Introducing The Garner Foundation

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A little over a year ago, someone approached me and told me I was in the wrong profession. They had watched me at some Alzheimer’s events and had watched my videos. Then they called me and told me that I should be using my drive and my passion to help others. Actually, there was more than one person over the course of about a year who made this suggestion.  I knew what they were saying was true, but I didn’t know how to transition from my current job into starting a non-profit. I can’t afford to just quit my job to volunteer without any income. I wish I could.

Like most founders of non-profits, I had no idea what to do or where to start. So, we met with an attorney. I called people. I met with professional fundraisers and other non-profits. I did research online. In the meantime, I worked full time and have continued taking care of our family. I haven’t been able to focus on the foundation like I would like, therefore it has taken much longer than it should have and much, much longer than desired. Plus, it took over 9 months to get the 501c3 status approved. That’s ok. I can feel the momentum and I can feel something greater than myself pushing me towards the path I am supposed to be on. It has been burning inside of me, unable to be ignored and for those of you who have been reading this blog since I started, you know how and when I figured out what I am meant to do. You know I have been dreaming about this for a very long time. I found my purpose in this world.

I am proud and happy to say THE GARNER FOUNDATION is official. I have a board that is supportive, understanding and who all are passionate about helping dementia families. We have already raised over $7,000. But it will take much more than that to do what we want….

Our first focus will be help with Elder Care Attorney consultations. The plan is to set up a network of attorneys who will help families recently diagnosed so finances can be put in order. This is a very important, but costly step. We were fortunate enough to find a great attorney to help our family, but only after visiting two others who were not qualified to assist us with our specific situation. Part of setting up this program will be educating doctors on how necessary it is for patients to be told it is imperative they contact a specialist in elder care law.

Secondly we are going to offer respite care. Any caregiver knows how important this is and what an impact a break can have on the health of everyone involved. I haven’t found any insurance company that covers this and it is extremely expensive.

And finally, Make a Memory family vacations. When we finally figured out what was wrong with Jim, I had him put together a bucket list. But finances were limited since I needed to save for his care, he was no longer working and I was making half of what he used to bring in. I searched high and low for a way to get help fulfilling Jims’ bucket list and for our young family to take a last, memory making vacation together. But I couldn’t find anything. We eventually did make a spectacular trip to Alaska, but only after we saved for over two years and got some help from family and friends (and even a few strangers). Not everyone is so fortunate and I want to change that.

Each item The Garner Foundation is going to help dementia families with is something I have witnessed firsthand that is needed and will make a difference in the lives of so many. I will still advocate in Washington. I will still write about our story. I will still do whatever I can to promote awareness and educate the public on this national crisis. But I am going to do more. For all of you. Because I can. Because I have to.

A website is currently under construction; www.garnerfoundation.org. You can visit this landing page and make a donation or to sign up to get notifications. There is still a lot of work to do but I am confidant this is my destiny and therefore, we will be able to change the paths of many others who are struggling each day just like we are. Your support and help spreading the word is needed. If you know someone who can help, please share. If you work for a company that can help, please ask them to. If you can’t ask them, let me know who to contact and I will. If you just want to send words of encouragement, please do so. We will need all the help we can get.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (13)

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)

Blessed to find lots of Rainbows

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Why I am so blessed when I am going through the roughest time in my life:

1)   I have two absolutely amazing kids. I try really hard not to brag about their awesomeness, but when I need to find something positive going for me, most of the time they are all I have. They love me unconditionally when I am not the best Mom and they help a tremendous amount around the house. They do well in school, participating in lots of different activities and are not slaves to the TV or Xbox. They love nature and care about our world and animals and they both love learning. They still snuggle with me in bed and give me hugs and tell me how much they love me. Yes, I am blessed in ways that money could never, ever buy.

