Archive for February, 2014

Let’s Park the Car

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Oh boy. This is a follow up to a previous post about Jim losing the car keys when he took the dog for a walk….

Today I received an e-mail from a reader. She let me know her child attends the elementary church school  located at the end of our street. She mentioned a message sent out today about a set of keys that were found on the corner and were at the church office. I knew as soon as I read the message that those were Jim’s keys. And yes,  they were indeed Jim’s keys. Complete with the little key fob to help us find them when they are lost.

I was at once elated to have found these keys with the help of someone that had read my words and put two and two together. She mentioned in her message that she often sees him walking by with the dog. Are you getting the same sense of community that I am getting? I feel so protected and looked after. Something I don’t feel with my husband, for obvious reasons.

I was also completely confused and sad. How was it Jim was so certain the keys had been in the trashcan? He continues to say that he heard it beeping when he pressed the button. But obviously and thankfully that wasn’t the case.

Now, on to the elephant in the room….Jim driving. We have limited his driving to close places and familiar roads. But this decision is mine to make. Remember, he was tested last July and passed the four hour test. But I have seen his decline, our friends have seen his decline and our children have seen his decline. He is not the same man that took that lengthy and thorough examination last year.

It is easy to say, ”He shouldn’t be driving, so just don’t let him drive.” There are many ramifications that come along with this decision. The least of which is helping chauffer the children to and from, helping with grocery shopping, running quick errands and providing a back up when I am not home and Frances misses the bus or needs to be picked up from school. The main thought is the deprivation from this point forward of independence for Jim. Without the ability to grab a set of keys, start the ignition and put the car in gear, Jim is completely and 100% dependent on someone else to get him anywhere. I wouldn’t trust him to navigate the bus system. I suppose he could take a cab, but again, there is a bit of dependency on someone else to provide the transportation. This is a weighty issue and I know the answer, but I really don’t want to be the one to pull the trigger.

Thankfully, Jim is a kind and gentle soul. He goes along easily (99% of the time) with my decisions and accepts that I am making the best decisions for our family. I have discussed his driving, or not driving, with him and he simply said, “ok.” Yes, I do know how lucky I am. Yes, I know how many caregivers go through torturous times with taking the keys from a loved one. I am lucky. But then again, not so much.

As if the emotional roller coaster I have been on the past couple of months hasn’t been enough, I now am at that crossroads I have been dreading for a long time. With our very hectic and busy schedules, only having one driver is going to make things much more complicated. I have known this day was coming, but it was always sometime in the future and I was trying to focus on the “right now” moments.

I would rather take his car keys from him a day too early than a day too late. That is the only solace I can keep repeating to myself to help me stay focused and true to what this decision is being based on.

Again, this life sucks. This disease, sucks. This all just really sucks. More for Jim than for me. And he seems to take it all in stride. Thankfully, that is definitely a bright spot in such gloom and doom. He has a great attitude and continues to help as much as he can and shows his family how grateful he is for our love.

As I struggle with this judgement call and the upcoming consequences of such a monumental decision, I must steadfastly focus on those positives and learn to appreciate those small blessings.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (21)

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)

Rough days ahead

 

younger onset alzheimer's disease

JIm, circa 1996. I miss that smile and full of life look. Notice the box of Raisin Bran, even back then. (for a future post)

I am not sure where to start this. Today was an extremely rough day. Rough for me. Rough for Jim. Rough for Frances. Rough for my friends. Just rough all the way around.

I had to be in the office first thing, so I was out the door around 7. No emergency phone calls from Jim or the kids, so I thought everything was fine. During my second meeting of the morning, around 10:30, I get a phone call from Jim.

I could tell immediately from his voice that something was wrong.

“Bad news. I am locked out of the house. “

“How? You have to have a key to lock the front door. What happened?”

“I don’t know. I took Duke for a walk and now I can’t find the keys.”

“Look around the front porch. Have you re-traced your walk?”

“Yes.”

So, I am sitting in a meeting, trying to remain professional, and trying to figure out how I can get him back in the house. I am 45 minutes away. I start texting friends that have keys and find one that can quickly go to the house to let him and Duke in.

I am not too terribly concerned because at this point I have faith that we will re-trace his steps and somehow find them. Or someone in the neighborhood will find them and return them to us.

Much later,  I stop by the house to check on him. We start our discussion of exactly what happened to the keys. This was the last pair of keys we have to his car. He has lost the other 2. This is the 7th or 8th house key he has lost. (I have lost track by now). I am still not overly concerned. I know it will be ok.

But during the course of our conversation, I lose it.

One of my Christmas gifts to Jim was a key finder. You attach one to your keychain and then you have a clicker to press when you can’t find your keys. It beeps and you listen and track down your lost keys. Simple. Right?

