This is an Important Statement for you to Read and Share

Jim and Brad playing some ball at his new home.

Jim and Brad playing some ball at his new home.

I have wanted to write this piece for a while but I haven’t wanted to offend anyone or hurt anyone or cause hard feelings. So, I write this with the understanding I am not trying to call anyone out for offering us suggestions or trying to help our family. Just the opposite. I am writing this particular piece in the hopes of EVERYONE reading it and understanding the gap and the disparity of assistance for many, many families in need of help. If you care at all about our society as a whole, you will read what I am about to write.

First of all, thank you to everyone who has sent in suggestions. I appreciate you taking the time and making the effort and in some cases, doing quite a bit of research. Now, let me speak freely without the worry of being taken the wrong way.

Stop. Stop telling me that I just need to make one more phone call or fill out one more form.

I have. I have filled out every form known to man. I have made call after call after call. Many times while Jim sat helplessly, just feet away, listening to me repeat our story, his story. His burdens on our family and feeling the guilt he so wanted to avoid are now seared into my mind as something I threw in his face over and over while trying to find the answer that has alluded us and continues to do so.  I have gone online and researched. I have spent hours and hours and hours (you really wouldn’t believe) just trying to find an answer. I think I have worked harder and spent more time, energy and filled out more forms than I did in all of my years of college combined.  I have always believed in my heart that we would have help. I have always believed that when the time came, Jim would be taken care of and I know he thought the same. We both assumed  I would just keep working and it would all work itself out. We were wrong, wrong, wrong.

Jim is 53 years old and a 23 year veteran of the US Air Force.

Our children are 11 and 14.

We are middle class.

Jim had Tricare Health Insurance benefits when he retired from the Air Force, which also covers myself and our children.

After being out of work six months due to his Early Onset Alzheimer’s Disease disability, Jim applied for and obtained SSDI (Social Security Disability Income) This is a program Jim paid into with every paycheck he received starting at the age of 14. It does not come close to replacing the income he was earning while working, but it most certainly keeps our family afloat.

After two years of SSDI, Jim was automatically switched from Tricare to Medicare. Medicare is a health insurance program. It is not a program that provides Long Term Care for people with Alzheimer’s Disease. It covers doctor visits and hospital stays, just like any other health insurance program.

I work out of our home as an independent contractor. I have also just started a part time job this week in the hopes of helping with Jim’s care.

I applied for Medicaid for Jim in July. You cannot apply until you need this program. So, even though we knew the day Jim was diagnosed many years ago we would eventually be applying it was only when he needed more help than I could provide that we could fill out the mound of paperwork, meet with Social Service workers and start the process. This is something I strongly believe needs to be addressed and changed. But, I will save that tirade for another day. We were turned down for Medicaid. Not because of our income, but because Jim does not qualify medically. He does not need “skilled nursing”. He does not need someone to monitor his blood pressure or blood sugar. I promise…I am not making this up.

We have gone to the Veterans Administration Hospital in Hampton, Virginia many times.  I was told each time there was nothing to help us. His disability is not service related and he is not 65 and he makes more that $26,000 a year. I went back and I called. I have been desperate trying to find help. I have sat and cried, feeling like a forsaken child of the country I have always loved and been proud to call mine. Nothing. No help to cover his care. We did qualify for the 30 day respite from the VA this summer which was a Godsend. For this, I am very grateful.

I couldn’t understand why others making suggestions of different programs he will or he should qualify for has bothered me so much. I know that each person who writes to tell me that the VA will help or Medicare will help or Medicaid covers their uncles care means well. I know when you write with your stories and your suggestions, you are trying to help. Unless you can actually make a program start covering Jim’s care, please do not tell me what I am doing wrong anymore. That is how I take it. I shouldn’t, but I do.

Recently I was talking to a good friend about this. I told her I understood people were trying to help because they care and they want to help our family but with each sentence saying there is help out there if I only would do this one thing, I was hurting more and more. I couldn’t figure out why. Why would it bother me when I know I had done everything and I know their intentions were good and genuine?

“Because it is a sore, raw subject for you Karen. You still feel like you have missed something and you also feel like there should be and is a program to help if you can only find it. Each message reminds you that the system is failing your family and it makes you feel like you are too.”

And there it is. I struggled to understand something that she layed out before me to make perfect sense.

