Doctor Day Sucks!

Jim and I. Dec 2014.

Jim and I. Dec 2014.

Today was DOCTOR DAY. I think in general we usually look forward to going to the doctor, even subconsciously, to get healed. Healed from whatever is ailing us. Healed from something we may not even know is wrong. Healed from things that hurt a little and things that hurt a lot. Eventually, with the help of the almighty physician, we are healed. Unless we have something that they just can’t heal. ALS. Huntington’s Disease. Lots of types of cancers. Alzheimer’s Disease.

Today, I saw the pain of not being able to help us on Jim’s doctors’ face. And in his words.

To start with, they called Jim back without me to do the mental exam. I knew it would be lower than the last visit nine months ago, but I didn’t realize quite how low. When they called me back, I could tell the nurse, who we always see, was a tad “different”. I knew that she had seen the difference in Jim. I knew it was bothering her.

When the doctor came in, he was his usual pleasant self, but when we got down to business, he fumbled over his words. He was struggling, because as a physician you are trained to heal. You are trained to find out what is wrong and to fix it. He can’t fix what is wrong with Jim. Jim went down 6 points on the memory exam. I looked at the drawing of the clock which is always part of the exam and I saw there were no hands and the numbers were wrong. My heart sank. Even though I know he is declining, seeing it in black and white is hard. Hard. For ALL of us.

When I entered the room and it was just Jim and I, he started to cry. He knew. He knew he hadn’t done well on the test. He isn’t far enough gone to be completely oblivious. This is so painful to watch. This wonderful man, crying and realizing what is happening to him and not being able to do one single thing to make it better. He told me he wanted to move away. I asked him why. “So the kids don’t have to see me like this. I don’t want them to see me the way I am going to be.” It took every ounce of self control not to burst into tears with him. I saved that for later.

I recently went for a walk with a friend. During our hike, we discussed Jim and lots of different sides of being his caregiver. Part of the conversation went like this:

Me: I don’t really feel sorry for myself. I think sometimes I come pretty close, but for the most part, I don’t think I am.

My friend: Really? I thought from reading your blog that you were pretty sad most of the time.

(At this point I was a little surprised since I didn’t know she was keeping up with this blog)

Me: Not really. Yeah, I get sad, but I can’t stay that way all the time. It would be awful for Jim and for the kids.

My friend: You don’t feel like you feel sorry for yourself?

Me: No. I feel sorry for Jim. I look at him and I just really feel sorry for him. And I think about the kids not having him for a dad. He was such a great dad and they won’t remember all the awesome things he did with them and for them. I am a much worse parent and it’s actually sorta sad that he is the one leaving them and not me. He would be more patient and teach them so much more. I get really sad thinking that they won’t have him around and they will watch him decline more and more and it is taking over their whole childhood.

My friend: You are a great parent. You shouldn’t say that.

And then we walked. Because, what else was there to say?

Back to the doctor visit…. The doctor recommended we try Namenda and the Exelon patch again. As I have written in past blog posts, we have tried EVERYTHING and I am not going to rehash why Jim is off all meds at this time. But, I believe we are going to give them another try. He told us that sometimes when a patient is further along and showing increased symptoms the medications can show help in lessoning some of the symptoms. But of course, they aren’t a cure. As the doctor spoke and Jim listened, he started to cry again. He understood he was hearing that he is declining. The doctor told us we wouldn’t do the memory tests anymore because there wasn’t a purpose any longer and it was causing stress. He also told us we didn’t need to schedule an appointment for a set amount of time. We would start the medications and call in as needed. There is no point in seeing him as Jim declines because there is nothing else he can do. This is not to say we can’t come see him and won’t, but there is no set six month or nine month time frame anymore. Just whenever we feel we need to see him.

Whew. I am crying as I write these words. My heart aches for not only Jim, but all of us who travel this journey with no help. No way to fight. No hope.

I am not a scientific person, but many times I wish for a scientific answer. How long does Jim have? What trajectory is he on with the decline he has shown? It may seem a little morbid to some, yet others will completely understand. I think it is human nature to want to know how long you will have to endure a form of torture and pain. When will this be over? When will Jim not be in pain? Actually, that is more of a clichéd expression. Jim isn’t in pain. Only when he realizes he is leaving his children. Most of the time, he is happy go lucky and in great spirits. He has a great attitude and is very pleasant to be around. He isn’t angry or sad or even moping around. He has the best attitude he could have and I am so proud of him. So when I say something about wanting a time frame, it isn’t because I want him to be gone, it is because I am trying to plan, trying to figure things out, trying to adjust and have a concept of what lies ahead. I believe people do this in all aspects of life; whether it is planning for high school, college, their first job, marriage, having a child, moving to another country, moving out of their parents home, changing jobs, etc. We are always looking ahead and asking for time lines.

