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)

The Next Phase is Here.

Screen Shot 2015-09-04 at 1.10.45 AMI have started and stopped this writing numerous times. Too many to count. I’ve, no, WE’VE all known it was coming for a long time, but we didn’t talk about it. We hemmed and hawed and left it unspoken and hanging over us like the chill that comes with the first frost; so unexpected you are able to fein surprise although it re-occurs like clockwork each year.

Yep, you can see to the bottom right of this writing a new widget. A place to click. A place to give. A place for us to take. And if ever there was a time I was full of mixed emotions, this would be it.

Over a great length of time, we have had several people offer to help us fundraise. I have been flattered and a little surprised, but have held off. After all, there are always others in need and I have always felt there is a time we will need more help and if I can just figure out a way we won’t need any.

Over the past three weeks Jim has been in a locked memory care unit to allow myself and the kids a respite from his care. And let’s be honest, we haven’t even been caring for him as long as many others have. But, our family was under a great deal of stress and the walls were crumbling and I saw a source of support that I latched onto for dear life. And it pains me a tremendous amount to announce the three of us have witnessed something we didn’t expect or want to admit….life and “normalcy”. What a cruel woman and wife I am to say such a thing. But I always have promised to be honest: we found ourselves able to “be”. Be relaxed. Be loud. Be late. Be early. Be silly. Be happy. Ouch. The last one really hurts. It feels as if we are somehow vilifying Jim or ostracizing him in some way but we aren’t. We are trying to live as he declines. By doing this, we are carrying on as he wishes but even that knowledge does not erase the sting from feeling as if we are abandoning him or that he is forsaken.  Just the opposite.

While at this facility, not only have we been able to breathe easier, Jim has been happy. He has a simple life that remains constant and without interruption to his schedule. That is what he needs and being in our home makes this almost impossible. His new self needs quiet and peace which doesn’t happen often in a home with active children. Plus I worry about him on the stairs since we do not have a bedroom or a full bathroom downstairs. And I worry about him walking out the door. And I worry about him eating or drinking something he shouldn’t, hurting himself with a tool or  knife or something he would be able to use simply in the past. I hadn’t realized until he wasn’t with us how much I worried. And the kids have noticed too. Recently we were discussing all of this unforeseen change and they both agreed I am happier and not as stressed all the time. Another ouch and another not so proud Mom/Wife moment.

I sat and watched our wedding video for the first time the same night our very good friend, to whom I will forever be indebted, started the GoFundMe Page to raise money for Jim’s care. I cried. I laughed. I reminisced. By myself. There were guests there who have since passed. Couples now divorced. Images long forgotten through the years of marriage and children and life. And there was Jim. My groom. So proud. So handsome. So, so perfect….

This is all just a huge mess. I don’t want help. But we need it and I have run out of options. I have fought asking for anything for a long time and it wasn’t until a conversation I had recently with someone who went through losing a wonderful husband to Alzheimer’s said to me, “Karen, I would rather give to your family and know I am helping you than to anything else. You have exhausted all of the ways you thought you would be able to get help and there isn’t any help for you. We all know you have tried and that there isn’t anything out there. You don’t have a choice. You cannot possibly take care of two children and Jim. It isn’t fair to any of them and it isn’t fair to you. Let others help. Trust me, they want to. Many want to but don’t know how and with it being an organized way for them to give, I really think they will.”  I thought and thought about her words. I cannot express the gratitude I have to her for saying them, nor can I express how much I really don’t want to be in this position.

Yet, the world never ceases to amaze me. The support that has come forth is truly remarkable. We have already raised enough to cover care for Jim for one month! Obviously, we need much more, but wow! I am so humbled, so moved and really, for a rare instance speechless.

There are so many others who need help and I feel guilty for possibly taking something away from them. I lay in bed thinking about this. Thinking to myself that if I can figure out a way to take care of Jim, others can receive the aid and help I would receive. And I am so sorry I haven’t figured that out yet. But at the same time I have become desperate and see no other way. So thank you for your support and for your very kind words. Thank you for the stories of Jim. One friend posted on her Facebook page a story of how Jim installed their car seat when their oldest son was born because her husband was deployed. I had completely forgotten this and it was a reminder of how much Jim always did for others. In the throes of this complete and utter quandary I often forget just how handy and giving and genuine Jim was. It makes me sad to remember him from years ago, but it also makes me proud to be his wife and to be charged with his care. He trusts me and I trust that we will not be forsaken.

