Archive for May, 2014

Ups and Downs

Supporting Brad at the state competition. April 2014.

Supporting Brad at the state competition. April 2014.

It is time! Brad’s Odyssey of the Mind team is headed to Ames, Iowa to compete in the World competition. I am so, so lucky I was able to take off  work and go with him.. I always seem to spend more time with Frances for some reason or another and it makes me so happy to get to share this grand experience with him.

Of course a huge dilemma was leaving Frances and Jim for 6 days with no transportation. As luck would have it, my awesome nephew just finished his first year of college and was not only available, but willing to come stay with them and help. Again, our lives are blessed by those we have in it.

Another huge stressor is getting everything ready. I am in the process of fixing some sauce to have ready in the refrigerator. I will put dinner in the crock pot before we head to the airport. I have cleaned, shopped, asked friends to be on call and organized the schedule for the rest of the week. Naturally Frances has a softball tournament out of town while we are away and thankfully (again) some parents have stepped up to offer help however need be.

Tonight while I was trying to pack, I noticed some clothes that were in the dirty laundry earlier in the day now hung up in our room. I did 3 loads today so I was familiar with what still needed to be washed. There was a not washed linen skirt, all jacked up on a hangar dangling in the closet door space. So, I start investigating, which I have come to realize, albeit too late most of the time, that I should just stop doing. Yes, dirty clothes were put away with the clean clothes and wet towels were thrown on top of some of the clothes left in a basket and then another basket was put on top of a basket of clothes as well. Everything dealing with our laundry was completely awry.

Then to top off the day, I was putting groceries away and one of the shelves on the door of our fridge literally broke when I put something in it. I quickly emptied the contents while putting the rest of the food away and fixed dinner. It wasn’t until after dinner I opened the door and saw the empty shelf back in the fridge, waiting for someone else to put a bottle in it to only fall on the floor. And yes, Jim was standing right there when it broke in the first place. He had no recollection.

It has been that kind of day. My bicycle tires were flat and I couldn’t get the air pump to work to put air in them. We had windows open with the air conditioning on. A block of cheese was put away with the wrapper ripped apart so that the cheese was now a much darker orange and hard as nails. The dog was left alone and grabbed a brand new bag of bagels off the counter and ripped them open. It was just one thing after another. The relatively new can opener no longer works. The flowers that were supposed to be watered were drooping bone dry. I was ready to scream!

But in the quiet of the night, I sit alone, and feel calm. I feel like it is all going to be ok. I feel cared for and supported. I realize all of the little things that go wrong make room for the big things to go right. All it took was a quick phone call from a friend wanting to touch base before we left tomorrow.

I am telling you, a quick note, phone call, lunch, drive by “hello”, whatever, makes a huge difference to someone. You may think they are living a perfect life. You may know the struggles they endure. Either way, we ALL need to know others care. We all need to feel like our worst days are better than someone else’s.

Some of you might be wondering why my fabulous parents, who always come to help, aren’t coming to help this time. Well, good question. They are driving to Iowa and coming to cheer Brad and his team on. How lucky am I? I have a nephew willing to help. Parents willing to help. Friends helping. What do I have to complain about? Nothing. Now if I can just get a new fridge shelf, working can opener, fix my tires and figure out a new system for the laundry, I would be the happiest girl in the world.

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

Torture

Huntington Beach, CA 1998

Huntington Beach, CA 1998

Words are becoming a little more difficult at times for Jim.

Memories from when we lived in Missouri 14 years ago are muddy.

Dirty dishes are put away instead of cleaned.

The coffee pot is put in the cabinet with coffee still in the pot, growing mold.

Pajama bottoms are worn inside out.

Feet shuffle.

Back hunches.

Handwriting becoming intelligible.

Words are either misspelled or taper off into lines that don’t form letters.

Body parts sometimes shake for no apparent reason.

This is where we are. Where Jim is.

Recently, I encountered someone who is about 30 and knows Jim has Younger Onset Alzheimer’s Disease. As our conversation progressed, she got a little confused.

“So, will Alzheimer’s kill him? Can it kill someone?”

“Yes. “

“But how? I just thought they forgot stuff.”

“They do, but it progresses so that they forget how to chew, swallow, talk, walk and anything else your brain would tell your body to do.”

“So, what do they die from?”

“Alzheimer’s Disease. But they will probably starve to death or have strokes first.”

