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 (8)

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)

Better Them Than Me

 

Clowning around in 1998. Who knew what would be lurking ahead for us?

Clowning around in 1998. Who knew what would be lurking ahead for us?

Today there was another school shooting. As I listened to the information about what happened on the radio, Frances told me about the lockdown practices they have had at her middle school. I couldn’t help but think back to when I was in school….there was never a drill for a shooter or a thought about someone possibly coming into the school to harm us. Then I thought about the parents who worried about their children when they heard about the shooting and the parents who were unlucky enough to get the call that their child did not survive. Or worse, their child was the shooter. My heartfelt condolences to those families.

Then my mind drifted as I drove and I thought about what it would be like if that happened to us. Don’t we all normally do that? We try to put ourselves into the shoes of others….whether it is a tragedy or winning the lottery…we try to imagine what we would do.

Yet, I wonder, where do we stop imagining ourselves in someone else’s shoes and start thinking it will never happen to us? Isn’t that why people still smoke? Still ride in vehicles without seatbelts? Still drink and drive? Still mix alcohol and drugs? In typical human fashion, we all tend to gravitate to the “I am so sorry that happened to them, but it won’t happen to me” scenario.

I think every single one of us is guilty of this in some shape or form. We have empathy for others going through a horrible crisis, but we stop short of becoming petrified we will also fall victim to whatever atrocity lurks around us. Probably some form of self preservation at its rawest form.

Then, before you have any idea what is going on, you become immersed smack dab in the middle of some awful thing that is ruining your life and the lives of your family members. In my case it is Younger Onset Alzheimer’s. And it sucks. Big time. As I have mentioned many times, I have friends and family that are helping out and doing whatever they can to make this tough road a little smoother. But no matter what they do, they can’t REALLY help. They can’t cure Jim. They can’t stop the progression. They can’t save our children from losing their Dad. They can’t change the fact Frances’ and Brads’ childhoods will be encased in Alzheimer’s, Alzheimer’s, Alzheimer’s. They watch, they listen, they do. Then they go home and get on with their lives with their healthy families. They see us and are grateful they aren’t us. They know it could happen to them, but think it won’t.

I am not here to be a “Debbie Downer” but let me point out something to each of you: as you get older, the chance that either you or someone you love (parent, spouse, sibling, friend) will succumb to the horrors of a dementia is unbelievably high. Unless a cure, a vaccine or some type of treatment is found, we are all going to feel the excruciating pain and agony of dementia. And the financial burden. Which, in all honesty becomes so consuming you find yourself unable to focus on the person you care so deeply about because you are just trying to survive. And when your loved one is diagnosed, it will be too late to pour in money and try to have your voice heard. If you want to save them or possibly yourself, the time is NOW to do something.

Yes, we all feel like the bad stuff is horrific when it is happening to someone else and we are saddened, yet we are confident it won’t happen to us. What are you going to do when it does?

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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)

Blessed to find lots of Rainbows

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Why I am so blessed when I am going through the roughest time in my life:

1)   I have two absolutely amazing kids. I try really hard not to brag about their awesomeness, but when I need to find something positive going for me, most of the time they are all I have. They love me unconditionally when I am not the best Mom and they help a tremendous amount around the house. They do well in school, participating in lots of different activities and are not slaves to the TV or Xbox. They love nature and care about our world and animals and they both love learning. They still snuggle with me in bed and give me hugs and tell me how much they love me. Yes, I am blessed in ways that money could never, ever buy.

2)   I have friends that have not forsaken me. I cry. I say inappropriate things. I get too loud. I drink too much. I forget things I am supposed to remember. I am now a moody, crazy woman. Yet, they still come around to check on me and look out for the kids and continue to ask how they can help. The world can be a big, scary, lonely place if not for the comfort of a friend or two. Even better: the friend who can be crass and make me laugh by saying the most politically incorrect statement that is funny because it is true. Not only do my friends take care of me, they bring Frances and Brad into their own families and show them the meaning of family and friendship and allow them to have second and third homes. Sometimes they magically appear to help with little things that need to be done around the house. The front yard weeded. The old paint cans disposed of. Lights hung in the bathroom. Sometimes they look out for Jim; offering to take him for walks and giving him rides to play tennis. Each little gesture adds up to enormous support that keeps us afloat.