If you can give, please do. If you can’t, please know I understand and all I ask is for you to share this link with your friends so maybe they can. The more who see our story and our plight, the better the odds of us receiving enough to make it through.  THANK YOU SO VERY, VERY MUCH.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (19)

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)

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)

Please stay their Dad

 

Jim trimming the hedge. Oct 2013

Jim trimming the hedge. Oct 2013

 

“Mom, we don’t have any internet.”

“Ok, let me see if I can figure it out.”

I spend the better part of an hour trying to re-configure our wireless service, at the same time I am trying to fix dinner. I click all the right icons on the computer. I turn on and off the router. I call Verizon and stay on hold for much too long.

“Ma’am. You have no power going to your box. Is your home without power?”

“No.”

“You may want to check to see if the power cord is plugged in to your Verizon box outside.”

My usual response would have been, “Of course it is. No one has unplugged it. Something is wrong with YOU.”

But, I knew Jim had been fiddling outside today now that it had stopped raining and he had been working on trimming the hedge (which required power). My gut sank just a smidge.

I got off the phone, went outside, and sure enough, the power cord to our cable/internet box was dangling in midair.

I cannot focus on the time wasted. Or the fact that Jim would do something like unplug the cord, not remember unplugging the cord or not realize that he had once all of the chatter started in the house about having no internet or cable.

The hollowness I feel inside is becoming commonplace. It stays with me much too long. Although we have these episodes almost daily, it is nearly impossible for me to accept the upheaval that comes with each one. The time lost. The items broken and needing to be replaced. The mess left untouched. The items put in the wrong place.

The school notice that gets signed but there is no discussion or ramifications.

My heart is really breaking. Not only did we have the internet/cable episode, but after Brad went to bed I looked at his agenda to sign like we responsible parents are required to do daily.  Hmmm. He has a test tomorrow. I wonder if he brought home his social studies notebook to study. I wonder if he did study. I had asked him if he did his homework, but I hadn’t really pushed the issue.  Why didn’t I look at this before? Oh yeah, I was working, taking Frances to violin, fixing dinner and trying to fix the internet service.

As I search through his backpack for his social studies notebook, I see a slip of paper. I pull it out and see it is a notice that he had been disruptive in class. There at the bottom of the page is Jim’s signature.

“Jim, did you sign this?”

“No.”

“Is this is your signature at the bottom of the sheet?”

Jim grabs the paper, does a little hmphfffing sound, hands it back to me and says ,”Yes. I did sign it.”

“Did you talk to Brad? Do you know what this sheet is? ”Deep down, I already knew the answer.

“No.”

So, although Jim is capable of driving, trimming our hedge and doing dishes, I am asking Brad to make sure I am the one signing such paperwork from now on from school. I can’t count on Jim to play the Father card and discipline Brad and make sure that I know what is going on at school. Last year we missed several things because I had no clue. Another guilt trip….

I feel horrible. I don’t want to override him as a Dad. Jim  is a GREAT Dad. He loves his children immensely. He has patience like no one else I have ever seen. He is someone to emulate. But, I learned last year the hard way when I found out no one was helping Brad with his homework or going over schoolwork with him. I know some things are inevitable, but it doesn’t make it hurt less to go through them.

Jim just misses the boat slightly. It just can’t click with him that he is the DAD and it is his responsibility to stop the tantrums, stop the talking back and yelling, stop the arguing, focus on manners and chores and follow up with questions if the agenda says there is a test tomorrow.

I think Jim is so focused on himself, he can’t focus on someone else. And I say that with no disrespect to him. He must focus so hard on each thing he is doing, each thought he is trying to convey and hold together, it is just too much for him to take on the added burden of overseeing the children on a day in and day out basis.

I have said it before and I will say it again. Jim has always been a better parent than I. His patience, his knowledge, his ability to relate and to work hard are great examples and make him a great Dad. I am sadden beyond these words can express that our children won’t get the benefit of his great parenting skills as they traverse through adolescence and into adulthood.

Jim and Brad building a tower of power Oct 2013

Jim and Brad building a tower of power Oct 2013

 

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

Insert Foot Find Love

Well. I’ve finally done it. Put my foot in my mouth and done an interview that is getting NATIONAL attention for our cause, but at the same time coming across (understandably) as a cold, uncaring, unloving and selfish woman.

I went to DC and did a fantastic job speaking for all of us at the Living with Alzheimer’s Roundtable at the National Press Club. It was emotional and hard. It was draining. Being immersed in all things Alzheimer’s really wipes you out emotionally and mentally.

