ways to contact your Congressperson. There are NO excuses why you don’t.

Here is a link to a previous blog post I wrote about this subject. You will see two links ¾ of the way down. Click on these links to find out who your representatives are and how to contact them http://missingjim.com/2013/04/26/375/

Please don’t tell me you are too busy. If you have time to watch a 30 minute TV show, you have time to do this. If you have time to read a book, you have time to do this. If you have time to play Candy Crush or some other video game, you have time to do this. NOTHING is more important. Our voices need to be heard. There are millions of lives that are depending on enough money being thrown into research to either find a cure, a vaccine or a treatment that allows the disease to lie dormant in a person. If you can’t be bothered, then you aren’t allowed to complain when someone you love is afflicted and you are sitting at the doctor’s office waiting for them to tell you what medicine to take that will make them better. Unless something major happens in the research world, that scenario will NEVER happen. You will sit in the doctor’s office, in shock, waiting and hoping and leave with nothing but an appointment for 6 months later.

This is a birthday gift you could give to Jim that will not only keep on giving to our family, but to millions of others as well. Help Jim celebrate by writing or calling your representative right now.

So, while Jim and I can, we will descend on the Capital of the United States, purple banner slung across our shoulders, along with hundreds of others who are able to do the same. We will speak and we will find out soon enough if our voices and our pleas are heard.

Meeting with Senator Warner and his staff. April, 2012.

Meeting with Senator Warner and his staff. April, 2012.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (5)

Funding Anyone?

Alzheimer's funding, alzheimer's disease

Last month I was driving to work in the early hours of the morning and I got angry. I was listening to a story on NPR about how in the 2003 State of the Union address, President George W. Bush committed 15 BILLION dollars to help fight AIDS world wide. I commend him and think that those efforts a decade ago are being felt now in the accomplishments seen in the fight against AIDS. Yes, I understand there are still people dying from AIDS, but the numbers are down. People are able to live productive, relatively healthy lives after a diagnosis. There is now hope, where there once was none. Truth be told, the US has spent more than $50 BILLION worldwide since that speech on the global AIDS fight.

Do you know how much our government has budgeted right now for Alzheimer’s Disease research? $480 MILLION. That is a long way from a billion and certainly an even longer way from $15 BILLION, let alone $50 BILLION.

Just to be clear about how ridiculous the numbers really are: our government spends OVER $140 BILLION a year on Medicare and Medicaid for those with Alzheimer’s Disease. They spend $480 MILLION on research to find a cure so that they won’t have to spend an increasingly astronomical amount on care. Are you getting the picture here?

WHY CAN’T WE COMMIT THE SAME AMOUNT OF MONEY FOR A DISEASE THAT HAS NO CURE, IS GUARANTEED TO BANKRUPT NOT ONLY OUR COUNTRY BUT DOZENS OF OTHER COUNTRIES AND DRAINS FINANCES, EMOTIONS AND FAMILIES FOR YEARS AND DECADES?

It is hard to compare apples to apples. You never want to have your words misunderstood. I am not, in any way saying we shouldn’t support the fight against AIDS or any other disease. If you are someone who is fighting that fight or losing a family member to it, the last thing you want is some blowhard talking about cutting funding and moving it to another worthy cause. I am not asking for any cuts to be made for other disease research.

They are all worthy causes.

alzheimer's disease, funding for research

My mother suffered a heart attack not that long ago. I was scared. I was completely taken by surprise and rushed to be by her side. But after a few days she was home, taking it easy and a year later she is enjoying celebrating 50 years of marriage to my father. I still worry and I still harp on her about taking care of herself, but somehow it is so completely different than watching Jim succumb to the overall evils of Alzheimer’s Disease. She was able to go back to her “normal” life and not lose any mental or physical capacities. There are not financial implications. There are no long term plans needed. She has a warning, she has doctors orders, she has hope.

