Blessed to find lots of Rainbows

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Why I am so blessed when I am going through the roughest time in my life:

1)   I have two absolutely amazing kids. I try really hard not to brag about their awesomeness, but when I need to find something positive going for me, most of the time they are all I have. They love me unconditionally when I am not the best Mom and they help a tremendous amount around the house. They do well in school, participating in lots of different activities and are not slaves to the TV or Xbox. They love nature and care about our world and animals and they both love learning. They still snuggle with me in bed and give me hugs and tell me how much they love me. Yes, I am blessed in ways that money could never, ever buy.

2)   I have friends that have not forsaken me. I cry. I say inappropriate things. I get too loud. I drink too much. I forget things I am supposed to remember. I am now a moody, crazy woman. Yet, they still come around to check on me and look out for the kids and continue to ask how they can help. The world can be a big, scary, lonely place if not for the comfort of a friend or two. Even better: the friend who can be crass and make me laugh by saying the most politically incorrect statement that is funny because it is true. Not only do my friends take care of me, they bring Frances and Brad into their own families and show them the meaning of family and friendship and allow them to have second and third homes. Sometimes they magically appear to help with little things that need to be done around the house. The front yard weeded. The old paint cans disposed of. Lights hung in the bathroom. Sometimes they look out for Jim; offering to take him for walks and giving him rides to play tennis. Each little gesture adds up to enormous support that keeps us afloat.

3)   My children attend great schools. They have principals who care. Teachers who care. A place they can disappear from their “real” world for a while. Brad’s school is doing a fundraiser this Saturday morning. They have been planning this fun run for months. One night, about 3 months ago, around 9 o’clock there was a knock at our door. There on our porch was one of our neighbors, the PTA treasurer. He had come straight over after a PTA meeting to apologize. It seems this huge endeavor was inadvertently scheduled for the same morning as our upcoming Walk to End Alzheimer’s. I have been told by numerous sources, all of whom were present in the meeting, that when it came to light that the two events were coinciding and it was too late to change the race, everyone felt horrible. It was decided that I needed to be told right away and we needed to know that they support our cause 100%. To counteract the fact the school will not be able to participate in the walk like they did last year, they have discussed Alzheimer’s Disease on the morning announcements, they have made donations to our team, they made the t-shirts for the race….PURPLE (the school color is blue), and they have reached out to me over and over again to support our family and remind us how much Brad means to them. In a time that I am feeling the pressure and stress of our situation, there is hardly a way to express the comfort that comes with knowing others are looking out for our children.

4)   My children are active in sports and music and have teammates, coaches and instructors who help us whenever they can. I have had to rely on other parents to give both kids rides to practices or games. I have had to sit in the bleachers while Jim makes some inappropriate comments and search their faces to find they have (thankfully) no reaction. Sometimes, they see I need to be left alone and they let me sit in my chair, watching the game and allowing me to get lost in my own mind for a while. Sometimes I sit quietly, not even able to cheer, but I hear them, loud and clear, cheering for me. I have coaches who do not hold the fact I sometimes cannot get them to practice against either player (some coaches have been known to withhold playing time). Brad’s team is again participating in the walk for the second  year. They are very busy families, and yet, they carve out a precious Saturday morning to show us how much they love us and care about us. How do you thank someone for that?  You can donate to their team by clicking here.  Both music teachers patiently forgive me each time I have to call and re-schedule a lesson. They offer tickets to music shows and bring smiles of joy to the kids’ faces with jokes and the shared love of a good piece of music. 

5)   I have parents who drive 4 hours each way to come help me with the kids and Jim. They call me almost every day to check on me. They ask about the activities we are doing, they take the kids for pizza and ice cream and if needed, remind them of their manners and chores. I never have to worry about letting them down…they have loved me when I wasn’t very loveable and they have supported me when I wasn’t very smart. They help me “parent” when I need the break from being a parent. They listen without judgment. They hug. They cry. They show up and keep showing up. They are above all else, my rock.

6)   I have a home to protect us from the storms. This home is located in a village that surrounds us with support and help.

7)   I have a job.

8)   I have my health. As I watch Jim decline, I become more grateful for my own healthy mind (although there are times that may be debatable) and my own healthy body. I worry my health will suffer with the stress I feel on a daily basis, but I am hopeful that I will be strong enough to make it through.

9)   I have new friends. I have made dozens of new friends through our advocacy for Alzheimer’s Disease and through my blog. I have heard so many stories and had so many words of support sent our way I have learned without a doubt we are not alone in this fight.

10) I am alive. I am blessed to just be awake on this side of the dirt beneath my feet. I sometimes forget to cherish the fact I am sharing in the lives of my children, my brother, my parents, my friends and Jim. There was a time in my life I was worried about living long enough for the kids to know me. Now I am grateful they do and I want more. I want them to know me with their children.

