Archive for the 'Younger Onset Alzheimer’s Disease' Category

Never Over

A year ago today was the last time I heard my husband say my name coherently. It was a year ago I sat with him and wondered how much longer I could go on. I thought about him struggling to speak, shuffling as he walked, wearing a catheter and briefs, starting to have trouble feeding himself and selfishly I was worried about finances and impacts on me and the kids and wondered how long it would be before Alzheimer’s Disease eventually took him. I figured I still had lots of time.

I found out the heartbreaking answer just a few days later when I got the call he was “actively passing”.

I have learned so much in the past year. I have learned about friendships. I have learned about empathy and kindness and I have also learned about selflessness and selfishness. I have learned about the kind of loss you think you understand until you actually live it. I have felt an emptiness inside of me that I didn’t know could exist or was possible. I felt a perpetual sadness that there is nothing in this world to compare to or which can lighten. The only relief is sleep, but then you wake up. Guilt is so ingrained in me I can’t remember a time it wasn’t part of my being. I have felt helpless as I watched my kids mourn their father. I have buried my husband and yet I still cry for him, long for him, ache for him and miss him. Terribly. I thought I had cried as much as possible before he died. I was wrong. My eyes now have dark eyelids and seem to be constantly swollen.

Yes, a year ago I was struggling to be a caregiver and a mother and somehow keep myself sane. Now I am struggling to recall all of the memories I am terrified of losing and a few I should probably forget. And now I face the challenge of a future alone, without Jim and starting all over. It is like being fresh out of college and trying to decide a path that will best lead me forward to whatever my future holds. My passion is Alzheimer’s Advocacy and education. That is what I do best and I what I want to do. It just doesn’t pay all the bills.

I look at photos and watch videos. I see our love and our excitement together. I see our hopefulness in a future laid out before us. I see Jim as the disease progresses and it all triggers the same feelings that crept in each time he showed how much he was changing. So I stop looking and I stop watching. Then I start to feel a void. A new guilt. Trying to move on. Trying to stop the pain and misery. And I go back to the darkness. There are good moments. The kids and some friends have made sure of this. But there is always that nagging feeling that something just isn’t as it is supposed to be. Something always seems to be missing….

And yet, we were lucky. Most Alzheimer’s patients aren’t able to communicate so late in the game. They usually can’t remember the loved ones who visit or care for them. A year ago Jim said my name. He knew his name. He still wanted to watch the kids play ball (another regret which equals guilt: not taking him because I was worried about the cold….if I had only known) and he could still hug me and tell me he loved me. He loved me. To have had someone intimately know you and still love you with the intensity and the depth that man did me is something you just don’t get over. It is rare, it is special and I cannot express my sorrow for no longer having that kind of support and unwavering adoration. It only comes along once in a lifetime and there have been moments I wonder what I have to look forward to. It seems it will all be a wash from here on out. Yes, we were so lucky in so many ways. The support from our community. The friends who rallied round. The strength we gave each other. But here I am a year later and I am just as lost as I was on that fateful day I got that dreaded call.

I have the kids to watch grow and to parent and to comfort along the way. But what am I supposed to say as they watch their friends interact with their Dads and my children don’t have one? They had a great one and he wanted nothing more than to live long enough to be there for their childhoods and young adult lives. That was the one thing that would make him tear up and cry. Losing his children. Them losing him. Jim was such an amazing man and even better father, it is such a loss for them on so many, many levels. I can only fill in so much. He was so handy and smart and funny and witty and dropped everything to do something with them. They are sadly missing out.

I couldn’t save him. I couldn’t keep him from falling victim to this terrible death. I know it wasn’t my fault, but as anyone who has cared for and loved someone who has lost a battle to a disease they fought against with all their being, there is guilt which never strays far away. And there is guilt for not knowing what was just around the corner. And guilt for losing patience. And guilt for not fulfilling bucket lists and guilt for worrying about the wrong things and not having the right conversation at the right time and not being ready and not knowing that the very conversation you are recording and taking for granted would be the last. For falling asleep when you should have been awake, even if it was 4 am. For letting go but wanting deep down inside to hold on forever. Being in a hurry to get home to fix dinner, or do the laundry or relax….there is plenty of time later. But then you don’t really feel like it and there are few dinners that are made and even fewer that taste good. There is no more relaxing and now you only do laundry for three. And you only cook for three. You only travel as three and only need three tickets for a show. And you now have all the “guy” chores to do and the last thing you ever feel like doing is getting out of bed and doing any of it. When you finally decide you want to do something, either the kids have plans with friends or your friends have plans with their husbands. I haven’t braved a movie solo or dinner alone. It will happen, I just haven’t yet. I will. I know I will. I have to. One day soon. It is my life. My new normal. I can go hiking by myself and travel unescorted and do whatever I want to do, just sans a partner. It takes some getting used to and I haven’t quite wrapped my head around it yet. But I will.

