Fire in the Hole

 

Our group from Virginia meeting with Congressman Scott Rigell

Our group from Virginia meeting with Congressman Scott Rigell

Jim had a great birthday. He turned 53. Hmmm. At one point in my life, that seemed really, really old. Now, it seems young. Not really young, but young. Much too young to have Alzheimer’s Disease.

Sometimes it is almost comical to meet someone new and through the course of the new relationship and conversations explain to them that Jim has this disease. Nearly every single person is taken back. They are a little shocked. You can watch for it, wait about 10 seconds after you tell them and BAMM. You see the complete confusion and then a bit of sympathy and then, if we make them comfortable, calmness and acceptance. All in less than a minute. How I wish our journey through this were so easy to see and work through.

Our visit this past week to D.C. was a quick one. We were able to learn a lot and visit with advocates we have met through the years and re-connect and commiserate together. There are some really awesome and amazing families that are dealing with the same thing Jim and I are, they just don’t have a blog. They have the same pain and suffering and the same desire to help. They have the same needs and the same worries. There are so many of us, it is really scary.

We were able to relax a small bit and we were able to be part of the solution. Jim was awesome. He was full of life and vigor, much more so than I have seen in him in months. It was great to see. I still had to help him with some minor things that last year I didn’t, but overall, I could see his spirits, his demeanor and his thought process had gotten a jolt. He was ALIVE again. Not that he isn’t normally, but in D.C., Jim was witty and chatty and really happy. I loved seeing him this way. He didn’t shave to meet with our elected officials. I didn’t say anything and it didn’t matter. He didn’t put on a tie. It didn’t matter. He couldn’t remember everyone’s name or who we met with or how old he just turned. It didn’t matter. He was still smiling and happy and we had a good time. Again, I was reminded how much more patience I have with him when the kids aren’t around. A few days later I spent 2 days with them without Jim and also had plenty of patience. I somehow need to expand my bubble of patience to deal with all 3 at a time…..a work in progress but one I will not stop striving towards.

Life is so full of challenges. We all face them. Some are much harder than others. Everyone at some point in time faces heartache and pain. It is how we deal with this pain and heartache that will determine the future from that point forward. When the pain and heartbreak are stretched out over years and years, it becomes harder to keep that perspective and stay the course.

While in D.C., we walked the hallowed marble halls of Congress. The first time we walked them I was so nervous I could have thrown up. Ok, not really thrown up, but it was really nerve-wracking. Our first year, I could feel my heartbeat in my chest with sheer nervousness. I was going to be meeting and speaking with someone much more important than me.

This year, my heart skipped beats again, but not from nervousness. I am no longer timid or shy: I have realized that in the 5 years since Jim was diagnosed, there have been no changes in treatments or any new breakthroughs that will stave off this disease. Now when I march down the Halls of Congress my heart beats with determination and I can feel my blood pumping with my resolve to be heard and with the pressure of a time bomb ticking away. When I hear my heels echoing down those spacious hallways, I think of the men and women behind those doors and how they have the power to change the course of my children’s life. They can save Frances and Brad. They can, with one fell swoop of a pen, save my children from falling victim to the same horrendous fate of their Grandmother, Uncle and Father. Now when I walk those expansive halls of Congress, I do so without fear but with shear determination and with no sympathy for excuses. We do not travel all the way there to be given pretexts and put offs. We do not make accommodations so that others will feel comfortable in their ineptness.

There is no more time. The time is now. How can anyone, with any kind of intelligence not see the necessity and urgency? It is written in black and white.

Yes, Jim had a great trip and so I had a great trip. Now we are back to the grind of everyday life.

Thank you to everyone that participated in the forum or contacted their elected official to let them know how important this conversation is. Please keep up the fight and the battle. We are making progress and we will win. We will all keep moving forward until we find a cure.

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

The Purple Brigade are Coming to Town

 

Younger Onset Alzheimer's, Advocacy, Washington D.C.

Jim and I at the Capitol, April 2013.

When I participated in a roundtable speaking engagement recently, I was privileged to meet some wonderful caregivers. They were from all over the country. They had stories to share, just like we do. They were wonderful and I loved meeting them and listening to their frustrations, their sadness, their daily struggles. We all could commiserate together and naturally form a bond. It seems whenever I meet other caregivers, we almost instantly form a bond. It is just what we do. There is an unspoken respect, love and support that comes along with the participation in the caregiver role.

