A Broken System Will Not a Broken Woman Make

For the first time since I started this endeavor I am writing directly on my blog without taking the time and energy and forethought to edit and proofread and ponder over my words before putting them out for the world to read. I am too tired. Too overwhelmed. And frankly, too frustrated and mad. Mad at our system.

Don’t get me wrong. Our friends, neighbors and even strangers have reached out over the past week to offer guidance and help in many forms. I am grateful beyond imagination. They have saved us and I really, really am humbled. But ultimately, our family is still left hanging on a ledge and hoping a huge gust of wind doesn’t blow through.

Jim is home. I know you have been worried and you have been praying and you have sent me your advice. Thank you. His sisters were able to drive him to Delaware and a very special friend rode with me for the 11 hour round trip to pick him up and bring him home. We didn’t know what would happen and I am pleased to tell you the ride was fine. He is fine.

Well, he is hard to understand. He needs help with showering and shaving and getting dressed. He needs verbal cues with washing his hands after using the restroom. He is confused many times and still insists he had to “beat the shit out of two guys”. But he is calm and his usual passive self. Obviously, I cannot leave him alone. Which is why I had to have a friend come stay with him the short time I needed to leave to go visit my counselor. Who listened and then stared at me, momentarily speechless (I don’t think this is a good sign).

I am going to try to do a quick overview of the past week and why I am mad and frustrated and feeling our system is broken. While Jim sat, many hours away, in a psychiatric unit, I called and begged for a way to get him safely home. At the time I started this process, we weren’t sure him riding in the car would be possible and an airplane ride was definitely out. Insurance would not cover a medical transport. So, he had to stay much longer than he should have. And I am ashamed to say I had very little time or mental capacity to really focus on him, how he was and where he was and think of him emotionally. I was too busy being focused on the paperwork and the problem of figuring out what to do. If he had had a stroke or a heart attack, I would have been able to rush to him, focus on his care, his recovery and not think twice about what to do about care when he was back in Virginia. There is nothing I could ever put in writing that will evoke for you that guilt of knowing I was more worried about other stuff than about him. I didn’t rush to be by his side because I had to think about what to do when he came home. This will haunt me for a very long time.

Once I realized I would have to get him home with no financial help, I had to decide what to do with him when he returned. Would he be ok at home? Would he get violent again? Is this the time to put him in a home, making it an easier transition? There were endless questions constantly running through my mind. All the while, our 11 year old son sat idly by waiting for me to get off the phone or off the computer so we could spend some of the quality time I had promised him weeks ago. Time that unfortunately didn’t really happen. Again, the guilt and the sadness cannot be conveyed.

Knowing Jim is retired Air Force, many have suggested the Veteran’s Administration. Jim unfortunately thought that too. It was always his understanding that if he put his 23 years in, he would be taken care of later. Granted, he always thought it would be when he was much older, but he always told me when he got too old and cranky for me to take care of to just stick him in a VA home. How I wish this was so easy to do. Jim does not qualify at this time (that I can find) for ANY VA help. His disability is not service related. He is not over 65 years old. He did not serve in Vietnam. He is not a Gulf War Veteran. Our family makes over $26,000 a year. I checked, re-checked and then checked again. If anyone knows anything different, please feel free to share the magic pass code. I could really use it about right now.

I also applied for Medicaid. Although I haven’t gotten the official word back yet, our chances of getting approved are pretty slim due to our income. Please don’t think we are living high on the hog. We are a paycheck to paycheck family. We own one car. One 1,600 square foot home. One TV. Yep, I splurge sometimes and get Starbucks and I have an iPhone that I bought for my job at the time almost 5 years ago and we’ve taken some nice vacations over the past couple of years. Trust me….this does not mean we can afford care for Jim. Unless we take EVERY SINGLE PENNY that we have coming in each month (I’m not even sure that will eventually be enough), then we could afford his care. Of course, at that point, there would be nothing for myself or the kids. And by the way, I will also have to spend almost all of the retirement and savings we have. So that whole rule about having 6 months salary in savings in case of an emergency? Gone.  Then we could have the state pay for our healthcare, our home, our food, our heat and even our children’s braces. And, I will not have money saved for my own retirement therefore I will also need assistance when I am older. So, to keep from using the government to help with Jim’s care in one program, our family will be reduced to using multiple government programs to stay alive. Then I see that our government is trying to cut disability payments next year by 20%? Really? And I am supposed to stay calm, cool and collected?

I cannot possibly explain the amount of frustration this causes me. I do not feel we are a family who is trying to take advantage of the system. We are in a unique situation, but because of rules, regulations, guidelines and black and white protocols, we are stuck right in the middle. We don’t make enough to pay for care, yet we make too much to receive aid. The programs currently in place are for retired people who can sell their homes and use up savings and retirement to pay for care, or they will then qualify for government assistance. It is not set up for middle aged families who may need that retirement later and who have young children at home and cannot sell their home to pay for care. As a disclaimer: Medicaid does allow us to keep the home and the car. The previous statement is in reference to who the people had in mind when they wrote all of the guidelines for the program.

