Doctor Day Sucks!

Jim and I. Dec 2014.

Jim and I. Dec 2014.

Today was DOCTOR DAY. I think in general we usually look forward to going to the doctor, even subconsciously, to get healed. Healed from whatever is ailing us. Healed from something we may not even know is wrong. Healed from things that hurt a little and things that hurt a lot. Eventually, with the help of the almighty physician, we are healed. Unless we have something that they just can’t heal. ALS. Huntington’s Disease. Lots of types of cancers. Alzheimer’s Disease.

Today, I saw the pain of not being able to help us on Jim’s doctors’ face. And in his words.

To start with, they called Jim back without me to do the mental exam. I knew it would be lower than the last visit nine months ago, but I didn’t realize quite how low. When they called me back, I could tell the nurse, who we always see, was a tad “different”. I knew that she had seen the difference in Jim. I knew it was bothering her.

When the doctor came in, he was his usual pleasant self, but when we got down to business, he fumbled over his words. He was struggling, because as a physician you are trained to heal. You are trained to find out what is wrong and to fix it. He can’t fix what is wrong with Jim. Jim went down 6 points on the memory exam. I looked at the drawing of the clock which is always part of the exam and I saw there were no hands and the numbers were wrong. My heart sank. Even though I know he is declining, seeing it in black and white is hard. Hard. For ALL of us.

When I entered the room and it was just Jim and I, he started to cry. He knew. He knew he hadn’t done well on the test. He isn’t far enough gone to be completely oblivious. This is so painful to watch. This wonderful man, crying and realizing what is happening to him and not being able to do one single thing to make it better. He told me he wanted to move away. I asked him why. “So the kids don’t have to see me like this. I don’t want them to see me the way I am going to be.” It took every ounce of self control not to burst into tears with him. I saved that for later.

I recently went for a walk with a friend. During our hike, we discussed Jim and lots of different sides of being his caregiver. Part of the conversation went like this:

Me: I don’t really feel sorry for myself. I think sometimes I come pretty close, but for the most part, I don’t think I am.

My friend: Really? I thought from reading your blog that you were pretty sad most of the time.

(At this point I was a little surprised since I didn’t know she was keeping up with this blog)

Me: Not really. Yeah, I get sad, but I can’t stay that way all the time. It would be awful for Jim and for the kids.

My friend: You don’t feel like you feel sorry for yourself?

Me: No. I feel sorry for Jim. I look at him and I just really feel sorry for him. And I think about the kids not having him for a dad. He was such a great dad and they won’t remember all the awesome things he did with them and for them. I am a much worse parent and it’s actually sorta sad that he is the one leaving them and not me. He would be more patient and teach them so much more. I get really sad thinking that they won’t have him around and they will watch him decline more and more and it is taking over their whole childhood.

My friend: You are a great parent. You shouldn’t say that.

And then we walked. Because, what else was there to say?

Back to the doctor visit…. The doctor recommended we try Namenda and the Exelon patch again. As I have written in past blog posts, we have tried EVERYTHING and I am not going to rehash why Jim is off all meds at this time. But, I believe we are going to give them another try. He told us that sometimes when a patient is further along and showing increased symptoms the medications can show help in lessoning some of the symptoms. But of course, they aren’t a cure. As the doctor spoke and Jim listened, he started to cry again. He understood he was hearing that he is declining. The doctor told us we wouldn’t do the memory tests anymore because there wasn’t a purpose any longer and it was causing stress. He also told us we didn’t need to schedule an appointment for a set amount of time. We would start the medications and call in as needed. There is no point in seeing him as Jim declines because there is nothing else he can do. This is not to say we can’t come see him and won’t, but there is no set six month or nine month time frame anymore. Just whenever we feel we need to see him.

Whew. I am crying as I write these words. My heart aches for not only Jim, but all of us who travel this journey with no help. No way to fight. No hope.