2)   I have friends that have not forsaken me. I cry. I say inappropriate things. I get too loud. I drink too much. I forget things I am supposed to remember. I am now a moody, crazy woman. Yet, they still come around to check on me and look out for the kids and continue to ask how they can help. The world can be a big, scary, lonely place if not for the comfort of a friend or two. Even better: the friend who can be crass and make me laugh by saying the most politically incorrect statement that is funny because it is true. Not only do my friends take care of me, they bring Frances and Brad into their own families and show them the meaning of family and friendship and allow them to have second and third homes. Sometimes they magically appear to help with little things that need to be done around the house. The front yard weeded. The old paint cans disposed of. Lights hung in the bathroom. Sometimes they look out for Jim; offering to take him for walks and giving him rides to play tennis. Each little gesture adds up to enormous support that keeps us afloat.

3)   My children attend great schools. They have principals who care. Teachers who care. A place they can disappear from their “real” world for a while. Brad’s school is doing a fundraiser this Saturday morning. They have been planning this fun run for months. One night, about 3 months ago, around 9 o’clock there was a knock at our door. There on our porch was one of our neighbors, the PTA treasurer. He had come straight over after a PTA meeting to apologize. It seems this huge endeavor was inadvertently scheduled for the same morning as our upcoming Walk to End Alzheimer’s. I have been told by numerous sources, all of whom were present in the meeting, that when it came to light that the two events were coinciding and it was too late to change the race, everyone felt horrible. It was decided that I needed to be told right away and we needed to know that they support our cause 100%. To counteract the fact the school will not be able to participate in the walk like they did last year, they have discussed Alzheimer’s Disease on the morning announcements, they have made donations to our team, they made the t-shirts for the race….PURPLE (the school color is blue), and they have reached out to me over and over again to support our family and remind us how much Brad means to them. In a time that I am feeling the pressure and stress of our situation, there is hardly a way to express the comfort that comes with knowing others are looking out for our children.

4)   My children are active in sports and music and have teammates, coaches and instructors who help us whenever they can. I have had to rely on other parents to give both kids rides to practices or games. I have had to sit in the bleachers while Jim makes some inappropriate comments and search their faces to find they have (thankfully) no reaction. Sometimes, they see I need to be left alone and they let me sit in my chair, watching the game and allowing me to get lost in my own mind for a while. Sometimes I sit quietly, not even able to cheer, but I hear them, loud and clear, cheering for me. I have coaches who do not hold the fact I sometimes cannot get them to practice against either player (some coaches have been known to withhold playing time). Brad’s team is again participating in the walk for the second  year. They are very busy families, and yet, they carve out a precious Saturday morning to show us how much they love us and care about us. How do you thank someone for that?  You can donate to their team by clicking here.  Both music teachers patiently forgive me each time I have to call and re-schedule a lesson. They offer tickets to music shows and bring smiles of joy to the kids’ faces with jokes and the shared love of a good piece of music. 

5)   I have parents who drive 4 hours each way to come help me with the kids and Jim. They call me almost every day to check on me. They ask about the activities we are doing, they take the kids for pizza and ice cream and if needed, remind them of their manners and chores. I never have to worry about letting them down…they have loved me when I wasn’t very loveable and they have supported me when I wasn’t very smart. They help me “parent” when I need the break from being a parent. They listen without judgment. They hug. They cry. They show up and keep showing up. They are above all else, my rock.

6)   I have a home to protect us from the storms. This home is located in a village that surrounds us with support and help.

7)   I have a job.

8)   I have my health. As I watch Jim decline, I become more grateful for my own healthy mind (although there are times that may be debatable) and my own healthy body. I worry my health will suffer with the stress I feel on a daily basis, but I am hopeful that I will be strong enough to make it through.

9)   I have new friends. I have made dozens of new friends through our advocacy for Alzheimer’s Disease and through my blog. I have heard so many stories and had so many words of support sent our way I have learned without a doubt we are not alone in this fight.

10) I am alive. I am blessed to just be awake on this side of the dirt beneath my feet. I sometimes forget to cherish the fact I am sharing in the lives of my children, my brother, my parents, my friends and Jim. There was a time in my life I was worried about living long enough for the kids to know me. Now I am grateful they do and I want more. I want them to know me with their children.

