Living in the NOW

Thank you Patti Brown Photography for this wonderful family photo, 2008.

Thank you Patti Brown Photography for this wonderful family photo, 2008.

I am listening to the kids upstairs. Frances is reading a book to Brad. This is a rare occasion. It warms my heart and soul. I feel a peace I haven’t felt in a long time. Like everything is going to be ok. Is it? Will our lives ever be “ok” again?

It has dawned on me quite loudly in recent weeks that I am actually starting to accept what is happening. And as I do so, I accept Jim and who he is now vs. who he was. I also feel a sense of mourning. Each day it seems I mourn a part of him that is no longer.

I mourn his help as a father.

I mourn his beautiful handwriting that is slowly becoming intelligible.

I mourn our discussions, our communication, our ability to make decisions and co-parent.

I mourn his ability to be my Mr. Fix-it.

I mourn his interest in movies, books, music and the news.

I mourn his interest in the kids’ lives and my life.

I mourn our marriage.

I mourn our family.

I mourn his voice; his ability to speak clearly and with purpose.

I mourn our previous life.

I mourn my partner in just about everything.

Each and every moment of every day. I mourn.

 

At the same time, I am learning (not as fast as I probably should) to accept who he is NOW.

I am being forced to live in the present and only the present. I can’t think of the past. It is much too painful.  I am not at the point where my memories with Jim bring me smiles and warmth. They bring tears and heartache.

I cannot dream of a future; it is too unknown and too full of anguish, fear and loneliness.  All I can see is who Jim is becoming and the fact I am helpless to stop his progression.

Years ago I tried to read the very popular book, The Power of Now.  It just wasn’t in my personality. I naturally envision my future, our future and what we are going to do.  I treasure my past. My friends. My travels. My fun and my heartache. It is all part of what has shaped me into me. It has taught me my life lessons and given me the ability to grow into a woman that can take care of a husband, a family, a home and work full time.  It reminds me of why I married Jim, how we were, how we thought we were going to be. It is a sick cycle. It sucks you in unexpectedly and in a moment you are riddled with pain and a sadness that you can’t remove.

There is no “moving on”. Jim is very much alive and present. We are still in the early stages of this disease. I am very aware of the fact he will be declining and things will become even more difficult. I should cherish THESE times. But at the same time, he is not Jim. He is not the Dad he was or capable of being. He is not the husband. He is not the neighbor. He could no longer be PTA vice-president as he was just a few years ago. He could no longer have a top-secret clearance job as he did just a few years ago. He can no longer get our clothes separated into the right piles; Brad may get my socks and Frances may get his t-shirts. He no longer can remember the exact shelf or drawer to put a bowl or utensil away. He confuses the dishtowels with the washcloths.

No, I can’t live in the past. I can’t dream of our future.  Living in the present may be my only option but I am not sure it is an option I am happy with.  I don’t know at this point in time what would make me happy. Truly happy. How can I be happy when I have a husband that has a disease that has no cure?

I find happiness in the little things. Like listening to our children play together and read together. I find happiness in helping others. I find happiness in making a difference to others. It is the only way.

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

Fighting the Good Fight

Screen Shot 2014-02-17 at 11.34.29 PM

It has been a couple of weeks since I have posted anything. I just haven’t been able to muster up the mental energy to write something legible and clear.

All caregivers go through bouts of ups and bouts of downs. I have been in the later.

I had a birthday and turned another year older.

Valentine’s Day . Nothing else to say.

Work.

Kids.

Kids.

Work.

Relationship stuff. Stuff from our entire marriage; not related to Alzheimer’s Disease.  I have learned something new that this disease takes from you. It takes the ability to have a spouse that can work through marital difficulties with you. Like a marriage should be. When normal life hands you decisions and hurdles, you slowly figure out how to navigate by yourself. I have been in the midst of trying to wrap my head around this since Jim started having difficulties doing so about 3 years ago. I am sort of getting the hang of it, but there are still times I really wish he could help me make a decision or two. But this, this new issue is forcing me to deal with a MARRIAGE situation. It is not dealing with him forgetting a conversation or misplacing an item. It is way past something that simply makes you frustrated (again) and then you move on.

When a disturbance has seeped into your marriage from years ago, you are forced to work on forgiveness and understanding. Now I am made to do so without a partner. Without clear explanations and discussions. Without a way to disperse my anger or hurt through a conversation and eventual understanding. I have been reeling from the realization that Jim may still be in the early stages of Alzheimer’s Disease, but he is unable to fix some things that I needed him to fix. It is now up to me to clear my mind, my heartache and my resentment. I must forgive him without his help. If I needed to be strong before, I am needing the strength of Olympic Gods right now.

