We are a TEAM!

 

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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)

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)

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)

Expectations

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)

Ups and Downs

Supporting Brad at the state competition. April 2014.

Supporting Brad at the state competition. April 2014.

It is time! Brad’s Odyssey of the Mind team is headed to Ames, Iowa to compete in the World competition. I am so, so lucky I was able to take off  work and go with him.. I always seem to spend more time with Frances for some reason or another and it makes me so happy to get to share this grand experience with him.

Of course a huge dilemma was leaving Frances and Jim for 6 days with no transportation. As luck would have it, my awesome nephew just finished his first year of college and was not only available, but willing to come stay with them and help. Again, our lives are blessed by those we have in it.

Another huge stressor is getting everything ready. I am in the process of fixing some sauce to have ready in the refrigerator. I will put dinner in the crock pot before we head to the airport. I have cleaned, shopped, asked friends to be on call and organized the schedule for the rest of the week. Naturally Frances has a softball tournament out of town while we are away and thankfully (again) some parents have stepped up to offer help however need be.

Tonight while I was trying to pack, I noticed some clothes that were in the dirty laundry earlier in the day now hung up in our room. I did 3 loads today so I was familiar with what still needed to be washed. There was a not washed linen skirt, all jacked up on a hangar dangling in the closet door space. So, I start investigating, which I have come to realize, albeit too late most of the time, that I should just stop doing. Yes, dirty clothes were put away with the clean clothes and wet towels were thrown on top of some of the clothes left in a basket and then another basket was put on top of a basket of clothes as well. Everything dealing with our laundry was completely awry.

Then to top off the day, I was putting groceries away and one of the shelves on the door of our fridge literally broke when I put something in it. I quickly emptied the contents while putting the rest of the food away and fixed dinner. It wasn’t until after dinner I opened the door and saw the empty shelf back in the fridge, waiting for someone else to put a bottle in it to only fall on the floor. And yes, Jim was standing right there when it broke in the first place. He had no recollection.

It has been that kind of day. My bicycle tires were flat and I couldn’t get the air pump to work to put air in them. We had windows open with the air conditioning on. A block of cheese was put away with the wrapper ripped apart so that the cheese was now a much darker orange and hard as nails. The dog was left alone and grabbed a brand new bag of bagels off the counter and ripped them open. It was just one thing after another. The relatively new can opener no longer works. The flowers that were supposed to be watered were drooping bone dry. I was ready to scream!

But in the quiet of the night, I sit alone, and feel calm. I feel like it is all going to be ok. I feel cared for and supported. I realize all of the little things that go wrong make room for the big things to go right. All it took was a quick phone call from a friend wanting to touch base before we left tomorrow.

I am telling you, a quick note, phone call, lunch, drive by “hello”, whatever, makes a huge difference to someone. You may think they are living a perfect life. You may know the struggles they endure. Either way, we ALL need to know others care. We all need to feel like our worst days are better than someone else’s.

Some of you might be wondering why my fabulous parents, who always come to help, aren’t coming to help this time. Well, good question. They are driving to Iowa and coming to cheer Brad and his team on. How lucky am I? I have a nephew willing to help. Parents willing to help. Friends helping. What do I have to complain about? Nothing. Now if I can just get a new fridge shelf, working can opener, fix my tires and figure out a new system for the laundry, I would be the happiest girl in the world.

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

Change and Enlightenment

life changing quotes

Another first. Another heartbreaking moment I had to take in and keep in until I was alone. I must say that a talent which has always eluded me is becoming second nature….controlling my emotions and my ability to mask my emotions. I am not sure if this is a good thing, but it is a change and I will use it for the betterment of Jim. It is imperative that I not let him see each and every time I hurt or that I feel lonely or angry or frustrated. In my past, I have always had a bit of pride in the fact I am an open book. In a world full of games and hypocrites, I wanted to stand out as a person that you knew was telling it like it is and that you knew, really knew as a friend. Whether you liked me or not, there were no surprises.

Who is the Karen that hides her feelings and emotions? Who is the Karen that denies the pain and the desires?

I wore a shirt to work that had ties on the sleeves, right at the elbow. I couldn’t tie them so I asked Jim to. He couldn’t either. It wasn’t that he had forgotten how to tie a bow, he just couldn’t get his strong hands to be nimble enough to tie a bow.

I told him not to worry about it, no big deal. I needed to get out the door anyway. So I walked out with tan strings hanging down my arms and tears stinging my eyes. And then I sat in my vehicle and felt the sadness and grief wash over my body. I could feel the weight of realization crushing me. The immense sorrow filled me completely until I realized I needed to work and I turned on the radio, put the van in drive and began my day.

This is a tough, tough situation. Tough for me. Tough for Jim. Tough for the kids…..

