Archive for June, 2014

My Travel Partner

Jim and I during a rafting trip on the New River in WV, Sept. 2008. This is during our zipline fun.

Jim and I during a rafting trip on the New River in WV, Sept. 2008. This is during our zipline fun.

Soon, we are going to fulfill part of Jim’s bucket list. We are headed to Alaska.

I should be excited. I should be looking forward to this vacation….time away from work, chores, “life” in general. But I am not.

I am completely aware that there are many others who would be joyfully elated at the idea. I would have too a few years ago. But we are headed NOW to THIS place because my husband is afflicted with a terminal disease. Although I have always wanted to visit Alaska, this trip feels bittersweet and forced. It is probably our last big family vacation. I try not to think of it that way, but the truth hurts and is hard to hide. I often feel like I have to justify our expensive trip to others with this explanation.

We were going to try to go last year. Someone promised us a place to stay and airline tickets. But, for various reasons, it didn’t happen. With Alaska, your window of opportunity to visit is small. With an Alzheimer’s patient, your windows of opportunities slowly slide by in increments of immeasurable speed. Jim has declined quite a bit since last year and it is hard to keep from being upset we didn’t go when originally planned. I have only myself to blame. I knew deep down inside we should have gone then, but it was easier to put it off and wait. He would have enjoyed the trip much more and it would have been much easier for all of us.

As it stands now, Jim gets a little confused on where we are going. When we talk about it and he is reminded we are going to go find him a moose in the wild, he is happy and excited. Otherwise, there is no mention or emotion about our upcoming adventure.

The packing, the planning, the saving, the organizing of animals and schedules and everything else is squarely upon my shoulders. Boy, don’t I sound like a whiny, ungrateful person? I am grateful, I am just also sad and a little overwhelmed.

It is hard to be excited or appreciate our upcoming adventure when there is still so much to do and details to follow up on. I am hoping once we are packed, I have everything done and we are on our way, I will be able to let a sigh go and will feel a sense exhilaration.

On top of feeling deflated and somewhat regretful, there have been a few comments made that stung.

Not long after I started this blog I received a message from a woman who had cared for her husband at home along with her children. She talked about watching all of her friends travel for years and being stuck at home. Since he passed, her and her children had started taking all the vacations they couldn’t for so long. She told me how some of her “friends” made snide comments and were so jealous they couldn’t be happy for her. It was very painful for her to realize that she had friends as long as they were able to do what they wanted but when she could do as she pleased, she was alone.

I remember thinking at the time how awful. I also felt she sounded a little bitter and I never wanted to sound like that. I never wanted to complain about others. I wanted to keep the focus of my blog on our ups and downs throughout our journey and help educate. Here I am, just over a year later completely understanding how she felt. It amazes me how people can be envious of you when you have a spouse who can’t recall if they took a shower or remember what they ate for lunch. I get it though. Aren’t we jealous of people driving fancy cars, even if they are driving them alone? Aren’t we envious of the couples in beautiful homes even though they are living in separate parts of the house from each other? Aren’t we turning green when we see someone else with the newest gadget we have been coveting even if they are over drafted in their accounts?

Just this week, I mentioned to someone at work we were going to Alaska and she started telling me about her brother and his family visiting there recently.  They went on lots of excursions and saw lots of things. As she was telling me all they were doing and seeing, I kept thinking how rich they must be; how expensive all of that was. I could sense a little jealously creeping into my soul. Then she went on to tell me they had been saving for a really long time and wanted to get everything in they could because they probably will never be back again. Then, I felt like a spotlight had highlighted my own shortcomings. I fell victim to the very tendencies humans have that I loathe.  99 people can tell you how happy they are for you and be completely sincere. It is the 1 person who casts down a shadow that covers that joy and happiness and causes you to lose sight of the bright side. Why? Why can’t we ignore that naysayer and focus on the 99 smiles and cheers?

We have been saving for over three years. We have had family and friends help. We have cut corners where we can. We sold Jim’s car and used every penny for this trip.

Yet, I am judged for taking time off work. I am judged for taking a vacation and doing something wonderful with my family. I am judged for spending so much money.

It is hard to fight back without sounding petty and bitter and immature. I struggle to rise above. I struggle to stay focused on what I should be focused on; making memories with my family.  Words hurt when they are said, no matter what the circumstances.

I am not looking to be a martyr. I am not looking to sacrifice so I can brag.  I work hard. I like to play hard. Jim was the same way. I don’t see why we can’t do the same for as long as possible while he still can. Those days are numbered. Besides, I am constantly being told to enjoy him while we can. To take care of me and to get away whenever possible. Now that we are, I am made to feel like I am underserving.

I know it is hard sometimes to be happy for others. I know it is hard to bite your tongue. But, I think we ALL should try it a little more often. Myself included.

