Archive for November, 2013

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)

Happy Thanksgiving Week

Thankful-PrintableI am so thankful for so many things. During a time in my life when I could just as easily crawl into a hole, wallow in self-pity or let the anger than sometimes comes knocking take over, I struggle to stay focused on the good things that surround me daily. Each year during this time, there are lists upon lists of all the things much more articulate and witty people are thankful for and I usually agree with 99% of what they say. Don’t get me wrong, I am thankful I have a roof over my head, food on my table and health in my body. But those are givens….

My thanks come straight from my heart. There are days I really don’t think I can keep going or that I feel like I am slipping more than I am holding on and some miracle comes into my life to help me get a better grip and to regain a hold on my world.

I start with being thankful for my children. They are what motivates me, inspires me and keeps me smiling. I could write volumes about all they do that makes me proud and thankful, but for now I will just leave it at this.

I am thankful that I have Jim as my husband. He has been the most wonderful man, father, friend and each day he continues to lead our family by example. He shows us all how to put our big pants on, live each day as it comes and do the best you can. He has no expectations and so he is never disappointed. That is all any of us can ask or hope for, no matter what our situation.

I am thankful for my parents and my brother. Without them I just don’t think I would have made it this far. Unconditional love has surrounded me my whole life and they are the reason. I could also write volumes here, but I will spare you (and them).

I am thankful through and through for the people in my life who have made a decision to be in my life, not because they are forced to by blood or marriage. My friends. I am so very fortunate. I have friends in the best possible way….people who aren’t an intermingled clique, but who come in and out of my life as if on cue and for the right reasons. People I met when Frances was taking dance, people I met in 4th grade, people I met when we lived in Las Vegas, when I was in Bermuda, in college, in high school, friends I have recently had the good fortune to find, other parents from the kids’ school,  past and present co-workers, parents from softball and baseball….there are so many. And they understand I am changing. They understand that I am under stress and sometimes not myself. They understand that I sometimes talk too loud, drink too much, stay too long and get too sensitive and they keep me around anyway. They keep welcoming me and I seldom reciprocate and they understand and continue to include me in the fun anyway. I am thankful I have people surrounding me that are smarter than I and are not afraid to share their opinions, thoughts and advice. I am so eternally grateful and forever in debt.

I am thankful for the love and caring that surrounds me day in and day out. Without the small acts of kindness that are bestowed upon our family, I can guarantee you I would not be the person I am today. I wouldn’t be able to write this blog. I probably would have lost my job and my home and at some point, my kids. I just don’t feel like I am strong enough to do all I am capable of without my support system. There are some that I count on almost daily, some weekly and some just a few times a year. It is a marvel really. All of the help and support our family receives is really nothing short of a miracle.

My REAL thanks go to people I don’t know. I thank wholeheartedly the researchers that work so hard to find a cure for Alzheimer’s Disease. I can only imagine how frustrating it must be to go to work everyday and work on something that has no solution. Thank you from someone that thinks of you every day and is pulling for you to one day, come to work and never be needed again.

I thank my fellow advocates. Thank you for not giving up. Thank you for sharing your stories and for fighting when there doesn’t seem hope.

Thank you to the other caregivers and care partners that are getting up each day and setting such great examples of how to selflessly give when the person you are sacrificing for doesn’t seem to care if you even exist. THANK YOU!

Thank you to all of those afflicted with some form of dementia that speak out and share your story. Thank you for participating in research studies. Thank you for fighting and doing the best you can each day even though you are scared and frightened. Thank you to those that have paved the path for a better understanding of what we are going through.

Thank you to those that donate time, money and energy to finding a cure to this horrible disease that has taken over my life and so many others’ lives. Thank you for being so generous and for believing that one day, we will all feel a sense of accomplishment. We will feel we were part of the solution that has been found. This blog, our story and our advocacy will become obsolete. Thank you. Thank you. Thank you.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (2)

Great Ideas Come From Tiny Places

Brad and Mom, Aug. 2013.

Brad and Mom, Aug. 2013.

 

I feel like sometimes I don’t give my kids enough credit for how awesome I really think they are. Hopefully, all parents feel this way about their children, but I certainly believe I used up all of my luck finding Jim and having Frances and Brad as my offspring. They keep me grounded, they keep me focused and moving forward and they keep me laughing and having fun. They also make sure I am able to view the world through fresh eyes. How much more could a girl want?

I recently was fortunate enough to go to a big, fancy luncheon that honored some local philanthropists. Over 500 people were there. It was great to see so many “givers” in a world that often seems filled with “takers”.

Two of the honorees were young girls that have been raising money and volunteering at a home with programs for disabled children. They were so inspiring and selfless.  There were also local business owners that donate millions of dollars for programs to help a wide range of needs. I was just amazed.

That evening at the dinner table I told Frances and Brad about the luncheon. When I got to the part about the young girls and their acts of philanthropy, both kids were also impressed.  Brad took it a step further.

“We should do that. We should raise money to help someone.” (Guess he forgot about the money we just raised for the Alzheimer’s Association)

“Yes, you are right, we should.  Who would you like to raise money for?”

I wasn’t sure what I was expecting but kids are always full of surprises.  At his age, Frances had raised money to save the Florida Panthers, even asking for donations instead of gifts for her birthday that year. Brad is very concerned about Tigers so I think I was assuming that was where this conversation was headed.

“Alzheimer’s. Let’s raise money for Alzheimer’s research. I think that is what we should do. We could sell stuff. No! Wait!! I know what we can do! We can have a run. We can do a race like the one you did in San Francisco and raise money that way. And we can sell stuff at the race. We could raise lots of money and we could have fun. Should we do a mile, a 5K or a 1/2 or full marathon?” The conversation went on for quite a while, with Frances joining in wholeheartedly.

