A Day in the Life

 

Frances and I  April 2002.

Frances and I
April 2002.

“Um…. I…. Um.…Did you….What am I….. Uh… I….uh.”

“Yes, Jim. Go ahead.”

“Uh, the front. Uh…. do you want me to….ummm….the front.”

“The front yard?”

“Yes.”

“What?”

“Uh, the uh part like a fur collar….Uh. Mmmm. By the flag. Like a collar. Uhhh…fur collar around.”
“The boxwood hedge?”

“No.”

“The liriope?”

“No.”

“The part,….uh, the part….fur. Fur collar. Um….Around……Around the uh, around the front tree.”

“The liriope is around the tree. That must be what you are talking about. The stuff that looks like long grass?”

“Yes.”

“That is liriope.”

“Do you want me to trim it?”

“No. You do that in the winter. You did it in Feb.”

“Oh. Ok.”

Another conversation that shows Jims’ decline. Another heartbreak. Another slip into a future that I am not looking forward to and don’t really want to live through.

Another frustrating situation for both of us. He is frustrated trying to explain himself and I am frustrated trying to understand him. The kids are frustrated. We joke that it is a game of charades, but you can only laugh so much at the fact your father cannot explain a simple thought to you.

I am in a constant state of despair. I just don’t have any answers and I don’t have an easy way out. I don’t see anything that will make this plight an easy one. An uneasiness seems to haunt me. Finances. The house. The yard. The kids. My job. Jim. His decline is on a more steady course than in past years. It is noticeable. It is impossible to ignore. There is a feeling that stays with me now; it is unshakable. A feeling of being in trouble. Like when I was a teenager and I knew I had done something wrong and it was only a matter of time before my parents found out and I would soon be in trouble. No matter what I am doing, who I am with or where I am, a sense of imminent doom looms overhead.

Brad and I  April 2008

Brad and I April 2008 Thank you Patti Brown for this perfect photo.

What have I done? What can I do different? How can I get out of this and save us from the terrible future ahead? What am I doing wrong? Should I have gone back to work sooner? Should I have saved every penny we ever made? How am I going to take care of me and the kids? How am I going to take care of Jim and work full time? What kind of person will I be when all of this is over? Will it ever be over? What kind of person am I for thinking this? I am horrible. I should not be thinking about me and my future. I should only be thinking of Jim and the kids. But, what am I going to do about the kids? What if the kids get this one day? Oh God. No. Please. Please don’t let my babies get this. I couldn’t take it. I would rather die than watch them succumb to Alzheimer’s. I might as well quit right now. I have to do something. What can I do?

Talk Karen. That is about all you are good at these days. Talk.  Get everyone you know to write their Congressmen. March up to D.C. again and don’t leave until they have a cure. Move to D.C.  Start a war like they have never seen. Wait. I can’t do that. I have to take care of Jim and work and take the kids to practice. Ok, then get everyone else to do that too. Will they? Will others care that my kids, my life, will possibly be taken from me when they are older? If they were getting this now, when they were young, people would care. But they will still be my little ones even when they are grown. They will be all I have left. Why can’t everyone see that? Why can’t everyone in the world stop and listen and care? Why can’t some really rich billionaire who spends thousands of dollars on a single dinner just give a few million to this? Wouldn’t they do that if it was their own children at risk?

What do I have to do? I can’t let them get this. I can’t not do something. What am I going to do for dinner tonight? I don’t think we have anything in the fridge and I don’t have time to go by the store. I could ask Jim to run to the store. Oh. That’s right. He isn’t driving anymore. I wonder if I took his license too soon. No, I did the right thing. I wonder if the kids have gotten their stuff done.I wonder if Brad read and if Frances cleaned her room.  I should call the house. Oh, I can’t. I have to call back Mr. Jones for work. I am tired. I wish I could just go home and take a nap. I wish we had a screened in porch so I could sit and take a nap in it. Uggh. I still need to sort a load of laundry and pay those bills that came in last week. Wait. Wasn’t it Jen’s birthday? Did I call her? Yes. I think I did. No. I might not have. Did I call back Melissa? Didn’t she call me and leave a message? I think that was a couple of days ago. Oh my God. My memory is getting as bad as Jim’s. What will I do if the kids get this one day and I do too? Who will take care of them if I am sick? What if I get in a wreck? Who will take them if I die now? What if Mom and Dad die right after I die? I need to make another appointment with the attorney and get that settled. Who should I make guardians? What would happen to Jim? Would the kids know I loved them more than anything? I should write them both letters. I don’t think Jim ever wrote those letters to the kids like I asked him to. What if I get cancer?  Who would take care of me and the kids at the same time? Mom and Dad would, but that would be a lot on them. What would I do with Jim? I can’t get sick. What if I do die though?

Who would pick up the fight if I am not here to do this? I wonder if any of my friends would? I wonder if the kids would? I need to do something. Maybe I should go jogging when I get home. I can’t. I have to start dinner and I need to work on those pictures from Alaska and I need to straighten up my desk and I have the book I am trying to read and I would really like to sit on the couch and watch a movie. Yes. A movie and a cold beer would be nice.I haven’t sat and watched TV in a long time. I think it has been a few weeks. What was the last thing I watched? I can’t remember. Maybe I will do that. I deserve it. Wait.  We don’t have any beer. I need to go to the store anyway. I wonder what I can fix for dinner tonight?

Frances and Brad. Vancouver. July 2014.

Frances and Brad. Vancouver. 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 (15)

Epiphany Time (Again)

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It’s been a rough week or so. This shouldn’t be much of a surprise because, well, my husband has Alzheimer’s Disease. I am fully aware of what is happening in his brain. I am fully aware that much worse is on the way. Yet, unbelievably, I am shocked when he is unable to recall what I just said or he no longer understands he is drying the vehicle instead of washing it, with a polo shirt and not a rag. At what point will I throw my hands up and just accept this fate? At what point will I just give in?