We may still be able to do some weekends away and hopefully our annual tradition of family camp, but this will be it for a family exploration trip. That is hard to think about. It is hard to celebrate a journey we will take for reasons I don’t want to believe. Traveling has always been a huge part of Jim’s life. He has been all over the world. We have always dreamt and discussed all the places we would visit someday.  Over the past few years, I have caught myself saying “when the kids get older we can go….” Or “when we retire we can visit….” Typical conversations that we had over the course of our relationship. As soon as I would start to verbalize these thoughts, I quickly remembered they will not come to fruition and it becomes an awkward realization for us both. From the first night we met we had a common interest of wanting to tour places we had yet to visit.

This disease it robbing me of my travel partner. My dreamer. My adventurer.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (20)

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)

What a Friend Jim has always been

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I recently received a wonderful, yet tear rendering e-mail from an old, dear friend of Jim’s. I love hearing from his friends. It helps me to recall who Jim was when we met. It helps me remember the man I met, fell in love with, married and still live with. In our new life together, it is often difficult for me to stop, re-focus and see the man sitting next to me was in charge of millions of dollars worth of government equipment and a star in his field in the Air Force. I know these things yet with each day he progresses into a disease that robs him of abilities, it also robs me of my clarity of him. Thank you Jorge for writing and for still loving a wonderful man and friend to us all.

These are my friends Jim and Karen.  Please read and watch as much as you can.  Jim is my buddy from the Air Force.  He was also my volleyball and basketball partner in the Air Force…we would take on anyone no matter how good they were…we always thought we were better.

Jim and I met in Bremerhaven West Germany in 1987…ever since we have been best buddies even though we were only stationed together once in our Air Force career for less than 3 years.  

Jim is also the reason I never took up racquetball, even though I thought I was a very decent racquet sport player.  The first time I stepped foot in a racquetball court he humiliated me to the point I never stepped foot in a court again.  He was that good. The year I played with him he was number 2 or 3 in the Air Force in Europe…deadly with a racquet. I wear that as a badge of honor.

Jim came to my house on Christmas Eve in Germany and asked me to help him troubleshoot a defective radar when everyone else was spending time with their families…he always thought I was a radar whiz…I never turned him down.  There we were on Christmas Eve, working on this radar in the winter cold, trying to make it better.

The first time I visited East Germany was also with Jim…19 days after the wall came down….Dec. 1989.  Jim had been stationed in Berlin and served as the best tour guide you could ever have…we had a blast. 

Years passed…we were silent friends…normal for Air Force buddies…didn’t need to talk, but when we did, we would pick up right where we left off.

At one time he was stationed at Nellis AFB, Las Vegas, NV around 1998. I was in the Mojave Dessert at a Communications Squadron at Edwards Air Force Base, California.  My Squadron was prepping for an Operational Readiness Inspection and I knew Jim had been augmenting the Inspector General’s team assessing different Air Force unit’s ability to perform their mission.  I convinced my Flight Commander to pay for Jim to come over and give us a ‘once over’ and let us know where we could improve.  His report was so comprehensive, we had no problem with the real inspection…we excelled!  Call it payback for the time I helped him troubleshoot that radar in West Germany on a Christmas Eve Day.  That’s what we did.

When he was about to get married, I was attending a specialized radar school in Biloxi, Mississippi.  He was to get married in North Carolina.  I took a ride to my friend George’s (fellow Puerto Rican and radar troop from Bremerhaven…also our protégé) house in Crestview, FL and then we drove to North Carolina for Jim’s wedding.  It was the natural thing to do…anything for Jim. We played a round of golf in the morning prior to his wedding. I was so honored to be there with Jim and Karen on this special occasion.

So yes…we were there for the official beginning of Jim’s and Karen’s lives.  I visited Jim afterwards in Vegas…even after they moved to Virginia and  I was a defense contractor.  Shortly afterwards, he was diagnosed with early onset.  Ever since, my friend George and I have been struggling with his diagnosis…nothing even remotely close to what Karen has had to endure for the last 5-6 years.

I miss my friend…but not as nearly much as Karen has missed her husband…we love you Jim…

George and Jorge with Jim and I at our wedding. Jim was so glad they were there. May 1997.

George and Jorge with Jim and I at our wedding. Jim was so glad they were there. May 1997.

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


Brad relaxing with our buddy team from South Korea at the Odyssey of the Mind Wold Finals. Thank you Michelle Carpenter for this great photo.

Brad relaxing with our buddy team from South Korea at the Odyssey of the Mind Wold Finals.
Thank you Michelle Carpenter for this great photo.

Expectations. Expectations are the root of all unhappiness. If you expect something and you don’t get it, you are disappointed. You are sad. You are let down. You are angry. You are bitter. You are many things and none of them good.

If you call a friend and leave a message; you expect a call back. If you tell someone you love them; you expect them to reciprocate. If you marry someone; you expect to grow old with them.