Jim and I attending the National Alzheimer's Disease Advocacy Forum in Washington D.C., April 2013

Jim and I attending the National Alzheimer’s Disease Advocacy Forum in Washington D.C., April 2013

As we shared a few laughs and heartaches, I spoke about advocacy for Alzheimer’s. I explained that Jim and I have become quite outspoken and travel to Washington D.C. and write letters and ask for help on a regular basis. The table got quiet. Something suddenly dawned on me. So I asked them, “How many of you have asked your representatives to fund more research or have even spoken with them about your story?”  Guess what? Not a single one raised their hands. I was really surprised. These people are passionate about needing help. They were willing to come and participate in the roundtable. They wholeheartedly want to help. Yet, they had never thought to contact the people that can REALLY make an impact: Their representatives. Well, you know me….I made them promise right then and there that when they got back home they would contact their representatives and ask for help.

Jim, April 2013.

Jim, April 2013.

Tomorrow, Jim will celebrate his 53rd birthday. Part of me feels like I should throw together  a huge soiree with our friends and really celebrate how awesome he is. But, it is the same time as our annual purple brigade pilgrimage to Washington D.C. to meet with (hopefully) our representatives and join others from around the country who are just as ardent supporters as we are. We have made friends with some fellow advocates that we see  each year. (this is our 3rd year)

I asked Jim before we decided to go if that was how he wanted to spend his birthday. I explained to him the date coincided with his special day. He didn’t hesitate. He didn’t flinch. He stated right away and with certainty that “yes, I want to go. That is much more important.”

So, off to D.C. we go.

I know many of you that read my words will be with us in spirit. You will be on our minds. You will be cheering for us and encouraging us. Thank you.

I ask EACH of you that read these words to help us. PLEASE. You don’t have to travel to D.C. to have your voice heard. Your representative has a local office. You can visit there. Your representative has a website and has a way to contact them through that site. Your representative has an address and will receive your letter. Your representative has an aide that will be answering the phone in their offices and you can call and leave a message. There are many ways to contact your Congressperson. There are NO excuses why you don’t.

Here is a link to a previous blog post I wrote about this subject. You will see two links ¾ of the way down. Click on these links to find out who your representatives are and how to contact them http://missingjim.com/2013/04/26/375/

Please don’t tell me you are too busy. If you have time to watch a 30 minute TV show, you have time to do this. If you have time to read a book, you have time to do this. If you have time to play Candy Crush or some other video game, you have time to do this. NOTHING is more important. Our voices need to be heard. There are millions of lives that are depending on enough money being thrown into research to either find a cure, a vaccine or a treatment that allows the disease to lie dormant in a person. If you can’t be bothered, then you aren’t allowed to complain when someone you love is afflicted and you are sitting at the doctor’s office waiting for them to tell you what medicine to take that will make them better. Unless something major happens in the research world, that scenario will NEVER happen. You will sit in the doctor’s office, in shock, waiting and hoping and leave with nothing but an appointment for 6 months later.

This is a birthday gift you could give to Jim that will not only keep on giving to our family, but to millions of others as well. Help Jim celebrate by writing or calling your representative right now.

So, while Jim and I can, we will descend on the Capital of the United States, purple banner slung across our shoulders, along with hundreds of others who are able to do the same. We will speak and we will find out soon enough if our voices and our pleas are heard.

Meeting with Senator Warner and his staff. April, 2012.

Meeting with Senator Warner and his staff. April, 2012.

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)

Searching for Superwoman

Washington D.C. Cherry Tree Festival, April 2010

Washington D.C. Cherry Tree Festival, April 2010

I have been doing EXTREMELY well the past two months with losing my patience with Jim or the kids. I have come to realize that I am the epitome of patience with Jim by himself or the kids by themselves. But get all 4 of us together and there is a storm on the horizon.

I work really hard at my unflappability. Patience and calmness. These things are not easy in a fast paced environment like our household. There is always something needing to be done; places to be, homework to do, instruments to practice, food to be prepared, animals to tend to….I mean honestly, the list could go on and on. Just like most American households with active children living in them there is just never enough time or energy to get everything done in a day.

