Strong Girl

 

Cliff Jumping in Bermuda, 1993.

Cliff Jumping in Bermuda, 1993.

I was held up at gunpoint. I was on my way from my car to my apartment, walking with the man I was dating and suddenly there were two guys with ski masks over their faces pointing guns at us asking for our stuff. I remained calmed. I looked at the gun, less than an inch from my eyes, and thought to myself, “it looks fake”. I knew well enough not to ask the person holding the gun if it was. I knew there were people working out in the fitness room less than 20 yards away. As my date was fumbling with his wallet, I was asking them if I could just give them my money so I wouldn’t have to go through the hassle of getting a new license and replace everything in my purse. No such luck. As I watched them coward away, I memorized what they were wearing. I told my then boyfriend to go in and call the police and headed back to my car to try to find them (I know, I know, I have been told numerous times what an idiot I was). As a single female, I had followed all the precautions: apartment on the second floor, overlooking the pool, next to the office, etc. It didn’t stop an event that changed my life and could have ultimately taken it. I learned  you can try to follow guidelines and do what you are supposed to do but it doesn’t alway mean things will turn out the way you plan or the way you are promised. I was calm, cool and collected until after the police left. Then I couldn’t leave my apartment after nightfall for months. I would stand in my window and cry. I was haunted by the sheer brevity of the fact a slip of the finger could have ended it all. I was not the strong woman I had been for 26 years. I was living in my own prison. I learned that night the guy I was going out with wasn’t for me and ended things fairly soon after. Three months later, I met Jim. And my life was again changed. But changed so that I regained my strength and my ability to be strong. I eventually was even able to watch shooting and guns on TV and movies. All with the patience and understanding and support of a savior.

When I was 24 I packed my car and drove from North Carolina to Las Vegas by myself (before cell phones!), not knowing a single soul. I moved there for a job and stayed long enough to meet Jim. Again, following the rules….called my parents each night, let them know where I should be the next day, didn’t do anything crazy while driving across this beautiful land of ours. At the time, it seemed a normal course of action for me. I would not have respected myself if I hand’t gone. The person I was then must still be inside of me…right?

Aren’t we always taught to follow the rules and everything will be ok? It’s not. Jim didn’t do drugs. He was a good person. He worked very hard and was good at his job. He was quite a catch. Jim was safe. He was a good provider, he was a good man who would make a good husband and a good Dad. I took the safe road. He helped others and gave more than he received. Why is this happening to him? He was a much better person than I. He was a better parent. He was an all around better contributor to society. How is it he is the one being taken early? The unfairness is blatant. And now I am fumbling daily to find my footing and keep some sense of perspective that will allow me to help him navigate his new shortcomings and help our children remain intact and keep our home and figure out dinner and keep up with laundry and make sure the schedule is updated and homework is checked and everyone has taken a shower and eaten and is OK. But am I OK? I don’t know. I just don’t know.

My point of telling you these stories is to remind myself I am strong and independent and capable to be on my own. I sometimes forget who I was before I became a Mom and then a caregiver to Jim. What do I enjoy? What am I capable of? Who am I now? Who will I be when all of this is over?

I am lost. Really. I know when people see me they think I am doing so great considering our circumstances, but I am not. Not by my standards. And that is the problem. My standards for myself are pretty high. Always have been. But I can’t do it. I can’t be the person I was. I can’t do it all. I can’t keep my mind clear and focused and be the best I can. I am the best I can right now, but it isn’t my personal best and it isn’t acceptable. And because I know this, it bothers me.

There are days that I have so much I need to do, so much running through my mind, that I just shut down. I don’t cry and I don’t feel sorry for myself, I just shut down. I don’t do ANYTHING. And then I am upset with myself for not doing ANYTHING, and it becomes cyclical. Even worse is the fact I am completely aware of my new shortcomings.

I am strong. I mean, I am a strong, independent, capable woman. Or, I should say I was. When Jim and I met and married, I eventually made more than he did. It was our decision for me to stay home with Frances and try different gigs out of the house so I could be a Mom first. We had enough to live on with just his salary and we were both fine with that.  It was never an easy adjustment for me and Jim was really always the better parent, even though I was the one home all day with the kids. He was supportive and understanding and not once complained. When I would meet him at the door with a kid and tell him he was five minutes late and he was on duty, he loved it. He loved being a dad.

Even now, as he declines into his own abyss, all he continues to tell me as he cries, is that he wants to watch his children grow up. As he can’t recall their names, he knows he wants to be there to be part of their world and witness their growth and maturity.

I can’t take it. It is unbelievable painful to stand helplessly by as he declines and becomes a complete stranger to all of us who love him.

Just as difficult is to figure out where I fit into all of this…. What is the right way to navigate all that is thrown at me daily while staying his wife, staying a mom, staying a friend, staying ME?