I agree with all of you: There should be help. There shouldn’t be a need to have a charity page asking for donations from everyone under the sun to take care of Jim. It was a most difficult decision to do so, but I cannot take care of him the way he deserves. I cannot change his diaper and help him shower and help him all day long with finding something to occupy himself. I was failing him and our family. But this is not anything that qualifies for help. Needing assistance with eating or hygiene does not entitle you to receive help with your loved one. We don’t fit into a black and white box and therefore there are no possibilities of going outside the box to use common sense to help. Either you fit the criteria or you don’t. We don’t.

I have met with our State Senator, staff representing our US Senator, social services, Medicare and Medicaid representatives and VA representatives. Nothing yet. There is a slight hope we may receive some benefits from the VA, but my attorney (who completely rocks) and a local reporter and our US Senator haven’t been able to make it happen yet. But, you never know. I am still optimistic, but now with a much clearer sense of probability.

So please understand I have put more effort, energy, time and hope into finding this solution that must be out there somewhere than I have put into anything else in my life. It is like pouring salt on a wound when you tell me I haven’t done what I have been trying so very hard to do for months now.

I appreciate your belief in our system, as I have always had your same beliefs, but sometimes, we are all wrong. Please keep writing me and if you genuinely have something that you have found that can help our family, please share as I am hoping there really is assistance available. Otherwise, please start a conversation with your friends and neighbors. You may be surprised to find they have been through this same process. And if you are so inclined, please start advocating for a change. It will be too late for our family, but others coming behind us, which could be your family, need us to stand up and demand all of our citizens be cared for and treated with respect and dignity. No one should lose their homes, their life savings or their own health in a  land that prides itself on prosperity.

Jim, Frances and Brad. April 7, 2012. Jim's 50th birthday.

Jim, Frances and Brad. April 7, 2012. Jim’s 50th birthday.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (44)

There is a Solution, I just haven’t found it yet

quote-about-figuring-things-out-and-moving-forwardI am exhausted. Mentally more than physically. The paperwork. The worry. The constant watch. The pure, unadulterated sadness. It is beyond overwhelming, it has changed my thought process, my soul and my inner-sanctum.

Watching a person die is horrible. Watching someone you love die is worse. Watching someone you love die a slow, tortuous death is beyond comprehensible. The guilt, the helplessness, the frustrations, the anger, the heartache, the wish for it all to end…. There are times I wish Jim was afflicted with something simple like cancer or heart disease. Not only would there be hope for him (and therefore us) but there would be more support and understanding from the world around us. And most importantly, HE would still be with us.

The endless paperwork, processes and lack of understanding from any system that can help us is completely unbelievable. If someone else in my situation was telling me this story, I would immediately think that there must be something they have missed, there must be a solution and obviously they haven’t tried hard enough. Well, I am here to tell you….I have tried.

Many readers have been so, so kind and reached out with suggestions and ideas and just thoughts of love. Thank you. I want to address the following to you:

Jim is retired Air Force. He is currently on Medicare because he has been on Social Security Disability for over 3 years. Once a person who has Tricare Health Insurance collects SSDI for over two years, they are automatically switched to Medicare. There is no option.

We have applied for Medicaid and have been told our case should be reviewed and a checklist should be sent out sometime during the first part of August. In the meantime, I just wait to find out what paperwork they will need. I have done some research and so far have gotten together most of what I think they will want….every bank account, every insurance account (they want to know if life insurance policies have a cash value), every investment account and our mortgage statement. It took me several days to get all of this together. Obviously the person(s) who decided this whole process have never in their life been in a predicament like we are currently facing. The application, the turning in of said application, the conversations on the phone, the gathering of information, the waiting for an answer….it is almost as if they are trying to just wear people down so they don’t finish the process so they don’t have to help them. How do others get through this??

The Veteran’s Administration. Oh boy. Where do I start? Should I tell you about the gentleman who was supposed to be helping us with our intake questionnaire but instead  WAS WATCHING COLLEGE BASKETBALL on his computer? Let’s be honest….it isn’t college basketball season which means it was a re-run which means he already knew who won anyway! Ok, I am moving on….Jim scored a 9 on his MMSE. Some of you who have travelled this road know that means he tested in the severe range. How unbelievably awful it was to sit, as the psychiatrist, who obviously has no Alzheimer’s Disease training or background, tried to ask Jim about his recent psychotic break. Then tried to carry on a conversation with him. Then asked him simple questions he could not answer, as I sat and watched, tears streaming down my face. Awful. Just awful. But at least the kind doctor said he would try to help us and would try to find a way to get Jim care. Again, his disability isn’t service related. He isn’t a Vietnam Vet or Gulf War Vet and he is not 65. We make over $26,000 a year. We are the middle class and we have nothing.