3)   My children attend great schools. They have principals who care. Teachers who care. A place they can disappear from their “real” world for a while. Brad’s school is doing a fundraiser this Saturday morning. They have been planning this fun run for months. One night, about 3 months ago, around 9 o’clock there was a knock at our door. There on our porch was one of our neighbors, the PTA treasurer. He had come straight over after a PTA meeting to apologize. It seems this huge endeavor was inadvertently scheduled for the same morning as our upcoming Walk to End Alzheimer’s. I have been told by numerous sources, all of whom were present in the meeting, that when it came to light that the two events were coinciding and it was too late to change the race, everyone felt horrible. It was decided that I needed to be told right away and we needed to know that they support our cause 100%. To counteract the fact the school will not be able to participate in the walk like they did last year, they have discussed Alzheimer’s Disease on the morning announcements, they have made donations to our team, they made the t-shirts for the race….PURPLE (the school color is blue), and they have reached out to me over and over again to support our family and remind us how much Brad means to them. In a time that I am feeling the pressure and stress of our situation, there is hardly a way to express the comfort that comes with knowing others are looking out for our children.

4)   My children are active in sports and music and have teammates, coaches and instructors who help us whenever they can. I have had to rely on other parents to give both kids rides to practices or games. I have had to sit in the bleachers while Jim makes some inappropriate comments and search their faces to find they have (thankfully) no reaction. Sometimes, they see I need to be left alone and they let me sit in my chair, watching the game and allowing me to get lost in my own mind for a while. Sometimes I sit quietly, not even able to cheer, but I hear them, loud and clear, cheering for me. I have coaches who do not hold the fact I sometimes cannot get them to practice against either player (some coaches have been known to withhold playing time). Brad’s team is again participating in the walk for the second  year. They are very busy families, and yet, they carve out a precious Saturday morning to show us how much they love us and care about us. How do you thank someone for that?  You can donate to their team by clicking here.  Both music teachers patiently forgive me each time I have to call and re-schedule a lesson. They offer tickets to music shows and bring smiles of joy to the kids’ faces with jokes and the shared love of a good piece of music. 

5)   I have parents who drive 4 hours each way to come help me with the kids and Jim. They call me almost every day to check on me. They ask about the activities we are doing, they take the kids for pizza and ice cream and if needed, remind them of their manners and chores. I never have to worry about letting them down…they have loved me when I wasn’t very loveable and they have supported me when I wasn’t very smart. They help me “parent” when I need the break from being a parent. They listen without judgment. They hug. They cry. They show up and keep showing up. They are above all else, my rock.

6)   I have a home to protect us from the storms. This home is located in a village that surrounds us with support and help.

7)   I have a job.

8)   I have my health. As I watch Jim decline, I become more grateful for my own healthy mind (although there are times that may be debatable) and my own healthy body. I worry my health will suffer with the stress I feel on a daily basis, but I am hopeful that I will be strong enough to make it through.

9)   I have new friends. I have made dozens of new friends through our advocacy for Alzheimer’s Disease and through my blog. I have heard so many stories and had so many words of support sent our way I have learned without a doubt we are not alone in this fight.

10) I am alive. I am blessed to just be awake on this side of the dirt beneath my feet. I sometimes forget to cherish the fact I am sharing in the lives of my children, my brother, my parents, my friends and Jim. There was a time in my life I was worried about living long enough for the kids to know me. Now I am grateful they do and I want more. I want them to know me with their children.

Sometimes it is extremely difficult to remember how blessed I am. How blessed our family is. Sometimes, I cannot see the sunshine in our lives but I am only focused on the black cloud I seem to be immersed in. Sometimes, after the rain shower, a rainbow emerges to light the way.

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posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

Sink or Swim Time

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Yep. I am still in a bit of a funk. I am fully aware of my melancholy, yet I just can’t seem to pull myself into a brighter mood. There always seems to be something going wrong or something getting broken, misplaced or needing to be done (house painted, porch replaced, etc.). I swear, sometimes I think there really is a dark cloud that lives over me. I could really use a ray of sunshine. Not just for a moment, but for an extended period.  It is a never ending cycle and I just need a break. A break from decisions, from work, from being a “single” parent, from worrying about Jim and his future. While I say this, a tiny voice is on repeat: BREAK? WHY SHOULD YOU GET A BREAK? YOU HAVENT EVEN GOTTEN TO THE REALLY HARD PART YET!