I realize that I am morphing into a whole new entity. I don’t care about going out anymore (HUGE change for me). I don’t care about the latest movie or TV show. I don’t care about keeping the house clean….yikes. So embarrassing. My parents came for a visit recently and I didn’t clean one thing. NOT ONE THING!! Not a bathroom. No vacuuming. No dusting. Nothing. I have had them visiting me since that infamous drive across country and there has NEVER been a single time I didn’t clean and get ready for their impending visit. Never. Now, I can’t seem to find the wherewithal to do much more than change their sheets, which I didn’t do until after they arrived. Embarrassing and telling.

No, I am not the old Karen. But I know I am not the Karen that eventually will be. I am in a holding pattern. Not sure I am crazy about the Karen I am, but I have to accept there are major changes and events going on and I have to give myself some slack. Not an easy task. I am trying. I am working constantly on finding me while holding onto the task at hand.

I am grateful for the strength I possess. I am so very, very grateful to friends who understand and accept my changes. I am indebted to my parents for continuing to love me unconditionally. How are people who aren’t born with an inner ability to find that power and resilience able to handle this horrible journey? I don’t know. I am barely surviving and can’t imagine being able to without my natural fortitude.

Stay strong. Stay you when you can and when you can’t, forgive  yourself and know you will be you again someday. Maybe a different you, but a stronger and more resilient you. Repeat.

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)

I appreciate what I have…but Miss what I don’t!

i-am-thankful-for-my-struggleThere is a little boy who is dying tonight. He is two years old and he has cancer. I don’t know his family, but I still hate what their family has endured and what they will continue to endure long after their precious son has left them. I see updates on Facebook from the family. We have mutual friends and as I have watched their fight and witnessed from afar their heartache, I have pondered life and the unfairness that happens in our universe. I see Jim, struggling to keep his dignity and to stay a dad as long as he can. And I read stories about parents losing their children. If I could somehow make it so that I had to endure the frustrations and constant sorrow I am faced with each day to save a child, I would. But as much as I wish my suffering and Jim’s suffering could abate the pain felt in another home, I know it won’t. I know I will continue to watch as Jim fights his own battle the best he can. I am only a witness to the things I recognize as more heinous than watching Jim succumb to the plaques and tangles multiplying in his brain in another family…. Losing a child would be one of them. I am so, so grateful for Frances and Brad and somehow, dealing with the pending death (albeit not tonight or tomorrow) of my spouse, I cannot help but be so grateful for having them with us and in seemingly good health. It isn’t lost on me that I may be suffering a loss, but it could be worse. To the parents who are losing a child or who have lost a child, I am so sorry. I wish I could somehow take the suffering our family must endure and replace yours. I suppose it would make all that our family is going through worth it….if we could find some good in our pain by easing the burdens others face. I sometimes wish Jim would just die. Now. I don’t really want him to die, but as I have mentioned several times, I don’t want to be part of what is coming. It is this unbelievable awful thought process: I don’t want Jim to die, but I don’t want him to continue to decline in cognitive abilities and don’t want his children to watch him suffer in a way that they can’t possibly change or help in any way. I know that Jim doesn’t want to become the person he is becoming. It can cause so much internal stress thinking about it all, the best way to handle it can be to shut down. But dementia patients need you there for them for years, so you are not allowed to shut down for long. You must stay in the present, to help them and in my case, help our children. The irony cannot be missed: my partner, my go-to person is the patient. The stress and the heartache and the gut wrenching thoughts would be eased under normal circumstances because Jim and I would discuss them and he would be my sounding board and my help. I have come to realize with much clarity that even marriages in troubled times have two partners. Partners that can communicate. Partners who can help with whatever needs helping; dishes, yardwork, decisions on finances, disciplining the kids, vacation ideas, what to do with free time, what to watch on TV, what to do about life situations that happen with friends and family, co-workers, cable companies, etc. I have opportunity to sit back and watch relationships now with a different thought process and a much different appreciation. Even my friends who complain about their spouses (and as they do they usually apologize to me and tell me they shouldn’t be complaining to me of all people) have to recognize the simple pleasure of having a partner who is there, in the moment and who can carry on a REAL conversation and even if they are driving you crazy with the point of view they have, at least they have a point of view. At least they can listen and comprehend you are upset or need to vent or have ideas that they are helping you mold into realism.

The big question is would I suddenly appreciate Jim if he miraculously went back to the man he was 10 years ago? Would I find the fact he was able to be a husband and a father in such a magnificent way enough? Would I be content and appreciative? I certainly like to think so.

Since I am reminded daily there is no cure and there are no treatments that can correct his decline, it is a moot point. But I think it is reason enough to pause and appreciate where he is now and how much we have to be thankful for. Starting with two amazing kids who continue to bless us with love and lots of great memories. And a man who doesn’t give up and who tries his best, each and every day.

Frances and Brad in Alaska, July 2014.

Frances and Brad in Alaska, July 2014.

 

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

Trapped Alive

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Sometimes when I write this blog, I have to censor myself. I don’t do it to protect myself, but to protect my kids, my family, or Jim. Sometimes it is because the reality of this disease is so harsh, so burdensome, so outlandishly crazy with the fact that more isn’t being done to help that I have to abstain from writing what I really want. There is a novel being written in my mind that would completely shock some and others would be like, “Yeah, I could have written that years ago.”