Then, I went back to the Alzheimer’s Association’s office for a phone interview with someone from CNN.com. Here was my chance to REALLY share our story. Really let the world know how difficult and frustrating and lonely and scary this path we all walk can be. Not just for Younger Onset, but for all of the families struggling each day as they watch a loved one slipping away.

So, I answered her questions and did so with a lot of candor and honesty. Honesty is the best policy, right?

As I was driving the 3+ hours home, I replayed my answers and the days’ conversations with the various people I had interacted with at the roundtable. My head was full of it all. Then it hit me. Shit. I think that sentence I said was not said right. I don’t think I put it the right way. I think if that gets printed, it is not going to sound good. I think it will overshadow the purpose of the interview in the first place.

By the time I arrived home and gave hugs and kisses to the kids and Jim, the article was up. CNN.com. National. And, yes, there was my quote. Without the emotion. Without the love. Without explanation of the measures we are taking to stave off symptoms and prolong Jim’s life while he is able.  Without mention of the countless hours we have sat in doctor’s offices, the hours of driving to appointments, the hours spent on my bedroom floor in pure agony and filled with the terror of losing Jim and the kids losing their father. Crying until there was no sound left to come from the depths of my soul.

No mention of the supplements and medications Jim has taken throughout the years. There was no link to my blog so readers learn more about our story. To see that I do love Jim. That I don’t want to lose him. That I want to keep him with us as long as I can. All readers will see is that I want him to hurry up and die and get all of this over with.

So, lesson learned (I hope). When giving interviews, make sure you don’t say anything that can be written independently and come across so uncaring and cold.

I am sorry. I feel like I have let so many of you down. I know I did a great job at the roundtable. I did what I was supposed to do. I gave them emotion and tears and some of the tears were theirs. That is what I was there for. This CNN gig was an added opportunity that I feel like I blew……

Fast forward a day. What an unbelievable response.  To quote the reporter from an e-mail she sent me: Your story has touched many readers today. I’ve never seen a story receive so many supportive comments.

It has been an emotional time for me. Worry. Stress. Relief. Emotional highs and lows. Crying in front of Jim and telling him I was sorry, only to have him hug me and tell me how much he loves me and what a good job I am doing. The e-mails and messages from so many friends and strangers that are supportive and loving and full of kindness and sadness at the same time. Thank you. Really. Thank. You.

All of this being said, I will not stop talking. I encourage EVERY single person that has Alzheimer’s or other forms of dementia that are able to, please speak up. Be heard. If you are a caregiver, a care partner, a loved one, a friend; SPEAK UP!! Our voices need to be heard. We need to make Alzheimer’s something that doesn’t carry a stigma. We need to make Alzheimer’s something that doesn’t put families in financial ruin. We need to demand a cure and treatments that work! Call your Congressman/woman! Write a letter to the editor. Talk to your friends and co-workers and neighbors. There is nothing to be ashamed of by dealing with this terrible disease. But living with shame and trying to hide it and to keep this battle inside of you is not helping yourself, your loved one or others that are going through this too. Let us all have our pain and loss heard. Even if it means being misunderstood and misrepresented.  If I can do it, so can you.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (15)

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)

Mrs. G, Break down your wall…

Jim getting breakfast at a diner before our first day at the NIH.

Jim getting breakfast at a diner before our first day at the NIH.

I want to tell you what our NIH visit was like. To put the experience; the stress of waiting, the drive up and back, the silence, the testing that shows progression, the knowledge we are participating in something that will help (hopefully) many others…..there are many more emotions and thoughts to express than I can possibly convey. I wish I could somehow share with you the FEELINGS of visiting the NIH.

Security at the NIH.

Security at the NIH.

When you first step onto the CAMPUS of the NIH, it is a little intimidating. If you have ever been to a college campus, that is what it is like. But behind a guarded fence. Where you must first pass through inspection. An inspection that is more thorough than airport security. Then you find your building. And it is LARGE. Larger than most college campus buildings and so confusing that you will get lost. Many times. No matter how often you return. And this building has two gift shops and a book store and a barber shop. And a grand piano in the grand lobby. And two cafeterias. And valet parking (you must get validated.) And a coffee shop. And MANY banks of elevators.

But, no matter how grand the piano or the cafeterias or the lobby, you are still in a waiting room. Sitting in an uncomfortable chair. Watching a TV show you would normally not be watching. Eyeing others that are walking past you; wondering what they are there for as they are probably wondering the same about you. All the magazines have been thoroughly read. You have gazed upon the magnificent artwork and spied the beautiful fish tank. But none of these things keeps you from focusing on the reason you have driven many hours and organized childcare (THANK YOU AGAIN) and put yourself in this place of waiting.