Let me give you an example of a conversation I had this week. It will hopefully show you how much I feel like I have been a hamster in a wheel…..

While at the VA hospital, meeting with a Veteran’s Representative, I was asked for a letter from when Jim retired. It was his disability rating letter. I didn’t have it. The very kind gentleman told me I would need a Power of Attorney in order to get a copy. I pulled out my copy and tried to hand it to him. “No, you need a VA Power of Attorney,” he says to me. I look down at my copy and in bold, capital letters at the top of the very first paragraph it says MILITARY POWER OF ATTORNEY. So, I try handing it to him again and tell him it was done on a military installation and is a military POA. “No. It has to be a VA Power of Attorney. That one won’t work.”   Are you kidding me? This, while Jim sat in Connecticut, waiting for me to figure out something to help him. After all the years he served and thought he would be ok and not a burden to his family or anyone else. After I sat and cried for a moment, I asked the same kind man how I could raise my family on the $26,000 a year they expected in order to quality for Aid and Attendance? He very quickly told me that combat war veterans were coming back and living on $8,300 a year.

And what could I say to that?

Now I am just treading. Keeping my head barely above the surface and hoping all of the red tape, regulations and bureaucracy doesn’t pull me under. How am I expected to take care of two children and Jim with no help? If I was independently wealthy, no problem. But I am not. We are a middle class family trying to find a needle in a haystack.

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)

Survival of the Fittest

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

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

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

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

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

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

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

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

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

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

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

Battles Within

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

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

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

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

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

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

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

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

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

Jim riding on Assateague Island, May 2015.

Jim riding on Assateague Island, May 2015.

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

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

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

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

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

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

Battles with Medicare and finances.

Battles with emotions.

Battles with guilt and expectations.

Battles with loneliness.

Battles with internal desires.

Battles with commitments and timing.

Battles with anticipatory grief.

Battles with science and karma and helplessness.

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

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

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

Tentacles

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Jim has tentacles in me. Every part of my being.They are wrapped around my mind, woven throughout my body and engrained in my soul. His warm, soft tentacles encircled my heart and as they balance it precariously, they seem to harden and tighten their grip. His tentacles reach into our finances and my role as a parent. There is a tentacle in most of my friendships and in my career. There is nothing in my life that isn’t touched by him and that hasn’t been for the past 19 years. And now Alzheimer’s Disease touches each one of those things as well.

Sometimes I feel his tentacles being snatched out of me and it sears as if I have been touched by a radiating iron cane. The scars have started to form as they leave their marks. I fight it. I fight losing his love, his touch, and his help with every aspect of my life. A life now being ripped apart at the seams.

There are times I think, I can do this.

And then there are the dark moments that come out of nowhere and cause me to sink into an abyss.

I will get a bill from his hospital stay and fight with Medicare for hours on the phone to no avail as he sits quietly watching from the couch. Not long after, the kids will embark into a loud discussion and Jim again sits silent. By now I am on edge and ready to snap and all it takes is something simple…a misplaced item, something left out that should have been put away, homework not done before the TV gets turned on or rooms not picked up or dinner needing to be fixed or the trash smelling up the kitchen and I am the only one who seems to notice….. Something simple, that in the whole scheme of things doesn’t matter, will cause an enormous amount of pressure and unhappiness. When in reality it is the tentacles; the long, flexible organs that are burning me from the inside out. They are reminding me of the loss of my best friend, my co-parent, my financial advisor, my handyman, my confidante, my lover, my future and my past.

Watching Jim sit in the passenger seat during the brutally cold winter as I got out to pump each tank of gas. Seeing him in bed, unable to put the covers over his feet. Listening to him interject into a conversation with an almost unintelligible sentence that doesn’t relate to the topic at hand. Watching him fumble with his belt and unable to understand as I explain he is missing a belt loop or his pants are unbuttoned. Eyeing the unkept hedge (remember the hedge?), the edging needing to be done, the overall unkept yard Jim would never have allowed to happen.

I feel as if I am becoming androgynous. My role as mother is merging with the role of father. Taking out the trash. Mowing the yard. All of the things typically done in a household by the male. I realize this is awfully sexist, but in every marriage, each person has particular things they do. In our family, Jim did the “guy stuff”. Fixing things, taking care of the yard (except for planting the flowers), doing the dishes after I cooked, helping with homework or playing with the kids while I did my “girl stuff”.  We had our flow of expected responsibilities. It is hard to remember he used to pay all the bills or was responsible for keeping track of oil changes and inspections due. It is all me now. Plus I am accountable for his well being and care. Does he see the stress I am under? Does he see the paint peeling on the house? Does it bother him when I have to help him pick out his clothes? When he hears certain songs does it trigger a memory of special moments in our past? Does he think about me that way anymore?

