Archive for May, 2013

Anger Issues

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Jim saved me. From myself. From bad choices of jobs and men and friends. He saved me on so many levels. Now I want to save him and I can’t. I can’t stop this descent our family is on. I desperately want to save him. I want to save us. And I haven’t figured out how.

Instead, I get angry. Sometimes at him. I get angry that he hasn’t planned better. I get angry our children won’t have him much longer. I get angry that I will be alone and have to start my life over without the one person that knows how to save me from myself.

I get angry and I now realize the anger comes from deep rooted scaredness (can you believe that word isn’t in the dictionary?). I am scared I won’t have the money to take care of him and the kids. I am angry he didn’t plan that better. I am scared our children have inherited this God awful disease. I am angry he didn’t tell me before we were married or before we had children that this could happen. I am scared I will end up alone and bitter. I am angry he leaves me a little more each day when I need him more than ever.  I need him to save me from all of this and he can’t. For the first time in our relationship he is failing me. And I am failing him because I get angry and I can’t save him.

You grow up learning that if you go to the doctor, follow orders and take your medicine, that you will be healed.

Sometimes a terrible disease like cancer comes along and you must fight harder than you would with an average cold or infection. You take more orders and wait longer. But you have hope that the doctor’s orders and the medicine will work. Maybe a surgery will be the end all. You will be ok and be able to go back to the life you lead before the awful day you received the news.

As a child you are given vaccines that can keep you from getting sick. It helps you feel invincible and safe.

Once you figure out that it is Alzheimer’s Disease you are dealing with, you are at a dead end. No hope. No vaccines. No wait and sees. There are few drugs available to try to stave off the symptoms for a while.  You are told as you are being handed the prescription that the outcome will be the same as if you weren’t taking them at all. It goes against everything you have believed your whole life. It really takes a long time to sink in. I am not sure it has for me. On one level it has, but on many it hasn’t. How do you grasp that there is NOTHING to take that will heal your mind?

We have read many articles about different things that help: coconut oil, resveratrol, CoQ10, Vitamin B12, Green Tea, Black Tea, no sugar, more sugar, blueberries, acai berries, fish oil, folic acid, wine, no wine, no caffeine, yes, caffeine….on and on. Every day there is a new article with a new claim of a new study that promises you hope. That promises you a small glimmer of something to hold on tight to as you lie in bed trying to figure out what the Hell you are going to do. It is enough to drive a person insane if the fact they were already losing their mind wasn’t the issue.

Yes, I get angry. There are a lot of things that give me the right to be angry. It doesn’t mean I want to be angry and it doesn’t mean I will stay angry. It doesn’t even mean I am always angry. But I have my moments. Thankfully we have two awesome kids that keep me from dragging out my angry moments. They also help me get out of bed each morning and give me a million reasons to smile each day.

We have gotten word that the NIH wants to follow up with Jim for the diagnostic tests they ran on him a couple of years ago. So we will go. But these are not clinical trials. We are still searching for the right magic bullet. It is exhausting. I need my magic fairy godmother to swoop in and hand us that magical little flower that contains that magical little cure that will not only change our lives, but millions of lives around the world.

Have you contacted your representative yet?

I need a chill pill and spending all day tomorrow at the ball fields sounds like something that will help. So, that is where we are spending the weekend. Watching softball and baseball games and trying to forget the anger and the reason for the anger.

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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)

Slip Sliding Away

Visiting Arlington National Cemetery

Visiting Arlington National Cemetery, April 2013

This morning it was back to the grind after a wonderful long weekend celebrating Memorial Day with friends and a little bit of family as well. It was my Grandmother’s 92nd birthday and we were able to attend her birthday celebration. It was so good seeing family that we don’t get to see very often.We ran a 5K run together as a family (Frances beat us all).

Frances and Brad after the 5K run.

Frances and Brad after the 5K run.

We also got to catch up with some friends we hadn’t seen in a while and we also got to hang out with some good friends that we cherish in our daily lives. So all in all, a good weekend.

I could tell when Jim first got up this morning that he was a little tired, a little off.  I started getting ready for work and he went downstairs to start his daily routine of fixing the kids breakfast and while they are eating, fixing their lunches.

I came down shortly after and he disappeared upstairs. At this point, I am technically on the clock for work, so I am talking to them as I gather my work stuff. While I am asking them if they have everything for school, it comes to light that there are no lunches or water bottles made. It is time for Frances to be walking out the door to catch the bus and I am supposed to be getting ready for my daily phone call from the office.

Quickly, Brad, Frances and I gather in the kitchen and work as a team. I made the sandwiches, Frances got the water bottles and chips, Brad got the carrots. In less than 5 minutes we had the lunches made and packed up and we were now really ready to start the day. Nothing was said to Jim about not having them done. He came down stairs about the time we were finishing up and didn’t say anything. I couldn’t quite tell if he recognized what we were doing and that he typically is the one undertaking this morning task. All of this is bittersweet.