It was mentioned that Jim was declining faster than some, but not as fast as others. I guess you would say he is somewhere in the middle. Not a fast decline but not a slow one either. I didn’t ask the doctor about a time frame. He wouldn’t be able to tell me. Alzheimer’s Disease works so differently for each patient. And Jim is very healthy otherwise. I know this is a long haul. I can handle it. We all can handle it. But I hate that he is having to and I hate that the kids are having to. I hate that my friends have to take care of us and I hate that my parents must use up so much of their retirement years rushing to help us. I despise being the damsel in distress. I know Jim despises it too. He was our knight in shining armor and unfortunately, he knows he isn’t any more.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (22)

Please fix that chick you see in the mirror….

This is such an amazingly good photo of Jim now. I love it. Dec. 2014.

This is such an amazingly good photo of Jim now. I love it. Dec. 2014.

I am searching. For me. For a way to survive. For a way to thrive. For a way to find myself in the midst of sorrow and angst. I am lost in my own mind of worry and contempt. Contempt for myself. I realized over the holiday break I don’t really like myself but I haven’t quite put my finger on why. You must understand I am a realist and I am just as hard on myself as I am on anyone else. Is it because I can’t save Jim? Is it because I have thoughts of wanting it to all be over, which in reality would mean him dying sooner rather than later? Even recognizing how difficult it will be to be a single parent, I sometimes catch myself wanting this to end abruptly so the children (and myself and everyone else really) won’t have to watch Jim lose himself and all he is/was.  Is it because I lose my patience with my children when I am tired or stressed or disgusted by the fact I still need to clean off my desk, clean the bathrooms, do another load of laundry and clean my room and fix dinner? Do I find contempt for the person in the mirror because she isn’t a superwoman after all?

It’s true. I don’t like myself. I don’t like my looks and most of the time I don’t like me. I don’t like the person who needs help all the time. I am blessed by the fact we have many friends who have jumped at the chance to help us. I recognize what a wonderful support system we have and also recognize I wouldn’t survive without them. But I would be much happier being the one to help than the one constantly sucking up whatever is offered our way.

I am emotionally a mess. At any given time I could cry or fill your ears with a myriad of complaints and turn it into a tirade and then end it by feeling guilty and regretting the whole mess. I am constantly trying to get a handle on my mental status, my physical well being and organize my life, my house, my thoughts and my world. But, it is completely impossible to organize anything with a spouse with Alzheimer’s Disease. Things are misplaced. Things are broken. Things are left incomplete. I feel like a mess. I want order and all I can muster is major chaos.

Sometimes, I sit and I look at Jim. Really look at him. I no longer see the man who swept me off my feet….I see the hunched shoulders and the thin body and the timid responses. I see a shell of the man that at one time I thought could do anything and would help me conquer the world. I feel so sorry for him. I don’t want to feel sorry for my husband because I know he wouldn’t want it, but I do. I can’t help it. The contrast from a few years ago to now and I know the contrast that will take place over the next year or so….it breaks my heart. For Jim. For our children. For our friends. Jim deserves so much better. Not just because no one deserves to suffer at the hands of Alzheimer’s Disease, but because he has always been such a stand up, kind, giving and all around good guy.

There are more stories lining up than I can share….but I will share the one that stands out the most to show how I am failing my family…..

I recently had to drive just over an hour away to take Frances for a new adventure in her life. I had a choice; I could drop her off and immediately return home, or I could linger and have dinner with a friend. I chose the latter.

So, Brad was left home with Jim. Keep in mind, I promised myself a long time ago that I would never have the kids “babysit” Jim. So, I get Frances settled and I go to a leisurely, wonderful dinner with my friend. While we are eating, I have my phone on vibrate so I don’t hear or see the two messages from Brad. When I get to my vehicle I call home.

“Mom, where are you?”

“I’m leaving now. How was your day? “

“Good. You didn’t tell me you would be gone for lunch AND dinner. I didn’t know I would have to fix me and Dad dinner too. I thought it would just be lunch. “ Ouch. 

“I’m sorry honey. I just got done with dinner and will be home in about an hour. Did you get enough to eat?”

“Yes. But why aren’t you home yet?”

“I stayed to have dinner with a friend. I told you I was.”

“Ok. I will see you soon. I love you Mom.”

“I love you too.”

Less than five minutes later, I get a frantic call.

“Mom!! Dad is crying. He has his finger stuck in the dog collar.”

“What? Can you undo the clasp? How did it get stuck?”

“I don’t know. It’s not the clasp. We can’t undo it. Mom, he is in pain.”

“Brad, go next door and get Rex (not his real name).”