Proud Momma moment. At the same time, there was a tiny sorrow  seeping into my conscious. Is it such a good thing to have my 9 year old so focused on this disease, he jumps at the chance to raise money?  Shouldn’t he want to just get some money and go to the store for some baseball cards or a video game or something? It is ironic;  I am proud and at the same time wistfully sad.

I watched Jim as our conversation progressed and searched for clues on his thoughts. He seemed excited as well about the prospect of doing something and he didn’t seem sad or bothered or upset. Good.

I want him to know that we will be there for him. We will be there for each other. It is OK. He used to worry a lot about us and apologize. Jim has a horrible guilt that he carries with him about this disease and his children possibly succumbing to its tangles one day. I have assured him I will keep fighting and it seems, by having conversations like this one, our children will fight too. We are a team and I am glad he can see our strength and our determination to help others and help ourselves at the same time. As the disease progresses, it doesn’t seem to weigh as heavy on his mind. There are small, tiny blessings sometimes.

I only wish we could help him too. Why does it take so long for a cure? How can we speak to and see someone on the other side of the world but we can’t find a cure to a disease that is ravishing the minds of millions of people? People who are loved and who have so much more living to do? Why can humans figure out how much water is on a planet millions of miles away but we cannot stop a disease that is causing so much grief and heartache in our own atmosphere?

I am not sure anything will ever come of our race we discussed. But I do know it showed us how much our children want to help their Dad.

I don’t know what the magic number is…. how much is enough money? How much is enough time? How many is enough victims?

Jim and Brad enjoying some ice cream after picking strawberries. May 2013

Jim and Brad enjoying some ice cream after picking strawberries. May 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 (3)

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)

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)

Need a good book?

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This morning I was working at the dining room table as Brad was making his lunch. As I worked, he organized his crackers and carrots and we proceeded to discuss a wide range of topics.

Yesterday was election day and as always, we voted. Another perk of our neighborhood is the fact we can walk to our polling station and it doubles as our public library. Jim, Brad and I had driven over so I could leave from there to go to work and they could walk home. I love walking in the Fall with all of the leaves on the ground and swirling in the air as they release themselves from the branches. But I digress….. Jim and Brad stayed for a bit at the library and Brad picked out a movie on the demise of the Indian Tigers and 4 books. One of the books, The Disease Book; A Kids’ Guide, I found very telling. Did Brad choose this book to learn more about Alzheimer’s Disease or is he all of a sudden interested in Schizophrenia and Tonsillitis? A small inkling of worry had crept into my mind last night when I had gotten home late and seen the book sitting on the table.  I had meant to take a quick peek inside the covers, but I started watching results from the election and never did.

Back to this morning. Brad tells me about this book and asks me to read the part about Alzheimer’s Disease. It is a short bit under “Disorders of the Nervous System”.  I start to read without proofreading first. Smart Karen,really smart. “Alzheimer’s disease has been called the cruelest disease that humans have ever faced, for it gradually destroys the brain. Simple bouts of forgetfulness may be the beginning, but the ending is always the same.”

I read the very first sentence and stopped. Suddenly, I had this terrible mommy moment; knot in my stomach, light headed and a small bout of queasiness. I quickly decided that we did not need to read anymore. Brad seemed a little confused on why I stopped.  All of a sudden we were running a late and he needed to finish his lunch and I needed to get my work done.

THIS IS A KIDS BOOK. Really?

I think I would have rather read the parts on STDs or PMS with him.

Sometimes I am just not sure I am ready for this. For all of this that we, as a family, are going to go through. Obviously, my 9 year old son is looking for information and answers. I am just not wanting to hear the answers myself, let alone speak them out loud to him.

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)

Suck It Up

In St. Louis, 2000.

In St. Louis, 2000.

Sometimes, you have one of those days. And at the end of one of those days, it is so nice and essential to have someone you can talk with. Vent to. Explain and commiserate with. Then, after getting everything that has brought you to the point you are at completely out of your system, this same person gives you a hug. Or a joke. Or reminds you how awesome you are and that you will persevere. There is an easy back and forth and then an agreement that whatever or whoever is at fault for said problem is just not worth it and to just move on. Then, you do. And life becomes comfortable again. Togetherness at its best.

I miss that part of Jim. I miss the man that told me he loved me and how beautiful I am. I miss the Jim that could understand why I was upset about something and could simultaneously listen and make me feel better. Even if I was at fault, Jim still adored me and made me feel worthy.

The loneliness is excruciatingly painful at times.

I can handle physical pain. Really. I can. I think all the years of playing sports helps me tolerate physical pain and to understand it is temporary. “Suck it up” was yelled my way more than once and the sharp pain that would resonate through my midsection as I was sprinting up and down the floor was felt, pushed aside and eventually went away. Elbows to the face or body were just part of the game.  I just recently had oral surgery that was quite painful, but I didn’t take the prescription medicine. Didn’t feel the need to. I guess I take a bit of pride in my ability to handle pain. It just comes with life.

I am not too sure though about my ability to handle the emotional pain that I live with. This pain also comes with life but this pain is always lying in wait and doesn’t feel temporary or like it will be going away anytime soon. This is a whole different ball game.

I suppose I am a needy person. I need feedback. I need ideas. I need reinforcement. I need companionship and familiarity. Jim still gives me so very much. As much as he can. I realize this, but it doesn’t change the fact our conversations are no where close to the candid, open, intelligent dialogues of the past.

I miss the man that knew something was wrong and set about making it right. I am learning how to make it right on my own. I am learning to “Suck it up” off the playing field. The same essential rules still apply: No whining. No crying. The outcome of the game isn’t always fair…..

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