Used to be Mine

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

Alzheimer's Disease, frustrations,

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

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

Brad, Jim and Frances. Nov 2015.

Brad, Jim and Frances. Nov 2015.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (11)

Sorrows Under the Mistletoe

Brad putting on the angel. Dec. 2015.

Brad putting on the angel. Dec. 2015.

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

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

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

He drools. A lot. Sometimes.

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

He feeds himself. He needs help being fed.

He is down to 160 pounds.

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

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

He walks away.

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

He can’t read. He can’t write.

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

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

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

He doesn’t watch TV.

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

He cannot go to the bathroom by himself.

He cannot tell us if something is hurting.

He cannot get dressed by himself.

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

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

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

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

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

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

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

Jim opening a gift from my parents. Dec 2015.

Jim opening a gift from my parents. Dec 2015.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (26)

And the Grief Goes On

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Visiting Jim at his new home. October 2015.

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

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

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

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

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

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

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

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (13)

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)

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)

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?”

“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)