I am going to attempt to walk a fine line and discuss where I am and where Jim is. Actually a small facet of those.

I feel trapped. Trapped like a caged animal desperate for release. Trapped in a world I have little control in. Slammed against brick walls and thrown into a dark abyss of pain, selfishness and emotional upheavals that are unbridled and uncontrollable. I am stuck with Jim. I am stuck taking care of him and worse; I am stuck watching him become someone I don’t know. I am MARRIED to a person that can no longer use a hotel key card or who doesn’t understand that you can’t put the Costco cart inside of the World Market store. I bare witness to the mumblings and the utter disregard for clean clothes. I know it is politically incorrect to say these things, but I know I am not alone. I know that there are others who have these same thoughts. It is ok. It has taken me a long time to accept this. It’s ok because I don’t ACT on the thought of feeling trapped and suffocated. I am staying. I am here, doing the best I can. This is me, being me. Even when the kids were younger, I would sometimes be waiting for Jim at the door, ready to hand over the reins so I could have an hour of “me time.” And I love being a Mom and love being with them. But I have always needed my space.

When the kids were just babies I would read article after article on how to be the perfect Mom. You have seen these in parenting magazines….How to Raise a Giving Child or What Every Mom Should Do To Prevent Tantrums. I could never live up to the examples that were set in print. Now that I am a caregiver to my husband, I sometimes fall into that same old habit of trying to be the perfect care provider all over again. But this time, I am a little more mature (just a little) and I am being forced into a corner that will either allow me to excel or set my life on an uncontrollable  spiral. But this time, there are clear repercussions if I fail. My children will suffer at my shortcomings and so will Jim. If I don’t do this “right” I could lose the most precious and wonderful things in my life: my children.  I am choosing to excel. In order to do this, I must find a way to accept my faults. To accept my faults, I must be honest. And that is where this revelation comes in.

One of the things that Jim and I did well was accept each other. Sure we each had our little things we bitched and complained about, but for the most part, he let me be me and I did the same for him. Part of my appeal to Jim was the fact I was so independent. I loved being with him, but I liked my space. And so did he. It worked well. We did stuff together and we did stuff apart. He played sports, I hung with friends. We worked around the house together and watched movies together and then we would travel separately for work and it all came together nicely. Now, not so much. He is home. All. The. Time. I am told when I am not with him, he constantly asks where I am, when I will be back, looks out the windows and front door and paces. I haven’t seen it first hand, but I know this is typical behavior for an Alzheimer’s patient. But it isn’t typical for me. Or for Jim. I don’t do well with feeling suffocated. I need my time. To do whatever. It doesn’t even have to be anything major. Just going to the store by myself or walking a trail by myself or catching up with a friend makes a huge impact on my mindset. Over the holidays, I was basically attached to Jim at the hip and without me realizing it, I was subconsciously revolting. It is who I am. How can I change this? It isn’t cool to say you want some space but I NEED my space. I need my time to do whatever I want.

I have so little time left with Jim, shouldn’t I want to be with him 24/7? Shouldn’t I want to take him in; his smile, his laugh, his eyes, his hands, his everything? Shouldn’t I want to be there for every joke he still cracks and to guide him through his day?

No. I can’t. It isn’t part of my personality and even more to the point: I DON’T WANT TO. It is too hard. I hate seeing him this way and he still has a long way to go. And this my friends is the catch 22. I want to be with Jim, but I don’t want to be with Jim. There is a constant ebb and flow of emotions….. the reality is simple: I want to be with the real Jim and right now I am settling for an impostor. He has such a great attitude and still tries so hard and gives so much of himself….but he isn’t himself and sometimes it is too much for me to see him in this state, however amazingly good it is for someone at this stage of the game. It is such a far cry from the sturdy, autonomous, handsome man I have lived with since 1996. It cuts me to the core and sometimes I am just unable to simply be ok with the  man I am currently living with.

So, here I am. Being honest. I am not going anywhere. I am staying put, but in my mind, I am sailing the islands of the Caribbean or sitting on a dock overlooking a mountainous lake while reading a book or taking in the Northern Lights (on my bucket list) or snuggling with the man who always made me feel like a million bucks until he couldn’t anymore. And now it is up to me to make sense of it all just to stay sane enough to carry on.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (19)

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)

Alaska!

Posing by a gushing waterfall in a rainforest in Juneau.

Posing by a gushing waterfall in a rainforest in Juneau.      July 2014.

First things first: Our trip to Alaska was great. Great in the sense we got away from everyday life and got to see some absolutely AMAZING sights: Glaciers, Bald Eagles, Orcas, Humpbacks, Otters, Seals. Just breathtaking mountains of snow, trees, mist, clouds and water all rolled into one.

