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)

Sorrows Under the Mistletoe

Brad putting on the angel. Dec. 2015.

Brad putting on the angel. Dec. 2015.

My heart is heavy. My mind is scrambled. My energy wanes day to day. My world is spinning out of control with a speed and slowness that are confusing and indecipherable.

Jim is still progressing. Of course he is. He has a disease with no survivors. This day and this hurt was promised to us years ago. But to be a front row spectator to his absence while being present is perfect torture. I would prefer to be waterboarded while having my eyelashes plucked out one at a time.

He no longer stands up straight. His posture is that of a 95 year old with extremely poor mien, including the shuffling, the humped shoulders and the constant stare at the floor or something no one else can see.

He drools. A lot. Sometimes.

He mumbles. He says a word. He mumbles more. He is silent.

He feeds himself. He needs help being fed.

He is down to 160 pounds.

He has had 4 Urinary Tract Infections in just over two months. He has had a catheter in for that same amount of time.

He smiles. He picks up invisible things off the floor and puts them in his pocket or hands them to me.

He walks away.

He falls asleep while sitting in a chair or carrying on a “conversation”.

He can’t read. He can’t write.

He has had a few days of not knowing who I am.

He often doesn’t know the children’s names, but does usually recognize them.

He loves company but walks away a few minutes after you arrive.

He doesn’t watch TV.

He will still kick a ball or try to shoot some baskets. On the right day.

He cannot go to the bathroom by himself.

He cannot tell us if something is hurting.

He cannot get dressed by himself.

He still hugs me and kisses me. He still lights up when I arrive to visit him. And then sometimes he doesn’t.

He lives each day in his own world and I try to visit and understand but I only end up crying in the car on the way home or late at night when I search through old photos trying to put together a photo album for him.

I show up to my life half heartedly because the other half of my heart and my life has left me stranded midway and so part of my chest remains empty.

There are times I look at him and wish he would die. I see him so unlike the Jim who took so much pride in himself with his straight back, quick wit, and ironed and clean clothes. He would never walk around with pants on inside out or food spilled down his shirt or drool falling down his chin onto the floor. He would never stand for someone else wiping him clean. Then I think about him actually dying and I don’t want that either. I want another conversation. I want another date night. I want him to play in the backyard with the kids or to cheer them on at a game. I want him to walk through the front door, turning the key himself, walking in with the smile I have loved for many years.  I want him to not be where he is or who he is now, but I can’t have the original back either. It is a waiting game. We know the ending, but not the timeframe or exactly how bad it will get. Every time I think we are at a place so much harder than before, it gets even worse.

Each time I visit him, I am exhausted, depressed, lonely, sad and relieved he is at a place that takes care of him so much better than I ever could.

I am trying to keep our regular traditions up for the kids and I suppose for my own sanity. Moving forward. We got our tree at the same tree farm. But instead of the typical lights, the three of us wanted different things: Frances wanted white lights, Brad wanted multi-colored and I liked the ones we have had the past couple of years with red, green and white. So, I did what any stable Mom would do, I said “screw it” or something along those lines and put one strand of each on the tree. I can pretty much guarantee you there isn’t another tree lit like ours and I can also guarantee it won’t win any “best” awards. But I really don’t care. I actually kind of like it. Sort of a symbol of the way I feel: discombobulated and completely unorthodox.

While the kids and I were listening to Christmas music and putting ornaments on our unique tree, Brad stopped, sat on the couch, and just looked at the tree. When I asked him if he was ok, his reply: “We should have brought Dad home to help with the tree. He should be here.”  And he was right. He should be here. He should be helping with the decorations and sipping eggnog and sitting with me after the kids go to bed, silently leaning into each other as we lay together on the couch in the glow of the lights. He should be running to the store for last minute ingredients and attending band concerts and helping with homework and sneaking around to hide the mistletoe so I will end up standing under it so he could grab a kiss. He should be watching A Christmas Story with us for the 100th time and laughing out loud in that way he did, where he almost couldn’t stop.  He should be here, with us, but that will never be again and it hurts. Like Hell. But I can’t wallow in this immeasurable grief because I have to get up, do the laundry, fix some dinner, go grocery shopping, visit Jim, follow up with doctor appointments, put up the decorations, get all the kids gifts together (plus others on our lists) and somewhere in there get a shower and act like I’m ok so my kids can have a decent holiday since their summer and fall have pretty much revolved around one medical emergency after another with their Dad. After all, this isn’t about me. This is about a man who is leaving his children when he desperately doesn’t want to. It is about two amazing kids losing their father. It is about moving ahead while searching for the right way to let go of the past and hold on to it at the same time.

Jim opening a gift from my parents. Dec 2015.

Jim opening a gift from my parents. Dec 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 (26)

And the Grief Goes On

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Visiting Jim at his new home. October 2015.

There is a time in everyone’s life where you learn who you are and transform into the person you were always meant to be. Welcome to my time.

I am struggling. It has snuck up on me during a period I assumed would be easier and I would be stronger and more prepared. It seems I am never sufficiently equipped anymore. Jim is no longer living in our home which means I am besieged with new emotions I didn’t see coming. There is a new level of grief. When Jim first moved out, there was relief. The kids and I felt like we could breathe and relax a little. But over the course of the two and a half months Jim has been gone, I have started grieving his absence. As with each loss of him over the past few years, I grieve all over again. Although we no longer have to worry about constantly watching him or finding the things he put in strange places or something taken apart to never be put back together again, there is an absence that is felt and is suffocating.   He is gone from our daily lives. There is no Jim with us unless we visit him. We cannot call or text. Even the dog is missing him and the many walks they had daily. Yes, Jim is still “alive” as far as a living and breathing person, but he is not alive in our home. He is alive in my heart, but even that hurts because it is not the same love or the same relationship it once was. I grieve, but it is a grief that will continue without any closure for an undisclosed amount of time. Stop and re-read that sentence.