Sometimes it is extremely difficult to remember how blessed I am. How blessed our family is. Sometimes, I cannot see the sunshine in our lives but I am only focused on the black cloud I seem to be immersed in. Sometimes, after the rain shower, a rainbow emerges to light the way.

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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 (6)

Sink or Swim Time

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Yep. I am still in a bit of a funk. I am fully aware of my melancholy, yet I just can’t seem to pull myself into a brighter mood. There always seems to be something going wrong or something getting broken, misplaced or needing to be done (house painted, porch replaced, etc.). I swear, sometimes I think there really is a dark cloud that lives over me. I could really use a ray of sunshine. Not just for a moment, but for an extended period.  It is a never ending cycle and I just need a break. A break from decisions, from work, from being a “single” parent, from worrying about Jim and his future. While I say this, a tiny voice is on repeat: BREAK? WHY SHOULD YOU GET A BREAK? YOU HAVENT EVEN GOTTEN TO THE REALLY HARD PART YET!

Yep, I know what is headed our way and I sometimes wonder if that makes everything personified. Even so, I am desperate to raise the children in a positive environment. Yet, I am not sure there is a lot of positive vibes floating around when I am such a grump. I know there are some people who follow our story who have lost loved ones to something other than Alzheimer’s. I think when you lose a loved one, it is a universal understanding and bond that is formed with others that have gone through the same pain. But there is something about Alzheimer’s Disease that seems to be a little crueler. I do not, in any way, mean to disrespect those that have lost someone to cancer or any other sickness. It all hurts. It all makes you lonely and sad and the loss itself is the same. But I think the costs associated with the long term care, the frustrations of “babysitting” your spouse or your parent (or sibling) for such an extended period of time, the pure hopelessness felt every time you visit the doctor and there is no treatment plan therefore no hope, the mourning that is done day in and day out and then the overwhelming lack of time to mourn as you are embedded in the routine of worry, exasperation and financial struggles that can ruin your family forever. I realized just a few days ago that part of my problem was the fact I need time to let go of Jim and to lament the loss of our marriage, our family, our dreams, our relationship and come up with a plan to help the children do the same. But I don’t have time. I am not allowed or able to take the breather that usually comes with the loss of a spouse. Because I haven’t actually lost him. He is right here. Playing tennis. Eating dinner. Walking the dog. But he isn’t. He is so not here. And I am so not able to truly allow myself to let him go. So here I am, treading water, wondering how long I can keep it up.

I need help. Help fighting this war. I need to know that there is something better coming. My husband is dying from a disease that has no cure and no real treatments. It runs in his family. I am asking EVERYONE to help us. What can you do? You can write your Congressperson. Don’t ask them for more money for Alzheimer’s research, DEMAND it. Demand they listen.  Here is a link to a previous post about why you should help us advocate. Please ask them to support the Alzheimer’s Accountability Act. For more information click here. Then follow up with them and let them know you are paying attention!

When I follow the news and listen or read about proposed spending on things that I just don’t feel are as important as finding a cure for a disease that has been around over a hundred years and yet we are no closer to keeping someone afflicted alive longer or providing a way to cure it or prevent it all together, I just want to scream. Not only are we not providing what is needed for the patients, we are doing huge injustices each and every day to caregivers. Caregivers are getting worn out, used up and kicked to the curb over and over again. Each person who is responsible for an Alzheimer’s patient, must not only figure out finances for care and lost wages, actual care to be provided, often times losing their own jobs, and they must try to navigate through mounds of paperwork and technical terminology to make sure every “i” is doted and “t” crossed so they MIGHT get some sort of help. It is a disgrace how much burden is added to people who are struggling to come to terms with the fact that someone they love so dearly is dying.  Then, to add salt to the wound,  they are forced to prove they can’t pay for care or told they did something wrong and must re-submit the same paperwork they have already submitted 2 times or they must spend down the retirement they need to survive themselves in order to get help with care for their loved one. IT IS INSANE HOW THIS SYSTEM IS SO MESSED UP!!! None of this process makes any sense and yet, here we are, The United States, the leader of the free world…..definitely NOT a leader in the fight against Alzheimer’s Disease. Why? Can someone please explain to me why this isn’t more of an urgency and why we are having to fight so hard to be heard? Maybe then I can relax and I can have faith that things will be better for Frances and Brad.

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

An open letter to caregivers

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This is an open letter to all caregivers. I want to answer some of your messages you have sent me. I apologize for not being able to respond to each and everyone individually, but I want you to know that there is usually a common theme in all of the notes I receive. I also want you to know how much I appreciate you taking the time to share your stories and to send me tidbits of info. and advice. I hope this blog helps you on your journey.

I am not in a super good place right now. I go through spurts. Sometimes I see a positive future and feel like I am making a huge difference. Other times I only see how awful our lives are right now and how terrible they will be for the foreseeable future and beyond. I think about watching Jim decline and dealing with the financial woes, the emotional upheaval and the overwhelming sadness that envelopes us. I sometimes scream at the top of my lungs, “I can’t do this anymore.” I never say it isn’t fair, I just say I can’t do this anymore. When in reality I can, I just don’t want to.

