Archive for October, 2013

Happy Halloween

Halloween, 2008

Halloween, 2008

Halloween. Our kids LOVE Halloween. They love to dress up. They love to get candy not normally allowed the rest of the year. They love decorating. They love being part of all the festivities in our neighborhood (we usually have over 300 kids stop by for candy) and they love going to pick out pumpkins and getting lost in a corn maze. Truth be told, I love it too. Only in the past 7 or so years have I fully embraced how fun it can be to put on a wig, crazy outfit and cut loose. Becoming someone else for a night is quite freeing and invigorating.

This year has been so hectic and busy, I have failed them. I didn’t find the time to take them to the pumpkin patch, as we have done every year.

I know I shouldn’t feel guilty. The main reason we didn’t have time was due to their schedules, but there is still a part of me that knows I could have figured out a time if we had rushed or moved things around or made more of an effort.

2011

2011

I thought I was in the clear.  I had fleetingly thought of trying to work it into our schedules, but had quickly forgotten. Then last night they both asked me when we were going to go get a pumpkin and carve it. Frances was clearly disappointed there would be no adventure through the fields of dusty, brown stalks and I realized they had been counting on me to keep up the tradition.

So, I sit, contemplating what are important things to them as children and what is something worth skipping? How to tell before it is too late? We have traditions with just about every holiday. As Jim progresses, life gets busier, they grow older while  becoming more independent, which traditions will stick and which will only be recalled when we peruse through old photographs?

Halloween 2008

Halloween 2007

I am realizing that I put so much pressure on myself to keep our family as it was, or really how I envision in my mind it should be, I miss opportunities to keep moving forward and organically grow as a unit. I need to stop fighting whatever is going to happen. Much harder to do than to say.

Many well intentioned people tell me how sad our situation is and how sorry they are for us. That is very nice and I say the same things when the tables are turned and I am speaking with a friend who is going through a rough time. It is just what we say. But I don’t feel like I live a sad life. I have a beautiful family with two healthy, loving, smart children. I still have both of my parents and my grandmother with me. I have a husband that loves me and would do anything he could to keep me happy. I have a job. I have a home. I have good friends, acquaintances and people all over that care about my family. I am blessed with so much.

Yes, there is a part of my life that completely, utterly sucks. But it is one part of my life I have no control over. How I handle Jim’s progression and the oncoming dilemmas will determine if I can remain happy overall. If I am able to compartmentalize the different areas of my life, I am thinking I can remain positive, strong and content.

Halloween, 2009

Halloween, 2010

So our family will celebrate Halloween and we will not have jack-o-lanterns this year. We have costumes, we put up a few decorations and we have a whole neighborhood to have fun with. That is what Frances and Brad will remember and that is what makes memories.  I must focus on what I can change, not trying to figure out a way to change things beyond my control.

Getting ready to hit the corn maze, 2011.

Getting ready to hit the corn maze, 2011.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (5)

Patience is Indeed a Virtue.

Christmas 1998

Christmas 1998

Patience.  How I wish to the heavens above I were a more patient person. Unfortunately, all of my life I have struggled with this very thing. I distinctly recall as a young girl my Father talking to me about being patient and  learning to relax. Many years later he is still telling me these same things. It seems such a cruel joke for me, of all people, to be put into a position where each day brings a new level of need that I could never have foreseen. When you are a mother, a full time employee and a care partner to someone with Alzheimer’s Disease, patience seems to always be flittering just out of reach.

I somehow find the patience to deal with work, although there are times I can tell I am not quite as tolerant as I used to be. I have patience to deal with the person who just cut me off while driving. Or the call center person that answers when I call for the 3rd time about a bill that is incorrect. I have patience for the person talking loudly on their cell phone next to me in a restaurant. Somehow I manage to tolerate a rude server or incompetent customer service rep.

