My Saving Graces

Brad and Frances showing some sibling love. May 2014.

Brad and Frances showing some sibling love. May 2014.

I have been feeling a bit overwhelmed lately. There are many parts of life that can stress a person out and at any given time period those stresses can correlate together to cause anxiety and trepidation of mass proportions. I believe that I am currently smack dab in the middle of one of these rare, but inevitable collisions of foreboding uneasiness.

My body is in a constant state of tenseness. But I am not sure if it is physical tenseness and unease or mental. It is always mental, so I will go with that. But then my physical self is under attack. I am forgetting mundane things. I am constantly feeling as if I am in a rush. A rush to be somewhere. A rush to remember something I have forgotten. A rush to have a plan. A rush to be ready for whatever is coming at us next. I can’t relax. I feel a weight on my chest that doesn’t shake. Even if I am not particularly stressed at that very moment. Sometimes, while I am just driving down the road, I can feel as if a heavy load has been placed on my lungs and I am fighting the tightness that surrounds my rib cage and wondering what triggered this unnecessary reminder of my current predicament.

There have been a couple of realizations that have crept into my viewfinder recently. I have realized that at some point in the future, I will have to watch as my children cry, scream, rebel and recoil at the fact they have lost their father. Their parent. Someone who can’t be replaced. Someone to count on. Someone who was there for them from the very beginning. It dawned on me one day that I was going to be the one to hug them (or try to), to listen and to just let them cry. I was watching a movie where the mother was killed. As I watched the father and daughter on the screen, I could only see my two precious kids going through the same process. My mourning will have to wait. Yet, I understand that I have been mourning Jim since the day we first found out he was cursed with this insidious disease.

Another realization: I will have to determine when Jim can’t be left alone. Not just at home. Anywhere. Right now I sometimes drop him off with the kids to practice. He enjoys getting out of the house and loves watching them play ball. But I realized that at some point, I will be dropping him off and expecting the other parents at the field to keep an eye on him or to “watch” him. Not yet, but sometime soon or sometime in the near future. Who knows when? Then I will be forced to keep him home more, or hire someone to be with him. It all gets so complicated.

I realized that I don’t make enough to pay for someone to watch him and pay our regular bills.

I figured out that I will be alone for a very long time. I already feel alone 95% of the time. I am not a loner. I am a people person. It has been so difficult to lose my conversation companion. I am desperate for a connection, yet I have no idea when or if I will ever have one again.

I clearly see Jim progressing. Our friends see it. The kids see it. I sometimes wish we could speed the process up because it feels like torture. Pure torture. Like a single water drop hitting your forehead and then sliding across your face, slowly and unwavering and your hands tied and unable to wipe away the uncomfortable sensation. And as quickly as those thoughts enter my mind, a wave of guilt, unbelievable guilt and shame overcome me.

So, here I am. Wondering aloud how long our family will endure this Hell. How do I stop the constant state of self loathing and complete physical and mental overload I feel 24/7?

Right now, the only thing that really keeps me moving forward, getting out of bed, focusing on anything positive are Frances and Brad. What else do I have? Without them, I would have less worry and would be able to handle our situation in a much different manor. Yet, they are my saving grace. They are my reason for fighting. They are my mitigating comfort in life. It seems that I am in a constant state of capriciousness. Only time will tell how the final scene plays out.

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)

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)

The Happiest Season of ALL…

Christmas, Alzheimer's Disease. Frustrations

Jim and Frances, Christmas Eve, 2009.

Every once in a while I have a hard time finding the appropriate words to share with you. Oh, I have words forming in my mind; swirling and circulating, but they aren’t always appropriate and necessary to share. They are words that I try to push away: like sweeping wet dirt on rough concrete. The top layer moves, but you can still see the remnants after the broom passes.

I know the holidays are hard for Alzheimer’s families. I know this, yet I try to think that our holiday will be different. Not like others going through this same shitty cycle. Last year, as I was talking to a good friend, I was lamenting that I didn’t know if that would be our last “good” Christmas with Jim and that I needed to make it special and I didn’t know how he would be this year. She very sternly replied,” You don’t know what is going to happen. THIS may be the best Christmas ever and next year may be even better. You can’t sit around thinking these things because you just don’t know. You need to just enjoy this Christmas.”