I asked Jim if he had tried to use this to find the keys. The first time I asked, he told me it was on a different set of keys. That confused me, but I went with it. The next time I asked, he informed me that he had heard it beeping by the trash can. So he looked, couldn’t find it and well, that was it.

Today was trash day. Today the trash was by the side of the road and the trash trucks came around and picked up our trash, our recycling and so it seems, our house and car keys.

I was so angry. How could he hear it beeping and not know he should dump out the whole trash can if need be? How come he didn’t just roll it back into our backyard before the truck came by? Why didn’t he wait for me to get home? Why did I have to be in the office today? Why couldn’t I be home to fix this for him?

The guilt. The anger. The utter dismay. All rolled into one . One long cry.

I asked Jim to leave me alone and let me take it all in. I told him to give me space. He went for a walk. Which is fine because he goes for about 5 walks a day with the dog.

I went up to our bedroom and let it out. Let out the emotions that have swirled and simmered inside for a while. The screams that came out of me were long and loud. So much so that I had someone ask me later if I had been sick because I was so hoarse. The crying. The tears. The lying on our bedroom floor, thinking in my mind that it isn’t so bad; it will be much worse; it could be worse; this can be fixed. None of it resonated with my instinctual reaction of bloodcurling screams. None of it stopped the drool from dripping onto our hardwood floor. None of it stopped my cries of pain and my eventual realization that I was going to throw up. I have never thrown up from crying. When my Grandfather died, I cried and cried and cried. When my first, second and third loves broke my heart, I cried and I cried and I cried. But I never threw up. Today, I did. Today, I lost it. I lost control. I felt helpless and lonely and alone and I didn’t have an answer. I couldn’t fix the REAL problem. I couldn’t find my Jim in all of this mess. I am rarely alone in our home. Today, I was and today I used that to release the tension, the anger,  the sadness and the defeat I felt.

I finally meandered downstairs and retrieved my phone. There was a message from a friend. She had just seen Jim walking down the road, not in our neighborhood, but on a busy road that we NEVER walk down.

So I called him.

“Where are you?”

“I am on the road by the churches.”

“Which churches?”

“The one Brad played soccer at.”
“Jim, what are you doing over there?”
“Walking.”

“Are you headed home?”
“Yes.”

A minute later I am on the phone with another  friend. She tells me she is close by and will look for him. She calls me about 5 minutes later to let me know that she found him, but he refused a ride and barely acknowledged her.

I can’t cry anymore. I am done for the day. I have no tears, no screams, no anger left. I am spent. It is time to start the evening routine with the kids. Practice, dinner, homework, bed. Bed. What I wouldn’t give to be able to just got to bed, pull the covers up and forget my life. Forget this nightmare.

It must be so terribly difficult for Jim. But he doesn’t show any emotion. He just keeps shuffling forward and doing whatever it is he was doing. He doesn’t seem to care or be concerned.

I spoke to a friend tonight while Frances was at softball. I was lamenting that I just can’t do this. I can’t keep doing this. And the reply was so direct and to the point, “Well what option do you have?”  They were right. I don’t have an option. I have to do this. For my kids. For Jim. For me.

I recently read an article that referenced a study about caregivers. In the study, it said that caregivers have a 63% higher mortality rate. I thought about that and decided that I was younger and healthier than most. But then I also realized that most of those caregivers in the study were only taking care of one person. They didn’t have two children to also care for. I wondered what that took my risk up to. I suppose I will never know. But I do know that I must endure. I must stay the course and learn a new normal. A normal that changes daily. A normal that sometimes makes it necessary to let it all out, even if it isn’t timely or quiet. It is part of the healing process. It is part of the survival process.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (18)

Fighting the Good Fight

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It has been a couple of weeks since I have posted anything. I just haven’t been able to muster up the mental energy to write something legible and clear.

All caregivers go through bouts of ups and bouts of downs. I have been in the later.

I had a birthday and turned another year older.

Valentine’s Day . Nothing else to say.

Work.

Kids.

Kids.

Work.

Relationship stuff. Stuff from our entire marriage; not related to Alzheimer’s Disease.  I have learned something new that this disease takes from you. It takes the ability to have a spouse that can work through marital difficulties with you. Like a marriage should be. When normal life hands you decisions and hurdles, you slowly figure out how to navigate by yourself. I have been in the midst of trying to wrap my head around this since Jim started having difficulties doing so about 3 years ago. I am sort of getting the hang of it, but there are still times I really wish he could help me make a decision or two. But this, this new issue is forcing me to deal with a MARRIAGE situation. It is not dealing with him forgetting a conversation or misplacing an item. It is way past something that simply makes you frustrated (again) and then you move on.

