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)

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)

A Day In The Life

img_5571Yesterday was just another day in the saga of our family. Saga. Our children’s childhood is a saga…

Morning started off great. Got Frances to school on time. Brad to the counselor a few minutes early. I answered some texts and e-mails. I had a counseling appointment. Work had told me I didn’t need to come in, so great, I could get a few things done around the house. Started another load of laundry. Called to make a hair appointment and there had been a cancellation.  She could fit me in at 1! Wow! That never happens. Get laundry on the line. Still need to work on a letter for The Garner Foundation and pay a couple of bills, but it is time to go. I make a mental list of the things I need to do when I get back.

While I am sitting with my hair in foils and with lots of chemicals amassed throughout my tangles, the phone rings. I don’t recognize the number so I let it go to voicemail. Then I listen.

This is the point in our movie where the background music goes from light and cheery to a slow, steady, darker melody.

Jim has been having some issues with his bladder being distended. The doctor had visited. An ultrasound had been performed. Meds ordered. The doctor believes it is a side effect from the medicine Jim is on to counteract his aggressiveness. He was barely able to walk and seemed to be in a lot of pain, although he wasn’t able to verbalize this clearly. They wanted me to come take him to the emergency room. I felt like the worst, uncaring person in the world saying I could not come right that minute, I was at the hairdresser. But as I sat there while the chemicals were rinsed out of my hair and as she cut a few inches of dead weight away, I felt my guilt lift. I was doing the best I could. I was getting my hair done and could not have known at that very moment they would call. This was a huge step for me….letting go of something I ultimately didn’t have control over. My earlier counseling appointment was coming in handy.

So, without eating lunch, I headed to see Jim. Mentally I am going through the evening schedule and deep down I know that Frances is going to miss softball practice. She missed both practices last week because she was sick. I was not looking forward to telling her she would miss again. In a surprise reaction, she was ok. I think she knew that Daddy being in the ER trumps practice. Luckily her coach understood as well. Another moment of realizing our kids are maturing and growing up. Either that or they are getting used to last minute changes to their schedule because I need to be there with Jim.

I changed him and got him to go to the bathroom. (I will purposefully leave details out in respect of his privacy) I took him to the closest ER. 3 hour minimum wait to get seen. I walk us back out to the van and start calling around. I take him to another ER and get seen in about an hour. As we sit in the waiting room, two different families are helping their children with homework. Another woman is over in the corner throwing up in a cup. I start gagging (one of the many reasons I am not a great caregiver) so I take Jim with me to the bathroom because I haven’t gone myself since I first got up many hours ago and I am tired of holding it.

Back to the waiting room. Jim falls asleep and starts to drool as he hunches over. They finally call us to the admittance nurse. She checks his temperature. Checks his blood pressure. Asks him how tall he is and how much he weighs. He just sits there without even registering she is talking to him. He is lethargic and cannot put an audible sentence together. I tell her (again) he has Alzheimer’s and can’t answer (always have to say these things IN FRONT of him). She asks me how to spell A-L-Z-H-E-I-M-E-R-‘-S. By now, I am over this. OVER all of it. Over the wait. Over the people in the waiting room. Over her lack of dementia knowledge while working in a medical setting. I do something I don’t do very often…post something on Facebook that isn’t the most positive. I just wasn’t mentally ready for this interruption into our schedule today. Back to the waiting room. Brad is home from school. I order him to work on his homework and take the dog for a walk. Then he is going over to a friends’ house whose Mom I left a message for. I hope someone will be home. Frances has a ride home from field hockey. I text her to call me as soon as she is home. The nurse calls us and as we get up to go to the back, my phone rings. It is Frances’ field hockey coach. Oh no. Please don’t let her be hurt. I answer, even though I am literally walking through the emergency room, guiding Jim and following and listening to the intake nurse.

“Hi. This is Frances’ coach and she is doing a great job playing field hockey and running cross country. We have been really happy about having her on the team. You know, tomorrow is a very important game for us and she was planning on running a 5k with cross country in their meet and then coming to play the field hockey game.”

“Yes, I know. I was going to give her a ride.”