“Mom, I can’t. I can’t leave him.”

“Yes, you can, go now and get him and he will be able to help.”

“Ok.”

Ten minutes later, I call and find out the neighbor has indeed come over and helped. Once I am home, everything seems fine. Neither Jim nor Brad can demonstrate to me how he had his finger stuck. Jim doesn’t even seem to remember it happened at all.

The worst part comes as I am tucking Brad into bed:

“Mom, I think you need to get someone to stay with Dad. You know. All the time.”

“I know. I have been thinking about it.”

“Well, someone besides me needs to be here in case an emergency happens. Dad can’t do anything and there needs to be someone here to help him when he can’t.”

Yep. Mom of the year right here. My ten year old has more sense than I do. Hiring a caregiver at home seems so easy. But it isn’t. It isn’t just about money (although that is huge). It is finding someone. It is making that call or several calls. It is having someone in your home, in your life, ALL THE TIME;  to see your many facets and to see the clutter and the mess and the ugly side of things. It is an intimate look into your family and your life and it is a huge step to take. I know I am about to take the plunge and I am not happy about it.

Next story:  Clingy and trapped.

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

No! You can’t.

Redskins game, Dec. 2012.

Redskins game, Dec. 2012.

If Alzheimer’s was contagious, there would be millions of people running around scared and demanding that a cure be found. There would be such a great demand for more answers and better care that change would happen. Quickly.

But it isn’t contagious, so we must fight for every single penny that is given towards finding a remedy.

I sometimes wonder if each of the people who would be diagnosed at some point in their life knew they would be the one out of every 3 seniors who would die from dementia would they quickly take up the cause?  What if their beloved children were more susceptible and more likely to inherit this death sentence? Would they stroke a check? Would they march in the streets? Would they scream and yell and curse and fight like their life depended on it?

October 2006. Brad was 2.

October 2006. Brad was 2.

What if you were told EACH of your children has a 50/50 chance of developing the first signs while you will be alive to witness their decline? And when you search the doctor for answers, begging with your tone, body language and questions for a way to keep the inevitable from happening, you are simply told there is nothing you can do. You can keep them from football, boxing and soccer. That is it.

So, you do the one thing the doctor has told you. You break your athletic sons’ heart and forbid him from participating in soccer, even though he really wants to. You forbid him the pleasure of holding a pigskin in his clutches and running for dear life towards the goal line . Even though he has told you time and time again how much he loves playing football and soccer, you hold steadfast, with your belief that this is the one only thing you can do at this stage of the game to possibly make a difference.

Brad having some fun in Dec. 2009.

Brad having some fun in Dec. 2009.

 

Two years ago we were able to attend a Washington Redskins game. They were playing the Baltimore Ravens so it was a big game. I had gotten tickets because Brad loves watching football. He was so excited to attend a NFL game. The fans. The chants. The chill in the air. It was a great family memory making event for us. During the game, Brad struck up a lively conversation with some gentlemen sitting behind him. One of them coached youth football in Maryland. He was impressed with the excitement and knowledge of the game Brad displayed. He asked him if he played.

“No.”

“Why not? I bet you would be good.”

“My Mom won’t let me.”

“Momma, you need to let this boy play some ball. Let him come up here and play for me. I will teach him how to play.”

Yes, this perfect stranger, meaning no harm, still stings my heart and soul with his innocent remarks. Even recently,  a father of a teammate on Brads’ baseball team, whose son also plays football, he told me I should let Brad play. He educated me on how well made the helmets are now and how safe it is. It took all of my self control to remain calm and collected when I really just wanted to ask him how he would feel if the only thing he had been told by the doctor to help stave off a disease that is killing his father would be to prevent him from participating in the very thing he was demanding I let my son do? How dare them. How dare they, albeit with no ill intent, call me out as a bad Mom for not letting Brad play a sport? How dare they tell me what I should do for my son? How do you fight a society that doesn’t listen? Doesn’t look too far down the road? If this disease afflicted children or even teens, would we not have our funds for research?

Brad playing soccer before Jim was diagnosed and I was told not to let him play. Sept. 2010.

Brad playing soccer before Jim was diagnosed and I was told not to let him play. Sept. 2010.

Let me be clear here; I LOVE football. I used to love playing it in the backyard with my brother and his friends and I loved watching it. Jim and I would sit each Sunday and watch game after game. (Before kids) But as his disease has progressed and news reports have surfaced linking the sport to dementia, I have lost the thrill. I now cannot see the excitement in a great tackle but I can only envision the damage being done. I can picture the brain rattling in the helmet and wonder if it is worth it. Then I will turn to look at Jim and see the dimness in his eyes and lack of expression on his face and I know it isn’t. It isn’t worth the pain and suffering for either the player or the people who love them.