Boy, was she right. Last year we had an awesome Christmas. We probably had the best one ever. It was relaxing, it was emotional, it was special. We spend every Christmas at my parents. Last year there had been a health scare between Thanksgiving and Christmas in my family and as a collective whole we ALL decided to scale back, not do as much and to enjoy each other. It was wonderful. It was exactly what my dear friend had told me it could be.

Last year Jim was having some trouble putting the greenery/lights up on our front porch. So, another awesome friend stopped by and put the decorations up for him. It was a simple gesture, but it saved Jim hours of grief and stress.

This year, I completely had forgotten and when I left for work on Monday asked Jim to put the greenery/lights up on the porch, as he has done for as long as we have been together. While I was sitting at a lunch meeting, Jim called. I answered and heard him crying.

I just can’t do it. I can’t put them up.

 Why? Why did I ask him to do this? Why do we have to decorate our house for Christmas? Why can’t I find the time to do everything? Why? Why? Why? I told him I was sorry, that I should have never asked him to do that and not to worry about it.

There really is this very fine, delicate line to walk. I have to give Jim tasks to do, yet I must make sure they are tasks he is able to do. Sometimes the “simplest” thing he did just a week ago is now something that seems foreign to him. Sometimes I forget he can’t do it. We spent years learning each other and setting our “marital chores” in place. You know what I am talking about. In every marriage there are the things one spouse does and other things the other spouse does. It is hard to take the expectations of them keeping up with their side of things off the table. On top of that, Jim is still aware of what he isn’t able to do and it is a very hard pill for him to swallow. Actually, he does a fantastic job, but I know it hurts him and it makes him sad. Sometimes when I don’t give him anything to do, he just seems to wander around our tiny house, lost in thought or trying to figure out what to do. I am not sure. But either way, he does better with a list of items he needs to get done.

He stood by as I strung the tree. He took 3 days to put the candles in our windows (no, we don’t have that big of a house). He watched Frances put the lights on the front bushes. He got confused when I asked him about wrapping paper.

Yes, I find it hard sometimes to write words that are appropriate to share with you. Not because I don’t have a lot to say. But because I am hurting. I am sad. I am depressed. I have a problem that I can’t fix. No one can. And why bitch and complain when there is no solution? Because it makes you feel better. For about 30 seconds. And then you feel bad. REALLY bad. Because you know it isn’t their fault. And then you start the cycle over. Feel Bad. Bitch. Feel ok. Feel Bad. Bitch. Feel bad about bitching.

It’s the happ, happiest season of all…….

 

Alzheimer's Disease, Younger Onset Alzheimer's Disease

Frances and Brad, Christmas Eve, 2006.

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)

Jim and Brad in Mexico, 2007

Jim and Brad in Mexico, 2007

I have been a bit down in the dumps for the past couple of days. Not really sure why.  Could be the cycle of the moon, the stars, the weather….some kind of cycle anyway.

I tend to do that; highs, lows and in-betweens. I try to keep myself regulated with exercise, but I haven’t been able to do much of that. It is on my very long “to do” list.

I spent most of the past two days sitting at a ballfield watching Frances play softball. The girl loves softball. I think that is when she is happiest. I also think all of the other pains of life disappear when she can focus solely on the game at hand. Not what happened yesterday and not what is going to happen tomorrow.  Just focusing on the here and now. I could use a little of that. Couldn’t we all? Isn’t most of life’s pain reaped from thinking of what should have been or what is going to be?

One of the things I have tried to do since Jim has started showing more and more symptoms is to make sure he spends lots of time with the kids and to make sure he teaches them as much as he can while he can. The types of things that fathers teach their kids. How to hammer a nail, how to read directions, how to start a fire, about the games of football, baseball and hockey. Just life stuff that most of us take for granted. The fact is, most of the time (there are exceptions) we were taught many of life’s “need to know” lessons by our Dads. And Jim is full of knowledge that needs to be shared with his children. Things I just am not able to teach, share or demonstrate.

Since Jim was a military man, he is very good at lots of stuff. One of the things that Jim does very well is shine shoes. This may seem trivial. I am sure there are many people that have no clue how to put polish correctly on a pair of leather shoes . But it hit me the other day as I was driving down the road (as I usually am) that Jim needs to teach this technique to Brad. I am not sure why I wasn’t as determined he teach Frances (am I sexist to my own children?) but I called him immediately and asked him to put it on his list.