“Well, I wanted to let you know I just met with her and told her she couldn’t do this. I don’t think she was very happy with my decision but with it being our biggest game, I don’t want her tired.”

We are now at the room and I am trying to comprehend what she is saying and what the nurse is asking us to do. Jim is hunched over in pain.

“Ummmm. Yes. Ahhh. Thank you for calling to tell me. I will discuss this with her tonight. Have you told the other girls who were going to do this?”

“Yes. They were fine. Frances didn’t say anything so I knew she was upset and I wanted you to hear my side of the story. If she goes to cross country, I will cut her from the team.”

They are giving me instructions to put on his gown. Did they say the opening to the front or the back? Leave his shirt on?

“Uhhh, ok. I will talk to her when I get home. Thank you again for calling.”

As we are waiting, a friend shows up with a breakfast bar (knowing me the way she does, she knows I haven’t eaten) Then my other friend calls and says Brad can come over. As I am starting to explain to her what is going on, the doctor comes in. I have to cut her off and go.

Jim needs a catheter.

So we wait a short time and they put in a catheter. 1500 cc’s of urine come out of that man. (I didn’t know it at the time: that is a lot of urine). The normal amount when you feel like you have to go is about 400.

Jim is still in pain. He is shaking and jerking and tries to get up. His coloring is pale. He listens to me and lays down without a fight. He holds my hand, and our friends’ hand, and does his best to keep us happy. He tells me he loves me. He smiles. He grimaces in pain. We ask for something to help his discomfort. They give him something.

No infection.

They change the bag to a smaller one that is taped to the inside of his leg and discharge him back to my care.

My friend has left and taken the kids to eat dinner and after I drop Jim back off, making sure he is fed and comfortable, I join them for 30 minutes, scarfing down some brisket and a beer.

Then on the way home, I call the friend who had watched Brad earlier in the day. She was concerned and relieved. She tells me Brad has a test tomorrow. Ughhh. I make a mental note to ask him some questions.

We get home and there is a load of laundry in the dryer, dishes in the sink, and phone calls and texts to return. I empty the dishwasher and fold the towels. Frances works on her homework. Brad gets his shower. I ask him those questions about European explorers and feel like I have actually done something important. Frances still needs to talk to me about the whole field hockey/cross country dilemma. I am starting to feel really tired. How do hospitals completely wipe you out, even though all you do is sit around?

Facebook has exploded. I meant to just rant about the intake nurse needing some Alzheimer’s education, but what I failed to realize is by informing everyone that Jim was at the Emergency Room, our friends stepped up. Offers of helping with the kids came pouring in and messages checking on Jim and checking on me were plentiful. I felt loved and cared for and supported. I felt that safety net underneath us. I felt like we were going to be all right, no matter what.

By now, it was way past bedtimes and Brad was making his bed. It was at that moment I realized I had forgotten to get in the sheets off the clothesline. They were wet already from the dew. So in the dryer they went and the dishes that were soaking in the sink, well, they stayed there until the morning.

But as I lay in bed, trying to fall asleep, all I could think about was going to bed with dirty dishes in the sink, the tax form I completely forgot to pick up, the conversation with Frances and her worry, thinking of Jim, hoping he didn’t pull out the catheter, remembering I needed to pay two bills I thought I would do after I had gotten my hair done and the last thing I remember is going through the numerous messages of love. I don’t know when I finally fell asleep, but at daybreak, I woke, before my alarm, which is highly unusual, and laid in bed, going back over in my mind all of the wonderful offers of help we had received the night before. I felt blessed and it was a great way to start the 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 (5)

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)

Alone

Frances, me and Brad getting ready to leave family camp. Aug 2015.

Frances, me and Brad getting ready to leave family camp. Aug 2015.

In the middle of the night I reached out, my legs stretching to a cooler feel of sheets only to find an empty bed. An empty space that was once filled by a warmth, comfort and security that will not be there again. And that is a sobering thought. How can my Jim, so handsome, so healthy, so capable not be around to make me feel whole again?