I am often told to take care of me. Very good advice. But, I am not sure how I am supposed to do that. Am I supposed to quit my full time job that causes me stress? Then I could exercise daily and have time to fix healthy meals and time to take naps and have leisurely lunches with friends to make sure I am relaxing. Am I supposed to hire someone to come watch Jim and take over the household? I understand the sentiment behind the words. People care and sometimes the only thing they can offer is encouragement to take care of me. Easier said than done, knowing I need to follow the words of wisdom. Each of us needs to heed this advice, once we figure out how.

I have realized a few things about people. One being that some people just suck. Big time. I am not trying to be negative here and I am not trying to call any one particular person out. But I read story after story of promises not kept, hurtful words said and the complete isolation some caregivers have come to face. You know what? Even with all of the wonderful support and help I have received, I have the same things happen. I try really, really, really, really hard not to dwell on such things. Most of the time I am able to put a positive spin on different situations…..like when the person “bought” a piece of furniture from us, in the process we ruined our kitchen countertop moving it out of our house, and they never paid. When the kids asked me about it (many times) I explained to them it was a great $50 education. When Brad said we should call the cops because that is stealing, I reminded him that sometimes it is better to learn a lesson than to worry about how you learned the lesson. Did I mention how hard this is sometimes?  There have been “friends” who have completely disappeared. I just don’t write about them in my blog…but I have had it happen too. I have the friend, who I once was close to, even taking a weekend vacation together, who now sees me and doesn’t speak unless I do first. You are not alone in this. I want to remind you to not focus on those that have abandoned you in such time of need, but to appreciate even more those that have surrounded you in love. If you look hard enough at all of those encouraging you and helping you, the vanished “friends” will fade from your view and your worry all together. This takes an enormous amount of effort. Just like everything else, sometimes the vision is easy and sometimes not so much. Focus on all that is good, even when there doesn’t seem to be much.

Last week I had a really, really bad week. For lots of different reasons. Then I got a terrible scratch on my shin from the cat while I was trying to give him flea medicine, I burned my arm quite badly AND got in a teeny tiny fender bender. ALL IN THE SAME DAY. It was also the same day Frances won her student council election and the same day a mysterious box of chai tea (I don’t drink coffee) was left on my porch. So, at the end of the day, I could focus on the 3 horrible (and a little painful) reminders of how bad my life is right now, or I could celebrate how awesome it is to have a friend who would go through so much trouble and a daughter who worked past her fear of losing and became class president. Again, not easy, but one would take me down a dark path that would only prolong all of the bad things and one would help me raise my children in a happier home. The choice was mine. This is not to say that sometimes I don’t sit and focus on all the bad, but I try to be cognizant of the good too. I think I am really just having to train myself. Otherwise, I am scared of where I will end up and in turn where my children will end up.

Some people vanish only to appear at just the right moment. Just when the small circle of friends you feel like you inundate way too much with your sob story have done their part and you are scared if you call them one more time it will be too much,  a random note, e-mail, dinner, invite, hug, phone call will happen almost miraculously from a “lost” acquaintance.

If you can picture viewing a moving black circle from above. At one time I felt like I was in that circle, but it was HUGE. Wide open. Ready to go and conquer the world. Anything was possible and there were lots of other circles coming and going. Some got attached and came along for the ride. There really was just lots of circles always around. Some came and went. Through the past year or so, I visualize that circle as growing smaller and smaller, with fewer and fewer other circles in view. Just a few. And as my circle grows smaller, my mindset changes and my focus changes. Frivolous things become just that, frivolous. Mean, disrespectful, untrustworthy people become easier to spot. Good, reliable, steady comrades become more precious than gold. I worry terribly about the friends I have getting worn out, tired and bailing if this situation continues on for years and years. That is why I try really hard to “spread the love” in terms of who I call and how often. It is understandable. I ask you to remember back to before the diagnosis. What kind of friend were you to someone that went through an ordeal? Did you think about calling or stopping by, but you just didn’t know what to say? Did you intend to but never had time? That happens. Most people have the best of intentions. Often times they just don’t know what to say, how to say it or when to say it. I can tell when I see someone who is uncomfortable, not because they don’t care, but because they do and they don’t know what to say. Give those people a break. Start the discussion. Let them know you have missed them and if they want to help, they can just come and sit with you. Maybe they don’t want to hear every detail of how bad your life is now, but they just want to be your friend. Let them. That is who they are and how they can help you. Don’t try to force them to be someone they aren’t and in the meantime you will re-kindle a wonderful relationship I am sure you really need at this time.

I give you all of these words of wisdom in the hopes that I will be able to give you a different take. It is hard. Hard to see outside of our window of despair. Just try. Then let me know how it goes. I will do the same.

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)

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 (14)

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

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)