Tentacles

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Jim has tentacles in me. Every part of my being.They are wrapped around my mind, woven throughout my body and engrained in my soul. His warm, soft tentacles encircled my heart and as they balance it precariously, they seem to harden and tighten their grip. His tentacles reach into our finances and my role as a parent. There is a tentacle in most of my friendships and in my career. There is nothing in my life that isn’t touched by him and that hasn’t been for the past 19 years. And now Alzheimer’s Disease touches each one of those things as well.

Sometimes I feel his tentacles being snatched out of me and it sears as if I have been touched by a radiating iron cane. The scars have started to form as they leave their marks. I fight it. I fight losing his love, his touch, and his help with every aspect of my life. A life now being ripped apart at the seams.

There are times I think, I can do this.

And then there are the dark moments that come out of nowhere and cause me to sink into an abyss.

I will get a bill from his hospital stay and fight with Medicare for hours on the phone to no avail as he sits quietly watching from the couch. Not long after, the kids will embark into a loud discussion and Jim again sits silent. By now I am on edge and ready to snap and all it takes is something simple…a misplaced item, something left out that should have been put away, homework not done before the TV gets turned on or rooms not picked up or dinner needing to be fixed or the trash smelling up the kitchen and I am the only one who seems to notice….. Something simple, that in the whole scheme of things doesn’t matter, will cause an enormous amount of pressure and unhappiness. When in reality it is the tentacles; the long, flexible organs that are burning me from the inside out. They are reminding me of the loss of my best friend, my co-parent, my financial advisor, my handyman, my confidante, my lover, my future and my past.

Watching Jim sit in the passenger seat during the brutally cold winter as I got out to pump each tank of gas. Seeing him in bed, unable to put the covers over his feet. Listening to him interject into a conversation with an almost unintelligible sentence that doesn’t relate to the topic at hand. Watching him fumble with his belt and unable to understand as I explain he is missing a belt loop or his pants are unbuttoned. Eyeing the unkept hedge (remember the hedge?), the edging needing to be done, the overall unkept yard Jim would never have allowed to happen.

I feel as if I am becoming androgynous. My role as mother is merging with the role of father. Taking out the trash. Mowing the yard. All of the things typically done in a household by the male. I realize this is awfully sexist, but in every marriage, each person has particular things they do. In our family, Jim did the “guy stuff”. Fixing things, taking care of the yard (except for planting the flowers), doing the dishes after I cooked, helping with homework or playing with the kids while I did my “girl stuff”.  We had our flow of expected responsibilities. It is hard to remember he used to pay all the bills or was responsible for keeping track of oil changes and inspections due. It is all me now. Plus I am accountable for his well being and care. Does he see the stress I am under? Does he see the paint peeling on the house? Does it bother him when I have to help him pick out his clothes? When he hears certain songs does it trigger a memory of special moments in our past? Does he think about me that way anymore?

This weekend is our 18th wedding anniversary. I took Jim to celebrate at a nice Italian restaurant. While driving, I made a concerted effort to hold his hand. I had to explain to him where to put his elbow and make him understand it was ok. But it wasn’t his hand I held. It was a stranger’s. It didn’t feel right in my palm. There were no callouses and the muscle tone was different and the grasp was uncomfortable. I tried to start a conversation several times to no avail. I tried to bring up our years together, only for him to get teary eyed.

I eventually just gave up and we ate in silence.

It is because we knew each other so well Jim was able to get diagnosed so early. I knew something was off and wrong extremely early in this nightmare, even as those close to us doubted me and pointed fingers my way and insisted maybe I was part of the problem. (I am still psychologically battling that one) I think he knew too because he never argued with me. I think he has tried in his own way to make this all as easy as possible on the kids and me. But there is no way to buffer the pain from his tentacles leaving me as he observes in silence, staring at something far off and unseen by those around him.  The touches are gone. The smile is gone. The lovely handwriting. Gone. Conversations. Gone. Help with the kids. No more. The pride in the yard and in his appearance. No where to be found. The connection and the emotional support. Vaporized.

