Archive for January, 2016

Dropping the Ball….Again.

Brad and Jim working on a puzzle. Jan 2016

Brad and Jim working on a puzzle. Jan 2016

The one part of being submerged in the Alzheimer’s world I never get used to is the amount of time I seem to waste on the phone or searching for answers online.

When Jim was first getting tested and diagnosed, I did research online because the doctor didn’t tell us much other than he had Mild Cognitive Impairment with the probability of advancing to Alzheimer’s Disease. I had no idea what that really meant.

Then when I asked during a follow up visit about support groups and the doctor recommended a group sponsored through his hospital for head trauma victims, I went back online and found The Alzheimer’s Association and their support groups. And I found a new neurologist.

I turned to the internet to read up on the latest treatments and research. Then I stayed up countless nights searching in vain for a clinical trial for Jim to participate in (he was too young and ended up being part of a diagnostic study).

Throughout the years, there have been times where I needed to understand so much more than I felt capable of without any help from a more knowledgeable source. I still feel this way; inadequate and dimwitted.

Filing for Social Security Disability for Jim took hours. Applying for Medicaid took hours. Filling out the Aid and Attendance paperwork, meeting with attorneys, social workers, government and veteran organizations….hours and hours and hours.

This past summer, I spent Jim’s last months at home on the phone probing for answers that never appeared. I made call after call, desperate for help with his care, assistance transporting him back from Connecticut, dealing with the VA, looking for a new home for him and trying to get some answers about what all of our options are (or in reality aren’t).

Now, I find myself back at my desk, searching online and making calls. This time to fulfill Jim’s wish to continue helping find a cure. He wants to donate his brain/body to research when he passes away. Sounds simple enough. I am sure there are many options and I can just tell his doctor and they can set it up. Wrong again.

In order to donate your brain tissue for research, you must be participating in a study before you die. You need to go to that location, have them evaluate you and become enrolled in the research program. If you wait until you can no longer travel, it is too late. The ironic part of this is of course that for many years Jim was too young to participate in trials. Even though he is the perfect research specimen, having no other medical issues other than Younger Onset Alzheimer’s and he was willing and able to participate,  possibly assisting a researcher somewhere to understand something that could change the course of this horrific disease, no one mentioned donation after death. No one asked if he would participate later. No one told me the timeframe and what needed to be done.  I didn’t ask.  And now I have failed him. There are only a limited number of brain banks around the country. Most are not even close to us, which is another problem. Several places would not take him because he is too far away. One study needs another family member to be involved in their program. One study, in New York, needs him to come in person to be evaluated. Maybe if he was having a good day, we had a private plane and the stars aligned just right.… It is so difficult to just accept “not possible” as an answer.

So, I tell you all of this to educate. If you or your loved one wants to donate brain tissue, start working the process now. It is not as simple as making a quick call. I am feeling like I have not fulfilled Jim’s wishes and wasting what his atrophied brain could teach. By not doing this last year, when Jim was capable of traveling and verbalizing his desire to participate, I have let him down and I have let down many others, including our children. Again.failure-is-success-if-we-learn-from-it

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (18)

Call to Action

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Recently, I was honored to be nominated as one of Healthine’s top health blogs of 2015. Whoa. Me? Missing Jim? That is pretty amazing stuff considering all of the informative and well done blogs out there.

As of the moment I am typing this,  Missing Jim is in third place. Which isn’t too shabby. Guess what? The blog in second place is also discussing Alzheimer’s Disease. So currently 2 out of the top 3 blogs are dealing with this Hellish Disease. So, either way, it is a win for us all. I encourage you to take a look at some of the other blogs. There are amazing writers sharing lots of information dealing with a wide range of health topics. If something is ailing you, this is a one stop shop to find some support.

That being said, I need your help. Please click here Healthline Blog Contest and vote for Missing Jim. You can vote once every 24 hours, once through Face Book and once through Twitter. (So technically, you could vote twice a day) The contest ends on January 21. Eight days.

There is even a prize…. $1,000 to the top dog and $500 to the two runner ups. Should I be fortunate enough to place in the top 3, the prize money will go to The Garner Foundationwhich helps dementia caregivers. 