This weekend is our 18th wedding anniversary. I took Jim to celebrate at a nice Italian restaurant. While driving, I made a concerted effort to hold his hand. I had to explain to him where to put his elbow and make him understand it was ok. But it wasn’t his hand I held. It was a stranger’s. It didn’t feel right in my palm. There were no callouses and the muscle tone was different and the grasp was uncomfortable. I tried to start a conversation several times to no avail. I tried to bring up our years together, only for him to get teary eyed.

I eventually just gave up and we ate in silence.

It is because we knew each other so well Jim was able to get diagnosed so early. I knew something was off and wrong extremely early in this nightmare, even as those close to us doubted me and pointed fingers my way and insisted maybe I was part of the problem. (I am still psychologically battling that one) I think he knew too because he never argued with me. I think he has tried in his own way to make this all as easy as possible on the kids and me. But there is no way to buffer the pain from his tentacles leaving me as he observes in silence, staring at something far off and unseen by those around him.  The touches are gone. The smile is gone. The lovely handwriting. Gone. Conversations. Gone. Help with the kids. No more. The pride in the yard and in his appearance. No where to be found. The connection and the emotional support. Vaporized.

The tentacles will continue to burn and leave me damaged. Ultimately I must find the place deep within me to regrow and become the person I am meant to be. It is no easy task while he is so clearly still here and needing me. I can’t move on, but I can’t afford to stay locked in the recurring torture zone. I am searching for that balance and the tools that will allow me to do both; move forward and remain steadfastly by his side.

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)

Leap Of Faith

201304_FreefallFly_PinSquare_smallIt is getting more and more difficult to share our story. Not because I don’t want to, but putting into words the decline, the heartache for our family, the frustrations that are commonplace and the dissipating conversations makes it real. Not that all of this hasn’t been real, but there were times excuses could be made or his fallacies seemed more aggravating and annoying than a sign of his disease and the difficulties that lie ahead.

I put the subtitle of this blog “Confessions of an Alzheimer’s Caregiver” for a specific reason. The main being this would all be MY point of view and MY emotions and take on this journey. Along the way I have tried to paint a picture of Jim and the kids and our friends, but it has been important to retain privacy for everyone involved except myself. When I started, Jim was very supportive, mainly because he trusted me. I take that trust and hold on to it dearly. Each time I write I try to envision what the old Jim would say, would think, would feel. I try to ensure I don’t misuse the trust he placed in me.

The line between what to publish and what not to publish seems to be less and less clear. I struggle to know the right answer. So, sometimes I remain silent. But his disease does not remain silent. It speaks to me each day, loud and clear.

Jim is declining. Not rapidly, but not slowly. His speech at times is not comprehensible. His movements are those of a much older person. He wears the same underwear, clothes, socks and pajamas until I tell him he has worn those same items for two days straight. Most of the time he goes and changes. Sometimes he comes back in the same outfit and tells me he did change. Most of the time a belt loop has been missed. Sometimes two loops. He eats bowls of cereal over and over again and says he hasn’t had any. He stopped walking the dog for a while unless someone reminded him but lately has picked it back up. He still goes and plays tennis, but needs reminders. He has stopped jogging almost altogether. He barely watches TV, but at times will watch a game with the family. He cannot put a puzzle together. Long gone are the crossword puzzles he devoured and the books he enjoyed. He has great difficulty hanging a coat or shirt. At times he struggles with his seatbelt. He still eats whatever we set in front of him. He gains absolutely no weight. He is obsessed with things and then forgets them completely. He has little understanding of time. He can still vacuum. He no longer paces around our downstairs area; he now just stands in one place for great lengths of time. Sometimes in the dark. He rinses dishes and thinks he has washed them. He puts the trash in the recycle bin and the recycling in the trash bin. He brings in the overflowing recycling container before the truck has come by. He feeds the dog food to the cats and the cat food to the dog. Sometimes I catch him with dog food in his hand, putting a few pieces on the floor at a time for the dog instead of filling the cup and putting it in the bowl. He puts things in very strange places. He can no longer read a menu and independently order a meal. He usually remembers to wash his hands. He will drink 5 glasses of tea before his food comes. He will wash his hair with lotion or conditioner. He will go to bed without telling anyone goodnight. He will laugh and throw out a joke at anytime. He still looks good when he has shaven and gotten some rest. He still craves being with his family.

So, this is where we are. He is in full- blown Younger Onset Alzheimer’s Disease form. Not Mild Cognitive Impairment.