The tentacles will continue to burn and leave me damaged. Ultimately I must find the place deep within me to regrow and become the person I am meant to be. It is no easy task while he is so clearly still here and needing me. I can’t move on, but I can’t afford to stay locked in the recurring torture zone. I am searching for that balance and the tools that will allow me to do both; move forward and remain steadfastly by his side.

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)

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)

365 days of us

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It has been one year since I started sharing our journey of Younger Onset Alzheimer’s with the world through this blog. One year. 365 days of heartache. 365 days of support, love and camaraderie.

In the past year I have read so many stories from around the world of other families going through the same heartbreak. It is comforting and at the same time frustratingly sad. How can so many people be dealing with this crisis, yet there is still no hope, no cure and no real treatments to at least be able to live with the disease long term? You end up where you are going to end up whether you take the medicines that are currently available or not.

We are blessed in so many ways. Along with our curse has come unimaginable strength and fortitude I was unable to see before. We have been given many opportunities to be part of the solution. We have been helped in numerous ways by friends and by strangers.  Sometimes it is difficult to see our path and where we are headed because it is filled with sorrow and loss and suffering. Writing my thoughts and feelings has helped me enormously. It has helped to share and it has helped to see our life from an outside point of view. I highly recommend to all that can to keep a journal or somehow share their story as well. Not only will you help yourself, you will help others too.

I want to take this opportunity to thank you. Thank you for reading. Thank you for sharing. Thank you for your love, prayers and suggestions. Thank you for writing and reaching out to us. Thank you for believing in me even when I don’t always believe in myself.

This is a very difficult life I am living. But I am not alone. It is almost unfathomable the number of families dealing with this pain and bereavement

From the bottom of my heart, I send out my gratitude.quotes-helping-others-anne-lamott-600x411

 

Here are a few more notes from readers I would like to share with you: 

… I am so at the same spot you are with my feelings about my husband’s Alz.  He is a little older (60 this year) but it’s been coming on for years, and I saw it way before anyone else.  I understand the fear and the desire to just run away!
One of my friends put it best for me when I told him about it – he said   “Lynnie, you are so f—–d”.      Note that his comments were for me, not for my husband, who has the disease. 
Forgive my crassness, but I thought you could appreciate the sentiment!
Keep posting – I am a faithful follower, because so much of what you write could be me writing it – our husbands are at very similar stages – mine couldn’t remember how to change a lightbulb last week.
— thank you so much for being crass. I love it. Sometimes that is what the situation calls for!

 

I’d like to introduce myself.  I follow your blog and enjoy reading it.  We do not have the same diagnosis- but parallel lives with a different disease.  We too have small children(10 and 5) whom we are navigating thru something life altering and without a handbook.
My husband, successful in his life, was diagnosed with Parkinson’s disease 6 years ago.  The slippery slope ensued. Loss of pride, dignity and loss of job.  All progressive neurological disorders have their own ugly path.  We just happened to be involved in college athletics and the weak do not survive.  Sometimes your posts, although real, cut like a knife.  I wanted to share with you the great courage I think it takes to speak your truth.  I hope for all of us (especially our children) that compassion exists.  I know that compassion can only be seen once knowledge and education flourish.  So I applaud your educational /advocacy efforts.   
–You are right. It seems all neurological diseases are so hard on families. Thank you for speaking out and sharing your story as well. You are a beautiful family.

 

Hi Karen.  I just watched your video and was very moved.  My husband has Early Onset ALZ and much of what you described is, of course, what we are living through.  God bless you and your family in this struggle and thank you for the efforts you are making to move us all closer to a cure.
–I hope you are blessed as well and staying strong for your family. It is tough some days.

