Archive for March, 2014

Ride Rona, Ride

Rona and Jim throwing out the first pitch of the Peninsula Pilots ball game, Aug. 2013.

Rona and Jim throwing out the first pitch of the Peninsula Pilots ball game, Aug. 2013.

This world is full of amazing people. I am thankful each and every day when I am blessed to be associated with such incredible people. I love hearing their stories and learning new things from their escapades. I also get inspired and pushed forward and lifted up. There is one such lady who is just simply remarkable.

Her name is Rona Altschuler. She is the Alzheimer’s Association Southeastern Virginia Peninsula Walk Chair. She is also a new friend of mine. She is a wife and a sister. She is a mother. She is a dental hygienist. She is also a daughter who lost her mother to Alzheimer’s Disease. Rona was already the walk chair BEFORE her Mom was diagnosed. Before her life was touched so personally and tragically by this nightmare. She is a ball of energy and a really GOOD person. I know. She has shown me in numerous ways. Right now, she is showing all of us her ardor, devotion and willingness to put her body where her mouth is. Rona is BIKING across our great country. That is right: BIKING. She flew from Virginia to San Diego and along with a small group of women, she is riding her bicycle from California to St. Augustine, Florida.

For two months she is putting her body to the test. She is missing work. Missing friends. Missing her husband. Missing walk preparations. Missing life back home. Missing her son. Think of all of the “normal” life things you would do over a two month period. Now think of completely pulling yourself out of the picture. All of the planning and preparation that would have to take place.  Not to mention the physical training and mental preparedness.

She is writing a blog to keep everyone apprised of her journey; http://ronasride.wordpress.com.   I hope you will read her words and also be inspired by her selflessness and dedication.

Please take a moment to read about her amazing strength and send her some words of encouragement. Let her know how thankful you are that she is willing to put her life on hold so that others won’t have to.

The main reason Rona decided to do this ride across so many miles is to spread awareness along the way about Alzheimer’s Disease. Every stop they make, she meets locals and tells them why she is riding and about the need for more help. She is also doing this to raise money. So, if you can, please donate; http://ronasride.wordpress.com/please-donate/  Even if it is only $5. Imagine how much your small (or large) donation will help her as she pedals along through Texas and Mississippi. Imagine the courage and determination this takes. With a click of the button and the sacrifice of a latte you can tell her “thank you.” Rona is paying for her trip with her own funds. 100% of what is donated goes directly to the Alzheimer’s Association.

I am so proud to call Rona a friend and so lucky she is fighting on the same team. Thank you Rona!!! God Speed and enjoy the ride!

 

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

Please Read and Share

http:/Dementia
Source: MBA-Healthcare-Management.com

posted by Karen in Uncategorized and have Comment (1)

Car for sale

 

Karen and Jim, June 2012.

Karen and Jim, June 2012.

Jim isn’t driving anymore.

It wasn’t his decision. It was mine. Even though we have known this day was coming for years, it doesn’t necessarily make it an easy decision. Maybe I could have waited another week, a month or longer. Who knows?

I am tired of being in charge all the time. I really don’t like making such tough judgment calls.  I just took away Jim’s independence. I took away someone to help trudge the kids around. I took away something that Jim has been doing since he was 16. I took away his ability to grab the keys, hop in the car and drive to the store, the park, or across country (which we have done a couple of times).

In true Jim fashion, he is taking this all in stride. He doesn’t complain, argue or get upset. He trusts that I am making choices based on what is best for our family. How do I know what is best for our family? Sometimes I feel like I am 10 again and searching for my own path in life. I don’t feel old enough or smart enough or knowledgeable enough to be the one making life altering decisions for anyone. I suppose I took on that role the day I brought a child into this world, but somehow, I am still not sure I am the right person for the job.

Jim on the other hand has always been so sure of himself and knowledgeable about so many things. I relied on his input all the time. I realize now more and more how much I did rely on him. For so many things.

When it was time to discuss him not driving anymore, he just said, “OK.” That was it.