My father is a prostate and skin cancer survivor many times over. Again, with each diagnosis, surgery and waiting game, I have gone through an array of emotions, which always includes lots of worrying, crying and plain terror. So far, he has remained cancer free, only needing large chunks of skin removed every couple of years. His prostate cancer seems to be in check. Over all, I think that having these scares has made me that much more grateful to still have both of my parents in my life. I am thankful each and every day they are here to help me because they are, at times, my saving grace and my shelter from this storm.

Cancer and heart disease run in my family. Both sides. 3 out of 4 grandparents have succumbed to one form or another of cancer. 3 cousins have been diagnosed, 2 are still with us; Because of advances in treatments which came directly from research. I have lost family members that I loved dearly to cancer. I raised over $4800 while training for and eventually running a half marathon for the Leukemia and Lymphoma Society in San Francisco. I dedicated that run to my cousin Jay, who passed away much too young, at 14, of leukemia.

I have seen the fight and the inability to win. But along the way, I believe the difference is in the ability to have hope. To have the chance to fight. The chance to win. With Alzheimer’s Disease, victims are not given any of those things. You are given a diagnosis and sent home to do research or not. To cry, or not. To tell others, or not. To raise awareness, or not. To see the doctor in 6 months, or not. To make financial plans, or not. To seek spiritual help, or not. There are NO rules, guidelines, or definitive game plans. You are left to your own devices.

I am beyond grateful for the fact that others before me took up other causes that needed research, funding, awareness and cures.  People that lost loved ones. People that were hurt, angry, sad, lost and eventually found by their hard work and dedication to a cause that had taken from them someone that could not be replaced.

Can anyone explain to me why we can’t do the same for Alzheimer’s Disease? Why can’t more people speak up? Why can’t more funds be allocated and disbursed? Is it going to take another Rock Hudson, Elizabeth Taylor and marches in the streets?

The problem arises with the simple fact that Alzheimer’s Disease isn’t contagious (though it can be hereditary).  It affects “old people” (tell that to the thousands of Younger Onset patients). No children are affected (except for the children and grandchildren that are scarred for life by witnessing the Long Goodbye).There doesn’t seem to be a lot of outrage at the lack of answers or cures.

Well, there is outrage with a few of us. I am mad. I am mad that there are people that can speak up and don’t. I am mad that people whisper and try to hide what they are going through. I am mad that frivolous things are funded but more research and programs to help families dealing with this horrible plight are not. I am mad that there are so many of us who have no help or hope or support.

Which would you rather be diagnosed with? Cancer, AIDS, Heart Disease or Alzheimer’s Disease? 3 out of those 4 have treatments and survivors. 1 does not.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (10)

Merry Christmas Story Telling

 

You-Are-Not-Alone-In-This-Motivational-Love-QuotesI want to wish each and every person a very Merry Christmas. When I started this blog back in February, I had no clue of the reach I would have around the world. I have been amazed at the response and I have been humbled by the support and words of encouragement. I am inspired daily to keep going and to do more. Sometimes I am not sure I can. Other times I don’t think there is anything that can stop me. As I sit looking at all I have to do in order to be ready for Christmas morning, I would be remiss if I didn’t write a special post to let all of you know how much your love and kindness have meant to me. I get many notes and messages telling me how grateful many readers are that I share our story. But our story is really the story of  many. In the process, stories are shared with me. I cry. I laugh. I get inspired. I would like to take this special time of the year to share some of the very touching e-mails that have been sent to me. My hope in sharing these heart wrenching tales is to help you not feel alone and to help educate those not familiar with the long goodbye process of Alzheimer’s Disease. I am sorry I am not able to share ALL of the notes I have gotten, but since there are well over 200, I will save some for later and  keep this a reasonable length. I thought Christmas would be a wonderful time to share these stories with EVERYONE. For me, the best Christmas present would be a cure for Alzheimer’s Disease. Since that doesn’t seem likely between now and tomorrow, I will settle for lots of help and support getting a cure to come about in the next year. (I am ambitious) Or at least help spreading the word and contacting those that can make a difference; Your Congressmen and women. Please let them know how important it is to keep funding for Alzheimer’s Disease Research in the budget. Let them know you are watching and passionate about this. There is no other way we are going to see this happen. Please help with my Christmas Wish by contacting them. Please visit this page for links and information on contacting your representative. There are no excuses not to do this.