 

I stumbled across your blog and in a strange way, it
makes me feel better about the journey I’m on.  Mine is very similar to yours, in that my wife of 30 years was diagnosed with early onset Alzheimer’s 2 years ago at the age of 48.
Yours is the first voice of someone that understands how I feel and how lonely this road is.  My wife Karen is doing well, and to someone that didn’t know her 5 years ago, she would just seem absent minded.  But it’s far from the same…  And it continues to get worse.  Well enough whining, time to get some sleep and do it again tomorrow.
–Yes sir….we will do it all again tomorrow. Thank you for your advocacy work and for your fundraising efforts.

 

I just came across your blog via AFA’s post on FB. We worked with AFA a lot through the years (I live on Long Island)
My husband was 36 when he was diagnosed. Our children were only 7 & 9 years old at that time. We took care of him at home for 11 years. He passed away, at home, February 28, 2012.
I can tell you it was a very long and difficult battle, but me and my children made it through. We also had a great support system. Although my husband’s family was not there for much, my family and friends were a  tremendous help. It wasn’t the number of people helping us, it was the quality and dedication.
I wish you strength and a sense of humor for your journey. If there is anything I can do to help you, please let me know. Through the years  I have connected with quite a number of spouses who are also dealing with Young Onset Alzheimer’s Disease. It sometimes helps to have someone who truly understands.  
I also started a blog when my husband was diagnosed (www.henleysheroes.blogspot.com).
Be well and stay strong.
–I hope you are doing well and you are still sharing your journey to help us all find cure.

 

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)

Younger Onset Alzheimer's, frustrations

Visiting Mount Charleston, NV 1996.

1:43 p.m.  What time do I need to pick Brad up from school today?

1:45 p.m.  Does Brad have Odyssey of the Mind today after school?

1:50 p.m.  I am sorry to bother you. What time do I need to get Brad up from school?

In the past few months, this has become the norm, not the exception. The norm. It is now the exception if Jim remembers something. It almost calls for a celebration.

Since he has started to decline more and more as far as short term memory, more friends and acquaintances have noticed a change. Just tonight someone asked me if his leg was ok because he seemed to be walking different. Yes he is. He is now doing an “old man shuffle” as I call it, most of the time. PJ’s are usually on by the time I get home from work. He says they are comfortable and I have no argument. Yep, pajamas are nice at 5:30 p.m. Wish I could put them on and relax for a night.

I hate Alzheimer’s Disease. I hate the fact I have no control over our destiny. I hate the fact that no matter what I do or how I do it, nothing is going to change. I hate the fact that I lose my temper. I hate the fact that I am so busy that I am seldom around for the kids when they really need me. I am working. I am working. I am working. I always seem to be working. Again, I am so grateful for having a job, but sometimes the 8- 5 grind doesn’t gel with the Alzheimer’s Disease/Kid meltdown/Life agenda. Plus I have a job that requires some nights and some early mornings. When my kids are both crying for me to stay home and telling me they don’t want to be left home with Dad, I am torn. I am torn because I want to stay. I need to work. I want to be there for them.  Yet we have bills and need my paycheck. It isn’t fair to Jim that they feel this way because I know how awesome of a Dad he is. He was. But I can’t. I can’t stay and I have to leave. I am a torn, broken woman. I think my dilemma is similar to that of a stay at home parent. Except my spouse is living with us. And instead of learning from mistakes like children usually do, my spouse is repeating the same annoying stuff. And we are supposed to understand and be patient and carry on like nothing is wrong.

I sometimes see other people who seem to have everything so easy. I know deep down this isn’t really the case, but when life is handing you lemons, it is hard to see how to make lemonade. It is getting harder and harder to keep the REAL Karen alive. The exasperated Karen seems to be pushing her way to the surface and I am trying so hard to not let her out. Now the smallest things become HUGE difficulties to deal with. The cable company screwing up. A birthday party coordination. Just trying to keep up with paying bills and going through the mail becomes tasks that should be congratulated  when done. Yep. I congratulate myself often now for things that were so simple, routine and easy just a year ago. Then if you throw in anything extra, like an oil change, coordinating a play date, a scam artist calling the house, changing any part of the daily schedule; it all becomes a huge undertaking.  Something so simple and easy becomes completely overwhelming, daunting and a burden that is almost insurmountable. It is insane how this happens, but it does.