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Over the past several months, there has been a huge transition in our family. Jim has continued to battle gallantly, but still becoming more and more dependent. As he has needed me (or someone) more and more, I have become suffocated and started having my own problems. My work was giving me more and more responsibility at the same time I was needed more and more at home. Both kids were needing me. Jim was needing me. My work was needing me. Something had to give or else I was going to end up either in the hospital or a mental ward. With much thought, I decided to step down from my job. This was a difficult decision because we need the money and I need the outside connection. I am often asked how we make it financially. I don’t have a magic answer. I save when I can and I spend when I have to. I don’t pay for his daycare yet, just respite care. I will write more about this later. After I quite, it took a while to really let go. My job was ingrained in me. But the one thing I realized was how little time I was spending with the kids, especially Brad. Our bond was suffering and what was important became more and more crystal clear: our children. I have not regretted my decision one bit. My stress level was cut in half. My ability to parent both kids has re-emerged. I can work on The Garner Foundation and volunteer at the kids’ schools. I can help Jim more and find ways to become an advocate I wasn’t able to before.

But slowly, I have been sucked back into a darkness. As Jim has declined, my will and my own strength has tumbled. I don’t have the outlet of work. I don’t have something forcing me up and out into the world. I don’t have to take a shower, do my hair and makeup or for that matter, get out of bed unless I really want to. This is not good. I have been suffering, as I suspected I would, when I decided to quite. I need outside stimulation. I cannot sit home all day with no purpose or agenda.

As fate would have it, Home Instead Senior Care asked me to help them with some upcoming Alzheimer’s programs. They asked me to write for them. They asked me to be part of their team, without the stress I was under. They agreed to pay me to do basically what I have been doing and what I am passionate about and what I will more than willingly get out of bed to do! This has been a lifesaver for me. The foundation has been a lifesaver for me. I wish I could find something to save Jim, but we all know I can’t. All I can do is keep doing the best I can, when I can. It is amazing how you really can learn to let the little things go. Especially when you don’t have a choice.

Sometimes, when you take a leap of faith, a net catches you and throws you higher than the cliff you jumped from.

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

Valentine’s Ashes

Thank you Patti Brown for this amazing photo. 2008.

Thank you Patti Brown for this amazing photo. 2008.

I suppose this time of year is unbearably hard for those who don’t have a Valentine. I have never been a big fan of the holiday, even when I did have a Valentine. Now it seems every commercial, every restaurant, grocery store and online pop up ad flashed a “YOU DONT HAVE A VALENTINE” in my face. Yes, I do have a Valentine. A man who has loved me when I am not worthy and who has forgiven my faults and shortcomings for many years. A man I admired and respected enough to marry and have a family with. So, I know I have a Valentine, but according to the ad executives, I don’t. Because he can’t buy me jewelry or chocolates or the perfect Hallmark card. He didn’t even remember or seemed concerned once he was given his chocolates and told “Happy Valentine’s Day”. That is the part that stings now. He was at the point where he couldn’t think far enough ahead to plan for a holiday. Now, when the holiday is here, he is oblivious to what his role would have been. Each year that passes and each holiday that has expectations attached reveal the layers that have peeled away in Jim’s mindset.

I spent Valentine’s evening dropping Frances off with a friend so she could spend the night and then go skiing the next day. I am so grateful to that family because she loves skiing and I am not going to be able to take her this year. When I dropped her off, the family invited me to join them for dinner. As I sat in their beautiful kitchen, watching them work together to fix a lovely meal, listening to the girls play ukuleles and joining in as everyone sang along…..my heart hurt. This was an evening that I would want to host in our own home, with Jim helping and our family being the warm and inviting refuge others want to visit. It wasn’t that I was jealous, amazingly, I wasn’t. It was just a bittersweetness and yet I was happy and having a great time. I love sharing time with them and love the fact Frances is able to visit and to be part of a family who can sing and cook together and go skiing. I love the kids being with other families and seeing what other relationships are like when one of them isn’t sick.

The next night, Jim, Brad and I went to visit different friends and it was the same.  Others working together to host us, fix a nice meal with lots of laughter and fun. Again, I was both happy and sad. I loved the fact we had friends to hang out with. I loved the fact that Brad was able to see the communication between other adult couples and play games with us and to witness a different side of marriage. Yet, I recognize that it is becoming more and more difficult to remember us as that type of couple: full of chit chat and hugs and laughter.

It must shine a magnifying glass on certain things in our home when the kids visit with their friends. I wonder if they notice the difference in marital relationships….. I am sure they do. They are observant kids. I wonder how all of this will eventually affect their own marriages and relationships…..I wonder so many things; all the time. My mind constantly seems to be going full throttle, but there are times it seems to be puttering out on me. I am forgetting words and at moments having a hard time saying exactly what I am trying to convey. It is so frustrating. I know it is the stress, but it also helps me understand how frustrating it can be for Jim to not be able to find the right words. And lately, he is having a harder and harder time.