Bitter because he didn’t do them and didn’t seem to understand or realize that he didn’t. Sweet because I caught a glimpse of the team the kids and I will make; taking care of him and ourselves and our lives. They were great. Didn’t complain, just jumped into action and did their parts.

To a person reading this who hasn’t been affected by someone with Alzheimer’s, it might seem like a trivial task that we ended up having take on unexpectedly. No big deal. To us, the ones watching a loved one slowly, very slowly slip away, this was a slip. This was a daily task that Jim has done since January of 2012. Today was a day that will blend into others, eventually being forgotten, but for a moment, today was another turning point. He might remember tomorrow to do the lunches and he might not. I will have to make sure I am checking behind him. I don’t want to come barging in and take over his morning rituals. It is hard enough on him to not be able to do many of the tasks he did before. As a man, a very proud man, this is extremely hard for him.

One night he was emptying the dishwasher and he was in a rare mood of feeling sorry for himself. This happens about every 7 or 8 months for Jim. Very rare. As our conversation was progressing, he made a statement that really struck home, “ All I am good for now is laundry, dishes and housework.” What could I say? I reassured him that wasn’t true, he was still able to do many things I couldn’t and that he was still doing a lot that helps our family. I gave him the example that for many years that was my job around here and that he had always assured me how important it was. But deep down we both knew he was right. He is no longer part of the “working society”. He is no longer part of the daily commute, the water cooler chats, the lunches with colleagues, the business trips and deadlines,the contribution to society and all of the things that those of us who are working take for granted.

Jim is living in between; He remembers, knows and understands what is happening and who he was. He is not yet at the point he doesn’t remember his jobs and co-workers and being that person. But he also has a bit of a fog and aloofness that keeps him from being able to rejoin that culture again.

I hate it for him. I try to remind him often how much we love him and that we are ok. But, he knows. He knows that things are different and will always be different.

I wish I could just make all of this go away.

Jim, Brad and Frances at Arlington National Cemetery  April 2013.

Jim, Brad and Frances at Arlington National Cemetery April 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 (11)

My Happy List

Mystery flowers left on our front porch last year......

Mystery flowers left on our front porch last year……

I started writing a piece a few weeks ago about how angry I was. I will still publish that piece, but right now, I am just not feeling it. I am feeling new and exciting things on the horizon. So, I started doing just the opposite. I started a list of what makes me happy. Wow! I was surprised at how many things, many of them simple, that really make me happy. I don’t mean just put a smile on my face. I mean the kind of happy you feel inside; the kind of happy that makes you love your life and like nothing can bring you down. The feeling that all is right in the world.

After the devastation in Oklahoma and other parts of the Midwest this past week, I thought it would be a much better idea to share something a little more on the sunny side.  As I was cleaning the bathrooms and kitchen floor this morning I thought of those that have no bathroom or kitchen floor to clean and how lucky I was, even if I wasn’t too happy about the actual task.

I would like to suggest you take a few moments and really think about what makes you happy. You might be surprised by your own list. Maybe you can use that list to make sure you integrate your HAPPY into your everyday life.

Things that make me HAPPY:

  • Hearing my kids laugh and carry on a conversation together. Especially when they don’t know I can hear them.

 

  • Hearing my 9 year old son rapping in the shower.

 

  • Hearing my 12 year old daughter belt out tunes in the shower.

 

  • Listening to the rain while sitting on a screened in porch or while lying in bed.

 

  • Smelling the earth after a rain.

 

  • Feeling the warm breeze off of the ocean and feeling the salt spray on my face.

 

  • Jogging in the rain.

 

  • Biking at night with a full moon, a slight breeze and clean air. Even happier is when I get to do it with a friend.

 

  • Hearing Jim tell me he loves me. And that I am beautiful. This used to happen everyday and I took it for granted.

 

  • Visiting with my parents and getting to know them as friends, not just as parents.

 

  • Listening to friends chit chat and just be. Normal talk.  Hanging with good friends can carry me through a really bad day.

 

  • Visiting a place I have never been before.

 

  • Making a difference to someone.  This blog has really helped me feel like I am accomplishing this on a daily basis. I aim to do more of this….

 

  • Helping someone to see something in a different perspective that changes their life. This sometimes happens after a good heart to heart.

 

  • Having a clean house. Well, I can’t say this happens often, which might be the reason it makes me so happy.

 

  • Not having to decide what is for dinner. Or what we are watching on TV. Or what we are doing. Or, well you get the idea.

 

  • Not needing to get up first thing in the morning and having the kids come into bed and snuggle with me. LOVE.

 

  • Having a great, candid, open conversation with my kids about their life and who they are as a person. These don’t happen enough.

 

  • Seeing my children happy.

 

  • Seeing my husband happy.

 

  • Enjoying the sunshine after a cloudy, rainy, snowy, cold day.

 

  • Helping a perfect stranger and then not needing to tell anyone about it.