Frances told me tonight,” Sometimes you seem to get upset with every little thing that isn’t done right or needs to be done. And sometimes you just don’t seem to care. We need to find a happy medium.”  Yes. She is correct. Yes. She is going to be 13 on Saturday. And YES, I am very proud of her. She gets it but that doesn’t mean it is any easier for her. I am trying to find that happy medium. But as I am constantly being pulled in so many different directions while watching Jim observe from the sidelines, I am struggling to get to that place. I know I can. I want to. I am trying. But, it sometimes appears impossible. But nothing is impossible if you are willing to try and want it bad enough.

It makes me so sad. There is no longer any input from Jim. He struggles each day just to follow his list and to follow a conversation. Sometimes he seems to be fine, but those moments are getting rarer and rarer. And that makes me sad. Even though I am aware of what is coming, when these stages hit, knowing what still lies ahead only makes me guilty for not appreciating what he still can do now.

I am a proud woman. I am a proud woman that has to accept help. I am a proud woman that has to accept sympathy and knowing looks and suggestive comments and do it with a smile while being gracious and grateful. Yes. I am grateful. For so much.  So very much. But just because I am grateful doesn’t mean I  cannot be resentful. I am resentful that I am not able to live up to my potential at my job. I am resentful that I am not able to be a better mother. I am resentful I can’t keep my house clean or clutter free. I am resentful that I no longer have a husband in the sense of the word but I am still married. I am resentful that my children live with their father but he cannot be the Dad that he is capable of being. I am resentful that we worked so hard on our marriage for so long and now our relationship is a joke. There is no communication. There is no intimacy. There is no support. There is no acknowledgement of anything sacrificed or done on behalf of anyone. I am just done. Done with it all. But I can’t be. I will get up, fix a meal, clean, work, check homework, drive to practice, work, and sleep. Sleep is my friend. And my enemy. When I sleep too much, I don’t get enough done.

It is a bitter time in my life. I never knew how strong I could be or how strong I would have to be. I am realizing it now.

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

Funding Anyone?

Alzheimer's funding, alzheimer's disease

Last month I was driving to work in the early hours of the morning and I got angry. I was listening to a story on NPR about how in the 2003 State of the Union address, President George W. Bush committed 15 BILLION dollars to help fight AIDS world wide. I commend him and think that those efforts a decade ago are being felt now in the accomplishments seen in the fight against AIDS. Yes, I understand there are still people dying from AIDS, but the numbers are down. People are able to live productive, relatively healthy lives after a diagnosis. There is now hope, where there once was none. Truth be told, the US has spent more than $50 BILLION worldwide since that speech on the global AIDS fight.

Do you know how much our government has budgeted right now for Alzheimer’s Disease research? $480 MILLION. That is a long way from a billion and certainly an even longer way from $15 BILLION, let alone $50 BILLION.

Just to be clear about how ridiculous the numbers really are: our government spends OVER $140 BILLION a year on Medicare and Medicaid for those with Alzheimer’s Disease. They spend $480 MILLION on research to find a cure so that they won’t have to spend an increasingly astronomical amount on care. Are you getting the picture here?

WHY CAN’T WE COMMIT THE SAME AMOUNT OF MONEY FOR A DISEASE THAT HAS NO CURE, IS GUARANTEED TO BANKRUPT NOT ONLY OUR COUNTRY BUT DOZENS OF OTHER COUNTRIES AND DRAINS FINANCES, EMOTIONS AND FAMILIES FOR YEARS AND DECADES?