We had never been on a cruise. Actually, no one in our family has ever really wanted to go on one. When we first started talking about visiting Alaska, we were going to fly there and do our own tour of the state. Prices and Alzheimer’s Disease changed our agenda. After much thought and discussion, I decided (notice the “I”) we would forgo our previous plans and go with the cruise option. We would join all the other tourists at the port of calls and try to find our way among the masses versus venturing out on our own for parts unknown.

I have been asked several times since our return if Jim enjoyed himself. Yes. Yes he did. As much as you can tell, he did. Since Jim is no longer showing much emotion or throwing out many comments, you must listen and observe closely. As my Mom told me, “That is the most excitement and emotion I have seen from Jim in a long time.” She was right. As we emerged from the rainforest we were touring, into the sights of a huge, beautiful, blue glacier, Jim exclaimed, “Oh wow.” Perfect sentiments, but unusual at this point with him.

Searching for moose outside of Anchorage, Alaska. June 2014.

Searching for moose outside of Anchorage, Alaska.             June 2014.

Many times he just sat and watched the beautiful scenery float by. He seldom said much about what we were doing. But there were smiles and times of excitement that we don’t get to see anymore while at home. There were also the times he got lost on the cruise ship. Even I had trouble at times, and I am good at navigating. But he got stuck on a floor and couldn’t figure out how to get back to our floor even after calling a few times. Eventually my Dad went to get him, after we  had been searching all over the ship for him. It was frustrating and sad. We all felt bad. Jim didn’t seem one bit bothered. It is our new normal. It was a lesson. We learned that he couldn’t be left alone at all and needed to be with someone, even it was one of the kids, at all times. Sad. Annoying. Emotional.

One night, I was sitting in our cabin while the kids were out meandering around with their new friends. Jim was slowing searching around the cabin. Eventually, he sat on the bed and started to cry. I didn’t understand immediately why. So I asked him why he was crying. “Because everything I do from here on out is going to be the last time I do it. Everything is the last time.” He was having a moment of clarity. He knew why we were on this trip. He knew he wouldn’t be coming back. Even if the kids and I eventually did.

Later, on the last day of our journey, Jim seemed content. He was happy. He was awake and alert and enjoying himself. We all were. He hugged me and thanked me for taking him to Alaska. He thanked me for being a good wife and taking care of him. And he cried again. But these were different tears. Sad but different.

Jim and Brad enjoying a beautiful sunset on the ship. July 2014.

Jim and Brad enjoying a beautiful sunset on the ship.          July 2014.

And I waited. I waited until we had gotten home. I waited until we had survived the red eye flight and had started laundry and had unpacked our bags. I waited until I had the rare moment alone. And I cried. I cried because I was spent. I was emotionally and physically spent. Even after taking a wonderful vacation, I was tired from the psychological strain of making it all perfect and figuring out schedules and payments and keeping track of people,  places and things. I was done. Then, that night, I had to work. I had to do laundry. I had to worry about dinner. I had to make sure Jim and the kids were ok. Life was back to normal.

I failed again. I failed Jim. The week prior to our departure, I went over everything that needed to be packed with him and the kids. Multiple times. As a mom, I seem to repeat myself over and over again. It is annoying to everyone involved. I checked Brads’ bag. My Mom checked Frances’ bag. No one checked Jims’ bag. I (mistakenly) assumed that telling him over and over to pack sweatshirts and jackets and cool weather stuff would suffice. I was mistaken. He had shorts and t-shirts and polos. It was chilly. Thankfully, , my Mom bought him an Alaska jacket on the first day and he had that to wear each day. But, the real problem was I knew that I should check his bag. I knew it is no longer enough to remind him over and over what to do. I must go behind him and double check. The Fourth of July t-shirt I purchased him? No where to be found. Even though I had reminded him numerous times to pack it. It is such a deceptive disease. You think you can get away with letting things go but you really can’t. They sneak up on you and bite you.

So, we had a wonderful time but there were supreme heartbreaking moments. Moments that are part of our journey but normally not part of vacations.

Thank you so very much for all of the well wishes and support after my last post. I appreciate your words of encouragement and they helped me. It was a memorable journey.

Standing in front of the Mendenhall Glacier, near Juneau, Alaska. July 2014.

Standing in front of the Mendenhall Glacier, near Juneau, Alaska. July 2014.

A couple of days after our return, I was laying in bed and Jim came and sat on the edge of the bed by my feet. He started rubbing my feet and I had my eyes closed. If I let myself, it could have been years ago and all this talk about Alzheimer’s Disease could easily be a nightmare that others live. But as I tried to meld into a different time and place, I was snapped back into our reality. I heard a sniffle and then a sob. As Jim sat rubbing my soles, his soul was opening. I asked him what was wrong. “I am just so tired of not being able to remember anything.”

“Well, you remember our trip we just went on, right?”

“Yes.”

“Where did we go?”

Silence. My breathing became a bit shallow and I began to curse myself for asking. Did I really need to put him through this torture and myself as well? But I knew he knew this answer.

“I can’t remember the places.”

“But you remember the state. What state did we got to?”

“Alaska.”
“Well, that is all you need to remember.”

“I wish I had all the places I went with the IG team still. I think that one pier we were at, looking out at the water and the birds was really familiar.”