Today while I was sitting at the softball games I remembered the shoe shining request. I called Jim and asked him if he could do this with Brad before they had to leave for baseball practice. No problem. Except a 9 year old boy does not want to stop playing with his friends outside to come in and learn how to polish some shoes. I get it. I really do. But I also feel this immense pressure of time and uncertainty.

There is no guarantee for any us for tomorrow. How can I make sure as many of these life lessons will be worked into our daily routines at the most convenient time? When is it appropriate to make special arrangements and to push the lessons ahead of schedule?

Mexico, 2007

Mexico, 2007

It happened. Jim and Brad had some Father and son time. I am not completely sure but I have been told Brad got the gist of the task and has a pretty good idea of how to spit shine a pair of leather shoes.

I don’t like playing the “you need to learn from your Dad while you can because we don’t know how long we have” card with the kids. It is almost cruel and it is almost like blackmail. Or that is how I feel.  I do it sparingly and for the right reasons, but it is still pushing an agenda and reminding them of what is lying in wait for our family.

I would love to naturally let the progression of life take over and let life lessons happen in the time and fashion they normally would. But I don’t feel like I can. I feel like I will have regrets. I will think that I should have done more, tried harder, pushed more and thought to make sure things were done just so. It may seem like I put a lot of pressure on myself, but I think it is normal to want your children to learn and grow from their Dad. Especially if their Dad is an exceptional man with lots to share. Especially if he is encouraged to share said knowledge.

My heart is breaking. Every day. Sometimes it is overwhelming and sometimes it is manageable. Either way, it is the same really. It is for the same reason with the same ending and pretty much the same in between. How do I keep that “in between” from completely screwing up our kids? How do I keep that “in between” from completely screwing me up? How do I protect Jim? There are so many facets to think of and plan for. Who can really keep up and keep sane?

Jim and Brad in Mexico, 2007.

Jim and Brad in Mexico, 2007.

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)

Need a good book?

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This morning I was working at the dining room table as Brad was making his lunch. As I worked, he organized his crackers and carrots and we proceeded to discuss a wide range of topics.

Yesterday was election day and as always, we voted. Another perk of our neighborhood is the fact we can walk to our polling station and it doubles as our public library. Jim, Brad and I had driven over so I could leave from there to go to work and they could walk home. I love walking in the Fall with all of the leaves on the ground and swirling in the air as they release themselves from the branches. But I digress….. Jim and Brad stayed for a bit at the library and Brad picked out a movie on the demise of the Indian Tigers and 4 books. One of the books, The Disease Book; A Kids’ Guide, I found very telling. Did Brad choose this book to learn more about Alzheimer’s Disease or is he all of a sudden interested in Schizophrenia and Tonsillitis? A small inkling of worry had crept into my mind last night when I had gotten home late and seen the book sitting on the table.  I had meant to take a quick peek inside the covers, but I started watching results from the election and never did.

Back to this morning. Brad tells me about this book and asks me to read the part about Alzheimer’s Disease. It is a short bit under “Disorders of the Nervous System”.  I start to read without proofreading first. Smart Karen,really smart. “Alzheimer’s disease has been called the cruelest disease that humans have ever faced, for it gradually destroys the brain. Simple bouts of forgetfulness may be the beginning, but the ending is always the same.”

I read the very first sentence and stopped. Suddenly, I had this terrible mommy moment; knot in my stomach, light headed and a small bout of queasiness. I quickly decided that we did not need to read anymore. Brad seemed a little confused on why I stopped.  All of a sudden we were running a late and he needed to finish his lunch and I needed to get my work done.

THIS IS A KIDS BOOK. Really?

I think I would have rather read the parts on STDs or PMS with him.

Sometimes I am just not sure I am ready for this. For all of this that we, as a family, are going to go through. Obviously, my 9 year old son is looking for information and answers. I am just not wanting to hear the answers myself, let alone speak them out loud to him.

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)

Fast and Hard

Jim and his radar in Columbia, 1998

Jim and his radar in Columbia, 1998

Sometimes, when you least expect it, sadness and grief overcome you. I think this happens when someone you love dies. I am finding out the hard way that this also happens when someone you love has a disease that steals them from you bit by bit.

A few days ago I needed to go to the base for something. Jim is retired Air Force, so we still have base privileges.  I was by myself, in between meetings for work. It was a beautiful day, there were good tunes on my radio and I had no complaints.