It is hard to compare apples to apples. You never want to have your words misunderstood. I am not, in any way saying we shouldn’t support the fight against AIDS or any other disease. If you are someone who is fighting that fight or losing a family member to it, the last thing you want is some blowhard talking about cutting funding and moving it to another worthy cause. I am not asking for any cuts to be made for other disease research.

They are all worthy causes.

alzheimer's disease, funding for research

My mother suffered a heart attack not that long ago. I was scared. I was completely taken by surprise and rushed to be by her side. But after a few days she was home, taking it easy and a year later she is enjoying celebrating 50 years of marriage to my father. I still worry and I still harp on her about taking care of herself, but somehow it is so completely different than watching Jim succumb to the overall evils of Alzheimer’s Disease. She was able to go back to her “normal” life and not lose any mental or physical capacities. There are not financial implications. There are no long term plans needed. She has a warning, she has doctors orders, she has hope.

My father is a prostate and skin cancer survivor many times over. Again, with each diagnosis, surgery and waiting game, I have gone through an array of emotions, which always includes lots of worrying, crying and plain terror. So far, he has remained cancer free, only needing large chunks of skin removed every couple of years. His prostate cancer seems to be in check. Over all, I think that having these scares has made me that much more grateful to still have both of my parents in my life. I am thankful each and every day they are here to help me because they are, at times, my saving grace and my shelter from this storm.

Cancer and heart disease run in my family. Both sides. 3 out of 4 grandparents have succumbed to one form or another of cancer. 3 cousins have been diagnosed, 2 are still with us; Because of advances in treatments which came directly from research. I have lost family members that I loved dearly to cancer. I raised over $4800 while training for and eventually running a half marathon for the Leukemia and Lymphoma Society in San Francisco. I dedicated that run to my cousin Jay, who passed away much too young, at 14, of leukemia.

I have seen the fight and the inability to win. But along the way, I believe the difference is in the ability to have hope. To have the chance to fight. The chance to win. With Alzheimer’s Disease, victims are not given any of those things. You are given a diagnosis and sent home to do research or not. To cry, or not. To tell others, or not. To raise awareness, or not. To see the doctor in 6 months, or not. To make financial plans, or not. To seek spiritual help, or not. There are NO rules, guidelines, or definitive game plans. You are left to your own devices.

I am beyond grateful for the fact that others before me took up other causes that needed research, funding, awareness and cures.  People that lost loved ones. People that were hurt, angry, sad, lost and eventually found by their hard work and dedication to a cause that had taken from them someone that could not be replaced.

Can anyone explain to me why we can’t do the same for Alzheimer’s Disease? Why can’t more people speak up? Why can’t more funds be allocated and disbursed? Is it going to take another Rock Hudson, Elizabeth Taylor and marches in the streets?

The problem arises with the simple fact that Alzheimer’s Disease isn’t contagious (though it can be hereditary).  It affects “old people” (tell that to the thousands of Younger Onset patients). No children are affected (except for the children and grandchildren that are scarred for life by witnessing the Long Goodbye).There doesn’t seem to be a lot of outrage at the lack of answers or cures.

Well, there is outrage with a few of us. I am mad. I am mad that there are people that can speak up and don’t. I am mad that people whisper and try to hide what they are going through. I am mad that frivolous things are funded but more research and programs to help families dealing with this horrible plight are not. I am mad that there are so many of us who have no help or hope or support.

Which would you rather be diagnosed with? Cancer, AIDS, Heart Disease or Alzheimer’s Disease? 3 out of those 4 have treatments and survivors. 1 does not.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (10)

Happy 365 Chances to Make Someone Else Happy

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Happy New Year. We say these words to each other in merriment. We say them to strangers as a greeting. It is something we wish for one another but how often do we help others actually have a happy new year? All year long?  Do we celebrate together and then toss the sentiments aside once the celebration has worn off? Do we discard our desire for others to be happy along with our annual resolutions? Why is it so difficult to stick to lists of things we want to better about ourselves? It is also sometimes just as difficult to remain a steadfast partner, friend and caregiver.