Building 10 at the NIH.

Building 10 at the NIH.

Our doctor at the NIH is wonderful. He listens. He talks. He listens. He talks. It is a great experience on so many levels. If our country’s healthcare could follow the pattern I see when we are there, well, let’s just say many people would still be around and the complaints would fall drastically.

The tests Jim participated in were the exact same ones he did 2 years ago. This particular study is looking at inflamation in the brain of Alzheimer’s patients.This will allow them to see the changes that have taken place. In my mind, Jim has declined drastically. There are major differences and it is all much more noticeable. Our doctor told me there were some minor changes. I mean, 2 years ago he was still working full time. Two years ago he was only showing symptoms every couple of days. Now it is daily. Hourly really. Hmmm. How is THAT possible. I know he,(the doctor) sees much worse. I know much worse is coming our way. Believe me. I live, breathe, sleep, eat and dream of it. But I haven’t been able to plan effectively  for it.

Jim ready for his PIB test.

Jim ready for his PIB test.

So, Jim was scanned. He was poked. He was measured. He was tested. And he will continue the tests in August when we return to finish this round of the study. Then we will get some results.

In the meantime, I need to make a MAJOR decision on his driving. I have decided to relieve myself of some of that burden by having him tested by an organization that does such things. It will cost $400, but I suppose it would cost much more in the long run if I didn’t and something happened. I don’t want to make that decision all by myself. And I don’t have $400 to have him tested monthly. I am starting to understand how people lose everything when this disease happens to them. Financially we are just beginning and I can already see where we are headed. And it ain’t pretty.

Jim had a major decline when he lost his job. Then his brother died from Alzheimer’s Disease (the same week) and he had an even bigger decline. Then 3 months later his Dad passed away (from cancer) and there was another decline. I know when I tell him he shouldn’t drive anymore there will be another decline. And our family life will be turned upside down in so many ways. I think all of this will become even more real. For me. And for the kids. I know it is coming. Jim knows it is coming. I am so grateful for his positive attitude and his lack of anger and his natural kindness. Sometimes I wonder if it makes it even harder.

I am so sad. I am so, so sad. I have finally realized through our trip to Bethesda that I have distanced myself from Jim. I have pulled away trying to protect myself. My natural inclination when I am hurting is to pull away; to find other things to concentrate on and to put a wall up. When we were alone for two whole days, focusing not on baseball games or sightseeing, but on Jim and his health, I realized I am scared. I am lonely. I am mad. I am pulling away. I am trying to move forward while being held back and being held back is what is propelling me forward. I think Jim feels the same way. I don’t think he has put a wall up.I don’t think he is capable.  I think he is scared. I think he is sad. So sad. He loves me and he loves Frances and Brad more than anything. He is absolutely besieged with sadness at the thought of losing us…..or us losing him. This whole crappy story is just one sad emotion after another. I can not live like this for years and years. I can not raise my children in this kind of sadness for years and years. I will not break my spirit or my soul to this disease and this utter sadness. I WILL FIND A WAY TO WIN. I will raise money and awareness. I will speak when I am asked to speak. I will write when I can. I will give interviews whenever I am summoned. I will do whatever I can to give the NIH more money; to bring awareness to the masses; to give hope and spirit to those that are fighting the same battle. It is not easy. Honestly, it is sucking me dry sometimes. But I am a very STRONG and DETERMINED woman. I have found my calling. I have found my true purpose on this Earth.

Date night in Bethesda, Maryland.

Date night in Bethesda, Maryland.

We will return to the NIH in August. We will listen to the results. We will keep moving forward. We will cling to each other and we will gather the wagons and fight until the end. It is what we are wired to do. There is no alternative. I am so grateful that there are researchers that literally are working around the clock to help us find a cure. I am not a scientist in any way, shape or form. I wish I was. I cannot contribute that way. What I can do is share our story and help the scientists get funding and get support to continue the long hours they have already dedicated to this cause. I admire and I thank them. I thank you for reading. I thank my parents for listening. And my friends for helping and volunteering. It really does take a village.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (8)

The Ask

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Meeting with Congressman Scott Rigell in April 2012.

I am trying so hard not to become “that person”. That person who only posts things on Facebook about their cause. That person that takes over every conversation discussing the latest research and asking everyone within ear shot to listen. It takes a concerted effort not to drone on and on about the ongoing saga Alzheimer’s is writing with my family. I suppose I get to do that enough with this blog.