Mourning is a process. A long, slow process. No matter how much you want to get over it, how much time you had to prepare, how ready you thought you would be….the heart and mind aren’t always simpatico and they both run at their own leisure.

A year ago I could go visit Jim. And bring his laundry home to wash. And the kids could come with me and see him, talk to him, tell him about their day and what they were doing. They could play catch with him or sit outside in the rocking chairs. We could see his smile and know he was still with us. Even if it wasn’t the life he wanted. Even if is wasn’t quite the same Jim. And then I know I am so very selfish for wishing another day with him. I really don’t want that because he didn’t. I want the old Jim. Before the disease. The one I fell in love with. But the sick Jim, the one who left me once and for all, he taught me more than anyone ever has. He taught me grace and acceptance and tenacity and patience and the real meaning of love. He showed me each and every day. I am forever a changed woman and forever grateful.

So now I am alone with the kids and no longer have the worry of his care. Or what is coming around the bend. Or what his wishes might be. Or when will it all be over. It is never over. Alzheimer’s takes them, but leaves us with the loss and pain that sticks around for a long, long 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 (13)

Changing the Compass

Where do I begin? It has been a long time since I have written on this blog page and I know some of you have been wondering what is going on in our lives. Thank you for caring. I have still been writing about our family and about my grieving process for Home Instead Senior Care. It is the same writings I did on Missing Jim, so please visit their site.  New postings are done twice a month.  Many of you have asked me to keep writing, not knowing that I am. So click on this link: Let Me Know Blog Piece  to get caught up. And thank you. Really. Thank you for continuing to care and to share your own stories. I feel so honored.

I am still active with advocacy for Alzheimer’s Research and for caregivers. It is my passion and it is part of me. It consumes me at times and brings me out of my darkness.  The kids and I took part in a documentary recently:  Alzheimer’s: The Caregivers Perspective by WCVE in Richmond, VA. I think they did a great job showcasing the various aspects of caregiving and how each patient and challenges which accompany each patient can be different. Thank you to Mason Mills and his team at WCVE for all of their talent and dedication to this project.

The most common question I get asked is, “How are you?”

To be perfectly honest, I don’t know. I have never been in this place. I have never been so forlorn and so devastated.

Recently, I was talking to a friend and I told her I had lost my compass. She agreed and told me I was in the middle of a huge storm. We laughed about me just jostling around trying to stay upright, but the conversation was dark truth hidden in lightness and laughter. While I was taking care of Jim, I was in the storm, but I was contained in the harbor, tied to the dock just swaying around trying to stay afloat. There was a constant feeling of imminent doom. Jim was still my compass. I was always focused on taking care of him, taking care of the kids, in constant motion even if I didn’t always know what was around the corner. I knew my purpose and my role. My world was confined and at times terrifying because I was blinded by the disturbance in the atmosphere around me.  I still had Jim showing me so much in his way he did…by example.

Now I am in the open sea, with waves crashing at the most unexpected moments and the feeling of impending doom just as before, but with times of calm and serenity unexpectedly showing up as well. Moments of lightness which seem odd and out of place. Moments of what is close to a thrill with this new freedom. I am out of the harbor, but without a compass I am lost. I am my own compass and it is a personal change that I know will take time but during the process I am having missteps and successes. New friends are in place, old friends are in place but ultimately I am in charge of weathering this storm and finding my way. I haven’t had this kind of disenthrallment in years. Jim gave me all the room I wanted in our marriage, but I am no longer tied to anything other than my children. Decisions can now be based on new thought processes and changing outlooks and plans. It is scary and invigorating all at once. Naturally, there is guilt. Guilt when I think back on Jim and his illness and my care, my impatience and …. so much guilt. Then there is new guilt. Survivor’s guilt. Guilt he has missed so much of the kids’ lives. Guilt if I smile or laugh. Guilt at trying and sometimes succeeding in being happy. Guilt I couldn’t save him. Guilt I wasn’t perfect for him. Guilt I am trying to move on and need to move on.  Guilt underlying every breathe I take.