There is an empty space that seems to grow larger each day. Not just because I must now navigate everything solo…I was already doing this. The yard, the bills, meals, laundry, schedules, rides, chores, discipline, everything was already on my shoulders. Yet, there was something about him being here. Something about his smile, his aura. I am broken and I honestly know without a doubt I will never be fixed or whole again. There is not a possible way to fill the hole Jim has drilled into my soul. I must learn to accept my fate, but can I accept this fate for him or our children? It is a pain that is indescribable to sit idly by as he forgets our childrens’ names or doesn’t show interest in them, their activities or anything happening in the world around us. He does show me love…he kisses me when I leave him and he lights up when I visit. Our love story is still solid in his mind and for this I am grateful.

I am living a life that is actually on hold, swirling in a tornado, yet moving forward for those that need it. I believe I am stagnant in my mind, my emotions and my ability to be. Be me. Be a friend. Be an employee. Be a neighbor. Be an advocate. Be anything. I am lost. I am in a swirl that at times seems to stop, but ultimately I am thrust into a world that I am unable to master. For someone with the personality I have, this is very difficult.

Jim is happy. He is in a much better place. No smells. Lots of activities. Clean. Close to home. Home. Our Home. What is his HOME?

Where is my rescue? I know….I don’t have one. It is me. Me. It is my responsibility. But I must admit, I have never thought of owning a house ALONE. Or being a parent ALONE. Or planning vacations ALONE. Or dinners, lunches, breakfasts ALONE. Yep, movies, concerts, everything that I always took for granted Jim would be there  in a way that was easy and assuming is gone. Recent invites to parties, dinner gatherings, are for one. For me. I am now the plus one.

When Frances, Brad and I were at family camp this summer, there was a closing ceremony and a children’s group award ceremony. Who did I sit with? Remember….family camp. Husbands and wives. That was us. Yet now I sat alone. Alone in our bed. Alone in our van. Alone at our table. Alone. Yes, we have two awesome and amazing children, but they have plans and friends and activities. I am alone. And Jim is 5 minutes away, alone with his new friends. We are alone in our respective worlds, somehow missing who we once were yet unable to recapture it. Ever. And that makes me so sad. So very sad.

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

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)

A world without Jim?

 

Visiting Monticello,  July 2015.

Visiting Monticello,
July 2015.

Please, please, make all of this go away. The pain. The worry. The decisions. The agony of watching Jim slide away as we try to cling to him. As he tries to cling to himself.

It hurts. So bad. And I can’t stop it. From hurting me, him or the kids. The kids. As a parent, all I ever want to do is protect them and keep them from hurting but this hideous disease blocks me from protecting them. It is taking their father from them and they are front row witnesses. All I can do is stand helplessly by as their pain grows, his death grows closer and I frantically work at picking up pieces as they fall faster and faster until I can no longer keep up. They see me struggling to find a solution. They watch as he tries to speak and they can barely manage to put together his mumbles into a clear thought. They help him with so many daily activities during the day they can’t ignore his plight. They are entrenched, as we all are. I feel as if I am failing them while I am failing him. I can’t help him. Can I help them?

I see him look to me for help, I see him struggle to speak, to get dressed, to brush his teeth, to bathe and shave, to help around the house…..he deserves so much more, so much better. How dare this happen to such a wonderful person? How dare I fail him? Fail the kids? Fail myself?

I thought the grieving process would get easier but the truth is the grieving process is only subliminal for a while and then it re-emerges stronger than ever. Just when I think I have a handle on letting him go and moving on, becoming a single parent, making all of the decisions, being Mom and Dad, figuring out finances and facing my loneliness head-on and accepting this fate….I look at him, see is frailness, his desire to stay with his children enabling him to watch them grow up, his failure to manage the most simplest task and the disappointment on his face….what am I doing wrong? What can I change? What can I stop and divert?

The world keeps spinning around us. But my world has stopped. Friends have disappeared. But in truth, not only do I understand, it is ok because he is constantly within ear shot and I can’t have a private conversation anyway. My world is selectively smaller these days and yes, it hurts, but there is nothing surprising going on. Friends have called and I have not answered because I can’t really talk. It would be a superficial conversation and I am not up for that. I am barely up for a real conversation, but putting on a front has never been my style and at this point it is impossible. I feel as if I am in a prison, trapped and controlled by something no one is regulating.