Yep, I know what is headed our way and I sometimes wonder if that makes everything personified. Even so, I am desperate to raise the children in a positive environment. Yet, I am not sure there is a lot of positive vibes floating around when I am such a grump. I know there are some people who follow our story who have lost loved ones to something other than Alzheimer’s. I think when you lose a loved one, it is a universal understanding and bond that is formed with others that have gone through the same pain. But there is something about Alzheimer’s Disease that seems to be a little crueler. I do not, in any way, mean to disrespect those that have lost someone to cancer or any other sickness. It all hurts. It all makes you lonely and sad and the loss itself is the same. But I think the costs associated with the long term care, the frustrations of “babysitting” your spouse or your parent (or sibling) for such an extended period of time, the pure hopelessness felt every time you visit the doctor and there is no treatment plan therefore no hope, the mourning that is done day in and day out and then the overwhelming lack of time to mourn as you are embedded in the routine of worry, exasperation and financial struggles that can ruin your family forever. I realized just a few days ago that part of my problem was the fact I need time to let go of Jim and to lament the loss of our marriage, our family, our dreams, our relationship and come up with a plan to help the children do the same. But I don’t have time. I am not allowed or able to take the breather that usually comes with the loss of a spouse. Because I haven’t actually lost him. He is right here. Playing tennis. Eating dinner. Walking the dog. But he isn’t. He is so not here. And I am so not able to truly allow myself to let him go. So here I am, treading water, wondering how long I can keep it up.

I need help. Help fighting this war. I need to know that there is something better coming. My husband is dying from a disease that has no cure and no real treatments. It runs in his family. I am asking EVERYONE to help us. What can you do? You can write your Congressperson. Don’t ask them for more money for Alzheimer’s research, DEMAND it. Demand they listen.  Here is a link to a previous post about why you should help us advocate. Please ask them to support the Alzheimer’s Accountability Act. For more information click here. Then follow up with them and let them know you are paying attention!

When I follow the news and listen or read about proposed spending on things that I just don’t feel are as important as finding a cure for a disease that has been around over a hundred years and yet we are no closer to keeping someone afflicted alive longer or providing a way to cure it or prevent it all together, I just want to scream. Not only are we not providing what is needed for the patients, we are doing huge injustices each and every day to caregivers. Caregivers are getting worn out, used up and kicked to the curb over and over again. Each person who is responsible for an Alzheimer’s patient, must not only figure out finances for care and lost wages, actual care to be provided, often times losing their own jobs, and they must try to navigate through mounds of paperwork and technical terminology to make sure every “i” is doted and “t” crossed so they MIGHT get some sort of help. It is a disgrace how much burden is added to people who are struggling to come to terms with the fact that someone they love so dearly is dying.  Then, to add salt to the wound,  they are forced to prove they can’t pay for care or told they did something wrong and must re-submit the same paperwork they have already submitted 2 times or they must spend down the retirement they need to survive themselves in order to get help with care for their loved one. IT IS INSANE HOW THIS SYSTEM IS SO MESSED UP!!! None of this process makes any sense and yet, here we are, The United States, the leader of the free world…..definitely NOT a leader in the fight against Alzheimer’s Disease. Why? Can someone please explain to me why this isn’t more of an urgency and why we are having to fight so hard to be heard? Maybe then I can relax and I can have faith that things will be better for Frances and Brad.

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)

An open letter to caregivers

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This is an open letter to all caregivers. I want to answer some of your messages you have sent me. I apologize for not being able to respond to each and everyone individually, but I want you to know that there is usually a common theme in all of the notes I receive. I also want you to know how much I appreciate you taking the time to share your stories and to send me tidbits of info. and advice. I hope this blog helps you on your journey.