Where I seem to be lacking in patience:  a combination of two kids and a husband that sometimes makes me feel like I have a 3rd kid. The people I love the most are the very people that will bring out the utter lack of restraint I possess. By the time I get through my workday, I am sometimes on the cusp of a meltdown. Then to find out one of the kids forgot their homework or that Jim didn’t check to see if Brad had homework and instead stayed at the park way too long so we are now rushing to get something to eat and out the door to practice or piano and homework and reading will have to wait. Homework comes first, right? Or when someone finishes up the bread, milk, bagels, cereal, fruit, etc. during the day and doesn’t mention it to me so I can pick it up on the way home. I find out we are out of something the next morning when it isn’t there to fix for breakfast or to make for lunches.

If I only had to deal with one area of my life that needed patience, maybe that would work.  But it seems that I am constantly needing to use every ounce of tolerance I possess and search within me for any reserves. Sometimes there isn’t any to be found.

Then the guilt comes. Although I am getting better about the guilt, I see it as a gift to keep me in check and to encourage me to be the calm I want to see in the world.  Especially my own world.

Those of you that read my words who have traveled this path will certainly understand and probably relate. Those of you reading my words without a  personal experience living with someone with Alzheimer’s Disease will hopefully become more educated and garner a better  understanding.

In the past two weeks I have: walked in the door to find that Jim has taken ALL of the fire alarms down and laid them out on our bar in an attempt to find the one that was beeping (he even grabbed the one out of the attic); found my treasured “Life Is Good” mug hiding above the dryer with a huge chip missing after Jim had told me weeks ago he had broken it and thrown the pieces in the trash outside; had to reprimand Brad for disrespecting his father and taking advantage of our situation, while Jim was standing there aloofly listening; discovered Jim sleeping with his jacket on in our bed with two quilts and a blanket also covering him; found an overflowing basket of wet clothes sitting outside and Jim not recalling when he took them out there; asked Jim to keep an eye on the heat pump I had just turned on for the winter to make sure the water was flowing through the radiator pipes, upon returning a few hours later from softball practice I realized the heat had not come on, Jim had completely forgotten and the house was freezing. I have witnessed a slight decline in Jim over the past few weeks that starts the heartbreak train and the emotional inner-turmoil churning. Yes, you can know that someone is going to get worse and read all the books and speak to all the specialists. But it cannot prepare you to be a bystander as it unfolds in realtime.

By sharing these stories I am not putting Jim down or trying to have anyone feel sorry for me. I think it is important for everyone to understand that having Alzheimer’s Disease is just that; A DISEASE. There is nothing to be ashamed of. It is more than forgetting who someone is or getting lost. It is a frustrating life that can wear even the strongest person down.

The REAL irony and truly sad part is Jim is probably THE most patient person on this Earth.  If the roles were reversed, I cannot imagine him not being patient and understanding. He always has been, even now. He doesn’t get mad and angry and just accepts what comes as it comes. He continues to teach me so much and is helping me grow into a person that is so much better and stronger than ever before.

The next time you see someone in the store, or driving down the road or in a restaurant and they snap for something that doesn’t seem like that big a deal, please stop and remember you don’t know the fifty things that happened before that moment they had dealt with. One minor thing can release the flood gates that have been held together by a wall of crumbling rocks.

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

It’s coming….

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I don’t love Jim anymore than millions of other people love their spouses. When I say this, I mean it in a way that conveys understanding that others love just as I do. As we do.  Sometimes I find myself wondering what my life would be like if I hadn’t met Jim. If I hadn’t been forced to deal with Alzheimer’s Disease and become so involved in helping others.

When I try to envision a life without Jim, without our children and now, without being immersed in all things Alzheimer’s, I am left with a blank mind. I am unable to see my world without Jim, without Frances and Brad and now, without the friends, colleagues and support I have found through my Alzheimer’s world.

I have been blessed recently. I have been blessed with dinners, gift certificates, financial support, help around our home, notes of encouragement and with renewed energy to make a difference.