I now wake earlier to assist him in the mornings. One morning recently, I got him in the shower, helped him, got him drying off and went across the hall to wake Brad up. I spent a few precious moments caressing his sweet face and hair and just having a private morning moment with my son. When I went back to the bathroom, Jim had found a razor and “shaved”, cutting his chin and leaving large portions completely untouched. And that is where we are.

I constantly feel pulled between taking care of him correctly and taking care of the kids correctly. They both need me and deserve better. But it is impossible. I am torn at all times and I know the answer. While I fail them both, I fall further and further. Jim and I discussed this several years ago when he was first diagnosed. The kids come first. But it is harder to do now, when it is actually upon us. I want to do right by him but I want to be the parent our children need as they lose their father.

It is just so sad to watch him. He is a ghost of his former self. It doesn’t have anything to do with my recent burdens. It is seeing him struggle to try to do a simple task and not be able to and to know at one point he had so much pride and was capable. Not that it would be easier any other way….I am just hurting.

Yes, I am depressed. Friends have suggested medication. My therapist has recently started mentioning it as well. But I feel like I have a right to be depressed. I am in a depressing situation. And I need to feel the hurt and the pain before I can move on, if I ever am able to move on. Right now I can’t fathom ever moving on past this pain. But I know that being medicated is going to numb some of the pain and I need to try to hold off as long as possible. I am not opposed to it, I will probably eventually take something to help me, but for now, I want to try to stay off anything that will deter me from understanding the pain my children will feel, are feeling and have felt. It is ok for me to hurt, I don’t need something to ease that pain, but I have no doubt that at some point it will be time to get some assistance pulling myself out of this funk.

This is a most agonizing journey and I am hopeful that at the end of the road I will be a better person and somehow survive strong enough to continue to help others. I am amazed at the number of people coping with this same plight and hurting and struggling as we are. How is our country able to stand strong without helping the weakest? My friends, there is a fight brewing, and I hope you will all be with me. It isn’t about money and it isn’t about class or race. It is about doing the right thing and about common sense. It is hard to imagine this is an issue, but it is. It is also hard to imagine a world without Jim in 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 (23)

There is a Solution, I just haven’t found it yet

quote-about-figuring-things-out-and-moving-forwardI am exhausted. Mentally more than physically. The paperwork. The worry. The constant watch. The pure, unadulterated sadness. It is beyond overwhelming, it has changed my thought process, my soul and my inner-sanctum.

Watching a person die is horrible. Watching someone you love die is worse. Watching someone you love die a slow, tortuous death is beyond comprehensible. The guilt, the helplessness, the frustrations, the anger, the heartache, the wish for it all to end…. There are times I wish Jim was afflicted with something simple like cancer or heart disease. Not only would there be hope for him (and therefore us) but there would be more support and understanding from the world around us. And most importantly, HE would still be with us.

The endless paperwork, processes and lack of understanding from any system that can help us is completely unbelievable. If someone else in my situation was telling me this story, I would immediately think that there must be something they have missed, there must be a solution and obviously they haven’t tried hard enough. Well, I am here to tell you….I have tried.

Many readers have been so, so kind and reached out with suggestions and ideas and just thoughts of love. Thank you. I want to address the following to you:

Jim is retired Air Force. He is currently on Medicare because he has been on Social Security Disability for over 3 years. Once a person who has Tricare Health Insurance collects SSDI for over two years, they are automatically switched to Medicare. There is no option.

We have applied for Medicaid and have been told our case should be reviewed and a checklist should be sent out sometime during the first part of August. In the meantime, I just wait to find out what paperwork they will need. I have done some research and so far have gotten together most of what I think they will want….every bank account, every insurance account (they want to know if life insurance policies have a cash value), every investment account and our mortgage statement. It took me several days to get all of this together. Obviously the person(s) who decided this whole process have never in their life been in a predicament like we are currently facing. The application, the turning in of said application, the conversations on the phone, the gathering of information, the waiting for an answer….it is almost as if they are trying to just wear people down so they don’t finish the process so they don’t have to help them. How do others get through this??