But, my NO YELLING streak was broken this week. I had been doing so well.

Every Monday I have to leave my house when the kids are just waking up. I have to travel nearly an hour to work. On these days, I stress. A lot. This past Monday, I went through my whole day with no major hiccups (i.e. no calls from the kids). Then I get home and it is dinnertime and I am trying to figure out what to fix and Brad comes in the kitchen. He is not feeling well. He is starving (not unusual wording from him at any given time) and lets the cat out of the bag. He didn’t eat lunch because he forgot his lunch on the counter. He forgot to pack it up. So I instinctively ask Jim why Brad didn’t have a lunch. I ask Brad why he didn’t call us to let us know. I ask Jim what happened. All the while I am picturing Brad sitting at the lunch table with all the other kids stuffing their faces while he sits hungrily longing for a morsel.

A rage builds inside of me as I ask questions and find no good answers. Why do I still try to find answers? Why must I do this same routine? When will I accept what is happening and JUST LET IT GO?

Jim finally makes the mistake. He tells me he saw the sandwich on the counter and ATE IT. Yes. He ATE his son’s lunch. Even as I write these words days later I feel the churning and frustration build inside of me. I am very protective of my cubs. And one of them going hungry, even for one meal, is unacceptable to me. Then to find out that Jim knew he had left his lunch and proceeded to eat it instead of putting two and two together and realizing that Brad needed something to eat or else he would go hungry was just too much. I snapped.

I am constantly trying to be two places at once. Usually work and home. Most people I think are the same. Especially when they have kids. Especially when they have extenuating circumstances. But what is the answer? I can’t quit my job and stay home. We need the money. I can’t afford to hire someone who can come in and organize the family while I am away. Besides, I feel like with a 10 and 13 year old, they are old enough to take some responsibility. Because I feel this way, I interrogate Brad on why he didn’t remember his lunch. Why he didn’t call. Why, Why, Why?

But the real person I was angry with was myself. Me. I wasn’t there. I wasn’t home to make sure he took his lunch. I wasn’t there to assist Jim. I should have done something different to make sure this didn’t happen. Guilt. It has engrained itself into my very core. Guilt for yelling. Guilt for needing help. Guilt for not being there when someone needs me. Guilt for forgetting a commitment. Guilt for missing a deadline to turn in fundraising money. Guilt for not being able to fix Jim.

Yes, I know most of these things aren’t my fault. But when you have the personality I have, there is an underlying belief that you can do anything and everything. You are capable of doing it all. And up until just recently, I pretty much was able to do this. But I am slipping. As Jim slips into a deeper hole, I slip too. Even as I struggle to reclaim myself and my abilities I catch myself faltering. I feel my capacities shrinking and somehow becoming just out of reach. I feel them flitting away almost daily. With each thing I forget or can’t do I realize that I am losing ME. The real me. The me that is being replaced by someone who can no longer keep up. The real me that would even care.

I am exhausted. I realized that with such potency and surprise when I got a brief respite in San Diego a few weeks ago. The pace of working full time, taking care of two kids and Jim, bills, taxes, schedules, meals, shopping, the yard, the laundry, homework, activities, freakin’ school projects, friends, birthdays, holidays and advocacy……

I am human. I will realize this soon. And I will change. I don’t want to. I want to stay the same Karen that can do it all. That can volunteer and do a great job at work and who has a clean home and who keeps track of her kids’ schedules. Whew! It wears me out just reading it all.

Last year, when Brad was in 3rd grade I had a really harsh reality shoved into my face. We were about ¾ of the way through the school year. Brad brought home a grade that was quite unusual for him on a test. So, I started paying attention. I started asking questions. I did a little investigation. I was stunned. And ashamed. And terrified.

It came to my attention that NO ONE was helping him with his homework. I hadn’t realized that Jim wasn’t helping him when they got home from school. By the time I got home from work, Brad would tell me he was done with everything and I just went along. Jim never said much and I just figured Jim was helping him and reviewing everything. That is how it had been in the past. But as Jim had progressed, this small detail of parenting had slipped away. No one told me. Hello. Isn’t someone supposed to tell me each time Jim slips or progresses and something changes???