Over the course of the past two weeks Jim has been to the ER three times and to the urologist 3 times. Three days ago, he was admitted to the hospital for a two night stay while they fed him an intravenous antibiotic. It seems UTI’s are very common when you have a catheter put in and taken out and then put back in. He is unable to tell us what is wrong, so we must constantly guess. Finally, with a high temp, it was time to head back to the hospital. But I wasn’t able to go when they were taking him. I was working and then I had commitments that could not be changed. For the first time, I did not drop everything and run to be with him. I did not sit with him in the ER. I was not there to explain to him what was going on and tell him where he was. I made a decision and cut the cord. Guilt isn’t really the correct word. Sadness at recognizing this life is becoming so commonplace for us the kids weren’t even surprised when I told them he was in the hospital. I told few people. It seems after you do this a few times, it becomes redundant and is there really a reason to let everyone you know in on the latest medical crisis when so many more seem to be headed our way?

Yep. I’m depressed. My house is a mess. My engine light came on and I have yet to be able to take it by to figure out what is wrong. Hopefully I get it by the shop before I end up by the side of the road.  I have a stack of paperwork to sort through that may or may not get done in the next few days. I have 3 Halloween decorations up and no costume for Brad let alone a pumpkin to carve. But I do have candy. And I do have a plethora of friends who love us and care about us and if I should come to my senses and ask them for help they will do whatever they can. That is a most difficult thing to do. But, when you are in the depths of grieving a person who is still alive, nothing makes sense and you don’t always do the thing that should be done. Sometimes you can’t put enough energy into a full congruous thought process to know what you need or when you need it. So you just do the best you can at that very moment. There is no extra space in my emotional realm to plan ahead or be a good friend right now. I am struggling to be a decent Mom and a rational, thoughtful caregiver from a separate space. A separate mindset.

I think I am halfway ok. I think recognizing I am not doing so hot is a huge sign of a healthy mind. I think knowing I am down and knowing I have a valid reason for being down is also part of this healing process. I think learning to live in the exact moment I am living in takes a strength and maturity I haven’t possessed before. I am not the “I can do it all” person anymore. Maybe one day I will be again but for now, I must learn to accept my shortcomings in comparison to my previous self. It’s ok to celebrate accomplishing something as simple as fixing dinner AND doing a load of laundry in the same day. It’s a bonus if I also put away the laundry or possibly pay a bill. I cannot even fathom being the multi-tasker, over-achiever I once was. I cannot expect to live a life as if nothing catastrophic is happening. I am losing my spouse. I have lost my spouse. My children are losing their father. An AMAZING father. They have lost their father. I am a single parent. I am morphing and changing and it takes time and understanding.

Understanding. I used to worry about my friends disappearing. I still do but I also can’t take someone being my friend for the wrong reasons. If they are tired of our constant tragedy, it’s ok to walk away. I get it. I am tired too. Don’t stay to save face. I have come to realize I actually only want and need those who truly are able to be present for this heartbreaking journey. The others can do the best they can with whatever situation they have going on and it’s all right. I understand. We all have a story and sometimes we can deal with one better than another. Right at this juncture in my life, I must re-direct myself to whittle down my priorities.

It has been a long time coming but I think I have gotten out my big girl panties and have at least thought about putting them on. It isn’t easy, but I am starting to be good to myself and love myself. I haven’t for a long time and that is where I must begin. I am going to plan a break, a time away, by myself, to re-cover and rejuvenate my mind and my spirit. And then I will come back and continue on with the hurt and the heartache and the daily dilemmas. I will get through this awfulness, only with the help of so many wonderful friends and my parents. They are my saving grace….the smallest gestures quickly add up to a net that catches me and throws me back on my feet.  I won’t like it but I will keep moving forward, albeit slowly and without as much pizazz. And one day I will look back and be amazed at the love and support our family was given and wonder how I ever survived.

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)

Phantom Lover

the-worst-feeling-isnt-being-lonely-but-being-forgotten-by-someone-you-cant-forget-quote-1

I’m in love with a man who cannot love me back. I think of him all day, every day of every week of every month. From my first moments lying in bed in the morning until my last tired thoughts trying to fall asleep late in the evening.

I long to call him with each new idea, thought and life event that transpires. I want to share each amazing feat Frances and Brad conquer. I want to call and ask him what he wants for dinner or if he can sneak away and grab some lunch. I want to hear about his day and carry on a conversation sharing our thoughts and desires. I want to laugh together at something funny on TV or sit in the darkness of a movie theater, jumping at the scene on the screen or wiping away tears as our hearts are tugged by the story unfolding before our eyes. I want to feel the excitement of catching up on episodes missed or planning an evening without the kids. I want to know he is thinking of me, as I think of him. But he is not mine. He is in a different place, with another life and is not interested in my fantasy world that includes him because his world does not include me.

I cannot have him. I dream of him. I yearn to call and ask if he would join me for a weekend away. Just the two of us, locked away in a cabin in the woods or lazily reading books while listening to ocean waves crash feet away.  Would I be satisfied with just a weekend or would I be left in an even larger state of isolation and frustration?  I have lost hope for a note in his handwriting, confessing how much I mean to him and how he can’t stop thinking of me. Does he? Does he think of me? Does he long for my touch as I long for his?

