36dfba9dcad5628e38b77a18f3a8456cI don’t want to write a typical Thanksgiving list of things to be thankful for. There is a lot of awful things that transpire in our world every day and I think it takes a lot of strength to look past hatred, anger, violence, hurt, bitterness and selfishness to see all the good that also happens on a daily basis.

I am a believer in the fact that in life we always have peaks and valleys. It seems some people have higher peaks and some have lower valleys. But we all have both. Sometimes your position depends more on your attitude than on actual external factors.

For the past few years it has seemed as if we couldn’t catch a break. It was more than Jim’s diagnosis with Younger Onset Alzheimer’s Disease. There were little and big things that added up to a feeling of not only being in a valley, but having a dark cloud overhead as well.

Sometimes, all it takes to get out of that gorge is one person. A friend to pull you out of your miserable depths and to set you on a different course. Sometimes it takes an army.

I now feel as if I have an army pulling me to higher ground. I certainly wasn’t able to get there on my own. Small things add up and big things become game changers.

I am not going to list all of the wonderful things that have happened. But there have been more in the past month than there were in the past year (so it seems). What a difference in my whole world. I can breathe. I can think a little clearer. I can start to figure out who I am.

What I really want you to take from this message isn’t about me. It is about ALL of us. We all need help. We all need that someone who will stand by us in life’s most difficult times. We each have those highs and lows. In a blink of an eye, we can fall from grace.

In this time to reflect on what we have to be thankful for, can we also reflect on what we have done so that others are thankful for us? I encourage each person to examine their contribution to our world. Not just monetary donations to your favorite charity. It is taking the time to visit. It is making sure all parties are invited (and if they aren’t for the sake of being a decent human being, please do not post photos on social media of all the fun you are having without them). It is small gestures like dropping off a bottle of wine, a dinner, a card, a gift card or even just a note to say you are thinking of them. Sometimes, it is just the fact you make an effort that can change the course of another person’s day (or week).

I encourage us all to stop being selfish with our time. Can you spare five minutes to call a friend you care about? Can you take the time and money to purchase a card and write a quick note? Are you in the neighborhood, or even within a mile or two, and can pop by to see if they need help with something?

I can tell you I had a wonderful friend who stopped by one day recently. She knew I was struggling. She text me and told me she was on my front porch. And she was, just sitting with her young daughter on my swing. And she knew I was in bed when I should have been up being productive. And she ignored my mess (me and my home) and she just visited me and loved me and reminded me several times throughout our visit how great I am. She made a difference.

There is another friend who knew I was probably not going to make it to a social gathering taking place close by. She knocked on my door, drink in hand and told me to get ready.

There is the couple who invites me over each month for conversation and drinks.

There are the friends from out of state who send e-mails and texts out of the blue asking how I am.

There is the understanding boss.

There are neighbors who come together to work on my house and provide our family with a place to be without worry of repairs.

There are strangers who have donated financially to help with Jim’s care.

There is the newspaper reporter who tells our story.

There are the very caring friends who help fill the huge gap left by Jim with the kids.

There is the occasional movie date and the lunch or coffee rendezvous.

There is forgiveness at my inadequacies. There is effort without expectations. There is love and support and it all combines to save me. Saving me and therefore saving my children.

I would never know how to repay each and every person who has changed our status from a valley to a rising hill. I am working towards that peak. All while Jim fights to remember us and him and how to be himself.

There is a huge contrast to our struggles, but we both are searching for the answer of who we are. Fortunately, we both are surrounded with many reasons to be thankful.

I am thankful for so much. In the midst of the worst time in my entire life, I am thankful. I encourage each person to search for that which they can be thankful, but also for how they can be the cause for someone else’s thankfulness.


posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (2)

And the Grief Goes On


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


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)


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)

The Next Phase is Here.

Screen Shot 2015-09-04 at 1.10.45 AMI have started and stopped this writing numerous times. Too many to count. I’ve, no, WE’VE all known it was coming for a long time, but we didn’t talk about it. We hemmed and hawed and left it unspoken and hanging over us like the chill that comes with the first frost; so unexpected you are able to fein surprise although it re-occurs like clockwork each year.

Yep, you can see to the bottom right of this writing a new widget. A place to click. A place to give. A place for us to take. And if ever there was a time I was full of mixed emotions, this would be it.