“Wow. I had no idea. I thought they just couldn’t remember names or got lost all the time.”

Education. It is imperative that we educate our society about Alzheimer’s Disease and other forms of dementia. There is such a misperception and it harms the cause. This disease KILLS people. It KILLS families and fortunes and friendships and careers and futures. It affects every single aspect of a victim’s world. Finances. Emotions.Bonds. Jobs. Homes. Relationships. Pride. Self Respect. Mental sustainability. Any aspect of living and breathing, this disease WILL have a direct impact on it.

As a friend said to me today, “ If there was something the devil himself could devise and a disease he would come up with, this would be it.” She is right. It is long. It is heartbreaking. It is torturous. Literally. Torture.

Jim and I have been having some heartbreaking conversations lately. We have met again with our attorney. We have discussed funeral stuff. We have discussed care arrangements. We have gone over options for our family as he progresses. It is emotional and gut wrenching. We had to order him a new passport and while filling out the paperwork he couldn’t recall his mother’s birthdate. He got confused and thought he might be cured. He realized that wasn’t the case and cried. He doesn’t want to leave us. He doesn’t want to leave his children. They mean the world to him. But he doesn’t necessarily show that these days. He seems to be able to only focus on one simple task and that will cause him to ignore anything else in the picture. Even if it is the children coming home from school or asking him a question or telling him they love him.

I really, really hate watching him slip away from us. If there were a way to feel like you are in purgatory, wouldn’t it be to take your loved one away, one cell at a time?

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)

No! You can’t.

Redskins game, Dec. 2012.

Redskins game, Dec. 2012.

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

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

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

October 2006. Brad was 2.

October 2006. Brad was 2.

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

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

Brad having some fun in Dec. 2009.

Brad having some fun in Dec. 2009.

 

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

“No.”

“Why not? I bet you would be good.”

“My Mom won’t let me.”

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

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

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

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

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

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

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

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

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

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

Mother’s Day Blessings

 

Frances and Brad with the quilt she made him. Christmas 2012.

Frances and Brad with the quilt she made him.               Christmas 2012.

Lately it must seem like I am really down and a little depressed. I think I feel those things at times and I think it is completely understandable and completely normal under the circumstances I am living through during this stage in my life.

But I also want to share the moments that I am overtaken with happiness, gratitude and amazement.

There are times when good people do simply wonderful things for others that are never spoken of and never repayable.

We have an amazing friend. She used to teach Frances in elementary school. We became friends outside of the class. She is kind and sweet and I have often wished I were more like her (patient and beautiful; just not fair.) Both kids adore her. THREE weeks ago she had her second baby. THREE WEEKS AGO. Today, she brought both of her children to pick up my children so they could go pick me out something for Mother’s Day. So, let’s be clear here. This completely insane and awesome lady had FOUR children with her going shopping for someone else. How easy would it have been to think about it and say, “that would be nice to do but I just had a baby and it would just be too much.”? No one would have blamed her or would have known any different. I have tears in my eyes as I write this. Who does this?  Who takes makes the time, makes the effort, follows through with the plan and does it all with a smile and a hug and a “no worries. I wanted to and I really enjoyed it.” ????

This world we live in is filled with hate and violence and anger and very bad things that are happening all the time.

But this world we live in is equally filled with compassion and support and love and unselfishness.

It is so easy to lose sight of all the good that comes our way. I write about our saga, our journey, and it sometimes seems like there is not only no light at the end of the tunnel, but no end to the tunnel.

Somehow our family is  blessed in the midst of such sorrow. Someone miraculously does a small deed that is HUGE to us. HUGE. I hope those of you reading my words are able to think of someone you know who may need a small, tiny favor  and you are able to help them. Whatever your actions are, be assured that you will make an enormous difference to them. The reward you will reap and the difference your actions make are guaranteed to be well worth the energy you will expend.

Mother’s Day is just two days away. I have already had the best Mother’s Day just by realizing how much others care. As a Mom, I am fortunate beyond measure. My children are what keep me going. My children though are loved by many. They have grandparents, neighbors, teachers, coaches, friends and family that love them and look out for them. I know that if I can’t be there for them, someone will step up and will be. I am comforted and eased by this knowledge. I am relieved to know it not only takes a village but we have a village.

Thank you friends. Thank you teachers. Thank you coaches. Thank you neighbors. Thank you for being surrogate parents for us to Frances and Brad. Thank you for easing my load and for giving me that peace of mind. Thank you for caring about our family. Thank you for being much better than what the news would have us believe.