It has been a few years since I have gone on the base and I wasn’t sure where I was going. I made it through the base gate just fine. Made it to the building I needed to with no problems. But as I was driving away, something hit me. An invisible phenomenon hit me hard and hit me fast. Out of nowhere. I couldn’t control the tears or stop the upheaval that had materialized inside of me. This unprovoked inner turmoil wasn’t even triggered by a song. I became completely enveloped in a sadness that comes from a subconscious I usually keep tucked away. The years of living on a base with Jim, seeing him in his uniform, watching him take so much pride in his job, his service to our country, his pure absorption of all things military and my complete lack of adherence to just about anything military were all swarming through my mind. Flashes of Jim, young, handsome, stoic, so sure of himself and so able were seriatim through my mind. It cut me into mush. I got short of breath. I was taken by surprise with this sudden burst of emotion. Emotion I was unable to contain.

Those unvolunteered flashbacks caused me to think of Jim. My Jim. The Jim I met, fell in love with, started a family with and thought I would grow old with. The Jim that people respected and looked up to. The Jim that took charge at work.  The Jim who coordinated care for millions of dollars worth of equipment.  And now it is his care that needs some coordinating. And that care will be augmented with each year we stumble through. I could see so clearly his smile and youth. His clear eyes and complete confidence as he walked through my memories.

While these flashbacks ran through my brain, it hit me how young and innocent and full of the future we were. Like most married couples, we expected to have a family, work hard, struggle for a few years with finances and teenage angst, then have our golden years to come back full circle and enjoy each other and the memories we could cherish. All we had to do was work hard at our marriage, our family and our life together.

It was another reminder that I will have those memories. Jim will not. I will remember him and our love and our early years together and our dreams of travel and grandkids and the comforting feeling of home whenever I was in his presence.

Intermingled with the images of Jim were pains of regret. Regret in my lack of interest in his military life. My inability to appreciate his extreme structure and just how successful and good he was at being a soldier. Why couldn’t I take it all in and see the bigger picture? I questioned all the rules and regulations too much. I resented the fact he was always traveling and we couldn’t choose where to live. I should have relaxed and let our life unfold and enjoy it while I could.

I recognize the fact that none of us are guaranteed a day. None of us know when our time is up. But one of the things that separates humans from any other animal on earth is our ability to remember our past, plan for our future and dream of things to come.

Ouch. I am a dreamer. I am a realist and I am a dreamer. I dream of many things. One of the things I dream is Jim and I, old, cherishing our family and retelling our stories of the kids and friends through the years. What I can’t remember, he will be able to recall with certainty. Why are those things being stripped from Jim when he is such a remarkable and great man?

Yes, it hurts. It is emotional draining. It is hard to imagine. And yet, it is here. With me 24/7, unrelenting and uncompromising.

At the Grand Canyon. 1998.

At the Grand Canyon. 1998.

By now my mascara was running and I was overwhelmed with grief. Knowing the man I was picturing in my mind and the visions from our past would always be in our past simply hurt. Hurt and bittersweet. The love and the times I can recall are wonderful times. But it hurts to know the dreams we shared and the fact they will not becoming true. That makes our love story and my memories bittersweet.

As I kept driving, I simply re-focused on my upcoming meeting and in a flash, my inner turmoil and tears evaporated. If I could only make all of my problems disappear as quickly and easily.

Our honeymoon. Puerta Vallarta Mexico. May 1997.

Our honeymoon. Puerta Vallarta Mexico. May 1997.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (9)

Let the best team win.

 

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I have tears streaming down my face. Not because I am frustrated, upset with Jim or the kids.

Because I feel the support and love and caring of others.

Tonight I was actually just wasting time. Time I usually don’t have. I was scrolling through Facebook, catching up on absolutely nothing important. It was a guilty moment of pleasure that I seldom get these days.

And I saw a post that went to my core. A post that caught me off guard.

Flashback a few days. A couple of mom’s from Brad’s baseball team, which just came together in August, told me they wanted to do a team for the upcoming Walk to End Alzheimer’s. They asked when it was. They said they wanted the boys to be involved because we didn’t have games that weekend. They said they would look into it. I told them I would send them some info. (I haven’t).

