Sink or Swim Time

774e038bb1a7ad50d042ea68c538bf2a

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

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

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

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

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

The Purple Brigade are Coming to Town

 

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

Jim and I at the Capitol, April 2013.

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

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

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

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

Jim, April 2013.

Jim, April 2013.

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

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

So, off to D.C. we go.

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

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

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

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

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

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

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

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

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

Funding Anyone?

Alzheimer's funding, alzheimer's disease

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

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

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

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

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

They are all worthy causes.

alzheimer's disease, funding for research

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

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

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

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

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

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

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

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

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

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

Imagine

alzheimer's help

Please try to imagine something for a few minutes. Imagine you are not quite middle age, with fairly young kids starting to get involved in lots of activities. You have a fairly good social life, with a tiny bit of disposable income. Your marriage has weathered plenty of storms and the two of you have decided to stick around for the long haul while working on re-connecting. You are just cruising through life with your own fabricated worries each day. You work part time because you want to be able to take care of the kids when they are out of school. Your husband works full time and travels quite a bit so you get some time by yourself as well as time together.

Now imagine that your spouse starts saying really strange stuff. Not all the time. But just enough to be really annoying and become increasingly worrisome to the point he starts going to doctors and getting lots of tests. The two of you start therapy to no avail.

Now picture sitting across from a doctor, in uncomfortable chairs not really sure if you should be holding hands or taking notes. You hear words that you aren’t familiar with but are being said in a way you know means something is bad. Really bad. You want to cry, but your body has decided a form of shock is more productive than tears. You ride home together without really acknowledging what just happened. You search your mind for something positive to say. You want to revert to the old standard,” We will do some research and find a cure. We will beat this.” But you just heard things like, ”no cure” “no current treatments or course of action” and “start looking into power of attorney paperwork”. The two of you get home in time to pick the kids up from school and start the normal routine of life. But you have this new underlying thing ticking away inside of you. You know that you need to talk. You know that you need to plan. You know that you should be falling apart at this very moment, but instead you are planning dinner and checking homework. You stare blankly out the window in front of you, above the sink, cleaning chicken as your 5 year old is singing. Something about wheels on buses. You don’t really acknowledge any jokes or smile. The kids don’t understand. But you can’t tell them. You can’t burden them with your new secret. And you certainly don’t want to finally open the floodgates in front of them.

All of a sudden, your whole world has been turned upside down. Or you know it will be. Right now, everything seems pretty status quo. Nothing has really changed a whole lot. That will come in minuscule increments over the coming years.

Imagine waking up the next morning and each morning for the next 4 years,and as you slowly come out of the fuzziness of slumber, you have a flash run through your mind. The doctor. The words. The emptiness that is growing inside of your chest becomes larger and common. You heart aches and breaks each day as you helplessly watch your husband morph into someone you don’t recognize and don’t know. Can you feel the pain of holding them as they cry? Can you see the scared look in their eyes?

Can you picture the tears that start to fall when you least expect it? Now when you go to the Hallmark store to purchase a card, the words printed on the card seem like ironic, bitter wounds that are so painful you can’t even grasp not feeling the pain. Aren’t there any cards that don’t have something about “forever”  “grow old together” or “dreaming of the years ahead”?

The kids start to notice things. You finally must tell them. You aren’t sure what words you should use to spare them pain but at the same time provide knowledge and understanding. You start to worry. About everything. Ruining the children and their childhood. Finances. Relationships. Your home. Finding a job. Long term care planning. Research trials. Wills. Directives. Then one day it hits you so hard, so fast and so thoroughly you are not sure that you can move, breathe or think; this disease that has no cure runs in his family. The kids. More research, more questions and a mountain of worry fill your world.

How would you feel if you were no longer in the position to dream of a better life? What would you work hard for and plan for if you thought it was hopeless? Can you put yourself at a social gathering, trying to explain to friends that don’t understand, don’t see what you see and who suddenly seem a million miles away? Can you feel the heartache and the excruciating loneliness that starts to seep into your core? Do you really care anymore about anything? Are you able to see outside of your own world of pain and hurt and anger and isolation to remain a stable, sane part of society?

Eventually you are trying to navigate the very arduous social security disability tightrope, which is like having to deal with the DMV but with 100 times more paperwork, follow up and waiting. And when you finally hear back from them, it isn’t because you are done, it is because they need more paperwork and have more questions.  By this time your body is in perpetual slow motion and your brain is constantly feeling as if it is in overload and trying to shutdown. You wake up only when you have to. Suddenly you are working full time while your husband stays home. You quickly realize that your life before had been pretty damn good. Those days of volunteering at the kids’ school are gone. No more jogs or walks during the day. No more TIME to clean the house. Can you see yourself flipped upside down and shaken to the core while trying to work, manage a home and make every single decision in your family’s realm?