Sometimes it is extremely difficult to remember how blessed I am. How blessed our family is. Sometimes, I cannot see the sunshine in our lives but I am only focused on the black cloud I seem to be immersed in. Sometimes, after the rain shower, a rainbow emerges to light the way.

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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 (7)

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)

Rehab Follow UP

Jim working on a puzzle and a word search at rehab. Thank you for the picture Rona Altschuler.

Jim working on a puzzle and a word search at rehab. Thank you for the picture Rona Altschuler.

Thank you for all of your support, love and concern. What a long, whacky, scary, emotional week this has been. I am exhausted. Literally. I apologize, but I must keep this one short, but know I have a LOT to say!

First of all, the doctor from the hospital called Monday to explain and apologize for his error. It seems after reading so many comments and messages this is an all too common problem and definitely one that needs to be addressed.

Second of all, Jim has been doing splendidly in rehab. He is just about back to his old self. I think he will make it pretty close to his baseline. His short term memory is still much worse and he is still confused a little, but overall, the difference is unbelievable. I honestly didn’t think last week at this time he would ever be coming home again. So glad I was wrong! He is slated to be released THIS Friday! He has been working hard and has improved so much, they are kicking him out. He had an infection in his lungs from silent aspiration. Scary stuff. As soon as the antibiotics really kicked in, he was a new man.

Many have asked why Jim isn’t on Aricept or Namenda. He was. I wrote about why he is no longer on these medications here: We Are a Team!

As happy as I am that Jim is recovering and doing so well and finding his sense of humor so easily again, I am scared. Seeing him the way I did, going through the emotional, gut wrenching journey with him in the ER and the hospital, seeing him so lost and confused….it is too much to play over and over in my mind, but for some reason I do. It is awful. I try not to, but I can’t help it. Witnessing the kids see their father in this state was utterly heartbreaking and  awful. I worry about what will happen if this type of thing happens again. What if I don’t come home in time to find him? He would have died. DIED. Like, forever gone. Do I now need to hire someone to stay with him? How will I pay for that? I am stressed to the max trying to figure everything out. Stressed actually isn’t the right word. Completely freaked out is more accurate. He is my responsibility just as much as the kids are. But I don’t know yet what the right answer is for our family. He is not ready for a home yet. There is a day program in our local area that would be great because they do activities with patients all day, but you must be at least 55 years old. Jim is only 52, so alas, he is too young. There is another day care place, but they are private pay and medicaid. If I was going to be able to pay, I would just hire someone to come to our home. The ideal situation would be to send him to some type of sports camp all day, every day. He would be so happy and have such a good quality of life. Volleyball, softball, tennis, bowling, basketball, racquetball, soccer…it wouldn’t matter. He would do so well. That would be my ideal situation for him. Not sitting around trying to figure out what to do. Not pacing the house searching for something he will never find.

Yes, I am so very happy, But at the same time, I am very worried.

Thank you again for all of the messages and the empathy. I am so grateful!

posted by Karen in Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (15)

Hospital Stay, Day 3

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Where do I start? Well, I will try not to ramble on with insignificant details. I will give you the great news first….Jim was released from the hospital today and went straight to a rehabilitation center. Because he stayed the required 3 days in the hospital first, his medicare will cover the costs with rehab. This is important information for you to know if you will possibly be dealing with a similar situation.

Before Jim left the hospital, Dr. ‘I think it couldn’t be Alzheimer’s Disease because he is so young’ came back by to do a final evaluation before discharging him. I thought we were moving past our initial meeting where I thought….well, see what his name is and you will understand what I thought of him. Breathe Karen, breathe.  Like I said, another conversion for another time. Back to today….the doc and I have a lengthy conversation about what Jim will be doing at rehab and what medications he will continue and some other not important for this story stuff. The main thing to understand and know is that we discussed the 2 medications he was on and would continue on…Mucinex and his antibiotic. He also recommended a breathing treatment, but not as important.

