Archive for April, 2013

Love my Hood

 

Thank you Tara M. Farrell Photography for this wonderful collections of photos from our neighborhood.

Thank you Tara Farrell Photography for this wonderful collection of photos from our neighborhood.

 

I love my neighborhood.  I mean, I FREAKIN’ love my neighborhood.  We have sidewalks, a tree lined Main Street that comes with a 4th of July parade, cottage style homes built circa 1918, Easter Egg Hunts in a Ravine, Halloween nights than include over 300 kids stopping by  and good neighbors. Our kids walked to pre-school and elementary school, we can ride bikes to the library and a yummy cupcake store. The elementary school is located on a historic river that has beautiful sunsets, a fishing pier and a playground.  I can walk to one of my favorite restaurants of all time, which comes in handy after a few drinks. We have a

Our neighborhood pier in the winter.

Our neighborhood pier in the winter.

neighborhood women’s group that meets once a month, a book club and garden club (ok, I don’t really participate in the book and garden clubs, but it’s nice knowing they are there). We have acquaintances and friends.  Good friends. I have the type of friends that when I disappear for weeks on end or don’t show up for a party or two and don’t return calls, they will come knock on my door and want to know what is going on.  They care.  I know they do and they show me.  I can walk or ride my bike to their homes and my kids can do the same.  It isn’t uncommon to come home to a note, flower or some small gift left on my front porch. When I have one too many and I get sappy and sad and start to feel sorry for myself, they let me. And then they are still my friend the next day and tell me it is ok, I am allowed.  I wouldn’t have been able to start this blog or continue with this blog without the support and help I have received from them. I am not sure I can really put into words the pulse, love and sustenance that comes from being part of this community. We have lived here ten years and although I sometimes complain about the small yard or small house, old windows, old bathroom and work that constantly needs to be done, I absolutely love my neighborhood. But the problem is…..

When someone has Alzheimer’s Disease, they no longer see things that have to be fixed or quite understand how to fix them.  Remember when I said the neighborhood is circa 1918?  With an almost 100 year old house come LOTS of little things that constantly need to be done.  Some are simple. Some take more time and brain power and some take lots of money.  Jim worked with electronics in the Air Force, so in the past, he was able to do those little things around the house.  He was able to multi-task. Changing outlets, putting up ceiling fans, painting, putting up wood trim, caulking around the tub….all the things that home ownership requires were easy.  Now I feel like the house is falling apart around us.  I’m not allowed to get frustrated with Jim for not being able to do it anymore. I sure as Hell can’t do most of it myself and I don’t have the funds to pay someone every time a little something needs to be done.  Coming home to chipped paint, old outlets, and weeds upon weeds is driving me crazy.  Well, one of the things driving me crazy.

Frances heading to the Fourth of July parade, 2007

Frances heading to the Fourth of July parade, 2007

Jim has been out of work for over a year.  I made the terrible mistake of realizing he has been out of work for over a year and hasn’t gotten one single project done around the house.  NOT ONE.  First of all, I need to stop thinking like this, it isn’t productive and it doesn’t do any good.  Second of all, not one project in over a year.

Ok, I’ve made my point.  So, while I am wondering how to remedy this, I am forced to recall something I heard at one of my first Alzheimer’s Support Groups:  Don’t focus on what he can no longer do, focus on what he is still able to do. He still makes the kids’ lunches and walks our son to school.  He still does dishes and helps with the laundry and vacuuming and cleaning the bathrooms and mowing the grass and going grocery shopping (that will be a whole other story).  He is still doing.  Breathe Karen.  He is still here. In the now, love his abilities now and put the things he used to be able to do in the memory bank.  Realize that person is gone and the person you have in front of you now is doing the best he can for as long as he can.

Brad searching for Easter eggs, 2009.

Brad searching for Easter eggs, 2009.