 

  • Reading a really good book that I just can’t put down and realizing I haven’t forgotten to fix dinner or take the kids to practice.

 

  • Realizing that I matter to others and accepting their love and care. This is an ongoing process for me. It is harder than you think.

 

  • Hanging with just Jim; watching a good movie and enjoying together time. These don’t happen often enough.

 

  • Watching my kids become their own person. This also would fall under the proud category.

 

  • Helping a friend with a problem and believing I contributed  in some small way.

 

  • Jogging or walking the Noland Trail. I am very happy as long as I don’t see a snake, then there is no happy.

 

  • Reconnecting with an old friend and realizing they have missed me too.

 

  • Organizing my chaotic house. This is a process that has never been done. But it will make me happy when and if it ever happens. In my mind it is doing to happen almost every day.

 

  • Having a husband that shares my hopes and dreams for our children and our future. Although Alzheimer’s Disease has taken a lot of this away from us, I know that I have a partner in Jim that supports my efforts and our children’s efforts.

 

  • Giving a bouquet of homegrown flowers to a friend or teacher. I love flowers. But not the silk ones.

 

  • Riding in the car (ok, van) with a great song on the radio that I know the words to and belting it out. Even better with the windows down and the sun shining. I refrain from this often since I drive a lot with fellow drivers in close proximity. 

 

  • Listening to the birds chirp and chatter. 

 

  • Getting through a list of things to do: I don’t know if it makes me happy or feel accomplished, but either way, it is on this list.

 

  • Becoming enthralled by a great song and playing it over and over until I learn all the words.

 

  • Feeling safe in Jim’s arms. 

 

 

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)

Two down….

 

Bike ride break overlooking the wild ponies. May 2013.

Bike ride break overlooking the wild ponies. May 2013.

We can mark #5 off  Jim’s bucket list. This past weekend we drove to Chincoteague and spent the night in one of our favorite places. We were able to get some bike rides in between the rain showers; even making it over to the beach.  We did skip our usual picnic lunch there this time due to the wind and chill in the air.

Yes, another bucket list item is done. I am trying to be happy about it, but just having to do the bucket list in the first place just really sucks.

We started going to Chincoteague every Mother’s Day when Brad was just a year old. Last year we missed going due to financial constraints and scheduling. This year Jim added it to his bucket list so we went the weekend after Mother’s Day.

What a great time we had just hanging out as a family. Seeing nature (we were able to see 3 elusive Delmarva Bushy Tail Squirrels in one ride), seeing the ponies, eating some great food and of course piddling through the stores.

A wonderful family owned inn.

A wonderful family owned inn.

For the past 6 times we have visited Chincoteague, we have stayed at the Refuge Inn. Love this place. Indoor pool, close to Assateague National Wildlife Refuge, great breakfast (free), awesome gift shop (knocked out some teachers’ gifts) and a corral of Chincoteague ponies on the property. We could see them from our room. They were kind enough to give us our bike rentals free!  Talk about awesome! Thank you Refuge Inn for helping our family make great memories again.

My second favorite store.

My second most favorite store in town.

Right across from the delicious bakery on Main Street is a really cute store that has lots of glass items and really unique stuff. We love browsing in this shop. The owners are really nice and usually remember us. A few years back I bought one of my favorite past purchases; a glass seahorse. I loved this seahorse. Every time I looked at it hanging over my kitchen sink it reminded me of our times in Chincoteague and it just gave me a nice fuzzy feeling. About 8 months ago, I was doing the dishes and realized the seahorse was gone. I asked Jim and he informed me he had broken it. I am not a materialistic person, but I was really upset this seahorse had been broken and no one had even thought to tell me. (actually this has happened quite a few times) It was something that has really been one of those things that bothers me more than it should. In the whole scheme of life and the whole scheme of my life, that glass seahorse was really not very important. But it was something that was special to me.

My new seahorse to go with my new normal.

My new seahorse to go with my new normal.

We made sure to make a beeline for the store and found the glass seahorses. They didn’t have the same exact one (they are handmade) but I found another that was just as nice.

It is back over my kitchen sink. I have faith that this one will last. The only problem is now when I look at this one, it reminds me of the other one and how upset I was and how I shouldn’t have been upset with Jim.

Why on God’s green earth can’t I just let it go? I have a NEW one. For all the tea in China, you would think that I could be happy with a perfectly good new one without trying to bring all that baggage from the broken one into the picture over and over.  I see this and realize I have to LET IT GO!!! Let it go and accept my new seahorse. Maybe I can convert it from being a reminder of  getting upset with Jim when I shouldn’t have, to a reminder of how special my life is and how I need to just let some things go.

Yes, I am sometimes human. I am not perfect. I expect too much of myself. I call this blog Confessions of an Alzheimer’s Wife for a reason. Because these thoughts, feelings and secrets are confessions to educate those of you NOT going through this less than desirable path of Alzheimer’s. And for those of you that are traveling this bumpy road, I write so you will understand you are not alone. You have many others that are thinking the same things as you, even though you aren’t allowed to say them out loud. Ok, maybe you can say them in your support group. I hope you are going to a support group and I hope you say those things out loud that you keep inside on a nightly basis. It feels good to let it out sometimes.