I am not a scientific person, but many times I wish for a scientific answer. How long does Jim have? What trajectory is he on with the decline he has shown? It may seem a little morbid to some, yet others will completely understand. I think it is human nature to want to know how long you will have to endure a form of torture and pain. When will this be over? When will Jim not be in pain? Actually, that is more of a clichéd expression. Jim isn’t in pain. Only when he realizes he is leaving his children. Most of the time, he is happy go lucky and in great spirits. He has a great attitude and is very pleasant to be around. He isn’t angry or sad or even moping around. He has the best attitude he could have and I am so proud of him. So when I say something about wanting a time frame, it isn’t because I want him to be gone, it is because I am trying to plan, trying to figure things out, trying to adjust and have a concept of what lies ahead. I believe people do this in all aspects of life; whether it is planning for high school, college, their first job, marriage, having a child, moving to another country, moving out of their parents home, changing jobs, etc. We are always looking ahead and asking for time lines.

It was mentioned that Jim was declining faster than some, but not as fast as others. I guess you would say he is somewhere in the middle. Not a fast decline but not a slow one either. I didn’t ask the doctor about a time frame. He wouldn’t be able to tell me. Alzheimer’s Disease works so differently for each patient. And Jim is very healthy otherwise. I know this is a long haul. I can handle it. We all can handle it. But I hate that he is having to and I hate that the kids are having to. I hate that my friends have to take care of us and I hate that my parents must use up so much of their retirement years rushing to help us. I despise being the damsel in distress. I know Jim despises it too. He was our knight in shining armor and unfortunately, he knows he isn’t any more.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (22)

Better Them Than Me

 

Clowning around in 1998. Who knew what would be lurking ahead for us?

Clowning around in 1998. Who knew what would be lurking ahead for us?

Today there was another school shooting. As I listened to the information about what happened on the radio, Frances told me about the lockdown practices they have had at her middle school. I couldn’t help but think back to when I was in school….there was never a drill for a shooter or a thought about someone possibly coming into the school to harm us. Then I thought about the parents who worried about their children when they heard about the shooting and the parents who were unlucky enough to get the call that their child did not survive. Or worse, their child was the shooter. My heartfelt condolences to those families.

Then my mind drifted as I drove and I thought about what it would be like if that happened to us. Don’t we all normally do that? We try to put ourselves into the shoes of others….whether it is a tragedy or winning the lottery…we try to imagine what we would do.

Yet, I wonder, where do we stop imagining ourselves in someone else’s shoes and start thinking it will never happen to us? Isn’t that why people still smoke? Still ride in vehicles without seatbelts? Still drink and drive? Still mix alcohol and drugs? In typical human fashion, we all tend to gravitate to the “I am so sorry that happened to them, but it won’t happen to me” scenario.

I think every single one of us is guilty of this in some shape or form. We have empathy for others going through a horrible crisis, but we stop short of becoming petrified we will also fall victim to whatever atrocity lurks around us. Probably some form of self preservation at its rawest form.

Then, before you have any idea what is going on, you become immersed smack dab in the middle of some awful thing that is ruining your life and the lives of your family members. In my case it is Younger Onset Alzheimer’s. And it sucks. Big time. As I have mentioned many times, I have friends and family that are helping out and doing whatever they can to make this tough road a little smoother. But no matter what they do, they can’t REALLY help. They can’t cure Jim. They can’t stop the progression. They can’t save our children from losing their Dad. They can’t change the fact Frances’ and Brads’ childhoods will be encased in Alzheimer’s, Alzheimer’s, Alzheimer’s. They watch, they listen, they do. Then they go home and get on with their lives with their healthy families. They see us and are grateful they aren’t us. They know it could happen to them, but think it won’t.

I am not here to be a “Debbie Downer” but let me point out something to each of you: as you get older, the chance that either you or someone you love (parent, spouse, sibling, friend) will succumb to the horrors of a dementia is unbelievably high. Unless a cure, a vaccine or some type of treatment is found, we are all going to feel the excruciating pain and agony of dementia. And the financial burden. Which, in all honesty becomes so consuming you find yourself unable to focus on the person you care so deeply about because you are just trying to survive. And when your loved one is diagnosed, it will be too late to pour in money and try to have your voice heard. If you want to save them or possibly yourself, the time is NOW to do something.

Yes, we all feel like the bad stuff is horrific when it is happening to someone else and we are saddened, yet we are confident it won’t happen to us. What are you going to do when it does?

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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)

No! You can’t.

Redskins game, Dec. 2012.

Redskins game, Dec. 2012.