I am a woman with unrequited love.

There are no date nights. There is no lounging in bed too long. There are no passionate kisses and gentle touches. There are no arguments or the fun that comes with making up. There are no loving gazes, no words unspoken with just a glance. No plans for a future together or shared dreams to make come true.

Just me, recalling the way his hand touched my back as we walked through an entryway. Just me, wishing we could stroll arm in arm, chatting and feeling the warmth of friendship and love all rolled into one.  Just me, wondering how I will ever get past this loneliness and longing.

Although I ache for him, thinking of him constantly and wanting to share each detail of my day, he is not mine. He belongs to another. I am just a fleeting thought, someone to ponder about whenever I pop into his mind. Daily? Weekly? Surely when something triggers a reminder of me. There are fleeting conversations, but with each one I am left wanting more. I need more and he cannot give me more.

I instinctively pick up the phone to share something and realize the emptiness of that dial tone. When I am angry or sad I want to reach out to him and hear his voice. He calms me like no other. When something wonderful happens, it is him I want to tell first. I want him to grab me in his arms, pulling me into his chest, smelling his scent, feeling his strong arms holding me tight, taking all the anger away and reminding me I am special and loved and safe. I need him to make me feel beautiful again. I need him to make me feel smart and funny and worthy.

There are no cards. No flowers. No surprises. No late night intimate chats. No snuggles on the couch. No breakfasts in bed. Nothing but the connection I feel, the hunger I have, the dreams that will never come true.  I love someone who is a ghost.

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)

Nap Time

Screen Shot 2015-10-05 at 11.33.22 PMI have nothing. Nothing to say. Nothing to feel. Nothing to do. I am numb. I am going through motions and I am doing the obligatory foot in front of another, but the reality is I am dazed, confused and paralyzed.

I went to visit Jim two weeks ago. He got agitated, which I quickly learned meant he needed to go to the bathroom. So, I took him to the restroom and he pulled down his pants and WHAM!! Adult diapers. On. My. Husband.

The next week, I stopped by to visit. I couldn’t find him so I asked the two people working his unit where he was. They said he was just there. So, they start looking room by room. After a few minutes, Jim is found. In a room with the door closed, with a person in their bed and Jim in that persons shorts and one sock and nothing else. Jim’s clothes and shoes and socks were on the floor. And the shorts were wet. And Jim had no clue he was in the wrong room or wasn’t dressed.

So, I got nothing. No words of wisdom. No fancy antidotes or metaphors. I have a new me. Being a shocked wife. Being a mom of two children, taking them to visit their father in a home with people 20 – 30 years older and him not showing much emotion or interest. And them laughing at the residents stealing walkers from each other and repeating themselves and seeing a world that none of their peers witness. There isn’t an ounce of perspective that has prepared me to become the judge, jury, executor, pardoner, appeals attorney and bailiff. I have nothing, yet I am everything. To Jim. To our kids. And to myself. There is no person to keep me straight. To help with my parenting decisions, my financial decisions, my daily decisions and my personal decisions. It is all on me. I have nothing to help with the loneliness. The isolation. Really. I am my own island, mostly deserted, and I am afraid that I am slowly getting used to it.

Not really what I signed up for but nothing a nap can’t help.

I am ashamed. Ashamed that I have taken more naps in the past two months than I have in the past 10 years. I am ashamed that my paint is peeling off my house. I am ashamed that I pretty much didn’t wear make up through the entire summer and because I didn’t, I chose to hibernate.I am ashamed I have missed countless birthday and reasons to celebrate or support others. I am ashamed I have not been able to master the clutter in my home for months now. I am ashamed my children have had to fix their own meals many times throughout the past several months.  I am ashamed that I have realized only too late that there is no more time to take the videos or pictures or have conversations with Jim that should have been done. I thought I had but there will never be enough to overcome the new memories that are taking over. Memories of the new Jim.

He is moving on. Without me. He is progressing and losing his ability to speak, write or communicate. I have lost him while he is living. I am alone in our bedroom. I am alone late at night. I am alone in my thoughts and feelings and emotions. I am alone at social gatherings and dinner parties and ball games. I miss him so and at the same time I want nothing more than to move on. I want to leave the pain and agony behind. What an awful spouse I am to even think this. I long for him and all he was even as I wish I could just move away to a new place and start over, leaving the hurt and worry behind. I can’t. I can’t leave him, our kids or the friends who have surrounded us with love.

Maybe I will go away for a week and call it even. Maybe I will wait until the kids are out of the house and I will disappear into the sunset. Maybe I will just stay where I am and dream for a different ending. Maybe I will do a lot of things but certainly not while I am taking a ridiculous amount of naps.

Jim and I never had the perfect marriage. But we always had each other and the knowledge that we were in this for the long haul. We knew that we wouldn’t leave. I am not leaving, but I am not with him either. He is five minutes away and I am struggling to understand what has happened, where I am going, what I am doing and what I should be doing. Nothing about this situation is traversable with ease, yet I must navigate carefully, so I don’t one day look back and regret any decisions, impact the kids negatively, cause stress or harm to Jim, and most of all, cause unforeseen and irrevocable damage.