In the meantime, please read some (I will continue to share over the coming months) enlightening and heartbreaking stories:

You have written about my thoughts, concerns, breakdowns, anger, and hope……lessness. My husband was an airline pilot.  Smart.  Funny. After a year of tests, he was finally diagnosed at 55.  I had two children at home, the youngest was 12.  I know you know my story… you wrote about it. We, too, became involved.  Peter (my husband) was chosen to be a member of the National Alzheimer’s Association Advisory Board.  We gave speeches.  We too, walked on Washington and spoke to our Congressmen.  We were featured in ads for the Alzheimer’s Assoc. and in training videos for caregivers.  For the past 5 years our newspaper has been doing an article on Peter which appears on the front page of the Sunday-after-Thanksgiving edition.  They are following him ‘until the end’.  We were asked to appear on FOX news and with Tom Brokaw, and on and on.  It was exciting and we felt we were helping the cause. 

Yesterday, the day I read a portion of your blog, I put Depends on Peter for the first time.  It was long overdue, but I haven’t wanted to take that step. Two things you wrote on that first post I read, jumped out at me and made me realize that perhaps I am not alone in the thoughts that are constantly doing battle in my head. Shortly before Peter was diagnosed, I found out he had been cheating.  I was in the process of figuring out if i wanted to leave (yes, I did) when he was diagnosed.  “My parents raised me to take the high road, not the easy road.”   I stayed.  Then, when our public appearances waned and his life was not as busy,  I found out his “wandering” had continued.  He asked me for a separation “So I don’t have to lie to them (his girlfriends) anymore. “We could not afford two households, and I knew there was no one else who would care for him when things got bad, so I stayed.  I made his meals and washed his clothes while he went to bars and took trips with his girlfriend of the minute.  Since AD no longer afforded him the ability to cover his tracks, the kids found out and told me I should leave him.  My kids!!  But “my parents raised me to take the high road, not the easy road.” So, I stayed. I didn’t want my kids to end up having to take care of him when all the girlfriends figured out what was going on and left.  Which they did. I once again took off his wet and dirtied clothes and once again scrubbed the floor. Then I went and got the Depends .  “This…this…cardboard” he said as I put them on him.  “It will be ok.  This kind doesn’t get wet” I said.

In September, Peter lost his balance, fell head first into the street and suffered (what I believe) was a concussion.  He was taken to the hospital via ambulance as he had a large gash in his head for which he received stitches.  He has not been the same since.  He was in the hospital for over a week, then rehab as he was no longer able to stand nor walk.  After two weeks of rehab and no improvement, insurance refused to pay any longer and he was to be released.  However, they would not release him to my care as he is considered a “two-person assist”.  I was given three days to find a facility that would accept him.  On Oct. 18, he was admitted into a personal care home.  From the moment of the fall he dramatically changed and has not recovered…at all.   He can no longer stand, walk, see (very little), speak (very little and not intelligible), nor feed himself and is completely incontinent.  He only knows who I am on rare occasions and doesn’t recognize our children at all.  He is not aware of his surroundings. Sometimes, though, as I try and make some conversation which he shows no sign of understanding, he begins to cry.   It has been a very difficult few months.  I wish I could say life has become easier, but it has not.  Under the circumstances, I thought I would have a sense of relief, but I do not.  I just find myself on another path of dealing with this disease, completely as unprepared as I found myself on the past paths. 

          -Thank you J for sharing such a personal and intimate look into your new life.