Each day I must repeat these steps.  As the man I have known for over 17 years slowly slips away from me, I am forced to change my ideas of the perfect life and what is acceptable and what isn’t.  I have to let go of wanting my home to look like a Southern Living Magazine. Or at this point a home that doesn’t need a million things done to make it as nice as everyone else’s .  There, I said it out loud.  I still compare parts of my life to others and let’s face it;  My life isn’t like ANYONE else’s that I know and won’t be for a very long time. I need to accept the love that fills my home and realize that is what is really important. Thankfully the neighbors and friends I just spoke of don’t keep tabs on the work that needs to be done or the fact I no longer invite them over for dinners or gatherings.

Besides, isn’t it every woman’s dream to have a spouse that does the dishes, bathrooms and vacuuming? Even if it takes him 3 times longer than it used to?  Even if I catch him using the dish detergent to clean the bathtub? As a good friend pointed out, “It made the bathroom smell so much better than Lysol.” So there! I have friends that can keep me in the now and  I have every woman’s dream man. And he is mine, all mine baby!

 

 

 

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)

The Ask

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Meeting with Congressman Scott Rigell in April 2012.

I am trying so hard not to become “that person”. That person who only posts things on Facebook about their cause. That person that takes over every conversation discussing the latest research and asking everyone within ear shot to listen. It takes a concerted effort not to drone on and on about the ongoing saga Alzheimer’s is writing with my family. I suppose I get to do that enough with this blog.

There is nothing wrong with being so dedicated to a cause and I certainly understand how easily this can happen to a person. If you have an issue you care about passionately, then you are making contributions to this world and I applaud you. At the same time, I am striving for balance. I am wanting to become that activist and at the same time remain the person I was before A.D. Quite the trick considering there is little in my life that isn’t revolving around Alzheimer’s.

Jim and I on Capitol Hill asking for help from our nation's leaders. April 2013.

Jim and I on Capitol Hill asking for help from our nation’s leaders. April 2013.

Jim and I just returned from our civic duty working the halls of the Capitol in Washington D.C. to beg our elected officials for money. Yes, we know there isn’t any money to be found. Yes we know there is a sequestration going on. Yes we know that many people don’t have jobs (remember, Jim was laid off due to government cuts). But we also know that NOW is the time to find a cure. NOW is the time to change the course of this disease. Money was given for cancer research. Cure. Money was given for AIDS/HIV research. Cure. Money was given for Diabetes, Cardiovascular Disease and Polio. Cure. Cure. Cure.

For several days we were immersed and surrounded by all things Alzheimer’s while attending the Advocacy Forum hosted by the Alzheimer’s Association. Others affected, others fighting the cause, doctor’s doing research, caregivers and care partners. This was a great opportunity to meet fellow members of the “my life has completely changed and turned upside down due to Alzheimer’s Disease” club.

For three days we were submerged in numbers and stats and information. It was enough to make my head explode.

*In the last 30 minutes Alzheimer’s has cost the US over $11 million and 26 more              people have been diagnosed.

*1 in 3 seniors dies with Alzheimer’s or another dementia.

*Alzheimer’s is the only top 10 cause of death without a way to prevent, cure or even slow its progression.

*Of those with Alzheimer’s Disease, an estimated 4 percent are under age 65.

*Alzheimer’s is the most expensive malady in the U.S.

*Our government spends almost $150 BILLION on Medicare and Medicaid for those with Alzheimer’s Disease, but gives less than $480 million for research.

*There is NO cure or treatment for Alzheimer’s Disease.

I could keep going, but I don’t want your head to feel like it will explode too.

Meeting with Senator Mark Warner and his staff April 2012.

Meeting with Senator Mark Warner and his staff April 2012.

 

Then the moment comes where we are sent over to the great land of wheeling and dealing. We are decked out in our purple, with our information in our hands and a great need and desire in our hearts.

 

Asking for help. Asking our elected Senators and Congressman to listen and have empathy and somehow find the funds to make a difference in millions of lives in the US and around the world. When you throw the stats at them, it seems like such a no brainer (again, no pun intended) When you share heartfelt, tear jerking stories, it seems like there is no way they can turn you down. There were almost 1,000 of us from all over the country.