I started to realize a while back, with an unbelievable amount of guilt attached for good measure, that I am feeling trapped. Like a woman forced to endure a loveless, pre-determined marriage arranged by others. There is nothing lost on me at how this sounds. I understand that Jim has no control over his actions or his lack of ability to communicate or contribute to our relationship.  So, not only do I feel like I am in a situation where I have no say or have no way out, I then feel like a complete and utter ass for being such an un-understanding and un-accepting, un-docile wife. Yet, I recently had an epiphany: MAYBE JIM FEELS TRAPPED TOO. Huh? He did say something last year about wanting a divorce. It had come completely out of the blue while we were setting the table for dinner. He said he wanted one so he could move into his own apartment and not be a burden to the kids and me. At the time, I felt it was so noble and just like him to be thinking of us and to be searching for a way to make it easier for us. Now I am finally thinking a little more about his point of view…He does have to put up with ME and my abrasive reminders to change the clothes he has worn for two days or fix his belt that is not through all the loops and to shave and to tie his shoes or to eat lunch. Poor Jim is constantly being told what to do and now how to do it. I wouldn’t like that life very much. I don’t think Jim would (does) either. But (there is always a “but”) if I don’t tell him what to do, he walks aimlessly around the house searching for something he never seems to find. He has told me over and over that he wants me to tell him so he can do something. He tries to write everything down, but lately he can’t make out his own handwriting half the time.

I am not cut out for this. I am not patient and understanding. I speak my mind and move on. If my heart breaks; I want to cry, scream, rebel and get it out of my system. Then move on. If someone hurts me or misrepresents themselves or turns out not to be the cool person I thought they were, I have learned to cut my losses and….MOVE ON. But I can’t move on. I must stay in each moment and repeat myself over and over. I must steel myself for recurring heartbreak and frustrations. Then I must pretend that I don’t mind. I have never been good at pretending. I am supposed to accept this fate and somehow make lemonade out of lemons so our children have somewhat decent childhoods. All the while, let’s not forget none of this is really about me; it is about a wonderful, hardworking, intelligent, talented man who has been dealt the crummiest hand of all.

Now, epiphany number two: I am a horrible Mom. Not all the time. Just part of the time. For two reasons. The first relates to the previous paragraph. What fabulous Mom berates her children’s father? Enough said. The second reason is one that deals with time, money, stress and lack of “taking the bull by the horns”.  I noticed last week (because my 13 year old daughter, who I now realize takes on waaaay more responsibility than any 13 year old girl has the right to deal with, was away) that I was leaving my 10 year old son with an adult that could not react if necessary in an emergency; could not remember if they had eaten breakfast or lunch and didn’t really understand the concept of fixing something semi healthy; could not remember where our son was when he left with a friend; could not take charge enough to keep said son focused on the few things he was tasked to do while I was at work. Instead, he did exactly what any normal 10 year old little boy would do: played games, kept his pajamas on and watched videos and sports on tv. My head almost exploded when I arrived home from work to see that my list of things was not done by Brad, Jim had no clue where he was and couldn’t recall what had taken place that day and it became crystal clear to me: I now knew that Jim was not a responsible enough person to watch a 10 year old and if I left them alone again it was now officially on me if something happened. Talk about hitting a brick wall.

And my Mom wonders why I love beer so much?

So, this week Brad is in a camp, Frances is back and I am trying to make sure she just focuses on getting her own stuff done;  keeping an eye on Jim and the dog a little bit. A little bit. There is a very fine line that I am trying to draw around her to make sure she doesn’t get burdened with too much, yet contributes appropriately enough to make life a little easier on me and to help her understand the responsibilities that lie ahead for us all. She and I were walking after going for a jog together  last night and she was telling me how nice it was to get away and get a break from “all of this.” I could certainly understand her sentiments. But it was sickening to me that my first born was searching for ways out too. What terrific parent has a child that likes getting a break from home life? Isn’t that what TV movies are made of?

None of this is fair. I am stuck. The kids are stuck and worst of all, Jim is stuck. None of us have a way out. We only have each other. And with each other, we will make it through, but it won’t be as pretty, as happy or as idealistic as any of us would like or have wished for.

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)

We are a TEAM!

 

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When I started this blog a year and a half ago, I had no idea what would happen. Would people read my words? Would anyone care about what was happening to our family and in turn so many other families just like ours? Would I be able to make a difference? How much of our personal life would I be open and honest about without exposing too much? Would this harm our kids? Would I lose friends? Would I be found out as someone who still can’t remember correctly where to put that apostrophe? Would I embarrass the kids or Jim? So many “what ifs” floated by and of course there really wasn’t a clairvoyant who could tell me what would happen.

It didn’t take long before I became aware that there was a huge number of people who were struggling with Alzheimer’s Disease and everything that goes along with caring for someone with AD. These souls needed to feel connected and somehow a little less alone. I am so very proud of the fact I have been able to fulfill this need for so many around the world. Yes, around the world. So, I sit in front of my computer, day after day, week after week. I pour over heartbreaking stories and feel less alone. I see the angst and suffering that so many of my comrades feel day after day. Desperation. Loneliness. Heartbreak. Determination. Grit. I love, Love, LOVE the correspondence that shows up in my inbox daily. I am so appreciative that anyone who feels the weight of the world on their shoulders would take the time to read my words and then take even more time to write to me….well, I am just honored.  I write from my heart; as I would speak to a friend. A confidante. Someone I want desperately to understand my side of things and simultaneously learn what it is like to be afflicted with this shitty disease that takes away each and every aspect of your humanity. I do this to educate and to support. I do this because it heals me.