When a disturbance has seeped into your marriage from years ago, you are forced to work on forgiveness and understanding. Now I am made to do so without a partner. Without clear explanations and discussions. Without a way to disperse my anger or hurt through a conversation and eventual understanding. I have been reeling from the realization that Jim may still be in the early stages of Alzheimer’s Disease, but he is unable to fix some things that I needed him to fix. It is now up to me to clear my mind, my heartache and my resentment. I must forgive him without his help. If I needed to be strong before, I am needing the strength of Olympic Gods right now.

It is happening, but at an excruciatingly slow pace. And during the process, I have had to start over. Start over with my grieving. Start over with changing my personality. Start over with thoughts of our marriage, our years together, our conversations and shared experiences. It is almost as if at times I was being torn from the inside out. The cloud over my head was black, dark and unrelenting. I don’t think all of the cold, wet weather the past couple of months has helped. If I am able to move past my pain, I think that I will have accomplished a small miracle.

So I thank all of you for your support, love and understanding. I am so grateful.

Alzheimer's Disease, marriage

At an Alzheimer’s Advocacy Forum in Washington, D.C. April 2012.

Sidebar:

I recently met someone who has a family member with Younger Onset Alzheimer’s. The family started reading my blog. They had questions. So he called me.

“I have to ask you. I mean, you lay it out there. You don’t hold back.” (Actually, I do quite a bit.) “Does Jim read this stuff? Does he know you write about all of this?”

Yes.

Jim and I have had many discussions (mostly before we did our first interviews and before I started this blog) about if we wanted to share our journey and how much we wanted to share. He is (or was) very aware of the blog: what I write and how much I share. He trusts me to do what is right. He trusts me to stay true to the good intentions of helping others and educating people that have no connection to Alzheimer’s Disease.  We both agreed that if I sugar coat our life, my feelings, his battles and eventual loss of capabilities, I would be doing a disservice to all of the other caregivers  that are struggling just like we are and would read those sugar coated words and feel alone. They would think they are the only ones feeling anger and frustrations and trapped and helpless. What would be the point? It is nothing for Jim (or any other person afflicted) to be ashamed of. I will not hide him away and try to pretend that this is easy. It is not. And there is no reason anyone should be made to feel ashamed. It is a disease that affects the human brain.

This blog has the byline: Confessions of an Alzheimer’s Wife for a reason.  This isn’t Jim’s point of view. It isn’t from the vantage point of my children. I am not taking care of my parents. I am a wife and a mother of young children and I am in the midst of a life altering fight. I am sharing my grief, my anger, my frustrations, my pity parties, my support, my love, my surprises, my world. Our situation is very unique. I have no map or guidebook. I struggle each day to write my own battle plan while I take on an invisible foe. I strive to help others so that I help myself. There are days that I am so low, I don’t think I could go any further South. Then there are days that I feel strong and alive and capable of dealing with all of this. I try to share both sides and do so honestly.

Sometimes I sit and listen to music and cry. Cry for me. Cry for my kids. Cry for Jim. Cry for all of the dreams that will not be. And I am allowed to. I am allowed to find a release for the sadness that fills me. I know each of us on this awful journey take into the mêlée what we need to survive. We make it through however we can. I think it is different if you are taking care of a spouse vs. a parent vs. a sibling. I think it is different based on how they are doing. I think it is different based on your other responsibilities and support system. I think it is different based on personalities and situations. There are so many facets of this disease with no timeframe or consistent continuing thread to allow each family dealing with this atrocity any sort of definitive roadmap.

I speak out and I speak up. Not everyone can or wants to. I didn’t choose this path I am on. It chose me. I have made a promise to Jim to do the best I can. For us. For him. For Frances and Brad. For the millions of others that are facing the same demon.  I hope one day we will celebrate a victory together.

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)

Dr. Jekyll and Mr. Hyde

Younger Onset Alzheimer's Disease, family, anger, love

Jim playing with the kids in the snow. Jan. 2014.

There is a part of Alzheimer’s Disease that is very common but doesn’t necessarily affect every victim.

In recent weeks, I have seen some symptoms and signs that Jim may be succumbing to this side of Alzheimer’s and it scares me. It scares me because if he continues and he progresses with worsening behavior, I am scared I will be forced to make a choice between him and the kids.

The one thing to keep in mind is who Jim REALLY is. The man I met, fell in love with, married, delivered two children with and have slept next to for nearly 17 years is a gentle soul with no unkind words (really, I am not making this up) and sometimes the frustrating inability to stand up to others. He has just always been a pretty happy go lucky kind of guy who minded his own business and never gossiped and very, very seldom raised his voice.

Now I am afraid this horrific disease is robbing us of this enduring feature of him. Just like with most of the Alzheimer’s symptoms, it is so difficult to put into enough adjectives to help someone who has not endured this battle to understand. But I will try.

