This is an Important Statement for you to Read and Share

Jim and Brad playing some ball at his new home.

Jim and Brad playing some ball at his new home.

I have wanted to write this piece for a while but I haven’t wanted to offend anyone or hurt anyone or cause hard feelings. So, I write this with the understanding I am not trying to call anyone out for offering us suggestions or trying to help our family. Just the opposite. I am writing this particular piece in the hopes of EVERYONE reading it and understanding the gap and the disparity of assistance for many, many families in need of help. If you care at all about our society as a whole, you will read what I am about to write.

First of all, thank you to everyone who has sent in suggestions. I appreciate you taking the time and making the effort and in some cases, doing quite a bit of research. Now, let me speak freely without the worry of being taken the wrong way.

Stop. Stop telling me that I just need to make one more phone call or fill out one more form.

I have. I have filled out every form known to man. I have made call after call after call. Many times while Jim sat helplessly, just feet away, listening to me repeat our story, his story. His burdens on our family and feeling the guilt he so wanted to avoid are now seared into my mind as something I threw in his face over and over while trying to find the answer that has alluded us and continues to do so.  I have gone online and researched. I have spent hours and hours and hours (you really wouldn’t believe) just trying to find an answer. I think I have worked harder and spent more time, energy and filled out more forms than I did in all of my years of college combined.  I have always believed in my heart that we would have help. I have always believed that when the time came, Jim would be taken care of and I know he thought the same. We both assumed  I would just keep working and it would all work itself out. We were wrong, wrong, wrong.

Jim is 53 years old and a 23 year veteran of the US Air Force.

Our children are 11 and 14.

We are middle class.

Jim had Tricare Health Insurance benefits when he retired from the Air Force, which also covers myself and our children.

After being out of work six months due to his Early Onset Alzheimer’s Disease disability, Jim applied for and obtained SSDI (Social Security Disability Income) This is a program Jim paid into with every paycheck he received starting at the age of 14. It does not come close to replacing the income he was earning while working, but it most certainly keeps our family afloat.

After two years of SSDI, Jim was automatically switched from Tricare to Medicare. Medicare is a health insurance program. It is not a program that provides Long Term Care for people with Alzheimer’s Disease. It covers doctor visits and hospital stays, just like any other health insurance program.

I work out of our home as an independent contractor. I have also just started a part time job this week in the hopes of helping with Jim’s care.

I applied for Medicaid for Jim in July. You cannot apply until you need this program. So, even though we knew the day Jim was diagnosed many years ago we would eventually be applying it was only when he needed more help than I could provide that we could fill out the mound of paperwork, meet with Social Service workers and start the process. This is something I strongly believe needs to be addressed and changed. But, I will save that tirade for another day. We were turned down for Medicaid. Not because of our income, but because Jim does not qualify medically. He does not need “skilled nursing”. He does not need someone to monitor his blood pressure or blood sugar. I promise…I am not making this up.

We have gone to the Veterans Administration Hospital in Hampton, Virginia many times.  I was told each time there was nothing to help us. His disability is not service related and he is not 65 and he makes more that $26,000 a year. I went back and I called. I have been desperate trying to find help. I have sat and cried, feeling like a forsaken child of the country I have always loved and been proud to call mine. Nothing. No help to cover his care. We did qualify for the 30 day respite from the VA this summer which was a Godsend. For this, I am very grateful.

I couldn’t understand why others making suggestions of different programs he will or he should qualify for has bothered me so much. I know that each person who writes to tell me that the VA will help or Medicare will help or Medicaid covers their uncles care means well. I know when you write with your stories and your suggestions, you are trying to help. Unless you can actually make a program start covering Jim’s care, please do not tell me what I am doing wrong anymore. That is how I take it. I shouldn’t, but I do.

Recently I was talking to a good friend about this. I told her I understood people were trying to help because they care and they want to help our family but with each sentence saying there is help out there if I only would do this one thing, I was hurting more and more. I couldn’t figure out why. Why would it bother me when I know I had done everything and I know their intentions were good and genuine?

“Because it is a sore, raw subject for you Karen. You still feel like you have missed something and you also feel like there should be and is a program to help if you can only find it. Each message reminds you that the system is failing your family and it makes you feel like you are too.”

And there it is. I struggled to understand something that she layed out before me to make perfect sense.

I agree with all of you: There should be help. There shouldn’t be a need to have a charity page asking for donations from everyone under the sun to take care of Jim. It was a most difficult decision to do so, but I cannot take care of him the way he deserves. I cannot change his diaper and help him shower and help him all day long with finding something to occupy himself. I was failing him and our family. But this is not anything that qualifies for help. Needing assistance with eating or hygiene does not entitle you to receive help with your loved one. We don’t fit into a black and white box and therefore there are no possibilities of going outside the box to use common sense to help. Either you fit the criteria or you don’t. We don’t.