“Jim, you never went to Alaska. That was one of the main reasons we went. You went to Seattle.”

“Hmmm. It sure did look familiar, like I had been there before.”

“Well, we have lots of pictures and we will help you remember.”

“Thanks. I love you. You are a great wife and I am so lucky. Thank you for being such a good wife to me.”

Jim looking out from our balcony. July 2014.

Jim looking out from our balcony. July 2014.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (19)

Younger Onset Alzheimer's, frustrations

Visiting Mount Charleston, NV 1996.

1:43 p.m.  What time do I need to pick Brad up from school today?

1:45 p.m.  Does Brad have Odyssey of the Mind today after school?

1:50 p.m.  I am sorry to bother you. What time do I need to get Brad up from school?

In the past few months, this has become the norm, not the exception. The norm. It is now the exception if Jim remembers something. It almost calls for a celebration.

Since he has started to decline more and more as far as short term memory, more friends and acquaintances have noticed a change. Just tonight someone asked me if his leg was ok because he seemed to be walking different. Yes he is. He is now doing an “old man shuffle” as I call it, most of the time. PJ’s are usually on by the time I get home from work. He says they are comfortable and I have no argument. Yep, pajamas are nice at 5:30 p.m. Wish I could put them on and relax for a night.

I hate Alzheimer’s Disease. I hate the fact I have no control over our destiny. I hate the fact that no matter what I do or how I do it, nothing is going to change. I hate the fact that I lose my temper. I hate the fact that I am so busy that I am seldom around for the kids when they really need me. I am working. I am working. I am working. I always seem to be working. Again, I am so grateful for having a job, but sometimes the 8- 5 grind doesn’t gel with the Alzheimer’s Disease/Kid meltdown/Life agenda. Plus I have a job that requires some nights and some early mornings. When my kids are both crying for me to stay home and telling me they don’t want to be left home with Dad, I am torn. I am torn because I want to stay. I need to work. I want to be there for them.  Yet we have bills and need my paycheck. It isn’t fair to Jim that they feel this way because I know how awesome of a Dad he is. He was. But I can’t. I can’t stay and I have to leave. I am a torn, broken woman. I think my dilemma is similar to that of a stay at home parent. Except my spouse is living with us. And instead of learning from mistakes like children usually do, my spouse is repeating the same annoying stuff. And we are supposed to understand and be patient and carry on like nothing is wrong.

I sometimes see other people who seem to have everything so easy. I know deep down this isn’t really the case, but when life is handing you lemons, it is hard to see how to make lemonade. It is getting harder and harder to keep the REAL Karen alive. The exasperated Karen seems to be pushing her way to the surface and I am trying so hard to not let her out. Now the smallest things become HUGE difficulties to deal with. The cable company screwing up. A birthday party coordination. Just trying to keep up with paying bills and going through the mail becomes tasks that should be congratulated  when done. Yep. I congratulate myself often now for things that were so simple, routine and easy just a year ago. Then if you throw in anything extra, like an oil change, coordinating a play date, a scam artist calling the house, changing any part of the daily schedule; it all becomes a huge undertaking.  Something so simple and easy becomes completely overwhelming, daunting and a burden that is almost insurmountable. It is insane how this happens, but it does.

Frances told me tonight,” Sometimes you seem to get upset with every little thing that isn’t done right or needs to be done. And sometimes you just don’t seem to care. We need to find a happy medium.”  Yes. She is correct. Yes. She is going to be 13 on Saturday. And YES, I am very proud of her. She gets it but that doesn’t mean it is any easier for her. I am trying to find that happy medium. But as I am constantly being pulled in so many different directions while watching Jim observe from the sidelines, I am struggling to get to that place. I know I can. I want to. I am trying. But, it sometimes appears impossible. But nothing is impossible if you are willing to try and want it bad enough.

It makes me so sad. There is no longer any input from Jim. He struggles each day just to follow his list and to follow a conversation. Sometimes he seems to be fine, but those moments are getting rarer and rarer. And that makes me sad. Even though I am aware of what is coming, when these stages hit, knowing what still lies ahead only makes me guilty for not appreciating what he still can do now.

I am a proud woman. I am a proud woman that has to accept help. I am a proud woman that has to accept sympathy and knowing looks and suggestive comments and do it with a smile while being gracious and grateful. Yes. I am grateful. For so much.  So very much. But just because I am grateful doesn’t mean I  cannot be resentful. I am resentful that I am not able to live up to my potential at my job. I am resentful that I am not able to be a better mother. I am resentful I can’t keep my house clean or clutter free. I am resentful that I no longer have a husband in the sense of the word but I am still married. I am resentful that my children live with their father but he cannot be the Dad that he is capable of being. I am resentful that we worked so hard on our marriage for so long and now our relationship is a joke. There is no communication. There is no intimacy. There is no support. There is no acknowledgement of anything sacrificed or done on behalf of anyone. I am just done. Done with it all. But I can’t be. I will get up, fix a meal, clean, work, check homework, drive to practice, work, and sleep. Sleep is my friend. And my enemy. When I sleep too much, I don’t get enough done.