The next day, I brought it up again to find out if he remembered and to make sure he was really all right with this new way of life. He told me he thought he could still drive close to home. I told him he was right, he probably could. We hadn’t had any instances for concern other than his increasing decline in short term memory loss, inability to multitask or ability to make decisions. All things that are needed in driving.  Well, there was the time he sideswiped a trash can in the neighborhood which knocked off his passenger side rearview mirror. But in all honesty, the trash cans on our streets are sometimes really far out in the road. And not too long ago he got a ticket for running a red light. We got the ticket in the mail. It had pictures. I was dumbfounded. Jim DOESN’T speed or run stop signs or red lights. That was the very first ticket EVER for Jim. Of any kind.

I told Jim,”I would rather take the car keys a day too soon than a day too late.” And he concurred. I would never forgive myself if something happened to him or someone else because I was being selfish and not wanting to make a hard stand. Or give up his help with the transportation.

I am very, very grateful for Jim’s fantastic attitude. I know many others have to deal with all of the same issues I do, but on top of it they have to deal with their loved ones’ denial, anger and arguments. There are many, many facets to this disease. It is so much more than grandpa forgetting a name or losing a set of keys.

Decisions are anguished over. Lives are changed. Friends are called upon to change their daily routines and to volunteer to help. Dynamics of families are forever upended.

I sometimes feel that it is like being handed a life sentence in Hell. There is no hope of reversing the sentence or getting out early for parole or good behavior. You are locked up and the key is thrown away. It really just isn’t fair. I sometimes look at Jim and feel sorry for him. Especially when I think back to his love of life, his joy in his family, his love of travel and adventure. Alzheimer’s Disease is slowly robbing him of himself and robbing the world of a fantastic guy.

Since we made the decision a few weeks ago for Jim to stop driving, he has automatically volunteered to drive the kids somewhere or go to the store for me. I have gently had to remind him that he isn’t driving anymore. He seems resigned to the fact and is thankfully an amazing Alzheimer’s patient. I am learning that I have to plan further ahead and ask for more help. Neither of which are easy for me. I am learning as I go.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (12)

Pain with a side of happiness

Screen Shot 2014-03-15 at 10.39.05 PM

Part of our journey with Alzheimer’s Disease is accepting help. Damn, it is hard. Help with not just financial things, but emotional needs and just relying on my friends to help me with the most mundane decisions. Decisions that I once had a partner 24/7 to throw things at and see what stuck and what didn’t. Decisions I could do blindfolded with one arm tied behind my back while falling asleep. Now, just something as simple as what to fix for dinner or which load of laundry to start next can be ginormous.

I really miss having that partner; someone that knows my history, my family, my friends, my desires and my dreams. Actually, not MY desires and dreams, OUR desires and dreams. Someone that has the same goals in life and we would work on figuring out how to make our family decisions based on reaching our goals together. Together. Now, I often feel alone and my goals have changed immensely. New goals that are intertwined with something out of my control and right now beyond my reach. They are more confounding short term and much more solitary long term.

I just returned from a very enjoyable trip to San Diego. I LOVE San Diego and Southern California. I was able to go because I was asked to speak at the American Society on Aging 2014 Aging in America Conference. I first got to visit with a very dear friend of mine, Jen. We met almost 20 years ago while we both were living in Las Vegas. She has 3 beautiful daughters and a great husband. They now own Serious Cycling,  a fabulous bicycle shop and graciously gave me a tour. Somehow, we had managed to let over 7 years pass without seeing each other. Thanks to this opportunity to visit in the area, we were able to have a quick but very satisfying visit. I had forgotten how much we had shared through the years. I had forgotten how much Jim and I had enjoyed our visits with them. But over the course of a few hours, wonderful memories came flooding back and they were so bittersweet. I had forgotten our camping trip to San Onofre Beach (Jen is the one who took the picture of Jim and me on the beach that is on the Missing Jim Facebook page) While we were chatting, her husband mentioned what a fun trip that was. Bam! It felt like I was hit in the gut. Yes, it was a great trip. WE had been a fun couple. WE had plans to have more fun trips. WE wanted to do that again someday. In an instant, I was elated that someone had thought doing a camping trip with us was a fun event and so stricken with sadness that it would be wasted breathe to suggest doing it again.