I recently received another letter asking for my advice. This is a compliment to me but let us not be fooled: I am experienced in dealing with the early phases of Alzheimer’s Disease, but I am by no means an expert. I can barely pronounce many of the medical terminology associated with dementia. I seldom can repeat verbatim what I have just read or heard when it involves scientific jargon. I get the gist. I comprehend. I get overloaded when I read too much research and information online. Just because I live with someone who has this disease does not mean I am qualified to tell anyone else what to do. One thing I have learned over and over; Alzheimer’s affects each patient uniquely. Drugs work differently. Outlying effects happen. Strategies and opinions abound.

Hi Karen! I remember reading that Jim no longer takes aricept (not sure about namenda) and I was wondering what his Dr. may have said about that. Did you ever see any benefit of it for Jim in the beginning and how long was he on it? Dwight has been taking aricept for over 4 yrs and namenda for over three years and he seemed to stay about the same for maybe a year after starting the aricept……then the decline seemed to escalate. As you know it’s very expensive.  I wouldn’t be as concerned about the cost If it did any good at all, but when he started the aricept the Dr. said it would only slow down the progression for about a year……….if that’s the case, why are they still prescribing it to him? I asked a pharmacist about it recently and they couldn’t say one way or another……and that probably wasn’t the person to ask. After all they are making money off of it, right!?  Dwight’s next appt at Sanders Brown Research Center is in August and I’ll bring it up to them………but I’d love your input.  Dwight has never been one to take any medicine…….just toughed it out :) , so I hate the fact that I’m giving him all this stuff and he’s getting no benefits from it that I can see. What if they tell me he’ll go downhill faster if I quit……..could that be the case? I’m just afraid of doing the wrong thing.

I share this letter because I know, yes, I know so many others could have written it. MANY could have. MANY have. So many of us who are trying to figure out what to do are desperately searching for answers. I have very recently realized that even though I said a vow to honor Jim and to stay with him in sickness and in health, I now understand I am responsible for him. If he gets lost. Me. If he doesn’t eat. Me. If his shirt is on inside out. Me. If he loses his glasses again or doesn’t clean his toenails or take a shower. Me. Me. Me. Yes, we all agree and understand our vows on our wedding day, but we have on rose colored glasses and we never think that our loved one will no longer be able to understand finances or will become unable to discipline the kids or carry on a conversation with neighbors.

So, I understand the desperation in each and every message I receive. Thank you for thinking so highly of me, but I am afraid I can not help you. I can only share our own personal experience. What I do encourage everyone to do: ask your doctor. If your doctor does not give you satisfactory answers, find another doctor. Find a support group. Ask every member of that group about their doctors and about what medication/treatments they have tried. Look online…there are some wonderful Facebook groups to seek out answers. Ask, ask, ask. Then be quiet and listen. Listen to what they have to say and then determine how it will help you with your dilemmas.

Our first neurologist was not anyone that I would recommend. So I asked around and found a new one. I feel as if I am Jims’ advocate. It is my responsibility to make sure he is heard and paid attention to. When he lost a lot of weight after being on Aricept, I spoke with the doctor and took him off (after many other tests came up negative). When Namenda and Exelon showed no improvements, I spoke with his doctor and took him off. Either way, do your own research. If you read about any drug used to combat the symptoms of Alzheimer’s Disease, you should find that these pharmaceuticals do not promise or intend to cure. They will help stave off symptoms for about a year at best. The patient will eventually end up in the exact same place they would have been without the prescription. So, the question remains….how can you determine if the drug is helping? Would they be declining more or less without the drug? There is no way to tell because this disease does not affect everyone the same. Time frames and symptoms vary as do the lengths in between changes. Not every patient has side effects. I have sat in support groups and at symposiums and listened as caregivers tell about positive changes seen when drugs were started. And I have witnessed firsthand this not being the case.  There is no way to know. You must do the best you can and know that your decisions are coming from a good, honest place.

Unlike most illnesses, there isn’t a “normal” course of action. Caregivers have a lot of leeway and a lot of input. Unlike a family who faces a battle with cancer or a heart attack, you do not visit an expert, choose a course of action, start fighting the battle, return for treatments and tests on regular intervals and have the possibility of a win. When you receive the horrible news that Alzheimer’s Disease has made itself at home in your brain, you have no options. No surgeries. No treatments that will lead to a cure. You have a doctor’s appointment in 6 months.

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

Alaska!

Posing by a gushing waterfall in a rainforest in Juneau.

Posing by a gushing waterfall in a rainforest in Juneau.      July 2014.

First things first: Our trip to Alaska was great. Great in the sense we got away from everyday life and got to see some absolutely AMAZING sights: Glaciers, Bald Eagles, Orcas, Humpbacks, Otters, Seals. Just breathtaking mountains of snow, trees, mist, clouds and water all rolled into one.

We had never been on a cruise. Actually, no one in our family has ever really wanted to go on one. When we first started talking about visiting Alaska, we were going to fly there and do our own tour of the state. Prices and Alzheimer’s Disease changed our agenda. After much thought and discussion, I decided (notice the “I”) we would forgo our previous plans and go with the cruise option. We would join all the other tourists at the port of calls and try to find our way among the masses versus venturing out on our own for parts unknown.

I have been asked several times since our return if Jim enjoyed himself. Yes. Yes he did. As much as you can tell, he did. Since Jim is no longer showing much emotion or throwing out many comments, you must listen and observe closely. As my Mom told me, “That is the most excitement and emotion I have seen from Jim in a long time.” She was right. As we emerged from the rainforest we were touring, into the sights of a huge, beautiful, blue glacier, Jim exclaimed, “Oh wow.” Perfect sentiments, but unusual at this point with him.