My most favorite store!

My most favorite store!

I love my life 90% of the time. I think that is pretty damn good. I have fantastic kids, I have a husband that is really amazing in the face of some pretty shitty circumstances. I mean, I got to go with these amazing people I share my life with,  that I adore, to a magical place that holds tremendous memories for us.

We are better off  than many other people. That is something to smile and be happy about. We are together. Our kids love us and each other and are happy. We have a lot to be thankful for and a lot to embrace and be joyous about.

Sometimes it is hard to see these things. We sometimes have to search really hard. When you look at what you have instead of what you don’t have or perhaps what you won’t have in the future, you can keep your happy with you.

Keep your happy. Let it shine, but don’t let it fly away.

Frances riding on Assateague.

Frances riding on Assateague.

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)

Give me until tomorrow….

 

The mother to be the night before...

The mother to be the night before…

I was determined to make my next post something upbeat, positive and glowing of smiles and happiness.

That will come tomorrow.

We are back from our wonderful trip to Chincoteague. We really did enjoy our family time and got back to nature.

Part of our getting back to nature came as a surprise this morning. Just outside of our sliding glass door was a mare in labor with a foal.

“Very cool. A great chance for the kids to learn something and see nature at work. Awesome!” I thought to myself.
Well, over an hour later, it was determined the foal wasn’t going to make it and neither was the mom. We had stood in the misty rain waiting with others in high expectations of seeing this beautiful start of life. Not to be. We were all so sad. It is hard to go from such high expectations and jubilee, to great sorrow and pain.

I felt like it was my fault. After all, I feel like I have this dark cloud following me most of the time. As a good friend recently told me, “Karen, you live under the tire of the karma bus.”

I am ashamed to admit I felt a sense of relief when I was told this was the 3rd foal they had lost this year (3 more were there in the corral, playful, frisky and cute as anything you could hope to see). I was just relieved that it really couldn’t possibly be my fault for the death of this horse and her unborn foal. How completely narcissistic can a person be?

For much of the morning, we were just sure we were getting ready to witness a miracle. We could see 2 hooves and part of the placebo working their way out. Nothing more ever showed itself to this hard world of ours. Life is sad. Life is hard. Life is a bummer many times.

I work everyday on pulling myself out of any kind of darkness I might be in and search high and low for my rays of sunshine and my glimmers of hope.

I find them everyday in Frances and Brad. I find them in good friends that somehow show up in the nick of time. I find them in my parents and my brother. I find them in my caring, loving and great husband, Jim.

Sometimes I have to look really hard, but if I look, I will find my hope and my loves and my reason for keeping on.

I am going to unwind tonight and I will post my happy, upbeat journal about our awesome time in Chincoteague tomorrow.

 

 

posted by Karen in Uncategorized and have Comments (3)

Inconsistencies Abound

 

On top of the Assateague Lighthouse, 2010

On top of the Assateague Lighthouse, 2010

Tonight I asked Jim how many years we have been married. At first he said he didn’t know, then answered, “13”.

“No. Guess again.”

“I don’t know.”

“What year were we married?”

“1997.”

“What year is it?”

“2013.”

“So, how many years is that?”

“I don’t know.”

“Ok. 97 – 2007 is how many?”

“10”

“How many from 2007 – 2013?”

“6”

“So, how many would that be?”

“I don’t know. I don’t remember.”

“It was 10. So how much would 10 plus 6 be?”

“16”

“Yep, you are right. We have been married 16 years.”

So goes a conversation with someone in the earliest of stages of Alzheimer’s Disease. Unless you live with someone day in and day out, you really could not comprehend the frustration at the inconsistencies.  Jim normally is a math wizard, and I feel compelled to try to keep his mind active.  Letting him know that he can still figure things out is important, hence the above conversation.

This morning Jim had to go give blood for some tests. We talked many times yesterday about this for a variety of reasons. I told him to put out his sheet with the tests listed and the prescription. As usual, about 6:30 a.m. this morning he got up and went downstairs to start his day. I could hear him. I was just about to hop in the shower when I remembered he was supposed to be fasting. Oh snap! (ok, I might have said something a little stronger than that, but for the sake of your eyes, I am refraining from putting the exact words used) I quickly ran downstairs to ask him if he had eaten anything.

“No, just a peanut butter pretzel.”

“Jim, you were supposed to be fasting.”

Ughhh. Another one of those moments…..anyone could have forgotten.  My “old Jim” probably wouldn’t have. BUT, I need to accept the “new Jim”. On top of that, I felt immense guilt that last night I hadn’t put out a note or two to remind him. I should have. I meant to. I didn’t. I was tired and I went walking with a friend and failed to be one step ahead. I forgot.

