Sink or Swim Time

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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)

Fire in the Hole

 

Our group from Virginia meeting with Congressman Scott Rigell

Our group from Virginia meeting with Congressman Scott Rigell

Jim had a great birthday. He turned 52. Hmmm. At one point in my life, that seemed really, really old. Now, it seems young. Not really young, but young. Much too young to have Alzheimer’s Disease.

Sometimes it is almost comical to meet someone new and through the course of the new relationship and conversations explain to them that Jim has this disease. Nearly every single person is taken back. They are a little shocked. You can watch for it, wait about 10 seconds after you tell them and BAMM. You see the complete confusion and then a bit of sympathy and then, if we make them comfortable, calmness and acceptance. All in less than a minute. How I wish our journey through this were so easy to see and work through.

Our visit this past week to D.C. was a quick one. We were able to learn a lot and visit with advocates we have met through the years and re-connect and commiserate together. There are some really awesome and amazing families that are dealing with the same thing Jim and I are, they just don’t have a blog. They have the same pain and suffering and the same desire to help. They have the same needs and the same worries. There are so many of us, it is really scary.

We were able to relax a small bit and we were able to be part of the solution. Jim was awesome. He was full of life and vigor, much more so than I have seen in him in months. It was great to see. I still had to help him with some minor things that last year I didn’t, but overall, I could see his spirits, his demeanor and his thought process had gotten a jolt. He was ALIVE again. Not that he isn’t normally, but in D.C., Jim was witty and chatty and really happy. I loved seeing him this way. He didn’t shave to meet with our elected officials. I didn’t say anything and it didn’t matter. He didn’t put on a tie. It didn’t matter. He couldn’t remember everyone’s name or who we met with or how old he just turned. It didn’t matter. He was still smiling and happy and we had a good time. Again, I was reminded how much more patience I have with him when the kids aren’t around. A few days later I spent 2 days with them without Jim and also had plenty of patience. I somehow need to expand my bubble of patience to deal with all 3 at a time…..a work in progress but one I will not stop striving towards.

Life is so full of challenges. We all face them. Some are much harder than others. Everyone at some point in time faces heartache and pain. It is how we deal with this pain and heartache that will determine the future from that point forward. When the pain and heartbreak are stretched out over years and years, it becomes harder to keep that perspective and stay the course.

While in D.C., we walked the hallowed marble halls of Congress. The first time we walked them I was so nervous I could have thrown up. Ok, not really thrown up, but it was really nerve-wracking. Our first year, I could feel my heartbeat in my chest with sheer nervousness. I was going to be meeting and speaking with someone much more important than me.

This year, my heart skipped beats again, but not from nervousness. I am no longer timid or shy: I have realized that in the 5 years since Jim was diagnosed, there have been no changes in treatments or any new breakthroughs that will stave off this disease. Now when I march down the Halls of Congress my heart beats with determination and I can feel my blood pumping with my resolve to be heard and with the pressure of a time bomb ticking away. When I hear my heels echoing down those spacious hallways, I think of the men and women behind those doors and how they have the power to change the course of my children’s life. They can save Frances and Brad. They can, with one fell swoop of a pen, save my children from falling victim to the same horrendous fate of their Grandmother, Uncle and Father. Now when I walk those expansive halls of Congress, I do so without fear but with shear determination and with no sympathy for excuses. We do not travel all the way there to be given pretexts and put offs. We do not make accommodations so that others will feel comfortable in their ineptness.

There is no more time. The time is now. How can anyone, with any kind of intelligence not see the necessity and urgency? It is written in black and white.

Yes, Jim had a great trip and so I had a great trip. Now we are back to the grind of everyday life.

Thank you to everyone that participated in the forum or contacted their elected official to let them know how important this conversation is. Please keep up the fight and the battle. We are making progress and we will win. We will all keep moving forward until we find a cure.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (4)

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)

Merry Christmas Story Telling

 

You-Are-Not-Alone-In-This-Motivational-Love-QuotesI want to wish each and every person a very Merry Christmas. When I started this blog back in February, I had no clue of the reach I would have around the world. I have been amazed at the response and I have been humbled by the support and words of encouragement. I am inspired daily to keep going and to do more. Sometimes I am not sure I can. Other times I don’t think there is anything that can stop me. As I sit looking at all I have to do in order to be ready for Christmas morning, I would be remiss if I didn’t write a special post to let all of you know how much your love and kindness have meant to me. I get many notes and messages telling me how grateful many readers are that I share our story. But our story is really the story of  many. In the process, stories are shared with me. I cry. I laugh. I get inspired. I would like to take this special time of the year to share some of the very touching e-mails that have been sent to me. My hope in sharing these heart wrenching tales is to help you not feel alone and to help educate those not familiar with the long goodbye process of Alzheimer’s Disease. I am sorry I am not able to share ALL of the notes I have gotten, but since there are well over 200, I will save some for later and  keep this a reasonable length. I thought Christmas would be a wonderful time to share these stories with EVERYONE. For me, the best Christmas present would be a cure for Alzheimer’s Disease. Since that doesn’t seem likely between now and tomorrow, I will settle for lots of help and support getting a cure to come about in the next year. (I am ambitious) Or at least help spreading the word and contacting those that can make a difference; Your Congressmen and women. Please let them know how important it is to keep funding for Alzheimer’s Disease Research in the budget. Let them know you are watching and passionate about this. There is no other way we are going to see this happen. Please help with my Christmas Wish by contacting them. Please visit this page for links and information on contacting your representative. There are no excuses not to do this.