I know I will get through this most romantic time of the year without a romantic partner. Yet, I can’t help but wonder how I will ever be happy again? I don’t mean with another man. I mean, AT ALL? By myself, with someone, with the kids….AT ALL? I know what it feels like to be loved, cared for and to have a partner; in the kitchen, on the slopes, with the kids, playing games, lying on the couch reading or watching a movie or just communicating without words…. in life….and I don’t have one anymore. I have always known I am an independent person and surely this must be coming in handy, but I don’t know that being a strong willed, independent person helps take the sting out of lonely nights and thoughts that can no longer be shared and dreams kept quiet and shows watched alone.   I am acutely aware of the singleness that is overcoming my life. Jim is fighting hard to stay with us, which makes my recognition of these feelings of aloneness and solitude more inappropriate. I am not going through a divorce. I am not part of a relationship where the husband is out all night and I am sitting home alone. I am not supporting a man who won’t go find a job. I am thankfully not caring for someone violent, angry or ungrateful. I have many things for which I am appreciative,  yet I am longing for a life I no longer have. I can witness it and taste a sampling, but I cannot have that happy home with an equal partner. The worst part is I had it. I had all of what I long for, and it is slipping away one plaque and tangle at a time.

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

Doctor Day Sucks!

Jim and I. Dec 2014.

Jim and I. Dec 2014.

Today was DOCTOR DAY. I think in general we usually look forward to going to the doctor, even subconsciously, to get healed. Healed from whatever is ailing us. Healed from something we may not even know is wrong. Healed from things that hurt a little and things that hurt a lot. Eventually, with the help of the almighty physician, we are healed. Unless we have something that they just can’t heal. ALS. Huntington’s Disease. Lots of types of cancers. Alzheimer’s Disease.

Today, I saw the pain of not being able to help us on Jim’s doctors’ face. And in his words.

To start with, they called Jim back without me to do the mental exam. I knew it would be lower than the last visit nine months ago, but I didn’t realize quite how low. When they called me back, I could tell the nurse, who we always see, was a tad “different”. I knew that she had seen the difference in Jim. I knew it was bothering her.

When the doctor came in, he was his usual pleasant self, but when we got down to business, he fumbled over his words. He was struggling, because as a physician you are trained to heal. You are trained to find out what is wrong and to fix it. He can’t fix what is wrong with Jim. Jim went down 6 points on the memory exam. I looked at the drawing of the clock which is always part of the exam and I saw there were no hands and the numbers were wrong. My heart sank. Even though I know he is declining, seeing it in black and white is hard. Hard. For ALL of us.

When I entered the room and it was just Jim and I, he started to cry. He knew. He knew he hadn’t done well on the test. He isn’t far enough gone to be completely oblivious. This is so painful to watch. This wonderful man, crying and realizing what is happening to him and not being able to do one single thing to make it better. He told me he wanted to move away. I asked him why. “So the kids don’t have to see me like this. I don’t want them to see me the way I am going to be.” It took every ounce of self control not to burst into tears with him. I saved that for later.

I recently went for a walk with a friend. During our hike, we discussed Jim and lots of different sides of being his caregiver. Part of the conversation went like this:

Me: I don’t really feel sorry for myself. I think sometimes I come pretty close, but for the most part, I don’t think I am.

My friend: Really? I thought from reading your blog that you were pretty sad most of the time.

(At this point I was a little surprised since I didn’t know she was keeping up with this blog)

Me: Not really. Yeah, I get sad, but I can’t stay that way all the time. It would be awful for Jim and for the kids.

My friend: You don’t feel like you feel sorry for yourself?

Me: No. I feel sorry for Jim. I look at him and I just really feel sorry for him. And I think about the kids not having him for a dad. He was such a great dad and they won’t remember all the awesome things he did with them and for them. I am a much worse parent and it’s actually sorta sad that he is the one leaving them and not me. He would be more patient and teach them so much more. I get really sad thinking that they won’t have him around and they will watch him decline more and more and it is taking over their whole childhood.

My friend: You are a great parent. You shouldn’t say that.

And then we walked. Because, what else was there to say?

Back to the doctor visit…. The doctor recommended we try Namenda and the Exelon patch again. As I have written in past blog posts, we have tried EVERYTHING and I am not going to rehash why Jim is off all meds at this time. But, I believe we are going to give them another try. He told us that sometimes when a patient is further along and showing increased symptoms the medications can show help in lessoning some of the symptoms. But of course, they aren’t a cure. As the doctor spoke and Jim listened, he started to cry again. He understood he was hearing that he is declining. The doctor told us we wouldn’t do the memory tests anymore because there wasn’t a purpose any longer and it was causing stress. He also told us we didn’t need to schedule an appointment for a set amount of time. We would start the medications and call in as needed. There is no point in seeing him as Jim declines because there is nothing else he can do. This is not to say we can’t come see him and won’t, but there is no set six month or nine month time frame anymore. Just whenever we feel we need to see him.

Whew. I am crying as I write these words. My heart aches for not only Jim, but all of us who travel this journey with no help. No way to fight. No hope.

