Rehab Follow UP

Jim working on a puzzle and a word search at rehab. Thank you for the picture Rona Altschuler.

Jim working on a puzzle and a word search at rehab. Thank you for the picture Rona Altschuler.

Thank you for all of your support, love and concern. What a long, whacky, scary, emotional week this has been. I am exhausted. Literally. I apologize, but I must keep this one short, but know I have a LOT to say!

First of all, the doctor from the hospital called Monday to explain and apologize for his error. It seems after reading so many comments and messages this is an all too common problem and definitely one that needs to be addressed.

Second of all, Jim has been doing splendidly in rehab. He is just about back to his old self. I think he will make it pretty close to his baseline. His short term memory is still much worse and he is still confused a little, but overall, the difference is unbelievable. I honestly didn’t think last week at this time he would ever be coming home again. So glad I was wrong! He is slated to be released THIS Friday! He has been working hard and has improved so much, they are kicking him out. He had an infection in his lungs from silent aspiration. Scary stuff. As soon as the antibiotics really kicked in, he was a new man.

Many have asked why Jim isn’t on Aricept or Namenda. He was. I wrote about why he is no longer on these medications here: We Are a Team!

As happy as I am that Jim is recovering and doing so well and finding his sense of humor so easily again, I am scared. Seeing him the way I did, going through the emotional, gut wrenching journey with him in the ER and the hospital, seeing him so lost and confused….it is too much to play over and over in my mind, but for some reason I do. It is awful. I try not to, but I can’t help it. Witnessing the kids see their father in this state was utterly heartbreaking and  awful. I worry about what will happen if this type of thing happens again. What if I don’t come home in time to find him? He would have died. DIED. Like, forever gone. Do I now need to hire someone to stay with him? How will I pay for that? I am stressed to the max trying to figure everything out. Stressed actually isn’t the right word. Completely freaked out is more accurate. He is my responsibility just as much as the kids are. But I don’t know yet what the right answer is for our family. He is not ready for a home yet. There is a day program in our local area that would be great because they do activities with patients all day, but you must be at least 55 years old. Jim is only 52, so alas, he is too young. There is another day care place, but they are private pay and medicaid. If I was going to be able to pay, I would just hire someone to come to our home. The ideal situation would be to send him to some type of sports camp all day, every day. He would be so happy and have such a good quality of life. Volleyball, softball, tennis, bowling, basketball, racquetball, soccer…it wouldn’t matter. He would do so well. That would be my ideal situation for him. Not sitting around trying to figure out what to do. Not pacing the house searching for something he will never find.

Yes, I am so very happy, But at the same time, I am very worried.

Thank you again for all of the messages and the empathy. I am so grateful!

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

Hospital Stay, Day 3

Screen Shot 2014-09-12 at 10.50.58 PM

Where do I start? Well, I will try not to ramble on with insignificant details. I will give you the great news first….Jim was released from the hospital today and went straight to a rehabilitation center. Because he stayed the required 3 days in the hospital first, his medicare will cover the costs with rehab. This is important information for you to know if you will possibly be dealing with a similar situation.

Before Jim left the hospital, Dr. ‘I think it couldn’t be Alzheimer’s Disease because he is so young’ came back by to do a final evaluation before discharging him. I thought we were moving past our initial meeting where I thought….well, see what his name is and you will understand what I thought of him. Breathe Karen, breathe.  Like I said, another conversion for another time. Back to today….the doc and I have a lengthy conversation about what Jim will be doing at rehab and what medications he will continue and some other not important for this story stuff. The main thing to understand and know is that we discussed the 2 medications he was on and would continue on…Mucinex and his antibiotic. He also recommended a breathing treatment, but not as important.

He gets to the new digs. I visit with him, get him acclimated and go home to pick up his clothes and some photos to put up. I bring Brad back with me to visit. I give him a shower because otherwise they won’t be giving him one until Monday. (ewwww.) We go back home to eat dinner. I go back up to make sure he is ok and get him to bed. He tells me he is tired and wants to go to sleep. No problem. I tuck him in and turn out the light and remind him I will be there in the morning. One last “I love you” and I am out the door. As I am leaving, I run into the assistant nurse. She is handing out medications. I tell her he is in bed and the lights are off. She tells me she will be going in shortly to give him his meds. Something unexplainable told me to ask what he was taking. I already knew the answer but for some reason I was prolonging my exit.