Filling out school forms and being the only parent listed has new meaning. (Actually the form options were separated, divorced, single and married. I wasn’t sure where I fit in) Calling the utilities and taking his name off the bill. Doing his chores. Seeing his pictures. Looking through his things. Choosing when to put away his toiletries.(I haven’t yet) Still sleeping on my side of the bed. Checking the widow box on official forms. Explaining I lost my husband to people I meet. Trying desperately to remember each memory and terrified I will forget something as simple as what songs we sang together or what meals he liked and what he smelled like. What he felt like to hold. How calming he was for me just to be near. Each day takes me further away from him and from us.

I used to say I was lonely. It is surreal how now that he is gone from us entirely, I no longer feel lonely. Sad, scared, bitter, angry, emotional, and a myriad of many things, but not lonely.

I am here. I am surviving just as I always have. Some days are easier than others. Some days I sleep more than others. Sometimes I just don’t think I can keep going. Somedays I recognize how blessed and lucky I am. Overall, I am fine. Just fine.

Brad and I at the Walk to End Alzheimer's. Oct 2016

Brad and I at the Walk to End Alzheimer’s. Oct 2016

posted by Karen in Younger Onset Alzheimer's Disease and have Comments (3)

Update

Screen Shot 2016-03-29 at 11.39.47 AMJim is still with us. I say that statement with a very loose context.

Jim is resting. Jim is sleeping. Jim is….Jim is….technically alive.

Waiting to die. The waiting for him to die takes a toll both mentally and physically. And it totally SUCKS!!

Sitting, watching, holding his hand, rubbing his hair. Watching for the slightest change in breathing. Seeing a slight movement of his lips or a flutter of his eyes and wondering what it means? Is he trying to tell us something? Is he in pain? Does he want something? I’m sure he wants a huge glass of water and a very large meal.

His hands and feet were cold. Yesterday they were warm. His coloring goes pale, goes yellow, then he is pink with warmth. Then he is cold and a grayish/bluish tint.

A friend came and played guitar and sang for him. We could tell he heard her. He moved his mouth. His eyebrows raised. His demeanor changed. As it does each time his children enter his room. He knows they are there. He seems to long to reach out and hug them again. His mouth hints at a smile. His beautiful blue eyes struggling to see each of their heartbroken faces.

His legs jerk. He grimaces in pain if his left arm is moved or we try to sit him up. He is getting stiff.

This is torture. For us all. Our friends. Us. And for Jim. He may be out of it, he may be on drugs, but I know. I know. The man I married and have loved and known for many years, did not want to linger. He did not want us sitting around watching his demise. He lived a life full of life and it doesn’t seem fair this cruel disease is robbing him of the death he wanted.

You hear the statement “We don’t treat our animals this way, we shouldn’t treat our loved ones this way.” I never really had much of a thought one way or the other. It was always someone else’s fight. I can tell you, watching him struggle to open his eyes half way, keeping them there, trying to will them to let him see his children one last time….struggling to breath, dying of thirst (literally), starving to death (literally), coughing up the slightest liquid we try to give him……….this is inhumane. Maybe God doesn’t want us to kill, but he allowed us the knowledge of how to take a life with out pain or malice for a reason. Sometimes, we should be smart enough to use it.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (46)

I Got That Dreaded Call

I have contemplated this post. I am wavering on sharing too much and possibly not sharing enough. I am conscious of why I should and why I shouldn’t. Right at this moment, sharing is winning the internal battle.

This is a most private situation. One every single family struggling with Alzheimer’s Disease will unfortunately face. I ask for privacy for our children and for our family.

Jim is actively passing. Or transitioning. Or dying. The key word that I have learned from our hospice team: actively.

I have decided to share with you for several reasons. One, your support throughout the past years as I have struggled and grown as a future widow and caregiver has been unwavering, comforting and life changing. Two, I suddenly realized if I don’t inform you what is happening, the next post you read will be announcing Jim has passed away and it will come as a huge shock and might be very disheartening and traumatic. I am sure this post is. It is shocking for me.

Jim was fine four days ago. Well, the term fine is relative. He was as he has been. Walking, eating, mumbling with some coherent words thrown in.

Wednesday morning I received a call from hospice letting me know he was not well. High fever. Blood in his catheter bag. Low blood pressure. Bluish extremities. And he could not be aroused. A good friend came over immediately to the house to comfort me and assess the situation. Another good friend met me at his facility and sat with me as I listened to all of the medical terms and information that seemed to be important but somehow I was barely able to process what I was hearing.