So, I figure out that my brilliant kid has been making all A’s and B’s all year with NO HELP from home. With anything. My level of admiration for Brad went up a notch and my guilt went right along with it.

There are so many things that get “thrown” at me weekly. Things I once took for granted that are no longer viable. It is a painful process which has no manual or guide. You basically figure it out as you go.

Tomorrow, the kids have dentist appointments. At the same time. Which is a good thing. Except, I made the appointment 6 months ago when I didn’t have anything going on tomorrow. But now I do. I have to be at work, 45 minutes away, 2 hours after their appointment time. So, I have stressed over this for the 3 days I have been in the realization that this time frame could be a problem. What to do? If I try to reschedule their appointments who knows how long it will be before I can get them in again. If I tell my boss I will be late, that will be another notch in my never ending notches of inexcusableness. So I stress. And I fret. And tomorrow I will find out how quickly the dentist office can clean and check two sets of teeth.

 

***Side note: Dentist awesome. Teeth cleaned. No cavities.  Kids to school and me to work in plenty of time. Sometimes the universe smiles on us all.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (14)

Apples anyone?

Frances picking apples in Charlottesville, VA Oct. 2008

Frances picking apples in Charlottesville, VA Oct. 2008

Since Jim has stopped driving, our family life seems to have picked up speed. More decisions on which child gets to do which activity and I am constantly being pulled in two directions. I know, I know. I am only one person. I can only do so much. I can only do the best I can do. But I am hard headed. I am an over achiever. I expect to be able to do everything and be everything to everyone. It is hard to say “No.” I am getting better. Fundraising for the kids ball teams and schools, volunteering at school functions, meeting someone for lunch or coffee, or just deciding if we can even attend something all become overwhelming decisions or tasks. It all gets scrutinized and categorized. Life as we knew it is over. We are obviously onto a new stage of this not so fun game.

Yesterday was “Doctor Day.” It wasn’t too bad. Except for the part where Jim decided to tell the kind neurologist that I won’t let him eat our apples. We were discussing Jim’s weight, his huge eating habits, his exercise, etc., and he suddenly blurted out that I don’t let him eat the apples. What??? Let it be stated here and now that a few weeks ago I went to the store almost exclusively to purchase apples and came home with OVER 20 (the kids counted them). Within 3 days they were gone. I don’t eat them. The kids are gone to school most of the day. That only leaves one other person…..

So after we got home, I asked him about the statement with the apples. His reply, ”the doctor knew I was joking.” Ummmm. I don’t think so. I didn’t think it was funny at all. I know that elder abuse, or abuse of those who can’t help themselves in many forms and fashion is quite common. It seemed to me that the doctor thought he was serious. Then, for the first time, they asked me to step out of the room when he did his Mini Mental Exam. No explanation why. It left me to wonder, “Do they think I am not feeding him?” Let it also be known that Jim eats. A lot. I think I have mentioned this. We rarely have leftovers. I don’t mind. I don’t really prefer leftovers anyway. But he eats enough to feed 3 people in a day. Remember, I told you I would tell you about the Raisin Bran? He LOVES Raisin Bran. Always has since I met him. Now, I buy a box of Raisin Bran a week at Costco. COSTCO size people. I don’t eat it and neither do the kids. It is all him. That is TWO HUGE bags of Raisin Bran a week. It is so funny that this is the one thing that has remained such a staple for him. Years ago, early in our marriage, I used to get up and try to fix a “nice breakfast” for him. Something engrained in my Southern self. He would tell me he just wanted his Raisin Bran. Even if I had already produced a nice meal of eggs, waffles, pancakes, etc. No matter what else I had fixed, or how great the kitchen smelled, he preferred his common bowl of cereal.  I am not sure when he eats it but it must be in the morning and sometime while I am away at work. I never see him eat any cereal at night. He should weigh 300 pounds, but he has kept his weight even since getting off the Aricept (he lost a lot while on it).

I shouldn’t worry about what others think. I should be past that point. But when your husband tells the doctor that you won’t let him eat something and thinks it is funny, well, it is something you have to let go but at the same time you sorta worry about in the back of your mind. Like if your 6 year old were to go to school and claim you locked them in a cage all day or beat them unmercifully. It hits you in that spot that is vulnerable. I don’t need to shout out to the world how I am taking care of Jim. It doesn’t matter as long as he is happy, the kids are happy and he is taken care of. But it does become an issue if false rumors start.