I sat at my desk the other day just dumbfounded by this whole mess. How am I expected to take care of Jim the way he deserves AND take care of two children the way they deserve? And somehow keep sane? Actually I am not sure I am at this point!  $6000 a month is the starting point for Memory Care. I sat and figured out where I went wrong…If we had saved $500 a month for each of the 18 years we have been married, we could cover 18 months of care. But, we didn’t. Please let this be a lesson for all of you. In other locales around the country, the costs are double. So start saving my friends.

Jim is still home. He is doing very well. He is happy in a childlike way. He now needs assistance with getting dressed, with shaving, showering and unfortunately parts of the bathroom routine. He takes it all in stride, not getting angry or embarrassed. Well, occasionally he snaps, “I can do it” and there have been a few moments the kids were scared because he seemed to be getting agitated and we are all on eggshells knowing what happened in Connecticut,  but overall he is easy going. I feel bad because he can’t figure out things to do without constant urging and help. He will sit and color at the table, but needs some direction. I, unfortunately, am at this point either making phone calls, trying to fill out paperwork or collect needed paperwork or fixing dinner, or starting a load of laundry or  trying to make sure I focus some attention on the kids to remind them I love them and I do want to hear about their day and their thoughts.

I have not left Jim alone since he returned and I now feel like a prisoner in my own home. He has returned to the wonderful respite program he attended before a couple of times a week but otherwise I have a shadow.  No quick runs to the store, or walks with friends or private conversations (he is always lurking within 10 feet of me) or ALONE time. None. On one hand, it is so sweet that he loves me and needs me so much he cannot possibly be out of sight of me. On the other hand, I am reminded of crazy stalker people and no one wants to feel as if they are constantly being watched and followed. It is creepy and unnerving.

I need $72,000+ a year on top of the income needed to take care of myself and the kids to now take care of Jim in a facility that will keep him safe, occupied, clean and happy. I hate that money has become such a huge issue in his care, in our story, in the eventual way he is taken care of. I believe all that should be at issue is making him feel safe and loved as he dies. Helping our children lose their father with the least amount of long term affects.  I struggle every day to figure out a solution. I am college educated, strong, smart and capable. There must be an answer and I must not be good enough to figure it out. After all, it just doesn’t make any sense to  not have a solution. Wonderful suggestions have been made: Go Fund Me pages, ads on my blog, selling the rights to our story, divorce, spending it all down and using our savings because I am young enough to build it back up again, in home care, re-doing our walk up attic for him and a caregiver, etc. How is it that so many others have dealt with this situation and yet we are still not able to call the right person, hear a few viable options and pick the one that best fits our family? Lots and lots of ideas have been floated our way and it’s just hard to know what the right answer is. I suppose I will never know what the right answer is. I will be forced to make the decision I can make and then I will keep moving forward because that is what we do. Humans keep moving forward. Through grief. Through pain. Through hard times and even through good times. We all move towards some unseen light and hope that along the way we are consistent with our happiness, our love and our contributions to others.

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)

Three, two, one….breakdown.

Our family Christmas Eve, 2009.

Our family Christmas Eve, 2009.

I knew this day was coming. I knew I would have a day that included tears and sobbing and full body blowbacks. It happens now on a semi-regular basis and it has been a few months, so I knew it was on my radar. I was just thinking it would be in the privacy of my room, alone in the house and without an audience.

I am not sure how it started. I have replayed the whole scenario in my mind numerous times and I think I have narrowed down the trigger, but because it includes one of the kids and it is personal for them, I am going to remain silent. I will take full and complete responsibility. It doesn’t really matter the cause, there were numerous triggers, there was just one that was the tipping point when the others were the building blocks.

I took Jim to get his new military i.d. After calling and making an appointment and explaining he only had a passport and no other forms of identification, I was told that was all that was needed. In my mind, I was questioning the authority on the other end of the line, but what could I do?  You see where this story is going, I am sure…..we show up late; after some of the aforementioned troubles at home, after getting lost on the base, after asking for directions numerous times,  to a woman who promptly tells me she can’t help us because he needs two forms of i.d. I promptly explain to her that I had called and yadda yadda yadda. She told me there was nothing she could do. I was teetering on that breaking point. I could feel myself exploding inside;  I was like a volcano, ready to erupt but quietly releasing smoke signals instead. I explained again to her that he has no other i.d., he has lost his wallet and that he has Alzheimer’s Disease. My voice was getting louder and more direct and this could have gotten ugly, really fast. But I sat there, biting my tongue,  (Jim of course said nothing) and she silently typed away. The next thing I know she is taking his photo and asking him to press his left index finger on the scanner. But he doesn’t know his left from his right anymore. And he doesn’t know his index finger. And I have to help him. And his signature is a stark contrast to the beautiful penmanship he once graced legal documents with. It was too much.