If Alzheimer’s was contagious, there would be millions of people running around scared and demanding that a cure be found. There would be such a great demand for more answers and better care that change would happen. Quickly.

But it isn’t contagious, so we must fight for every single penny that is given towards finding a remedy.

I sometimes wonder if each of the people who would be diagnosed at some point in their life knew they would be the one out of every 3 seniors who would die from dementia would they quickly take up the cause?  What if their beloved children were more susceptible and more likely to inherit this death sentence? Would they stroke a check? Would they march in the streets? Would they scream and yell and curse and fight like their life depended on it?

October 2006. Brad was 2.

October 2006. Brad was 2.

What if you were told EACH of your children has a 50/50 chance of developing the first signs while you will be alive to witness their decline? And when you search the doctor for answers, begging with your tone, body language and questions for a way to keep the inevitable from happening, you are simply told there is nothing you can do. You can keep them from football, boxing and soccer. That is it.

So, you do the one thing the doctor has told you. You break your athletic sons’ heart and forbid him from participating in soccer, even though he really wants to. You forbid him the pleasure of holding a pigskin in his clutches and running for dear life towards the goal line . Even though he has told you time and time again how much he loves playing football and soccer, you hold steadfast, with your belief that this is the one only thing you can do at this stage of the game to possibly make a difference.

Brad having some fun in Dec. 2009.

Brad having some fun in Dec. 2009.

 

Two years ago we were able to attend a Washington Redskins game. They were playing the Baltimore Ravens so it was a big game. I had gotten tickets because Brad loves watching football. He was so excited to attend a NFL game. The fans. The chants. The chill in the air. It was a great family memory making event for us. During the game, Brad struck up a lively conversation with some gentlemen sitting behind him. One of them coached youth football in Maryland. He was impressed with the excitement and knowledge of the game Brad displayed. He asked him if he played.

“No.”

“Why not? I bet you would be good.”

“My Mom won’t let me.”

“Momma, you need to let this boy play some ball. Let him come up here and play for me. I will teach him how to play.”

Yes, this perfect stranger, meaning no harm, still stings my heart and soul with his innocent remarks. Even recently,  a father of a teammate on Brads’ baseball team, whose son also plays football, he told me I should let Brad play. He educated me on how well made the helmets are now and how safe it is. It took all of my self control to remain calm and collected when I really just wanted to ask him how he would feel if the only thing he had been told by the doctor to help stave off a disease that is killing his father would be to prevent him from participating in the very thing he was demanding I let my son do? How dare them. How dare they, albeit with no ill intent, call me out as a bad Mom for not letting Brad play a sport? How dare they tell me what I should do for my son? How do you fight a society that doesn’t listen? Doesn’t look too far down the road? If this disease afflicted children or even teens, would we not have our funds for research?

Brad playing soccer before Jim was diagnosed and I was told not to let him play. Sept. 2010.

Brad playing soccer before Jim was diagnosed and I was told not to let him play. Sept. 2010.

Let me be clear here; I LOVE football. I used to love playing it in the backyard with my brother and his friends and I loved watching it. Jim and I would sit each Sunday and watch game after game. (Before kids) But as his disease has progressed and news reports have surfaced linking the sport to dementia, I have lost the thrill. I now cannot see the excitement in a great tackle but I can only envision the damage being done. I can picture the brain rattling in the helmet and wonder if it is worth it. Then I will turn to look at Jim and see the dimness in his eyes and lack of expression on his face and I know it isn’t. It isn’t worth the pain and suffering for either the player or the people who love them.

I know what it feels like to love a game . When I think back to my days playing basketball, I can still feel the thrill of running up and down the court with my teammates. I can recall how exciting it was to hear the fans, make a play and to be part of the game. It is exhilarating. It is challenging. Being a member of the team is a feeling of security and family that you don’t get anywhere else. Whether it be basketball, football, baseball, or soccer, being part of the squad is a great privilege and teaches life lessons on teamwork and hard work. Who am I to deny my precious son this opportunity? Yes, he gets to play baseball and basketball. We all know, though, that the thing you want the most is the thing you can’t have. So, while he is a great joy to watch on the diamond and the court, he longs to run the gridiron and the field.

I will stay strong in my steadfast denial of his joy, but it will continue to break my spirit one comment at a time.