I have met with our State Senator, staff representing our US Senator, social services, Medicare and Medicaid representatives and VA representatives. Nothing yet. There is a slight hope we may receive some benefits from the VA, but my attorney (who completely rocks) and a local reporter and our US Senator haven’t been able to make it happen yet. But, you never know. I am still optimistic, but now with a much clearer sense of probability.

So please understand I have put more effort, energy, time and hope into finding this solution that must be out there somewhere than I have put into anything else in my life. It is like pouring salt on a wound when you tell me I haven’t done what I have been trying so very hard to do for months now.

I appreciate your belief in our system, as I have always had your same beliefs, but sometimes, we are all wrong. Please keep writing me and if you genuinely have something that you have found that can help our family, please share as I am hoping there really is assistance available. Otherwise, please start a conversation with your friends and neighbors. You may be surprised to find they have been through this same process. And if you are so inclined, please start advocating for a change. It will be too late for our family, but others coming behind us, which could be your family, need us to stand up and demand all of our citizens be cared for and treated with respect and dignity. No one should lose their homes, their life savings or their own health in a  land that prides itself on prosperity.

Jim, Frances and Brad. April 7, 2012. Jim's 50th birthday.

Jim, Frances and Brad. April 7, 2012. Jim’s 50th birthday.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (44)

Better Them Than Me

 

Clowning around in 1998. Who knew what would be lurking ahead for us?

Clowning around in 1998. Who knew what would be lurking ahead for us?

Today there was another school shooting. As I listened to the information about what happened on the radio, Frances told me about the lockdown practices they have had at her middle school. I couldn’t help but think back to when I was in school….there was never a drill for a shooter or a thought about someone possibly coming into the school to harm us. Then I thought about the parents who worried about their children when they heard about the shooting and the parents who were unlucky enough to get the call that their child did not survive. Or worse, their child was the shooter. My heartfelt condolences to those families.

Then my mind drifted as I drove and I thought about what it would be like if that happened to us. Don’t we all normally do that? We try to put ourselves into the shoes of others….whether it is a tragedy or winning the lottery…we try to imagine what we would do.

Yet, I wonder, where do we stop imagining ourselves in someone else’s shoes and start thinking it will never happen to us? Isn’t that why people still smoke? Still ride in vehicles without seatbelts? Still drink and drive? Still mix alcohol and drugs? In typical human fashion, we all tend to gravitate to the “I am so sorry that happened to them, but it won’t happen to me” scenario.

I think every single one of us is guilty of this in some shape or form. We have empathy for others going through a horrible crisis, but we stop short of becoming petrified we will also fall victim to whatever atrocity lurks around us. Probably some form of self preservation at its rawest form.

Then, before you have any idea what is going on, you become immersed smack dab in the middle of some awful thing that is ruining your life and the lives of your family members. In my case it is Younger Onset Alzheimer’s. And it sucks. Big time. As I have mentioned many times, I have friends and family that are helping out and doing whatever they can to make this tough road a little smoother. But no matter what they do, they can’t REALLY help. They can’t cure Jim. They can’t stop the progression. They can’t save our children from losing their Dad. They can’t change the fact Frances’ and Brads’ childhoods will be encased in Alzheimer’s, Alzheimer’s, Alzheimer’s. They watch, they listen, they do. Then they go home and get on with their lives with their healthy families. They see us and are grateful they aren’t us. They know it could happen to them, but think it won’t.

I am not here to be a “Debbie Downer” but let me point out something to each of you: as you get older, the chance that either you or someone you love (parent, spouse, sibling, friend) will succumb to the horrors of a dementia is unbelievably high. Unless a cure, a vaccine or some type of treatment is found, we are all going to feel the excruciating pain and agony of dementia. And the financial burden. Which, in all honesty becomes so consuming you find yourself unable to focus on the person you care so deeply about because you are just trying to survive. And when your loved one is diagnosed, it will be too late to pour in money and try to have your voice heard. If you want to save them or possibly yourself, the time is NOW to do something.

Yes, we all feel like the bad stuff is horrific when it is happening to someone else and we are saddened, yet we are confident it won’t happen to us. What are you going to do when it does?

Screen Shot 2014-10-24 at 11.23.02 PM

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)

Dear Mr. President…

TJ_Quote-01

This is a letter I recently sent to President Obama. I hope you will not only read this letter, but take 5 minutes to write your own letter to your representatives and to President Obama. Write a letter to your local newspaper editor. Write a message to USA Today. Write to your local TV stations. It is time for you to share your story. Imagine if we ALL write letters and share our stories. 1000’s of voices can no longer be ignored. The time, the momentum and the need is here. Thank you for being part of the solution. We can’t do this without you.