It is happening, but at an excruciatingly slow pace. And during the process, I have had to start over. Start over with my grieving. Start over with changing my personality. Start over with thoughts of our marriage, our years together, our conversations and shared experiences. It is almost as if at times I was being torn from the inside out. The cloud over my head was black, dark and unrelenting. I don’t think all of the cold, wet weather the past couple of months has helped. If I am able to move past my pain, I think that I will have accomplished a small miracle.

So I thank all of you for your support, love and understanding. I am so grateful.

Alzheimer's Disease, marriage

At an Alzheimer’s Advocacy Forum in Washington, D.C. April 2012.

Sidebar:

I recently met someone who has a family member with Younger Onset Alzheimer’s. The family started reading my blog. They had questions. So he called me.

“I have to ask you. I mean, you lay it out there. You don’t hold back.” (Actually, I do quite a bit.) “Does Jim read this stuff? Does he know you write about all of this?”

Yes.

Jim and I have had many discussions (mostly before we did our first interviews and before I started this blog) about if we wanted to share our journey and how much we wanted to share. He is (or was) very aware of the blog: what I write and how much I share. He trusts me to do what is right. He trusts me to stay true to the good intentions of helping others and educating people that have no connection to Alzheimer’s Disease.  We both agreed that if I sugar coat our life, my feelings, his battles and eventual loss of capabilities, I would be doing a disservice to all of the other caregivers  that are struggling just like we are and would read those sugar coated words and feel alone. They would think they are the only ones feeling anger and frustrations and trapped and helpless. What would be the point? It is nothing for Jim (or any other person afflicted) to be ashamed of. I will not hide him away and try to pretend that this is easy. It is not. And there is no reason anyone should be made to feel ashamed. It is a disease that affects the human brain.

This blog has the byline: Confessions of an Alzheimer’s Wife for a reason.  This isn’t Jim’s point of view. It isn’t from the vantage point of my children. I am not taking care of my parents. I am a wife and a mother of young children and I am in the midst of a life altering fight. I am sharing my grief, my anger, my frustrations, my pity parties, my support, my love, my surprises, my world. Our situation is very unique. I have no map or guidebook. I struggle each day to write my own battle plan while I take on an invisible foe. I strive to help others so that I help myself. There are days that I am so low, I don’t think I could go any further South. Then there are days that I feel strong and alive and capable of dealing with all of this. I try to share both sides and do so honestly.

Sometimes I sit and listen to music and cry. Cry for me. Cry for my kids. Cry for Jim. Cry for all of the dreams that will not be. And I am allowed to. I am allowed to find a release for the sadness that fills me. I know each of us on this awful journey take into the mêlée what we need to survive. We make it through however we can. I think it is different if you are taking care of a spouse vs. a parent vs. a sibling. I think it is different based on how they are doing. I think it is different based on your other responsibilities and support system. I think it is different based on personalities and situations. There are so many facets of this disease with no timeframe or consistent continuing thread to allow each family dealing with this atrocity any sort of definitive roadmap.

I speak out and I speak up. Not everyone can or wants to. I didn’t choose this path I am on. It chose me. I have made a promise to Jim to do the best I can. For us. For him. For Frances and Brad. For the millions of others that are facing the same demon.  I hope one day we will celebrate a victory together.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (9)

Dr. Jekyll and Mr. Hyde

Younger Onset Alzheimer's Disease, family, anger, love

Jim playing with the kids in the snow. Jan. 2014.

There is a part of Alzheimer’s Disease that is very common but doesn’t necessarily affect every victim.

In recent weeks, I have seen some symptoms and signs that Jim may be succumbing to this side of Alzheimer’s and it scares me. It scares me because if he continues and he progresses with worsening behavior, I am scared I will be forced to make a choice between him and the kids.

The one thing to keep in mind is who Jim REALLY is. The man I met, fell in love with, married, delivered two children with and have slept next to for nearly 17 years is a gentle soul with no unkind words (really, I am not making this up) and sometimes the frustrating inability to stand up to others. He has just always been a pretty happy go lucky kind of guy who minded his own business and never gossiped and very, very seldom raised his voice.

Now I am afraid this horrific disease is robbing us of this enduring feature of him. Just like with most of the Alzheimer’s symptoms, it is so difficult to put into enough adjectives to help someone who has not endured this battle to understand. But I will try.