Flash forward to tonight. There was a brand new team to our local walk. Brad’s team. 10 and under. Mom’s I know and Mom’s I don’t really know. People I have just met.

People who have lives. Busy lives just like mine with multiple kids doing multiple activities. Kids on teams that are selling stuff to raise money to participate in tournaments. To have a weekend off from games is a luxury. Why would they commit themselves to ANOTHER event? And one they have to FUNDRAISE for? Between schools and ball teams, I feel like I all do is ask people to buy stuff, and then I have my requests for donations to the Alzheimer’s Association. I have a team for the Walk to End Alzheimer’s. A team that I have not done one thing with. They are friends that support me no matter what and who are not getting any guidance from their leader. They are on their own. I had just been thinking earlier today that I need to send out an e-mail. I need to get on the ball and raise some money and get it together.

And, instead. I trolled through Facebook for a good 30 minutes. Mind numbing. At 10 o’clock at night.  Awake by myself. And then I saw the post that changed my whole day. I had had a good day. Now I have had a great day. And so have you. Because…

As my Dad keeps telling me, “there are good, kind, caring people out there. You are finding them.”

Yes. I am. When I find them, I am always stunned and amazed. And then the tears come. But it is a good cry. Not a painful cry. Not a “what the Hell am I going to do” cry. Not a feel sorry for myself cry. Not a feel sorry for the kids cry. These are tears of pure amazement and joy.

I wanted to donate to them. And I have a team that I am trying to raise money for. But I don’t mind if they beat my team. It all goes in the same pot, and I kind of think I like the idea of 10 year old baseball players raising the most money for our walk. I don’t mind losing to a bunch of boys. May the best team win….

Click here to donate.

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

Can’t Stop the Leaves….

Jim playing softball at family camp.

Jim playing softball at family camp.

 

We are back from vacation and “normal” life begins again. Family camp was just right. I was so grateful, thankful and happy to have my parents with us for a full week. That doesn’t happen often enough and I am finally at the stage in my life that I actually appreciate the time  I can spend with them.

Why can’t I appreciate the time I get to spend with Jim? I want to. I know I should. I think I do in my own way but appreciating my time with him means focusing on the fact he is going to get worse and realizing I don’t have all the time I want with him. Why don’t we ALWAYS appreciate the time we have with those we care so much about? Why can’t we see how special all these moments collectively put together are as we are living them? We always take for granted those that mean the most to us; the ones we always expect to be there. One day, whether we like it or not, either they won’t be there or we won’t be there. What happens when the person you want to be there is with you physically, but mentally they are a little different? A little “off”? How do we relate to someone that looks healthy and the same, but can not figure out how to put batteries in a flashlight?

Yes, we had a wonderful family vacation. It was so good to see our friends at camp. It was so good to let the kids have some freedom and independence. It was so good to see Jim in his element; playing volleyball, basketball, soccer, softball and hockey. Honestly, I didn’t spend a lot of time with him. He was happy to play his sports and read a little. It was like nothing was wrong.

We tried playing a card game with him. He was having difficulty remembering the rules and how to play and what was going on. So the next night when we played, he abstained. I was hesitant….stop playing myself and just sit and watch with him or enjoy myself and play with my parents and friends? I played and felt torn the whole time. It is tremendously sad to watch him walk around,  searching for something he can’t seem to find.

JIm rafting the Yough River.

JIm rafting the Yough River.

We were able to go rafting. Years ago Jim and I rafted the New River in West Virginia. It was a blast. We both loved it and vowed to go again. This time we did the trip on less thrilling water, but he seemed confused on when he should paddle and what to do. I am afraid we won’t be going back again. That hurts. For so many reasons.

Something else happened the night we returned home that many caregivers deal with on a daily basis. I know this. I am aware that it is typical. I realize it is a symptom. But knowing something is coming and then actually having it happen are two different things. And when it does finally happen, it jabs my gut. It depresses me. It brings that reality of needing to appreciate our time together front and center.

Jim jogging around the lake.

Jim jogging around the lake.

I was up late working on our mound of laundry. Jim had gone upstairs to go to sleep hours before. When I finally went upstairs to go to bed, Jim was standing in Brad’s doorway.

“Jim, what are you doing?”

“I am going to bed.”

“No, that is Brad’s room.”

“Oh.”

I took the basket of clothes I was carrying to my room. When I returned, he was still standing in the doorway.