As I accept all of these blessings, I do so with a bit of guilt. Why? Because I don’t feel like I deserve anything. I know there are so many others going down this same path who are on their last rung, last bit of rope and they are struggling just as I am to hold on. Who is to say I deserve help more than they do because I speak out? Because I get an article in the paper and I have a blog and I have friends and family that come to my rescue daily?

I am only one of MILLIONS of people in this world travelling this downtrodden path. I have chosen to speak out and share because I can. Because MY personality lends itself to be able to. Why should someone who is more private or more soft-spoken or just plain shy not reap the same benefits I do?

There is survivor’s guilt (which I already have even though Jim is still very much here) and then there is spokesperson guilt. Who knew this even existed?

My question to myself is What am I going to do about it? I have a plan. I am going to help others. A LOT of others. But, I have to get my ducks in a row and figure everything out. If I can do this, not only will I help myself, I will be able to help so many others it isn’t even funny.

Give me a little bit of time. Give me some patience and some support. I have a desire and there is a need. We will work together to get this started and then get this done.

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)

Please stay their Dad

 

Jim trimming the hedge. Oct 2013

Jim trimming the hedge. Oct 2013

 

“Mom, we don’t have any internet.”

“Ok, let me see if I can figure it out.”

I spend the better part of an hour trying to re-configure our wireless service, at the same time I am trying to fix dinner. I click all the right icons on the computer. I turn on and off the router. I call Verizon and stay on hold for much too long.

“Ma’am. You have no power going to your box. Is your home without power?”

“No.”

“You may want to check to see if the power cord is plugged in to your Verizon box outside.”

My usual response would have been, “Of course it is. No one has unplugged it. Something is wrong with YOU.”

But, I knew Jim had been fiddling outside today now that it had stopped raining and he had been working on trimming the hedge (which required power). My gut sank just a smidge.

I got off the phone, went outside, and sure enough, the power cord to our cable/internet box was dangling in midair.

I cannot focus on the time wasted. Or the fact that Jim would do something like unplug the cord, not remember unplugging the cord or not realize that he had once all of the chatter started in the house about having no internet or cable.

The hollowness I feel inside is becoming commonplace. It stays with me much too long. Although we have these episodes almost daily, it is nearly impossible for me to accept the upheaval that comes with each one. The time lost. The items broken and needing to be replaced. The mess left untouched. The items put in the wrong place.

The school notice that gets signed but there is no discussion or ramifications.

My heart is really breaking. Not only did we have the internet/cable episode, but after Brad went to bed I looked at his agenda to sign like we responsible parents are required to do daily.  Hmmm. He has a test tomorrow. I wonder if he brought home his social studies notebook to study. I wonder if he did study. I had asked him if he did his homework, but I hadn’t really pushed the issue.  Why didn’t I look at this before? Oh yeah, I was working, taking Frances to violin, fixing dinner and trying to fix the internet service.

As I search through his backpack for his social studies notebook, I see a slip of paper. I pull it out and see it is a notice that he had been disruptive in class. There at the bottom of the page is Jim’s signature.

“Jim, did you sign this?”

“No.”

“Is this is your signature at the bottom of the sheet?”

Jim grabs the paper, does a little hmphfffing sound, hands it back to me and says ,”Yes. I did sign it.”

“Did you talk to Brad? Do you know what this sheet is? ”Deep down, I already knew the answer.

“No.”

So, although Jim is capable of driving, trimming our hedge and doing dishes, I am asking Brad to make sure I am the one signing such paperwork from now on from school. I can’t count on Jim to play the Father card and discipline Brad and make sure that I know what is going on at school. Last year we missed several things because I had no clue. Another guilt trip….

I feel horrible. I don’t want to override him as a Dad. Jim  is a GREAT Dad. He loves his children immensely. He has patience like no one else I have ever seen. He is someone to emulate. But, I learned last year the hard way when I found out no one was helping Brad with his homework or going over schoolwork with him. I know some things are inevitable, but it doesn’t make it hurt less to go through them.