What would you do to pull yourself out of your fog? How would you smile and laugh and dream and feel love if you always had thoughts of death and disease running through your mind? How long could you live, knowing your future was going to entail watching your spouse simply forget who you are, who your children are and how to care for himself? But you don’t know how long the process will be. You could endure this for a couple of years or maybe 20 years. You think to yourself; I will be a widow when I am 53. But only after a very long road of watching him suffer and simply stop being himself and having to take care of him. Then I might have to take care of the kids. The nightmare doesn’t seem to have an ending.

You stop returning calls or attending parties. You can’t find words to put together to make a sentence that anyone would want to hear. Imagine going through the motions of life and feeling it is a waste of time to plan for anything past the next 5 minutes.

Now, feel the strength from within you finally breaking through, like a baby chick pecking out of its’ shell to begin life. It must search slowly, looking for the right place to start and eventually jabbing faster and harder and stronger until it can break free and see the light and the world around it. You are only able to do this with invisible arms reaching through to help wrench you out of the sticky mess while you are being pulled back into the darkness. The arms that surround you are family and friends who do not let you stay sucked away in your own misery and depression. The hands grab you: lovingly and forcefully tugging you towards something that has reason and meaning and life.

You have a mission. A cause. A purpose. You had never known you could do this. But you must. There is no other way to keep moving forward. You must be part of the solution, not part of the problem. It is the only thing that will allow you to find happiness, purpose and self worth again.

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)

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)

Please save me some….

choices

Jim eats. A lot. He usually eats enough for 2 or 3 people at a sitting. There is seldom any leftovers in our home. Which is fine by me. I am not a big leftover kind of person anyway.

But sometimes the “leftovers” are my dinner.

A couple of days ago Brad had baseball practice. Frances had a violin lesson. So, Jim took her and I took him. Before I left for baseball practice, I cooked some chicken for dinner. Then I left a note for Jim and Frances on heating up the pasta and veggies.

There would be enough for Brad and I to eat when we got home. Needless to say, when we rolled into the kitchen at 8:30, hungry and tired, there was no pasta left. Thankfully I had fixed a lot of chicken, so we had that to eat, but nothing to go with it. The vegetables were gone too. As was the orange I had peeled for Brad before we left that he didn’t eat.  I was going to teach him a lesson and make him eat it when we got home.

As I heated up some chicken and peeled another orange, tears stung my eyes.  Why? Why should I care? There was still chicken to eat….

I cried because this is another example of Jim not being able to be Jim. Of him not being able to be the father I know he is. Because I was tired after working all day. I was tired from rushing to cook dinner, rushing to ball practice, making sure I had laundry started, thinking I needed to call Verizon again for the 3rd month in a row because they were still overcharging us (which is itself enough to make me want to scream) and I still had some work to do later that night. I was physically tired and mentally exhausted. It had been a calming, nice feeling to think on the way home that I didn’t have to worry about our dinner. It was waiting for us….

Jim not being able to understand that Brad and I still needed to eat and he should leave us something was a breaking point.  Jim not being able to help with any of the tasks I had yet to do that evening was seeping into my mind and bringing out a bitterness I work hard to keep tucked far away. Sometimes those ungrateful demons start escaping.

Having time away from the moment and the situation allows me to look back and realize I need to just put things in perspective and be thankful we have food to eat. Be thankful Jim is able to take Frances to violin. Be thankful he is able to eat on his own. Expecting to be able to simply heat up a plate of food versus finding out half the plate was eaten long ago takes a moment to sink in. Sometimes I need those moments to come quickly and leave swiftly to allow me space to reflect and be grateful instead of spiteful.  But life happens in split seconds and there is no slowing down real time and there is no taking back words or feelings or thoughts of despair.

Hurt. Even though I know this disease is ravaging Jim’s mind and taking the real Jim away from me, it doesn’t stop some things from hurting. It hurts when your spouse no longer thinks you will need to eat when you get home. It hurts when the kids tell him they love him and he shows little reaction. It hurts when something wonderful happens in our life and he no longer gets excited. It hurts when he doesn’t seem to care how we are paying the bills. It hurts even more to look at him and wonder if he still gets it? Does he understand the turmoil and angst that shrouds our home at times?

It hurts to want desperately to be held and shown love and instead, to feel alone and exiled.