When the clock was striking 2000, everyone was worried about Y2K…remember? Jim and I brought that significant time passage in together on the island of Martinique. It was a blast. We had a spitball fight with the other dinner guests at our resort (a tradition in France, so we were told) and met and danced and rang in a new century with people from all over the world. We had to fly out the next day and there was lots of chatter about whether or not the planes would be able to take off. They did. We were disappointed. We were more than willing to stay another day in paradise. Later that year I would become pregnant with Frances and our family would grow and become enhanced in ways I could have never imagined. I also couldn’t have imagined at the time that in just a few years I would be mourning Jim every day; while he is still fully alive and completely healthy other than his early stages of Younger Onset Alzheimer’s Disease. I suppose it is a blessing to not have a crystal ball. I look back and can see our youth, our love, our happiness. I cannot fathom feeling, looking or living that way again. All I can see now is Jim’s progression and the decisions and work I have laid out before me. How I long to have the ability to be carefree and full of options and life as we were just years ago.

It will be a new year. But will it be a happy one? We are ultimately all in charge of our own happiness, regardless of what life hands us. Keeping this in mind, I believe the only way I will be able to remain happy is to focus on the kids. Focus on helping others. Focus on making it a “happy all year long” for the many caregivers that are going through this journey. I will remain steadfast in my determination to speak out and educate. I have been blessed this past year with new friends that have stepped up to the plate, old friends that have been a beacon of support and love, much needed assistance from perfect strangers and the love and affection of two children, two parents, a brother and a husband that remind me everyday what matters most. I want to pay it forward. With a little money and a lot of time, I plan on doing this. Just finding that money and that time….

It is hard, very hard, to remain strong day in and day out. It is hard to rely on others for help. It is easy to concentrate on helping others at the same time we ourselves are needing help.

It will be interesting to read these words again in 365 days to see how I feel, where we are and what changes have occurred in our world.

I ask that each of you focus on making 2014 a year to find wonders that surround you, find love from within and to help others make this a happy year, all year long. The benefits you will receive will far outweigh those that you give. And it will make our world a better place.

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)

Suck It Up

In St. Louis, 2000.

In St. Louis, 2000.

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

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

The loneliness is excruciatingly painful at times.

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

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

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

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

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

A New Treatment…

Jim getting fitted for his "helmet" to use in the hyperbaric chamber. Aug. 2013

Jim getting fitted for his “helmet” to use in the hyperbaric chamber. Aug. 2013

Last week Jim started a new treatment. Hyperbaric Oxygen Therapy.

To explain it best, I have copied a description from the Mayo Clinic website:

Hyperbaric oxygen therapy involves breathing pure oxygen in a pressurized room. Hyperbaric oxygen therapy is a well-established treatment for decompression sickness, a hazard of scuba diving. Other conditions treated with hyperbaric oxygen therapy include serious infections, bubbles of air in your blood vessels, and wounds that won’t heal as a result of diabetes or radiation injury.

In a hyperbaric oxygen therapy room, the air pressure is raised up to three times higher than normal air pressure. Under these conditions, your lungs can gather up to three times more oxygen than would be possible breathing pure oxygen at normal air pressure.

Your blood carries this oxygen throughout your body, stimulating the release of substances called growth factors and stem cells, which promote healing.

Jim during the treatment session.

Jim during the treatment session.

 There is no real “proof” anywhere that this treatment will heal Jim of his Alzheimer’s.  But, we have been fortunate that a local healing center, Renova Wellness, heard our story and asked us if we would like to try a new approach. What do we have to lose? As we have been told by every doctor, every article, every news story and by every bit of research we have done, there is NO CURE.
So, Jim has agreed wholeheartedly to try this. He will have to go everyday for long periods of time. Each session is 90 minutes and they suggest starting with 20 days, take a week off, then another 20 days. They have had some patients with dementia that have recovered enough to stop asking the same questions over and over and have stopped repeating themselves. We have not been promised a cure. We have not been told that Jim will go back to his old self. But, we are hoping that these treatments will help stave off the disease, give us more time together as a family and possibly help with his short term memory that seems to be failing more often than not.