“Aricept. Lexapro. Namenda….”

“No. That isn’t right. He isn’t on them and hasn’t been for a long time.”

“That is what it says. If you have a question, you can go speak to the nurse.”

So I march, furiously and with purpose, to the front desk and find the nurse. I tell her I would like to look at the directions from the doctor at the hospital. There must be some mistake because my husband wasn’t on any of those drugs. But there it is, in black and white. I was pissed is an understatement. Not only did it have in his file from the hospital to take these drugs, it DID NOT list the Mucinex or breathing treatment. The thing that really got my blood boiling though was the very last paragraph. This paragraph was right below the line that said it had taken him over 30 minutes to do this discharge (we met for less than 10 minutes, so he must have spent a long time figuring something else out). This paragraph at the very bottom of the last page said that he had gone over this treatment plan in great detail with the spouse and said spouse was in agreement with the course of action written out. What? Are you kidding me? It took every ounce I had to keep myself composed.

Needless to say I made it very clear to the nurse that he was not, under any circumstances, to get the aricept, lexapro or namenda. If the doctor there at the facility had a question, they could call me. (They won’t see him until Monday). I then called back to the hospital to let the poor person who was stuck in the position to listen to complaints after hours hear how upset I was. This isn’t over. I am to get a call back on Monday. His meds are supposed to now be straightened out.

I know I am tired. I know I need to take care of myself. But there is no way I can let this slide. I respect doctor’s immensely. I admire the ability to get through medical school, to take an instrument and cut someone open, to save lives and change families and deal with death each and every day. I mean no disrespect to anyone in the medical field. But I cannot let this go. Putting Jim back on those drugs would have been setting him on a course of no return in my opinion, which is based on his already having been on them. This is very, very bad. Like I needed another reason to be upset and stressed.

I am so glad Jim was well enough to leave the hospital and has a wonderful spirit with him that makes you want to hug him and he continues to show us his wittiness. He is still having cognitive problems and his swallowing is also a huge concern, but he seems happy and he seemed to understand why he couldn’t come home yet. He cried many times today, just so overwhelmed to be with his family. And I am happy to still have him with us.

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

Hospital Stay, Day 2

Screen Shot 2014-09-12 at 2.24.22 AM

It is late. 1:42 a.m. to be exact. I should be sound asleep. I can’t until I share our update. Please forgive the lack of editing and please keep in mind the time and the fact I am tired. Just get the gist of the story:

The day started off with one thing after another. Brad’s fish tank filter stopped pumping. Frances missed the bus. I needed to shovel off the massive amount of dirt that had been washed across our sidewalk with the recent heavy rains. I was desperate to get to the hospital to see how Jim was. I had called the nurse and she had said he was the same, but I wanted to see for myself.

I eventually got there and saw that Jim was now receiving oxygen. I couldn’t stop myself, I just started crying. I hugged him and with a slightly confused look in his half closed eyes, Jim wrapped his arms around me and told me he loved me. I was just so sad. I realized then it was going to be a long day. The waiting began. The physical therapist came in. After explaining to her that the Jim laying in that bed was not MY Jim, this was NOT his normal baseline, she concurred he needed to get some rehab before coming home with me. (The day before she had recommended he come home with his wife and some home help) That was a relief as I knew I would not be able to take care of him in this state. He was sleeping 97% of the time and not eating and hardly able to speak. Plus he was really confused. Then the speech therapist came in to see how he was swallowing. It seems he was unable to swallow quickly enough and liquid or food could go down the wrong pipe into his lungs. She recommended a new diet, to include thicker liquids. But Jim was still not eating. Two bites for breakfast and 5 for lunch. All he wanted to do was sleep.

Finally, mid-afternoon the doctor graced us with his presence. Ok, that wasn’t nice. His visit was much better than the first one. It seems he had spoken to Jim’s regular neurologist and realized this was not typical behavior for him. He concurred that Jim would need rehab and recommended he go straight from the hospital to such a facility. I was given a list of places to choose from and the hospital would call to see if any had openings. He also let me know that he was very concerned about his ability to chew and swallow properly and that if we didn’t keep on top of this, it could potentially be deadly (food and bacteria in lungs is obviously not a good thing).