This time of year is really hard for both Henry and me. I don’t know about you but I feel I am doing more and more and Henry is unable to do less and less.  I can’t believe what a decline I have noticed within the past few weeks.  I don’t know if it is because he feels down at this time of year or that his situation is progressing. I am really scared as even though I know what is happening, I don’t want it to happen.  I try to do all the things we used to do together, having to see if there is some kind of happy response.  We went for our Christmas tree and when he was well this was such a happy time, picking the tree, tying in on the car, getting in the house and then starting to decorate it.  This year it was entirely different.  It was like Henry didn’t care one way or another whether the tree is there or not.  It seems that everything I am trying to reinvent of our past is not working and then I become depressed because I have to stop and say listen what is wrong with you, it is never going to be like that again.  Even though I know this, I always have a glimmer of hope that one day all this will go away and he will be like he was 25 years ago.  I miss those times.

Our tradition was on Christmas Eve we would have all my family get together for a big dinner and celebration with my Mom and Dad in addition to all the children, grandchildren, etc.  and Christmas Day, we would celebrate a traditional Hispanic Christmas with Henry’s entire family.  I am trying to keep my Mom and Dad’s tradition of having the entire family over and I have decided do this the past few years because I feel if one of us don’t try to keep our family together, we will be stranded all over the place and sooner or later everyone will be parted from each other.  This year, I am hosting the Christmas Eve tradition again, but in all honesty Karen, my heart is so heavy that I am just going through the motions.  I am scared how Henry is going to be because one moment he can be fine with people and the next moment, he can either be very withdrawn or to the point of becoming angry and being embarrassing as to what he says.   Even though people know the situation, no one really knows what it is like unless they live it on a daily basis.  The different mood swings, the point of being frightened, the crying as to why or what is happening….Even though people say they understand, they really can’t imagine how difficult it is just to keep a somewhat normal daily life.

Henry spends most of his day watching TV.  He is afraid to go outside without me because he is afraid of getting lost even though I have the Medic Alert for him.  He tells me he is happy being with the dog until I come home from work.  I don’t know if this is such a good idea and have tried even with the Doctor’s help but no accomplishments.

-Thank you Denise for opening up to me and for your very kind words.

My husband was diagnosed in February of this year with Early Onset Alzheimer’s at the age of 56.

He retired as an Alabama State Trooper in July 2010, due to what we were told after a hospital stay was stress and anxiety. He started being treated for stress in 2007. He began misplacing things all of the time. He always thought we were moving his keys, watch, wallet, you name it. He was a bomb technician, firearms instructor, Swat team specialist and also a contract employee for Homeland Defense as an instructor, in EOD and Haz-mat. He was very educated and was a highly respected law enforcement officer for over 33 years. He started having problems with money and numbers in 2010, which increased his stress levels. He was taken to the hospital, for what they thought was a heart attack and after a battery of tests, the doctor said it was stress and he needed to retire. So we did. He worked part time at a friend’s gun shop, only to become agitated on a daily basis. He had problems completing the background paperwork for gun purchases, also with making change, etc. We went to our family doctor several times in 2011 and in 2012 he had a brain scan done and he told us it was stress causing mild cognitive impairment. He scored 23 on the mini mental evaluation in his office. He changed his medication once again and told us to reduce stress as much as possible. There were so many times I just wanted to leave, but I loved him with all my heart and couldn’t do that to our children as well. It scares me the thought ever went through my mind. We have three sons all living at home. Our youngest is 13, our middle son will be 21 in January and just graduated the police academy and our oldest is 22 and is in his 4th year in college.

We went back again in August of 2012, he repeated the mini mental evaluation and he scored 21. Two weeks before our appointment for the neuropsychologist testing, we found out our insurance didn’t cover mental health, so our portion of the bill was $950.00, due at the time of the visit. We didn’t have the money, so I called and asked for a referral to a neurologist and we were able to get an appointment in a little over a week. When they started asking him they day, the month, year, who was governor, what county he was in, the list goes on and he couldn’t answer most of the questions. I was in a state of shock. They did an EEG and it showed slowed brain activity, they started him on Aricept and he referred us to UAB and we were able to see the Director of Neurology. He is the most amazing doctor I’ve ever met. He scored in the low teens in the mental evaluations. He ordered a PET scan, but our insurance wouldn’t cover it, so he had a SPECT scan done instead. The doctor said it was basically an older version of the PET scan. He called me the evening after the scan at home. We had been home about three hours and he told me John had Alzheimer’s. He said he was pretty sure that’s what it was, but wanted to scan to confirm everything. He said he could not drive any longer and told me to apply for social security disability benefits. He is in the moderate stage of Alzheimer’s and he is too far advanced for any of the clinical trials. I cried after speaking with the doctor. How do you tell someone this kind of news? I knew something was very wrong for a long time, but was misdiagnosed for several years. I never in a million years would have dreamed this would happen to us at such a young age. I am 45 and John is 57.  Your blog reminds me of the overwhelming stress, the grieving for what’s been lost and what is ahead in the future. Bringing home the groceries and not getting any help because he doesn’t pay attention that I’m carrying in six bags at once. I don’t have to tell you, because you are living it too.