But you realize they have group after group accosting them each and every day with their sad story and their numbers and they too are looking for help and money.

It is going to take a movement of the people to make a change for the people.

The ask: I ask each of you that read this blog, that feel my pain and my heartache and my fears to help. It will only take a few moments of time. AND IT IS FREE TO DO!  It is easy to do. It is your civic duty to let the people who are working for you know how you would like for them to budget and spend your money. Remember at election time when you are told you aren’t allowed to complain if you don’t vote? You aren’t allowed to ponder why there isn’t a cure for Alzheimer’s unless you contact your representative and tell them this is important to you. Share your story. Share my story. Share your friends’ story.

Research is showing that the actual cause of Alzheimer’s Disease  (plaques and tangles building up in the brain) starts about 10 years before symptoms show themselves. In Jim’s family the magic age of obvious symptoms is about 48. That puts the initial start of the disease around 38 in his family. Frances is 12. It takes an average of 12 years and $350 million to get a drug approved and on the shelf. That gives us very little time to actually get a budget passed and money in the right hands to start figuring out a cure. I am scared. I am scared I will take care of Jim and then have a couple of years before I have to start taking care of one of my children. That is why I am on a mission. I am going to be part of the solution. How could I possibly look my children in the eyes if I don’t do something?

  Find out (if you don’t know already) who your representatives are in Washington D.C.

http://www.house.gov/representatives/find/

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Click on the above links to find out how to reach your elected official. Then simply write them an e-mail, a letter or call and leave them a message. Let them know that you, the person that votes, supports additional funding for Alzheimer’s Research. Ask them to Co-sponsor the HOPE for Alzheimer’s Act.

Seriously, this will take you less than 5 or 10 minutes. Then follow up with them a month or so later.

Find out more about the HOPE for Alzheimer’s Act  and find a way to make it even easier to contact your representative.

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 (3)

Tell Me Your Secrets

 

Jim and I at a Walk to End Alzheimer's Event in Oct. 2012

Jim and I at a Walk to End Alzheimer’s Event in Oct. 2012

There is an element of becoming part of the Alzheimer’s family that no one really seems to talk about. Specifically Younger Onset Alzheimer’s.

When and How to tell people.

You might think it would be a no brainer (no pun intended) but it is complex and tricky and a lot to wrestle with while figuring out what is happening to your family.

As we were patiently waiting for test result after test result to come back, we were unsure what the final outcome would be; stroke, high blood pressure, syphilis, depression, tumor. There were a lot of ailments that could cause the symptoms Jim was experiencing. Each test that came back negative, put us one step closer to a conclusion of Younger Onset Alzheimer’s.  You are just waiting to find out what is wrong and what the game plan will be. In the meantime, you are needing to talk to someone. There is this human desire to share.
Jim had specifically asked me not to discuss his ongoing medical dilemma with anyone. For me, that was extremely difficult. Not only am I a chatterbox, but I am a sharer as well. Trying to not discuss what was happening for over 2 years was a very, very difficult test of self control. I failed. Miserably. I talked to my parents and some close, trusted friends.

At what point do you tell a close friend? At what point do you tell a neighbor you see in passing? When do you need to include teachers, co-workers, casual acquaintances, coaches, old friends you only stay in touch with a couple of times a year, relatives, distant relatives, babysitters….. EVERYONE you deal with on a daily, weekly or monthly basis becomes a question of  when should we tell them? How should we tell them? Why tell them now if you don’t really know what it is? Why tell them if it is going to be a process that will encompass years of our lives?

The ongoing saga of trying to understand and comprehend what is happening becomes eclipsed at times with do they know? Should we tell them? Why do we need to tell them?

You don’t want to seem like a person that is just looking for sympathy or attention. I never like telling anyone in front of the kids. A person’s natural reaction is so raw and emotional and heartfelt. It is a source of comfort, but it is also something you don’t want your children to see time and time again. I can’t tell you how many people we have told and they look at us and say, “but he is so young and doesn’t look like anything is wrong.” or the best reaction, “I am so sorry. You have got such a long and awful road ahead of you. I don’t envy you and I am sorry it is happening to you.” What do you say to that?