“Jim, what are you doing?”

“Going to bed.”

“Our bedroom is over here.” I turned the light on in our room and had him come look. He didn’t argue, he didn’t really say anything. He just simply went to bed.  I was emotionally unhinged. Another sign. Another stage. Another symptom. Another progression. There is nothing I can do to stop it. I don’t want to watch this brilliant, witty, athletic, handsome, loving, caring, dedicated, hardworking, fabulous man turn into something that I don’t recognize.

Like the leaves that turn each Fall. One day they are green. The next they have started to turn a little red or yellow or brown. Then one day you wake to a glory of colors and it looks brilliant. But it is a sign that the leaves are about to fall, billowing in the wind, eventually falling to the ground. There is nothing you can do to stop nature from it’s glorious cycle.

Knowing there is nothing I can do doesn’t make any of this easier. Knowing what is coming definitely does not make any of this easier. Seeing my husband confused, detached from conversations and void of emotions is already old. And our journey has really just begun….

Jim and Frances at Family Camp, Aug. 2013.

Jim and Frances at Family Camp, Aug. 2013.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized and have Comments (2)

Our favorite vacation every year.

 

The lake at camp.

The lake at camp.

After my last post that was so emotional, raw and REAL, I wanted to just fill you in on our week. WE ARE ON VACATION! Yes. A real vacation.

Every year for the past 4 years we have gone to family camp. The first year we travelled to a wonderful camp in Western Massachusetts. We all loved it. But it was a 12 hour drive. Then we found out about a very similar camp also run by the YMCA and it was only 6 hours away in Pennsylvania. So, we went and loved it too. We go the same week every year, so the kids have friends they reconnect with and so do Jim and I.

This year is even more special. My parents are joining us. I am not only excited about being away from work, the house, and life for a week, but I am excited about spending this downtime with my mom and dad. There is no cell phone reception, no tv’s and no internet. Just a beautiful lake, arts and crafts, a zip line, hiking trails, biking trails, volleyball, basketball, kayaking, and so much more.

In the mornings the kids go off with counselors and do activities with their friends. The grown ups get to go for trail rides, spin class, sailing or whatever they want. Then in the afternoons we can either hang as a family or hang with friends. Most of the time we hang with friends.

It has been great to see the excitement on the kids’ faces and hear them discuss all the stuff they are going to do with their cohorts. Building forts, playing games, swimming, making bracelets and just having a grand time doing a little of this and a little of that. Each evening there are activities as well.

Frances on a hike while at our first family camp in 2010.

Frances on a hike while at our first family camp in 2010.

I remember the first year we went to the camp in Massachusetts, I confided in a single mom I became friendly with that we were having Jim tested and thought he might have Younger Onset Alzheimer’s Disease. At that time, it was really  so inconsistent and fleeting and hard to see his symptoms easily. I also remember last year being so frustrated and angry as we were packing to leave. Jim normally would be the one taking charge of the bike rack and the luggage. But he was confused and unable to manage the bikes, the rack or the carrier to go on top of the van. I was sweating and just wanting to get on the road. Finally I just took the carrier, threw it into the back of the van instead of on top and attached the rack, loaded up the bikes and took off. But not before I had let anyone within ear shot know how I felt. Ugghhh. Another one of those unproud moments.

This year I don’t expect much. It is still frustrating when he takes things and puts them in various places that make it difficult to find and when he can’t really help with all he used to. But I am mentally prepared. I am knowing that he can’t and so I know I must.

Last year Jim had difficulties keeping up with when his volleyball games were. I am ready this year. I am bringing him a little pad of paper to write down all of  the things he is wanting to do and scheduled to do. I am so glad the kids get to see him in his element; playing sports and having fun.

We are at Family Camp. As a family. Together. Making memories. Keeping a tradition alive. Enjoying us. Enjoying life. Enjoying the moment.

The Flight 93 Memorial is about 45 minutes away so we try to make sure we go each year.

The Flight 93 Memorial is about 45 minutes away so we try to make sure we go each year.

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

A New Treatment…

Jim getting fitted for his "helmet" to use in the hyperbaric chamber. Aug. 2013

Jim getting fitted for his “helmet” to use in the hyperbaric chamber. Aug. 2013

Last week Jim started a new treatment. Hyperbaric Oxygen Therapy.