Brad picking apples, Oct 2008

Brad picking apples, Oct 2008

 

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

Ride Rona, Ride

Rona and Jim throwing out the first pitch of the Peninsula Pilots ball game, Aug. 2013.

Rona and Jim throwing out the first pitch of the Peninsula Pilots ball game, Aug. 2013.

This world is full of amazing people. I am thankful each and every day when I am blessed to be associated with such incredible people. I love hearing their stories and learning new things from their escapades. I also get inspired and pushed forward and lifted up. There is one such lady who is just simply remarkable.

Her name is Rona Altschuler. She is the Alzheimer’s Association Southeastern Virginia Peninsula Walk Chair. She is also a new friend of mine. She is a wife and a sister. She is a mother. She is a dental hygienist. She is also a daughter who lost her mother to Alzheimer’s Disease. Rona was already the walk chair BEFORE her Mom was diagnosed. Before her life was touched so personally and tragically by this nightmare. She is a ball of energy and a really GOOD person. I know. She has shown me in numerous ways. Right now, she is showing all of us her ardor, devotion and willingness to put her body where her mouth is. Rona is BIKING across our great country. That is right: BIKING. She flew from Virginia to San Diego and along with a small group of women, she is riding her bicycle from California to St. Augustine, Florida.

For two months she is putting her body to the test. She is missing work. Missing friends. Missing her husband. Missing walk preparations. Missing life back home. Missing her son. Think of all of the “normal” life things you would do over a two month period. Now think of completely pulling yourself out of the picture. All of the planning and preparation that would have to take place.  Not to mention the physical training and mental preparedness.

She is writing a blog to keep everyone apprised of her journey; http://ronasride.wordpress.com.   I hope you will read her words and also be inspired by her selflessness and dedication.

Please take a moment to read about her amazing strength and send her some words of encouragement. Let her know how thankful you are that she is willing to put her life on hold so that others won’t have to.

The main reason Rona decided to do this ride across so many miles is to spread awareness along the way about Alzheimer’s Disease. Every stop they make, she meets locals and tells them why she is riding and about the need for more help. She is also doing this to raise money. So, if you can, please donate; http://ronasride.wordpress.com/please-donate/  Even if it is only $5. Imagine how much your small (or large) donation will help her as she pedals along through Texas and Mississippi. Imagine the courage and determination this takes. With a click of the button and the sacrifice of a latte you can tell her “thank you.” Rona is paying for her trip with her own funds. 100% of what is donated goes directly to the Alzheimer’s Association.

I am so proud to call Rona a friend and so lucky she is fighting on the same team. Thank you Rona!!! God Speed and enjoy the ride!

 

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

Please Read and Share

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Source: MBA-Healthcare-Management.com

posted by Karen in Uncategorized and have Comment (1)

Car for sale

 

Karen and Jim, June 2012.

Karen and Jim, June 2012.

Jim isn’t driving anymore.

It wasn’t his decision. It was mine. Even though we have known this day was coming for years, it doesn’t necessarily make it an easy decision. Maybe I could have waited another week, a month or longer. Who knows?

I am tired of being in charge all the time. I really don’t like making such tough judgment calls.  I just took away Jim’s independence. I took away someone to help trudge the kids around. I took away something that Jim has been doing since he was 16. I took away his ability to grab the keys, hop in the car and drive to the store, the park, or across country (which we have done a couple of times).

In true Jim fashion, he is taking this all in stride. He doesn’t complain, argue or get upset. He trusts that I am making choices based on what is best for our family. How do I know what is best for our family? Sometimes I feel like I am 10 again and searching for my own path in life. I don’t feel old enough or smart enough or knowledgeable enough to be the one making life altering decisions for anyone. I suppose I took on that role the day I brought a child into this world, but somehow, I am still not sure I am the right person for the job.

Jim on the other hand has always been so sure of himself and knowledgeable about so many things. I relied on his input all the time. I realize now more and more how much I did rely on him. For so many things.