I am sure you have heard before that people afflicted with Alzheimer’s become opposite of who they once were….quiet, shy, prim and proper people suddenly start swearing and speaking their mind. It is like all of the years they thought things but held back are released through a broken dam. I have seen a little of this behavior in Jim and I am hoping that this isn’t the case.

A week or so after we got our new dog, Duke, I was trying to engage Jim in a conversation about our future. About decisions I have been losing sleep over and decisions that will either be good for our family or can cause even more hardships. One of the things I mentioned was possibly moving. Not far away. Hopefully very close by. But, something with a first floor bedroom and bathroom. We currently live in a very old home that has a lot of character but not very practical. There is always a ton of maintenance that needs to be done and Jim just isn’t able to anymore. No first floor bedroom and only a half bath downstairs. Plus, the back door has been giving him a fit. (a few nights ago I actually went to bed before Jim but was forced awake by one of our cats around 2 a.m. When I made it downstairs to let him out I saw the backdoor was wide open with the temp outside at 25°).  So, I mentioned moving to him. His first reaction caused me to drop the subject and forced me to realize that I am in this alone. “I told you not to get a dog.” That was his reply to our dilemma.  It wasn’t just the words, but the way he said it. Very hateful and spiteful. He just repeated to a friend this past weekend that he doesn’t like having the dog. I have to shake my head. Out of all 4 of us, Jim is the one that does the most with the dog. He walks him. He sits on the floor for hours (literally) and rubs his belly. He talks to him like he is a person. He is constantly doing something with the dog. Yet, when asked about Duke he will tell you he doesn’t want him. Not once has he complained to me or the kids or not wanted to help with his care. He will only say he doesn’t want the dog if you ask him. It is just bizarre.

That really wasn’t too bad as far as not being able to reign in his temper or control his voice. Truth be told, I have always been the sterner one and I have worn the title of  “mean” parent since we had our kids. No problem because I usually had the support of Jim and he was sort of the nice guy that could sweep in, lighten the mood and the load and balance the playing field. It seems that is no longer the case for us. Our balancing act it teetering.

A few weeks ago I was finishing a jog and doing my usual cool down walk and a neighbor a few doors down asked how Jim was. After I replied, she informed me she had never heard anyone yell at their kids the way she heard him yell at ours. What??? Jim? Impossible. Me? Yes. Him? A resounding NO. But I have heard him snap a few times, unexplainably at the kids. I have seen him get angry, in ways  I have never before. Not consistently and not often. But unlike I have witnessed him in all of our years together. And just like when I was figuring out something was wrong with him in the first place, when the whole world was telling me I was crazy, I see a different him now. And it scares me. Not for me. I feel like I can handle him and take care of myself. I am scared for Frances and Brad. I am afraid this is what they will remember. I am terrified he will become violent, like so many others. I am sickened to think it will all come to an angry outburst that will force my hand long before I am ready. Or before the kids are ready. Or before Jim is ready. He knows. He knows if he loses his ability to control anger and gets violent that he cannot stay with us. I really think that helps him. He loves his children and me more than anything in this world. He doesn’t want to leave us. He wants to grow old with me. He wants to watch his children grow up. And he should be able to. But I will not be able to let him stay if he becomes violent.

I see him gritting his teeth so that his jawline moves silently back and forth. I see the pressed lips and the eyes that are black and unreadable. I feel the tension in the air.

A few days ago the kids were home from school due to the weather and I had to leave to go to work. Brad begged me to stay. He said he didn’t want to stay alone with his Dad. These are terribly hard words to write. But I want, no I need, for people to understand what this disease does. The Dad that our son would not want to stay with is not THE REAL DAD! There is an imposter that has moved into our home. Sometimes he does a fantastic job imitating our Jim. And sometimes he has stolen our Jim and hid him in a dark closet that we can’t seem to unlock.

Jim and I had some heart to heart conversations not too long after he was finally diagnosed. He was still himself (for the most part) so I know his wishes. I know him. Even so, I worry about this new temper and this new uneven demeanor. It is something I dread.  Please, please don’t make me choose between my husband and my children. Please don’t let Jim become angry and ill tempered. Please don’t let him become sexually inappropriate. (Another very common issue). Please don’t let his anger seep out of him. We all have some form of anger in us. Alzheimer’s Disease erases your filter. It causes you to lose the ability to hold your tongue. So when you (and yes, Jim) are sitting at a ball game and there is a kid on the field that makes a mistake and you want to say something completely rude and inappropriate, your filter kicks in and you remain silent. (or most mature adults do) When a kid is acting inappropriately, you refrain from saying anything because the parents are sitting two rows behind you.  When your children are being silly and laughing and having a good time, you don’t snap at them tell them to stop because they are being too loud.