– Thank you Kimberly. You speak for so many.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (5)

Our BIG Christmas Gift this year.

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Meeting our newest family member, Duke, for the first time. Dec. 2013.

For the first time in my life I own a dog. A beautiful, smart, sweet, 5 month old bundle of joy. Hard to imagine that at 43 I have never had a dog. There are lots of reasons why ,starting from when I first asked for one around the age of 4.

Through the years I have owned cats (many), fish, parakeets, a turtle or two and hamsters (ok, the hamsters were Frances’). After I got my first apartment, within a couple of months I had a kitten. So, I have loved having a pet, just never a dog.

We have lots of friends with dogs. But I don’t coo and cuddle and show much interest in their dogs. It isn’t that I don’t like dogs, I actually do. But none of those dogs are mine. None of those dogs have a history with me. They aren’t there when I wake up in the morning or go to bed at night. They certainly aren’t sitting next to me making sweet dog sleep sighing noises as I type away on my computer.

The kids have been asking for a dog for years. As most kids do, they want everything: Cats, dogs, birds, fish, flying squirrels, rabbits. You name it, they have asked for it at some point. But the dog thing has been pretty consistent for many years. I could relate. I used to want one too when I was a kid. Something finally clicked this year. They are 9 and 12, so they are old enough to help with the care of the dog. They are full of energy. They don’t sit in front of the TV or computer for hours so they can be active with the dog. They both are good with animals and have demonstrated (somewhat) with the cats that they will help out. This year, a dog was top of the wish list at Christmas for them both. (I have since found out that was a planned act of collusion.)

When I finally made the decision to get a dog, everyone I told had the same reaction,”NO. Don’t do it. Are you crazy? You know how much work they are? You already have too much on your plate. You are too busy a family.”

Well, as I have mentioned before, I am hard headed.

Guess what? We got a dog. A Border Collie from a rescue organization. Getting this dog was more cumbersome than having a kid. Referrals, more referrals, a home visit, follow ups required. If only every parent had to go through this….

Wanna know what changed my mind? Frances.

Several months ago she said something that honed in on my weak spot.

“Mom, you know if we don’t get a dog soon, it will be too late. I am almost 13 and in a few years I won’t want one anymore and I will have spent my whole childhood without a dog.”

Bam. There you have it my friends.

So, I started warming up to the idea and REALLY thinking about the pros and cons. The pros won.

I did research and realized that the dog would not only be great for the kids as we deal with Jim, but the dog will be great for Jim as well.

Whenever you ask Jim what his favorite animal is, his reply is always the same. A dog. He had a dog (Sasha) growing up and I have heard many, many stories ever since we met about Sasha. But when I would mention us getting a dog, he was always very adamant about not getting one. I am not sure why.

Now that we have Duke, he is very happy. Jim plays, pets, talks to and spends all day with our new family member. I asked him why he never wanted one when he is clearly so happy having a dog and his reply was, “because they are a lot of work and I didn’t think we could commit to that.”

Well, we have and it has been great. So far anyway. I don’t want to jinx ourselves. We were very fortunate that the foster mom taught Duke many things before he joined us.

I think I made the right decision. All of us have bonded with him. Brad has been having a hard time with the obvious decline Jim has shown in recent weeks and now that Duke is here, Brad is happy and focused on something else.