I am sure you have heard before that people afflicted with Alzheimer’s become opposite of who they once were….quiet, shy, prim and proper people suddenly start swearing and speaking their mind. It is like all of the years they thought things but held back are released through a broken dam. I have seen a little of this behavior in Jim and I am hoping that this isn’t the case.

A week or so after we got our new dog, Duke, I was trying to engage Jim in a conversation about our future. About decisions I have been losing sleep over and decisions that will either be good for our family or can cause even more hardships. One of the things I mentioned was possibly moving. Not far away. Hopefully very close by. But, something with a first floor bedroom and bathroom. We currently live in a very old home that has a lot of character but not very practical. There is always a ton of maintenance that needs to be done and Jim just isn’t able to anymore. No first floor bedroom and only a half bath downstairs. Plus, the back door has been giving him a fit. (a few nights ago I actually went to bed before Jim but was forced awake by one of our cats around 2 a.m. When I made it downstairs to let him out I saw the backdoor was wide open with the temp outside at 25°).  So, I mentioned moving to him. His first reaction caused me to drop the subject and forced me to realize that I am in this alone. “I told you not to get a dog.” That was his reply to our dilemma.  It wasn’t just the words, but the way he said it. Very hateful and spiteful. He just repeated to a friend this past weekend that he doesn’t like having the dog. I have to shake my head. Out of all 4 of us, Jim is the one that does the most with the dog. He walks him. He sits on the floor for hours (literally) and rubs his belly. He talks to him like he is a person. He is constantly doing something with the dog. Yet, when asked about Duke he will tell you he doesn’t want him. Not once has he complained to me or the kids or not wanted to help with his care. He will only say he doesn’t want the dog if you ask him. It is just bizarre.

That really wasn’t too bad as far as not being able to reign in his temper or control his voice. Truth be told, I have always been the sterner one and I have worn the title of  “mean” parent since we had our kids. No problem because I usually had the support of Jim and he was sort of the nice guy that could sweep in, lighten the mood and the load and balance the playing field. It seems that is no longer the case for us. Our balancing act it teetering.

A few weeks ago I was finishing a jog and doing my usual cool down walk and a neighbor a few doors down asked how Jim was. After I replied, she informed me she had never heard anyone yell at their kids the way she heard him yell at ours. What??? Jim? Impossible. Me? Yes. Him? A resounding NO. But I have heard him snap a few times, unexplainably at the kids. I have seen him get angry, in ways  I have never before. Not consistently and not often. But unlike I have witnessed him in all of our years together. And just like when I was figuring out something was wrong with him in the first place, when the whole world was telling me I was crazy, I see a different him now. And it scares me. Not for me. I feel like I can handle him and take care of myself. I am scared for Frances and Brad. I am afraid this is what they will remember. I am terrified he will become violent, like so many others. I am sickened to think it will all come to an angry outburst that will force my hand long before I am ready. Or before the kids are ready. Or before Jim is ready. He knows. He knows if he loses his ability to control anger and gets violent that he cannot stay with us. I really think that helps him. He loves his children and me more than anything in this world. He doesn’t want to leave us. He wants to grow old with me. He wants to watch his children grow up. And he should be able to. But I will not be able to let him stay if he becomes violent.

I see him gritting his teeth so that his jawline moves silently back and forth. I see the pressed lips and the eyes that are black and unreadable. I feel the tension in the air.

A few days ago the kids were home from school due to the weather and I had to leave to go to work. Brad begged me to stay. He said he didn’t want to stay alone with his Dad. These are terribly hard words to write. But I want, no I need, for people to understand what this disease does. The Dad that our son would not want to stay with is not THE REAL DAD! There is an imposter that has moved into our home. Sometimes he does a fantastic job imitating our Jim. And sometimes he has stolen our Jim and hid him in a dark closet that we can’t seem to unlock.

Jim and I had some heart to heart conversations not too long after he was finally diagnosed. He was still himself (for the most part) so I know his wishes. I know him. Even so, I worry about this new temper and this new uneven demeanor. It is something I dread.  Please, please don’t make me choose between my husband and my children. Please don’t let Jim become angry and ill tempered. Please don’t let him become sexually inappropriate. (Another very common issue). Please don’t let his anger seep out of him. We all have some form of anger in us. Alzheimer’s Disease erases your filter. It causes you to lose the ability to hold your tongue. So when you (and yes, Jim) are sitting at a ball game and there is a kid on the field that makes a mistake and you want to say something completely rude and inappropriate, your filter kicks in and you remain silent. (or most mature adults do) When a kid is acting inappropriately, you refrain from saying anything because the parents are sitting two rows behind you.  When your children are being silly and laughing and having a good time, you don’t snap at them tell them to stop because they are being too loud.

Please Jim, please stay in control for as long as you can. We still need you.

Younger Onset Alzheimer's DIsease

Jim and Duke out for a snowy walk. Jan. 2014.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (25)