Jim’s doctor came. He gave his best guess as 3- 5 days left. I was in shock. How was this happening now?  We have long known this day was coming, but it has come with a suddenness that has left me ill prepared. He hasn’t gone through several stages…soft foods, pureed foods, bed ridden, wheel chair, walker, falling….there is supposed to be more time. There is supposed to be more warning.

Yet, here we are. At the end. Unless a miracle happens. Unless his youth and strength somehow prevail. That is what slips into my mind. Maybe this isn’t it. Even though hospice does this for a living. Even though his doctor concurred. Maybe this isn’t really it.

We are not sure what has happened. He fell Tuesday, but didn’t seem to have any issues from the fall. He was checked over twice. He has had so many different issues with his catheter and UTI’s, there is a possibility of sepsis. Or, it could be something we just don’t know.

What I do know is my kids are heartbroken. I do know I thought I was ready and prepared. I thought I would be clear headed and would know what to do, but I was wrong. I do know that the love and support and guidance we have received year after year is stronger than ever and making a difference that I am unable to explain at this juncture of the game. I have been overwhelmed and I am thankful, humbled and indebted.

I am also exhausted. I don’t know how sitting around a room all day can make you so tired, but it most certainly does. Maybe the lack of sleep is also playing a role….

The first day, Jim was unresponsive. The second day, Jim showed some recognition, ate some ice and rolled on his side. The third day he ate ice cream, said some words, mumbled and gave me a hug. Today he hallucinated, tried several times unsuccessfully to get up, ate some applesauce and said a few more words. Through it all he is in pain if he moves his left arm, if we try to sit him up or if he moves a certain way. He also has quite a bit of myoclonus (jerking). There are times his coloring seems to be improving. There are times he seems to be so much better than his initial state, yet in the end, he usually ends up with a blank stare and confused look on his face. He has smiled. He has told me he loves me. He has hugged the kids. He has not had anything really to eat or drink since Tuesday evening. (not enough for the medical community to count as intake). He has been up out of his bed twice since Wednesday. He has looked me in the eyes and with a tear falling down his cheek, reached out his weak hand to touch my face.

This is excruciatingly painful to witness. I know many of you will be very upset by my words. I know you care deeply for our family. I know you want to do something. Thank you.

I had started a post that was going to include a video of Jim from just this past Sunday, just a couple of days before this started. I am scratching that post. But I am going to share the video because I want to show where he was. I want people to see what Alzheimer’s Disease does to a wonderful human being. I want to break the misconception that Alzheimer’s Disease is just old people forgetting someone’s name or getting lost. I want to erase the stereotypical patient idea. I want the stigma that follows a diagnosis to be a thing of the past.

Again, thank you for your concern, your prayers, your support, your love and for continuing to help our family during a most difficult and painful 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 (64)

There is No Replacement

Martinique. Dec 1999.

Martinique. Dec 1999.

Words sometimes fail me. I search to find the right expressions to convey thoughts, feelings, dilemmas, struggles, pain, gratitude and so much more on a daily basis. Oftentimes I can go through a varied amount of emotions in less than ten minutes. My thoughts move rapidly from one thing to the next, seldom stopping to absorb the impact before rushing into the next viewpoint.

How do I handle the stress and pressure I face daily? I sleep. Way too much. I sometimes try to talk to friends, but there is only so much they can relate to and so many conversations about the same topic that can be had before they disappear. I write. I used to work out. I drink. I watch too many episodes of shows late at night. I listen to music. I read. I have never felt so alone while being so loved and supported.

Jim. He is the missing ingredient. Having him to listen, touch, feel, hear, smell, know….having him be part of each day, each moment, each thought and knowing he would always be there was a comfort I have lost forever. There will be no more passionate kisses or discussions about a presidential race or a movie we saw. There will be no more passing back and forth of the paper. No more taste tests in the kitchen. No more arguments. No more sitting comfortably together in the sunshine on our front porch. No more worried discussions about the kids or bills or anything. There is now only a silence that creates a deafness that is so loud and protruding, it suffocates me emotionally to the point of exhaustion.

Recently, I have delved into some boxes of old photos. Places, times, memories came flooding back. Things I couldn’t remember are gone. Jim is not able to help me recall the spitball fight in Martinique with the couples from Italy. Or were they from Australia? Wait, there was a couple there from Colorado and the rest were from Europe, right? When did we drive to California and stay at the Kaleidoscope Inn? We went to the Hearst Castle and we ate at that really good steakhouse, what was the name of it? Was it Thanksgiving or Valentine’s Day we stayed up on Mt. Charleston and I was so upset we couldn’t get the basketball game because the satellite was frozen? 