Jim just misses the boat slightly. It just can’t click with him that he is the DAD and it is his responsibility to stop the tantrums, stop the talking back and yelling, stop the arguing, focus on manners and chores and follow up with questions if the agenda says there is a test tomorrow.

I think Jim is so focused on himself, he can’t focus on someone else. And I say that with no disrespect to him. He must focus so hard on each thing he is doing, each thought he is trying to convey and hold together, it is just too much for him to take on the added burden of overseeing the children on a day in and day out basis.

I have said it before and I will say it again. Jim has always been a better parent than I. His patience, his knowledge, his ability to relate and to work hard are great examples and make him a great Dad. I am sadden beyond these words can express that our children won’t get the benefit of his great parenting skills as they traverse through adolescence and into adulthood.

Jim and Brad building a tower of power Oct 2013

Jim and Brad building a tower of power Oct 2013

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (5)

Are you With Me?

In Las Vegas, 1998

In Las Vegas, 1998

When I was much, much younger, I wanted a Nissan Maxima. The style of the early 80’s car appealed to me. Into my late teens -early 20’s, I wanted a white Jeep. Then, I moved to Las Vegas and got caught up in glitz and glamour and wanted a Mercedes E Class. After a visit to Glacier and Yellowstone National Parks, I was fond of Subaru Outback’s.

I never owned any of those vehicles, Money or practicality overrode any desires. But even without owning one, I grew tired of that particular model and moved onto another. Always wanting something else. I now drive a mini van. I don’t really like saying that. I don’t like thinking that I am a Van Mom. But I am and I have learned to own up to the inevitable. I have 2 kids. They play sports. Therefore, we need something that has enough room for a cooler, two bat bags, luggage and other stuff that always seems to be piled into the back of the van, including additional kids.

I no longer look longingly at a Mercedes or a Jeep or any other vehicle. I have become satisfied with what I have. I am not even sure I would buy a different car should I win the lottery.

I am typically not a complacent person. Just the opposite. Always wanting to learn something new, meet new people, see new places and always wanting to move on the next best thing.  Since I have been dealing with Alzheimer’s Disease, a situation  that I have NO control over, I am slowly, slowly learning to accept life. Accept what we have. Accept what others can give. Accept what we don’t have. Accept our fate. Boy, that last one is really hard when your natural inclination is to push back hard enough to defy fate.

When I met Jim, I stopped looking for anyone else. I knew when I met him, he was it. Over the years, I became a bit complacent and accepted our life. He was the man of the house, I was his wife with lots of opinions and most of the time we agreed on the order of things. It was just easy to travel along at status quo.

When my Mom and I went to try on wedding dresses, we browsed through the showroom and must have had 15 dresses hanging around the dressing room. I tried on the first one and said, “This is it.” Both my Mom and the saleswoman kept encouraging me to try on the others. “No need. That would be a waste of time. This is the dress.” I was sure and I have never regretted my decision.

Sometimes in life, you just know something. You know when you walk into a certain home that is for sale that this is your home.

You know when you hold your children for the first time that you will love them unconditionally forever.

You know when you find a calling or a friend or a career.  I have finally found my calling. Have you?

“First they came for the communists, and I did not speak out—
because I was not a communist;

Then they came for the socialists, and I did not speak out—
because I was not a socialist;

Then they came for the trade unionists, and I did not speak out—
because I was not a trade unionist;

Then they came for the Jews, and I did not speak out—
because I was not a Jew;

Then they came for me—
and there was no one left to speak out for me.”

Martin Niemöller

This poem was printed years ago in Dear Abby. My parents cut it out of the paper and posted it on our refrigerator. I always loved the meaning behind the words. I always aspired to live up to those words. I am not sure I have had the chance in the past. Maybe I did and let the opportunity drift by without noticing what I could do. I now feel like I would not be living up to the fire and wisdom Mr. Niemöller spoke of if I don’t tell our story. If I don’t try to help others in our same situation, will I be able to look myself in the mirror years from now? If I focus just on my personal loss and our family and don’t try to help others understand, am I  doing my part to end an epidemic that is at hand? I have a voice. YOU have a voice.