Jen and I together again! March 2014

Jen and I together again! March 2014

While Jen helped her daughters with homework, I sat outside on the back porch swing, (after laying on her luscious green grass) enjoying the Southern California Sunshine and warm gentle breezes while gazing at their pool. The pool that Jim played with the kids so much in during our numerous visits. The adorable play house that we had decided Jim should try to replicate back at our home. The ping pong table where they had first taught us to play Beer Pong (long before it became a fad) The Jacuzzi we had sat in for hours, enjoying the stars, the friendship, great conversations and thinking that our lives were perfect and would be that way forever.  I sat in that swing and for the first time in a very long time had an opportunity to really reminisce about our life: years ago. Not our life now or our life in recent memory. It had been so long since we had been there that these memories are not part of any thoughts of Alzheimer’s Disease. When Jim and I were visiting Southern California and enjoying ourselves, Alzheimer’s Disease was not in our regular vocabulary or on our radar. I have been so caught up and focused in our day to day life and trying to figure out our future, I hadn’t really thought about our past, our FUN past.

I believe that no matter what struggles you face in life, you get overwhelmed and downtrodden with burdens and it becomes nearly impossible to see a silver lining. It is impossible to remember happier times while remaining in your stagnant environment. It is invariably unfeasible to see a brighter future while enduring constant darkness and pain. It is a struggle, but during this thing called life, we all must keep pushing forward while keeping close the wonderful memories we have to sustain us thus far.

So it was because of Jim’s misfortune that I was lucky enough to visit my friend and get a respite from my current world with Jim. The irony is suffocating.

There have been many instances where my life has been filled with wonderful, enlightening gifts recently due to our circumstances. There is no question that I would rather have Jim back to his old healthy and happy self,  but if we must endure the pain and agony, at least we also have bits of sunshine and comfort along the way.

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)

Thank you Mom and Dad

My Mom and Dad with me after I finished my first 1/2 marathon in San Francisco. They drove from NC to SF to be there for me. Oct 2009.

My Mom and Dad with me after I finished my first 1/2 marathon in San Francisco. They drove from NC to SF to be there for me. Oct 2009.

I am so blessed. Even while going through the most difficult time in my life, I cannot help but feel a tremendous sense of indelible love and support. I have friends that seem to rally to my rescue when needed. Sometimes when I am not even aware that it is needed. I have two children that show me true and unconditional love. They forgive me for all of my faults as a Mom, a Wife and a Caretaker. And I have my parents. I realize that at the age of 44, I am fortunate to still have both of my parents with me. I am doubly fortunate to have both of my parents not only a few hours away, but of the mindset they will do whatever they can to help me, the kids and Jim out. They will re-arrange their schedule, they will listen, they will cry, they will listen, they will read about this horrific disease to understand better, they will offer guidance, they will come to help out and they will listen some more.

I am headed out early in the morning to be part of the Annual Conference of the American Society on Aging in San Diego. I was asked to participate as a Younger Onset Alzheimer’s caretaker. I will be speaking out for all of us going through this yucky mess and letting others know what we need to keep our heads not just above water, but our whole body as well. I take this very seriously and I realize that I have a lot of families to speak out for and a lot of different stories to meld together. I will do my best for everyone that is needing their voices heard.

But I wouldn’t be able to leave my home, my kids and Jim without knowing they would all be ok. Along comes my Mom and Dad to the rescue. As soon as I asked them if they could come help out so I could go to the conference, there was no hesitation. “Yes. We would be more than happy to watch the kids.” One less thing for me to worry about.

I know I will not have them both with me forever. It crushes me to think about the day when I will have to tell them “goodbye”. I don’t know if I can. Not anytime soon. I rely on them so much for support. Who else REALLY wants to hear every last detail about my kids? Who else REALLY wants to hear over and over again about my unfolding tragedy?  Dealing with Alzheimer’s Disease, I hear so many stories and heartbreak from children taking care of and losing their parents. When I put myself in those shoes,  tears spring up and I am again immensely grateful that I can pick up the phone and speak to my Mom and Dad. There is an acute awareness that each day I grow older so do they.