To explain it best, I have copied a description from the Mayo Clinic website:

Hyperbaric oxygen therapy involves breathing pure oxygen in a pressurized room. Hyperbaric oxygen therapy is a well-established treatment for decompression sickness, a hazard of scuba diving. Other conditions treated with hyperbaric oxygen therapy include serious infections, bubbles of air in your blood vessels, and wounds that won’t heal as a result of diabetes or radiation injury.

In a hyperbaric oxygen therapy room, the air pressure is raised up to three times higher than normal air pressure. Under these conditions, your lungs can gather up to three times more oxygen than would be possible breathing pure oxygen at normal air pressure.

Your blood carries this oxygen throughout your body, stimulating the release of substances called growth factors and stem cells, which promote healing.

Jim during the treatment session.

Jim during the treatment session.

 There is no real “proof” anywhere that this treatment will heal Jim of his Alzheimer’s.  But, we have been fortunate that a local healing center, Renova Wellness, heard our story and asked us if we would like to try a new approach. What do we have to lose? As we have been told by every doctor, every article, every news story and by every bit of research we have done, there is NO CURE.
So, Jim has agreed wholeheartedly to try this. He will have to go everyday for long periods of time. Each session is 90 minutes and they suggest starting with 20 days, take a week off, then another 20 days. They have had some patients with dementia that have recovered enough to stop asking the same questions over and over and have stopped repeating themselves. We have not been promised a cure. We have not been told that Jim will go back to his old self. But, we are hoping that these treatments will help stave off the disease, give us more time together as a family and possibly help with his short term memory that seems to be failing more often than not.

The Hyperbaric Chamber.

The Hyperbaric Chamber.

It is really sad how desperate and willing to grasp at anything that gives the slightest hope of some sort of reprieve from the steady decline a family can be. Like so many, we are that desperate. We want Jim to have time with the kids. We want them to have time with him; while he is still him.
I remember quite clearly going through all of the testing when we were first trying to figure out what exactly was wrong with Jim. It got to the point where I was disappointed it wasn’t a stroke, a brain tumor, depression or one of the myriad of things we eventually ruled out. All of those have either a treatment, a definitive diagnosis, a game plan of what to do and very seldom result in a possible 10 year decline of all mental skills associated with being a Dad, a friend, a lover, a husband, or a functioning member of society. Please do not misunderstand me, I do not think having a stroke or brain tumor is a cake walk. I am just relating how desperate and warped your views and desires can become as you slowly start to understand the daunting undertaking you and your family are about to begin.
Jim is still on his medication. He is still exercising. He has stopped reading. I am thinking I should try to find some short stories. Long novels are difficult and he was having to take notes so he could remember what he had read. He just finished his follow up testing at the NIH for the diagnostic study. We are participating in our Walk to End Alzheimer’s. We are gearing up for our family vacation next week….FAMILY CAMP. We are ALL very excited. We go the same week every year….
So for the most part, Jim is still Jim. Except when he isn’t. While we were at the NIH, we ate lunch in their cafeteria. I was in line for pizza and he went over to get a sandwich. I was watching to make sure he found his way and he seemed fine. When I walked over and stood with him as he waited, one of the ladies behind the counter asked him if he would like something. He said he would like a Reuben. The second lady behind the counter looked up and said, “I already helped him.”
Jim replied,”No, I haven’t ordered yet.” She argued back she had helped him. He had already ordered. I asked him if he had ordered a sandwich but just hadn’t gotten it yet. He was adamant he hadn’t been helped yet, but at the same time, I could tell he was a little confused and off.
Sure enough, she pulled his Reuben out of the oven and wrapped it up for him. There were no words said by either of us. I didn’t know what to say, since my heart was again breaking and I was no longer hungry. I have no idea what he was thinking….he almost didn’t seem to really understand and realize what happened. But I wasn’t mad or frustrated with him. It is becoming our new normal.
So, if the hyperbaric chamber can help Jim remember what he has ordered, I’ll take it.  If it will help him recall what positions the kids played in their games and if they got hits and runs and outs, I will take it. If breathing in some pure oxygen will give me a little more time with him, I will take it.
Jim and I were able to enjoy a nice lunch in Bethesda, MD after finishing up at the NIH.

Jim and I were able to enjoy a nice lunch in Bethesda, MD after finishing up at the NIH.

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)