I know what it feels like to love a game . When I think back to my days playing basketball, I can still feel the thrill of running up and down the court with my teammates. I can recall how exciting it was to hear the fans, make a play and to be part of the game. It is exhilarating. It is challenging. Being a member of the team is a feeling of security and family that you don’t get anywhere else. Whether it be basketball, football, baseball, or soccer, being part of the squad is a great privilege and teaches life lessons on teamwork and hard work. Who am I to deny my precious son this opportunity? Yes, he gets to play baseball and basketball. We all know, though, that the thing you want the most is the thing you can’t have. So, while he is a great joy to watch on the diamond and the court, he longs to run the gridiron and the field.

I will stay strong in my steadfast denial of his joy, but it will continue to break my spirit one comment at a time.

Brad at the Duke/Carolina football game, Nov. 2013

Brad at the Duke/Carolina football game, Nov. 2013

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (4)

Apples anyone?

Frances picking apples in Charlottesville, VA Oct. 2008

Frances picking apples in Charlottesville, VA Oct. 2008

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

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

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

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

Brad picking apples, Oct 2008

Brad picking apples, Oct 2008

 

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

Rough days ahead

 

younger onset alzheimer's disease

JIm, circa 1996. I miss that smile and full of life look. Notice the box of Raisin Bran, even back then. (for a future post)

I am not sure where to start this. Today was an extremely rough day. Rough for me. Rough for Jim. Rough for Frances. Rough for my friends. Just rough all the way around.

I had to be in the office first thing, so I was out the door around 7. No emergency phone calls from Jim or the kids, so I thought everything was fine. During my second meeting of the morning, around 10:30, I get a phone call from Jim.

I could tell immediately from his voice that something was wrong.

“Bad news. I am locked out of the house. “

“How? You have to have a key to lock the front door. What happened?”

“I don’t know. I took Duke for a walk and now I can’t find the keys.”

“Look around the front porch. Have you re-traced your walk?”

“Yes.”

So, I am sitting in a meeting, trying to remain professional, and trying to figure out how I can get him back in the house. I am 45 minutes away. I start texting friends that have keys and find one that can quickly go to the house to let him and Duke in.

I am not too terribly concerned because at this point I have faith that we will re-trace his steps and somehow find them. Or someone in the neighborhood will find them and return them to us.

Much later,  I stop by the house to check on him. We start our discussion of exactly what happened to the keys. This was the last pair of keys we have to his car. He has lost the other 2. This is the 7th or 8th house key he has lost. (I have lost track by now). I am still not overly concerned. I know it will be ok.

But during the course of our conversation, I lose it.

One of my Christmas gifts to Jim was a key finder. You attach one to your keychain and then you have a clicker to press when you can’t find your keys. It beeps and you listen and track down your lost keys. Simple. Right?

I asked Jim if he had tried to use this to find the keys. The first time I asked, he told me it was on a different set of keys. That confused me, but I went with it. The next time I asked, he informed me that he had heard it beeping by the trash can. So he looked, couldn’t find it and well, that was it.

Today was trash day. Today the trash was by the side of the road and the trash trucks came around and picked up our trash, our recycling and so it seems, our house and car keys.

I was so angry. How could he hear it beeping and not know he should dump out the whole trash can if need be? How come he didn’t just roll it back into our backyard before the truck came by? Why didn’t he wait for me to get home? Why did I have to be in the office today? Why couldn’t I be home to fix this for him?

The guilt. The anger. The utter dismay. All rolled into one . One long cry.

I asked Jim to leave me alone and let me take it all in. I told him to give me space. He went for a walk. Which is fine because he goes for about 5 walks a day with the dog.

I went up to our bedroom and let it out. Let out the emotions that have swirled and simmered inside for a while. The screams that came out of me were long and loud. So much so that I had someone ask me later if I had been sick because I was so hoarse. The crying. The tears. The lying on our bedroom floor, thinking in my mind that it isn’t so bad; it will be much worse; it could be worse; this can be fixed. None of it resonated with my instinctual reaction of bloodcurling screams. None of it stopped the drool from dripping onto our hardwood floor. None of it stopped my cries of pain and my eventual realization that I was going to throw up. I have never thrown up from crying. When my Grandfather died, I cried and cried and cried. When my first, second and third loves broke my heart, I cried and I cried and I cried. But I never threw up. Today, I did. Today, I lost it. I lost control. I felt helpless and lonely and alone and I didn’t have an answer. I couldn’t fix the REAL problem. I couldn’t find my Jim in all of this mess. I am rarely alone in our home. Today, I was and today I used that to release the tension, the anger,  the sadness and the defeat I felt.