Searching for moose outside of Anchorage, Alaska. June 2014.

Searching for moose outside of Anchorage, Alaska.             June 2014.

Many times he just sat and watched the beautiful scenery float by. He seldom said much about what we were doing. But there were smiles and times of excitement that we don’t get to see anymore while at home. There were also the times he got lost on the cruise ship. Even I had trouble at times, and I am good at navigating. But he got stuck on a floor and couldn’t figure out how to get back to our floor even after calling a few times. Eventually my Dad went to get him, after we  had been searching all over the ship for him. It was frustrating and sad. We all felt bad. Jim didn’t seem one bit bothered. It is our new normal. It was a lesson. We learned that he couldn’t be left alone at all and needed to be with someone, even it was one of the kids, at all times. Sad. Annoying. Emotional.

One night, I was sitting in our cabin while the kids were out meandering around with their new friends. Jim was slowing searching around the cabin. Eventually, he sat on the bed and started to cry. I didn’t understand immediately why. So I asked him why he was crying. “Because everything I do from here on out is going to be the last time I do it. Everything is the last time.” He was having a moment of clarity. He knew why we were on this trip. He knew he wouldn’t be coming back. Even if the kids and I eventually did.

Later, on the last day of our journey, Jim seemed content. He was happy. He was awake and alert and enjoying himself. We all were. He hugged me and thanked me for taking him to Alaska. He thanked me for being a good wife and taking care of him. And he cried again. But these were different tears. Sad but different.

Jim and Brad enjoying a beautiful sunset on the ship. July 2014.

Jim and Brad enjoying a beautiful sunset on the ship.          July 2014.

And I waited. I waited until we had gotten home. I waited until we had survived the red eye flight and had started laundry and had unpacked our bags. I waited until I had the rare moment alone. And I cried. I cried because I was spent. I was emotionally and physically spent. Even after taking a wonderful vacation, I was tired from the psychological strain of making it all perfect and figuring out schedules and payments and keeping track of people,  places and things. I was done. Then, that night, I had to work. I had to do laundry. I had to worry about dinner. I had to make sure Jim and the kids were ok. Life was back to normal.

I failed again. I failed Jim. The week prior to our departure, I went over everything that needed to be packed with him and the kids. Multiple times. As a mom, I seem to repeat myself over and over again. It is annoying to everyone involved. I checked Brads’ bag. My Mom checked Frances’ bag. No one checked Jims’ bag. I (mistakenly) assumed that telling him over and over to pack sweatshirts and jackets and cool weather stuff would suffice. I was mistaken. He had shorts and t-shirts and polos. It was chilly. Thankfully, , my Mom bought him an Alaska jacket on the first day and he had that to wear each day. But, the real problem was I knew that I should check his bag. I knew it is no longer enough to remind him over and over what to do. I must go behind him and double check. The Fourth of July t-shirt I purchased him? No where to be found. Even though I had reminded him numerous times to pack it. It is such a deceptive disease. You think you can get away with letting things go but you really can’t. They sneak up on you and bite you.

So, we had a wonderful time but there were supreme heartbreaking moments. Moments that are part of our journey but normally not part of vacations.

Thank you so very much for all of the well wishes and support after my last post. I appreciate your words of encouragement and they helped me. It was a memorable journey.

Standing in front of the Mendenhall Glacier, near Juneau, Alaska. July 2014.

Standing in front of the Mendenhall Glacier, near Juneau, Alaska. July 2014.

A couple of days after our return, I was laying in bed and Jim came and sat on the edge of the bed by my feet. He started rubbing my feet and I had my eyes closed. If I let myself, it could have been years ago and all this talk about Alzheimer’s Disease could easily be a nightmare that others live. But as I tried to meld into a different time and place, I was snapped back into our reality. I heard a sniffle and then a sob. As Jim sat rubbing my soles, his soul was opening. I asked him what was wrong. “I am just so tired of not being able to remember anything.”

“Well, you remember our trip we just went on, right?”

“Yes.”

“Where did we go?”

Silence. My breathing became a bit shallow and I began to curse myself for asking. Did I really need to put him through this torture and myself as well? But I knew he knew this answer.

“I can’t remember the places.”

“But you remember the state. What state did we got to?”

“Alaska.”
“Well, that is all you need to remember.”

“I wish I had all the places I went with the IG team still. I think that one pier we were at, looking out at the water and the birds was really familiar.”

“Jim, you never went to Alaska. That was one of the main reasons we went. You went to Seattle.”

“Hmmm. It sure did look familiar, like I had been there before.”

“Well, we have lots of pictures and we will help you remember.”

“Thanks. I love you. You are a great wife and I am so lucky. Thank you for being such a good wife to me.”

Jim looking out from our balcony. July 2014.

Jim looking out from our balcony. 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 (19)

My Travel Partner

Jim and I during a rafting trip on the New River in WV, Sept. 2008. This is during our zipline fun.

Jim and I during a rafting trip on the New River in WV, Sept. 2008. This is during our zipline fun.

Soon, we are going to fulfill part of Jim’s bucket list. We are headed to Alaska.

I should be excited. I should be looking forward to this vacation….time away from work, chores, “life” in general. But I am not.

I am completely aware that there are many others who would be joyfully elated at the idea. I would have too a few years ago. But we are headed NOW to THIS place because my husband is afflicted with a terminal disease. Although I have always wanted to visit Alaska, this trip feels bittersweet and forced. It is probably our last big family vacation. I try not to think of it that way, but the truth hurts and is hard to hide. I often feel like I have to justify our expensive trip to others with this explanation.