I am not in a super good place right now. I go through spurts. Sometimes I see a positive future and feel like I am making a huge difference. Other times I only see how awful our lives are right now and how terrible they will be for the foreseeable future and beyond. I think about watching Jim decline and dealing with the financial woes, the emotional upheaval and the overwhelming sadness that envelopes us. I sometimes scream at the top of my lungs, “I can’t do this anymore.” I never say it isn’t fair, I just say I can’t do this anymore. When in reality I can, I just don’t want to.

I am often told to take care of me. Very good advice. But, I am not sure how I am supposed to do that. Am I supposed to quit my full time job that causes me stress? Then I could exercise daily and have time to fix healthy meals and time to take naps and have leisurely lunches with friends to make sure I am relaxing. Am I supposed to hire someone to come watch Jim and take over the household? I understand the sentiment behind the words. People care and sometimes the only thing they can offer is encouragement to take care of me. Easier said than done, knowing I need to follow the words of wisdom. Each of us needs to heed this advice, once we figure out how.

I have realized a few things about people. One being that some people just suck. Big time. I am not trying to be negative here and I am not trying to call any one particular person out. But I read story after story of promises not kept, hurtful words said and the complete isolation some caregivers have come to face. You know what? Even with all of the wonderful support and help I have received, I have the same things happen. I try really, really, really, really hard not to dwell on such things. Most of the time I am able to put a positive spin on different situations…..like when the person “bought” a piece of furniture from us, in the process we ruined our kitchen countertop moving it out of our house, and they never paid. When the kids asked me about it (many times) I explained to them it was a great $50 education. When Brad said we should call the cops because that is stealing, I reminded him that sometimes it is better to learn a lesson than to worry about how you learned the lesson. Did I mention how hard this is sometimes?  There have been “friends” who have completely disappeared. I just don’t write about them in my blog…but I have had it happen too. I have the friend, who I once was close to, even taking a weekend vacation together, who now sees me and doesn’t speak unless I do first. You are not alone in this. I want to remind you to not focus on those that have abandoned you in such time of need, but to appreciate even more those that have surrounded you in love. If you look hard enough at all of those encouraging you and helping you, the vanished “friends” will fade from your view and your worry all together. This takes an enormous amount of effort. Just like everything else, sometimes the vision is easy and sometimes not so much. Focus on all that is good, even when there doesn’t seem to be much.

Last week I had a really, really bad week. For lots of different reasons. Then I got a terrible scratch on my shin from the cat while I was trying to give him flea medicine, I burned my arm quite badly AND got in a teeny tiny fender bender. ALL IN THE SAME DAY. It was also the same day Frances won her student council election and the same day a mysterious box of chai tea (I don’t drink coffee) was left on my porch. So, at the end of the day, I could focus on the 3 horrible (and a little painful) reminders of how bad my life is right now, or I could celebrate how awesome it is to have a friend who would go through so much trouble and a daughter who worked past her fear of losing and became class president. Again, not easy, but one would take me down a dark path that would only prolong all of the bad things and one would help me raise my children in a happier home. The choice was mine. This is not to say that sometimes I don’t sit and focus on all the bad, but I try to be cognizant of the good too. I think I am really just having to train myself. Otherwise, I am scared of where I will end up and in turn where my children will end up.

Some people vanish only to appear at just the right moment. Just when the small circle of friends you feel like you inundate way too much with your sob story have done their part and you are scared if you call them one more time it will be too much,  a random note, e-mail, dinner, invite, hug, phone call will happen almost miraculously from a “lost” acquaintance.

If you can picture viewing a moving black circle from above. At one time I felt like I was in that circle, but it was HUGE. Wide open. Ready to go and conquer the world. Anything was possible and there were lots of other circles coming and going. Some got attached and came along for the ride. There really was just lots of circles always around. Some came and went. Through the past year or so, I visualize that circle as growing smaller and smaller, with fewer and fewer other circles in view. Just a few. And as my circle grows smaller, my mindset changes and my focus changes. Frivolous things become just that, frivolous. Mean, disrespectful, untrustworthy people become easier to spot. Good, reliable, steady comrades become more precious than gold. I worry terribly about the friends I have getting worn out, tired and bailing if this situation continues on for years and years. That is why I try really hard to “spread the love” in terms of who I call and how often. It is understandable. I ask you to remember back to before the diagnosis. What kind of friend were you to someone that went through an ordeal? Did you think about calling or stopping by, but you just didn’t know what to say? Did you intend to but never had time? That happens. Most people have the best of intentions. Often times they just don’t know what to say, how to say it or when to say it. I can tell when I see someone who is uncomfortable, not because they don’t care, but because they do and they don’t know what to say. Give those people a break. Start the discussion. Let them know you have missed them and if they want to help, they can just come and sit with you. Maybe they don’t want to hear every detail of how bad your life is now, but they just want to be your friend. Let them. That is who they are and how they can help you. Don’t try to force them to be someone they aren’t and in the meantime you will re-kindle a wonderful relationship I am sure you really need at this time.