I must focus on whatever is immediately at hand. I no longer plan past the day I am living in. I only deal with the immediate hours coming up . It is a coping mechanism that is unusual for me. I still catch myself trying to worry about something days away and I am somehow forced to re-focus on my current state of affairs.

I sometimes wonder what people think of Jim when they first meet him. Do they just think he is a little quirky? Do they think he is aloof and doesn’t care? I want to scream: “HE HAS ALZHEIMER’S AND WOULD NORMALLY NOT BE LIKE THIS!!!” What would a stranger think if he watched a grown man not be able to tie a simple bow? What does that parent at the ball field think when Jim makes a comment that really just doesn’t make much sense? I need a film of Jim 10 years ago to walk around showing off what a magnificent human being he was. He is. Just in a different way.

As upset as I get, I know we are blessed with so much. Inevitably something comes up that reminds me he is fading away from me, from us, which makes it hard to find those blessings and be grateful. But, then, life will happen that reminds me.

A recent reminder came in the form of timing. Timing is always everything.

This past weekend we had MANY things going on. I had to prioritize and plan. Everything about our weekend was scheduled down to a “T”. First, we would drive 4 hours on Friday afternoon to Brad’s Odyssey of the Mind competition, which was scheduled to take place early Saturday morning. Immediately after he was done, we would load back up and head to my hometown in Eastern NC for a 5 hour drive. We would make it just in time for my father’s induction in the local sports hall of fame. Then, Sunday morning, we would again be up bright and early to head the four hours back home, with stops along the way for softball and baseball games. Everything was timed perfectly and literally along the route we would be taking to get home anyway. It was a schedule that had been meticulously honed down and worked out with a lot of stress and decision making.

Everything was going as planned until Saturday morning when we arrived for the Odyssey of the Mind competition. The prop truck, which held the backdrop, costumes and set, was lost and would not be there in time. The team was re-scheduled for early afternoon. This one driver getting lost was putting a huge kink in everything that followed for our family  the rest of the weekend. All of the plans that I had meticulously worked out were immediately vaporized by a complete stranger.

At first I was mad. I was angry that I would now have to leave Brad behind or miss my Dad’s special night. I would miss his performance. I had been so grateful the two major events planned on the same day 5 hours apart were going to be doable so I didn’t have to choose between my Dad and my son and now it was looking like that wasn’t going to be the case after all. So I chewed on the new situation for a bit. Then it all became clear. I am not in control. I was trying to control all of the events and driving and circumstances. But I can’t control everything. The sooner I learn this lesson, the sooner I will be able to accept our situation. And that will be the sooner I can learn to relax and let things go.

So, I took a step back, realized this was happening whether I liked it or not and moved on. I was able to let Brad stay without us, be there for my Dad and get Frances to softball. Brad ended up missing his ball games, but we were all ok with that. Life goes on. There will be more games next weekend.

The one really sad part for me was missing the very exciting moment when the winners were announced for Odyssey of the Mind. I am proud to share that I missed hearing my son’s team called for first place. They will be traveling to Iowa the end of May to represent Virginia in the world competition, competing against 860 other teams from around the globe.

Now a whole new set of priorities, planning, scheduling, fundraising and stressing begins….

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (3)

Pain with a side of happiness

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Part of our journey with Alzheimer’s Disease is accepting help. Damn, it is hard. Help with not just financial things, but emotional needs and just relying on my friends to help me with the most mundane decisions. Decisions that I once had a partner 24/7 to throw things at and see what stuck and what didn’t. Decisions I could do blindfolded with one arm tied behind my back while falling asleep. Now, just something as simple as what to fix for dinner or which load of laundry to start next can be ginormous.

I really miss having that partner; someone that knows my history, my family, my friends, my desires and my dreams. Actually, not MY desires and dreams, OUR desires and dreams. Someone that has the same goals in life and we would work on figuring out how to make our family decisions based on reaching our goals together. Together. Now, I often feel alone and my goals have changed immensely. New goals that are intertwined with something out of my control and right now beyond my reach. They are more confounding short term and much more solitary long term.

I just returned from a very enjoyable trip to San Diego. I LOVE San Diego and Southern California. I was able to go because I was asked to speak at the American Society on Aging 2014 Aging in America Conference. I first got to visit with a very dear friend of mine, Jen. We met almost 20 years ago while we both were living in Las Vegas. She has 3 beautiful daughters and a great husband. They now own Serious Cycling,  a fabulous bicycle shop and graciously gave me a tour. Somehow, we had managed to let over 7 years pass without seeing each other. Thanks to this opportunity to visit in the area, we were able to have a quick but very satisfying visit. I had forgotten how much we had shared through the years. I had forgotten how much Jim and I had enjoyed our visits with them. But over the course of a few hours, wonderful memories came flooding back and they were so bittersweet. I had forgotten our camping trip to San Onofre Beach (Jen is the one who took the picture of Jim and me on the beach that is on the Missing Jim Facebook page) While we were chatting, her husband mentioned what a fun trip that was. Bam! It felt like I was hit in the gut. Yes, it was a great trip. WE had been a fun couple. WE had plans to have more fun trips. WE wanted to do that again someday. In an instant, I was elated that someone had thought doing a camping trip with us was a fun event and so stricken with sadness that it would be wasted breathe to suggest doing it again.