We were going to try to go last year. Someone promised us a place to stay and airline tickets. But, for various reasons, it didn’t happen. With Alaska, your window of opportunity to visit is small. With an Alzheimer’s patient, your windows of opportunities slowly slide by in increments of immeasurable speed. Jim has declined quite a bit since last year and it is hard to keep from being upset we didn’t go when originally planned. I have only myself to blame. I knew deep down inside we should have gone then, but it was easier to put it off and wait. He would have enjoyed the trip much more and it would have been much easier for all of us.

As it stands now, Jim gets a little confused on where we are going. When we talk about it and he is reminded we are going to go find him a moose in the wild, he is happy and excited. Otherwise, there is no mention or emotion about our upcoming adventure.

The packing, the planning, the saving, the organizing of animals and schedules and everything else is squarely upon my shoulders. Boy, don’t I sound like a whiny, ungrateful person? I am grateful, I am just also sad and a little overwhelmed.

It is hard to be excited or appreciate our upcoming adventure when there is still so much to do and details to follow up on. I am hoping once we are packed, I have everything done and we are on our way, I will be able to let a sigh go and will feel a sense exhilaration.

On top of feeling deflated and somewhat regretful, there have been a few comments made that stung.

Not long after I started this blog I received a message from a woman who had cared for her husband at home along with her children. She talked about watching all of her friends travel for years and being stuck at home. Since he passed, her and her children had started taking all the vacations they couldn’t for so long. She told me how some of her “friends” made snide comments and were so jealous they couldn’t be happy for her. It was very painful for her to realize that she had friends as long as they were able to do what they wanted but when she could do as she pleased, she was alone.

I remember thinking at the time how awful. I also felt she sounded a little bitter and I never wanted to sound like that. I never wanted to complain about others. I wanted to keep the focus of my blog on our ups and downs throughout our journey and help educate. Here I am, just over a year later completely understanding how she felt. It amazes me how people can be envious of you when you have a spouse who can’t recall if they took a shower or remember what they ate for lunch. I get it though. Aren’t we jealous of people driving fancy cars, even if they are driving them alone? Aren’t we envious of the couples in beautiful homes even though they are living in separate parts of the house from each other? Aren’t we turning green when we see someone else with the newest gadget we have been coveting even if they are over drafted in their accounts?

Just this week, I mentioned to someone at work we were going to Alaska and she started telling me about her brother and his family visiting there recently.  They went on lots of excursions and saw lots of things. As she was telling me all they were doing and seeing, I kept thinking how rich they must be; how expensive all of that was. I could sense a little jealously creeping into my soul. Then she went on to tell me they had been saving for a really long time and wanted to get everything in they could because they probably will never be back again. Then, I felt like a spotlight had highlighted my own shortcomings. I fell victim to the very tendencies humans have that I loathe.  99 people can tell you how happy they are for you and be completely sincere. It is the 1 person who casts down a shadow that covers that joy and happiness and causes you to lose sight of the bright side. Why? Why can’t we ignore that naysayer and focus on the 99 smiles and cheers?

We have been saving for over three years. We have had family and friends help. We have cut corners where we can. We sold Jim’s car and used every penny for this trip.

Yet, I am judged for taking time off work. I am judged for taking a vacation and doing something wonderful with my family. I am judged for spending so much money.

It is hard to fight back without sounding petty and bitter and immature. I struggle to rise above. I struggle to stay focused on what I should be focused on; making memories with my family.  Words hurt when they are said, no matter what the circumstances.

I am not looking to be a martyr. I am not looking to sacrifice so I can brag.  I work hard. I like to play hard. Jim was the same way. I don’t see why we can’t do the same for as long as possible while he still can. Those days are numbered. Besides, I am constantly being told to enjoy him while we can. To take care of me and to get away whenever possible. Now that we are, I am made to feel like I am underserving.

I know it is hard sometimes to be happy for others. I know it is hard to bite your tongue. But, I think we ALL should try it a little more often. Myself included.

We may still be able to do some weekends away and hopefully our annual tradition of family camp, but this will be it for a family exploration trip. That is hard to think about. It is hard to celebrate a journey we will take for reasons I don’t want to believe. Traveling has always been a huge part of Jim’s life. He has been all over the world. We have always dreamt and discussed all the places we would visit someday.  Over the past few years, I have caught myself saying “when the kids get older we can go….” Or “when we retire we can visit….” Typical conversations that we had over the course of our relationship. As soon as I would start to verbalize these thoughts, I quickly remembered they will not come to fruition and it becomes an awkward realization for us both. From the first night we met we had a common interest of wanting to tour places we had yet to visit.

This disease it robbing me of my travel partner. My dreamer. My adventurer.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (20)

My Saving Graces

Brad and Frances showing some sibling love. May 2014.

Brad and Frances showing some sibling love. May 2014.

I have been feeling a bit overwhelmed lately. There are many parts of life that can stress a person out and at any given time period those stresses can correlate together to cause anxiety and trepidation of mass proportions. I believe that I am currently smack dab in the middle of one of these rare, but inevitable collisions of foreboding uneasiness.

My body is in a constant state of tenseness. But I am not sure if it is physical tenseness and unease or mental. It is always mental, so I will go with that. But then my physical self is under attack. I am forgetting mundane things. I am constantly feeling as if I am in a rush. A rush to be somewhere. A rush to remember something I have forgotten. A rush to have a plan. A rush to be ready for whatever is coming at us next. I can’t relax. I feel a weight on my chest that doesn’t shake. Even if I am not particularly stressed at that very moment. Sometimes, while I am just driving down the road, I can feel as if a heavy load has been placed on my lungs and I am fighting the tightness that surrounds my rib cage and wondering what triggered this unnecessary reminder of my current predicament.