I read memoirs sometimes that relate childhood experiences. Which makes me consider how my own children would write their story one day should they choose to. What would they say about their Mom? Their childhood? Their Dad?  I don’t live my life by this thought, but every once in a while I ponder the questions. When I do, I realize that I hope they would be able to look back and know their Mom loved them above all else. I hope they know that their Dad was a smart, funny, sincere man. I hope they recall days of happiness and years of contentment. I hope they realize the sacrifices and the heartache that their parents went through on their behalf. Finally, I hope they can write a story of triumph and not of tragedy.  My dream would be for them to feel as if their Mom helped others and helped bring about a cure and a change.

There is something to be said about being content, but there is also something to be said about ambition, drive and searching for more in life. Is it a sign that I don’t have the drive and spirit in me anymore because I no longer look longingly at a vehicle?

It is time to push myself even harder and further; many people are depending on me. I am depending on me. My kids are depending on me.  Lovers and parents and siblings and children are depending on me. I am ready. Who is with me?

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)

Who is looking out for them?

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Not too terribly long ago I stopped by a dry cleaning store for my work. As soon as I stepped  through the glass door, I knew that something was amiss. I could see the older woman, with her back to me, was disheveled and was speaking too loud and with too much animation. I could see the fear and uncertainty in the woman behind the counters’ eyes. Both looked up as I walked in. No one else occupied the tiny reception area.

As I waited my turn, it became apparent to me that the customer speaking to the cashier was suffering some form of dementia. The longer I stood there and listened, the more upset I became. The worker was completely lost as to what she should do and what to say. The older woman was claiming her son had been abusing her, her husband abused her, she eventually started telling us about her childhood and her father, who was a pastor, and how he had treated her so well and how much she missed him. We listened and and listened for almost 30 minutes. As I was listening I was trying to figure out what to do. I needed to be home to take Frances to practice and I needed to finish work for the day. But I couldn’t move. I was unable to leave.

The pain, the heartache and the absolute desire to help this woman instantly kicked in. I took over the conversation from the lady behind the counter. My new friend and I held hands and went back and forth. She was all over the place in her thoughts. Moving rapidly from present day to conjuring memories of a life she hadn’t lived in decades.

I surprised myself with the compassion and a sense of protectiveness for this complete stranger. Throughout the ordeal, I found out the police had already been summoned and no one answered when her home was called. I was allowed to look in her purse to try to find an address or another phone number. Nothing. Nothing. Nothing. It was so frustrating to try to help her and not have any way to do it.

Eventually the police showed up and they did a wonderful job talking to her and helping her. They sent someone to her home. No one was there. Eventually they tracked down her son. The one she had claimed slept on the couch all day, didn’t work and didn’t feed her. I had been doubting her story. Then when he drove up, he didn’t speak to her. He walked into the store and didn’t even announce who he was and why he was there. There was no concern for his mom. There was no thanks to us for helping. It was the strangest and saddest thing.

We walked to his car. Filth. Everywhere. The back seat and much of the front was covered with stuff. Lots of stuff. There was barely room for her to sit. I hated letting her leave. I did however make sure I let him know that she needed help. I told him she needed a bracelet to wear that had her information on it. I told him he needed to keep an eye on her and take her to the doctor. He completely ignored me. Which made me even madder.

I have thought many times about the woman at the dry cleaning store. She taught me so much. One important reminder was to have patience with Jim. At the time, I had been having a really difficult time with our situation and I had been losing patience with Jim and the kids. With her, I had plenty of empathy and understanding. There was no anger. Why could I be there for her, but not for my own husband? Something about this was unsettling.