In the meantime, please read some (I will continue to share over the coming months) enlightening and heartbreaking stories:

You have written about my thoughts, concerns, breakdowns, anger, and hope……lessness. My husband was an airline pilot.  Smart.  Funny. After a year of tests, he was finally diagnosed at 55.  I had two children at home, the youngest was 12.  I know you know my story… you wrote about it. We, too, became involved.  Peter (my husband) was chosen to be a member of the National Alzheimer’s Association Advisory Board.  We gave speeches.  We too, walked on Washington and spoke to our Congressmen.  We were featured in ads for the Alzheimer’s Assoc. and in training videos for caregivers.  For the past 5 years our newspaper has been doing an article on Peter which appears on the front page of the Sunday-after-Thanksgiving edition.  They are following him ‘until the end’.  We were asked to appear on FOX news and with Tom Brokaw, and on and on.  It was exciting and we felt we were helping the cause. 

Yesterday, the day I read a portion of your blog, I put Depends on Peter for the first time.  It was long overdue, but I haven’t wanted to take that step. Two things you wrote on that first post I read, jumped out at me and made me realize that perhaps I am not alone in the thoughts that are constantly doing battle in my head. Shortly before Peter was diagnosed, I found out he had been cheating.  I was in the process of figuring out if i wanted to leave (yes, I did) when he was diagnosed.  “My parents raised me to take the high road, not the easy road.”   I stayed.  Then, when our public appearances waned and his life was not as busy,  I found out his “wandering” had continued.  He asked me for a separation “So I don’t have to lie to them (his girlfriends) anymore. “We could not afford two households, and I knew there was no one else who would care for him when things got bad, so I stayed.  I made his meals and washed his clothes while he went to bars and took trips with his girlfriend of the minute.  Since AD no longer afforded him the ability to cover his tracks, the kids found out and told me I should leave him.  My kids!!  But “my parents raised me to take the high road, not the easy road.” So, I stayed. I didn’t want my kids to end up having to take care of him when all the girlfriends figured out what was going on and left.  Which they did. I once again took off his wet and dirtied clothes and once again scrubbed the floor. Then I went and got the Depends .  “This…this…cardboard” he said as I put them on him.  “It will be ok.  This kind doesn’t get wet” I said.

In September, Peter lost his balance, fell head first into the street and suffered (what I believe) was a concussion.  He was taken to the hospital via ambulance as he had a large gash in his head for which he received stitches.  He has not been the same since.  He was in the hospital for over a week, then rehab as he was no longer able to stand nor walk.  After two weeks of rehab and no improvement, insurance refused to pay any longer and he was to be released.  However, they would not release him to my care as he is considered a “two-person assist”.  I was given three days to find a facility that would accept him.  On Oct. 18, he was admitted into a personal care home.  From the moment of the fall he dramatically changed and has not recovered…at all.   He can no longer stand, walk, see (very little), speak (very little and not intelligible), nor feed himself and is completely incontinent.  He only knows who I am on rare occasions and doesn’t recognize our children at all.  He is not aware of his surroundings. Sometimes, though, as I try and make some conversation which he shows no sign of understanding, he begins to cry.   It has been a very difficult few months.  I wish I could say life has become easier, but it has not.  Under the circumstances, I thought I would have a sense of relief, but I do not.  I just find myself on another path of dealing with this disease, completely as unprepared as I found myself on the past paths. 

          -Thank you J for sharing such a personal and intimate look into your new life.

This time of year is really hard for both Henry and me. I don’t know about you but I feel I am doing more and more and Henry is unable to do less and less.  I can’t believe what a decline I have noticed within the past few weeks.  I don’t know if it is because he feels down at this time of year or that his situation is progressing. I am really scared as even though I know what is happening, I don’t want it to happen.  I try to do all the things we used to do together, having to see if there is some kind of happy response.  We went for our Christmas tree and when he was well this was such a happy time, picking the tree, tying in on the car, getting in the house and then starting to decorate it.  This year it was entirely different.  It was like Henry didn’t care one way or another whether the tree is there or not.  It seems that everything I am trying to reinvent of our past is not working and then I become depressed because I have to stop and say listen what is wrong with you, it is never going to be like that again.  Even though I know this, I always have a glimmer of hope that one day all this will go away and he will be like he was 25 years ago.  I miss those times.