Luckily, Jim called the lab. They let him know he could come in this afternoon if he didn’t eat anything all day. So that is what he did. He must have been starving, but he didn’t complain and just kept on keeping on.

I love that man. He is such a good person and such an easy going guy. (Please be sure to remind me of this at a future date when I am having a hard time recalling this fact!)

We are moving on down on the bucket list and will be headed to Chincoteague tomorrow after Brad’s baseball game. We won’t be there too long, but hopefully long enough to get in a bike ride or two, visit some of the shops and bakery and relax as a family with no agenda in mind. I am really looking forward to getting away with the kids and Jim to a place that is sacred to us.  I am REALLY hoping I get a chance to visit one of my favorite all time stores; The Coffee Shop.

Riding bikes on Assateague 2009

Riding bikes on Assateague 2009

I have come to realize that these overnight trips take a lot more forethought and planning. I will need to go through not only my stuff, but Jim’s as well. Frances and Brad pack their own bags, with me just going over verbally what they should have in there.  I will also have to make sure we have the bug spray, sunscreen,snacks, money for the toll, beach towels, bike helmets and the camera and well, you get the idea.

I am sure for so many people, this is standard for each trip. But I have come to realize that I cannot just tell each family member to do something, I must go behind them and make sure it is done.  When you work full time and have a million things going on in your head, this is actually much more difficult than it sounds. Especially when you have gotten used to having a spouse that spoils you by being on top of these types of things. There is a slim chance he will be on top of things and be able to help load up the car. He might remember to put ice in the cooler instead of just the items that are supposed to stay cold.  He might be able to help load the items in the van in a manner he taught me when we were packing up for our drive across country after we were married. Then again, he might not.

Yes, the inconsistencies get you. You never know what each day will bring.

We had a our support group meeting this week. What a wonderful group of people. All of us seem to be at about the same point in this journey. Jim arrived before I did. He filled them in a little and told them what a good time we had in Boston and at the ball game.  He also told them the Red Sox won the game. When they told me this after we were split into our separate groups, it was another one of those punches to the gut. I just wasn’t expecting it. I almost started crying. I was able to hold it together because they were so supportive and could see the immediate disbelief and they completely understood the look I must have had on my face.

Yet, today we were talking to someone and Jim let them know that the Red Sox had lost the game. How does this disease work? One day they know something and the next they don’t and then the next day they know again?

Inconsistencies happen. Life happens.  It will be ok and we will be ok.

Lookout Chincoteague, here we come!

Brad on a beach in Assateague, 2011.

Brad on a beach in Assateague, 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 (7)

Who Am I? Part 2.

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All of my life I have worried about fitting in. I have craved friends. They have always been immensely important to me. I have chosen friends that have been good for me. I have chosen friends that were not so good for me. I have strived to be different, yet at the same time  “normal”.  While trying to be true to myself. It has at times been ridiculous, immature and wasteful. Just to make sure someone liked me.  It has caused me to treat my parents and family less than they deserved. It has caused me to miss out on things I shouldn’t have. It has caused me to treat myself less than I deserved.

Honestly, this has been a struggle for me for as long as I can remember.

Now, I am morphing and changing. I am not sure who I am anymore. I am someone while I am at work. Then I am someone at home. And someone else completely different with my friends. I don’t recognize this girl that is becoming self conscious in a crowd.  I sit alone in the evening and literally can’t figure out who I am anymore. It is becoming increasingly difficult to be “me” because I am just not sure who “me” is. I am being forced to create a new identity at the age of 43 and I must admit, I feel like I don’t have any control over the outcome. Not having any control over who you are becoming as a person isn’t just a weird feeling, it is a frightening one as well.  One thing that is becoming clear to me: I am terrified I will lose my friends because this seems to be a very common problem for caregivers. Yet surprisingly, I am ok with this possibility, even as I admit being so afraid. What, you may wonder, would cause me to change and grow as a person and suddenly be ok with missing out on the fun and friendships? Funny you should ask….

It is a lonely, long road when you suddenly are “different” from everyone else around you. At first you can pretend that nothing has changed and you can hide the fact that you aren’t the same. But eventually, slowly, it is the elephant in the party room. It raises its ugly head and shouts out to be heard and seen. You can’t ignore the desire to talk about it. You can’t hide the fact that Jim isn’t the same Jim. It can be a hard line not to cross back over once you decide you want to be true to yourself and not follow the pack.  Standing up for something you believe in usually means venturing down an unbeaten path that only those that are willing to accept your changes and endure a different “you”  will last through. For the first time in my life I have found something that actually keeps me from worrying about being invited to a party, if someone doesn’t like me or if I have offended them.

Part of my personality is not only yearning for friendship, but searching for my place in this world. I have always wanted to make a difference. I have dabbled in saving the earth. I have raised money for organizations. I have volunteered with a variety of groups; never quite finding the passionate feeling that would make me give all my time and energy. The one thing that I was willing to lose friends for or choose friends over if I had to has eluded me.