Gone. If I can’t recall the details, I no longer have my guy to ask. Even if he remembered, I probably wouldn’t be able to understand him.

There is no denying I have been grieving him over a very long time. It is shameful to admit I wish I could just move on. Along with those words, comes the horrible reality of wanting to be done with watching him succumb to each phase Alzheimer’s brings on. To stop long enough and really think about wanting to be done with him, means he will be dead. And to think of him being dead takes all of my joy and life away. But to think about continuing the visits and not knowing before stepping foot in his facility what he is like this particular moment of this particular day….will he know me? Will he light up like he always does? Will I be able to make out something he says? Will he be awake? Will he be drooling?   Does it matter? He isn’t going to miraculously emerge as his old self, able to carry on the exchanges we held just a year ago. It is exhausting and mentally handicapping.

There have been conversations with friends that have naturally touched on the inevitable subject of me moving on. Taken out of context, it seems cold, deceitful, shallow…. pick your adjective. But, sometimes, as we all know, conversations evolve from one thing to another and things are said that upon looking back might be regretted or just simply a little shocking that the words came out. But at the time, the subject matter came with ease and without malice.

But there it is. I suppose if I were a typical Alzheimer’s wife, in later years, the topic might not be broached. But I am 46, with what I am told are plenty of good years ahead of me. Hard for me to see it. Hard for me to see past the next 5 minutes, let alone years from now. The thought of trying to start a new relationship not only overwhelms me, it makes me a little sick to my stomach. The thought of trying to explain to someone all that our family has endured, the introductions to friends, the awkward getting to know you stages….ughhh! That is why I married Jim and stayed married to Jim (among other reasons). I was done with the whole dating scene. And now there are apps for dating and websites and social media…good grief. And introducing them to the kids and meeting their kids and all of it just makes me want to crawl in a hole.

Truth be told, I often refer back to many articles and notions pertaining to being single and thriving. Why do I need a man? I am capable all on my own. I can be a single mom. I can go to a movie by myself, enjoy a meal solo and even travel wherever and whenever I want. Right? Where is it written I have to ever find someone? Somewhere along the way it is engrained in our very being: You should be with someone. You should want to be with someone. You have less value if you aren’t partnered.

I don’t have time. I am taking the kids to an activity literally 6 or 7 days a week. Almost every night is spent at a practice or a ball game. And I am fine with that. I love watching them and it gets me up and out of the house. I feel so lost and out of control at times and just keeping my life simple seems about all I can manage. Our house is small, but sometimes can seem so empty and vast. I would be lying if I said the thought had never entered my mind. Finding someone new. But just like the fleeting thought of wanting it to all be over, it is superficial and without merit. It isn’t a replacement for Jim I long for. A hand to hold. A laugh to share. A book to discuss. It is Jim and our collective life I seek to find again. The connection I long for cannot and will not be found in another….yet it is so easy to think in terms of wanting to have that all again. When I delve deeper, there isn’t another I picture…it is the memories with Jim I ache to recreate and hold steadfastly onto so I don’t forget them too.

Obviously, I am not “ready”.

I look in the mirror in our bathroom after getting out of the shower. My nakedness reflected back to me, with changes showing each year.

Jim saw me before the wrinkles. Before the cellulite. He saw two children born from this body. He saw me before the gray hair. He saw the youth and the beauty. He saw the immaturity and waited for the personal growth. There will never be someone who saw me and loved me in the same capacity. He has seen and heard me at my all time worst moments. When I was tired, hungry, frustrated, mad or acting like an ass for no apparent reason. He saw the real me. And he stayed. He never waivered. He loved me and continues to love me with every single fault and horrible thing he has witnessed from me for the past 20 years. We built traditions with our children. We fought through times of hurt and miscommunications. We struggled. He chose me. And continued to choose me year after year. We trusted each other. Trust. He still trusts me. In a world of throw away relationships, we have held together for better and for worse.

Our vows said to have and to hold in sickness and in health. For richer and for poorer. ‘Til death do us part.

There is no need to find anyone else to cover those things. I’ve covered them all with Jim. There is nothing left. Nothing left to give.

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

Dropping the Ball….Again.

Brad and Jim working on a puzzle. Jan 2016

Brad and Jim working on a puzzle. Jan 2016

The one part of being submerged in the Alzheimer’s world I never get used to is the amount of time I seem to waste on the phone or searching for answers online.

When Jim was first getting tested and diagnosed, I did research online because the doctor didn’t tell us much other than he had Mild Cognitive Impairment with the probability of advancing to Alzheimer’s Disease. I had no idea what that really meant.

