Archive for November, 2014

Letting go and Surviving.

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This week I dropped Jim off at a respite care program for a 5 hour stay. It sounds like such a perfect solution to so many problems. But as I took him, I had flashbacks of taking the kids to preschool. Except instead of walking to the end of our block, we drove for 40 minutes. And this time, I wasn’t full of smiles (well, I was but I wasn’t feeling like it on the inside). I was sad. There was something unnatural about the whole scenario. I was hoping he wouldn’t mind being there with people much older than him (he didn’t) and I was thinking that I can’t believe I am taking my husband to a freakin’ daycare. DAYCARE!

When you take your young children to preschool, you accept and know they will be moving onward and upward to more school and learning and growing. It is the beginning of endless possibilities and a joyous, happy occasion. When I took Jim to his “school”, he was happy, but I know it is the start of something less uplifting and hopeful. It is the beginning of something we have known is coming, but now that it is here, it still seems surreal and unimaginable. He seemed content. He enjoyed the man who came to play guitar. He enjoyed the service dog. He enjoyed counting out kernels of corn for the church service on Sunday. He was at ease. And I was….what is the word…heartbroken.

One of the realizations I have faced in recent years is letting go. Not just of Jim, but of Frances and Brad. When they were younger, I was in “control”. I knew who their friends were, I arranged their playdates, I was in their classrooms as the room mom and attended all of their school events, all of their practices and games and was completely immersed in their world. There were very few facets of their life I wasn’t aware of. As they grew older, I gave them space, but for the most part, I was still very involved and “there”. Over the past year or so, I have had to let go. LET GO. I know this is a natural process for aging children, but somehow I seem to be doing it by myself, in huge doses, as Jim gets  less involved with much of anything with them and I get more involved with his day to day activities. So not only am I letting them go, I am doing so without getting my relationship back with my husband.

Since Jim can’t drive anymore, I have to rely on other parents and friends to help out. I can’t be at every practice and sometimes I can’t be at every game. That hurts. Sometimes it has nothing to do with Jim’s disease, just timing. But, if he could still drive, at least one of us would be able to be there. Now, it is down to just one of us and then I have to cover him as well and make sure both kids have rides, all of their gear, water bottles, any money or whatever is needed that particular day and have dinner ready, homework checked and at some point make sure Jim has taken a shower and has on clean clothes. At first, my conscious revolted. I didn’t want to not be a part of their games or practices or events of any kind. That wasn’t how it was for our family. But sometimes, life dictates more than you do. Frances has had several out of town softball tournaments and I needed to stay home with Jim and Brad. Guess what? She had a great time. She learned how other families traveled and packed and how to make sure she covered a few things on her own. Instead of worrying the whole time and stressing, I had to let go. I chose to concentrate on the fact she was being introduced and exposed to new ways of doing things and seeing how other families interact and live. Families that have two healthy parents and don’t have something quite so ominous hanging in the air. I am choosing to look at this as a way for my children to grow and learn and become even more independent. But boy, does it bite just a bit to let them go so soon.

Brad has had to get used to sometimes having us there and sometimes not. I try to make sure I show him undivided attention and ask lots of questions after the fact. Both kids seem to take it all in stride, but I often wonder if there are long term reprocussions. I suppose only time will tell. But the part that I despise the most is not being able to talk to Jim about all of this. I have finally started to learn that there won’t be a reaction and I will just be disappointed and it isn’t worth it. So I keep quiet and process everything in my mind.

So there it is…a possible silent, hidden positive from this undesirable situation; my kids learn some independence and they learn a lot more than our little family could ever teach them. I realize that I may be missing them, but they are growing and taking in concepts that will only add to their ability to cope in this great big world. They are seeing things that I would never teach them. They are appreciating our times together. They are leaving me behind a little sooner than I think I would normally be ready for, but I am grateful that other families have stepped up and taken them in and shown them a world I can’t. It is a bitter pill to swallow, but one I would eventually find being forced down my throat whether I liked it or not. Maybe having them learn so much now will make it easier when they are completely out of the house. I try not to get ahead of myself, but when the day to day humdrums get to me, I think of my future, our future….obviously I have no idea what lies ahead, but I do wonder how our holidays will be, how our daily interactions will wind up. I am having to let go of Jim, but I am also having to let go of my children. What am I capable of holding onto? What is left for me?