I finally meandered downstairs and retrieved my phone. There was a message from a friend. She had just seen Jim walking down the road, not in our neighborhood, but on a busy road that we NEVER walk down.

So I called him.

“Where are you?”

“I am on the road by the churches.”

“Which churches?”

“The one Brad played soccer at.”
“Jim, what are you doing over there?”
“Walking.”

“Are you headed home?”
“Yes.”

A minute later I am on the phone with another  friend. She tells me she is close by and will look for him. She calls me about 5 minutes later to let me know that she found him, but he refused a ride and barely acknowledged her.

I can’t cry anymore. I am done for the day. I have no tears, no screams, no anger left. I am spent. It is time to start the evening routine with the kids. Practice, dinner, homework, bed. Bed. What I wouldn’t give to be able to just got to bed, pull the covers up and forget my life. Forget this nightmare.

It must be so terribly difficult for Jim. But he doesn’t show any emotion. He just keeps shuffling forward and doing whatever it is he was doing. He doesn’t seem to care or be concerned.

I spoke to a friend tonight while Frances was at softball. I was lamenting that I just can’t do this. I can’t keep doing this. And the reply was so direct and to the point, “Well what option do you have?”  They were right. I don’t have an option. I have to do this. For my kids. For Jim. For me.

I recently read an article that referenced a study about caregivers. In the study, it said that caregivers have a 63% higher mortality rate. I thought about that and decided that I was younger and healthier than most. But then I also realized that most of those caregivers in the study were only taking care of one person. They didn’t have two children to also care for. I wondered what that took my risk up to. I suppose I will never know. But I do know that I must endure. I must stay the course and learn a new normal. A normal that changes daily. A normal that sometimes makes it necessary to let it all out, even if it isn’t timely or quiet. It is part of the healing process. It is part of the survival process.

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

Funding Anyone?

Alzheimer's funding, alzheimer's disease

Last month I was driving to work in the early hours of the morning and I got angry. I was listening to a story on NPR about how in the 2003 State of the Union address, President George W. Bush committed 15 BILLION dollars to help fight AIDS world wide. I commend him and think that those efforts a decade ago are being felt now in the accomplishments seen in the fight against AIDS. Yes, I understand there are still people dying from AIDS, but the numbers are down. People are able to live productive, relatively healthy lives after a diagnosis. There is now hope, where there once was none. Truth be told, the US has spent more than $50 BILLION worldwide since that speech on the global AIDS fight.

Do you know how much our government has budgeted right now for Alzheimer’s Disease research? $480 MILLION. That is a long way from a billion and certainly an even longer way from $15 BILLION, let alone $50 BILLION.

Just to be clear about how ridiculous the numbers really are: our government spends OVER $140 BILLION a year on Medicare and Medicaid for those with Alzheimer’s Disease. They spend $480 MILLION on research to find a cure so that they won’t have to spend an increasingly astronomical amount on care. Are you getting the picture here?

WHY CAN’T WE COMMIT THE SAME AMOUNT OF MONEY FOR A DISEASE THAT HAS NO CURE, IS GUARANTEED TO BANKRUPT NOT ONLY OUR COUNTRY BUT DOZENS OF OTHER COUNTRIES AND DRAINS FINANCES, EMOTIONS AND FAMILIES FOR YEARS AND DECADES?

It is hard to compare apples to apples. You never want to have your words misunderstood. I am not, in any way saying we shouldn’t support the fight against AIDS or any other disease. If you are someone who is fighting that fight or losing a family member to it, the last thing you want is some blowhard talking about cutting funding and moving it to another worthy cause. I am not asking for any cuts to be made for other disease research.

They are all worthy causes.

alzheimer's disease, funding for research

My mother suffered a heart attack not that long ago. I was scared. I was completely taken by surprise and rushed to be by her side. But after a few days she was home, taking it easy and a year later she is enjoying celebrating 50 years of marriage to my father. I still worry and I still harp on her about taking care of herself, but somehow it is so completely different than watching Jim succumb to the overall evils of Alzheimer’s Disease. She was able to go back to her “normal” life and not lose any mental or physical capacities. There are not financial implications. There are no long term plans needed. She has a warning, she has doctors orders, she has hope.

My father is a prostate and skin cancer survivor many times over. Again, with each diagnosis, surgery and waiting game, I have gone through an array of emotions, which always includes lots of worrying, crying and plain terror. So far, he has remained cancer free, only needing large chunks of skin removed every couple of years. His prostate cancer seems to be in check. Over all, I think that having these scares has made me that much more grateful to still have both of my parents in my life. I am thankful each and every day they are here to help me because they are, at times, my saving grace and my shelter from this storm.