We barely made it to the van before I lost it. Just lost it. I wailed. I cried. I moaned. I had tears, snot and drool all over the place. Jim just sat there. Silent and confused. Normally, I reserve this kind of breakdown to a solitary party, but today it was open entertainment for him and anyone else who walked by. In the back alley of my mind I was trying to get myself to stop. I knew I needed to get a grip and put my big girl panties on. But sometimes those panties don’t fit and there is no controlling the emotional outpouring that seeps through my body. I mean, really? He ended up getting his i.d., what was the big deal? How can I learn to let go of all the past manifestations?  Let go of the shattered handmade pottery bowl a friend who moved overseas gave us. Let go of the indoor plant that was knocked on the floor, complete with broken pot, dirt everywhere and now a dead plant? Let go of the constant lost look on Jim’s face. Let go of the misplaced items and the inside out clothes and the lost conversations, the loneliness and emptiness and the bitter sadness that has become at home in my soul. How do I release the frustrations of each reminder of the Jim that is no longer? How do I appreciate the Jim that still is while longing for the Jim that was?

Eventually I started gagging and convulsing enough it snapped me out of my hysterical state. I had mascara down my face. My nose was red. I had used up half a box of tissues. When I finally grew quiet, the silence was deafening. Deafening in the way that makes you realize how terribly loud you were and how awful you sounded.  Jim was still just sitting there, next to me and saying and doing nothing. Nothing. Which makes all of this even more heartbreaking when I stop to think of how he is/was. Not a person to sit by without trying to comfort. Not a person who wouldn’t try to fix whatever was wrong. Not a person who would look utterly confused and uninterested.

Later, I got to a restroom and looked in the mirror. There I saw I had somehow broken a blood vessel between my nose and lip. There was a thin, red streak right in the middle of my philtrum, connecting my nose to my top lip. I have never seen anything like this and have no clue how I did this during my meltdown.

I suppose it could be related to all of the pressure from holiday expectations. Or it could be the fact Jim is slipping more and more which adds more pressure and more sadness and more reality to the situation. Or it could be me having a normal rough day. Whatever the cause, I have come to realize it happens. It happens, move on.  I feel better (usually) and it lets me know I do care. Sometimes it is hard to see I care because I am too busy being a Mom or worrying about money or trying to fix dinner or driving to some practice or event or working or something other than focusing on our crummy situation. These moments of heartbreak and genuine sorrow and anguish let me know I am still human. I am still full of compassion and love and I am hurting. I don’t always allow that to show, but when it does, it does. Big time.

Then you know what happened?  I worked. I had a friend call and say “hi”. I got two e-mails from friends. I watched Frances play in a band concert. I saw Brad smile and show his wonderful personality to me and others around us. I picked Jim up from respite care and they told me while everyone was listing things they are thankful for, Jim said he was thankful for me. For me. The woman he had just watched sob and turn into a ball of mush.

So, I am good. I am muddling through and working through as best I can. I don’t have a manual on how to emotionally handle this and I am doing what I can, when I can, the best I can. Everything else will have to just be.

December 2013

December 2013

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (18)

That’s What Friends Are For

Jim, Jorge and George. Sept. 2014.

Jim, Jorge and George. Sept. 2014.

This is a guest blog piece by Jorge Cordero, a friend of Jim’s from his first years in the Air Force. They have a bond that nothing can break….not even Alzheimer’s Disease. 

A few years back I was given the news that my good friend Jim Garner had been diagnosed with early onset of Alzheimer’s. It was agonizing to receive the news but I was not surprised as I knew Jim’s Mom suffered from the same disease while we were stationed in Germany in the late 80’s. I had lost Jim’s contact information and the only e-mail address I had was from work and I knew he was no longer employed. I found Karen’s Blog as one of our Air Force buddies posted it on Facebook. After going through Karen’s blog and crying as I was reading I knew I had to get in touch with George Pacheco, our buddy from our days in Bremerhaven Germany. I called George and alerted him to Karen’s Blog. Another call came an hour later and now the two of us are crying on the phone. How could this happen? It is Jim Garner, the athlete, the star, the rock, our friend.

