Dropping the Ball….Again.

Brad and Jim working on a puzzle. Jan 2016

Brad and Jim working on a puzzle. Jan 2016

The one part of being submerged in the Alzheimer’s world I never get used to is the amount of time I seem to waste on the phone or searching for answers online.

When Jim was first getting tested and diagnosed, I did research online because the doctor didn’t tell us much other than he had Mild Cognitive Impairment with the probability of advancing to Alzheimer’s Disease. I had no idea what that really meant.

Then when I asked during a follow up visit about support groups and the doctor recommended a group sponsored through his hospital for head trauma victims, I went back online and found The Alzheimer’s Association and their support groups. And I found a new neurologist.

I turned to the internet to read up on the latest treatments and research. Then I stayed up countless nights searching in vain for a clinical trial for Jim to participate in (he was too young and ended up being part of a diagnostic study).

Throughout the years, there have been times where I needed to understand so much more than I felt capable of without any help from a more knowledgeable source. I still feel this way; inadequate and dimwitted.

Filing for Social Security Disability for Jim took hours. Applying for Medicaid took hours. Filling out the Aid and Attendance paperwork, meeting with attorneys, social workers, government and veteran organizations….hours and hours and hours.

This past summer, I spent Jim’s last months at home on the phone probing for answers that never appeared. I made call after call, desperate for help with his care, assistance transporting him back from Connecticut, dealing with the VA, looking for a new home for him and trying to get some answers about what all of our options are (or in reality aren’t).

Now, I find myself back at my desk, searching online and making calls. This time to fulfill Jim’s wish to continue helping find a cure. He wants to donate his brain/body to research when he passes away. Sounds simple enough. I am sure there are many options and I can just tell his doctor and they can set it up. Wrong again.

In order to donate your brain tissue for research, you must be participating in a study before you die. You need to go to that location, have them evaluate you and become enrolled in the research program. If you wait until you can no longer travel, it is too late. The ironic part of this is of course that for many years Jim was too young to participate in trials. Even though he is the perfect research specimen, having no other medical issues other than Younger Onset Alzheimer’s and he was willing and able to participate,  possibly assisting a researcher somewhere to understand something that could change the course of this horrific disease, no one mentioned donation after death. No one asked if he would participate later. No one told me the timeframe and what needed to be done.  I didn’t ask.  And now I have failed him. There are only a limited number of brain banks around the country. Most are not even close to us, which is another problem. Several places would not take him because he is too far away. One study needs another family member to be involved in their program. One study, in New York, needs him to come in person to be evaluated. Maybe if he was having a good day, we had a private plane and the stars aligned just right.… It is so difficult to just accept “not possible” as an answer.

So, I tell you all of this to educate. If you or your loved one wants to donate brain tissue, start working the process now. It is not as simple as making a quick call. I am feeling like I have not fulfilled Jim’s wishes and wasting what his atrophied brain could teach. By not doing this last year, when Jim was capable of traveling and verbalizing his desire to participate, I have let him down and I have let down many others, including our children. Again.failure-is-success-if-we-learn-from-it

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (16)

Phantom Lover

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

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

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

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

I am a woman with unrequited love.

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

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

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

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

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

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

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)

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)

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)

Strong Girl

 

Cliff Jumping in Bermuda, 1993.

Cliff Jumping in Bermuda, 1993.

I was held up at gunpoint. I was on my way from my car to my apartment, walking with the man I was dating and suddenly there were two guys with ski masks over their faces pointing guns at us asking for our stuff. I remained calmed. I looked at the gun, less than an inch from my eyes, and thought to myself, “it looks fake”. I knew well enough not to ask the person holding the gun if it was. I knew there were people working out in the fitness room less than 20 yards away. As my date was fumbling with his wallet, I was asking them if I could just give them my money so I wouldn’t have to go through the hassle of getting a new license and replace everything in my purse. No such luck. As I watched them coward away, I memorized what they were wearing. I told my then boyfriend to go in and call the police and headed back to my car to try to find them (I know, I know, I have been told numerous times what an idiot I was). As a single female, I had followed all the precautions: apartment on the second floor, overlooking the pool, next to the office, etc. It didn’t stop an event that changed my life and could have ultimately taken it. I learned  you can try to follow guidelines and do what you are supposed to do but it doesn’t alway mean things will turn out the way you plan or the way you are promised. I was calm, cool and collected until after the police left. Then I couldn’t leave my apartment after nightfall for months. I would stand in my window and cry. I was haunted by the sheer brevity of the fact a slip of the finger could have ended it all. I was not the strong woman I had been for 26 years. I was living in my own prison. I learned that night the guy I was going out with wasn’t for me and ended things fairly soon after. Three months later, I met Jim. And my life was again changed. But changed so that I regained my strength and my ability to be strong. I eventually was even able to watch shooting and guns on TV and movies. All with the patience and understanding and support of a savior.