Brad at the Duke/Carolina football game, Nov. 2013

Brad at the Duke/Carolina football game, Nov. 2013

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)

Dear Mr. President…

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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)

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)

Happy 365 Chances to Make Someone Else Happy

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Happy New Year. We say these words to each other in merriment. We say them to strangers as a greeting. It is something we wish for one another but how often do we help others actually have a happy new year? All year long?  Do we celebrate together and then toss the sentiments aside once the celebration has worn off? Do we discard our desire for others to be happy along with our annual resolutions? Why is it so difficult to stick to lists of things we want to better about ourselves? It is also sometimes just as difficult to remain a steadfast partner, friend and caregiver.

When the clock was striking 2000, everyone was worried about Y2K…remember? Jim and I brought that significant time passage in together on the island of Martinique. It was a blast. We had a spitball fight with the other dinner guests at our resort (a tradition in France, so we were told) and met and danced and rang in a new century with people from all over the world. We had to fly out the next day and there was lots of chatter about whether or not the planes would be able to take off. They did. We were disappointed. We were more than willing to stay another day in paradise. Later that year I would become pregnant with Frances and our family would grow and become enhanced in ways I could have never imagined. I also couldn’t have imagined at the time that in just a few years I would be mourning Jim every day; while he is still fully alive and completely healthy other than his early stages of Younger Onset Alzheimer’s Disease. I suppose it is a blessing to not have a crystal ball. I look back and can see our youth, our love, our happiness. I cannot fathom feeling, looking or living that way again. All I can see now is Jim’s progression and the decisions and work I have laid out before me. How I long to have the ability to be carefree and full of options and life as we were just years ago.

It will be a new year. But will it be a happy one? We are ultimately all in charge of our own happiness, regardless of what life hands us. Keeping this in mind, I believe the only way I will be able to remain happy is to focus on the kids. Focus on helping others. Focus on making it a “happy all year long” for the many caregivers that are going through this journey. I will remain steadfast in my determination to speak out and educate. I have been blessed this past year with new friends that have stepped up to the plate, old friends that have been a beacon of support and love, much needed assistance from perfect strangers and the love and affection of two children, two parents, a brother and a husband that remind me everyday what matters most. I want to pay it forward. With a little money and a lot of time, I plan on doing this. Just finding that money and that time….

It is hard, very hard, to remain strong day in and day out. It is hard to rely on others for help. It is easy to concentrate on helping others at the same time we ourselves are needing help.

It will be interesting to read these words again in 365 days to see how I feel, where we are and what changes have occurred in our world.

I ask that each of you focus on making 2014 a year to find wonders that surround you, find love from within and to help others make this a happy year, all year long. The benefits you will receive will far outweigh those that you give. And it will make our world a better place.

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

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)

It’s coming….

04.17.13-Mother-Teresa-quotes-the-greatest-good

I don’t love Jim anymore than millions of other people love their spouses. When I say this, I mean it in a way that conveys understanding that others love just as I do. As we do.  Sometimes I find myself wondering what my life would be like if I hadn’t met Jim. If I hadn’t been forced to deal with Alzheimer’s Disease and become so involved in helping others.

When I try to envision a life without Jim, without our children and now, without being immersed in all things Alzheimer’s, I am left with a blank mind. I am unable to see my world without Jim, without Frances and Brad and now, without the friends, colleagues and support I have found through my Alzheimer’s world.

I have been blessed recently. I have been blessed with dinners, gift certificates, financial support, help around our home, notes of encouragement and with renewed energy to make a difference.

As I accept all of these blessings, I do so with a bit of guilt. Why? Because I don’t feel like I deserve anything. I know there are so many others going down this same path who are on their last rung, last bit of rope and they are struggling just as I am to hold on. Who is to say I deserve help more than they do because I speak out? Because I get an article in the paper and I have a blog and I have friends and family that come to my rescue daily?

I am only one of MILLIONS of people in this world travelling this downtrodden path. I have chosen to speak out and share because I can. Because MY personality lends itself to be able to. Why should someone who is more private or more soft-spoken or just plain shy not reap the same benefits I do?

There is survivor’s guilt (which I already have even though Jim is still very much here) and then there is spokesperson guilt. Who knew this even existed?