Then when I asked during a follow up visit about support groups and the doctor recommended a group sponsored through his hospital for head trauma victims, I went back online and found The Alzheimer’s Association and their support groups. And I found a new neurologist.

I turned to the internet to read up on the latest treatments and research. Then I stayed up countless nights searching in vain for a clinical trial for Jim to participate in (he was too young and ended up being part of a diagnostic study).

Throughout the years, there have been times where I needed to understand so much more than I felt capable of without any help from a more knowledgeable source. I still feel this way; inadequate and dimwitted.

Filing for Social Security Disability for Jim took hours. Applying for Medicaid took hours. Filling out the Aid and Attendance paperwork, meeting with attorneys, social workers, government and veteran organizations….hours and hours and hours.

This past summer, I spent Jim’s last months at home on the phone probing for answers that never appeared. I made call after call, desperate for help with his care, assistance transporting him back from Connecticut, dealing with the VA, looking for a new home for him and trying to get some answers about what all of our options are (or in reality aren’t).

Now, I find myself back at my desk, searching online and making calls. This time to fulfill Jim’s wish to continue helping find a cure. He wants to donate his brain/body to research when he passes away. Sounds simple enough. I am sure there are many options and I can just tell his doctor and they can set it up. Wrong again.

In order to donate your brain tissue for research, you must be participating in a study before you die. You need to go to that location, have them evaluate you and become enrolled in the research program. If you wait until you can no longer travel, it is too late. The ironic part of this is of course that for many years Jim was too young to participate in trials. Even though he is the perfect research specimen, having no other medical issues other than Younger Onset Alzheimer’s and he was willing and able to participate,  possibly assisting a researcher somewhere to understand something that could change the course of this horrific disease, no one mentioned donation after death. No one asked if he would participate later. No one told me the timeframe and what needed to be done.  I didn’t ask.  And now I have failed him. There are only a limited number of brain banks around the country. Most are not even close to us, which is another problem. Several places would not take him because he is too far away. One study needs another family member to be involved in their program. One study, in New York, needs him to come in person to be evaluated. Maybe if he was having a good day, we had a private plane and the stars aligned just right.… It is so difficult to just accept “not possible” as an answer.

So, I tell you all of this to educate. If you or your loved one wants to donate brain tissue, start working the process now. It is not as simple as making a quick call. I am feeling like I have not fulfilled Jim’s wishes and wasting what his atrophied brain could teach. By not doing this last year, when Jim was capable of traveling and verbalizing his desire to participate, I have let him down and I have let down many others, including our children. Again.failure-is-success-if-we-learn-from-it

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

Call to Action

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Recently, I was honored to be nominated as one of Healthine’s top health blogs of 2015. Whoa. Me? Missing Jim? That is pretty amazing stuff considering all of the informative and well done blogs out there.

As of the moment I am typing this,  Missing Jim is in third place. Which isn’t too shabby. Guess what? The blog in second place is also discussing Alzheimer’s Disease. So currently 2 out of the top 3 blogs are dealing with this Hellish Disease. So, either way, it is a win for us all. I encourage you to take a look at some of the other blogs. There are amazing writers sharing lots of information dealing with a wide range of health topics. If something is ailing you, this is a one stop shop to find some support.

That being said, I need your help. Please click here Healthline Blog Contest and vote for Missing Jim. You can vote once every 24 hours, once through Face Book and once through Twitter. (So technically, you could vote twice a day) The contest ends on January 21. Eight days.

There is even a prize…. $1,000 to the top dog and $500 to the two runner ups. Should I be fortunate enough to place in the top 3, the prize money will go to The Garner Foundationwhich helps dementia caregivers. 

The kids have been keeping track and remind me daily to vote and ask how we are doing. We are a competitive family….

Thank you. I appreciate you taking the time and making the effort to vote. Please share as well. I am sure you have friends who would be willing to vote too.  As always, thank you for your continued support of our family.