When I was 24 I packed my car and drove from North Carolina to Las Vegas by myself (before cell phones!), not knowing a single soul. I moved there for a job and stayed long enough to meet Jim. Again, following the rules….called my parents each night, let them know where I should be the next day, didn’t do anything crazy while driving across this beautiful land of ours. At the time, it seemed a normal course of action for me. I would not have respected myself if I hand’t gone. The person I was then must still be inside of me…right?

Aren’t we always taught to follow the rules and everything will be ok? It’s not. Jim didn’t do drugs. He was a good person. He worked very hard and was good at his job. He was quite a catch. Jim was safe. He was a good provider, he was a good man who would make a good husband and a good Dad. I took the safe road. He helped others and gave more than he received. Why is this happening to him? He was a much better person than I. He was a better parent. He was an all around better contributor to society. How is it he is the one being taken early? The unfairness is blatant. And now I am fumbling daily to find my footing and keep some sense of perspective that will allow me to help him navigate his new shortcomings and help our children remain intact and keep our home and figure out dinner and keep up with laundry and make sure the schedule is updated and homework is checked and everyone has taken a shower and eaten and is OK. But am I OK? I don’t know. I just don’t know.

My point of telling you these stories is to remind myself I am strong and independent and capable to be on my own. I sometimes forget who I was before I became a Mom and then a caregiver to Jim. What do I enjoy? What am I capable of? Who am I now? Who will I be when all of this is over?

I am lost. Really. I know when people see me they think I am doing so great considering our circumstances, but I am not. Not by my standards. And that is the problem. My standards for myself are pretty high. Always have been. But I can’t do it. I can’t be the person I was. I can’t do it all. I can’t keep my mind clear and focused and be the best I can. I am the best I can right now, but it isn’t my personal best and it isn’t acceptable. And because I know this, it bothers me.

There are days that I have so much I need to do, so much running through my mind, that I just shut down. I don’t cry and I don’t feel sorry for myself, I just shut down. I don’t do ANYTHING. And then I am upset with myself for not doing ANYTHING, and it becomes cyclical. Even worse is the fact I am completely aware of my new shortcomings.

I am strong. I mean, I am a strong, independent, capable woman. Or, I should say I was. When Jim and I met and married, I eventually made more than he did. It was our decision for me to stay home with Frances and try different gigs out of the house so I could be a Mom first. We had enough to live on with just his salary and we were both fine with that.  It was never an easy adjustment for me and Jim was really always the better parent, even though I was the one home all day with the kids. He was supportive and understanding and not once complained. When I would meet him at the door with a kid and tell him he was five minutes late and he was on duty, he loved it. He loved being a dad.

Even now, as he declines into his own abyss, all he continues to tell me as he cries, is that he wants to watch his children grow up. As he can’t recall their names, he knows he wants to be there to be part of their world and witness their growth and maturity.

I can’t take it. It is unbelievable painful to stand helplessly by as he declines and becomes a complete stranger to all of us who love him.

Just as difficult is to figure out where I fit into all of this…. What is the right way to navigate all that is thrown at me daily while staying his wife, staying a mom, staying a friend, staying ME?

I realize that I am morphing into a whole new entity. I don’t care about going out anymore (HUGE change for me). I don’t care about the latest movie or TV show. I don’t care about keeping the house clean….yikes. So embarrassing. My parents came for a visit recently and I didn’t clean one thing. NOT ONE THING!! Not a bathroom. No vacuuming. No dusting. Nothing. I have had them visiting me since that infamous drive across country and there has NEVER been a single time I didn’t clean and get ready for their impending visit. Never. Now, I can’t seem to find the wherewithal to do much more than change their sheets, which I didn’t do until after they arrived. Embarrassing and telling.

No, I am not the old Karen. But I know I am not the Karen that eventually will be. I am in a holding pattern. Not sure I am crazy about the Karen I am, but I have to accept there are major changes and events going on and I have to give myself some slack. Not an easy task. I am trying. I am working constantly on finding me while holding onto the task at hand.

I am grateful for the strength I possess. I am so very, very grateful to friends who understand and accept my changes. I am indebted to my parents for continuing to love me unconditionally. How are people who aren’t born with an inner ability to find that power and resilience able to handle this horrible journey? I don’t know. I am barely surviving and can’t imagine being able to without my natural fortitude.

Stay strong. Stay you when you can and when you can’t, forgive  yourself and know you will be you again someday. Maybe a different you, but a stronger and more resilient you. Repeat.

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)

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)

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)

Happy What?

Ice Skating, Dec. 2014.

Ice Skating, Dec. 2014.

There have been so many wonderful things that have happened in my life over the past month. But there have been so many horrible, ugly things too. I feel as if my life is one big oxymoron.

I am overwhelmed. Not just by holiday stresses. Those are actually a few things that pull me away from the normal stresses. Yes, stringing lights on the tree by myself versus the way it has been for the past 18 years sucked. Yes, shopping for everyone (including myself) by myself, sucked. Yes, there have been moments of extreme bitter nostalgia; when you remember how it was and realize it will never be that way again and you just have to keep moving on, but it doesn’t mean you like it and it doesn’t mean you are happy about it. You just do what you have to do.