The Veteran’s Administration. Oh boy. Where do I start? Should I tell you about the gentleman who was supposed to be helping us with our intake questionnaire but instead  WAS WATCHING COLLEGE BASKETBALL on his computer? Let’s be honest….it isn’t college basketball season which means it was a re-run which means he already knew who won anyway! Ok, I am moving on….Jim scored a 9 on his MMSE. Some of you who have travelled this road know that means he tested in the severe range. How unbelievably awful it was to sit, as the psychiatrist, who obviously has no Alzheimer’s Disease training or background, tried to ask Jim about his recent psychotic break. Then tried to carry on a conversation with him. Then asked him simple questions he could not answer, as I sat and watched, tears streaming down my face. Awful. Just awful. But at least the kind doctor said he would try to help us and would try to find a way to get Jim care. Again, his disability isn’t service related. He isn’t a Vietnam Vet or Gulf War Vet and he is not 65. We make over $26,000 a year. We are the middle class and we have nothing.

I sat at my desk the other day just dumbfounded by this whole mess. How am I expected to take care of Jim the way he deserves AND take care of two children the way they deserve? And somehow keep sane? Actually I am not sure I am at this point!  $6000 a month is the starting point for Memory Care. I sat and figured out where I went wrong…If we had saved $500 a month for each of the 18 years we have been married, we could cover 18 months of care. But, we didn’t. Please let this be a lesson for all of you. In other locales around the country, the costs are double. So start saving my friends.

Jim is still home. He is doing very well. He is happy in a childlike way. He now needs assistance with getting dressed, with shaving, showering and unfortunately parts of the bathroom routine. He takes it all in stride, not getting angry or embarrassed. Well, occasionally he snaps, “I can do it” and there have been a few moments the kids were scared because he seemed to be getting agitated and we are all on eggshells knowing what happened in Connecticut,  but overall he is easy going. I feel bad because he can’t figure out things to do without constant urging and help. He will sit and color at the table, but needs some direction. I, unfortunately, am at this point either making phone calls, trying to fill out paperwork or collect needed paperwork or fixing dinner, or starting a load of laundry or  trying to make sure I focus some attention on the kids to remind them I love them and I do want to hear about their day and their thoughts.

I have not left Jim alone since he returned and I now feel like a prisoner in my own home. He has returned to the wonderful respite program he attended before a couple of times a week but otherwise I have a shadow.  No quick runs to the store, or walks with friends or private conversations (he is always lurking within 10 feet of me) or ALONE time. None. On one hand, it is so sweet that he loves me and needs me so much he cannot possibly be out of sight of me. On the other hand, I am reminded of crazy stalker people and no one wants to feel as if they are constantly being watched and followed. It is creepy and unnerving.

I need $72,000+ a year on top of the income needed to take care of myself and the kids to now take care of Jim in a facility that will keep him safe, occupied, clean and happy. I hate that money has become such a huge issue in his care, in our story, in the eventual way he is taken care of. I believe all that should be at issue is making him feel safe and loved as he dies. Helping our children lose their father with the least amount of long term affects.  I struggle every day to figure out a solution. I am college educated, strong, smart and capable. There must be an answer and I must not be good enough to figure it out. After all, it just doesn’t make any sense to  not have a solution. Wonderful suggestions have been made: Go Fund Me pages, ads on my blog, selling the rights to our story, divorce, spending it all down and using our savings because I am young enough to build it back up again, in home care, re-doing our walk up attic for him and a caregiver, etc. How is it that so many others have dealt with this situation and yet we are still not able to call the right person, hear a few viable options and pick the one that best fits our family? Lots and lots of ideas have been floated our way and it’s just hard to know what the right answer is. I suppose I will never know what the right answer is. I will be forced to make the decision I can make and then I will keep moving forward because that is what we do. Humans keep moving forward. Through grief. Through pain. Through hard times and even through good times. We all move towards some unseen light and hope that along the way we are consistent with our happiness, our love and our contributions to others.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (17)