The Hyperbaric Chamber.

The Hyperbaric Chamber.

It is really sad how desperate and willing to grasp at anything that gives the slightest hope of some sort of reprieve from the steady decline a family can be. Like so many, we are that desperate. We want Jim to have time with the kids. We want them to have time with him; while he is still him.
I remember quite clearly going through all of the testing when we were first trying to figure out what exactly was wrong with Jim. It got to the point where I was disappointed it wasn’t a stroke, a brain tumor, depression or one of the myriad of things we eventually ruled out. All of those have either a treatment, a definitive diagnosis, a game plan of what to do and very seldom result in a possible 10 year decline of all mental skills associated with being a Dad, a friend, a lover, a husband, or a functioning member of society. Please do not misunderstand me, I do not think having a stroke or brain tumor is a cake walk. I am just relating how desperate and warped your views and desires can become as you slowly start to understand the daunting undertaking you and your family are about to begin.
Jim is still on his medication. He is still exercising. He has stopped reading. I am thinking I should try to find some short stories. Long novels are difficult and he was having to take notes so he could remember what he had read. He just finished his follow up testing at the NIH for the diagnostic study. We are participating in our Walk to End Alzheimer’s. We are gearing up for our family vacation next week….FAMILY CAMP. We are ALL very excited. We go the same week every year….
So for the most part, Jim is still Jim. Except when he isn’t. While we were at the NIH, we ate lunch in their cafeteria. I was in line for pizza and he went over to get a sandwich. I was watching to make sure he found his way and he seemed fine. When I walked over and stood with him as he waited, one of the ladies behind the counter asked him if he would like something. He said he would like a Reuben. The second lady behind the counter looked up and said, “I already helped him.”
Jim replied,”No, I haven’t ordered yet.” She argued back she had helped him. He had already ordered. I asked him if he had ordered a sandwich but just hadn’t gotten it yet. He was adamant he hadn’t been helped yet, but at the same time, I could tell he was a little confused and off.
Sure enough, she pulled his Reuben out of the oven and wrapped it up for him. There were no words said by either of us. I didn’t know what to say, since my heart was again breaking and I was no longer hungry. I have no idea what he was thinking….he almost didn’t seem to really understand and realize what happened. But I wasn’t mad or frustrated with him. It is becoming our new normal.
So, if the hyperbaric chamber can help Jim remember what he has ordered, I’ll take it.  If it will help him recall what positions the kids played in their games and if they got hits and runs and outs, I will take it. If breathing in some pure oxygen will give me a little more time with him, I will take it.
Jim and I were able to enjoy a nice lunch in Bethesda, MD after finishing up at the NIH.

Jim and I were able to enjoy a nice lunch in Bethesda, MD after finishing up at the NIH.

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)

The Time is NOW!

 

Jim and Brad in 2006. This was before we knew we would be traveling this road.

Jim and Brad in 2006. This was before we knew we would be traveling this road.

Many of you have written and shared your stories. I have cried reading the heartbreak and the sadness that bestows so many of us.  I am so glad you write to share your stories so I know I am not alone. I know my words help you. I know that sharing my story is making a difference.

I also want to make a difference for those that have no clue what it is like to live with someone with Alzheimer’s Disease or any form of dementia.

I am often asked, “Where is Jim in the progression of the disease?” That is just as tricky to answer as the question of when was he diagnosed.

A couple of days ago we met with Representative Scott Rigell. It was a very good meeting. He gave us a full 30 minutes. He listened. I talked. He talked. Jim sat and agreed when he should and nodded when he should. I know this is so hard on him, but he doesn’t complain and he doesn’t mope around feeling sorry for himself.