Dear Mr. President,

Congratulations on your successful State of the Union address.  I was glad to hear that more people will have access to jobs and higher wages. I was happy to hear that our military is getting more support. I was grateful that childhood education is important to you.

I was extremely disappointed by the lack of reference to Alzheimer’s Disease. There was no mention of helping caregivers and funding more research to possibly find a cure or at least a treatment. Are you aware that Alzheimer’s Disease is the only cause of death among the top 10 in the U.S. without a way to prevent, cure or even slow its progression?

Let me introduce myself. My name is Karen Garner and I am 44 years old and live in Newport News, VA. I have two children, ages 9 and 13. I am married to retired Air Force Senior Master Sergeant, James B. Garner. He is 51 and has Younger Onset Alzheimer’s Disease. We have been dealing with the early stages for about 4 years now. He is getting worse. He is having difficulties with his short -term memory and finding the right words to start or finish a sentence. He can no longer multi task and has trouble finishing something he starts. Please keep in mind he was a Sr. Msgt. He worked hard and was a very proud serviceman. Now, he cannot keep a schedule straight or even figure out how to hang a picture. Unfortunately we both know these symptoms are the easy ones and his progression with the disease will continue to get worse month after month and year after year until he is no longer able to write, bathe himself or swallow.

We have been advocating in Washington, D.C. for a few years now, asking for more money and help. Although the budget passed this year includes the highest amount ever given for AD research, it is far from what is necessary to realize progress. Although there was money within the $122M increase allocated for support services, there is still not enough money for support for caregivers, who are going through severe struggles each day for years and years and years. This is not a quick disease. People live with Alzheimer’s an average of 4-8 years after noticing symptoms but up to 20. This is a disease that affects the whole family and destroys them.

It is time to move this epidemic where it belongs; at the top of the list of funding and awareness. Only then will a change take place. Do you know how much money was given to Alzheimer’s research funding in 2013? 480 million. That sounds like a lot to the lay person, but I am sure you can understand that in reality this is not a large sum. Not when compared to cancer (almost 6 Billion) or HIV/AIDS (just over 3 Billion) or Cardiovascular Disease (over 2 Billion). Those all have treatments and cures. They can have survivor walks. Alzheimer’s Disease cannot. There are no survivors. When you sit in front of the doctor and finally get somewhat of a diagnosis you are given no hope. No chance of survival. No good timeline. No support. No help. None. You are simply told to come back in 6 months.

As a country, we spend over $140 BILLION a year on Medicare and Medicaid for those with Alzheimer’s. Just to help take care of them, not even taking care of the caregivers. Please also keep in mind that $140 Billion for Medicare and Medicaid does not include the unpaid caregivers that have quite their jobs or now need medical help themselves after struggling to take care of their loved one that can no longer take care of themselves. Even our 9 year old son does not understand how we can give so much money to other ailments that have cures and treatments and survivors, but so little to something that affects so many and has nothing.

I could fill this letter with lots of statistics. I have already put more in than I am comfortable with. But it needs to be said. It needs to be talked about and it needs to be addressed.

If we do not do something NOW, this epidemic will bankrupt our country.

With all due respect, I am asking how you plan to address this national health crisis?

I have a very good reason. Actually TWO very good reasons. You see, my husband has Younger Onset and his brother died from Younger Onset and his Mother died from Younger Onset. They all started showing symptoms around the same age.

Mr. President, I am writing to you as a Mom of two equally beautiful, bright and amazing children and I am begging you to stand up for the millions of citizens of this country that are affected, will be affected and have no one to turn to for help. I am begging you to save our children. I am begging you to help save the millions of caregivers that are suffering unimaginable grief for years on end.

My hope is that before you leave office, you will be able to introduce the first Alzheimer’s Disease survivor. That would be a legacy unlike any other.

Thank you for all of your hard work and dedication to this great land of ours. Thank you for taking the time to read this. Thank you in advance for listening and making Alzheimer’s Disease a priority, just as was discussed in the recent G8 Summit in London.

Sincerely,

Karen H. Garner

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (6)

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)

Inquiries answered.

Dealing with Alzheimer's and holidays.

Jim and I New Year’s Eve, 2013.

Happy 2014! I want to start off the new year by answering a few questions that have been asked (some repeatedly) since I started this blog last Feb.