I am grateful for two healthy children. I am grateful for a home and food to eat. I am grateful I have a job. I am grateful for my friends and my family. I am not grateful this disease has come into our lives and given me those things that I will have to one day look back on as “blessings in disguise”. I am not grateful to become an advocate for such a horrid disease. I am not grateful that I am able but necessitated to make all the decisions in our lives. I haven’t gotten there yet. I haven’t gotten to the look back point where what I see is a piece of life to smile about and be grateful for.  Life is a hard road to travel, but someone has gotta do it. Might as well be me.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

A New Treatment…

Jim getting fitted for his "helmet" to use in the hyperbaric chamber. Aug. 2013

Jim getting fitted for his “helmet” to use in the hyperbaric chamber. Aug. 2013

Last week Jim started a new treatment. Hyperbaric Oxygen Therapy.

To explain it best, I have copied a description from the Mayo Clinic website:

Hyperbaric oxygen therapy involves breathing pure oxygen in a pressurized room. Hyperbaric oxygen therapy is a well-established treatment for decompression sickness, a hazard of scuba diving. Other conditions treated with hyperbaric oxygen therapy include serious infections, bubbles of air in your blood vessels, and wounds that won’t heal as a result of diabetes or radiation injury.

In a hyperbaric oxygen therapy room, the air pressure is raised up to three times higher than normal air pressure. Under these conditions, your lungs can gather up to three times more oxygen than would be possible breathing pure oxygen at normal air pressure.

Your blood carries this oxygen throughout your body, stimulating the release of substances called growth factors and stem cells, which promote healing.

Jim during the treatment session.

Jim during the treatment session.

 There is no real “proof” anywhere that this treatment will heal Jim of his Alzheimer’s.  But, we have been fortunate that a local healing center, Renova Wellness, heard our story and asked us if we would like to try a new approach. What do we have to lose? As we have been told by every doctor, every article, every news story and by every bit of research we have done, there is NO CURE.
So, Jim has agreed wholeheartedly to try this. He will have to go everyday for long periods of time. Each session is 90 minutes and they suggest starting with 20 days, take a week off, then another 20 days. They have had some patients with dementia that have recovered enough to stop asking the same questions over and over and have stopped repeating themselves. We have not been promised a cure. We have not been told that Jim will go back to his old self. But, we are hoping that these treatments will help stave off the disease, give us more time together as a family and possibly help with his short term memory that seems to be failing more often than not.

The Hyperbaric Chamber.

The Hyperbaric Chamber.

It is really sad how desperate and willing to grasp at anything that gives the slightest hope of some sort of reprieve from the steady decline a family can be. Like so many, we are that desperate. We want Jim to have time with the kids. We want them to have time with him; while he is still him.
I remember quite clearly going through all of the testing when we were first trying to figure out what exactly was wrong with Jim. It got to the point where I was disappointed it wasn’t a stroke, a brain tumor, depression or one of the myriad of things we eventually ruled out. All of those have either a treatment, a definitive diagnosis, a game plan of what to do and very seldom result in a possible 10 year decline of all mental skills associated with being a Dad, a friend, a lover, a husband, or a functioning member of society. Please do not misunderstand me, I do not think having a stroke or brain tumor is a cake walk. I am just relating how desperate and warped your views and desires can become as you slowly start to understand the daunting undertaking you and your family are about to begin.
Jim is still on his medication. He is still exercising. He has stopped reading. I am thinking I should try to find some short stories. Long novels are difficult and he was having to take notes so he could remember what he had read. He just finished his follow up testing at the NIH for the diagnostic study. We are participating in our Walk to End Alzheimer’s. We are gearing up for our family vacation next week….FAMILY CAMP. We are ALL very excited. We go the same week every year….
So for the most part, Jim is still Jim. Except when he isn’t. While we were at the NIH, we ate lunch in their cafeteria. I was in line for pizza and he went over to get a sandwich. I was watching to make sure he found his way and he seemed fine. When I walked over and stood with him as he waited, one of the ladies behind the counter asked him if he would like something. He said he would like a Reuben. The second lady behind the counter looked up and said, “I already helped him.”
Jim replied,”No, I haven’t ordered yet.” She argued back she had helped him. He had already ordered. I asked him if he had ordered a sandwich but just hadn’t gotten it yet. He was adamant he hadn’t been helped yet, but at the same time, I could tell he was a little confused and off.
Sure enough, she pulled his Reuben out of the oven and wrapped it up for him. There were no words said by either of us. I didn’t know what to say, since my heart was again breaking and I was no longer hungry. I have no idea what he was thinking….he almost didn’t seem to really understand and realize what happened. But I wasn’t mad or frustrated with him. It is becoming our new normal.
So, if the hyperbaric chamber can help Jim remember what he has ordered, I’ll take it.  If it will help him recall what positions the kids played in their games and if they got hits and runs and outs, I will take it. If breathing in some pure oxygen will give me a little more time with him, I will take it.
Jim and I were able to enjoy a nice lunch in Bethesda, MD after finishing up at the NIH.

Jim and I were able to enjoy a nice lunch in Bethesda, MD after finishing up at the NIH.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

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)