Jen and I together again! March 2014

Jen and I together again! March 2014

While Jen helped her daughters with homework, I sat outside on the back porch swing, (after laying on her luscious green grass) enjoying the Southern California Sunshine and warm gentle breezes while gazing at their pool. The pool that Jim played with the kids so much in during our numerous visits. The adorable play house that we had decided Jim should try to replicate back at our home. The ping pong table where they had first taught us to play Beer Pong (long before it became a fad) The Jacuzzi we had sat in for hours, enjoying the stars, the friendship, great conversations and thinking that our lives were perfect and would be that way forever.  I sat in that swing and for the first time in a very long time had an opportunity to really reminisce about our life: years ago. Not our life now or our life in recent memory. It had been so long since we had been there that these memories are not part of any thoughts of Alzheimer’s Disease. When Jim and I were visiting Southern California and enjoying ourselves, Alzheimer’s Disease was not in our regular vocabulary or on our radar. I have been so caught up and focused in our day to day life and trying to figure out our future, I hadn’t really thought about our past, our FUN past.

I believe that no matter what struggles you face in life, you get overwhelmed and downtrodden with burdens and it becomes nearly impossible to see a silver lining. It is impossible to remember happier times while remaining in your stagnant environment. It is invariably unfeasible to see a brighter future while enduring constant darkness and pain. It is a struggle, but during this thing called life, we all must keep pushing forward while keeping close the wonderful memories we have to sustain us thus far.

So it was because of Jim’s misfortune that I was lucky enough to visit my friend and get a respite from my current world with Jim. The irony is suffocating.

There have been many instances where my life has been filled with wonderful, enlightening gifts recently due to our circumstances. There is no question that I would rather have Jim back to his old healthy and happy self,  but if we must endure the pain and agony, at least we also have bits of sunshine and comfort along the way.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (10)

Let’s Park the Car

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Oh boy. This is a follow up to a previous post about Jim losing the car keys when he took the dog for a walk….

Today I received an e-mail from a reader. She let me know her child attends the elementary church school  located at the end of our street. She mentioned a message sent out today about a set of keys that were found on the corner and were at the church office. I knew as soon as I read the message that those were Jim’s keys. And yes,  they were indeed Jim’s keys. Complete with the little key fob to help us find them when they are lost.

I was at once elated to have found these keys with the help of someone that had read my words and put two and two together. She mentioned in her message that she often sees him walking by with the dog. Are you getting the same sense of community that I am getting? I feel so protected and looked after. Something I don’t feel with my husband, for obvious reasons.

I was also completely confused and sad. How was it Jim was so certain the keys had been in the trashcan? He continues to say that he heard it beeping when he pressed the button. But obviously and thankfully that wasn’t the case.

Now, on to the elephant in the room….Jim driving. We have limited his driving to close places and familiar roads. But this decision is mine to make. Remember, he was tested last July and passed the four hour test. But I have seen his decline, our friends have seen his decline and our children have seen his decline. He is not the same man that took that lengthy and thorough examination last year.

It is easy to say, ”He shouldn’t be driving, so just don’t let him drive.” There are many ramifications that come along with this decision. The least of which is helping chauffer the children to and from, helping with grocery shopping, running quick errands and providing a back up when I am not home and Frances misses the bus or needs to be picked up from school. The main thought is the deprivation from this point forward of independence for Jim. Without the ability to grab a set of keys, start the ignition and put the car in gear, Jim is completely and 100% dependent on someone else to get him anywhere. I wouldn’t trust him to navigate the bus system. I suppose he could take a cab, but again, there is a bit of dependency on someone else to provide the transportation. This is a weighty issue and I know the answer, but I really don’t want to be the one to pull the trigger.

Thankfully, Jim is a kind and gentle soul. He goes along easily (99% of the time) with my decisions and accepts that I am making the best decisions for our family. I have discussed his driving, or not driving, with him and he simply said, “ok.” Yes, I do know how lucky I am. Yes, I know how many caregivers go through torturous times with taking the keys from a loved one. I am lucky. But then again, not so much.