I am working on a new post as well and have decided that I will share even more and if possible, provide more insight into the nitty gritty of living with Younger Onset Alzheimer’s Disease. It is hard sometimes to open up about something so personal, but the overwhelming response of love, support and camaraderie is healing and soothing to my soul.

For now, here are some questions and answers for you.

As always, thank you so much for all of your love, support, encouragement and feedback. I have found this journey to be a bit more survivable because of all of your kindness.

How did you first know something was wrong with Jim? What was it like before he was diagnosed?

About 6 or 7 years ago, we started having a lot of problems in our marriage. We went to a marriage counselor and it was very frustrating. I would go in bitching and complaining about Jim, he would agree with everything I said while promising to do better and the next session would repeat itself all over again. I felt very guilty for constantly being upset with him and needing to correct him. I was told I was too hard on him and expected too much. (not by Jim) I couldn’t understand why he was at times saying things that just didn’t make sense; otherwise seeming completely normal and like there was nothing amiss. There are a couple of examples I have used, the easiest one relates a time we were driving down a road under construction and one of the kids asked how they determine the speed limit. Jim shot back quickly “by the number of potholes.” An argument ensued and it was just one of many like this that would happen sporadically over a couple of years. At that time, Jim was not forgetting anything. He wasn’t really losing anything. He was still pretty much himself, but at times not. I was really contemplating leaving him because I was just so unhappy and so was he. We couldn’t afford to separate and soon enough his “episodes” became more noticeable and more common. I knew something was wrong with him after he got confused about a bridge in Georgia. I honestly believe the reason Jim was able to be diagnosed as early as he was has a lot to do with the fact that I am a type A personality, that I knew him very well and that I am so in tune with how he normally would be. It wasn’t in my personality to just let things slide. I also believe that at times it is good that we learned so early, but I also think it will make our living Hell seem that much longer.

I wrote my first post about this very topic. Click here to read that essay.

Where is Jim in the progression of the disease?

This is a tricky one to answer for me. I will tell you that he originally was diagnosed with Mild Cognitive Impairment with the likelihood of developing Younger Onset AD because of the history in his family. After our follow up visits to the NIH this past summer, we received confirmation that Jim is now diagnosed in the Early Stages of Alzheimer’s Disease. His short term memory is very bad. He is forgetting names, conversations, what he just did (or didn’t do) and little nuances like whether or not he should take a shower or shave. He is not able to multi task at all. He is still driving, but only in places he is familiar with (we have had him tested for this and have gotten two different ok’s). He no longer seems to be able to relate to things going on; seeming aloof or indifferent. He never asks about finances or kids schooling or my work. He is able to help with dishes, the laundry, math homework and other easy chores around the house. He gets confused pretty easily and I have noticed his beautiful handwriting is no more. It is slowly turning into shaky, hard to read verbage. He keeps lots and lots of notes to himself to remember what to do and I think at times what not to do. He is losing many things (sets of keys, passport, license) He has kept his sense of humor, his smile and a fantastic attitude. He plays tennis, jogs and walks our new family member, Duke. He tries hard to maintain his core self and to remain a steadfast partner to me and father to Frances and Brad. I think he does an exceptional job. So much stronger and better than I would ever hope to be in the same situation. Many times someone will meet him for the first time and carry on a brief conversation with him and have no idea that he is suffering from such a cruel disease.

How are the kids handling all of this?

This is extremely personal and I feel like it would be their place to share, not mine. Although they are both aware of my blog, Frances reads it on occasion, but it seems to me that this is something for them to answer. I will say I have taken them both to a counselor. I try to remain open about what is happening to our family. I try to include them as much as they want in events and discussing how Jim is doing. I will tell you that it is very, very difficult to watch them get frustrated with their father and then see the regret and the guilt that soon follows (just like I often go through). They are both extremely bright, loving and active kids. Jim and I really just couldn’t be any prouder.

Does Jim read the blog or even know about the blog?

Yes, Jim knows about the blog. We had very long, heart to heart discussions before I even started. He started reading it once or twice and it was very difficult for him. I don’t believe he has read it since then.  He has been 100% supportive 100% of the time. Not once has he asked me to stop or to not share something. He trusts me  and wants our situation to help others. It is very important to him to have a change come about not for him, but for our children.

Will I write a book?

I honestly had never considered this until I had many people ask me. I am pondering and contemplating and deciding. I will keep you posted. I really am not a writer by trade in the least bit.

How do I manage financially?