What if you expect more of yourself? What if you expect to be a better person, have more patience, be more understanding, be a better parent, friend, neighbor, employee, human? And then you are constantly failing to live up to your own expectations. How do you feel?

When Brad went to Iowa for the World Finals for Odyssey of the Mind last week, I think he had an expectation to win. As a competitor, that is how you think. They didn’t win first place, but honestly, I couldn’t be prouder. It was a great experience and I enjoyed the time we got to spend together. He is an awesome young man and he showed me a side of him I don’t get to see in the rush of home life. The week we spent together, walking all over the Iowa State campus is a time I will treasure for the rest of my life. I think in his own 10 year old way it was a very special time for him too.

Brad and I getting ready to fly to Iowa.  Thank you Victoria Daley for the photo.

Brad and I getting ready to fly to Iowa.
Thank you Victoria Daley for the photo.

Before we left for Iowa, I spoke with Jim about not attending Frances’ softball tournament that would be taking place while we were away. The tournament was out of town so she and our nephew would be going and Jim would stay home and take care of the dog and house and stick to his normal daily routine. He was fine with it. He said he would prefer to stay home. It was all good. But a few days later, while I was sitting in a dorm room half a country away, I was informed when it was time to pack up and leave, Jim started getting ready too. He wanted to go. It was uncomfortable for everyone involved. I felt guilty. What should I have done different? How could I expect Jim to remember he wasn’t going? Because he said he didn’t want to? I was heartbroken thinking of him feeling “stuck” or “left behind”. The last time I left him home for a night he thanked me for trusting him home alone. Maybe I was expecting the same reaction. I must try to be one step ahead, but with this cunning disease, it seems an impossible task. He didn’t remember our conversation. He didn’t remember he wanted to stay home just a few days earlier.

Remember my Morning Glory story? Guess what? Jim decided while I was at work this week to trim our hedge. Guess what? I don’t have a Morning Glory vine to bloom this year. On a positive note, there was no door slamming, no yelling and no tantrums on my end. I didn’t stop myself from asking him why he trimmed the hedge where the vine was growing when there is a whole backyard full of hedge that could be trimmed instead. (He literally only did the place where the vine grows) It is a baby step for me. I know he felt bad once I mentioned it, so I suppose my next step is to stay silent. I am not sure that will ever be possible for me. It is not in my DNA. I must come up with another way for me to deal with his great efforts that fall short in my expectations.

Expectations. I expected him to know not to cut the vine. I expected him to remember our conversation. I expect him to know to close up the bag of crackers before putting them in the cabinet. I expect him to be able to see there is standing water in the flower pot and to realize it doesn’t need more water.

These past few weeks I had jury duty. I spoke to a friend about being there all day with no phone. I asked if she would be willing to answer the usual questions Jim has for me throughout the day. She said she would be more than happy to. But she also said, “ I know you feel an obligation to do jury duty, but you have circumstances that make it ok to get out of it.”

And there you have it. As her words reverberated through my mind, I started to understand that I have been grasping at ways to keep my life ordinary.I have been struggling to keep our family “normal”. I don’t want to be a family that has extraordinary circumstances. The ironic part of my epiphany is I have never wanted to be ordinary and thrived on being a little different and thinking outside of the box. But I am not in control of our singular life, whereas before I could at least feel like I was.

Our lives are changing but I have been unable to accept these changes. I have expectations that I haven’t been able to release. Expectations of my life still being my life. My marriage still being my marriage. My husband still being my husband. Our family still being ordinary. But nothing in my life is as it once was. And will never be again.

I am trying to free myself from expectations. Those chains of desires, beliefs and whimsical daydreams keep me in a constant state of imprisonment. Imprisoned in my own mind. It may be Jim that has a disease that affects his brain, but it also has a lasting and maddening effect on mine as well.

When I release these expectations, what will I have? Who will I be? Will that mean I have accepted our fate….Jim’s fate? Does that mean I will have given up?

Should I not expect him to be able to do simple tasks around the house? And if I don’t, what will he do all day? Should I stop expecting to be able to have a home that doesn’t have rotting wood, dead flowers, dirty floors or things scattered in no particular place?

Should I not expect to be able to relax? To see friends? To go to a show or on vacation or want more out of life? What about Jim’s life? Everything is mingled and complicated and when I think too much I become so emotional and overwhelmed my mind practically shuts down and I am worthless. Then I am disappointed because I expect myself to be better and to do better. I have to be a good Mom. A good worker. A good wife. A good friend. A good housekeeper. A good cook. A good organizer. A good planner. A good person. And I am not. I am impatient and I am not always kind and I get frustrated and I sometimes want more. Sometimes I say the wrong thing or I forget something I should have remembered.

My life is such a complicated conundrum that continues day after day and year after year. I am desperately searching for a game plan to know the right way to navigate this nightmare, but there isn’t one.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (8)