Please Jim, please stay in control for as long as you can. We still need you.

Younger Onset Alzheimer's DIsease

Jim and Duke out for a snowy walk. Jan. 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 (25)

Younger Onset Alzheimer's, frustrations

Visiting Mount Charleston, NV 1996.

1:43 p.m.  What time do I need to pick Brad up from school today?

1:45 p.m.  Does Brad have Odyssey of the Mind today after school?

1:50 p.m.  I am sorry to bother you. What time do I need to get Brad up from school?

In the past few months, this has become the norm, not the exception. The norm. It is now the exception if Jim remembers something. It almost calls for a celebration.

Since he has started to decline more and more as far as short term memory, more friends and acquaintances have noticed a change. Just tonight someone asked me if his leg was ok because he seemed to be walking different. Yes he is. He is now doing an “old man shuffle” as I call it, most of the time. PJ’s are usually on by the time I get home from work. He says they are comfortable and I have no argument. Yep, pajamas are nice at 5:30 p.m. Wish I could put them on and relax for a night.

I hate Alzheimer’s Disease. I hate the fact I have no control over our destiny. I hate the fact that no matter what I do or how I do it, nothing is going to change. I hate the fact that I lose my temper. I hate the fact that I am so busy that I am seldom around for the kids when they really need me. I am working. I am working. I am working. I always seem to be working. Again, I am so grateful for having a job, but sometimes the 8- 5 grind doesn’t gel with the Alzheimer’s Disease/Kid meltdown/Life agenda. Plus I have a job that requires some nights and some early mornings. When my kids are both crying for me to stay home and telling me they don’t want to be left home with Dad, I am torn. I am torn because I want to stay. I need to work. I want to be there for them.  Yet we have bills and need my paycheck. It isn’t fair to Jim that they feel this way because I know how awesome of a Dad he is. He was. But I can’t. I can’t stay and I have to leave. I am a torn, broken woman. I think my dilemma is similar to that of a stay at home parent. Except my spouse is living with us. And instead of learning from mistakes like children usually do, my spouse is repeating the same annoying stuff. And we are supposed to understand and be patient and carry on like nothing is wrong.

I sometimes see other people who seem to have everything so easy. I know deep down this isn’t really the case, but when life is handing you lemons, it is hard to see how to make lemonade. It is getting harder and harder to keep the REAL Karen alive. The exasperated Karen seems to be pushing her way to the surface and I am trying so hard to not let her out. Now the smallest things become HUGE difficulties to deal with. The cable company screwing up. A birthday party coordination. Just trying to keep up with paying bills and going through the mail becomes tasks that should be congratulated  when done. Yep. I congratulate myself often now for things that were so simple, routine and easy just a year ago. Then if you throw in anything extra, like an oil change, coordinating a play date, a scam artist calling the house, changing any part of the daily schedule; it all becomes a huge undertaking.  Something so simple and easy becomes completely overwhelming, daunting and a burden that is almost insurmountable. It is insane how this happens, but it does.

Frances told me tonight,” Sometimes you seem to get upset with every little thing that isn’t done right or needs to be done. And sometimes you just don’t seem to care. We need to find a happy medium.”  Yes. She is correct. Yes. She is going to be 13 on Saturday. And YES, I am very proud of her. She gets it but that doesn’t mean it is any easier for her. I am trying to find that happy medium. But as I am constantly being pulled in so many different directions while watching Jim observe from the sidelines, I am struggling to get to that place. I know I can. I want to. I am trying. But, it sometimes appears impossible. But nothing is impossible if you are willing to try and want it bad enough.

It makes me so sad. There is no longer any input from Jim. He struggles each day just to follow his list and to follow a conversation. Sometimes he seems to be fine, but those moments are getting rarer and rarer. And that makes me sad. Even though I am aware of what is coming, when these stages hit, knowing what still lies ahead only makes me guilty for not appreciating what he still can do now.