I am not a scientific person, but many times I wish for a scientific answer. How long does Jim have? What trajectory is he on with the decline he has shown? It may seem a little morbid to some, yet others will completely understand. I think it is human nature to want to know how long you will have to endure a form of torture and pain. When will this be over? When will Jim not be in pain? Actually, that is more of a clichéd expression. Jim isn’t in pain. Only when he realizes he is leaving his children. Most of the time, he is happy go lucky and in great spirits. He has a great attitude and is very pleasant to be around. He isn’t angry or sad or even moping around. He has the best attitude he could have and I am so proud of him. So when I say something about wanting a time frame, it isn’t because I want him to be gone, it is because I am trying to plan, trying to figure things out, trying to adjust and have a concept of what lies ahead. I believe people do this in all aspects of life; whether it is planning for high school, college, their first job, marriage, having a child, moving to another country, moving out of their parents home, changing jobs, etc. We are always looking ahead and asking for time lines.

It was mentioned that Jim was declining faster than some, but not as fast as others. I guess you would say he is somewhere in the middle. Not a fast decline but not a slow one either. I didn’t ask the doctor about a time frame. He wouldn’t be able to tell me. Alzheimer’s Disease works so differently for each patient. And Jim is very healthy otherwise. I know this is a long haul. I can handle it. We all can handle it. But I hate that he is having to and I hate that the kids are having to. I hate that my friends have to take care of us and I hate that my parents must use up so much of their retirement years rushing to help us. I despise being the damsel in distress. I know Jim despises it too. He was our knight in shining armor and unfortunately, he knows he isn’t any more.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (22)

I appreciate what I have…but Miss what I don’t!

i-am-thankful-for-my-struggleThere is a little boy who is dying tonight. He is two years old and he has cancer. I don’t know his family, but I still hate what their family has endured and what they will continue to endure long after their precious son has left them. I see updates on Facebook from the family. We have mutual friends and as I have watched their fight and witnessed from afar their heartache, I have pondered life and the unfairness that happens in our universe. I see Jim, struggling to keep his dignity and to stay a dad as long as he can. And I read stories about parents losing their children. If I could somehow make it so that I had to endure the frustrations and constant sorrow I am faced with each day to save a child, I would. But as much as I wish my suffering and Jim’s suffering could abate the pain felt in another home, I know it won’t. I know I will continue to watch as Jim fights his own battle the best he can. I am only a witness to the things I recognize as more heinous than watching Jim succumb to the plaques and tangles multiplying in his brain in another family…. Losing a child would be one of them. I am so, so grateful for Frances and Brad and somehow, dealing with the pending death (albeit not tonight or tomorrow) of my spouse, I cannot help but be so grateful for having them with us and in seemingly good health. It isn’t lost on me that I may be suffering a loss, but it could be worse. To the parents who are losing a child or who have lost a child, I am so sorry. I wish I could somehow take the suffering our family must endure and replace yours. I suppose it would make all that our family is going through worth it….if we could find some good in our pain by easing the burdens others face. I sometimes wish Jim would just die. Now. I don’t really want him to die, but as I have mentioned several times, I don’t want to be part of what is coming. It is this unbelievable awful thought process: I don’t want Jim to die, but I don’t want him to continue to decline in cognitive abilities and don’t want his children to watch him suffer in a way that they can’t possibly change or help in any way. I know that Jim doesn’t want to become the person he is becoming. It can cause so much internal stress thinking about it all, the best way to handle it can be to shut down. But dementia patients need you there for them for years, so you are not allowed to shut down for long. You must stay in the present, to help them and in my case, help our children. The irony cannot be missed: my partner, my go-to person is the patient. The stress and the heartache and the gut wrenching thoughts would be eased under normal circumstances because Jim and I would discuss them and he would be my sounding board and my help. I have come to realize with much clarity that even marriages in troubled times have two partners. Partners that can communicate. Partners who can help with whatever needs helping; dishes, yardwork, decisions on finances, disciplining the kids, vacation ideas, what to do with free time, what to watch on TV, what to do about life situations that happen with friends and family, co-workers, cable companies, etc. I have opportunity to sit back and watch relationships now with a different thought process and a much different appreciation. Even my friends who complain about their spouses (and as they do they usually apologize to me and tell me they shouldn’t be complaining to me of all people) have to recognize the simple pleasure of having a partner who is there, in the moment and who can carry on a REAL conversation and even if they are driving you crazy with the point of view they have, at least they have a point of view. At least they can listen and comprehend you are upset or need to vent or have ideas that they are helping you mold into realism.

The big question is would I suddenly appreciate Jim if he miraculously went back to the man he was 10 years ago? Would I find the fact he was able to be a husband and a father in such a magnificent way enough? Would I be content and appreciative? I certainly like to think so.

Since I am reminded daily there is no cure and there are no treatments that can correct his decline, it is a moot point. But I think it is reason enough to pause and appreciate where he is now and how much we have to be thankful for. Starting with two amazing kids who continue to bless us with love and lots of great memories. And a man who doesn’t give up and who tries his best, each and every day.

Frances and Brad in Alaska, July 2014.