Yep….The Garner Foundation. I know with all of my heart that is my saving grace. I am going to help others. I am going to make a difference. I am going to show my children how to give back. So many help us in so, so, so many ways. I could never repay all of them. We could never repay all of them. But, this foundation will. I know it and believe it. I just wish I could keep Jim engaged and involved for a while longer. He would be so good and so helpful.

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

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)

Give Me Back My Jim Please

Jim and Frances hanging Christmas tree lights, Dec. 2007.

Jim and Frances hanging Christmas tree lights, Dec. 2007.

Would someone please give me back my husband? Even if for a day? Can I please have the man who swept me off my feet with flowers and cards and love letters? Can I feel his arms around me, strong and steady and making me feel so protected and secure? Can we please, please have another day of carefree happiness and conversation? Yes! Conversations where he has an opinion and we have easy banter back and forth for hours.Hours that seem like minutes. A voice strong and clear and gentle and warm.

Frances and Jim having fun at Brad's 5th birthday party. March 2009.

Frances and Jim having fun at Brad’s 5th birthday party. March 2009.

Can I please hear the wisdom in his words and the clearness of his voice? Will you please give me a day to lay under the stars in Vegas again dreaming together of a life yet to unfold?

Who can capture the many talents our children’s father had so they can learn from him and remember he was a jack of all trades? Will you please let them see he was one of those special Dads? The kind that has patience and energy and love and wisdom and talents to share and do so willingly.  The Dad who helps coach their teams and is PTA Vice-President. The Dad who takes off work to attend doctor visits. Give him a day to teach Brad woodworking and firemaking and how to work on a car. Let Frances see that a man can be strong and yet help around the house and iron his own clothes and mend his own socks. Show both kids the man who volunteered at their schools and was a big kid himself. Let them witness his natural athletic ability and give them more chances to play ball with the man who would love nothing more than to do so. Let them laugh at his sense of humor and memorize his laughter.

Jim walking with Brad for his preschool Halloween parade. Oct. 2007

Jim walking with Brad for his preschool Halloween parade. Oct. 2007

I am begging you to let them have their time to learn and remember….remember him as the father he was, not how he is. Remember the nights he was up, holding them and singing to them. Remember the books he read, the baths he gave, the messes he cleaned. Remember his laughter and the twinkle in his eye and the wit in his words. Show them the Dad who would spend hours playing ball or working on a puzzle or whatever tickled their fancy.

Why are you taking their Dad from them? Why are you being so cruel to these innocent kids? Why are you leaving me alone and searching for a way to survive?

Please give me another day of hearing Jim up first thing in the morning, starting his morning routine and getting more done before I thought of getting out of bed than I would accomplish all day. Let me see him in action, installing the sprinkler system in the backyard and building a shed and rewiring an outlet.

Can he please drive us again to a movie that he will be able to follow and enjoy? And can he take my hand and hold it, making me feel special and loved and wanted?

Will you please let me see Jim, with his back ramrod straight, so rigid and proud? So sure of himself and capable of anything…..a leader and a good, good soul.

Jim and Frances having some fun in the snow, March 2009.

Jim and Frances having some fun in the snow, March 2009.

Will you take away the burdens I face each day so I am able to just focus on him and see him for all he was and still is?

Please take him to the 3 states he has left to make it to all 50. Give him back himself long enough to be able to travel and enjoy the views.

Please give him a day to enjoy the awesome children that belong to him; that he raised and showered with affection for so many days. Let him hear them say “I love you” and to say it back. Let him watch their ball games and their school shows  and understand how amazing they are. Let him enjoy their music and their jokes and their laughter. Let him not get irritated and quiet. Let him speak so they can hear his stories so they will be able to recall them to their own children one day.