Well, I work full time. Jim receives a retirement from the Air Force and he receives Social Security Disability. Plus, we have been EXTREMELY blessed with help with dinners, gift cards, monetary donations and help in many ways. Without the help we have received, I am not sure we would have made it this far without losing our home or car or going hungry. Ok, I don’t think my parents or closest friends will let us go hungry. But, you get the idea. It is very tough and I know it is only going to get tougher when we need someone to stay with Jim during the day or full time.   It seems when I am desolate and down to our last few dollars, miracles happen. I able unable to explain it any different.

What is my plan? How do I plan on making a difference?

I will continue to advocate with our policy makers and I will continue to share our story. I have a dream though. I would like to start our own Foundation. I would like to work full time on helping other caregivers. I have a plan, but I just don’t have the time or resources yet. I am working on it. It just isn’t happening as fast as I would like, but I am an impatient person. Right now I struggle with my work demands and hours needed elsewhere. I am acutely aware of how this is changing and how much it is causing me stress, lack of sleep and unhappiness. In reality I need to work. For not only financial reasons, but for my sanity and to make me have a life outside of my own, tiny, self-centered world.

How do I manage?

I am not sure I feel like I do. I often wonder how I am going to survive this journey. I wonder if I will survive the next round of declines and financial decisions and children issues and I am not sure I can. But, I live another day. I focus on today. I focus on what I can do today that I couldn’t do yesterday and I can’t do tomorrow. I can tell you that my parents and my friends have buoyed me above my fray and kept me from falling into an abyss of darkness I wouldn’t be able to return from.  I just do the best I can while I can. I constantly have faith that something better is just around the bend. There are times that I waiver from this belief and it is at these times that I am at my lowest. I struggle to pull myself out of any desolute and despair I feel and try to re-focus on what I can do now. What is in my control? What isn’t in my control? Being a Mom. Being a friend. Being a wife to a man that would be so terrified to know the anguish and stress he has caused his family and will cause his family.

Do I make money off my blog?

No.

Do we attend a support group?

Yes. I have connected and bonded with several other women who struggle with the same frustrations I do. Jim meets at the same time with others afflicted just as he is and they all seem to be about at the same stage of the game. We meet once a month and I am the youngest and the only one with children at home. It is coordinated through the Alzheimer’s Association and utilizes volunteers. I look forward to our gatherings and I feel a kindred spirit between us.

Has Jim tried coconut oil, fish oil or any other remedies?

Yes, yes and yes. If it has been published and has been regarded as a possible help with his symptoms, we have tried it.  But I do thank you for the continued sharing of such articles and information. We even tried the hyperbaric chamber.

I hope I have answered your questions and I thank you again for reading my blog, sharing your stories and sending me so many positive thoughts and well wishes (and advice).

May 2014 bring us all closer to the one thing that will bring us true happiness. A cure for Alzheimer’s Disease. 

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)

Living With Alzheimer’s Roundtable

DC Roundtable

Follow the discussion by Twitter

 

This Thursday, September 19th, I have a HUGE task.

I have been invited to participate in a Roundtable discussion about Living with Alzheimer’s. In Washington D.C. In front of live media and with them taping me. Did I mention this would be live? And taped?

On the roundtable panel are doctors, researchers, executives, ceo’s, founders, authors and another caregiver. And me. I am representing Younger Onset Alzheimer’s and caregivers. Me.

How did this happen?

Somedays I don’t think I can put another foot in front of another and don’t see how I can make it through. Now I am pulling myself together, leaving the kids with Jim (that is a worry) and headed to D.C. to be heard. To speak for all of you that write to tell me your stories. I will be speaking for the wife that is changing her husband’s Depends. I will be speaking for the husband that is fighting with doctors just to get his wife diagnosed. I will be speaking about the lack of funding for all of us and how we are losing our homes, our jobs, our savings and the dreams of a better future.

There will be videos. There will be Facebook posts. There will be the releasing of the World Alzheimer’s Report 2013. There will be another roundtable discussion in Europe and another in Asia. (I was not asked to those)

Can I tell you something? I am excited. I am nervous, but I am excited. I am excited about this opportunity and honored I was asked. I am also excited to be heading to D.C. by myself. Alone. I love big cities. And I love being able to hang by myself in a hotel room. Doing whatever I want. Watching whatever I want on TV. One night will be enough away from Frances and Brad. I will be more than ready to get their hugs when I return. Jim is proud. I can tell. He hasn’t said much about it, but I know he is. This is a little different than speaking to a group of caregivers or at a fundraiser. I want to convey to every one there the loneliness, the anguish, the heartbreak and the exhaustion that are behind every statistical number in that report.

I will try my best to make you all proud and to let our voices be heard as one. My friends, this is how a change is going to happen. Remember, it isn’t one lone voice that will change anything; but a chorus that reverberates around and around until it fills every nook and cranny and nothing else can be heard.

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

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)