I am constantly wondering and second guessing….  should I make the kids go see Jim? Let them decided? Bring him home for a visit? Leave him be? Bring him to our favorite places? How much should I try to keep in his world while he is moving on to another place without us? I struggle each day and when I can’t move past whatever it is I am fretting over I usually decide to take a nap. And when I awake, I realize I haven’t gotten the myriad of tasks done that I should have, now I am an hour behind on whatever it is I could have been doing and I berate myself for not doing what needed to be done. But naps are sooooo good. They let me forget my problems, even if only for 30 minutes.

My new self  isn’t much different from my old self: Worrying about the kids, about Jim, about the future, the past mistakes, the present mistakes, and how to keep from making futures mistakes. But now I tend to shut down. Take a nap and come back to it another day. Now I can add in where I  worry about all the stuff I am not doing because I am taking a nap.

I am better than this. Jim and the kids deserve better than this. I will be a stronger. One day.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (19)

This is an Important Statement for you to Read and Share

Jim and Brad playing some ball at his new home.

Jim and Brad playing some ball at his new home.

I have wanted to write this piece for a while but I haven’t wanted to offend anyone or hurt anyone or cause hard feelings. So, I write this with the understanding I am not trying to call anyone out for offering us suggestions or trying to help our family. Just the opposite. I am writing this particular piece in the hopes of EVERYONE reading it and understanding the gap and the disparity of assistance for many, many families in need of help. If you care at all about our society as a whole, you will read what I am about to write.

First of all, thank you to everyone who has sent in suggestions. I appreciate you taking the time and making the effort and in some cases, doing quite a bit of research. Now, let me speak freely without the worry of being taken the wrong way.

Stop. Stop telling me that I just need to make one more phone call or fill out one more form.

I have. I have filled out every form known to man. I have made call after call after call. Many times while Jim sat helplessly, just feet away, listening to me repeat our story, his story. His burdens on our family and feeling the guilt he so wanted to avoid are now seared into my mind as something I threw in his face over and over while trying to find the answer that has alluded us and continues to do so.  I have gone online and researched. I have spent hours and hours and hours (you really wouldn’t believe) just trying to find an answer. I think I have worked harder and spent more time, energy and filled out more forms than I did in all of my years of college combined.  I have always believed in my heart that we would have help. I have always believed that when the time came, Jim would be taken care of and I know he thought the same. We both assumed  I would just keep working and it would all work itself out. We were wrong, wrong, wrong.

Jim is 53 years old and a 23 year veteran of the US Air Force.

Our children are 11 and 14.

We are middle class.

Jim had Tricare Health Insurance benefits when he retired from the Air Force, which also covers myself and our children.

After being out of work six months due to his Early Onset Alzheimer’s Disease disability, Jim applied for and obtained SSDI (Social Security Disability Income) This is a program Jim paid into with every paycheck he received starting at the age of 14. It does not come close to replacing the income he was earning while working, but it most certainly keeps our family afloat.

After two years of SSDI, Jim was automatically switched from Tricare to Medicare. Medicare is a health insurance program. It is not a program that provides Long Term Care for people with Alzheimer’s Disease. It covers doctor visits and hospital stays, just like any other health insurance program.

I work out of our home as an independent contractor. I have also just started a part time job this week in the hopes of helping with Jim’s care.

I applied for Medicaid for Jim in July. You cannot apply until you need this program. So, even though we knew the day Jim was diagnosed many years ago we would eventually be applying it was only when he needed more help than I could provide that we could fill out the mound of paperwork, meet with Social Service workers and start the process. This is something I strongly believe needs to be addressed and changed. But, I will save that tirade for another day. We were turned down for Medicaid. Not because of our income, but because Jim does not qualify medically. He does not need “skilled nursing”. He does not need someone to monitor his blood pressure or blood sugar. I promise…I am not making this up.

We have gone to the Veterans Administration Hospital in Hampton, Virginia many times.  I was told each time there was nothing to help us. His disability is not service related and he is not 65 and he makes more that $26,000 a year. I went back and I called. I have been desperate trying to find help. I have sat and cried, feeling like a forsaken child of the country I have always loved and been proud to call mine. Nothing. No help to cover his care. We did qualify for the 30 day respite from the VA this summer which was a Godsend. For this, I am very grateful.

I couldn’t understand why others making suggestions of different programs he will or he should qualify for has bothered me so much. I know that each person who writes to tell me that the VA will help or Medicare will help or Medicaid covers their uncles care means well. I know when you write with your stories and your suggestions, you are trying to help. Unless you can actually make a program start covering Jim’s care, please do not tell me what I am doing wrong anymore. That is how I take it. I shouldn’t, but I do.

Recently I was talking to a good friend about this. I told her I understood people were trying to help because they care and they want to help our family but with each sentence saying there is help out there if I only would do this one thing, I was hurting more and more. I couldn’t figure out why. Why would it bother me when I know I had done everything and I know their intentions were good and genuine?

“Because it is a sore, raw subject for you Karen. You still feel like you have missed something and you also feel like there should be and is a program to help if you can only find it. Each message reminds you that the system is failing your family and it makes you feel like you are too.”

And there it is. I struggled to understand something that she layed out before me to make perfect sense.

I agree with all of you: There should be help. There shouldn’t be a need to have a charity page asking for donations from everyone under the sun to take care of Jim. It was a most difficult decision to do so, but I cannot take care of him the way he deserves. I cannot change his diaper and help him shower and help him all day long with finding something to occupy himself. I was failing him and our family. But this is not anything that qualifies for help. Needing assistance with eating or hygiene does not entitle you to receive help with your loved one. We don’t fit into a black and white box and therefore there are no possibilities of going outside the box to use common sense to help. Either you fit the criteria or you don’t. We don’t.

