Archive for September, 2014

When will we be NORMAL?

Brad helping with dinner tonight since I didn't get home from work until very late.

Brad helping with dinner tonight since I didn’t get home from work until very late.

Frances has mentioned several times (remember, she is 13) that she just wants to be “normal”. Yeah. So do I.

I don’t want to be consumed by Alzheimer’s Disease 24/7. I really don’t want to be constantly asking for and accepting help from so many. I don’t want to watch my husband, my soul mate, the one person who actually wants to put up with my shit turn into a shell of the man he once was. Sometimes I watch him and I feel so sorry for him. He has the outward demeanor at times of an 85 year old but without all the fun of having lived those productive and memorable years.

Watching him in the hospital last week was horrible. Just horrible. I know there are millions of people who have witnessed such pain and have felt such sorrow, but when you are there, in the moment, living and breathing the confusion and the depravity of this illness, it becomes REAL. Real beyond “knowing” what is coming. It was here. I was smack dab in the middle of a storm and I was not prepared or ready. I am not sure I will ever be ready.

Jim has bounced back to the point of being about at his baseline. Modern medicine really is amazing. To see him two weeks ago not even able to stay awake for longer than 5 minutes or to know where he was or who we were and now being able to stay home alone again is incredible. The biggest issue so far has been the disappearing dog food bowl that was found 24 hours later in the cat food bucket. But this snippet of what is to come made me realize that there really is no preparing for this.

It has been a rough ride all the way around. Rough on the kids. Rough on our friends. Rough on our family. Rough on me. Rough on Jim (I am going out on a limb here because he really doesn’t seem affected at this point.) I am aware enough to know that this same type of thing could happen over and over. I worry how it will affect the kids. How will it affect the desire of friends to drop everything to rescue us? How will it affect me? I can tell sometimes that I am immune to the situation and show little emotion at times that I should.

During all of this, I have realized how completely broken many aspects of our healthcare system are. You read articles about this, but when you are told that because your mentally impaired husband doesn’t have a physical ailment, he cannot qualify for home health aid or Medicare won’t continue to cover rehab and you can’t find any programs for someone his age (52) because he is too young. Well, I wish someone would tell his Younger Onset Alzheimer’s Disease that he is too young to have it. Wouldn’t that be nice?

So let me paint a picture for you: my husband has a mental disease that is not going to get better. We have two children, ages 10 and 13. I work full time. We are middle class. (which means we do not qualify for programs that are based on income) He is retired military and for those of you in the know…I have started the process of trying to qualify for Aid and Attendance (OMG, the paperwork, the waiting, the formula to try to figure out if we will qualify) It seems that each day I find out something else to worry about and then I must make a conscious decision on whether or not it is something I have control over and therefore something I can try to mentally and emotionally ignore. Jim is for all intents and purposes no longer a participating “Dad”. Before you get all upset about that statement, think about what a Dad does in the sense of the word and think about if someone in the early stages of dementia can do those things. Oh, and walk a mile in my shoes. Then you can say something. So, I am responsible for 3 other people besides myself. Plus the bills. Plus trying to keep up with laundry, housework, yardwork and meals. Plus my job. Plus the kids schedules and schoolwork (yes, I forgot to sign an agenda last night). Plus the myriad of things that any “normal” family faces each day. I have people tell me all the time they don’t know how I do it. I have come to realize that whatever we are each faced with at any given time is what we can do. For some, it is dealing with an ex that is dragging them through the courts again. For a few, it is figuring out which contractor to use for their new addition. For others, it is dealing with a teacher that seems to be treating their child unfairly. Whatever is causing stress, that is your thing at that point in your life. This doesn’t mean it will always be the only problem you have. We all have our own difficulties to endure. Thankfully, they come in a variety of sizes and at different times, which allows us to shelter our friends when their burdens are much worse than ours. Right now, my burden is making an impact unlike many deal with. But I can weather through with the help I receive. Someday, I hope, I will be on the other side and I will be offering shelter to a friend who will be needing refuge. In the meantime, I am struggling to find my way through all that seems to be coming at me at once. My priorities are changing. My focus has already changed. My determination and grit are still just as strong as before. Only now I don’t have my partner to help me. I do have unbelievable parents. I am surrounded by wonderful friends.  I have two children who amaze me. They are not perfect by any stretch of the imagination, but my goodness, they sometimes step up in ways I never would have when I was their age. And it makes me humble and it makes me proud.

Yes, I want to be “normal” too. Whatever that is. A simple life with my biggest worry being what I am fixing for dinner or what we are doing that weekend.

Frances walked in the rain tonight while I was at work to get me a delicious cupcake. She bought it with her own money and decorated the box for me.

Frances walked in the rain tonight while I was at work to get me a delicious cupcake. She bought it with her own money and decorated the box for me.

 

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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)

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 (15)

Hospital Stay, Day 3

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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

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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

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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)