Cancer and heart disease run in my family. Both sides. 3 out of 4 grandparents have succumbed to one form or another of cancer. 3 cousins have been diagnosed, 2 are still with us; Because of advances in treatments which came directly from research. I have lost family members that I loved dearly to cancer. I raised over $4800 while training for and eventually running a half marathon for the Leukemia and Lymphoma Society in San Francisco. I dedicated that run to my cousin Jay, who passed away much too young, at 14, of leukemia.

I have seen the fight and the inability to win. But along the way, I believe the difference is in the ability to have hope. To have the chance to fight. The chance to win. With Alzheimer’s Disease, victims are not given any of those things. You are given a diagnosis and sent home to do research or not. To cry, or not. To tell others, or not. To raise awareness, or not. To see the doctor in 6 months, or not. To make financial plans, or not. To seek spiritual help, or not. There are NO rules, guidelines, or definitive game plans. You are left to your own devices.

I am beyond grateful for the fact that others before me took up other causes that needed research, funding, awareness and cures.  People that lost loved ones. People that were hurt, angry, sad, lost and eventually found by their hard work and dedication to a cause that had taken from them someone that could not be replaced.

Can anyone explain to me why we can’t do the same for Alzheimer’s Disease? Why can’t more people speak up? Why can’t more funds be allocated and disbursed? Is it going to take another Rock Hudson, Elizabeth Taylor and marches in the streets?

The problem arises with the simple fact that Alzheimer’s Disease isn’t contagious (though it can be hereditary).  It affects “old people” (tell that to the thousands of Younger Onset patients). No children are affected (except for the children and grandchildren that are scarred for life by witnessing the Long Goodbye).There doesn’t seem to be a lot of outrage at the lack of answers or cures.

Well, there is outrage with a few of us. I am mad. I am mad that there are people that can speak up and don’t. I am mad that people whisper and try to hide what they are going through. I am mad that frivolous things are funded but more research and programs to help families dealing with this horrible plight are not. I am mad that there are so many of us who have no help or hope or support.

Which would you rather be diagnosed with? Cancer, AIDS, Heart Disease or Alzheimer’s Disease? 3 out of those 4 have treatments and survivors. 1 does not.

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

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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)

Imagine

alzheimer's help

Please try to imagine something for a few minutes. Imagine you are not quite middle age, with fairly young kids starting to get involved in lots of activities. You have a fairly good social life, with a tiny bit of disposable income. Your marriage has weathered plenty of storms and the two of you have decided to stick around for the long haul while working on re-connecting. You are just cruising through life with your own fabricated worries each day. You work part time because you want to be able to take care of the kids when they are out of school. Your husband works full time and travels quite a bit so you get some time by yourself as well as time together.

Now imagine that your spouse starts saying really strange stuff. Not all the time. But just enough to be really annoying and become increasingly worrisome to the point he starts going to doctors and getting lots of tests. The two of you start therapy to no avail.

Now picture sitting across from a doctor, in uncomfortable chairs not really sure if you should be holding hands or taking notes. You hear words that you aren’t familiar with but are being said in a way you know means something is bad. Really bad. You want to cry, but your body has decided a form of shock is more productive than tears. You ride home together without really acknowledging what just happened. You search your mind for something positive to say. You want to revert to the old standard,” We will do some research and find a cure. We will beat this.” But you just heard things like, ”no cure” “no current treatments or course of action” and “start looking into power of attorney paperwork”. The two of you get home in time to pick the kids up from school and start the normal routine of life. But you have this new underlying thing ticking away inside of you. You know that you need to talk. You know that you need to plan. You know that you should be falling apart at this very moment, but instead you are planning dinner and checking homework. You stare blankly out the window in front of you, above the sink, cleaning chicken as your 5 year old is singing. Something about wheels on buses. You don’t really acknowledge any jokes or smile. The kids don’t understand. But you can’t tell them. You can’t burden them with your new secret. And you certainly don’t want to finally open the floodgates in front of them.

All of a sudden, your whole world has been turned upside down. Or you know it will be. Right now, everything seems pretty status quo. Nothing has really changed a whole lot. That will come in minuscule increments over the coming years.

Imagine waking up the next morning and each morning for the next 4 years,and as you slowly come out of the fuzziness of slumber, you have a flash run through your mind. The doctor. The words. The emptiness that is growing inside of your chest becomes larger and common. You heart aches and breaks each day as you helplessly watch your husband morph into someone you don’t recognize and don’t know. Can you feel the pain of holding them as they cry? Can you see the scared look in their eyes?

Can you picture the tears that start to fall when you least expect it? Now when you go to the Hallmark store to purchase a card, the words printed on the card seem like ironic, bitter wounds that are so painful you can’t even grasp not feeling the pain. Aren’t there any cards that don’t have something about “forever”  “grow old together” or “dreaming of the years ahead”?