I have met with our State Senator, staff representing our US Senator, social services, Medicare and Medicaid representatives and VA representatives. Nothing yet. There is a slight hope we may receive some benefits from the VA, but my attorney (who completely rocks) and a local reporter and our US Senator haven’t been able to make it happen yet. But, you never know. I am still optimistic, but now with a much clearer sense of probability.

So please understand I have put more effort, energy, time and hope into finding this solution that must be out there somewhere than I have put into anything else in my life. It is like pouring salt on a wound when you tell me I haven’t done what I have been trying so very hard to do for months now.

I appreciate your belief in our system, as I have always had your same beliefs, but sometimes, we are all wrong. Please keep writing me and if you genuinely have something that you have found that can help our family, please share as I am hoping there really is assistance available. Otherwise, please start a conversation with your friends and neighbors. You may be surprised to find they have been through this same process. And if you are so inclined, please start advocating for a change. It will be too late for our family, but others coming behind us, which could be your family, need us to stand up and demand all of our citizens be cared for and treated with respect and dignity. No one should lose their homes, their life savings or their own health in a  land that prides itself on prosperity.

Jim, Frances and Brad. April 7, 2012. Jim's 50th birthday.

Jim, Frances and Brad. April 7, 2012. Jim’s 50th birthday.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (44)

Happy Today

Brad, Jim and Frances celebrating Jim's 53rd birthday. April 2015.

Brad, Jim and Frances celebrating Jim’s 53rd birthday. April 2015.

It sounds so easy. Take your loved one to a place that promises to watch them and care for them and allows you to go home and relax and focus on other things. How difficult is something so needed and so good?

We were given a 30 day respite through the VA this month. I was elated. The kids and I would be able to do the whole back to school routine, we would get to go to family camp for the fifth year, we would have time to get stuff done around the house (Ok, now you know I was really dreaming) and we would get to just breathe a little.

If you have never been to an assisted living type facility before, you have no clue what I am about to tell you, and it will most likely sound like something that should be shut down. But, if you have, you know what I am about to write.

You know the absolute guilt and heartache that come with the very first step through the doors. The smell of urine permeates through your whole body and clings to your clothes. The shock of seeing person after person almost in a comatose state either in a wheelchair or a bed. The horror of thinking how awful this place is and that you should be turning around and running back through the doors….yet you stay. You unpack clothes and try to seem happy about all of this. You see the dirt, the grime, the locks on everything, , the coded doors, the list of simple activities you can not believe that your husband would be happy to sit through….. It reminds you of a horror film but you are living it and you don’t leave. Well you do leave….alone.

You leave and cry and cry all the way home. The perfect sad song comes on the radio and you turn it up and cry even harder.

When your children go to visit the next day, you cringe again as you walk through the doors and see it all anew through their eyes. The moans from a bed as you pass, the loud daytime TV shows, the medicine cart, the food cart, the alarm going off when the door is opened incorrectly, the wandering, lost souls down each hallway. And they tell you what you already knew: Dad should not be here. This place is awful. We cannot leave him here! Yet, he remains and you return to the home you shared and the bed you no longer share. And you must kick into super awesome Mom mode. Think fast even though you agree with what they say.

“Was Daddy happy?”

“Yes.”

“Did he ask to come home?”

“No”

“Did he say he didn’t belong there?”

“No”

“Did he ask when he could leave or seem sad when we were leaving?”

“No”

“Well, we have to understand that Dad is content and likes where he is. Maybe he wouldn’t have a year ago or we wouldn’t want to stay there, but where he is right now mentally is what we have to think about. And he is fine. They are nice, they are looking out for him, he is laughing and we are getting a break.”

And there is the click. The change. The acceptance, the understanding that no 11 year old or 14 year old should have to fathom until they are old and grey themselves.

Jim is happy. He has a routine. He has activities. He has people to talk to.The staff watch out for him and know his signs.  He is satisfied in his own little world and is happy we can join him sometimes but has not asked once to come home. He has called to tell me he misses me but he doesn’t ask when he is leaving. He hugs me and I hear from the staff he talks about me all the time (and the dog and the kids) but he is contented to just be where he is. And where he is is a locked unit an hour away with patients much older and much further along. But he has progressed enough with the disease that none of this connects in his riddled brain any longer. And it is sad. It is sad to leave him. It is sad to know he accepts this new home (albeit temporary) and it is sad to witness his behaviors that mirror the other patients who don’t seem to acknowledge the world around them.

Did he really go into someone else’s room and take their photo album and put it in his room? Did he really get agitated because he was outside too long? Did he really not want to participate in a group activity? His changes cause our changes. His decline is our decline.

This short reprieve has been so, so wonderful for the kids and I on just about every level and in every aspect imaginable. The laughter and the carefree conversations make us acutely aware of how tremendously stressed we were without even realizing it. To acknowledge this is hard. It feels as if I am somehow betraying the love of my life. But when you are living your life, the best thing you can do is be honest about what is happening, what eases your burdens, what brings a smile to your face and what causes the stresses to disappear.

Life doesn’t get magically perfect because Jim is out of the house. I still worry a great deal about him, about finances, about the kids, about all of the things I worried about before but without having to keep a constant watch over him. Without the children fretting about him getting agitated or misplacing something they need or all of us keeping an eye and ear on guard for whatever is about to happen next.

None of this is easy. None of this has a good answer or a happy ending.

I spoke with my Dad tonight and we were discussing finances and planning Jim’s care (a typical conversation these days) and he asked me, “What about a year from now?”