He gets to the new digs. I visit with him, get him acclimated and go home to pick up his clothes and some photos to put up. I bring Brad back with me to visit. I give him a shower because otherwise they won’t be giving him one until Monday. (ewwww.) We go back home to eat dinner. I go back up to make sure he is ok and get him to bed. He tells me he is tired and wants to go to sleep. No problem. I tuck him in and turn out the light and remind him I will be there in the morning. One last “I love you” and I am out the door. As I am leaving, I run into the assistant nurse. She is handing out medications. I tell her he is in bed and the lights are off. She tells me she will be going in shortly to give him his meds. Something unexplainable told me to ask what he was taking. I already knew the answer but for some reason I was prolonging my exit.

“Aricept. Lexapro. Namenda….”

“No. That isn’t right. He isn’t on them and hasn’t been for a long time.”

“That is what it says. If you have a question, you can go speak to the nurse.”

So I march, furiously and with purpose, to the front desk and find the nurse. I tell her I would like to look at the directions from the doctor at the hospital. There must be some mistake because my husband wasn’t on any of those drugs. But there it is, in black and white. I was pissed is an understatement. Not only did it have in his file from the hospital to take these drugs, it DID NOT list the Mucinex or breathing treatment. The thing that really got my blood boiling though was the very last paragraph. This paragraph was right below the line that said it had taken him over 30 minutes to do this discharge (we met for less than 10 minutes, so he must have spent a long time figuring something else out). This paragraph at the very bottom of the last page said that he had gone over this treatment plan in great detail with the spouse and said spouse was in agreement with the course of action written out. What? Are you kidding me? It took every ounce I had to keep myself composed.

Needless to say I made it very clear to the nurse that he was not, under any circumstances, to get the aricept, lexapro or namenda. If the doctor there at the facility had a question, they could call me. (They won’t see him until Monday). I then called back to the hospital to let the poor person who was stuck in the position to listen to complaints after hours hear how upset I was. This isn’t over. I am to get a call back on Monday. His meds are supposed to now be straightened out.

I know I am tired. I know I need to take care of myself. But there is no way I can let this slide. I respect doctor’s immensely. I admire the ability to get through medical school, to take an instrument and cut someone open, to save lives and change families and deal with death each and every day. I mean no disrespect to anyone in the medical field. But I cannot let this go. Putting Jim back on those drugs would have been setting him on a course of no return in my opinion, which is based on his already having been on them. This is very, very bad. Like I needed another reason to be upset and stressed.

I am so glad Jim was well enough to leave the hospital and has a wonderful spirit with him that makes you want to hug him and he continues to show us his wittiness. He is still having cognitive problems and his swallowing is also a huge concern, but he seems happy and he seemed to understand why he couldn’t come home yet. He cried many times today, just so overwhelmed to be with his family. And I am happy to still have him with us.

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

A Day in the Life

 

Frances and I  April 2002.

Frances and I
April 2002.

“Um…. I…. Um.…Did you….What am I….. Uh… I….uh.”

“Yes, Jim. Go ahead.”

“Uh, the front. Uh…. do you want me to….ummm….the front.”

“The front yard?”

“Yes.”

“What?”

“Uh, the uh part like a fur collar….Uh. Mmmm. By the flag. Like a collar. Uhhh…fur collar around.”
“The boxwood hedge?”

“No.”

“The liriope?”

“No.”

“The part,….uh, the part….fur. Fur collar. Um….Around……Around the uh, around the front tree.”

“The liriope is around the tree. That must be what you are talking about. The stuff that looks like long grass?”

“Yes.”

“That is liriope.”

“Do you want me to trim it?”

“No. You do that in the winter. You did it in Feb.”

“Oh. Ok.”

Another conversation that shows Jims’ decline. Another heartbreak. Another slip into a future that I am not looking forward to and don’t really want to live through.

Another frustrating situation for both of us. He is frustrated trying to explain himself and I am frustrated trying to understand him. The kids are frustrated. We joke that it is a game of charades, but you can only laugh so much at the fact your father cannot explain a simple thought to you.