It is a bitter time in my life. I never knew how strong I could be or how strong I would have to be. I am realizing it now.

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

Inquiries answered.

Dealing with Alzheimer's and holidays.

Jim and I New Year’s Eve, 2013.

Happy 2014! I want to start off the new year by answering a few questions that have been asked (some repeatedly) since I started this blog last Feb.

I am working on a new post as well and have decided that I will share even more and if possible, provide more insight into the nitty gritty of living with Younger Onset Alzheimer’s Disease. It is hard sometimes to open up about something so personal, but the overwhelming response of love, support and camaraderie is healing and soothing to my soul.

For now, here are some questions and answers for you.

As always, thank you so much for all of your love, support, encouragement and feedback. I have found this journey to be a bit more survivable because of all of your kindness.

How did you first know something was wrong with Jim? What was it like before he was diagnosed?

About 6 or 7 years ago, we started having a lot of problems in our marriage. We went to a marriage counselor and it was very frustrating. I would go in bitching and complaining about Jim, he would agree with everything I said while promising to do better and the next session would repeat itself all over again. I felt very guilty for constantly being upset with him and needing to correct him. I was told I was too hard on him and expected too much. (not by Jim) I couldn’t understand why he was at times saying things that just didn’t make sense; otherwise seeming completely normal and like there was nothing amiss. There are a couple of examples I have used, the easiest one relates a time we were driving down a road under construction and one of the kids asked how they determine the speed limit. Jim shot back quickly “by the number of potholes.” An argument ensued and it was just one of many like this that would happen sporadically over a couple of years. At that time, Jim was not forgetting anything. He wasn’t really losing anything. He was still pretty much himself, but at times not. I was really contemplating leaving him because I was just so unhappy and so was he. We couldn’t afford to separate and soon enough his “episodes” became more noticeable and more common. I knew something was wrong with him after he got confused about a bridge in Georgia. I honestly believe the reason Jim was able to be diagnosed as early as he was has a lot to do with the fact that I am a type A personality, that I knew him very well and that I am so in tune with how he normally would be. It wasn’t in my personality to just let things slide. I also believe that at times it is good that we learned so early, but I also think it will make our living Hell seem that much longer.

I wrote my first post about this very topic. Click here to read that essay.

Where is Jim in the progression of the disease?

This is a tricky one to answer for me. I will tell you that he originally was diagnosed with Mild Cognitive Impairment with the likelihood of developing Younger Onset AD because of the history in his family. After our follow up visits to the NIH this past summer, we received confirmation that Jim is now diagnosed in the Early Stages of Alzheimer’s Disease. His short term memory is very bad. He is forgetting names, conversations, what he just did (or didn’t do) and little nuances like whether or not he should take a shower or shave. He is not able to multi task at all. He is still driving, but only in places he is familiar with (we have had him tested for this and have gotten two different ok’s). He no longer seems to be able to relate to things going on; seeming aloof or indifferent. He never asks about finances or kids schooling or my work. He is able to help with dishes, the laundry, math homework and other easy chores around the house. He gets confused pretty easily and I have noticed his beautiful handwriting is no more. It is slowly turning into shaky, hard to read verbage. He keeps lots and lots of notes to himself to remember what to do and I think at times what not to do. He is losing many things (sets of keys, passport, license) He has kept his sense of humor, his smile and a fantastic attitude. He plays tennis, jogs and walks our new family member, Duke. He tries hard to maintain his core self and to remain a steadfast partner to me and father to Frances and Brad. I think he does an exceptional job. So much stronger and better than I would ever hope to be in the same situation. Many times someone will meet him for the first time and carry on a brief conversation with him and have no idea that he is suffering from such a cruel disease.

How are the kids handling all of this?

This is extremely personal and I feel like it would be their place to share, not mine. Although they are both aware of my blog, Frances reads it on occasion, but it seems to me that this is something for them to answer. I will say I have taken them both to a counselor. I try to remain open about what is happening to our family. I try to include them as much as they want in events and discussing how Jim is doing. I will tell you that it is very, very difficult to watch them get frustrated with their father and then see the regret and the guilt that soon follows (just like I often go through). They are both extremely bright, loving and active kids. Jim and I really just couldn’t be any prouder.

Does Jim read the blog or even know about the blog?

Yes, Jim knows about the blog. We had very long, heart to heart discussions before I even started. He started reading it once or twice and it was very difficult for him. I don’t believe he has read it since then.  He has been 100% supportive 100% of the time. Not once has he asked me to stop or to not share something. He trusts me  and wants our situation to help others. It is very important to him to have a change come about not for him, but for our children.

Will I write a book?

I honestly had never considered this until I had many people ask me. I am pondering and contemplating and deciding. I will keep you posted. I really am not a writer by trade in the least bit.

How do I manage financially?