There have been a couple of realizations that have crept into my viewfinder recently. I have realized that at some point in the future, I will have to watch as my children cry, scream, rebel and recoil at the fact they have lost their father. Their parent. Someone who can’t be replaced. Someone to count on. Someone who was there for them from the very beginning. It dawned on me one day that I was going to be the one to hug them (or try to), to listen and to just let them cry. I was watching a movie where the mother was killed. As I watched the father and daughter on the screen, I could only see my two precious kids going through the same process. My mourning will have to wait. Yet, I understand that I have been mourning Jim since the day we first found out he was cursed with this insidious disease.

Another realization: I will have to determine when Jim can’t be left alone. Not just at home. Anywhere. Right now I sometimes drop him off with the kids to practice. He enjoys getting out of the house and loves watching them play ball. But I realized that at some point, I will be dropping him off and expecting the other parents at the field to keep an eye on him or to “watch” him. Not yet, but sometime soon or sometime in the near future. Who knows when? Then I will be forced to keep him home more, or hire someone to be with him. It all gets so complicated.

I realized that I don’t make enough to pay for someone to watch him and pay our regular bills.

I figured out that I will be alone for a very long time. I already feel alone 95% of the time. I am not a loner. I am a people person. It has been so difficult to lose my conversation companion. I am desperate for a connection, yet I have no idea when or if I will ever have one again.

I clearly see Jim progressing. Our friends see it. The kids see it. I sometimes wish we could speed the process up because it feels like torture. Pure torture. Like a single water drop hitting your forehead and then sliding across your face, slowly and unwavering and your hands tied and unable to wipe away the uncomfortable sensation. And as quickly as those thoughts enter my mind, a wave of guilt, unbelievable guilt and shame overcome me.

So, here I am. Wondering aloud how long our family will endure this Hell. How do I stop the constant state of self loathing and complete physical and mental overload I feel 24/7?

Right now, the only thing that really keeps me moving forward, getting out of bed, focusing on anything positive are Frances and Brad. What else do I have? Without them, I would have less worry and would be able to handle our situation in a much different manor. Yet, they are my saving grace. They are my reason for fighting. They are my mitigating comfort in life. It seems that I am in a constant state of capriciousness. Only time will tell how the final scene plays out.

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)

What a Friend Jim has always been

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I recently received a wonderful, yet tear rendering e-mail from an old, dear friend of Jim’s. I love hearing from his friends. It helps me to recall who Jim was when we met. It helps me remember the man I met, fell in love with, married and still live with. In our new life together, it is often difficult for me to stop, re-focus and see the man sitting next to me was in charge of millions of dollars worth of government equipment and a star in his field in the Air Force. I know these things yet with each day he progresses into a disease that robs him of abilities, it also robs me of my clarity of him. Thank you Jorge for writing and for still loving a wonderful man and friend to us all.

These are my friends Jim and Karen.  Please read and watch as much as you can.  Jim is my buddy from the Air Force.  He was also my volleyball and basketball partner in the Air Force…we would take on anyone no matter how good they were…we always thought we were better.

Jim and I met in Bremerhaven West Germany in 1987…ever since we have been best buddies even though we were only stationed together once in our Air Force career for less than 3 years.  

Jim is also the reason I never took up racquetball, even though I thought I was a very decent racquet sport player.  The first time I stepped foot in a racquetball court he humiliated me to the point I never stepped foot in a court again.  He was that good. The year I played with him he was number 2 or 3 in the Air Force in Europe…deadly with a racquet. I wear that as a badge of honor.

Jim came to my house on Christmas Eve in Germany and asked me to help him troubleshoot a defective radar when everyone else was spending time with their families…he always thought I was a radar whiz…I never turned him down.  There we were on Christmas Eve, working on this radar in the winter cold, trying to make it better.

The first time I visited East Germany was also with Jim…19 days after the wall came down….Dec. 1989.  Jim had been stationed in Berlin and served as the best tour guide you could ever have…we had a blast. 

Years passed…we were silent friends…normal for Air Force buddies…didn’t need to talk, but when we did, we would pick up right where we left off.

At one time he was stationed at Nellis AFB, Las Vegas, NV around 1998. I was in the Mojave Dessert at a Communications Squadron at Edwards Air Force Base, California.  My Squadron was prepping for an Operational Readiness Inspection and I knew Jim had been augmenting the Inspector General’s team assessing different Air Force unit’s ability to perform their mission.  I convinced my Flight Commander to pay for Jim to come over and give us a ‘once over’ and let us know where we could improve.  His report was so comprehensive, we had no problem with the real inspection…we excelled!  Call it payback for the time I helped him troubleshoot that radar in West Germany on a Christmas Eve Day.  That’s what we did.

When he was about to get married, I was attending a specialized radar school in Biloxi, Mississippi.  He was to get married in North Carolina.  I took a ride to my friend George’s (fellow Puerto Rican and radar troop from Bremerhaven…also our protégé) house in Crestview, FL and then we drove to North Carolina for Jim’s wedding.  It was the natural thing to do…anything for Jim. We played a round of golf in the morning prior to his wedding. I was so honored to be there with Jim and Karen on this special occasion.

So yes…we were there for the official beginning of Jim’s and Karen’s lives.  I visited Jim afterwards in Vegas…even after they moved to Virginia and  I was a defense contractor.  Shortly afterwards, he was diagnosed with early onset.  Ever since, my friend George and I have been struggling with his diagnosis…nothing even remotely close to what Karen has had to endure for the last 5-6 years.

I miss my friend…but not as nearly much as Karen has missed her husband…we love you Jim…

George and Jorge with Jim and I at our wedding. Jim was so glad they were there. May 1997.