I am in a constant state of despair. I just don’t have any answers and I don’t have an easy way out. I don’t see anything that will make this plight an easy one. An uneasiness seems to haunt me. Finances. The house. The yard. The kids. My job. Jim. His decline is on a more steady course than in past years. It is noticeable. It is impossible to ignore. There is a feeling that stays with me now; it is unshakable. A feeling of being in trouble. Like when I was a teenager and I knew I had done something wrong and it was only a matter of time before my parents found out and I would soon be in trouble. No matter what I am doing, who I am with or where I am, a sense of imminent doom looms overhead.

Brad and I  April 2008

Brad and I April 2008 Thank you Patti Brown for this perfect photo.

What have I done? What can I do different? How can I get out of this and save us from the terrible future ahead? What am I doing wrong? Should I have gone back to work sooner? Should I have saved every penny we ever made? How am I going to take care of me and the kids? How am I going to take care of Jim and work full time? What kind of person will I be when all of this is over? Will it ever be over? What kind of person am I for thinking this? I am horrible. I should not be thinking about me and my future. I should only be thinking of Jim and the kids. But, what am I going to do about the kids? What if the kids get this one day? Oh God. No. Please. Please don’t let my babies get this. I couldn’t take it. I would rather die than watch them succumb to Alzheimer’s. I might as well quit right now. I have to do something. What can I do?

Talk Karen. That is about all you are good at these days. Talk.  Get everyone you know to write their Congressmen. March up to D.C. again and don’t leave until they have a cure. Move to D.C.  Start a war like they have never seen. Wait. I can’t do that. I have to take care of Jim and work and take the kids to practice. Ok, then get everyone else to do that too. Will they? Will others care that my kids, my life, will possibly be taken from me when they are older? If they were getting this now, when they were young, people would care. But they will still be my little ones even when they are grown. They will be all I have left. Why can’t everyone see that? Why can’t everyone in the world stop and listen and care? Why can’t some really rich billionaire who spends thousands of dollars on a single dinner just give a few million to this? Wouldn’t they do that if it was their own children at risk?

What do I have to do? I can’t let them get this. I can’t not do something. What am I going to do for dinner tonight? I don’t think we have anything in the fridge and I don’t have time to go by the store. I could ask Jim to run to the store. Oh. That’s right. He isn’t driving anymore. I wonder if I took his license too soon. No, I did the right thing. I wonder if the kids have gotten their stuff done.I wonder if Brad read and if Frances cleaned her room.  I should call the house. Oh, I can’t. I have to call back Mr. Jones for work. I am tired. I wish I could just go home and take a nap. I wish we had a screened in porch so I could sit and take a nap in it. Uggh. I still need to sort a load of laundry and pay those bills that came in last week. Wait. Wasn’t it Jen’s birthday? Did I call her? Yes. I think I did. No. I might not have. Did I call back Melissa? Didn’t she call me and leave a message? I think that was a couple of days ago. Oh my God. My memory is getting as bad as Jim’s. What will I do if the kids get this one day and I do too? Who will take care of them if I am sick? What if I get in a wreck? Who will take them if I die now? What if Mom and Dad die right after I die? I need to make another appointment with the attorney and get that settled. Who should I make guardians? What would happen to Jim? Would the kids know I loved them more than anything? I should write them both letters. I don’t think Jim ever wrote those letters to the kids like I asked him to. What if I get cancer?  Who would take care of me and the kids at the same time? Mom and Dad would, but that would be a lot on them. What would I do with Jim? I can’t get sick. What if I do die though?

Who would pick up the fight if I am not here to do this? I wonder if any of my friends would? I wonder if the kids would? I need to do something. Maybe I should go jogging when I get home. I can’t. I have to start dinner and I need to work on those pictures from Alaska and I need to straighten up my desk and I have the book I am trying to read and I would really like to sit on the couch and watch a movie. Yes. A movie and a cold beer would be nice.I haven’t sat and watched TV in a long time. I think it has been a few weeks. What was the last thing I watched? I can’t remember. Maybe I will do that. I deserve it. Wait.  We don’t have any beer. I need to go to the store anyway. I wonder what I can fix for dinner tonight?

Frances and Brad. Vancouver. July 2014.