Frances sees Duke as someone to take care of and another reason to make some lists and to work on a project.

Jim has a companion and a buddy.

I have a family that is happy and relaxed and able to think about something other than Alzheimer’s. And I have fallen in love with him too. I miss him while I am away at work and worry that Jim is remembering to let him out or to put him in his crate. But it is a different worry than I am used to now. It is a worry that I have some control over. The obvious irony is not lost on me.

Yes, a dog is a lot of work. Yes, we are a busy family. Yes, they are expensive. Yes, it will be more responsibility for me. Yes, I now have to make sure Jim is cognitive and aware of something else during the day. Although we have had a few minor incidents, Jim has stepped up to the plate and I think this has been really good for him. It has been a rough holiday season and Duke is a very bright spot for us all.

The smiles, laughter, excitement, happiness and joy far outweigh any of the negatives that were thrown at me.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (10)

It’s that time of the year….

Speaking at the Walk Kick off 2012

Speaking at the Walk Kick off 2012

As I have mentioned many times in my posts, it is going to take EVERYONE helping to make a difference in the fight against Alzheimer’s Disease. This is an ugly disease that NO ONE survives. The family members and friends left behind might survive, but they are deeply scarred.

One of the organizations that has helped us and many others, the Alzheimer’s Association, is kicking off their annual Walk to End Alzheimer’s campaign. No matter where you live you can participate. There are a couple of different ways to help:

First you can start your own team. Go to alz.org and register your team. Once you start a team, ask your friends, neighbors, co-workers, etc. to join your team. Then you each will raise money. You will be given a link to give others so they can donate, or you can do things like bake sales, raffles, yard sales, car washes, whatever tickles your fancy, to raise money.

Second, you can join someone else’s team. If you would like to join mine, please register here.  If you join my team, Garnering for a Cure,please help our team be the highest fundraiser this year!

If you don’t want to lead a team or join a team, you can simply click here to donate. Every dollar adds up to the next, so no matter the amount, your donation is appreciated and counted!

Any of these works. Our local walk organization is hosting an Alzheimer’s Awareness night at a local baseball college summer league game and will be selling raffle tickets to win a new Toyota Corolla. I have team members that will be selling these tickets, putting cans at work and organizing bake sales to raise money. Use your imagination and involve as many people as you can. If you work at a school, do a school fundraiser. If you work at a bank, ask if you can put out cans for change or maybe sell lemonade one day. If you work at a store, ask if you can have customers round up to the nearest dollar and take the difference for your team. There are lots of ways to raise the money and stay in your comfort zone.

Part of being on the team, is working together to help raise money. This money goes into funding research. This money goes into programs for families like mine that are struggling daily to survive. This money helps provide support groups, awareness and education and so much more. Part of being on a team is having FUN! I had a lot of fun last year working with our team. It is a good feeling when you know you are making a difference and you know that you are helping others.

This is a great time and a great way to get involved as little or as much as you would like (or can). I have so many that reach out to me asking how they can help. Telling me to let them know what they can do to help us. THIS is what you can do.

The Alzheimer’s Association has given  over 3 million dollars to fund research. I can tell you from my own personal story they have helped us in numerous ways and continue to do so. When you get the news that someone you love has a disease that has no cure, no treatment and can last for many, many long years, it is very nice to have someone to turn to. THIS is how you can help.

When you sign up, you are making a difference and you are making a commitment for the End of Alzheimer’s to begin with YOU.

Speaking at the Walk to End Alzheimer's kick off, July 2013.

Speaking at the Walk to End Alzheimer’s kick off, July 2013.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comment (1)

The Letter: Please pass this along to your Representative

Frances seeing Brad for the first time, March 2004. (That is Jim holding Brad.)

Frances seeing Brad for the first time, March 2004. (That is Jim holding Brad.)