George and I knew of Jim’s diagnosis a while back but we really did not understand it. We didn’t know it would progress to his current state. One thing was for sure, he and I were going to see Jim and we were going sooner rather than later. No more postponing…well maybe by a month and a half. You see, I’m a defense contractor in Colorado and George is Government Civilian in Georgia working for the Air Force…it’s not easy to get our schedules synched. I had a trip to the Middle East and George had a high-level inspection coming his way. But we managed and on my return flight from Qatar I stopped in Virginia to see my good friends Jim, Karen and their beautiful kids Frances and Brad. George flew in on the same day and off we were to spend time with our buddy. This is my account of this emotional visit.

First, Jim could not have a better care giver, advocate, wife, partner, and friend than Karen. She’s as strong of a woman as it gets. I’m so proud of her.

I flew in to Virginia on the morning of 31 August, my friend George was flying in in the afternoon. The plan was for me to pick him that afternoon and then go to Jim’s house. During the day I was communicating with Karen of the plan when she suggested that I pick Jim first go to the airport and surprise George. What a great idea! I will do that and surprise George…except I was counting on George’s support when we saw Jim for the first time. Who was going to be there? Karen was out with the kids and she called Jim and gave him instructions. I was scared to see Jim for the first time in 6 years. I’ve had a little practice because my wife’s Dad suffered from Dementia, but still I was scared to see Jim. What if he didn’t recognize me…what if?

I drove to Jim’s and knocked on the door. Jim opened the door with a big ol’ smile…’Hey, how are you Jorge’? I was relieved, gave him a big hug and off we went to the airport. On the way to the airport, Jim was talkative and telling me about the different places as we were driving by. You could tell he had difficulty at times remembering certain details. I didn’t care, I was with my buddy and we were on our way to get the other. At the airport we met George, it was the first time the three of us were together since Jim visited us in Colorado as a birthday gift from Karen since their wedding. That night we went out to dinner and while at the restaurant we reminisced about our days in Bremerhaven,Germany.  We chatted with the kids and joked about the fun times in Europe. There also was truly the first time when I noticed Jim’s deterioration. He was struggling with the menu. He couldn’t tell what one of the items was. He turned to Brad and asked him, ‘what is this’? Brad said, ‘it’s grilled chicken.’ I started to get a clear picture of Jim’s condition. We went on with dinner, remarkably Jim could remember details and names of people we were stationed with in the late 80’s. George and I couldn’t remember, but Jim did. George and I looked at each other in disbelief. How can he remember those details but not what he did earlier that day? Later on Karen, George and I discussed this. Karen told us Jim’s short term memory is what has a taken a hit. This was proved once again the next day when were scheduled to go golfing.

That morning Karen asked Jim if he remembered what he was going to do. Jim could not remember. Karen reminded him that he was golfing. She asked him if he remembered who he was golfing with. He answered, ‘with Jorge.’ Karen asked, ‘who else?’ Jim answered, ‘the other guy.’ He couldn’t remember George’s name. This was a theme throughout our visit.

George, Jorge and Jim playing golf, September 2014

George, Jorge and Jim playing golf, September 2014

Golfing was great, it was like muscle memory would take over and Jim would hit those great, smooth drives down the center of the fairway…unfortunately he would lose track of which one was his ball. This disease sucks! One thing I noticed was that every time the beverage cart would come around, Jim would turn down anything to drink. It was a hot, humid day and he refused a drink. By the third time I kept thinking that he had to be thirsty so I went ahead and bought him a bottle of water, he downed the whole thing in one gulp. I was mad at myself because I should have known better.  As we were unloading the clubs from the car I noticed he had purposely put his water bottle in the trunk of the car. I asked him if he wanted it and he said no. The bottle was full and cold and it was a hot and humid day…I should have taken the bottle myself and put in the golf cart, but didn’t make too much of it. Later after I noticed how thirsty he was, I felt guilty not grabbing his water bottle.

After we got our golf cart and were getting ready to head out to the first tee he took out a brand new glove and a sleeve of balls from his bag and laid them next to him. By the time we made it to the first tee and the folks behind us took our picture, I noticed Jim had a very old glove on, which is ok but this one had a hole so big his thumb was sticking out of it. I asked him if he wanted to use the new glove he took out and he said no. If you look closely to the picture of the three of us standing with our clubs, you can almost see it. I knew what was happening but didn’t make a big deal out of it. Throughout the round I kept seeing him taking yet another new glove out. By the end of the round he had three brand new gloves out…he never wore any of the new ones. Again I knew better and didn’t say anything.