When it was time to discuss him not driving anymore, he just said, “OK.” That was it.

The next day, I brought it up again to find out if he remembered and to make sure he was really all right with this new way of life. He told me he thought he could still drive close to home. I told him he was right, he probably could. We hadn’t had any instances for concern other than his increasing decline in short term memory loss, inability to multitask or ability to make decisions. All things that are needed in driving.  Well, there was the time he sideswiped a trash can in the neighborhood which knocked off his passenger side rearview mirror. But in all honesty, the trash cans on our streets are sometimes really far out in the road. And not too long ago he got a ticket for running a red light. We got the ticket in the mail. It had pictures. I was dumbfounded. Jim DOESN’T speed or run stop signs or red lights. That was the very first ticket EVER for Jim. Of any kind.

I told Jim,”I would rather take the car keys a day too soon than a day too late.” And he concurred. I would never forgive myself if something happened to him or someone else because I was being selfish and not wanting to make a hard stand. Or give up his help with the transportation.

I am very, very grateful for Jim’s fantastic attitude. I know many others have to deal with all of the same issues I do, but on top of it they have to deal with their loved ones’ denial, anger and arguments. There are many, many facets to this disease. It is so much more than grandpa forgetting a name or losing a set of keys.

Decisions are anguished over. Lives are changed. Friends are called upon to change their daily routines and to volunteer to help. Dynamics of families are forever upended.

I sometimes feel that it is like being handed a life sentence in Hell. There is no hope of reversing the sentence or getting out early for parole or good behavior. You are locked up and the key is thrown away. It really just isn’t fair. I sometimes look at Jim and feel sorry for him. Especially when I think back to his love of life, his joy in his family, his love of travel and adventure. Alzheimer’s Disease is slowly robbing him of himself and robbing the world of a fantastic guy.

Since we made the decision a few weeks ago for Jim to stop driving, he has automatically volunteered to drive the kids somewhere or go to the store for me. I have gently had to remind him that he isn’t driving anymore. He seems resigned to the fact and is thankfully an amazing Alzheimer’s patient. I am learning that I have to plan further ahead and ask for more help. Neither of which are easy for me. I am learning as I go.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (12)

Pain with a side of happiness

Screen Shot 2014-03-15 at 10.39.05 PM

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)

Thank you Mom and Dad

My Mom and Dad with me after I finished my first 1/2 marathon in San Francisco. They drove from NC to SF to be there for me. Oct 2009.

My Mom and Dad with me after I finished my first 1/2 marathon in San Francisco. They drove from NC to SF to be there for me. Oct 2009.

I am so blessed. Even while going through the most difficult time in my life, I cannot help but feel a tremendous sense of indelible love and support. I have friends that seem to rally to my rescue when needed. Sometimes when I am not even aware that it is needed. I have two children that show me true and unconditional love. They forgive me for all of my faults as a Mom, a Wife and a Caretaker. And I have my parents. I realize that at the age of 44, I am fortunate to still have both of my parents with me. I am doubly fortunate to have both of my parents not only a few hours away, but of the mindset they will do whatever they can to help me, the kids and Jim out. They will re-arrange their schedule, they will listen, they will cry, they will listen, they will read about this horrific disease to understand better, they will offer guidance, they will come to help out and they will listen some more.

I am headed out early in the morning to be part of the Annual Conference of the American Society on Aging in San Diego. I was asked to participate as a Younger Onset Alzheimer’s caretaker. I will be speaking out for all of us going through this yucky mess and letting others know what we need to keep our heads not just above water, but our whole body as well. I take this very seriously and I realize that I have a lot of families to speak out for and a lot of different stories to meld together. I will do my best for everyone that is needing their voices heard.

But I wouldn’t be able to leave my home, my kids and Jim without knowing they would all be ok. Along comes my Mom and Dad to the rescue. As soon as I asked them if they could come help out so I could go to the conference, there was no hesitation. “Yes. We would be more than happy to watch the kids.” One less thing for me to worry about.