I have also thought about the fact that people are charged with child abuse and neglect if they don’t take care of their children. If a child had wandered away and been found miles from home, making accusations of abuse, there would have been an investigation.  If a dog is found abused and not taken care of, the owner is charged with animal cruelty. Yet, an older adult can be just as lost as a child or a dog and the people in their life that should be watching out for them have little consequences. If they don’t take the necessary precautions to keep the afflicted safe, who will know? Yes, there are some cases of elder abuse. Those few charges usually take a very long time to prove and it takes a lot of documentation and a lot of abuse to happen first. Why? If someone has the mental capabilities of a child, why aren’t they protected like a child?

Immediately after this episode, I decided Jim needed a Medic Alert bracelet that will have a way to help him or someone that finds him get in touch with me should he become lost. He isn’t at this stage, but I would rather be prepared sooner rather than later.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (9)

Accepting our fate?

“BRAD TOLD ME HE WANTS TO BE A CHEMIST. I WENT OVER OPTIONS FOR SCIENTIFIC JOBS IN CLASS AND HE SAID IF THE BASEBALL THING DIDN’T WORK OUT, HE WAS GOING TO BECOME A SCIENTIST AND FIND A CURE FOR ALZHEIMER’S DISEASE.”  —Brad’s teacher at Back to School Night.

One night this week I had to work late. I didn’t get home until almost 9:30, after working since 8 a.m. I was tired, I was wanting to relax and I was a little hungry.

Frances was still awake, as usual. She wills herself to stay awake until I am home and she wills herself awake in the wee hours of the morning to see me before I go.  As I went into her room to kiss her goodnight and check on her, I realized I was worn out and just wanted to go to bed myself . Brad was sound asleep. I go back downstairs to unwind a little. I hear Frances go to the bathroom. A minute later I hear her calling me upstairs, telling me something is wrong and I need to come up right away. I immediately have thoughts of blood and a possible need for an emergency room visit.

As I am coming up the stairs, she tells me the sink exploded. As I get further up the stairs, she changes to a story of not the sink, but, just come see.

As I turn into the bathroom, I look at the sinks and nothing. She points to the cabinet. “Look, there Mom.”

What the Hell?

The shaving cream Jim uses and puts on the very top shelf of the bathroom cabinet had exploded and there were 3 shelves with fluffy, light blue foam all over them.

She tries to tell me she didn’t know what had happened. I can hear in her voice that she is worried I am going to be upset. I can tell she is scared for my reaction. I tell her it is ok and to go to bed. I thank her for telling me. Inside, I am completely aggravated.

10 feet away our bedroom door is wide open and I know Jim just went in there. I know he can hear our exchange. I know he knows I am cleaning up this mess. I am really frustrated that I haven’t been home 30 minutes from a very long day and I am cleaning up something he knew about and didn’t recognize to do. Frances had told me it was like that earlier. And I know Jim had just been in there before he went to bed, after I got home.

What can I do? I clean it up and head back down stairs. Trying not to be upset with the fact Jim is in bed, relaxing, as I clean up the shaving cream and never bothers to get up and even offer to help. The fact I am hungry and exhausted and just plain worn out seems secondary to all that needs to be done around the house. How in the world will I ever find the energy or time to get this house cleaned up?

The same scenario had unfolded just a couple of days before when Frances broke a glass on the kitchen floor that was full of ice water. Jim sat at the table, eating his meal as I tried to clean up wet glass. Again, my insides were churning. An impasse has come and an impasse has gone. I think.

Mixed interchangeably with the frustration of having to clean up a mess is the realization that someone who normally would be beside you to help is sitting on the sidelines watching; with little reaction or recognition of the situation.

I am growing as a person. I am not questioning him about it. I am not yelling, I am not even mad.

And I know that I am subcoming to the disease too. I am losing my hope. I am losing my fight.

That is sad. To lose hope and to stop believing and fighting is a sign that you have accepted the outcome. That is very distressing and uncomforting.

So, I continue to fight. But not with Jim. Not with the disease in my home. I will fight this disease on an even playing field. Where it counts. Raising money, raising awareness and fighting for research and help with care.

Please join me in the fight.

Please make a donation to my Walk to End Alzheimer’s Team.

Click HERE to donate.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (14)