After a while, it can, at times, seem like it is too late to tell someone. How do you come back to a co-worker,  friend or relative and tell them something you have been dealing with for years and try to explain why you didn’t tell them sooner? How do you reach out to a neighbor you see everyday in the front lawn and broach the subject? What words do you use to inform someone that you only see in front of your young children?

It is, most times, a completely awkward jumble of jargon.

I finally realized after discussing this with a good friend. I was really having a hard time wrapping my mind around Jim’s diagnosis, how to tell the kids, how to deal with what was coming and I was talking to her about figuring out what to say to people and if I should.

She very quickly replied to me, “of course your friends and neighbors want to know. They care deeply about you and Jim and your kids. They want to help. They will be upset too, just like you would be upset if this was happening to me.”

BAMMM. There it was. Of course I would want to know if the shoe was on the other foot. Of course I would be sad and upset and want to do something to help. Even if it was going to be a long haul. I just hadn’t realized while wallowing in my own sorrow and self-absorption that learning of our plight would affect those around us deeply. This made me much more aware of the feelings of our loved ones.  It gave me strength and courage to start talking more openly about what was going on.

Once Jim lost his job, we sat and had a long talk. We decided to move forward with coming out publicly with Jim’s malady. We agreed trying to raise awareness and bring attention to Younger Onset Alzheimer’s Disease was important for our family. It was important for our kids to know we cared enough about them to help bring change to all facets of this horrible disease. What a freeing decision and what a difference that has made. It had really been weighing heavily on me to keep it all quiet and inside. At this point, there were only a handful of friends and close family members that knew. It was a secret that was torturous to keep. Our story became everyone’s story. We know that we are making a difference. We know that there are many others that are going through these same struggles.  We speak for them.

There are still times that someone hasn’t heard or doesn’t know. It is sticky to try to tell them in front of Jim. If I can, I try to let people know without him there. It seems more dignified. That is just it; Do people with cancer or heart attacks or strokes have to bring it up separately?  Why does there seem to be so much stigma?

Is it because there isn’t a cure? Is it because the outcome is the same for every person that has it? Is it because it isn’t a physical disease, but a mental one? Is it because it is such a long, drawn out disease? Why can someone proudly wear a shirt that says “Breast Cancer Survivor” but you wouldn’t be caught in a shirt that says “Afflicted with Alzheimer’s”? Believe me, there are times when we are out that I think one of those shirts would work very well.

It takes its toll on us. But I have come to realize that it also takes its toll on our family, our close friends and all of those that have loved us through the years. They share this journey and feel heartache too.

Not that long ago, I was discussing our situation with a pretty good friend. A very smart guy. He was just so confused and frustrated.

“I just spoke with Jim the other day and he seemed fine.”

“Yes, you are right. There are lots of times he seems ok, but his short term memory is very bad.”

“Are you sure the doctor got it right? Are you sure that he doesn’t have something else?”

I didn’t realize it during our conversation. I took it as an insult; like I was making up things that were wrong with Jim. But as I write this very blog it has whacked my heart. I know. I know now that this intelligent man was groping for hope, just as I have been for the past 4 years. He is a friend that cares and doesn’t want to see Jim succumb to what has been promised to us.

Don’t keep it inside. Share your feelings and let others know they aren’t alone and that you care too. It helps so much.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (16)

I Got a Feeling

 

EarlyAlzheimers_7

Jim and Brad August 2012

Do you know that feeling of waking up in the morning, realizing you are starting a new day, coming out of your slumber and it hits you?   You remember; you made an ass out of yourself the night before at a party; you broke up with your girlfriend or boyfriend; you and your spouse got into a HUGE argument; someone you care about has passed away; your child is sick; you are months behind on your mortgage payment. Whatever it is that gives you that dropping gut check feeling once you remember.