And for the first time in my life I really understood myself in a clear and concise way. I told him ,”I can barely think about the rest of today or tomorrow. The most I am going to hope to even fathom thinking about and planning for would be six months from now. There is no way a full year would ever come into my radar.”

I am so grateful for this short break from the daily task of Jim’s care and I do wonder what we will do in a few  weeks. But I cannot dwell on it and ruin the time we have right now. I am good. The kids are good. Jim is good. And that is all I can ask for today.

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

What do YOU really think?

Screen Shot 2015-08-19 at 12.24.28 AMHow many drive the car they drive to impress others? Or wear certain clothes to attract attention? Or cut their hair just to entice a mate? Who in this world bases each action or decision on the reaction or perceived reaction from others?

And here I am, under an unimaginable amount of stress, grief and pressure to figure out what to do with Jim and unfortunately worrying about what others will think. Not just strangers, but people who mean the most to me…Frances and Brad. Their current thoughts on the subject and my worry about their thoughts years from now weigh heavily on my mind.

Home care? Institution? Just me and the kids?

I am inclined one way but then I envision having to live with that decision. So I start pulling toward the other solution. Not long after, I think of the original plan. It never, ever ends. Ultimately, my decision really won’t be my decision and I will probably laugh at all of the time and energy I have put into this. The decision will strictly be a financial one not a practical one. And that is really out of my hands.

I find myself justifying so many things with almost each conversation I have.

Earlier this week I chatted with a neighbor. I caught myself justifying. Not long after, I spoke with a casual friend who asked about Jim. Again, I was almost embarrassed as I heard myself repeating the same justifications.

Right now Jim is in a 30 day respite program we have been granted through the Veterans Administration. Wow! What a difference in our home. What a change in me and in the kids. Yet, I have felt the need to justify this welcome reprieve.

But to tell the story of relief is to tell of the burden and the stress and the unhappiness of having Jim at home. Who would ever want to acknowledge that life is better without their loved one with them? Certainly not me and not our kids. But it is what it is. And as I write this, my lungs almost collapse in shock and sadness. What kind of monster am I for feeling this way? How can I be a good wife, a good caregiver, a good person for thinking this, let alone saying it out loud? Me. I am. And I am tired of worrying what others think. Unless you have been taking care of a person with YOUNGER ONSET Alzheimer’s Disease WITH children at home, you are not allowed to pass judgment. You are not allowed to even think that you would do this differently. You really don’t know and could never comprehend what you would do unless you are actually living this very life with the exact same decisions and circumstances. Do I sound angry? I am not. Actually, right this very moment, I am happy. For the first time in a long time, I can breathe and I can focus on being a mom and nothing else (sort of) and it has been so nice. The kids and I have had many relaxing nights, fun days and times of reflective honesty. Yes, before Jim’s disease took hold, our family would have done these things with him and we would have been complete and whole. We are broken and the kids and I need to be able to move on. It is so difficult to try to move on while Jim is still with us. Yet, I don’t really want him to not be with us. Obviously it isn’t my choice whether he is here mentally. It is almost some kind of scientific wonder how he can be “here” physically, but he is no longer “here” mentally. Sometimes he is able to be part of a conversation or have a funny input or something relevant to what we are discussing, but let’s face it, he isn’t capable of being a contributor to decisions and barely can recall what was just discussed. The day to day change one way and then another is amazing if you stop long enough to digest it all. It does not please me to acknowledge these things. He is progressing. We are progressing. Life is hard. Life is complicated.

I often am forced to think back to conversations Jim and I had as he was in the process of getting diagnosed. We had many heart to hearts and he was always very adamant about the kids coming first. I know he had no clue the financial strain this would all have, but he was very clear on what he expected from me: taking care of Frances and Brad.

At this point, I just want to be able to be a Mom. Being a friend, a worker, a neighbor, a wife…all pale. I don’t have it in me to do all of the above as usual. I can only focus on a single point at any given time. Right now it is taking care of Frances and Brad as best I can under these circumstances. Then it is working on care for Jim. Wow. The paperwork and stress is indescribable.

I see Jim. He is happy in the respite. He is getting attention and has activities. He doesn’t have a lot of commotion. He hasn’t asked to come home. He hasn’t said he doesn’t belong there. Bittersweet. I am happy he is happy but his contentedness is a reminder of how far along he has progressed with this disease and it makes me so very sad.

Every time I see someone and tell them about Jim being in respite and trying to decide what is best for him, I find myself trying to justify and explain and to make sure they understand. Really? Why should I care? None of them are going through this. So do I really need to explain myself and what I feel is best for our children? Isn’t it apparent that everything I do is to make sure the kids are ok? Don’t they know that Jim and I had this conversation many moons ago and it is also his wish to put the kids first? Isn’t it obvious?

No, no. I feel the constant need to justify and explain to people who could not possibly comprehend the decisions and the magnitude of those decisions on the future of our family.

Yet, with all of my resolve to be strong and stick to my decisions from so long ago in dark, intimate times with Jim, leaving his care to someone else causes great stress and guilt. How could I ever be without him willingly? What kind of selfish heathen am I? How can I leave him to the trust of others to make sure he is clean and brushes his teeth and puts on clean clothes and stays active? Do they watch to make sure he doesn’t take the tooth brush and tries to clean the sink? Are they making sure he is washing his hair? Do they check to see if he is washing everything correctly?