In another instance I let him drive the cart, on two different occasions he could not differentiate from the gas and the brake pedals. He tried to get the golf cart going by pressing the brake pedal and I could see he couldn’t figure out why the cart was not moving. I very calmly told him ‘it’s the other one Jim.’ I thought to myself there was a good reason he had given up driving and it also reminded me that Maria’s Dad was in two different car accidents before he was diagnosed with Dementia. Then I wondered if Maria’s Dad was already exhibiting traits of the disease and no one knew. I was glad to know Jim had given up driving and knowing that he was safer and the people around him as well. He would never forgive himself if he hurt someone.

After golfing we went to Fudruckers for lunch and I knew already he could have a hard time reading the menu (I had noticed it the night before at dinner), and he did. You could tell he couldn’t decide what to have because he couldn’t process reading and assigning meaning. I helped him decide by offering choices and he settled on a grilled Chicken Salad. During lunch we were talking and you know how proud he is of the kids. We were talking about the kids’ activities and what they were involved with. At one point he said…’and my daughter, what’s my daughter’s name?’ I just casually said ‘Frances’ and didn’t make a big deal out of it. To me it was important to help him through all of those lapses without him knowing that I was doing it.

During the 2 days we were there he suggested four or five times going by Gary Cramer’s office to say hello. Only problem was we were there Sunday, and Monday was Labor Day. Gary was not going to be at work. I again mentioned to Jim each time that Gary probably would not be at work as it was Sunday…or Monday when he brought it again. He didn’t remember that we had the same conversation several times. I just went with the flow.

We had such a great time with Jim, just like we always did. It was special and it was necessary. He needed it, Karen needed it, George and I needed it. Karen knew her husband would be taken care of and looked after during this short time. I think we gave her a little relief, even if it was for a few hours. I’m glad we had the opportunity to share a few days with Jim. Hope we get to do it again soon.

Every trip comes to an end, this one was very emotional and one that we were not prepared for. As we walked out to the porch to say our goodbyes, George gave Jim a hug and told him that he loved him. Jim started to cry. I think he knew that the next time we saw each other he would have a harder time remembering who we are. George started to cry as he was hugging our buddy. I was trying to do my best to fight the tears but seeing Jim and George crying was too much for me…too much for Karen. All four of us were crying because this disease is taking our friend, but most importantly is taking Karen’s husband, Frances and Brad’s Dad. As I write this I still fight the tears but I also have a great memory of my friend. As George and I returned back to our homes,

George put together a memento of our round of golf with Jim. Each one of us has a framed scorecard of our round of golf with pictures of us at the course. Mine is in my office right in front of me where I get to look at Jim’s big smile all day long. I loved the time with my friend. We love you Jim! I’m thankful Jim has such a strong woman in Karen as his partner, care giver, advocate, Mom of his children and his soul mate. Karen you are God-sent. Love you guys.

Jim enjoying the scorecard and photos from his visit with Jorge and George. Sept. 2014

Jim enjoying the scorecard and photos from his visit with Jorge and George. Sept. 2014

One more comment, I remember when you, George and I were discussing the finances and Jim’s retirement paycheck and how it was divided (disability vs retirement). He patiently listened to us talking about it but when we thought something didn’t add up, he got worried. I could tell in his demeanor. I remember reading in your blog that he knows what’s going on and how frustrating it can be for him when he can’t remember something…he knows. He gets frustrated…he knew something was not right but didn’t have a way to help…I could see fear in his face. At one point, and I don’t know if you heard him, he said…’please help her.’ It was like he was telling us…’I can’t help and I know I can’t help, but you and George can.’ I know it is devastating to him. It is important for George and I to help you in any way we can. If you ever have a question regarding the military and the retirement, we’re here for you. Jim asked us to help you…and we will!

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

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)

Fast and Hard

Jim and his radar in Columbia, 1998

Jim and his radar in Columbia, 1998

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

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

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

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

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

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

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

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

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

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

At the Grand Canyon. 1998.

At the Grand Canyon. 1998.

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

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

Our honeymoon. Puerta Vallarta Mexico. May 1997.

Our honeymoon. Puerta Vallarta Mexico. May 1997.

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