That happened today. Actually, that feeling is with me just about 24/7.

Every time Jim shows signs of declining, I get that unmistakable sinking feeling.

Today the news mistakenly announced that someone had been arrested for the bombing in Boston. Against my better judgment, I told Jim, “They have arrested someone.”

“For what.”

“What do you think?”

“I don’t know.”

“For the bombing.”

Blank stare. I know I just shouldn’t have said anything.

“Do you have any idea what I am referring to?”

“Not really.”

“Boston?”

Nothing.

“The marathon?”

“Yeah, I think I might have an idea. I think I might have heard something about that. I don’t watch much news.”

We had discussed it for the past two days. Remember? My parents were there and it has been everywhere.

I love Jim. I love him so very much. But I carry this sinking, gut wrenching feeling around with me permanently now and it sometimes makes that love seem so far away and long ago and hard. Hard to feel. Hard to remember. Hard to show.

I often wonder if Jim feels this too. I have asked him, but most of the time it doesn’t seem to phase him. I think it does.

I am still heartbroken for those that are struggling to overcome what happened in Boston. I hope the tormented feeling they are waking up to will subside in time.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have No Comments

Time to Love

Moon Rising in Yellowstone

Tonight, as I tucked my sweet, soft, warm Brad to bed, I couldn’t help but think that there was someone in the Boston area that would not be tucking their same sweet, soft, warm son to bed. Ever. Again.

It made me hug him even longer. It brought tears to my eyes and cheeks.

I always feel surrounded by death. I am constantly aware of the fact my husband has a disease with no cure and he is dying.  It is a death that is very slow and gives us a long time to say goodbye and prepare for this painful act. If you can prepare for such a thing.

Sometimes there are sudden deaths that make you stop and appreciate your own life a little more. Today, in Boston, that has happened.

My parents are visiting Boston. They were not very far from this cowardice act. They were leaving Fenway Park and trying to catch the Charlie. I frantically called them after hearing the news and about an hour later reached them.  They are ok. I knew they were, but I needed to hear their voices. Something tells me I was far from alone in this today.

I often wonder if maybe I will die before Jim. The rate for caregivers to pass before the person they are tending is very high. So I wonder about this. Then I wonder if I will die before my kids. Or if one or both kids will die before me. Then I wonder about my parents. The thought of losing any of them chokes me up and makes me cry. I think I cry a lot. Or it seems so when I am writing this blog. As I just mentioned, I always feel surrounded by death.  Do others feel this way? Or is it just me?

Not too long ago, Brad and I were driving down the road and he asked me what was going to happen when Daddy dies. Just out of the blue. At first I wasn’t sure what he was asking so I told him that it would be a long time from now and that we would be ok.

That wasn’t what he was asking. He wanted to know how I was going to be able to take care of him and Frances and how I would be able to work and take them to their activities and be there with them. I was a little shocked that he had put so much thought into this. For a nine year old, he is pretty observant.  Obviously it had been on his mind for a while.

As a parent, you want to protect your children. You want to teach them to find the good in situations. During that conversation with Brad, I reminded him how lucky we were to know what was wrong with Daddy and it gives us time to tell him goodbye. We are so fortunate to have time to plan and to appreciate being together and to be able to spend even more time with Daddy. We have friends that have lost parents suddenly and I pointed out to him how they didn’t get this blessed opportunity.

While I am thinking of the families of those lost today so suddenly and in a place that was full of celebration and accomplishment, I again realize how lucky we are. I am also having a hard time finding the good in this situation. We have time. Time to hug and touch and remind each other how much we love each other.

Thank you for this time. Thank you for this love. Thank you for this life that can be so fleeting.

 

posted by Karen in Uncategorized and have Comment (1)

Get out a map

Jim and I enjoying Beaufort, SC June 2009

Jim and I enjoying Beaufort, SC June 2009

The defining moment happened what seems like a lifetime ago. I can still feel the  complete loss of breathe and how my mind completely started shutting down while my emotions took over without  ability to control them. I escaped into a fog that I am not sure has lifted yet. I am not sure it ever will.