I give you all of these words of wisdom in the hopes that I will be able to give you a different take. It is hard. Hard to see outside of our window of despair. Just try. Then let me know how it goes. I will do the same.

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)

When will we be NORMAL?

Brad helping with dinner tonight since I didn't get home from work until very late.

Brad helping with dinner tonight since I didn’t get home from work until very late.

Frances has mentioned several times (remember, she is 13) that she just wants to be “normal”. Yeah. So do I.

I don’t want to be consumed by Alzheimer’s Disease 24/7. I really don’t want to be constantly asking for and accepting help from so many. I don’t want to watch my husband, my soul mate, the one person who actually wants to put up with my shit turn into a shell of the man he once was. Sometimes I watch him and I feel so sorry for him. He has the outward demeanor at times of an 85 year old but without all the fun of having lived those productive and memorable years.

Watching him in the hospital last week was horrible. Just horrible. I know there are millions of people who have witnessed such pain and have felt such sorrow, but when you are there, in the moment, living and breathing the confusion and the depravity of this illness, it becomes REAL. Real beyond “knowing” what is coming. It was here. I was smack dab in the middle of a storm and I was not prepared or ready. I am not sure I will ever be ready.

Jim has bounced back to the point of being about at his baseline. Modern medicine really is amazing. To see him two weeks ago not even able to stay awake for longer than 5 minutes or to know where he was or who we were and now being able to stay home alone again is incredible. The biggest issue so far has been the disappearing dog food bowl that was found 24 hours later in the cat food bucket. But this snippet of what is to come made me realize that there really is no preparing for this.

It has been a rough ride all the way around. Rough on the kids. Rough on our friends. Rough on our family. Rough on me. Rough on Jim (I am going out on a limb here because he really doesn’t seem affected at this point.) I am aware enough to know that this same type of thing could happen over and over. I worry how it will affect the kids. How will it affect the desire of friends to drop everything to rescue us? How will it affect me? I can tell sometimes that I am immune to the situation and show little emotion at times that I should.

During all of this, I have realized how completely broken many aspects of our healthcare system are. You read articles about this, but when you are told that because your mentally impaired husband doesn’t have a physical ailment, he cannot qualify for home health aid or Medicare won’t continue to cover rehab and you can’t find any programs for someone his age (52) because he is too young. Well, I wish someone would tell his Younger Onset Alzheimer’s Disease that he is too young to have it. Wouldn’t that be nice?