The torture I feel is immeasurable. There will come a day that I will sit by myself and reflect, gazing at a beautiful scene and wonder how I did all I have done. But in the meantime, I struggle to find a foothold on what the correct choice is.  I struggle because I wonder how it will be for me and the kids or because of what others will think? Or because I will lose everything financially? Do I need a retirement? Do I need savings? Isn’t it better for me to have a stable, happy home for my children? But, isn’t it better for them to participate in the care of their father? Won’t that just grow character for them?  What if he gets violent again? Won’t it be my fault since I knew this was a possibility? Love hurts and love cuts to the very core.

Frances and Brad rock jumping at Belle Isle VA. August 2015

Frances and Brad rock jumping at Belle Isle VA. August 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 (18)

Survival of the Fittest

Jim, Frances and Brad enjoying skipping stones on the Maury River in Virginia. June 2015.

Jim, Frances and Brad enjoying skipping stones on the Maury River in Virginia. June 2015.

It has been 6 long years since we first started figuring out something was “wrong” with Jim. To some, this will seem a very minuscule amount of time. For us lucky ones, living and enduring the torture, it will seem an endless amount of time.

When a person loses a loved one, they are forgiven their lapses of judgement. If they forget to say “thank you” or don’t have their home kept up or they don’t seem themselves…it is forgiven and they are encouraged to keep moving forward. If they get too drunk too often, they are forgiven. If they seem short-tempered or completely out of it…they are forgiven.

But I ask myself daily how much time and indiscretion should I be allowed? Will I be forgiven for being a louse for 20 years? When is enough enough?

Jim is not dead. Jim is not alive; not in the sense of who he was, how he once lived and his being. His great attitude and his constant desire to continue to help is amazing. His sense of humor still shows at times and takes us all by such surprise, it is a present wrapped in a perfect package. So, he lives, but as a new entity in our world. One constantly changing and now needing more and more help. I am so grateful for his fantastic way, his attitude blesses us even as his mind fails him more and more. I grieve him. I have lost him on so many levels, so many times and our children have grieved with me. Our friends have cried with me. Jim has cried. He is losing many cognitive abilities.  Almost daily something new disappears. Handwriting. Speech. Dressing. Hygiene. Emotions. I stand by helplessly beholding the changes in him, yet missing the strength I would normally steel from him. I no longer have his support, his guidance, his assistance with the kids, the house, with finances, with life….yet, I am told all of my shortcomings are understandable and I am encouraged to drink more, speak freely, be the woman who has lost someone, let myself go and suffer the pain….yet I wonder how long can I sustain this? How long am I allowed to be grieving, to be less than I should and can be?

I am better than the person I am right now, yet I cannot manage to find my path to ME. The me Jim helped me become. The me WE were. I am unable to concede I must figure out who I am alone, with him sitting by my side, while searching for and needing the me I must become without him. The way I miss him is still raw, though I have become more accustomed to being the sole “adult” in our home.

The road I travel at the moment is a most treacherous one. I can slip and become a lost soul that will somehow be forgiven. I have an excuse to be less of a mom. Less of a wife. Less of a woman. Should I succumb to the darkness the lurks each day, it will be said I was a good person, but it was all just too much for me. There will be excuses to explain my fall. But I, I, do not accept those excuses. I do not accept the opening to allow myself to be someone I know I would abhor under normal circumstances. I am fighting not to lose who I should be to hard times, difficult circumstances and a pain that could kill a weaker soul.

I face my demons and my struggles each hour of each day. I struggle to make the right decisions solitarily. I hesitate to move onward while holding the hand of the man who pushes me forward as he holds me back. The constant metaphors in my life shout out to me constantly. I never know if I am making the right decision or if I am not making a decision I should be making or if I am just failing our family, one choice at a time.

I know Jim’s disease and decline and eventual death are NOT my fault. (Although there are times I have survivors guilt, but that is a whole different chat) But the effect of everything relating to our journey lies squarely on my shoulders. There is not enough beer in this world to lesson that burden. The fact my children witness their father dying a little more each day does not slip past my view. The fact I am responsible for not only their physical wellbeing, but their current mental health and their future mental health and their daily meals and their education and the normal parental scope of dealing with life in the adolescent years and money issues and friendship issues and something as minor as what to wear and who isn’t speaking to me and who didn’t do something and I really have to clean my room and do the dishes NOW???? There are times I just want to walk away. I just want to disappear into the night. But I have nowhere to go. There is nowhere else I would rather be. I want to be here with the two people on this earth who think I matter, who they look to each and every day to love them and make them feel as if the world doesn’t completely suck. It is hard to see when immersed in the trenches, but when I am really downtrodden and at a low of the low points… somehow I am able to see the miracle of the love my children and I share. The closeness, the stories, the history and the promised future. I can see the need they have for me to be here, even if I don’t really feel like it. Even if I am hurting in my adult way of missing a spouse and partner. They are missing a Dad, a parent, a confidant. It is unacceptable for me to put my own needs ahead of theirs for too long. Yes, 6 years is starting to feel like a very, very long time. But our journey has no end. Even when Jim is no longer with us, we will still be alone, without him. We will struggle to recall his stories and keep his memory alive. The trick is to start this all while he is still living, without allowing the weirdness and the emptiness to keep us from grieving. We will mourn, and we will cry and share our stories and we will live in a holding pattern for as long as we can. At some point, we will have to let go. I don’t know when that will come. I don’t know if I can manage that long. I hope I can. This is a most difficult path and a most painful journey. I am not always sure I will outlast the fountainhead. If I don’t, my children will have learned the most valuable lesson of all…survival of the fittest.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (14)

Battles Within

Enjoying Chincoteague Island and thankful for The Refuge Inn! Mother's Day 2015.