So I felt better, but I was still just so sad every time I would look at Jim. When I would get him awake, I would ask him who he was, who I was, where he was, etc. For the most part, he always knew he was in a hospital. He knew his name. He sometimes knew I was his wife and sometimes knew my name, not always at the same time. He had started off his stay in the hospital telling me we had four children but now he knew we had two. But he was having much difficulty recalling their names. Yet, when they brought lunch and the roll was on a doily, he lifted it with his fingers and said, “huh, doily.”  By the time I was leaving to go to Frances’ field hockey game, he was telling me I was his sister, not knowing he was in the hospital and finally awake enough to watch some tv.

I want to remind you that Tuesday, I left him for 3 hours and his Alzheimer’s Disease accelerated by five years.

I returned from her game and Brad’s baseball practice with my Mom in tow. She hadn’t seen him yet. When we turned the corner to pass the nurses station, THERE WAS JIM!! He was sitting in a chair. He was happy. He was alert. He was awake. He was joking around. He was able to walk back to his room. He was smiling. It was AMAZING. I was stunned. I had been thinking that he might not ever be able to come home again. I had been hearing from so many people that once the infection (they think in his lungs) cleared up, he would get back to or close to his “normal”. But sitting there all day long watching him sleep with his mouth open, it was nearly impossible to imagine that could be the case. Now, I am thinking that might just happen. I was so excited, I called my Dad and had him bring the kids (who had been very dismayed by Jim’s demeanor the night before). They too were very surprised and happy to see such a change in their Dad.

He still couldn’t recall the kids names very well. He forgot my parents came to visit him. He was still confused where he was and thought he was at the stadium watching the football game instead of seeing it on tv. The sprinkler head on the ceiling was fascinating him and he was wondering if they turn them on all summer. He was eating. He was laughing and joking. He was so different than the man I had left just a few hours before. It was like when he took such a turn for the worse, but opposite. Crazy stuff.

So, now I can head off to sleep, knowing I have filled you in. I am anxious to see how he is when I arrive tomorrow. I am hoping he will not only be as he was tonight, but even better.

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

Sharing an update that isn’t good

Screen Shot 2014-09-10 at 11.22.40 PM

Jim was admitted to the hospital yesterday. I came home from work and he was out of it. In a way that screamed, “Help me. Help me. I don’t know who you are or what is going on and I can’t really stand up by myself even though I am.”

I startled myself with my shock and surprise at his demeanor. I was not able to focus and think clearly. I was scared. Not typical behavior for me. I very seldom lose my ability to think clearly in a situation, especially one where calm heads need to prevail. It was just so out of the blue and so unexpected. I had just been sitting with Jim only a few hours before, during my lunch break, on our front porch having a heart to heart (as best we can these days). This wasn’t happening the way I have pictured it for so long.

I did realize that the kids would be coming home from school. I realized Brad had piano. I remembered I was supposed to be attending a work event. I knew the laundry in the washing machine needed to go in the dryer. I just wasn’t able to be functionally decisive on a plan of action. But a wonderful friend came over and took charge. She took command and then I had many friends who moved into action. Taking the kids. Helping me think. Bringing me dinner to the hospital as I waited in the ER. Texting me their support and offers to help. Not just my girlfriends, but guy friends and husbands of friends, who technically are friends of Jim’s as well. As sad and worried as I was, I knew I wasn’t alone. With every text, phone call and offer to help, I could feel another steel link to the net being built under me growing. What a comforting feeling in the midst of such confusion and worry. My blessings are immeasurable in so many ways while at the same time I feel so unblessed. What I hope those that are building our safety bubble underneath us understand is how important to us they are and how eternally grateful I am. I cannot repay the underlying benefit of the help and refuge I have received. And I know there is so much more to come.