I have found my calling. I have found the thing that gets me excited and drives me to keep focused and pushes me to read more and do more. I have found the one thing that will allow me to keep pushing forward and striving to be part of something much bigger and more important than me or my circle of life. I have found something I believe in with all of my heart, soul and mind.

Alzheimer’s Disease. Finding a cure and changing the course of this disease.

I do not pretend to be an expert. We are in mile one of this marathon. I have a long way to go and it isn’t really something I am looking forward to pushing myself through.

But, I have heard MANY stories. I have cried my own tears and shared tears with others over their same heartbreak and frustrations as mine.

It is a sorority I wasn’t looking or hoping to join. They could come and revoke my membership card and I would be just fine. I don’t want to be part of this . I want to be the  girl that fits in and has friends over  and has no worries in the world. I want to sit around an evening fire and relax and not think or feel so much. Can I even remember what it felt like not to have this secret, twisted knot inside of me the entire time I carry on a conversation? I want to fall asleep with hope that tomorrow will be an even better day and that my life will be something I have a semblance of control over.

I don’t fit in anymore. I am not the same as others. I have a different life and a different purpose. I need to stop kicking and screaming and I need to start DOING!

Yes, it is hard to be different. It is lonely and it is scary to fight this battle.

I am strong. I am a woman that has a mission. If I can complete my mission, I will have helped not only my own children and grandchildren, but I will have made an impact on this world that will make a difference for all the generations to come. My destiny has become clear and it is much bigger than I.

That is worth giving up being one of the crowd and it is worth the lonely nights and lack of parties and trips and dinners and picnics.

I do not travel this road alone, but I travel it side by side with many others that have the same destination. We are just traveling in adjacent cars on the same path.

 

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

Who Am I? Part 1

 

December 2005.  One of my favorite family photos.

December 2005. One of my favorite family photos.

This is almost like a TWO part post. This post and the one that will be posted Tuesday are following the same story line.  I couldn’t quite edit them into the same story, yet they belong together. So, this is part 1. Thank you for reading and for sharing.

 

I don’t know who I am any more.  The person I am in my mind, doesn’t mesh with the person I am forced to act out each day.

The girl I was growing up has morphed into a responsible Woman.

I know ME, right?  I like to travel.  I like to be around friends and learn knew things and I LOVE my kids and showing them the world, watching them grow and become whatever it is they are becoming.

But, the me I am now isn’t who I have in my mind.  It isn’t who I used to be.  I am a person that is looked at with sorrow, with sadness, with complete sympathy.

NO.  I am not someone to feel sorry for. I am strong.  I am loved.  I have a warm home. I still have both my parents and my grandmother and my brother and my two beautiful children and friends and I am still alive, still thriving and moving forward. And I have a wonderful husband that loves me.

But I am changing.  I am learning and growing and taking on a role I never saw coming and never asked for.

I am still me, somewhere in there.  Just a new me.  Someone that is being defined by how she handles a situation that there are no statistics to compare to. It is like when you become a parent…everyone tells you your life will change. They tell you to appreciate the quiet time now and to get some sleep now and you know what they are saying is true. But you can’t possibly grasp what it really feels like until you hold that precious baby in your arms the first time. I know I need to appreciate the Jim I have now. But he isn’t the Jim I married. He isn’t the Jim of last year. I know one day I will wish for this Jim back, but it is really difficult to appreciate the place we are in at this very moment, even knowing what lies ahead of us.

There is no magic guidebook. Each case of Alzheimer’s seems to be different, just as each baby is different and the way you change as a person and the way you parent is different. You learn as you go along and you do the best you can.

Just like when you have kids, your priorities change.  Making the party or the club every Friday and Saturday night isn’t top of the list.  Doing laundry, grocery shopping, picking up the house and making sure everyone is fed takes over the list.

That is fine.  That is part of the deal.

I am not sure what my priorities are right now….I want to be the person I have to be and still be ME.  The fun loving, outgoing, smart, caring person that had time for everything and everyone.

Priorities are a bitch. Sometimes you just have to let some things go.  That includes friends.  That includes Me time.  That includes a dust bunny or two. It is ok.

Those things will not define me to my children.  How I take care of them and their father will define me in their eyes, and in the worlds’ eyes.

But sometimes, I just want to be the original me.  The one that managed to work, fix dinner, hang out with friends, get the house clean and still had time to watch a TV show or take in a movie. Sometimes I even weeded my yard and had beautiful flowers blooming this time of year.

Who am I and how did I get to this place?  How do you define yourself when the world considers you a care partner? I am not.  That is for other people, right?

I am called a care partner in the Alzheimer’s world.  Jim is still able to take care of himself so I am not a caretaker.  Aren’t we all care partners?  For our children?  For our parents?  For our friends?  I know I have a lot of care partners taking care of me while I take care of Jim and the kids.  I think it is a cycle in this world that not many people talk about.