Well, I work full time. Jim receives a retirement from the Air Force and he receives Social Security Disability. Plus, we have been EXTREMELY blessed with help with dinners, gift cards, monetary donations and help in many ways. Without the help we have received, I am not sure we would have made it this far without losing our home or car or going hungry. Ok, I don’t think my parents or closest friends will let us go hungry. But, you get the idea. It is very tough and I know it is only going to get tougher when we need someone to stay with Jim during the day or full time.   It seems when I am desolate and down to our last few dollars, miracles happen. I able unable to explain it any different.

What is my plan? How do I plan on making a difference?

I will continue to advocate with our policy makers and I will continue to share our story. I have a dream though. I would like to start our own Foundation. I would like to work full time on helping other caregivers. I have a plan, but I just don’t have the time or resources yet. I am working on it. It just isn’t happening as fast as I would like, but I am an impatient person. Right now I struggle with my work demands and hours needed elsewhere. I am acutely aware of how this is changing and how much it is causing me stress, lack of sleep and unhappiness. In reality I need to work. For not only financial reasons, but for my sanity and to make me have a life outside of my own, tiny, self-centered world.

How do I manage?

I am not sure I feel like I do. I often wonder how I am going to survive this journey. I wonder if I will survive the next round of declines and financial decisions and children issues and I am not sure I can. But, I live another day. I focus on today. I focus on what I can do today that I couldn’t do yesterday and I can’t do tomorrow. I can tell you that my parents and my friends have buoyed me above my fray and kept me from falling into an abyss of darkness I wouldn’t be able to return from.  I just do the best I can while I can. I constantly have faith that something better is just around the bend. There are times that I waiver from this belief and it is at these times that I am at my lowest. I struggle to pull myself out of any desolute and despair I feel and try to re-focus on what I can do now. What is in my control? What isn’t in my control? Being a Mom. Being a friend. Being a wife to a man that would be so terrified to know the anguish and stress he has caused his family and will cause his family.

Do I make money off my blog?

No.

Do we attend a support group?

Yes. I have connected and bonded with several other women who struggle with the same frustrations I do. Jim meets at the same time with others afflicted just as he is and they all seem to be about at the same stage of the game. We meet once a month and I am the youngest and the only one with children at home. It is coordinated through the Alzheimer’s Association and utilizes volunteers. I look forward to our gatherings and I feel a kindred spirit between us.

Has Jim tried coconut oil, fish oil or any other remedies?

Yes, yes and yes. If it has been published and has been regarded as a possible help with his symptoms, we have tried it.  But I do thank you for the continued sharing of such articles and information. We even tried the hyperbaric chamber.

I hope I have answered your questions and I thank you again for reading my blog, sharing your stories and sending me so many positive thoughts and well wishes (and advice).

May 2014 bring us all closer to the one thing that will bring us true happiness. A cure for Alzheimer’s Disease. 

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

Happy 365 Chances to Make Someone Else Happy

Happy-New-Years-sayings-quotes-1-570x759

Happy New Year. We say these words to each other in merriment. We say them to strangers as a greeting. It is something we wish for one another but how often do we help others actually have a happy new year? All year long?  Do we celebrate together and then toss the sentiments aside once the celebration has worn off? Do we discard our desire for others to be happy along with our annual resolutions? Why is it so difficult to stick to lists of things we want to better about ourselves? It is also sometimes just as difficult to remain a steadfast partner, friend and caregiver.

When the clock was striking 2000, everyone was worried about Y2K…remember? Jim and I brought that significant time passage in together on the island of Martinique. It was a blast. We had a spitball fight with the other dinner guests at our resort (a tradition in France, so we were told) and met and danced and rang in a new century with people from all over the world. We had to fly out the next day and there was lots of chatter about whether or not the planes would be able to take off. They did. We were disappointed. We were more than willing to stay another day in paradise. Later that year I would become pregnant with Frances and our family would grow and become enhanced in ways I could have never imagined. I also couldn’t have imagined at the time that in just a few years I would be mourning Jim every day; while he is still fully alive and completely healthy other than his early stages of Younger Onset Alzheimer’s Disease. I suppose it is a blessing to not have a crystal ball. I look back and can see our youth, our love, our happiness. I cannot fathom feeling, looking or living that way again. All I can see now is Jim’s progression and the decisions and work I have laid out before me. How I long to have the ability to be carefree and full of options and life as we were just years ago.

It will be a new year. But will it be a happy one? We are ultimately all in charge of our own happiness, regardless of what life hands us. Keeping this in mind, I believe the only way I will be able to remain happy is to focus on the kids. Focus on helping others. Focus on making it a “happy all year long” for the many caregivers that are going through this journey. I will remain steadfast in my determination to speak out and educate. I have been blessed this past year with new friends that have stepped up to the plate, old friends that have been a beacon of support and love, much needed assistance from perfect strangers and the love and affection of two children, two parents, a brother and a husband that remind me everyday what matters most. I want to pay it forward. With a little money and a lot of time, I plan on doing this. Just finding that money and that time….

It is hard, very hard, to remain strong day in and day out. It is hard to rely on others for help. It is easy to concentrate on helping others at the same time we ourselves are needing help.