What can I do to let you give me back my best friend and my biggest fan? How come you have taken him from us? Please give him back, if only for a short time.

Jim helping Brad build a shed. July 2010.

Jim helping Brad build a shed. July 2010.

Stop. Stop taking him. Stop robbing him of his family and his life and his abilities. Stop being so cruel.

Stop making him a victim. He is not a victim. He is an amazing person, with an amazing ability to do crossword puzzles and to remember jokes and  to build things. Please give Jim back his natural smile and quick wit. Please stop robbing him of his natural easiness. He has lots of it and you shouldn’t be taking it away from him. And you shouldn’t be taking him away from his children.

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

Introducing The Garner Foundation

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A little over a year ago, someone approached me and told me I was in the wrong profession. They had watched me at some Alzheimer’s events and had watched my videos. Then they called me and told me that I should be using my drive and my passion to help others. Actually, there was more than one person over the course of about a year who made this suggestion.  I knew what they were saying was true, but I didn’t know how to transition from my current job into starting a non-profit. I can’t afford to just quit my job to volunteer without any income. I wish I could.

Like most founders of non-profits, I had no idea what to do or where to start. So, we met with an attorney. I called people. I met with professional fundraisers and other non-profits. I did research online. In the meantime, I worked full time and have continued taking care of our family. I haven’t been able to focus on the foundation like I would like, therefore it has taken much longer than it should have and much, much longer than desired. Plus, it took over 9 months to get the 501c3 status approved. That’s ok. I can feel the momentum and I can feel something greater than myself pushing me towards the path I am supposed to be on. It has been burning inside of me, unable to be ignored and for those of you who have been reading this blog since I started, you know how and when I figured out what I am meant to do. You know I have been dreaming about this for a very long time. I found my purpose in this world.

I am proud and happy to say THE GARNER FOUNDATION is official. I have a board that is supportive, understanding and who all are passionate about helping dementia families. We have already raised over $7,000. But it will take much more than that to do what we want….

Our first focus will be help with Elder Care Attorney consultations. The plan is to set up a network of attorneys who will help families recently diagnosed so finances can be put in order. This is a very important, but costly step. We were fortunate enough to find a great attorney to help our family, but only after visiting two others who were not qualified to assist us with our specific situation. Part of setting up this program will be educating doctors on how necessary it is for patients to be told it is imperative they contact a specialist in elder care law.

Secondly we are going to offer respite care. Any caregiver knows how important this is and what an impact a break can have on the health of everyone involved. I haven’t found any insurance company that covers this and it is extremely expensive.

And finally, Make a Memory family vacations. When we finally figured out what was wrong with Jim, I had him put together a bucket list. But finances were limited since I needed to save for his care, he was no longer working and I was making half of what he used to bring in. I searched high and low for a way to get help fulfilling Jims’ bucket list and for our young family to take a last, memory making vacation together. But I couldn’t find anything. We eventually did make a spectacular trip to Alaska, but only after we saved for over two years and got some help from family and friends (and even a few strangers). Not everyone is so fortunate and I want to change that.

Each item The Garner Foundation is going to help dementia families with is something I have witnessed firsthand that is needed and will make a difference in the lives of so many. I will still advocate in Washington. I will still write about our story. I will still do whatever I can to promote awareness and educate the public on this national crisis. But I am going to do more. For all of you. Because I can. Because I have to.

A website is currently under construction; www.garnerfoundation.org. You can visit this landing page and make a donation or to sign up to get notifications. There is still a lot of work to do but I am confidant this is my destiny and therefore, we will be able to change the paths of many others who are struggling each day just like we are. Your support and help spreading the word is needed. If you know someone who can help, please share. If you work for a company that can help, please ask them to. If you can’t ask them, let me know who to contact and I will. If you just want to send words of encouragement, please do so. We will need all the help we can get.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (13)