As if the emotional roller coaster I have been on the past couple of months hasn’t been enough, I now am at that crossroads I have been dreading for a long time. With our very hectic and busy schedules, only having one driver is going to make things much more complicated. I have known this day was coming, but it was always sometime in the future and I was trying to focus on the “right now” moments.

I would rather take his car keys from him a day too early than a day too late. That is the only solace I can keep repeating to myself to help me stay focused and true to what this decision is being based on.

Again, this life sucks. This disease, sucks. This all just really sucks. More for Jim than for me. And he seems to take it all in stride. Thankfully, that is definitely a bright spot in such gloom and doom. He has a great attitude and continues to help as much as he can and shows his family how grateful he is for our love.

As I struggle with this judgement call and the upcoming consequences of such a monumental decision, I must steadfastly focus on those positives and learn to appreciate those small blessings.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (21)

Ski Trip

Younger Onset Alzheimer's Disease, dementia, skiing

Frances, our new teenager.

We celebrated a spectacular 13th birthday this past weekend. Frances  had requested we go skiing. Skiing. A very expensive hobby. As fate would have it, after a series of articles were published about our family last fall, a kind, giving and very generous stranger contacted us through his bank and “donated” money for us to go away for a weekend as a family. So, I kept the money socked away for a few months and used that to cover the lift tickets, ski rentals, gas and food.  We were also fortunate enough to have a friend lend us a place to stay and so we were able to enjoy a beautiful family mini- vacation full of fun and white powder. Frances had the birthday she was hoping for and we all got respite from the normal daily grind.

Frances has a friend that also loves skiing and her family joined us, as did my parents. So, it was a special time indeed.

Not only was this a fun trip for Frances, but Jim also got to ski again. He loves skiing. He has skied in Europe and different parts of the US. He is a natural athlete and can ski quite well. I, on the other hand, stick to the slopes made for beginners, fall a few times and then I am happy to call it a day and sit by a warm fire.

I thought this would be a good time for Jim and Frances to have some quality Father/Daughter time. And they did. But Jim wasn’t able to coordinate all of the equipment well. He lost the brand new pair of goggles I had just bought him. He literally lost $10 while getting organized in our room (we tore that place apart looking and never could locate it. Where is Nancy Drew when you need her? The Case of the Missing Ten Dollar Bill.) He had a tremendously hard time putting on his hat that also covered his neck and face. He, at one point, lost his ski poles, his skis, his helmet and just wanted to give up. He was crying as we stood there, on the white powder, searching through the crowds of brightly colored outfits for his goggles, his skis, his helmet and his poles. I told him he was going to ski and we would get it all worked out. I found the skis. We got a new helmet and new poles. But he was left to ski with no goggles in below zero temps. And he loved it. He had such a great time. Even better was the next day when our friend that had joined us took Jim and Frances out on the slopes. They ate at the bottom of a slope, next to a lake  for lunch.  She worked with Frances and  helped Jim navigate the trails and the lifts. It saddened me that Jim had to quit early because he had gotten tired and began having a lot of trouble getting on and off the lifts, but wow! What a great friend! I know she wanted nothing more than to ski all day on the slopes and spend the day zig zagging and jumping over the beautiful white stuff. But, she didn’t. She took it upon herself to help. And what a gift she gave me. I was able to relax and not worry about him. I was able to chill out with Brad and my parents and at the same time know he was being looked out for. I hadn’t realized until then how stressful it can be at times. Just trying to keep up with him and his stuff and his schedule and his needs on top of mine and the kids.

I already had been feeling guilty because I had stopped long enough to look at his hands. They were cracked and looked horrible. He hadn’t trimmed his nails and wasn’t putting anything on them to protect them from this harsh winter and they looked painful. A few weeks ago I had seen they were looking rough and had told him to start putting lotion on them each night. He would wash his hands after putting the lotion on and I would tell him to go put some more on. I would explain to him to wash his hands before putting the lotion on. And he would repeat the same scenario night after night. It was almost like a comedy. But with such a hectic life, I hadn’t really checked out the progression. I am so ashamed to admit that I hadn’t noticed how deep the cracks had become and how long his nails had gotten. Jim has always been a stickler for personal hygiene and this is all so foreign to me. Having to keep watch on his personal care seems so evasive and robs him of some privacy. I know this is going to get much worse. But each initial stage of care seems to rob him of himself and robs me of him.

So, we had many rescuers this past weekend. Silent angels who helped make the vacation possible. Good friends that joined in the fun and helped us. The knowledge that my parents were there to help and to be back up parents if need be for the kids was appreciated. Plus, I got to spend a long weekend with them, which I cherish.

I wish everyone going through this difficult journey were able to enjoy a weekend away like we were. It heals the soul. It rejuvenates the spirit. It brings a sense of normalcy to an otherwise abnormal life.

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)