Frances and Brad. Vancouver. July 2014.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (17)

We are a TEAM!

 

Seth-quote-4

When I started this blog a year and a half ago, I had no idea what would happen. Would people read my words? Would anyone care about what was happening to our family and in turn so many other families just like ours? Would I be able to make a difference? How much of our personal life would I be open and honest about without exposing too much? Would this harm our kids? Would I lose friends? Would I be found out as someone who still can’t remember correctly where to put that apostrophe? Would I embarrass the kids or Jim? So many “what ifs” floated by and of course there really wasn’t a clairvoyant who could tell me what would happen.

It didn’t take long before I became aware that there was a huge number of people who were struggling with Alzheimer’s Disease and everything that goes along with caring for someone with AD. These souls needed to feel connected and somehow a little less alone. I am so very proud of the fact I have been able to fulfill this need for so many around the world. Yes, around the world. So, I sit in front of my computer, day after day, week after week. I pour over heartbreaking stories and feel less alone. I see the angst and suffering that so many of my comrades feel day after day. Desperation. Loneliness. Heartbreak. Determination. Grit. I love, Love, LOVE the correspondence that shows up in my inbox daily. I am so appreciative that anyone who feels the weight of the world on their shoulders would take the time to read my words and then take even more time to write to me….well, I am just honored.  I write from my heart; as I would speak to a friend. A confidante. Someone I want desperately to understand my side of things and simultaneously learn what it is like to be afflicted with this shitty disease that takes away each and every aspect of your humanity. I do this to educate and to support. I do this because it heals me.

I recently received another letter asking for my advice. This is a compliment to me but let us not be fooled: I am experienced in dealing with the early phases of Alzheimer’s Disease, but I am by no means an expert. I can barely pronounce many of the medical terminology associated with dementia. I seldom can repeat verbatim what I have just read or heard when it involves scientific jargon. I get the gist. I comprehend. I get overloaded when I read too much research and information online. Just because I live with someone who has this disease does not mean I am qualified to tell anyone else what to do. One thing I have learned over and over; Alzheimer’s affects each patient uniquely. Drugs work differently. Outlying effects happen. Strategies and opinions abound.

Hi Karen! I remember reading that Jim no longer takes aricept (not sure about namenda) and I was wondering what his Dr. may have said about that. Did you ever see any benefit of it for Jim in the beginning and how long was he on it? Dwight has been taking aricept for over 4 yrs and namenda for over three years and he seemed to stay about the same for maybe a year after starting the aricept……then the decline seemed to escalate. As you know it’s very expensive.  I wouldn’t be as concerned about the cost If it did any good at all, but when he started the aricept the Dr. said it would only slow down the progression for about a year……….if that’s the case, why are they still prescribing it to him? I asked a pharmacist about it recently and they couldn’t say one way or another……and that probably wasn’t the person to ask. After all they are making money off of it, right!?  Dwight’s next appt at Sanders Brown Research Center is in August and I’ll bring it up to them………but I’d love your input.  Dwight has never been one to take any medicine…….just toughed it out :) , so I hate the fact that I’m giving him all this stuff and he’s getting no benefits from it that I can see. What if they tell me he’ll go downhill faster if I quit……..could that be the case? I’m just afraid of doing the wrong thing.

I share this letter because I know, yes, I know so many others could have written it. MANY could have. MANY have. So many of us who are trying to figure out what to do are desperately searching for answers. I have very recently realized that even though I said a vow to honor Jim and to stay with him in sickness and in health, I now understand I am responsible for him. If he gets lost. Me. If he doesn’t eat. Me. If his shirt is on inside out. Me. If he loses his glasses again or doesn’t clean his toenails or take a shower. Me. Me. Me. Yes, we all agree and understand our vows on our wedding day, but we have on rose colored glasses and we never think that our loved one will no longer be able to understand finances or will become unable to discipline the kids or carry on a conversation with neighbors.