It will be interesting to read these words again in 365 days to see how I feel, where we are and what changes have occurred in our world.

I ask that each of you focus on making 2014 a year to find wonders that surround you, find love from within and to help others make this a happy year, all year long. The benefits you will receive will far outweigh those that you give. And it will make our world a better place.

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

Christmas Cards in the Mail yet?

Saint Nicholas, Alzheimer's Disease, holiday tradition

Frances and Brad with Saint Nicholas at Endview Plantation. We took them for years. Dec. 2008.

Tis the season for cheer. And lots of friends gathering round. This is the time to sing songs you have been singing all of your life. Now is the occasion to send out cards to everyone you now know and everyone you once knew. Yep, it is time for the Christmas card drudgery.

Ever since I moved out into this great big world on my own, I have sent out cards every year in December. Except for last year. And the year before. And the two years before that. Each year I would promise myself I was going to find the time and the energy and the wherewithal to write the accompanying letter and get a nice family photo copied 100 times and we would sit down and make our cards. Yes, you read that right. Make our cards. I am NOT a crafty person. I have talents but crafts is not one of them. But, when the kids were little we started a family tradition of sitting down together and making our cards. In my mind, that was going to help us bond and we would create a magical card each year, topping the previous years’ masterpiece and eventually we would have a collection to put on display each year.

Well, about the time we really began settling into this tradition, Jim started having some symptoms that something was wrong. Which is a delicate way of stating that we were having trouble with our marriage and I wasn’t feeling jolly, delightful or ready to spread cheer to all of our friends on the mailing list.

Dec. 2009

Dec. 2009

So the first year we missed our cards, I told myself we would make New Year’s cards. We had the paper, the stickers, the markers, and the whole shebang of supplies. And then the second and third year, I fooled myself again into believing we could still do this. We didn’t. I didn’t. There was no way I could wrap my head around doing it. I briefly thought of doing the simple photo card and being done with it, but that would break our tradition, admitting I was a failure as a Mom and as a future Martha Stewart, and I am a little hard headed. So, no cards were done for 4 years.

Now it is that time again. I haven’t made a card, but my very artsy daughter, Frances, has. She has made 3 cards and is determined to make it to 10. I ordered the photos. We have 3 cards addressed, stamped and ready to be mailed. I might even use some of her supplies and make a few when I find a spare moment or two. The letter? Not going to happen. What would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s Disease and have no idea what our life will be like next year at this time. Merry Christmas.

Alzheimer's Disease, tradition, Saint Nicholas

Dec 2010

I must remind myself many times a day of how we never know what life holds for us. I must remind myself how down I get each year now at this time and how each year we end up having a magical, memory making holiday.

This year, I am struggling, but I do feel stronger and better than I did last year. I fight off my negative thoughts and my bitterness and my anger each moment I am awake. Sometimes I do a great job and other times I should be fired.

I miss Jim so much during Christmas time. I miss our discussions of what to get the kids and our families. One year we hired a babysitter, took all the toy catalogs we had gotten in the mail and sat at a restaurant pouring through them together coming up with ideas. I miss sitting next to our lit tree after the kids are in bed, just looking at the lights and sharing quiet time together. I miss feeling excited, wondering what neat idea he had thought of for me under the tree. I miss his help decorating, doing the cards, singing songs, watching movies and so much more. He still watches the movies and he still throws out a hum (actually lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

We will carry on our traditions for as long as we can. We may start new ones. We may lose a few along the way. I am grateful we have each other. I love my family. I am so very, very grateful we are together as a family. I am grateful we have so much, when so many are in need. I am grateful it has been such a great year. I am grateful for all I have; yet I still feel so sad and so alone.

I miss Jim.

Saint Nicholas, Endview Plantation, Traditions, Alzheimer's Disease

Our final visit. Sad that this tradition has ended. Dec. 2011.

 

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

What have I missed?

 

Brad, Frances and Jim at the tree farm we go to each year to tag our tree. We return in Dec. to cut the tree and bring it home.

Brad, Frances and Jim at the tree farm we go to each year to tag our tree. We return in Dec. to cut the tree and bring it home.

“Did I miss going to tag our Christmas tree?”

“No, we haven’t gone yet.”

“Oh, good. But we need to go soon, all the good ones will be taken.”

This is an exchange between Jim and myself earlier today.

At first I thought Jim believed the kids and I went to tag the tree without him. Then I realized he wasn’t sure if he just didn’t remember going. And then I was sad. Very, very sad.

I sometimes probe Jim to see if he realizes when he asks the same questions or if he realizes he is forgetting things. I get mixed answers and I never really am sure what the real answer is.

Today, when he called, I got the answer I was searching for. Not the answer I was hoping for, but an answer to understand a little more of what is really going on inside of his mind.

Frances and I tagging the tree, Nov. 2011.

Frances and I tagging the tree, Nov. 2011.

Nov. 2008. Jim and Brad.

Nov. 2008. Jim and Brad and Frances in search of our tree.

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