There are times that I think the kids being so young while dealing with Jim makes it so much harder. And I think how much easier it would be if they were grown and on their own. But, there are more times that I realize them being part of our home right now, in this moment, saves me over and over again. I probably wouldn’t care about a tree or decorating (honestly, I only did about a third of our normal this year) and I probably wouldn’t sing along to songs on the radio quite as much and I am pretty sure I wouldn’t give two cents about watching any Christmas movies or seeing Christmas lights or even worrying about family traditions. Traditions I realize at moments of clarity are dwindling but I steadfastly cling to in the hopes of stabilizing their childhood. Traditions that have become more of a burden than moments of fun and familiarity. I struggled to get the tree from the same tree farm. I struggled to have us all decorate said tree. I struggled to do so many things that have become part of what our family does every year. But this year, I have secretly thought to myself, “Will I do this when Jim is gone? Will it matter and will we all want to do this? What is the point?” It is hard not to picture our life without him when he is still here, yet he really isn’t here, so it makes it somewhat easy to picture a life without him. Again, my life is one big oxymoron. How can he ice skate so beautifully, yet not be able to figure out his seat belt buckle? How can he walk the dog numerous times a day, yet not realize he is still in his pajamas? How can he eat like a horse over and over and never seem full or gain weight? How can he be slipping away from us so steadily and yet so slowly? It is all so confusing. How does anyone manage to live through this for years on end? How can I? How can the kids?

Frances asked for very few things this year for Christmas. Less than five things.(Actually both kids had extremely short lists compared to myself at their age) One of the main things she wanted was to see The Piano Guys in concert. When she first mentioned this, I had no idea who they were. I had never heard of them. So I went online and saw they are  a pianist and a cellist. They play beautifully and their closest concert to us was 4 hours away (with a good day of traffic. For us it would be 5 -6 hours). I contemplated for a very short time before deciding if my thirteen year old daughter wants to see musicians like this as her main gift, well, I am going to make it happen. So, I got tickets for her and I. She would have to miss a day of school, so I didn’t want to add Brad to the mix. About a week out, I realized,” Oh no! I need to have someone watch Jim and Brad!.” That’s right. I hadn’t thought everything through. When I bought the tickets, Jim would have been able to stay the night by himself with Brad just fine. But as time has moved forward, so has his Alzheimer’s. I cannot possibly put into words the sheer heartbreak I felt when I accepted the fact I needed to come up with a solution for that night away. It was no longer just a boys night alone. It was an ordeal and something much bigger than a simple concert. It was a new stage of our game. It was another slap in the face.

So, a friend stepped up to take the two boys. Another friend eagerly watched the dog. It was a lot to plan and organize. In the end, it was worth it. I think Frances and I needed this time away together. It was special in so many ways and I am grateful for being able to do so. We were finally to our hotel when I get a call from Brad. Jim didn’t want to go to our friends’ home (we have been there dozens of times) and he was getting irritated. The friend getting the dog called and reiterated what Brad had told me. The stress that flashed through my body is immeasurable. What could I do? I was 4 hours away and unable to help. Both friends told me to not worry about it, they would handle this and to enjoy the show. But how could I? What if they regretted agreeing to help us? What if this turned into a huge pain for them? What if this is the night that Jim decides to get violent? When I spoke to Jim on the phone, he told me he was fine, never complained a bit about going to stay with someone else and showed no signs of being upset. So weird!! I had wanted to take Frances for a nice meal, but we were running late due to traffic and we ended up getting something quick and heading to the show. We got there after they had started. I could feel myself screwing up the one thing I was trying to do right. I was in a state of panic. Running late and worrying about things back home. It seems that is the normal for me now. I do this on a daily basis as I work and try to keep tabs at home. It is the most stress and the most failure I have ever felt in my life.

The concert was great. I highly recommend them. As we sat and listened to their show, they played a song, Emmanuel, and I listened with such sorrow. It was beautiful and haunting and reminded me of Jim and our love for each other and the fact that I was taking this trip without him because it would have just been too much. As I listened to the sweet sounds, I thought of our plans for the future and past Christmases and how I wondered if he would be with us next Christmas. I looked around at the couples and the families and I hated the fact that our family will never be completely whole again. Yes, Jim is still with us, but in truth, he isn’t. Not the real Jim. Not the Jim that would laugh and participate and want to be part of decisions about what we were doing and what everyone was getting and even acknowledge there is a holiday among us.  I am lonely. I am sad. And I have had a really bad hand dealt to me and to our family. But, I can see the love our friends surround us with. I can see how blessed I am to have my parents to help us. I feel love from perfect strangers. I am forced to re-write our story on a daily basis and I must understand that my attitude and my point of view will determine if that story has a happy ending or not.

I wish you a very Merry Christmas or Happy Hanukkah or Happy Kwanza or just a perfectly peaceful time of year. We all need some peace in our soul and I send it to you and wish it for you. It will be what saves us all.

Frances and I at The Piano Guys concert. Dec. 2014.

Frances and I at The Piano Guys concert. Dec. 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 (12)