Frances and Brad in Alaska, July 2014.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

I love my kids

Frances and Brad, Sept. 2006

Frances and Brad, Sept. 2006

I am like 99.9% of the parents in this world….I LOVE my kids. I love watching them play sports and participate in school activities and I love hanging out with them (most of the time). I love the chats we have and I love the laughs at the dinner table. I love that they make me a better person. I love teaching them about the world and I love it even more when they teach me a thing or two. They are actually pretty good behavioral wise and both of them show me love and gratitude on a daily basis. I recognize how rare this can be with a 14 year old and a 10 year old and I am very, very grateful. I suck it up and savor every moment. Sometimes to the point of being a little too emotional and a little too sappy. I realize it won’t always be this way and appreciate what I have right now. They are by no means perfect, but I am proud and I recognize how seriously lucky I am to have them in my life.

There are moments I get really hard on them for not wanting to be with Jim more or for getting frustrated with him; just like I do. I don’t praise them enough for when they do show patience and when they are participating in his care. As with most of life’s moments, we see them clearer when they are firmly behind us. It is important to me to learn from these lessons and to keep trying to become a better mom, a better wife, a better person. The end result will save me from my self -destructive ways and from wallowing into a mass of self pity. It is difficult to feel sorry for yourself if you are constantly critical within your own decisions and behaviors. Some say I am too hard on myself, but when I consider the alternative of accepting my situation and letting myself fall to pieces over and over or become less of a person than I should or can be, I am not thrilled with what that person looks like. I would fall into a deeper hole because I would be so disgusted by looking into the mirror and not liking what I saw. I suppose without Jim to keep me in check, I am forced to do it myself and this is the way I can. I sometimes rely on friends and family, but they try to be too delicate with me for fear of making things worse or just because they want to protect me more than hurt me. Yes, it would hurt to hear something awful about myself, but in the end game, it would be better for me, Jim and the kids.

I often forget how different their childhood is from mine. I remember growing up being terrified for a while that my parents would die; either from cancer, a car wreck or something that would take them away from me. I can vividly remember asking them when they were going to die and begging them to never leave me. I still feel that way. I think most kids go through this phase at some point. Fortunately, those fears were never realized and I am blessed to still have my parents in my life, helping me as much now as they did when I was living in their home.

On the contrary: Frances and Brad have basically always known that their Dad will not be around forever. They don’t complain about it. Actually, they never mention it. I suppose it is just their “normal”. When we started realizing something was terribly wrong with Jim, Brad was just 5. He doesn’t remember anything different. He doesn’t have a carefree life without the burden of Alzheimer’s Disease. Ever. It is as engrained in him as eating fruits and vegetables or washing your hands before a meal. That is all he has known. Although I live in this family with them, their perspectives and thoughts are so different from mine. Their expectations differ and their reality is now including a disease that not only took their grandmother and uncle from them, but is taking their father too. And they are both fully aware, it could possibly take them or their sibling.They are extremely close for children this age and I am sometimes just awestruck at this. Frances has been gone during the week recently and Brad asked the first week she was gone if we could pick her up early, telling me “it just isn’t as much fun when she isn’t around.” And when I picked her up and brought her home, the first thing she wanted to do was see Brad.  I think part of the reason they are so in tune to each other is their common woe of Alzheimer’s Disease and losing their father in this manner.   What must that be like? How would I feel? I know how I feel with it being my husband and possibly one day my child, but what is it really like to grow up with this horrible mess surrounding you constantly? Is it like living in a war torn country? You just get used to it and learn to adapt?

Frances remembers Jim from before he was showing signs, but her personality allows her to be very practical and compartmentalize on a regular basis. I worry one day, when she is older, she will look back and have regrets. I worry I am not doing enough for either of them now to make it easier and more bearable later. I strive to give them as normal a childhood as possible: no favors from teachers or coaches, no special treatment from schools or organizations they are applying to. There are two rules that I will not budge on: not taking advantage of Jim and not manipulating our situation to their advantage. I feel strongly that it will only hurt them in the long run if they rely on his impending death to get away with things most kids their age try or if they are treated with kid gloves.

There are moments I think way too much about all of this, and I want/need someone to talk to….my husband would be my first logical choice, but as you know, it isn’t a choice that is available. So I sit, by myself, trying to single handily determine the best way to parent two children who are not only losing their father a fraction at a time, but who might eventually sit across from a doctor listening to the same horrible diagnosis.

I am sometimes so completely stunned, I am not able to function at my normal capacity. It just can’t happen. I can’t think straight and I can’t decide what to do about anything. I can’t figure out what to fix for dinner or where some papers should go or how to plan our lives financially. The stress and the burden of trying to stay “normal” through a very, very long illness and subsequential grieving process can make a person not only change their personality, it changes priorities, desires, rationality and common sense.

My first and most important goal is to raise two, healthy, children who are not completely scarred by a childhood overshadowed by death. If I can fulfill this objective, I will have been a good mom. I won’t know until years from now. All I can do in the meantime is the best I can, when I can. And then I need to accept I won’t always be my best. I will still be me, but I will just be a lesser version for a time.