The kids have been keeping track and remind me daily to vote and ask how we are doing. We are a competitive family….

Thank you. I appreciate you taking the time and making the effort to vote. Please share as well. I am sure you have friends who would be willing to vote too.  As always, thank you for your continued support of our family.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have No Comments

Used to be Mine

While listening to this song by Sara Bareilles (I am a musical emotional hostage on many occasions) I realized something: I am scared. Really scared.
Most people who know me would never think of me as a person afraid of anything (except snakes): I am strong. I am outspoken. I am opinionated, I am tough and emotionless. But the reality is:  I am not. Any of these things. I am alone in a big world that can be scary. Sometimes a little terrifying. I found a man who saw me for me and loved me anyway. I found a man songs are recorded about and love stories are written about. He loved me with all of my faults, my weaknesses and my inconsistencies. Despite everything, he loved me. And he still does. And it hurts. It hurts to have had that kind of love, the kind that some never have, that people long for and dream of, and to watch it slip away and realize that it will never be again….it is not just scary, it is crushing. There is nothing I can do to save him therefore saving us. I can’t apologize for something done. I can’t take back something said. There is no “fixing” this. There is no making up or forgiving and working it out.  I am not an easy person to love. I don’t just go along with things. I question. I wonder. I dream. I am passionate to the point of annoyance. And Jim saw this in me and liked it. He liked me and wanted me. He chose me. I chose him. And something else bigger than both of us chose him to leave first. How? How could anyone think he should leave first? He was such a great Dad. And a great husband. And a great man. On all accounts. Jim gave. Jim was good. Jim was kind.

Alzheimer's Disease, frustrations,

Jim and I at the Grand Illumination in Colonial Williamsburg, Dec. 2011.

Jim made this world a better place because he was a hard worker, a giving man, a forgiving person and an accepting human. Just what we all need. And yet he is being put through an unfathomable demise. How cruel. How unfair. How awful for everyone involved.
I no longer know who I am. I question each conversation I have. Sometimes I can’t even recall what I said or who I said it to. I am not just lost; I am not even searching. I used to think I was…searching for something I won’t find and not a clue what I am looking for. I am searching for the man who loved me, who made me ok with me. I know I am supposed to be a woman who doesn’t need a man to love herself or who needs a man for anything and I don’t….but the truth is…Jim completed me. He made me better. He made me like myself. He made me a better mom, a better friend, employee, citizen. A better everything. And without him, who am I? Am I still deserving? Am I still likable? Am I still a good person? He was head and shoulders above me in so many categories and without his companionship and guidance I am on shaky ground. How can I live up to his standards without him showing me the way? His strength and unwavering belief in me is a lot to live up to.The trust he has shown me not only throughout our marriage, but especially as he has succumbed to this disease…unquestionable trust. It is almost suffocating. The decisions I have made on his behalf and his lack of argument are to be commended and should be held in the highest regard. Even while this disease ravages his brain, he trusts me to always do what is in his best interest. Amazingly so.  He brought out the best in me and it is now up to me to find my own strength, my own North Star, my inner GPS system. No one to remind me when I fail that I will be ok and that I will some day succeed. That I am capable. That I am beautiful despite the wrinkles and gray hair. That I am still interesting and wanted.
Without getting angry, without making excuses, without Jim…I move forward. Not at the pace I would normally. Not with the same spirit and drive. Without my partner…without my biggest fan…without the comfort of knowing no matter what mess I have made, no matter how terribly I have failed, I will have someone who still thinks I am awesome and competent. Someone who will wrap his arms around me and make the world disappear………no more. I am alone with my own failings and my trials and tribulations. I can only reach deep to a place I have never thought I could or would have to go and forge ahead. Without Jim’s inspiration and acceptance. Without his smile. Without his wisdom. Without all of the many things he brought to us all through his quiet example. I love you Jim and I miss you so very much. Thank you for being you and allowing me to be your wife for 18 years.

Brad, Jim and Frances. Nov 2015.

Brad, Jim and Frances. Nov 2015.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (11)