I want to talk about it and thank those that take care of me.  And I want to thank those that take care of others.  This world would really suck if we didn’t have lots of care partners for all of us.

I am fully aware that I am in the process of becoming the person I was meant to be. It has taken a long time to get to this point and I am letting myself transform from one Karen to the next. I can’t say I haven’t gone into this without a little kicking and screaming, but I do think (I hope) I am finally accepting my new me. I hope this Karen has some good things up ahead.

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)

One down….

Just after a downpour outside of Fenway. May 2013

Just after a downpour outside of Fenway. May 2013

We can check off #  2 on Jim’s Bucket list . This past week we had a great time in Boston. I think Jim really enjoyed the Red Sox game and I think he enjoyed our time away without distractions of my work, the house, the kids and life in general.

It started off a little rocky. As we went through security at the airport Jim somehow managed to “lose” his wallet. He had it when we walked up to security, showed them his i.d. and then we went through the procedure of taking off his belt, our shoes, jackets, putting our carryon bags on the conveyor belt. No problem.

Then, as we are putting our things back in order, he can’t find his wallet. Not in his pockets, not in his jacket. He keeps trying to walk over to security to ask them where it is. I keep calling him back over to where our stuff is, asking him where he put it after showing them his i.d. This went on for a few minutes and I wanted to shout at the people staring at us, “Stop looking at us. He has Alzheimer’s Disease. Yes, I know he is young and doesn’t look like it. But he has it and now he has lost his wallet even though he had it on the other side of the gate.”

Finally, I look through his bag and there it is. Under some clothes and to the side. He must have gotten a little flustered being rushed through security and during the process of trying to multi task slipped his wallet into his bag. Multi tasking is no longer an option.

Deep breathes. We are on vacation….

The rest of the trip went well with just a few hiccups that don’t seem to bother me as much when the kids aren’t around. It doesn’t matter that he can’t figure out the hotel room light switch. It isn’t a big deal that he actually wondered out loud if the ball park food would be as expensive as the airport food. Who cares that he suggested we buy cereal and milk  to carry on the Charlie around Boston and back to our hotel for breakfast the next morning? (for the record, Jim eats cereal every morning, even if I fix something else)  I could focus on just Jim. No need to keep track of the kids, meals, schoolwork, chores, bills, practices and schedules. It was just the two of us riding the T and seeing some sites.

It was hard for me not to miss the “old Jim.” The Jim that would start a conversation. The Jim that would keep pace, not always seem to be a step or two behind, and help me figure out what we were doing and where we were going. The old Jim that would have a story to tell when we were sitting at dinner and the Jim that would be interested in seeing something specific. We would have to compromise. Go where he wanted to go AND where I wanted to go. For the most part we went where I wanted to go. I think that is one of those things that you wish for when you are married, but when you suddenly have a spouse that lets you make all the decisions, including what to see while on vacation, you think of the saying, “be careful what you wish for.”

We went to Quincy’s Market and Copley Square. We ventured to Boston Commons and ate at the Harbor, where I tried clam chowder for the first time. We made sure we arrived at Fenway Park in plenty of time. We walked around the entire facility. We got hot dogs. We took pictures. He got a pretzel. I got nachos and beer. We saw the Red Sox hit a grand slam. Unfortunately, that was about the only thing they did that game and they got beat terribly bad.

The infamous ball park frank...

The infamous ball park frank…

The stadium started clearing out by the 7th inning. Finally, we headed towards the seats behind home plate (we were out in right field). We tried to sneak past an usher and got caught. Wow. We were so close to the field and could see the players and boy, those seats are cushy! They even have TV’s in the backstop wall to watch. So, we stood just inside the entrance to the section behind home plate, just out of the area where the usher had ushered us away. I was on the phone with my Dad telling him what was going on and low and behold, the usher came back over and told us we could sit in the back row of that section. Awesome. We could see each pitch so clearly. It was such a different perspective and view. I was so grateful he had changed his mind so that Jim could really get a feel for the ballpark and the game before it was all over. I thanked him before we left. I am not sure what made him change his mind, as I saw him send many others away as we sat in those prized seats. Sometimes things just happen that are good and you just have to be thankful.

Jim watching warm ups.

Jim watching warm ups.

I am thankful we got something on Jim’s bucket list done. I am thankful that he was able to enjoy himself.

I am not thankful that we are working on Jim’s bucket list at all.

As I write this entry, I realize I need to change my seat. Just like we did in the stadium. I need to change my view and my perspective of what our family is going through.

Lately, I have really struggled with a lot of things. My job. Money. Schedules. Housework. Jim’s lack of interest or involvement in most things. Just trying to be “me” when I am not sure who that is anymore. This trip was a good perspective on enjoying our time together and focusing on the other bucket list items.

Next up: Chincoteague Island.