 

Dear Senator Warner,

My name is Frances Garner and I am 12 years old. I live in Newport News, VA and I am in 6th grade. I play softball, field hockey, play the violin, saxophone and piano. In the summer’s I swim on a summer swim team for a local pool. I also was part of my schools’ Battle of the Books team and track team. When I graduate from high school my goal is to attend Yale University. I would really like to play softball for them.

I have a younger brother who is 9 years old. His name is Bradley. He plays baseball and basketball and plays the piano. He also swims in the summertime too.  He is super smart in math and is really funny.

Our Dad is 51 years old. Our Dad has something called Early Onset Alzheimer’s Disease. I don’t know a lot about this disease, but I do know that my Grandmother (my Dad’s Mom) died from this a long time ago before I was born. My uncle also died from this last year when he was 52. Now my Dad has it.

My Dad doesn’t work anymore. He used to. When I was born he was in the Air Force and then he retired from that and started working for a contractor. He lost that job last year. My Mom works full time. I worry about her. She seems really stressed most of the time. I can tell when she gets stressed because she doesn’t have as much patience with me or my brother or my Dad. Dealing with all of us takes a lot of patience I think.

My Dad forgets conversations we just had. He forgets to check Bradley’s homework or he forgets what time or day we are supposed to be somewhere.  Since my Mom works a lot, she stresses because she can’t be here helping and keeping up with all that stuff. I try really hard to help out, but I don’t think I do a really good job.

My Mom and Dad just went up to Washington DC recently to ask you for help. They are asking for help because Alzheimer’s Disease runs in my Dads family. My Mom is totally freaking out because she is worried about me and my brother. She wants to find a cure before we are anywhere close to my Dads’ age.

I don’t worry about it too much. I am really sad about my Dad. He is  a great Dad. He plays ball with me and fixes me food and he is a really nice Dad. He is really smart and I love him very much.

I worry about my brother though. I think all of this disease and dying stuff is going to bother him and affect him more than me. Plus, he is my little brother. I love him a lot and he is one of my best friends. We hang out a lot together. I sometimes think about what would happen if he gets the same thing as my Dad and Uncle and Grandmother. I don’t want him to get this disease. I want him to always be my little brother (even if he gets taller than me) and I don’t want to lose him because a cure hasn’t been found because the money hasn’t been given to research now when my Mom is asking for it.

Can you please help us?  I don’t know how much money it will take but I think we spend a lot on other stuff that maybe can also be spent on research for a disease that is killing my dad and might one day kill me or my brother.

Thank you.

Frances L. Garner

Frances checking on her new little brother, March 2004.

Frances checking on her new little brother, March 2004.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (3)

D.C. Success

Frances and Brad at the Capitol, July 2013.

Frances and Brad at the Capitol, July 2013.

Wow! What a crazy, hectic week. Work, a trip to DC, a kick-off for our local Walk to End Alzheimer’s and more work. It has been busy, but also a very rewarding and encouraging week. One of those weeks you need  to make up for the weeks that push your limits beyond where you think you can go.

On Wednesday, Brad,Frances and I drove up to Washington D.C. so Frances could hand deliver a letter she has written. I am posting this letter for you  to read on Sunday night. It is a letter that I think shows what an amazing, mature and strong young woman she is turning into. I warn you now, it is probably more touching than anything I have written. But I digress. Back to Wednesday.

Our first scheduled appointment was with Representative Scott Rigell for 10:45 a.m. On a good day the drive is 3 hours. With morning traffic, you can count on an extra hour. Plus trying to find a parking spot and then walking to the building. So, we left at a very early 6 a.m. Have I mentioned to you how much of a morning person I am not?

Luckily, there were 3 of us in the van and I took full advantage of the HOV lanes. We arrived on time, with a slight hiccup. IT WAS HOT. I mean, HOT and HUMID. Walking from our car to the first meeting took about 20 minutes. In that amount of time, I sweated. A lot. I quickly went into the bathroom to blot the sweat off my face, only to realize that my makeup had melted and I now had sweat rings under my arms. Are you kidding me?  I mentally made a note to forgo any kind of arm lifts in the immediate future.