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

Used to be Mine

While listening to this song by Sara Bareilles (I am a musical emotional hostage on many occasions) I realized something: I am scared. Really scared.
Most people who know me would never think of me as a person afraid of anything (except snakes): I am strong. I am outspoken. I am opinionated, I am tough and emotionless. But the reality is:  I am not. Any of these things. I am alone in a big world that can be scary. Sometimes a little terrifying. I found a man who saw me for me and loved me anyway. I found a man songs are recorded about and love stories are written about. He loved me with all of my faults, my weaknesses and my inconsistencies. Despite everything, he loved me. And he still does. And it hurts. It hurts to have had that kind of love, the kind that some never have, that people long for and dream of, and to watch it slip away and realize that it will never be again….it is not just scary, it is crushing. There is nothing I can do to save him therefore saving us. I can’t apologize for something done. I can’t take back something said. There is no “fixing” this. There is no making up or forgiving and working it out.  I am not an easy person to love. I don’t just go along with things. I question. I wonder. I dream. I am passionate to the point of annoyance. And Jim saw this in me and liked it. He liked me and wanted me. He chose me. I chose him. And something else bigger than both of us chose him to leave first. How? How could anyone think he should leave first? He was such a great Dad. And a great husband. And a great man. On all accounts. Jim gave. Jim was good. Jim was kind.

Alzheimer's Disease, frustrations,

Jim and I at the Grand Illumination in Colonial Williamsburg, Dec. 2011.

Jim made this world a better place because he was a hard worker, a giving man, a forgiving person and an accepting human. Just what we all need. And yet he is being put through an unfathomable demise. How cruel. How unfair. How awful for everyone involved.
I no longer know who I am. I question each conversation I have. Sometimes I can’t even recall what I said or who I said it to. I am not just lost; I am not even searching. I used to think I was…searching for something I won’t find and not a clue what I am looking for. I am searching for the man who loved me, who made me ok with me. I know I am supposed to be a woman who doesn’t need a man to love herself or who needs a man for anything and I don’t….but the truth is…Jim completed me. He made me better. He made me like myself. He made me a better mom, a better friend, employee, citizen. A better everything. And without him, who am I? Am I still deserving? Am I still likable? Am I still a good person? He was head and shoulders above me in so many categories and without his companionship and guidance I am on shaky ground. How can I live up to his standards without him showing me the way? His strength and unwavering belief in me is a lot to live up to.The trust he has shown me not only throughout our marriage, but especially as he has succumbed to this disease…unquestionable trust. It is almost suffocating. The decisions I have made on his behalf and his lack of argument are to be commended and should be held in the highest regard. Even while this disease ravages his brain, he trusts me to always do what is in his best interest. Amazingly so.  He brought out the best in me and it is now up to me to find my own strength, my own North Star, my inner GPS system. No one to remind me when I fail that I will be ok and that I will some day succeed. That I am capable. That I am beautiful despite the wrinkles and gray hair. That I am still interesting and wanted.
Without getting angry, without making excuses, without Jim…I move forward. Not at the pace I would normally. Not with the same spirit and drive. Without my partner…without my biggest fan…without the comfort of knowing no matter what mess I have made, no matter how terribly I have failed, I will have someone who still thinks I am awesome and competent. Someone who will wrap his arms around me and make the world disappear………no more. I am alone with my own failings and my trials and tribulations. I can only reach deep to a place I have never thought I could or would have to go and forge ahead. Without Jim’s inspiration and acceptance. Without his smile. Without his wisdom. Without all of the many things he brought to us all through his quiet example. I love you Jim and I miss you so very much. Thank you for being you and allowing me to be your wife for 18 years.

Brad, Jim and Frances. Nov 2015.

Brad, Jim and Frances. Nov 2015.

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)

It’s a Jolly Time of the Year

Frances and Brad playing a Christmas tune for Jim. December 2015.

Frances and Brad playing a Christmas tune for Jim. December 2015.

I am late packing and loading the car. I am always late these days. And it’s ok. There are worse things in life. I am learning to be all right with my new shortcomings and appreciate my new strengths and recognize my contributions that enhance this world. It is a process that will probably last my lifetime, but one I am steadfastly enjoying being cognizant of.  Life is good. Really. It is.

I know there are many parts of my life that just suck. There is no other word to use (not one I will publish anyway). There are times I am severely depressed. I cry. I sleep. I become a sloth. Again, it is ok. It is a process.

There is another part of my life that is the best it has ever been. The love. The support. The care. The new friendships and re-connecting with old friends as well. The opportunities that have arisen and the feeling of contribution. I am constantly being thankful for something positive happening in our lives, either for myself, our children or for Jim.

This week funding for Alzheimer’s research reached an all time high. Hillary Clinton became the first presidential candidate to make Alzheimer’s research a priority and suggested doubling the amount just passed. That is what we have been fighting for. Surely other candidates will follow.

Our Christmas has already been a wonderful one. The spirit of the season has been sprinkled throughout our home and our lives. We have had much to be happy about. Jim had his two best Air Force buddies come for a visit and he was amazing. He didn’t drool. He wasn’t hunched over. He showed lots of expressions and laughed. You could understand him most of the time. It was like a Christmas miracle. They had such a nice visit. It was good for all of us.