So, I understand the desperation in each and every message I receive. Thank you for thinking so highly of me, but I am afraid I can not help you. I can only share our own personal experience. What I do encourage everyone to do: ask your doctor. If your doctor does not give you satisfactory answers, find another doctor. Find a support group. Ask every member of that group about their doctors and about what medication/treatments they have tried. Look online…there are some wonderful Facebook groups to seek out answers. Ask, ask, ask. Then be quiet and listen. Listen to what they have to say and then determine how it will help you with your dilemmas.

Our first neurologist was not anyone that I would recommend. So I asked around and found a new one. I feel as if I am Jims’ advocate. It is my responsibility to make sure he is heard and paid attention to. When he lost a lot of weight after being on Aricept, I spoke with the doctor and took him off (after many other tests came up negative). When Namenda and Exelon showed no improvements, I spoke with his doctor and took him off. Either way, do your own research. If you read about any drug used to combat the symptoms of Alzheimer’s Disease, you should find that these pharmaceuticals do not promise or intend to cure. They will help stave off symptoms for about a year at best. The patient will eventually end up in the exact same place they would have been without the prescription. So, the question remains….how can you determine if the drug is helping? Would they be declining more or less without the drug? There is no way to tell because this disease does not affect everyone the same. Time frames and symptoms vary as do the lengths in between changes. Not every patient has side effects. I have sat in support groups and at symposiums and listened as caregivers tell about positive changes seen when drugs were started. And I have witnessed firsthand this not being the case.  There is no way to know. You must do the best you can and know that your decisions are coming from a good, honest place.

Unlike most illnesses, there isn’t a “normal” course of action. Caregivers have a lot of leeway and a lot of input. Unlike a family who faces a battle with cancer or a heart attack, you do not visit an expert, choose a course of action, start fighting the battle, return for treatments and tests on regular intervals and have the possibility of a win. When you receive the horrible news that Alzheimer’s Disease has made itself at home in your brain, you have no options. No surgeries. No treatments that will lead to a cure. You have a doctor’s appointment in 6 months.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (17)

Alaska!

Posing by a gushing waterfall in a rainforest in Juneau.

Posing by a gushing waterfall in a rainforest in Juneau.      July 2014.

First things first: Our trip to Alaska was great. Great in the sense we got away from everyday life and got to see some absolutely AMAZING sights: Glaciers, Bald Eagles, Orcas, Humpbacks, Otters, Seals. Just breathtaking mountains of snow, trees, mist, clouds and water all rolled into one.

We had never been on a cruise. Actually, no one in our family has ever really wanted to go on one. When we first started talking about visiting Alaska, we were going to fly there and do our own tour of the state. Prices and Alzheimer’s Disease changed our agenda. After much thought and discussion, I decided (notice the “I”) we would forgo our previous plans and go with the cruise option. We would join all the other tourists at the port of calls and try to find our way among the masses versus venturing out on our own for parts unknown.

I have been asked several times since our return if Jim enjoyed himself. Yes. Yes he did. As much as you can tell, he did. Since Jim is no longer showing much emotion or throwing out many comments, you must listen and observe closely. As my Mom told me, “That is the most excitement and emotion I have seen from Jim in a long time.” She was right. As we emerged from the rainforest we were touring, into the sights of a huge, beautiful, blue glacier, Jim exclaimed, “Oh wow.” Perfect sentiments, but unusual at this point with him.

Searching for moose outside of Anchorage, Alaska. June 2014.

Searching for moose outside of Anchorage, Alaska.             June 2014.

Many times he just sat and watched the beautiful scenery float by. He seldom said much about what we were doing. But there were smiles and times of excitement that we don’t get to see anymore while at home. There were also the times he got lost on the cruise ship. Even I had trouble at times, and I am good at navigating. But he got stuck on a floor and couldn’t figure out how to get back to our floor even after calling a few times. Eventually my Dad went to get him, after we  had been searching all over the ship for him. It was frustrating and sad. We all felt bad. Jim didn’t seem one bit bothered. It is our new normal. It was a lesson. We learned that he couldn’t be left alone at all and needed to be with someone, even it was one of the kids, at all times. Sad. Annoying. Emotional.