We walk into Rep. Rigell’s office and there are 3 people in suits waiting ahead of us. Another mental note: we have 30 minutes to meet and greet and get back over for our

Rep. Rigell, Karen, Frances and Brad. July 2013.

Rep. Rigell, Karen, Frances and Brad. July 2013.

next meeting. As I sit in the waiting room trying to figure out what we are going to do if we are late, in the Congressman walks. He apologizes to the others waiting and asks them to reschedule for later in the day. Then, we are ushered into his office for a quick, but gratifying picture opportunity. He sits Frances and then Bradley behind his desk. Frances tells me later that his chair was really comfy. He signs an autograph for Bradley. I ask him why he hasn’t co-sponsored the Hope for Alzheimer’s Act. He apologizes and tells me he is going to, he just hasn’t yet. He tells me that he will do whatever he can for us and that this is very important to him. I believe him.

Rep. Rigell and Brad, July 2013.

Rep. Rigell and Brad, July 2013.

 

Since then I have received an e-mail from his office with the promise to co-sponsor the Hope for Alzheimer’s Act. It is in process…. YES! One down, one to go.

We finish our call and we have 15 minutes to walk from one side of the Capitol to the other for our next meeting with Senator Mark Warner. And it is now even warmer than it was 30 minutes prior. More sweat and now my hair is sticking to my neck and I think my feet have increased in size along with my fingers. Great.  Thankfully the kids are with me and you know, kids have a way of helping you put things into perspective. Bradley tells me that “they don’t care what you look like Mom.” and Frances tells me “you look fine.” Coming from a 9 and 12 year old, I quickly feel better knowing they usually tell me how it is. (Plus at this point I am a little desperate.)

Frances and Brad riding the underground trolley at the Capitol, July 2013.

Frances and Brad riding the underground trolley at the Capitol, July 2013.

We arrive at Senator Warner’s office with 1 minute to spare. When we arrive, the receptionist asks me if I received the e-mail asking to move our meeting from 11:15 to 1:15. No, I hadn’t. Must have gone to my spam folder. In my mind I am already trying to decide how we can avoid spending the next 2 hours in the 150 degree heat outside. In walks Luke Albee, Senator Warner’s Chief of Staff. He immediately alleviates my concerns as he asks an intern to give us a tour of the Capitol. Then we will meet him for lunch and then we will meet with the Senator. And, oh, by the way, we don’t have to go back outside because there is a trolley from their building to the Capitol. I want to hug him, but I can’t raise my arms…..

Sen. Warner, Karen, Frances and Brad. July 2013.

Sen. Warner, Karen, Frances and Brad. July 2013.

We have a wonderful tour followed by a wonderful lunch. Miraculously my two, beautiful children acted beautifully. All of the teachings of all the manners seemed to come together during our tour, our lunch and our visits. There are small miracles sometimes… Then we are back to the office for our 3 minutes with Senator Warner. Maybe 3 and a half. But that is all we needed. Frances gave him her letter, answered  his question of what it says and we get some pictures.As I put my hand on his back to pose for a photo, I feel dampness. I bet if he took off his jacket he would have sweat rings too! Guess even the powerful have to deal with the same heat us little people deal with. Then we are being ushered out of his office. His next appointment is ready. I am panicking inside of my head (again). Wait. We haven’t gotten an answer from him. We haven’t really asked him to co-sponsor the Hope for Alzheimer’s Act. So I shake his hand, thank him for his time and quickly plug the real reason we have driven all this way. Again, my children are miracle workers. Senator Warner agrees to co-sponsor the Act. YES!!! SCORE! And our trip is a success. Two for two.

The next day I receive a call from Mr. Albee, following up and re-iterating that the Senator will be co-sponsoring the Act. I tell him “Thank you. I feel like I have done something good.” “It wasn’t you, it was your kids.” And Bam. I am back down to earth.

Doesn’t matter.  All that matters is the end result and we have gotten a very small victory in one battle of a huge, huge war. But, you have to win the battles in order to win the war.  And so I take a breather and prepare for the next round of battles.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (3)