Yet, later that evening, walking in the dark parking lot, through the misty rain to my cold, empty van, I was alone. As alone and forlorn as I have ever felt in my life. I was alone and realized that was my life now. Even if Jim recovers to his baseline behavior, I am in this world without a partner. Even though I feel lonely on a daily basis, with Jim literally sitting next to me, it is a different kind of alone when your spouse is no longer with you physically either. Who will I call if I break down on the side of the road? Who will I lie next to in bed at night and wake up with each morning? Who will hold my hand and rub my back and tell me how much I mean to them? Who will love me with all of my faults? Who will smile at me and make all my troubles disappear? Who will care as much about my children as I do? Who will I be able to sit comfortably with in silence? It is supposed to be Jim. It has always been Jim. And now it’s not.

I HATE ALZHEIMER’S DISEASE!

This disease has been real each time he has forgotten something or done something uncharacteristic for him. But yesterday, seeing him shaking and unfocused and unable to verbalize a sentence was a new level of heartbreak and despair. As he lay in the hospital bed, looking pail, frail and old, I was dismayed when he couldn’t recall my name. Or our children’s names. Or remember he was in the Air Force. I was even more shocked when he thought his brother and his mother were still alive. Things I have been expecting and knowing were coming eventually, had finally arrived. And even though I have known this day was coming, I was still not prepared.

The “doctor” (remind me to tell you why I put quotation marks around this; I don’t want to lose focus here and his comments will piss too many of you off) thinks it is an infection and once the infection has cleared up, he is expected to make a “full recovery”. Whatever that means. What is a full recovery for Jim? His “normal” changes weekly, so I am not sure.

I am not ready. I am not ready to let him go. As much as I don’t want him to suffer and as much as I don’t want to deal with all that is coming with Alzheimer’s Disease, I am not ready to be as alone as I felt in my walk to the van.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (34)

Leading the way….but is it the right way?

 

Jim enjoying Alaska. July 2014.

Jim enjoying Alaska. July 2014.

I have been working on some posts. But they are really visceral and I am not ready yet to share them.

Thank you for your concern. Thank you for checking on me.

I am ok. Yep, just ok. I have been and could be better. I could also be worse.

Jim is Jim. Just happy in his everyday world of walking the dog and doing a few things around the house and living in his growing private world.

I believe that as he declines, I decline. I just haven’t been able to accept and ignore his baby steps towards his eventual descent into an abyss of fog and indifference.

How can this man who still plays volleyball and tennis and hits a golf ball 200 yards be unable to remember that he played, who he played and how well he did? Can someone please explain to me how he can visit with two of his dearest and oldest friends from his days in the Air Force, fully aware and participatory and yet the next morning not be able to recall one of their names and slip back into the absentee blank look that he seems to have now more days than not?

Forget my loneliness. I am getting more comfortable with being the decision maker and spending nights and special occasions “alone”. Yet I just can not seem to grasp losing Jim and our changing reality.

The kids. The kids assuage my fears and yet they also are the determining factor of how much anger I have towards this disease; how much I hate bearing witness as their father ignores them; how much I am determined to find a cure before they fall victim; how easily I seem to crack and falter at any given time as I become burdened with the parenting responsibilities normally reserved for two.

So, as we transition into another school year (which I tend to fall into a bit of depression anyway) we also are transitioning into a life without Jim even though Jim is physically with us.

It became apparent over the summer that I was just as guilty as the kids. Since Jim had stopped participating in discussions, we had stopped including him. The kids had stopped telling him “good night” or “I love you” or discussing their day with him. I am ashamed to admit the truth; they were following my lead. I was semi-conscious of this but it all came to a head and I was forced to see my example was not a good one and changes needed to be made. Hard conversations needed to be done.

As I explained to them,” I got a second chance to have a good relationship with my parents after being a terrible daughter and typical teenager. You, unfortunately, will not get that chance. You will only have one chance with your Dad and I don’t want you to look back and regret your relationship or how you treated him. You must participate in his life now because soon you won’t be able to. Whether he seems to care or not, you must remind yourself that he does.”

Now I must follow my own advice.

Jim and Brad sharing a book, 2006. This was before Alzheimer's Disease took hold of all of our memories and our day to day lives.

Jim and Brad sharing a book, 2006. This was before Alzheimer’s Disease took hold of all of our memories and our day to day lives.

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

A Day in the Life

 

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 (17)

Epiphany Time (Again)

team-building-quotes-1

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 (20)

We are a TEAM!

 

Seth-quote-4

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)