I know I will not have them both with me forever. It crushes me to think about the day when I will have to tell them “goodbye”. I don’t know if I can. Not anytime soon. I rely on them so much for support. Who else REALLY wants to hear every last detail about my kids? Who else REALLY wants to hear over and over again about my unfolding tragedy?  Dealing with Alzheimer’s Disease, I hear so many stories and heartbreak from children taking care of and losing their parents. When I put myself in those shoes,  tears spring up and I am again immensely grateful that I can pick up the phone and speak to my Mom and Dad. There is an acute awareness that each day I grow older so do they.

Our relationship wasn’t always so close or so good. We were close until I was about 12 or 13 and then we became close again in my mid twenties. I regret those years in between. We all must grow and learn but why must we always hurt our parents and lose precious time with them in the process? We still don’t always see eye to eye 100% of the time. I know they bite their tongues and I am sure there are plenty of discussions about what I should or shouldn’t do or have done.  But there is an underlying rule of always being there for each other and making sure we  know how much we are loved and cared about.

When people tell me now how strong I am or how brave I am or how great it is that I share our story, I hope they know they are really complimenting my parents. There is absolutely no way I would even be close to the person I am today without them. I am able to write this blog, advocate, speak out and move forward only because I have my two biggest fans quietly pushing me from behind. Just as they have done my whole life.

Yes, I am so very, very blessed.

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

Living in the NOW

Thank you Patti Brown Photography for this wonderful family photo, 2008.

Thank you Patti Brown Photography for this wonderful family photo, 2008.

I am listening to the kids upstairs. Frances is reading a book to Brad. This is a rare occasion. It warms my heart and soul. I feel a peace I haven’t felt in a long time. Like everything is going to be ok. Is it? Will our lives ever be “ok” again?

It has dawned on me quite loudly in recent weeks that I am actually starting to accept what is happening. And as I do so, I accept Jim and who he is now vs. who he was. I also feel a sense of mourning. Each day it seems I mourn a part of him that is no longer.

I mourn his help as a father.

I mourn his beautiful handwriting that is slowly becoming intelligible.

I mourn our discussions, our communication, our ability to make decisions and co-parent.

I mourn his ability to be my Mr. Fix-it.

I mourn his interest in movies, books, music and the news.

I mourn his interest in the kids’ lives and my life.

I mourn our marriage.

I mourn our family.

I mourn his voice; his ability to speak clearly and with purpose.

I mourn our previous life.

I mourn my partner in just about everything.

Each and every moment of every day. I mourn.

 

At the same time, I am learning (not as fast as I probably should) to accept who he is NOW.

I am being forced to live in the present and only the present. I can’t think of the past. It is much too painful.  I am not at the point where my memories with Jim bring me smiles and warmth. They bring tears and heartache.

I cannot dream of a future; it is too unknown and too full of anguish, fear and loneliness.  All I can see is who Jim is becoming and the fact I am helpless to stop his progression.

Years ago I tried to read the very popular book, The Power of Now.  It just wasn’t in my personality. I naturally envision my future, our future and what we are going to do.  I treasure my past. My friends. My travels. My fun and my heartache. It is all part of what has shaped me into me. It has taught me my life lessons and given me the ability to grow into a woman that can take care of a husband, a family, a home and work full time.  It reminds me of why I married Jim, how we were, how we thought we were going to be. It is a sick cycle. It sucks you in unexpectedly and in a moment you are riddled with pain and a sadness that you can’t remove.

There is no “moving on”. Jim is very much alive and present. We are still in the early stages of this disease. I am very aware of the fact he will be declining and things will become even more difficult. I should cherish THESE times. But at the same time, he is not Jim. He is not the Dad he was or capable of being. He is not the husband. He is not the neighbor. He could no longer be PTA vice-president as he was just a few years ago. He could no longer have a top-secret clearance job as he did just a few years ago. He can no longer get our clothes separated into the right piles; Brad may get my socks and Frances may get his t-shirts. He no longer can remember the exact shelf or drawer to put a bowl or utensil away. He confuses the dishtowels with the washcloths.

No, I can’t live in the past. I can’t dream of our future.  Living in the present may be my only option but I am not sure it is an option I am happy with.  I don’t know at this point in time what would make me happy. Truly happy. How can I be happy when I have a husband that has a disease that has no cure?

I find happiness in the little things. Like listening to our children play together and read together. I find happiness in helping others. I find happiness in making a difference to others. It is the only way.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (12)