Jim, Frances and Brad, April 2013.

Jim, Frances and Brad, April 2013.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (4)

Trapped Alive

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Sometimes when I write this blog, I have to censor myself. I don’t do it to protect myself, but to protect my kids, my family, or Jim. Sometimes it is because the reality of this disease is so harsh, so burdensome, so outlandishly crazy with the fact that more isn’t being done to help that I have to abstain from writing what I really want. There is a novel being written in my mind that would completely shock some and others would be like, “Yeah, I could have written that years ago.”

I am going to attempt to walk a fine line and discuss where I am and where Jim is. Actually a small facet of those.

I feel trapped. Trapped like a caged animal desperate for release. Trapped in a world I have little control in. Slammed against brick walls and thrown into a dark abyss of pain, selfishness and emotional upheavals that are unbridled and uncontrollable. I am stuck with Jim. I am stuck taking care of him and worse; I am stuck watching him become someone I don’t know. I am MARRIED to a person that can no longer use a hotel key card or who doesn’t understand that you can’t put the Costco cart inside of the World Market store. I bare witness to the mumblings and the utter disregard for clean clothes. I know it is politically incorrect to say these things, but I know I am not alone. I know that there are others who have these same thoughts. It is ok. It has taken me a long time to accept this. It’s ok because I don’t ACT on the thought of feeling trapped and suffocated. I am staying. I am here, doing the best I can. This is me, being me. Even when the kids were younger, I would sometimes be waiting for Jim at the door, ready to hand over the reins so I could have an hour of “me time.” And I love being a Mom and love being with them. But I have always needed my space.

When the kids were just babies I would read article after article on how to be the perfect Mom. You have seen these in parenting magazines….How to Raise a Giving Child or What Every Mom Should Do To Prevent Tantrums. I could never live up to the examples that were set in print. Now that I am a caregiver to my husband, I sometimes fall into that same old habit of trying to be the perfect care provider all over again. But this time, I am a little more mature (just a little) and I am being forced into a corner that will either allow me to excel or set my life on an uncontrollable  spiral. But this time, there are clear repercussions if I fail. My children will suffer at my shortcomings and so will Jim. If I don’t do this “right” I could lose the most precious and wonderful things in my life: my children.  I am choosing to excel. In order to do this, I must find a way to accept my faults. To accept my faults, I must be honest. And that is where this revelation comes in.

One of the things that Jim and I did well was accept each other. Sure we each had our little things we bitched and complained about, but for the most part, he let me be me and I did the same for him. Part of my appeal to Jim was the fact I was so independent. I loved being with him, but I liked my space. And so did he. It worked well. We did stuff together and we did stuff apart. He played sports, I hung with friends. We worked around the house together and watched movies together and then we would travel separately for work and it all came together nicely. Now, not so much. He is home. All. The. Time. I am told when I am not with him, he constantly asks where I am, when I will be back, looks out the windows and front door and paces. I haven’t seen it first hand, but I know this is typical behavior for an Alzheimer’s patient. But it isn’t typical for me. Or for Jim. I don’t do well with feeling suffocated. I need my time. To do whatever. It doesn’t even have to be anything major. Just going to the store by myself or walking a trail by myself or catching up with a friend makes a huge impact on my mindset. Over the holidays, I was basically attached to Jim at the hip and without me realizing it, I was subconsciously revolting. It is who I am. How can I change this? It isn’t cool to say you want some space but I NEED my space. I need my time to do whatever I want.

I have so little time left with Jim, shouldn’t I want to be with him 24/7? Shouldn’t I want to take him in; his smile, his laugh, his eyes, his hands, his everything? Shouldn’t I want to be there for every joke he still cracks and to guide him through his day?

No. I can’t. It isn’t part of my personality and even more to the point: I DON’T WANT TO. It is too hard. I hate seeing him this way and he still has a long way to go. And this my friends is the catch 22. I want to be with Jim, but I don’t want to be with Jim. There is a constant ebb and flow of emotions….. the reality is simple: I want to be with the real Jim and right now I am settling for an impostor. He has such a great attitude and still tries so hard and gives so much of himself….but he isn’t himself and sometimes it is too much for me to see him in this state, however amazingly good it is for someone at this stage of the game. It is such a far cry from the sturdy, autonomous, handsome man I have lived with since 1996. It cuts me to the core and sometimes I am just unable to simply be ok with the  man I am currently living with.

So, here I am. Being honest. I am not going anywhere. I am staying put, but in my mind, I am sailing the islands of the Caribbean or sitting on a dock overlooking a mountainous lake while reading a book or taking in the Northern Lights (on my bucket list) or snuggling with the man who always made me feel like a million bucks until he couldn’t anymore. And now it is up to me to make sense of it all just to stay sane enough to carry on.

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)