IMG_1287

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)

The Bucket List

Brad and Jim, Assateague, 2005

Brad and Jim, Assateague, 2005

Jim’s Bucket List

1. Go to all the States

Still needed: Alaska, Oregon, Minnesota, Hawaii, The Dakota without the President’s Head (yes, I know which one it is. I am quoting Jim’s list. FYI, He visited South Dakota about 6 years ago for work. He did know that fact up until this past year)

2.  Got to Red Sox game in Boston

3.  Live to see Frances and Brad graduate from High School

4.  Play sports again….

5.  Take the kids back to Chincoteague and ride bikes and go to the beach

6.  Help find a cure for Alzheimer’s

Jim and the kids playing on Assateague Beach, 2007.

Jim and the kids playing on Assateague Beach, 2007.

I would like to discuss this list.

First of all, I think it shows and tells a lot about my husband. He is simple. And I don’t mean simpleminded. I mean, it doesn’t take much to make him happy. Jim is the type of person who is content with what he has; he doesn’t need a lot of material things. His family is what is  important.  Jim has always been a hard, conscientious worker. His medals and promotions while he was in the Air Force show that.

A while back I asked Jim where he had always wanted to go that he had never been. I was thinking his answer would be somewhere warm and sunny (maybe that is what I was wanting…). No, his answer was Alaska. I asked him several more times (he seems to change his mind a lot more these days) and Alaska has been his go to place.

#1.  I am going to make part of this happen. Not sure how yet, but we are going to go to Alaska this year. I just don’t think that waiting for next year is the way to go on this one.  August is the month. We have decided against a cruise. None of us have been on a cruise and none of us really want to go on one. Plus, Jim (and me and the kids) wants to see Alaska. On a cruise ship you are lead to a lot of the tourist traps and don’t get off the beaten path. That is what we are going to do.                                                               Seeing all 50 states probably isn’t going to happen, but that is ok. If we get everything else done on the list (especially #6) then we have done a pretty good job.

#2 will be checked off by this time next week. My parents gave Jim a pair of tickets to see the Red Sox play at Fenway Park for his birthday. Jim literally cried when he opened the card with the tickets in there. I think that is all that is needed to be said.

#3- I just can’t write about this right now. That is too raw and too emotional a subject. I am sure I will discuss it further at some point and time with you. I hope #3 comes true for him too.

#4….we gave Jim a membership to a local tennis club for his birthday. He hasn’t been able to take advantage yet, but hopefully he will. There is a friend that is trying to get him to come play soccer, and we played golf this past Friday, which was our anniversary.  (We took first in our flight. Yeah for us!) I will need to discuss with you how the golf went, but this post is about his bucket list, not where he is in the progression of the disease. So, #4 is a continuous work in progress.

#5. This one gets me. Last year was the first year we were unable to go on our annual Chincoteague trip for Mother’s Day weekend since Brad was just a year old. We have such a great family time. We ride bikes around Assateague, see the ponies and other wildlife and visit quaint little shops, including a delicious bakery. We just have the best and most relaxing time. The kids have mentioned many times how much they missed  going this past year and have been asking if we are going to be able to go this year. It has been a favorite of ours ever since we started the tradition. I am going to make this happen too.

#6. That too is a work in progress. We are working hard to educate everyone on this great need.   We are educating and asking our representatives for help. Have you? We participate in a variety of campaigns to raise funds for research and programs for the Alzheimer’s Association. Will you be participating this year?

So, there is my husband’s bucket list. Have you ever filled one out? What would you want to do if you knew that time was an issue? For us, time is the issue, even though Jim will be with us much longer than his mind will be.

Jim playing volleyball at family camp, 2012.

Jim playing volleyball at family camp, 2012.

There are times I get cynical and think to myself  Why bother? He isn’t going to remember anyway. Why spend all that money and drain our savings if he won’t even know we went?

Frances and Brad. They will remember. We are creating memories for them to have of times with their Dad.

As Frances told me recently when we were discussing what to get Jim for his birthday, “I will know.”

I had been discussing with them what to get Jim and had suggested a Dairy Queen gift card so he could get his coveted ice cream whenever he wanted. She reminded me that is what she had given him for Christmas and for his birthday last year.

I am embarrassed to say that I told her, “That is ok. He probably won’t remember.” At the time I was trying to be a little lighthearted and funny. In retrospect, I didn’t do a very good job.

Once she shot back her answer, I was not only embarrassed and ashamed but infinitely  very proud of her. Sometimes I know I am doing something right.

Financially, we really can’t afford it. I am torn between saving for what is surely coming down the pike and at the same time wanting to help create these lasting snapshots with their father. Which is more important?  I am also trying to keep our lives as ordinary and normal as possible for as long as possible. UGGGHHHHH.

Who knows if I am making the right decisions now. I am sure there are times that I am not. I am also sure that there are times that I am.

Only time will tell. In the meantime, I have a list to start checking off….Lookout Boston, here we come!

We camped out one very windy night on Chincoteague in 2010.

We camped out one very windy night on Chincoteague in 2010.

 

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