One night, I was sitting in our cabin while the kids were out meandering around with their new friends. Jim was slowing searching around the cabin. Eventually, he sat on the bed and started to cry. I didn’t understand immediately why. So I asked him why he was crying. “Because everything I do from here on out is going to be the last time I do it. Everything is the last time.” He was having a moment of clarity. He knew why we were on this trip. He knew he wouldn’t be coming back. Even if the kids and I eventually did.

Later, on the last day of our journey, Jim seemed content. He was happy. He was awake and alert and enjoying himself. We all were. He hugged me and thanked me for taking him to Alaska. He thanked me for being a good wife and taking care of him. And he cried again. But these were different tears. Sad but different.

Jim and Brad enjoying a beautiful sunset on the ship. July 2014.

Jim and Brad enjoying a beautiful sunset on the ship.          July 2014.

And I waited. I waited until we had gotten home. I waited until we had survived the red eye flight and had started laundry and had unpacked our bags. I waited until I had the rare moment alone. And I cried. I cried because I was spent. I was emotionally and physically spent. Even after taking a wonderful vacation, I was tired from the psychological strain of making it all perfect and figuring out schedules and payments and keeping track of people,  places and things. I was done. Then, that night, I had to work. I had to do laundry. I had to worry about dinner. I had to make sure Jim and the kids were ok. Life was back to normal.

I failed again. I failed Jim. The week prior to our departure, I went over everything that needed to be packed with him and the kids. Multiple times. As a mom, I seem to repeat myself over and over again. It is annoying to everyone involved. I checked Brads’ bag. My Mom checked Frances’ bag. No one checked Jims’ bag. I (mistakenly) assumed that telling him over and over to pack sweatshirts and jackets and cool weather stuff would suffice. I was mistaken. He had shorts and t-shirts and polos. It was chilly. Thankfully, , my Mom bought him an Alaska jacket on the first day and he had that to wear each day. But, the real problem was I knew that I should check his bag. I knew it is no longer enough to remind him over and over what to do. I must go behind him and double check. The Fourth of July t-shirt I purchased him? No where to be found. Even though I had reminded him numerous times to pack it. It is such a deceptive disease. You think you can get away with letting things go but you really can’t. They sneak up on you and bite you.

So, we had a wonderful time but there were supreme heartbreaking moments. Moments that are part of our journey but normally not part of vacations.

Thank you so very much for all of the well wishes and support after my last post. I appreciate your words of encouragement and they helped me. It was a memorable journey.

Standing in front of the Mendenhall Glacier, near Juneau, Alaska. July 2014.

Standing in front of the Mendenhall Glacier, near Juneau, Alaska. July 2014.

A couple of days after our return, I was laying in bed and Jim came and sat on the edge of the bed by my feet. He started rubbing my feet and I had my eyes closed. If I let myself, it could have been years ago and all this talk about Alzheimer’s Disease could easily be a nightmare that others live. But as I tried to meld into a different time and place, I was snapped back into our reality. I heard a sniffle and then a sob. As Jim sat rubbing my soles, his soul was opening. I asked him what was wrong. “I am just so tired of not being able to remember anything.”

“Well, you remember our trip we just went on, right?”

“Yes.”

“Where did we go?”

Silence. My breathing became a bit shallow and I began to curse myself for asking. Did I really need to put him through this torture and myself as well? But I knew he knew this answer.

“I can’t remember the places.”

“But you remember the state. What state did we got to?”

“Alaska.”
“Well, that is all you need to remember.”

“I wish I had all the places I went with the IG team still. I think that one pier we were at, looking out at the water and the birds was really familiar.”

“Jim, you never went to Alaska. That was one of the main reasons we went. You went to Seattle.”

“Hmmm. It sure did look familiar, like I had been there before.”

“Well, we have lots of pictures and we will help you remember.”

“Thanks. I love you. You are a great wife and I am so lucky. Thank you for being such a good wife to me.”

Jim looking out from our balcony. July 2014.

Jim looking out from our balcony. July 2014.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (19)

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)