Enjoying Chincoteague Island and thankful for The Refuge Inn! Mother’s Day 2015.

It has been time for a new post for quite a while and I have written many in my mind. But sitting down to express my thoughts and feelings hasn’t been able to happen, for many reasons.

The first being I have been down. DOWN. As Jim declines, I decline. At some point,  I have to pull myself out of whatever hole I am in, even if he can’t. Without his help. Without his support or his belief in me. Without any communication about such daring escapades. Without the caring gestures and the simple pleasure of knowing he cares and is by my side. Mentally AND physically alone. It is only recently I have come to realize that dealing with one part, say the mental absence, was doable for a while. But then, there is the nonexistent physical connection as well. (Not just sex, but just a simple arm around my shoulders or hand placed at the small of my back as we enter a room….) The two combined equate the ending of our marriage as we knew it, as we lived it, as we dreamed it. Without either the physical or emotional connection to sustain us, what is left?

I feel as if I am a character in an old silent movie, teetering precariously on a steel beam high above the city, with my arms flailing, trying to keep balanced as my body contorts to whatever way my instability throws me while trying desperately to keep steady enough not to fall to my impending death, far, far, below. It is a symbol of the doom I seem to carry with me, even as I try so hard to focus on all the good that surrounds us daily. I mean, let’s be honest, I have much more on the positive side than the negative side happening in my life. It just seems that one, teeny, tiny negative somehow outweighs all of the positives and makes it beyond difficult to ignore or somehow unable to focus on the good stuff enough to keep myself happy and content.

I have been busy. Busy at very specific times. There have been times I have neglected even the most mundane tasks by deciding I couldn’t do anything besides roll over and go back to sleep after the kids went to school. NOT cool. AT ALL. So, after I would do this, once I was awake and functioning, I would go into some sort of immediate guilt trip of spending way too long in bed when I have many, many important things to get done. It has been a vicious cycle and an uphill battle. I am told not to beat myself up and to let myself have this time to heal and deal. It’s just not who I want to be. But only I can fight this battle. And I am winning. Not at the pace I would like, but still, I am winning. I am aware this is textbook depression. I have started seeing a therapist. I am aware this is normal. And it may be, but for me, it is not acceptable. Under any circumstances. See the sentence above about how many more positive things I have going for me.

As previously stated numerous times: JIM IS DECLINING. Yep. He isn’t getting better, but we knew this was our trajectory years ago. Years. You would think at some point this would all become old hat. Even so, our natural human nature is to always hope for something better to come down the pike. It is hard to keep this positive outlook and positive demeanor while understanding and acknowledging Jim is not getting better which means he is sliding closer and closer to things much worse.

Jim recently told me one of his last wishes (don’t worry, he isn’t THAT far along) was to go back to Chincoteague, VA. We used to go every year for Mother’s Day. Last year we missed it. So, this year, with the very kind help of The Refuge Inn, we were able to go and enjoy Mother’s Day weekend. Taking in the beautiful scenery of Chincoteague and Assateague Islands, Jim was like a little kid. Literally. We had such a memorable and fun time together as a family.

I had been worried if he would be able to do the customary bike ride, but it was no problem for him. I was worried if he would have trouble at the beach, but again, it was no trouble. Just the opposite. He was giddy, and happy and crashing into waves like he did years ago. It was such a wonderful site to behold.

Jim riding on Assateague Island, May 2015.

Jim riding on Assateague Island, May 2015.

We had a grand time. The kids enjoyed their dad and the island and just family down time. I enjoyed it all. And Jim fell into a memory that was familiar to him.

Back to reality. The night we returned: I was starting laundry and the kids were putting out the recycling and trash bins. Jim was confused. He wanted to figure out what was going on and what to help with. This is always such a treacherous place. I asked him to go upstairs and get his shower, but he knew we were all doing “chores” and things around the house. As I sorted the laundry, I heard the front door open and close. Not too long after, Frances came in and told me, “Dad just took off.”

Of course I was alarmed and worried and stopped what I was doing. She told me Brad had taken off after him. It was dark. I was immediately uncomfortable and worried. Frances and I started searching for them and calling out their names: loudly into the neighborhood. It seemed like ages, but in reality was probably only 5 minutes before she had located them. I was torn. Angry at him for doing this to his children and relieved to have found him. And sad. For many different reasons. We walked home in silence.

Later I asked him why he ran away like that. His answer was a simple and honest one: “I don’t want to be this person, I don’t want to not be able to do things and to keep getting worse and worse.” He had tried to run from the disease.

There was nothing else to discuss. I just sat with him and silently wondered why such a good man was being tormented over and over.

This whole life with Alzheimer’s Disease is a constant battle.

Battles with Medicare and finances.

Battles with emotions.

Battles with guilt and expectations.

Battles with loneliness.

Battles with internal desires.

Battles with commitments and timing.

Battles with anticipatory grief.

Battles with science and karma and helplessness.

I know I will be ok. I have to be, right? I have to for my kids. For my parents. For Jim. For my friends. For…me? Do I really care if I’m OK? At what costs will I make it through all of this and will I be able to look back and like the person I was and who I become? Will I still be a good Mom and a good friend? Will I continue to be a good caregiver to Jim (although some days I wonder if I am at my optimal and what he deserves).

Only time will tell. Not having been a patient person, I am learning to soak in the opportunities that come our way while recognizing it may take time before I can truly appreciate or understand the journey we have lived through.

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