Our tradition was on Christmas Eve we would have all my family get together for a big dinner and celebration with my Mom and Dad in addition to all the children, grandchildren, etc.  and Christmas Day, we would celebrate a traditional Hispanic Christmas with Henry’s entire family.  I am trying to keep my Mom and Dad’s tradition of having the entire family over and I have decided do this the past few years because I feel if one of us don’t try to keep our family together, we will be stranded all over the place and sooner or later everyone will be parted from each other.  This year, I am hosting the Christmas Eve tradition again, but in all honesty Karen, my heart is so heavy that I am just going through the motions.  I am scared how Henry is going to be because one moment he can be fine with people and the next moment, he can either be very withdrawn or to the point of becoming angry and being embarrassing as to what he says.   Even though people know the situation, no one really knows what it is like unless they live it on a daily basis.  The different mood swings, the point of being frightened, the crying as to why or what is happening….Even though people say they understand, they really can’t imagine how difficult it is just to keep a somewhat normal daily life.

Henry spends most of his day watching TV.  He is afraid to go outside without me because he is afraid of getting lost even though I have the Medic Alert for him.  He tells me he is happy being with the dog until I come home from work.  I don’t know if this is such a good idea and have tried even with the Doctor’s help but no accomplishments.

-Thank you Denise for opening up to me and for your very kind words.

My husband was diagnosed in February of this year with Early Onset Alzheimer’s at the age of 56.

He retired as an Alabama State Trooper in July 2010, due to what we were told after a hospital stay was stress and anxiety. He started being treated for stress in 2007. He began misplacing things all of the time. He always thought we were moving his keys, watch, wallet, you name it. He was a bomb technician, firearms instructor, Swat team specialist and also a contract employee for Homeland Defense as an instructor, in EOD and Haz-mat. He was very educated and was a highly respected law enforcement officer for over 33 years. He started having problems with money and numbers in 2010, which increased his stress levels. He was taken to the hospital, for what they thought was a heart attack and after a battery of tests, the doctor said it was stress and he needed to retire. So we did. He worked part time at a friend’s gun shop, only to become agitated on a daily basis. He had problems completing the background paperwork for gun purchases, also with making change, etc. We went to our family doctor several times in 2011 and in 2012 he had a brain scan done and he told us it was stress causing mild cognitive impairment. He scored 23 on the mini mental evaluation in his office. He changed his medication once again and told us to reduce stress as much as possible. There were so many times I just wanted to leave, but I loved him with all my heart and couldn’t do that to our children as well. It scares me the thought ever went through my mind. We have three sons all living at home. Our youngest is 13, our middle son will be 21 in January and just graduated the police academy and our oldest is 22 and is in his 4th year in college.

We went back again in August of 2012, he repeated the mini mental evaluation and he scored 21. Two weeks before our appointment for the neuropsychologist testing, we found out our insurance didn’t cover mental health, so our portion of the bill was $950.00, due at the time of the visit. We didn’t have the money, so I called and asked for a referral to a neurologist and we were able to get an appointment in a little over a week. When they started asking him they day, the month, year, who was governor, what county he was in, the list goes on and he couldn’t answer most of the questions. I was in a state of shock. They did an EEG and it showed slowed brain activity, they started him on Aricept and he referred us to UAB and we were able to see the Director of Neurology. He is the most amazing doctor I’ve ever met. He scored in the low teens in the mental evaluations. He ordered a PET scan, but our insurance wouldn’t cover it, so he had a SPECT scan done instead. The doctor said it was basically an older version of the PET scan. He called me the evening after the scan at home. We had been home about three hours and he told me John had Alzheimer’s. He said he was pretty sure that’s what it was, but wanted to scan to confirm everything. He said he could not drive any longer and told me to apply for social security disability benefits. He is in the moderate stage of Alzheimer’s and he is too far advanced for any of the clinical trials. I cried after speaking with the doctor. How do you tell someone this kind of news? I knew something was very wrong for a long time, but was misdiagnosed for several years. I never in a million years would have dreamed this would happen to us at such a young age. I am 45 and John is 57.  Your blog reminds me of the overwhelming stress, the grieving for what’s been lost and what is ahead in the future. Bringing home the groceries and not getting any help because he doesn’t pay attention that I’m carrying in six bags at once. I don’t have to tell you, because you are living it too.

– Thank you Kimberly. You speak for so many.

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

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)