Over a great length of time, we have had several people offer to help us fundraise. I have been flattered and a little surprised, but have held off. After all, there are always others in need and I have always felt there is a time we will need more help and if I can just figure out a way we won’t need any.

Over the past three weeks Jim has been in a locked memory care unit to allow myself and the kids a respite from his care. And let’s be honest, we haven’t even been caring for him as long as many others have. But, our family was under a great deal of stress and the walls were crumbling and I saw a source of support that I latched onto for dear life. And it pains me a tremendous amount to announce the three of us have witnessed something we didn’t expect or want to admit….life and “normalcy”. What a cruel woman and wife I am to say such a thing. But I always have promised to be honest: we found ourselves able to “be”. Be relaxed. Be loud. Be late. Be early. Be silly. Be happy. Ouch. The last one really hurts. It feels as if we are somehow vilifying Jim or ostracizing him in some way but we aren’t. We are trying to live as he declines. By doing this, we are carrying on as he wishes but even that knowledge does not erase the sting from feeling as if we are abandoning him or that he is forsaken.  Just the opposite.

While at this facility, not only have we been able to breathe easier, Jim has been happy. He has a simple life that remains constant and without interruption to his schedule. That is what he needs and being in our home makes this almost impossible. His new self needs quiet and peace which doesn’t happen often in a home with active children. Plus I worry about him on the stairs since we do not have a bedroom or a full bathroom downstairs. And I worry about him walking out the door. And I worry about him eating or drinking something he shouldn’t, hurting himself with a tool or  knife or something he would be able to use simply in the past. I hadn’t realized until he wasn’t with us how much I worried. And the kids have noticed too. Recently we were discussing all of this unforeseen change and they both agreed I am happier and not as stressed all the time. Another ouch and another not so proud Mom/Wife moment.

I sat and watched our wedding video for the first time the same night our very good friend, to whom I will forever be indebted, started the GoFundMe Page to raise money for Jim’s care. I cried. I laughed. I reminisced. By myself. There were guests there who have since passed. Couples now divorced. Images long forgotten through the years of marriage and children and life. And there was Jim. My groom. So proud. So handsome. So, so perfect….

This is all just a huge mess. I don’t want help. But we need it and I have run out of options. I have fought asking for anything for a long time and it wasn’t until a conversation I had recently with someone who went through losing a wonderful husband to Alzheimer’s said to me, “Karen, I would rather give to your family and know I am helping you than to anything else. You have exhausted all of the ways you thought you would be able to get help and there isn’t any help for you. We all know you have tried and that there isn’t anything out there. You don’t have a choice. You cannot possibly take care of two children and Jim. It isn’t fair to any of them and it isn’t fair to you. Let others help. Trust me, they want to. Many want to but don’t know how and with it being an organized way for them to give, I really think they will.”  I thought and thought about her words. I cannot express the gratitude I have to her for saying them, nor can I express how much I really don’t want to be in this position.

Yet, the world never ceases to amaze me. The support that has come forth is truly remarkable. We have already raised enough to cover care for Jim for one month! Obviously, we need much more, but wow! I am so humbled, so moved and really, for a rare instance speechless.

There are so many others who need help and I feel guilty for possibly taking something away from them. I lay in bed thinking about this. Thinking to myself that if I can figure out a way to take care of Jim, others can receive the aid and help I would receive. And I am so sorry I haven’t figured that out yet. But at the same time I have become desperate and see no other way. So thank you for your support and for your very kind words. Thank you for the stories of Jim. One friend posted on her Facebook page a story of how Jim installed their car seat when their oldest son was born because her husband was deployed. I had completely forgotten this and it was a reminder of how much Jim always did for others. In the throes of this complete and utter quandary I often forget just how handy and giving and genuine Jim was. It makes me sad to remember him from years ago, but it also makes me proud to be his wife and to be charged with his care. He trusts me and I trust that we will not be forsaken.

If you can give, please do. If you can’t, please know I understand and all I ask is for you to share this link with your friends so maybe they can. The more who see our story and our plight, the better the odds of us receiving enough to make it through.  THANK YOU SO VERY, VERY MUCH.

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)

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?”


“Did he ask to come home?”


“Did he say he didn’t belong there?”


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


“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)