Jim and I had just visited Beaufort, SC. We had a wonderful trip sans kids.    We meandered along the beautiful coast of South Carolina, making stops along the way, in no hurry. We arrived in Beaufort after travelling through Charleston (that is important to remember). For those of you not familiar with the East Coast, you might want to review your Southeastern US geography.

Two Suns Bed and Breakfast

Two Suns Bed and Breakfast

We, well I , ate a lot of shrimp and grits.  We had a wonderful time staying at a local bed and breakfast. We did the historical tour, drove out to a beach looking for sea turtles and just relaxed together. That weekend was one of those weekends marriages need but seldom get. It was the last long weekend Jim and I would take together before I realized that my husband was never going to be the same.  Before I realized that I was never going to be the same.

I was working part time for the Leukemia and Lymphoma Society. Jim was working as a government contractor, on the road 1 – 2 weeks a month. The kids were 5 and 8. It was June 2009.

I was sitting at my desk and Jim called. He had made it to Savannah, GA for his latest work trip.

“Guess what I am looking at right now from my hotel balcony.”

“Ummm, I don’t know. A really cool tree or house?”

“No, that bridge we went over on our trip.”

Silence.

“What bridge? The one with all the people jogging and walking across it?”

“Yeah.”

“Aren’t you in Savannah?”

“Yes.”

“Then you can’t be looking at that bridge. That bridge was in Charleston. You are in Savannah.”

“No, I am standing here looking at the bridge. I can see it.”

“Jim, you cannot see that bridge if you are in Georgia.  We NEVER made it that far.  We were in South Carolina and never went to Savannah.  We talked about it, but never went. “

“I am telling you, I am looking at the bridge we crossed.”

“Jim, listen to me. I have NEVER been to Savannah. I have always wanted to go, but I have never been. I would remember if we had just been there last week!”

“I can see that bridge. It is the same one we went over, it looks the same.”

The conversation went like this, where we literally argued for about 3 or 4 full minutes.

Argued. I couldn’t believe he had looked at that bridge, thought to call me, dialed the number and we had the whole conversation without him once realizing that South Carolina is North of Georgia. He was in Georgia and it was impossible for him to be staring at the bridge we crossed in Charleston, South Carolina. During that entire thought process it had not occurred to him he was mistaken.

I hung up the phone and sobbed. I didn’t know exactly what was wrong. There already been some other red flags that had shown themselves to me during the previous months.  But this was it. I knew.

 I had to leave work early. I couldn’t even tell my co-workers where I was going or what was wrong. I just cried and left. What could I say? “My husband is in Georgia but is thinking he is in South Carolina?”

When Jim returned from his trip, I got out a map and we discussed this again, much calmer. We both agreed he needed to see a doctor.  Something was wrong.

And our journey began….

 

Pelicans flying over us in Beaufort

 

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)

I am pulling

 

“If you feel lost, disappointed, hesitant, or weak, return to yourself, to who you are, here and now and when you get there, you will discover yourself, like a lotus flower in full bloom, even in a muddy pond, beautiful and strong.”

Masaru Emoto, The Secret Life of Water

Lotus

I really want to write something upbeat and positive.  I can’t. I don’t feel it. I am not able to wrap my brain around the beautiful sunshine and flowers that surround us now that Spring has finally sprung.

I have a stack of bills sitting on my desk.  I have a house that needs cleaning.  I have a yard that needs tending. I just don’t have the energy or the gumption.

I suppose many would suggest depression would be the culprit for my bleak mood. I think it is of my own root.  Last night I cracked and yelled at both kids and Jim. I said things I am very regretful for. Mainly to Jim.

The kids have slacked off on keeping up with their chores.  Brad just wants to go outside and play.  Frances just wants to daydream and make up lists. They just want to be kids.

Jim simply focuses on his one thing he is doing at that very moment and walks around the house trying to…..well, I am not really sure what he is trying to do most of the time. I am not sure he does either.