My question to myself is What am I going to do about it? I have a plan. I am going to help others. A LOT of others. But, I have to get my ducks in a row and figure everything out. If I can do this, not only will I help myself, I will be able to help so many others it isn’t even funny.

Give me a little bit of time. Give me some patience and some support. I have a desire and there is a need. We will work together to get this started and then get this done.

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

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)

I want the original please.

 

Jim and I celebrating New Year's Eve in Las Vegas, 1998.

Jim and I celebrating New Year’s Eve in Las Vegas, 1998.

Jim told me something last week that has really stuck with me. It has bothered me. It has confused me. It has just really befuzzled me.

“I need to find you another husband.”

Yes, he actually said those words. Both kids were gone and we had been able to spend more time together, just the two of us. Working on Frances’ room, going out to dinner, driving to and from the NIH. Talking. We haven’t done much of that lately. We still didn’t do as much as we would have 5 years ago, but we talked more than usual.

I didn’t know what to say to him. What an unselfish thought. But at the same time, Wow!

Let me be very clear. I don’t want another husband. I knew I was going to marry Jim after our first date. He knew the same. We have worked hard to stay together for 16 years. It hasn’t always been easy and there have been times we have both wanted to call it quits. But we fought hard to keep each other. Personally, I think Jim fought harder. He was 35 when we got married and was more mature and ready to be a husband and provider. I was still working on who I am (actually, I still think that) and what I wanted out of life,  figuring out how to be a wife and keep my identity. Jim has the patience of a saint. He accepted my growing pains and loved me more. He waited patiently while I circled around our life together being the independent, hardheaded woman I am. And he loved me even more.

We fought. We cried. We yelled. We whispered. We wrote letters. We went to marriage counseling. We travelled. We supported each other. We opened up to each other and kept secrets and confidence. We scrimped and saved. We spent and explored. We are united by love, by history, by vows and by family.

How could he say this to me? Did I want him to say this to me? How did I feel? I am still not sure. I love Jim. I have no desire to find another husband. The thought of starting over. The thought of meeting someone (hard), introducing them to my children (I think I am feeling nauseous), my parents (again), having those awkward first dinners with friends, filling in the stories of my life, listening to stories of his life, determining if he has a secret past that I need to be aware of, working out nuances that are unfamiliar…… No. I am not even remotely close to being ready or interested.

But then I think, I am only 43 and most days I feel like I am 23. It is all so confusing. Then I really think about Jim and us and our children. I think about the fact Jim has always told me I am most beautiful in just a plain t-shirt and no makeup. He loves me as me. Nothing fancy. Or fake.

And then it all becomes real again and hard and emotional and hurtful. He is still leaving me. Even if I don’t want someone else. I can’t have him. The REAL him that made me so giddy and happy and content with my life. I can’t have the man that loves me with all of my faults and my idiosyncrasies. I can’t have the person I want with me when I have wrinkles and turn gray and with just a glance will know what I am thinking or what I need. And I won’t know the same about him either.

For now, I still have Jim with me. I am so grateful that I do. I don’t know that I am grateful the way I will one day look back and wish I had been or should have been. During the rush and stresses of day to day life it is hard to be grateful for what you have right now. Don’t we always want more? Don’t we always want something better and something newer?

Not I. I want what I have (ok, maybe a new wardrobe or a new house.) But I don’t want a new family. I don’t want a new Dad for my children or a new husband. I want the man I decided to marry 17 years ago. I want the man that has been so consistent and accepting and adventurous and supportive and loving. I don’t want a replacement. I want the original.

Jim witnessed me giving birth twice. He has seen me depressed, drunk, happy, emotional, sick, energized, impatient, slouchy, sweaty, misinformed, irrational, frustrated, elated and heard me sing. He has seen the core of me. He has accepted me and loved me through it all. And I him. We are supposed to drive cross country in an RV. We are waiting until Brad is old enough to raft the Colorado River in the Grand Canyon. We haven’t gone to Australia yet. We haven’t paid off the house and retired and watched the kids grow into young adults with families of their own.

Time. Time can either be your friend or your enemy. With Alzheimer’s it is both. You don’t want to drag out your loved ones demise to the point that they are years in a home, bedridden and completely unaware of who you are. But you want more time with them and you want time to fulfill your dreams together. What a bitter irony.

 

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)