George and Jorge with Jim and I at our wedding. Jim was so glad they were there. May 1997.

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

Expectations

Brad relaxing with our buddy team from South Korea at the Odyssey of the Mind Wold Finals. Thank you Michelle Carpenter for this great photo.

Brad relaxing with our buddy team from South Korea at the Odyssey of the Mind Wold Finals.
Thank you Michelle Carpenter for this great photo.

Expectations. Expectations are the root of all unhappiness. If you expect something and you don’t get it, you are disappointed. You are sad. You are let down. You are angry. You are bitter. You are many things and none of them good.

If you call a friend and leave a message; you expect a call back. If you tell someone you love them; you expect them to reciprocate. If you marry someone; you expect to grow old with them.

What if you expect more of yourself? What if you expect to be a better person, have more patience, be more understanding, be a better parent, friend, neighbor, employee, human? And then you are constantly failing to live up to your own expectations. How do you feel?

When Brad went to Iowa for the World Finals for Odyssey of the Mind last week, I think he had an expectation to win. As a competitor, that is how you think. They didn’t win first place, but honestly, I couldn’t be prouder. It was a great experience and I enjoyed the time we got to spend together. He is an awesome young man and he showed me a side of him I don’t get to see in the rush of home life. The week we spent together, walking all over the Iowa State campus is a time I will treasure for the rest of my life. I think in his own 10 year old way it was a very special time for him too.

Brad and I getting ready to fly to Iowa.  Thank you Victoria Daley for the photo.

Brad and I getting ready to fly to Iowa.
Thank you Victoria Daley for the photo.

Before we left for Iowa, I spoke with Jim about not attending Frances’ softball tournament that would be taking place while we were away. The tournament was out of town so she and our nephew would be going and Jim would stay home and take care of the dog and house and stick to his normal daily routine. He was fine with it. He said he would prefer to stay home. It was all good. But a few days later, while I was sitting in a dorm room half a country away, I was informed when it was time to pack up and leave, Jim started getting ready too. He wanted to go. It was uncomfortable for everyone involved. I felt guilty. What should I have done different? How could I expect Jim to remember he wasn’t going? Because he said he didn’t want to? I was heartbroken thinking of him feeling “stuck” or “left behind”. The last time I left him home for a night he thanked me for trusting him home alone. Maybe I was expecting the same reaction. I must try to be one step ahead, but with this cunning disease, it seems an impossible task. He didn’t remember our conversation. He didn’t remember he wanted to stay home just a few days earlier.

Remember my Morning Glory story? Guess what? Jim decided while I was at work this week to trim our hedge. Guess what? I don’t have a Morning Glory vine to bloom this year. On a positive note, there was no door slamming, no yelling and no tantrums on my end. I didn’t stop myself from asking him why he trimmed the hedge where the vine was growing when there is a whole backyard full of hedge that could be trimmed instead. (He literally only did the place where the vine grows) It is a baby step for me. I know he felt bad once I mentioned it, so I suppose my next step is to stay silent. I am not sure that will ever be possible for me. It is not in my DNA. I must come up with another way for me to deal with his great efforts that fall short in my expectations.

Expectations. I expected him to know not to cut the vine. I expected him to remember our conversation. I expect him to know to close up the bag of crackers before putting them in the cabinet. I expect him to be able to see there is standing water in the flower pot and to realize it doesn’t need more water.

These past few weeks I had jury duty. I spoke to a friend about being there all day with no phone. I asked if she would be willing to answer the usual questions Jim has for me throughout the day. She said she would be more than happy to. But she also said, “ I know you feel an obligation to do jury duty, but you have circumstances that make it ok to get out of it.”

And there you have it. As her words reverberated through my mind, I started to understand that I have been grasping at ways to keep my life ordinary.I have been struggling to keep our family “normal”. I don’t want to be a family that has extraordinary circumstances. The ironic part of my epiphany is I have never wanted to be ordinary and thrived on being a little different and thinking outside of the box. But I am not in control of our singular life, whereas before I could at least feel like I was.

Our lives are changing but I have been unable to accept these changes. I have expectations that I haven’t been able to release. Expectations of my life still being my life. My marriage still being my marriage. My husband still being my husband. Our family still being ordinary. But nothing in my life is as it once was. And will never be again.

I am trying to free myself from expectations. Those chains of desires, beliefs and whimsical daydreams keep me in a constant state of imprisonment. Imprisoned in my own mind. It may be Jim that has a disease that affects his brain, but it also has a lasting and maddening effect on mine as well.

When I release these expectations, what will I have? Who will I be? Will that mean I have accepted our fate….Jim’s fate? Does that mean I will have given up?

Should I not expect him to be able to do simple tasks around the house? And if I don’t, what will he do all day? Should I stop expecting to be able to have a home that doesn’t have rotting wood, dead flowers, dirty floors or things scattered in no particular place?

Should I not expect to be able to relax? To see friends? To go to a show or on vacation or want more out of life? What about Jim’s life? Everything is mingled and complicated and when I think too much I become so emotional and overwhelmed my mind practically shuts down and I am worthless. Then I am disappointed because I expect myself to be better and to do better. I have to be a good Mom. A good worker. A good wife. A good friend. A good housekeeper. A good cook. A good organizer. A good planner. A good person. And I am not. I am impatient and I am not always kind and I get frustrated and I sometimes want more. Sometimes I say the wrong thing or I forget something I should have remembered.

My life is such a complicated conundrum that continues day after day and year after year. I am desperately searching for a game plan to know the right way to navigate this nightmare, but there isn’t one.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (8)

Ups and Downs

Supporting Brad at the state competition. April 2014.

Supporting Brad at the state competition. April 2014.