I am trying to work full time, keep up the house, the bills, the schedules, dinners, laundry, and many other life hurdles that encompass my days. Sometimes people say to me “I don’t know how you do it.” Well, right now I don’t feel like I am.

I snapped. I know I am not the only parent who has done this.  I know I am not the only care partner who has done this. But I did. I regret it. I can’t take it back.

Fortunately, I got a laugh today when a friend unexpectedly stopped by and I told her a bit of what happened. In her beautiful, witty way she told me, “oh when I do that, my kids can see it coming and they are like ‘ here she goes again.’ They are just trying to stay clear and out of the way.” Everyone needs a friend that lets you know you aren’t alone in your faults.

Today when I apologized to Jim, he simply said “that’s ok.  I deserved it.”

No, he doesn’t.  He doesn’t deserve me yelling at him because he is driving me insane.  It isn’t his fault he hasn’t asked how we are paying our tax bill. Or what happened at the meeting about our windows. He can’t help that he doesn’t enforce the rules with the kids. It isn’t his doing when I feel like I am being pulled in 15 different directions and life is hurtling towards me at what seems neck breaking speed.

Life can be so sweet and on a dime turn into something bitter and venomous. It is when these moments of looking into the mirror hurt that I am forced to pull really hard. I have to pull myself out of that dark place that keeps me from seeing the bigger picture. The darkness that keeps me from being thankful for the precious love I have and the gifts I have been given. I am a Mom. I have two wonderful children that need me to pull harder.

I am trying. I am pulling.

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

Co-Pilot Dreams

 

Mother's Day, Chincoteague. 2011

Mother’s Day, Chincoteague. 2011

I just celebrated a birthday recently. Not long after Christmas, not long before Valentine’s. I have been spoiled and blessed with a husband that always put a lot of thought and effort into gifts. He was so thoughtful and I was so lucky. I was the recipient of some great surprises for many holidays. One year he surprised me with a skydiving jump. Then there was the beautiful dress he purchased on a business trip. Our first Valentine’s Day, I received my engagement ring…. I always tease him he still owes me a Valentine’s gift because an engagement ring doesn’t count. Now, at this point, I don’t care. I am grateful for just being his bride.

Two years ago I had no gifts or cards for Mother’s Day.  I know I am supposed to say that is OK. I know you love me and appreciate me as your Mother and I don’t mind. But if I am being honest, I was pissed and hurt. So Christmas of that year, I thought I would nip that in the bud. Jim and I had been in Bethesda, MD visiting the NIH for his diagnostic trials and we went shopping at a fabulous store. Just the two of us. I purchased workout attire and handed him the bag and told him that would be my Christmas gifts. I made sure when we got home they were put with his stuff. I made sure I reminded him before we left for Christmas at my parents.  Not only did I not have anything from him, he had completely been unable to plan ahead for stocking stuff too.

Now the kids are older.  They do a good job of reminding him and making sure he takes them to pick out something.

I don’t think I will be receiving any more jewelry or surprises from him. The definitiveness of that statement really makes me sad. Not because I want to be lavished with jewels. Because it is the end of part of our marriage. When you go through struggles in a marriage, whether it be lack of funds or rough patches in intimacy, you always know better times are ahead. Maybe you stroll through the mall and see something fancy that you would really like one day. You know practically, it ain’t happening any time soon. BUT, you can dream. You can tell yourself that one day, things will be better and when they are, you will get that beautiful ring or piece of furniture or whatever it is that has caught your eye. Maybe it is a trip to somewhere exotic. Maybe it is re-doing the kitchen or the bathroom. Maybe it is a new car or nicer home. Whatever it is, you are in it together; planning, dreaming, saving. Working toward a mutual goal that will eventually happen.
Alzheimer’s Disease changes personalities. Sense of time. Sense of planning. Sense of empathy. Sense of urgency. They sort of just walk (or shuffle) through life at the same pace and nothing seems to bother them. Maybe it bothers some of them. I have  some friends, who are caregivers, tell me their spouses get frustrated and angry when they can’t remember something. I am so fortunate. Jim just seems to take it all with a grain of salt. He doesn’t show anger or frustration. I do enough of that for the both of us. Maybe I would like it if he did show that he was aware of what is going on; the changes that have happened in our family. But, the saying says be careful what you wish for for a reason. What I really wish is for my husband to return to me. To see that smile and hear that laugh. To feel his touch and know that we are connected souls again. I miss HIM. I miss his mind. I miss him everytime I have to plan our family’s lives…. what is for dinner?  what movie will we watch?  how will we pay for new windows or the tax bill?   how are we going to discipline the kids?