So let me paint a picture for you: my husband has a mental disease that is not going to get better. We have two children, ages 10 and 13. I work full time. We are middle class. (which means we do not qualify for programs that are based on income) He is retired military and for those of you in the know…I have started the process of trying to qualify for Aid and Attendance (OMG, the paperwork, the waiting, the formula to try to figure out if we will qualify) It seems that each day I find out something else to worry about and then I must make a conscious decision on whether or not it is something I have control over and therefore something I can try to mentally and emotionally ignore. Jim is for all intents and purposes no longer a participating “Dad”. Before you get all upset about that statement, think about what a Dad does in the sense of the word and think about if someone in the early stages of dementia can do those things. Oh, and walk a mile in my shoes. Then you can say something. So, I am responsible for 3 other people besides myself. Plus the bills. Plus trying to keep up with laundry, housework, yardwork and meals. Plus my job. Plus the kids schedules and schoolwork (yes, I forgot to sign an agenda last night). Plus the myriad of things that any “normal” family faces each day. I have people tell me all the time they don’t know how I do it. I have come to realize that whatever we are each faced with at any given time is what we can do. For some, it is dealing with an ex that is dragging them through the courts again. For a few, it is figuring out which contractor to use for their new addition. For others, it is dealing with a teacher that seems to be treating their child unfairly. Whatever is causing stress, that is your thing at that point in your life. This doesn’t mean it will always be the only problem you have. We all have our own difficulties to endure. Thankfully, they come in a variety of sizes and at different times, which allows us to shelter our friends when their burdens are much worse than ours. Right now, my burden is making an impact unlike many deal with. But I can weather through with the help I receive. Someday, I hope, I will be on the other side and I will be offering shelter to a friend who will be needing refuge. In the meantime, I am struggling to find my way through all that seems to be coming at me at once. My priorities are changing. My focus has already changed. My determination and grit are still just as strong as before. Only now I don’t have my partner to help me. I do have unbelievable parents. I am surrounded by wonderful friends.  I have two children who amaze me. They are not perfect by any stretch of the imagination, but my goodness, they sometimes step up in ways I never would have when I was their age. And it makes me humble and it makes me proud.

Yes, I want to be “normal” too. Whatever that is. A simple life with my biggest worry being what I am fixing for dinner or what we are doing that weekend.

Frances walked in the rain tonight while I was at work to get me a delicious cupcake. She bought it with her own money and decorated the box for me.

Frances walked in the rain tonight while I was at work to get me a delicious cupcake. She bought it with her own money and decorated the box for me.

 

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posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (11)

Rehab Follow UP

Jim working on a puzzle and a word search at rehab. Thank you for the picture Rona Altschuler.

Jim working on a puzzle and a word search at rehab. Thank you for the picture Rona Altschuler.

Thank you for all of your support, love and concern. What a long, whacky, scary, emotional week this has been. I am exhausted. Literally. I apologize, but I must keep this one short, but know I have a LOT to say!

First of all, the doctor from the hospital called Monday to explain and apologize for his error. It seems after reading so many comments and messages this is an all too common problem and definitely one that needs to be addressed.

Second of all, Jim has been doing splendidly in rehab. He is just about back to his old self. I think he will make it pretty close to his baseline. His short term memory is still much worse and he is still confused a little, but overall, the difference is unbelievable. I honestly didn’t think last week at this time he would ever be coming home again. So glad I was wrong! He is slated to be released THIS Friday! He has been working hard and has improved so much, they are kicking him out. He had an infection in his lungs from silent aspiration. Scary stuff. As soon as the antibiotics really kicked in, he was a new man.

Many have asked why Jim isn’t on Aricept or Namenda. He was. I wrote about why he is no longer on these medications here: We Are a Team!

As happy as I am that Jim is recovering and doing so well and finding his sense of humor so easily again, I am scared. Seeing him the way I did, going through the emotional, gut wrenching journey with him in the ER and the hospital, seeing him so lost and confused….it is too much to play over and over in my mind, but for some reason I do. It is awful. I try not to, but I can’t help it. Witnessing the kids see their father in this state was utterly heartbreaking and  awful. I worry about what will happen if this type of thing happens again. What if I don’t come home in time to find him? He would have died. DIED. Like, forever gone. Do I now need to hire someone to stay with him? How will I pay for that? I am stressed to the max trying to figure everything out. Stressed actually isn’t the right word. Completely freaked out is more accurate. He is my responsibility just as much as the kids are. But I don’t know yet what the right answer is for our family. He is not ready for a home yet. There is a day program in our local area that would be great because they do activities with patients all day, but you must be at least 55 years old. Jim is only 52, so alas, he is too young. There is another day care place, but they are private pay and medicaid. If I was going to be able to pay, I would just hire someone to come to our home. The ideal situation would be to send him to some type of sports camp all day, every day. He would be so happy and have such a good quality of life. Volleyball, softball, tennis, bowling, basketball, racquetball, soccer…it wouldn’t matter. He would do so well. That would be my ideal situation for him. Not sitting around trying to figure out what to do. Not pacing the house searching for something he will never find.

Yes, I am so very happy, But at the same time, I am very worried.

Thank you again for all of the messages and the empathy. I am so grateful!

posted by Karen in Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (15)