It is time! Brad’s Odyssey of the Mind team is headed to Ames, Iowa to compete in the World competition. I am so, so lucky I was able to take off  work and go with him.. I always seem to spend more time with Frances for some reason or another and it makes me so happy to get to share this grand experience with him.

Of course a huge dilemma was leaving Frances and Jim for 6 days with no transportation. As luck would have it, my awesome nephew just finished his first year of college and was not only available, but willing to come stay with them and help. Again, our lives are blessed by those we have in it.

Another huge stressor is getting everything ready. I am in the process of fixing some sauce to have ready in the refrigerator. I will put dinner in the crock pot before we head to the airport. I have cleaned, shopped, asked friends to be on call and organized the schedule for the rest of the week. Naturally Frances has a softball tournament out of town while we are away and thankfully (again) some parents have stepped up to offer help however need be.

Tonight while I was trying to pack, I noticed some clothes that were in the dirty laundry earlier in the day now hung up in our room. I did 3 loads today so I was familiar with what still needed to be washed. There was a not washed linen skirt, all jacked up on a hangar dangling in the closet door space. So, I start investigating, which I have come to realize, albeit too late most of the time, that I should just stop doing. Yes, dirty clothes were put away with the clean clothes and wet towels were thrown on top of some of the clothes left in a basket and then another basket was put on top of a basket of clothes as well. Everything dealing with our laundry was completely awry.

Then to top off the day, I was putting groceries away and one of the shelves on the door of our fridge literally broke when I put something in it. I quickly emptied the contents while putting the rest of the food away and fixed dinner. It wasn’t until after dinner I opened the door and saw the empty shelf back in the fridge, waiting for someone else to put a bottle in it to only fall on the floor. And yes, Jim was standing right there when it broke in the first place. He had no recollection.

It has been that kind of day. My bicycle tires were flat and I couldn’t get the air pump to work to put air in them. We had windows open with the air conditioning on. A block of cheese was put away with the wrapper ripped apart so that the cheese was now a much darker orange and hard as nails. The dog was left alone and grabbed a brand new bag of bagels off the counter and ripped them open. It was just one thing after another. The relatively new can opener no longer works. The flowers that were supposed to be watered were drooping bone dry. I was ready to scream!

But in the quiet of the night, I sit alone, and feel calm. I feel like it is all going to be ok. I feel cared for and supported. I realize all of the little things that go wrong make room for the big things to go right. All it took was a quick phone call from a friend wanting to touch base before we left tomorrow.

I am telling you, a quick note, phone call, lunch, drive by “hello”, whatever, makes a huge difference to someone. You may think they are living a perfect life. You may know the struggles they endure. Either way, we ALL need to know others care. We all need to feel like our worst days are better than someone else’s.

Some of you might be wondering why my fabulous parents, who always come to help, aren’t coming to help this time. Well, good question. They are driving to Iowa and coming to cheer Brad and his team on. How lucky am I? I have a nephew willing to help. Parents willing to help. Friends helping. What do I have to complain about? Nothing. Now if I can just get a new fridge shelf, working can opener, fix my tires and figure out a new system for the laundry, I would be the happiest girl in the world.

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

Torture

Huntington Beach, CA 1998

Huntington Beach, CA 1998

Words are becoming a little more difficult at times for Jim.

Memories from when we lived in Missouri 14 years ago are muddy.

Dirty dishes are put away instead of cleaned.

The coffee pot is put in the cabinet with coffee still in the pot, growing mold.

Pajama bottoms are worn inside out.

Feet shuffle.

Back hunches.

Handwriting becoming intelligible.

Words are either misspelled or taper off into lines that don’t form letters.

Body parts sometimes shake for no apparent reason.

This is where we are. Where Jim is.

Recently, I encountered someone who is about 30 and knows Jim has Younger Onset Alzheimer’s Disease. As our conversation progressed, she got a little confused.

“So, will Alzheimer’s kill him? Can it kill someone?”

“Yes. “

“But how? I just thought they forgot stuff.”

“They do, but it progresses so that they forget how to chew, swallow, talk, walk and anything else your brain would tell your body to do.”

“So, what do they die from?”

“Alzheimer’s Disease. But they will probably starve to death or have strokes first.”

“Wow. I had no idea. I thought they just couldn’t remember names or got lost all the time.”

Education. It is imperative that we educate our society about Alzheimer’s Disease and other forms of dementia. There is such a misperception and it harms the cause. This disease KILLS people. It KILLS families and fortunes and friendships and careers and futures. It affects every single aspect of a victim’s world. Finances. Emotions.Bonds. Jobs. Homes. Relationships. Pride. Self Respect. Mental sustainability. Any aspect of living and breathing, this disease WILL have a direct impact on it.

As a friend said to me today, “ If there was something the devil himself could devise and a disease he would come up with, this would be it.” She is right. It is long. It is heartbreaking. It is torturous. Literally. Torture.

Jim and I have been having some heartbreaking conversations lately. We have met again with our attorney. We have discussed funeral stuff. We have discussed care arrangements. We have gone over options for our family as he progresses. It is emotional and gut wrenching. We had to order him a new passport and while filling out the paperwork he couldn’t recall his mother’s birthdate. He got confused and thought he might be cured. He realized that wasn’t the case and cried. He doesn’t want to leave us. He doesn’t want to leave his children. They mean the world to him. But he doesn’t necessarily show that these days. He seems to be able to only focus on one simple task and that will cause him to ignore anything else in the picture. Even if it is the children coming home from school or asking him a question or telling him they love him.

I really, really hate watching him slip away from us. If there were a way to feel like you are in purgatory, wouldn’t it be to take your loved one away, one cell 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 (11)