There is nothing wrong with being so dedicated to a cause and I certainly understand how easily this can happen to a person. If you have an issue you care about passionately, then you are making contributions to this world and I applaud you. At the same time, I am striving for balance. I am wanting to become that activist and at the same time remain the person I was before A.D. Quite the trick considering there is little in my life that isn’t revolving around Alzheimer’s.

Jim and I on Capitol Hill asking for help from our nation's leaders. April 2013.

Jim and I on Capitol Hill asking for help from our nation’s leaders. April 2013.

Jim and I just returned from our civic duty working the halls of the Capitol in Washington D.C. to beg our elected officials for money. Yes, we know there isn’t any money to be found. Yes we know there is a sequestration going on. Yes we know that many people don’t have jobs (remember, Jim was laid off due to government cuts). But we also know that NOW is the time to find a cure. NOW is the time to change the course of this disease. Money was given for cancer research. Cure. Money was given for AIDS/HIV research. Cure. Money was given for Diabetes, Cardiovascular Disease and Polio. Cure. Cure. Cure.

For several days we were immersed and surrounded by all things Alzheimer’s while attending the Advocacy Forum hosted by the Alzheimer’s Association. Others affected, others fighting the cause, doctor’s doing research, caregivers and care partners. This was a great opportunity to meet fellow members of the “my life has completely changed and turned upside down due to Alzheimer’s Disease” club.

For three days we were submerged in numbers and stats and information. It was enough to make my head explode.

*In the last 30 minutes Alzheimer’s has cost the US over $11 million and 26 more              people have been diagnosed.

*1 in 3 seniors dies with Alzheimer’s or another dementia.

*Alzheimer’s is the only top 10 cause of death without a way to prevent, cure or even slow its progression.

*Of those with Alzheimer’s Disease, an estimated 4 percent are under age 65.

*Alzheimer’s is the most expensive malady in the U.S.

*Our government spends almost $150 BILLION on Medicare and Medicaid for those with Alzheimer’s Disease, but gives less than $480 million for research.

*There is NO cure or treatment for Alzheimer’s Disease.

I could keep going, but I don’t want your head to feel like it will explode too.

Meeting with Senator Mark Warner and his staff April 2012.

Meeting with Senator Mark Warner and his staff April 2012.

 

Then the moment comes where we are sent over to the great land of wheeling and dealing. We are decked out in our purple, with our information in our hands and a great need and desire in our hearts.

 

Asking for help. Asking our elected Senators and Congressman to listen and have empathy and somehow find the funds to make a difference in millions of lives in the US and around the world. When you throw the stats at them, it seems like such a no brainer (again, no pun intended) When you share heartfelt, tear jerking stories, it seems like there is no way they can turn you down. There were almost 1,000 of us from all over the country.

But you realize they have group after group accosting them each and every day with their sad story and their numbers and they too are looking for help and money.

It is going to take a movement of the people to make a change for the people.

The ask: I ask each of you that read this blog, that feel my pain and my heartache and my fears to help. It will only take a few moments of time. AND IT IS FREE TO DO!  It is easy to do. It is your civic duty to let the people who are working for you know how you would like for them to budget and spend your money. Remember at election time when you are told you aren’t allowed to complain if you don’t vote? You aren’t allowed to ponder why there isn’t a cure for Alzheimer’s unless you contact your representative and tell them this is important to you. Share your story. Share my story. Share your friends’ story.

Research is showing that the actual cause of Alzheimer’s Disease  (plaques and tangles building up in the brain) starts about 10 years before symptoms show themselves. In Jim’s family the magic age of obvious symptoms is about 48. That puts the initial start of the disease around 38 in his family. Frances is 12. It takes an average of 12 years and $350 million to get a drug approved and on the shelf. That gives us very little time to actually get a budget passed and money in the right hands to start figuring out a cure. I am scared. I am scared I will take care of Jim and then have a couple of years before I have to start taking care of one of my children. That is why I am on a mission. I am going to be part of the solution. How could I possibly look my children in the eyes if I don’t do something?

  Find out (if you don’t know already) who your representatives are in Washington D.C.

http://www.house.gov/representatives/find/

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Click on the above links to find out how to reach your elected official. Then simply write them an e-mail, a letter or call and leave them a message. Let them know that you, the person that votes, supports additional funding for Alzheimer’s Research. Ask them to Co-sponsor the HOPE for Alzheimer’s Act.

Seriously, this will take you less than 5 or 10 minutes. Then follow up with them a month or so later.

Find out more about the HOPE for Alzheimer’s Act  and find a way to make it even easier to contact your representative.

Thank you.

 

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