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

I Take Thee

 

Our Rehearsal Dinner, May 2, 1997.

Our Rehearsal Dinner, May 2, 1997.

Today was our anniversary. And it sucked.

What a difference a year makes. Here is my post from last year about our anniversary. I can feel the love and warmth when I read the words. I am struggling today to feel them.

I try really hard to not fall prey to a self pity party. I try my best to be a realist and just keep moving forward. I focus on the kids. I focus on work. I focus on Jim. I focus on house stuff and bills and friends and the news and whatever else I need to without worrying about me. So far this philosophy has been helpful. I believe it is keeping my head above water and keeping me sane.

But today, I slipped out of my self preservation mode and dove right into the “woe is me” bag of self sorrow.

I knew not to expect much. But Jim had been upset at Easter that he didn’t have a card for me. I was a little confused because we don’t normally exchange Easter cards, but I thought I had learned from this. Earlier in the week, I started reminding him our anniversary was Saturday and then the following week is Mother’s Day. I told him and the kids to discuss what they wanted to do for Mother’s Day and to let me know so I could take them to the store. It seems so, so… what is the word I am searching for? Reminding someone and then taking them to make sure they get you a card or gift….Uncomfortable? Narcissistic? Selfish? Materialistic?  All of the above?

But I had seen how upset he was at Easter and a few years ago on Mother’s Day when they hadn’t gotten me anything and I decided I would be proactive and all would be ok. I honestly have no pre-conceived notions on what I want or expect. That should have made it all smooth sailing.

So on Thursday, I asked Jim if he would like for me to take him to the store to get me a card. We (I) had decided we wouldn’t exchange any gifts for our anniversary, but just cards. He didn’t want me to drive him, so he walked to the store. It is about a mile from our home. He was there and back in less than 30 minutes. I was impressed and feeling pretty good about my decision to be proactive and felt we had done well planning ahead. Of course we do still have Mother’s Day next weekend….

This morning, Brad was up way too early. I didn’t feel well. Brad broke a beautiful pottery bowl a dear friend had given me. Jim didn’t even acknowledge our anniversary even after I told him “Happy Anniversary” and gave him my card. He couldn’t find the card he purchased. It has somehow disappeared. So I guess somewhere in his mind if he didn’t tell me “Happy Anniversary” or that he loved me or anything acknowledging our relationship, then it would make the fact he didn’t have a card for me all right.  I felt worse and worse as the day moved along even though I kept telling myself it doesn’t matter, he has Alzheimer’s, we are still so lucky, blah, blah, blah. My head hurt, my throat hurt and I was tired. I sat at a baseball game and then two softball games, something that usually takes my worries away.

No luck this time.

I called a friend and started to tell her about my day.

“You didn’t really expect him to remember your anniversary, did you?”

Yes. I believe I did.

I am supposed to now become this robot with no feelings. I am not supposed to expect love and acknowledgment. I am not supposed to care when he shows no emotions or tenderness. I am expected to just say, ”He has Alzheimer’s,” and move on.  Yet, I am supposed to show him sympathy and caring and love and patience and understanding at ALL TIMES.

Well, sometimes that just doesn’t happen. Sometimes I want more and sometimes I don’t have anything left to give to anyone.

After Brad broke the bowl this morning, I lost it. Not just at Jim. But at Brad. There were several things he (Brad) should have done in the morning when he got up that he hadn’t and I was tired. Tired of repeating myself. Tired of being disappointed. Tired of being a dictator. Tired of worrying about finances. Tired of trying to get the house clean. When Brad asked me if I was ok, instead of my normal answer of “Yes, I am fine.” I told him and everyone within earshot the truth. “No. No, I am not ok.” What Mom tells her 10 year old she isn’t “ok”?

I am not a machine. I have feelings. I think most normal people would be disappointed if they weren’t acknowledged on their anniversary.  Even if their spouse has Alzheimer’s Disease. Because even if it isn’t their “fault”, it is a stark reminder of where your life is and where it is going to be. It is front and center, nothing else to focus on or to hide behind. It is like being naked and searching for a cover up, only to find the only cover you can find is see-through. It hurts, even as I am  fully aware that I am supposed to understand and not care and therefore it shouldn’t hurt.

Tomorrow is a new day and we will start our 18th year of marriage. I have 12 full months to prepare myself for another anniversary.

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