You can choose to sit around feeling sorry for yourself or you can try to keep your future bright and full of possibilities. I choose the later. So what if he doesn’t help with birthdays? So what if he fails to notice we have up no Christmas decorations? So what if he doesn’t understand we are living paycheck to paycheck; unable to save for fixing up the house or taking vacations or planning for the kids college? I still have him. I still have part of him. He may not be the same man I married, but he is still so much better than I could have ended up with. He is so much better than many men. He loves me. He loves our children. He tries his best every day, without complaining. He leaves that for me. He is still a beautiful, loving, caring dad. And I am still so very lucky I found him.

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

Sneaking up

Jim and Brad, 2011

Jim and Brad, 2011

Ugghhh.  What a night.

It was one of those that sneak up on you.  Sometimes the chaos blindsides you.

I don’t want to get into minute details about the frustrations of finding out Brad and his friend got treats from the ice cream truck:  it was a debate between Brad and Jim on whether or not Brad asked first.  Who should I believe? I was at work and had no idea who to believe but it saddens me to realize I was leaning towards Brad.

Then Jim was having an off night; forgetting conversations and various frustrating trials throughout the evening.

I went for a jog with Frances and then a bike ride with Brad to try to put some distance between myself and anything that would cause me to lose my temper, which I am not pleased to say still happened.

The worst part was going to tell Brad good night after he was in bed. I could tell he had been crying. So I prodded.  He told me. He was crying because of D-A-D. I had to catch myself. This little energizer bunny had a huge smile on his face as he was telling me he was just crying in bed because his Dad is going to D-E-I-D. He was so uncomfortable talking about it, he was trying to smile and joke as he was telling me.

Dear Lord. Then he dropped the bomb. He told me he cries every night.

How did I not know this?

What do you say to your nine year old when their Dad is dying, but not tomorrow or the next week or next month or next year?  Wait.  That could be any of us.  My Dad is 72 and has a greater chance of dying before Jim does. But my Dad seems so healthy and doesn’t have a disease (as Brad said tonight) that we know of. Jim seems to be slipping away from us one split molecule at a time. Research and articles don’t give you a time frame for Alzheimer’s Disease, anywhere from 5 – 10 – 15 years.  Each case is different. Some say Early Onset is more aggressive and quicker.  Some say that isn’t true.

I get so wrapped up in day to day life. Worrying about bills and work and keeping up the house and keeping up with schedules. I sometimes forget that the kids are aware of what is happening and it really bothers them.  They don’t just come out and talk about it. It sneaks up on you.

Jim fixes their breakfasts.  He fixes their lunches. He takes Brad to school. He picks him up from school. He stays after to let him play with his friends. Jim plays ball with both kids.  Jim takes them to practice and lessons and helps them clean their rooms and plays games and puts puzzles together and helps with Brad’s baseball team and goes to Cub Scouts with him. He basically does everything a stay at home parent normally does. He is always there with them.

It must be terrifying for the kids to think of him not being there one day. We all know this is coming someday with our parents. But we usually think we have a long time. Do we? None of us know. But then we do, but we don’t. I’m confused, I can’t imagine how a 12 and 9 year old can deal with the concept. I need to work on this.  Along with everything else on my list.

I need something positive to sneak up on us.  It doesn’t always have to be something negative, right?OLYMPUS DIGITAL CAMERA

posted by Karen in Uncategorized and have Comment (1)