The kids start to notice things. You finally must tell them. You aren’t sure what words you should use to spare them pain but at the same time provide knowledge and understanding. You start to worry. About everything. Ruining the children and their childhood. Finances. Relationships. Your home. Finding a job. Long term care planning. Research trials. Wills. Directives. Then one day it hits you so hard, so fast and so thoroughly you are not sure that you can move, breathe or think; this disease that has no cure runs in his family. The kids. More research, more questions and a mountain of worry fill your world.

How would you feel if you were no longer in the position to dream of a better life? What would you work hard for and plan for if you thought it was hopeless? Can you put yourself at a social gathering, trying to explain to friends that don’t understand, don’t see what you see and who suddenly seem a million miles away? Can you feel the heartache and the excruciating loneliness that starts to seep into your core? Do you really care anymore about anything? Are you able to see outside of your own world of pain and hurt and anger and isolation to remain a stable, sane part of society?

Eventually you are trying to navigate the very arduous social security disability tightrope, which is like having to deal with the DMV but with 100 times more paperwork, follow up and waiting. And when you finally hear back from them, it isn’t because you are done, it is because they need more paperwork and have more questions.  By this time your body is in perpetual slow motion and your brain is constantly feeling as if it is in overload and trying to shutdown. You wake up only when you have to. Suddenly you are working full time while your husband stays home. You quickly realize that your life before had been pretty damn good. Those days of volunteering at the kids’ school are gone. No more jogs or walks during the day. No more TIME to clean the house. Can you see yourself flipped upside down and shaken to the core while trying to work, manage a home and make every single decision in your family’s realm?

What would you do to pull yourself out of your fog? How would you smile and laugh and dream and feel love if you always had thoughts of death and disease running through your mind? How long could you live, knowing your future was going to entail watching your spouse simply forget who you are, who your children are and how to care for himself? But you don’t know how long the process will be. You could endure this for a couple of years or maybe 20 years. You think to yourself; I will be a widow when I am 53. But only after a very long road of watching him suffer and simply stop being himself and having to take care of him. Then I might have to take care of the kids. The nightmare doesn’t seem to have an ending.

You stop returning calls or attending parties. You can’t find words to put together to make a sentence that anyone would want to hear. Imagine going through the motions of life and feeling it is a waste of time to plan for anything past the next 5 minutes.

Now, feel the strength from within you finally breaking through, like a baby chick pecking out of its’ shell to begin life. It must search slowly, looking for the right place to start and eventually jabbing faster and harder and stronger until it can break free and see the light and the world around it. You are only able to do this with invisible arms reaching through to help wrench you out of the sticky mess while you are being pulled back into the darkness. The arms that surround you are family and friends who do not let you stay sucked away in your own misery and depression. The hands grab you: lovingly and forcefully tugging you towards something that has reason and meaning and life.

You have a mission. A cause. A purpose. You had never known you could do this. But you must. There is no other way to keep moving forward. You must be part of the solution, not part of the problem. It is the only thing that will allow you to find happiness, purpose and self worth again.

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)

Time to buy a new bucket.

Jim, Frances and Brad with our tagged tree. Nov 2013.

Yeah! We finally went and tagged a tree. Nov 2013.

Brad has fish. He loves his fish. They are in a tank in his room. He feeds them every morning and they have survived for over a year. Every month the rest of the family pitches in and changes out the water. It usually only takes about 15 minutes and is a nice team effort.

Recently it was way past time to do the fish tank. I was still in my PJ’s at 2 pm on a Sunday, having spent the day cleaning, baking bread and fixing a meal for a dinner party we were hosting. Our guest would be arriving shortly and I had everything planned out. I had time for the fish tank. This would fit in and work with plenty of time for me to shower and get ready while Frances baked some brownies.

We start the process.  I realize as the water is quickly rising up the bucket that we don’t have the second bucket for the water being siphoned out of the tank. I yell to Jim, who is across the hall in the bathroom filling water jugs, that we need the other bucket. He quickly runs outside and in a few minutes returns with another large bucket to put the completely gross fish water in.

All is going well until I look down and see that the bucket is leaking. Fast. There is a very long split in the side  and the water is going straight under Brad’s bed. Which is heavy.  And has drawers full of clothes under it.  Which the water is quickly disappearing beneath. Ughhh. And I let it be known that Jim got the wrong bucket (this has happened before). In the rush to find something quickly, he grabbed the one with the big crack in it that we had just discussed not 30 minutes before when he was collecting items to use for the water switch. I had reminded him NOT to get the bucket with the holes in it (for a drainage project he started months ago) or the one that leaked when we did the tank previously. Looking back, I am kicking myself for not paying closer attention; for not making him get rid of the cracked bucket; for not getting all of the items needed myself. You see where all of this can lead….to a person completely having a breakdown. So, I have to let go of the hindsight scenarios and remember for the next time. It is very difficult to be environmentally friendly and economical sometimes when you have a person with Alzheimer’s Disease living in your home. The easy solution is to just throw EVERYTHING out, which isn’t practical or environmentally sound.