As you can imagine, getting ready to meet with our representative entailed picking out a shirt and tie for Jim.

About 6 months ago, we attended a funeral for our mailman. Jim had trouble with his tie, but he eventually tied it and wore it to the funeral.

Three days ago I put his tie around my neck, tied the knot, and handed it back to wear for our very important meeting with Congressman Rigell. As I was passing the tie over itself, I was twisting inside to match the twisting of the silky fabric. All the while trying not to show it to Jim or the kids. It took me a couple of times and I was trying so hard to concentrate on the task at hand and not the fact that my husband can no longer do a tie by himself.

As I mentioned in a recent post,  there were places he had missed shaving, claiming that if he shaved any closer he would cut himself.

Sometimes I confide in acquaintances and friends of the little things Jim does that are driving me crazy and that “aren’t right”.

When I tell them something like, “Jim couldn’t tie his tie today.” And then they reply,”Oh, well Stan (their husband) doesn’t do that either.”

Really?  Your husband doesn’t know not to put cans of tuna in the refrigerator? Your husband doesn’t know to put the paper in the recycling bin? Your husband doesn’t know how to tell if the dishes in the dishwasher or clean or not?

The thing is, I know when they say these things to me they are trying to make me feel better. Like, “it’s ok. My husband is a complete goofball too.”

But it doesn’t make me feel better. It makes me feel like my concerns and my complaints aren’t valid.  I KNOW my husband. I KNOW what he was capable of doing. He could tie a tie blindfolded. He could multi task. He could remember a schedule and not get lost driving to and from a place he had been 5 times already. Do not tell me that your husband can’t remember to take out the garbage either. Guess what? My husband could. And that is why I married him. Jim was an amazing man that made me a better woman. I am not complaining about him as a husband or as a person. I am lamenting the loss of the person that COULD do those things and did those things. That is why I am upset. So what if he can’t speak French or play the piano. Guess what? He never could. But he did know how to paint the house and he did know how to organize a home and knew how to switch out an electrical socket. Please stop invalidating my loss by telling me your husband doesn’t do those things either. Your husband never does because he either can’t or won’t. My husband doesn’t do these things because he can’t anymore. It is a symptom of where he is in the progression of this horrific disease and each time I recognize that he isn’t able to be his old self, it shows the continuous movement of the disease forward on his mind.

I am sorry that your husband doesn’t do the dishes or help with laundry. I married a man that did. I hate the disease that is keeping my husband from being able to do those things still.

I share his decline not to put him down or show him in a bad light. I do this to help others. To educate. It is time we all stop whispering about what it is REALLY like. There is no shame in not being able to remember a conversation you had 5 minutes ago. The shame lies with those that try to pretend that nothing is wrong. When you do that, change doesn’t come and nothing gets done to help those that will travel this road in the days, months and years ahead.

Speak up. Share your stories. Contact your elected officials and tell them they need to support more research funding. If you don’t, NOTHING will be done.

People used to whisper when they spoke of cancer because there wasn’t a cure. Now they slap a bumper sticker on their car proudly acknowledging they are a supporter or a survivor. We need to do the same for Alzheimer’s Disease and other dementias. Until we do, there will still be whispering and embarrassments and cover-ups.

Speak up and speak out. There are too many of us that share this feeling and this long, long path of HELL for nothing to be changing or to be done. We need more funding for research. We need to end the stigma. We need to change the view of memory loss and make it something that the average person cares about, just like they do AIDS/HIV, Heart Disease and Diabetes.

Do not misunderstand me. I am VERY appreciative of the fact we have provided money for cancer research and heart disease research. That has saved the lives of people I care deeply about. But the amount spent on other killers is not proportionate to the amount spent on Alzheimer’s Disease. I just don’t understand why. And I don’t understand why more people aren’t doing something about it.

It is time my friends. The time is NOW.

 

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

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)