Today, we stopped by his home and he was not quite the same. He was hunched a little and not as aware of what was happening around him. But the staff had decided they wanted to help Jim do what he always does best: Give to others. So, they got the kids and I cards and gift cards and got me a new watch that were from Jim. It was heartwarming to see his smile and feel his hug and his kiss as I thanked him for his wonderful gifts. And the staff. Wow. How thoughtful. How generous. How, how….how do you convey the depths of gratitude? Not only do they take great care of Jim so I can take care of the kids, but they also find a way to give back to us through the material that transfer into emotional.

Our world seems to be full of hate and turmoil and so many events that challenge our belief in our neighbors. Our family is blessed to be reminded each day of the good that is surrounding us even while there is much to be horrified about. I challenge each person to commit to making our world a place that reminds us all of the good we can be and should be. It doesn’t have to be expensive or time consuming. It can be a small gesture or a grand one. It can be whatever you can do at that moment. Imagine if each of us took the time to hold the door open for others, or paid for someone else’s coffee, or picked up that piece of trash someone else threw down or refused to get angry at the person who cuts us off while driving down the road. People make mistakes. Forgive. Know that we each are fighting our own battles. Make the world the place we want to live in and we want our children to live in. There is enough ugliness without adding any extra. I am just as guilty as the next person of not always being the most patient or most thoughtful, but I will continue to improve. Will you?

I was asked today what I wanted for Christmas. Without trying to sound cheesy or like a Miss America wannabe…my true and real answer (besides a cure for Alzheimer’s Disease) is for everyone to be treated the way our family has been for the past year. I wish for everyone to feel the love and receive the help that our family has been blessed with. Life is a rough journey and if we all stick together, the path can be a smoother one. So, my Christmas wish is for all of us to be a little kinder, a little more patient and understanding and little more generous with our time and our love.

dale-evans-rogers-christmas-quote-embellished

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (9)

Denied Again

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I have taken the drastic measure of scanning and sharing this most recent Aid and Attendance denial from the Department of Veterans Affairs because many don’t believe the VA would not help us. Here it is my friends, in black and white. Please note the list of forms I submitted under the evidence considered on the second page.

Yes, I can file an appeal. But I am not sure the time, energy and effort will be worth it to just be denied again. I have so little energy and time at this point in my life, I am not sure I can. I am sure I will look back and scorn myself for not doing so. Maybe after the holidays….

I know many who have written to tell me their grandfather, father, brother, neighbor, friends uncle and so forth are receiving Aid and Attendance and therefore we should too. I agree. But we are not. I have filled out paperwork, re-submitted paperwork, spent hours on research and information needed, spent hours on the phone and meeting with various experts and I am tired. I already regret the amount of time I spent this summer trying to get help. Instead of enjoying and cherishing Jim’s last months and days in our family home, I worked until exhaustion and emotional craziness,  day after day, making calls, sending emails, doing research and repeating our story, over and over again in front of Jim. He just sat and listened to me beg for help repeatedly. I wish I could go back just those few months and instead sit with him, walk with him, hold his hand and know that we will be ok. Not because the government will help us, but because our friends, our neighbors and even strangers would eventually save us. I am not mad or bitter, ok, maybe just a little, but only because I can look back and realize the precious time I lost with him that should have been our family time to have together. We couldn’t have known the short timeframe for his decline. And I will never know how he was impacted listening to my pleas and knowing he was the cause of so much stress in my life. Jim has the kindest soul and he would never want to be the person causing hardship. He always is the first to offer help.

At the home he is living in, they have an angel tree for all of the residents. When Jim was asked what he wanted for Christmas his reply was a true epitome of his selfless nature. He wanted a watch for his wife.   That was it. Nothing for him. Just me. Even now, he is still wanting to take care of me and the children. Which, in many ways just makes me sadder. I am warmed by his generosity and love but there is a personal loss felt in each and every moment of my day. Even when I am at my happiest time now, it is shared with a subconscious nudging that I am no longer capable of complete and utter happiness. There is something missing.  In the past several years, there has only been one moment I have felt all my cares leave and I could laugh and feel stress free….walking on the beach recently with a friend. We were able to be free of our worries, our guilt, our minds were open to laughing and sharing stories and it was a needed break.

I have been and still am loved by a wonderful man and a kind and giving husband. How lucky am I to have felt such reverence from my partner? Which is why I find it so hard to be completely happy. I know what I am missing.

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)