Our relationship wasn’t always so close or so good. We were close until I was about 12 or 13 and then we became close again in my mid twenties. I regret those years in between. We all must grow and learn but why must we always hurt our parents and lose precious time with them in the process? We still don’t always see eye to eye 100% of the time. I know they bite their tongues and I am sure there are plenty of discussions about what I should or shouldn’t do or have done.  But there is an underlying rule of always being there for each other and making sure we  know how much we are loved and cared about.

When people tell me now how strong I am or how brave I am or how great it is that I share our story, I hope they know they are really complimenting my parents. There is absolutely no way I would even be close to the person I am today without them. I am able to write this blog, advocate, speak out and move forward only because I have my two biggest fans quietly pushing me from behind. Just as they have done my whole life.

Yes, I am so very, very blessed.

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

Living in the NOW

Thank you Patti Brown Photography for this wonderful family photo, 2008.

Thank you Patti Brown Photography for this wonderful family photo, 2008.

I am listening to the kids upstairs. Frances is reading a book to Brad. This is a rare occasion. It warms my heart and soul. I feel a peace I haven’t felt in a long time. Like everything is going to be ok. Is it? Will our lives ever be “ok” again?

It has dawned on me quite loudly in recent weeks that I am actually starting to accept what is happening. And as I do so, I accept Jim and who he is now vs. who he was. I also feel a sense of mourning. Each day it seems I mourn a part of him that is no longer.

I mourn his help as a father.

I mourn his beautiful handwriting that is slowly becoming intelligible.

I mourn our discussions, our communication, our ability to make decisions and co-parent.

I mourn his ability to be my Mr. Fix-it.

I mourn his interest in movies, books, music and the news.

I mourn his interest in the kids’ lives and my life.

I mourn our marriage.

I mourn our family.

I mourn his voice; his ability to speak clearly and with purpose.

I mourn our previous life.

I mourn my partner in just about everything.

Each and every moment of every day. I mourn.

 

At the same time, I am learning (not as fast as I probably should) to accept who he is NOW.

I am being forced to live in the present and only the present. I can’t think of the past. It is much too painful.  I am not at the point where my memories with Jim bring me smiles and warmth. They bring tears and heartache.

I cannot dream of a future; it is too unknown and too full of anguish, fear and loneliness.  All I can see is who Jim is becoming and the fact I am helpless to stop his progression.

Years ago I tried to read the very popular book, The Power of Now.  It just wasn’t in my personality. I naturally envision my future, our future and what we are going to do.  I treasure my past. My friends. My travels. My fun and my heartache. It is all part of what has shaped me into me. It has taught me my life lessons and given me the ability to grow into a woman that can take care of a husband, a family, a home and work full time.  It reminds me of why I married Jim, how we were, how we thought we were going to be. It is a sick cycle. It sucks you in unexpectedly and in a moment you are riddled with pain and a sadness that you can’t remove.

There is no “moving on”. Jim is very much alive and present. We are still in the early stages of this disease. I am very aware of the fact he will be declining and things will become even more difficult. I should cherish THESE times. But at the same time, he is not Jim. He is not the Dad he was or capable of being. He is not the husband. He is not the neighbor. He could no longer be PTA vice-president as he was just a few years ago. He could no longer have a top-secret clearance job as he did just a few years ago. He can no longer get our clothes separated into the right piles; Brad may get my socks and Frances may get his t-shirts. He no longer can remember the exact shelf or drawer to put a bowl or utensil away. He confuses the dishtowels with the washcloths.

No, I can’t live in the past. I can’t dream of our future.  Living in the present may be my only option but I am not sure it is an option I am happy with.  I don’t know at this point in time what would make me happy. Truly happy. How can I be happy when I have a husband that has a disease that has no cure?

I find happiness in the little things. Like listening to our children play together and read together. I find happiness in helping others. I find happiness in making a difference to others. It is the only way.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (12)

Dear Mr. President…

TJ_Quote-01

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

Dear Mr. President,

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

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

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

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

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

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

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

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

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

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

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

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

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

Sincerely,

Karen H. Garner

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