Yes, I lost it just a little. Not as bad as I have in the past, but since I haven’t lost it in a while, it was a setback. It almost feels like an alcoholic that is counting the days. And then when you slip, you have to start counting again from day 1. I have to start back over. Damn. I had been doing so good.

Brad whispered to me a while after, when I was back in the kitchen fixing the salad…”I knew Dad was having a bad day when he forgot how to play table football.”

What do you say to your 9 year old son who has to live each day trying to figure out how his Dad is doing? But the worst thing he said: “Mom, please don’t be mad at him. He can’t help it. It isn’t his fault.”

Yes, I am starting over. Back to single digit days and working my way up to another milestone. My advantage? Two loving children who are keeping me on the right path and looking out for us both.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (4)

Jim and Brad in Mexico, 2007

Jim and Brad in Mexico, 2007

I have been a bit down in the dumps for the past couple of days. Not really sure why.  Could be the cycle of the moon, the stars, the weather….some kind of cycle anyway.

I tend to do that; highs, lows and in-betweens. I try to keep myself regulated with exercise, but I haven’t been able to do much of that. It is on my very long “to do” list.

I spent most of the past two days sitting at a ballfield watching Frances play softball. The girl loves softball. I think that is when she is happiest. I also think all of the other pains of life disappear when she can focus solely on the game at hand. Not what happened yesterday and not what is going to happen tomorrow.  Just focusing on the here and now. I could use a little of that. Couldn’t we all? Isn’t most of life’s pain reaped from thinking of what should have been or what is going to be?

One of the things I have tried to do since Jim has started showing more and more symptoms is to make sure he spends lots of time with the kids and to make sure he teaches them as much as he can while he can. The types of things that fathers teach their kids. How to hammer a nail, how to read directions, how to start a fire, about the games of football, baseball and hockey. Just life stuff that most of us take for granted. The fact is, most of the time (there are exceptions) we were taught many of life’s “need to know” lessons by our Dads. And Jim is full of knowledge that needs to be shared with his children. Things I just am not able to teach, share or demonstrate.

Since Jim was a military man, he is very good at lots of stuff. One of the things that Jim does very well is shine shoes. This may seem trivial. I am sure there are many people that have no clue how to put polish correctly on a pair of leather shoes . But it hit me the other day as I was driving down the road (as I usually am) that Jim needs to teach this technique to Brad. I am not sure why I wasn’t as determined he teach Frances (am I sexist to my own children?) but I called him immediately and asked him to put it on his list.

Today while I was sitting at the softball games I remembered the shoe shining request. I called Jim and asked him if he could do this with Brad before they had to leave for baseball practice. No problem. Except a 9 year old boy does not want to stop playing with his friends outside to come in and learn how to polish some shoes. I get it. I really do. But I also feel this immense pressure of time and uncertainty.

There is no guarantee for any us for tomorrow. How can I make sure as many of these life lessons will be worked into our daily routines at the most convenient time? When is it appropriate to make special arrangements and to push the lessons ahead of schedule?

Mexico, 2007

Mexico, 2007

It happened. Jim and Brad had some Father and son time. I am not completely sure but I have been told Brad got the gist of the task and has a pretty good idea of how to spit shine a pair of leather shoes.

I don’t like playing the “you need to learn from your Dad while you can because we don’t know how long we have” card with the kids. It is almost cruel and it is almost like blackmail. Or that is how I feel.  I do it sparingly and for the right reasons, but it is still pushing an agenda and reminding them of what is lying in wait for our family.

I would love to naturally let the progression of life take over and let life lessons happen in the time and fashion they normally would. But I don’t feel like I can. I feel like I will have regrets. I will think that I should have done more, tried harder, pushed more and thought to make sure things were done just so. It may seem like I put a lot of pressure on myself, but I think it is normal to want your children to learn and grow from their Dad. Especially if their Dad is an exceptional man with lots to share. Especially if he is encouraged to share said knowledge.

My heart is breaking. Every day. Sometimes it is overwhelming and sometimes it is manageable. Either way, it is the same really. It is for the same reason with the same ending and pretty much the same in between. How do I keep that “in between” from completely screwing up our kids? How do I keep that “in between” from completely screwing me up? How do I protect Jim? There are so many facets to think of and plan for. Who can really keep up and keep sane?

Jim and Brad in Mexico, 2007.

Jim and Brad in Mexico, 2007.

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)