I am a proud woman. I am a proud woman that has to accept help. I am a proud woman that has to accept sympathy and knowing looks and suggestive comments and do it with a smile while being gracious and grateful. Yes. I am grateful. For so much.  So very much. But just because I am grateful doesn’t mean I  cannot be resentful. I am resentful that I am not able to live up to my potential at my job. I am resentful that I am not able to be a better mother. I am resentful I can’t keep my house clean or clutter free. I am resentful that I no longer have a husband in the sense of the word but I am still married. I am resentful that my children live with their father but he cannot be the Dad that he is capable of being. I am resentful that we worked so hard on our marriage for so long and now our relationship is a joke. There is no communication. There is no intimacy. There is no support. There is no acknowledgement of anything sacrificed or done on behalf of anyone. I am just done. Done with it all. But I can’t be. I will get up, fix a meal, clean, work, check homework, drive to practice, work, and sleep. Sleep is my friend. And my enemy. When I sleep too much, I don’t get enough done.

It is a bitter time in my life. I never knew how strong I could be or how strong I would have to be. I am realizing it now.

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

Funding Anyone?

Alzheimer's funding, alzheimer's disease

Last month I was driving to work in the early hours of the morning and I got angry. I was listening to a story on NPR about how in the 2003 State of the Union address, President George W. Bush committed 15 BILLION dollars to help fight AIDS world wide. I commend him and think that those efforts a decade ago are being felt now in the accomplishments seen in the fight against AIDS. Yes, I understand there are still people dying from AIDS, but the numbers are down. People are able to live productive, relatively healthy lives after a diagnosis. There is now hope, where there once was none. Truth be told, the US has spent more than $50 BILLION worldwide since that speech on the global AIDS fight.

Do you know how much our government has budgeted right now for Alzheimer’s Disease research? $480 MILLION. That is a long way from a billion and certainly an even longer way from $15 BILLION, let alone $50 BILLION.

Just to be clear about how ridiculous the numbers really are: our government spends OVER $140 BILLION a year on Medicare and Medicaid for those with Alzheimer’s Disease. They spend $480 MILLION on research to find a cure so that they won’t have to spend an increasingly astronomical amount on care. Are you getting the picture here?

WHY CAN’T WE COMMIT THE SAME AMOUNT OF MONEY FOR A DISEASE THAT HAS NO CURE, IS GUARANTEED TO BANKRUPT NOT ONLY OUR COUNTRY BUT DOZENS OF OTHER COUNTRIES AND DRAINS FINANCES, EMOTIONS AND FAMILIES FOR YEARS AND DECADES?

It is hard to compare apples to apples. You never want to have your words misunderstood. I am not, in any way saying we shouldn’t support the fight against AIDS or any other disease. If you are someone who is fighting that fight or losing a family member to it, the last thing you want is some blowhard talking about cutting funding and moving it to another worthy cause. I am not asking for any cuts to be made for other disease research.

They are all worthy causes.

alzheimer's disease, funding for research

My mother suffered a heart attack not that long ago. I was scared. I was completely taken by surprise and rushed to be by her side. But after a few days she was home, taking it easy and a year later she is enjoying celebrating 50 years of marriage to my father. I still worry and I still harp on her about taking care of herself, but somehow it is so completely different than watching Jim succumb to the overall evils of Alzheimer’s Disease. She was able to go back to her “normal” life and not lose any mental or physical capacities. There are not financial implications. There are no long term plans needed. She has a warning, she has doctors orders, she has hope.

My father is a prostate and skin cancer survivor many times over. Again, with each diagnosis, surgery and waiting game, I have gone through an array of emotions, which always includes lots of worrying, crying and plain terror. So far, he has remained cancer free, only needing large chunks of skin removed every couple of years. His prostate cancer seems to be in check. Over all, I think that having these scares has made me that much more grateful to still have both of my parents in my life. I am thankful each and every day they are here to help me because they are, at times, my saving grace and my shelter from this storm.

Cancer and heart disease run in my family. Both sides. 3 out of 4 grandparents have succumbed to one form or another of cancer. 3 cousins have been diagnosed, 2 are still with us; Because of advances in treatments which came directly from research. I have lost family members that I loved dearly to cancer. I raised over $4800 while training for and eventually running a half marathon for the Leukemia and Lymphoma Society in San Francisco. I dedicated that run to my cousin Jay, who passed away much too young, at 14, of leukemia.

I have seen the fight and the inability to win. But along the way, I believe the difference is in the ability to have hope. To have the chance to fight. The chance to win. With Alzheimer’s Disease, victims are not given any of those things. You are given a diagnosis and sent home to do research or not. To cry, or not. To tell others, or not. To raise awareness, or not. To see the doctor in 6 months, or not. To make financial plans, or not. To seek spiritual help, or not. There are NO rules, guidelines, or definitive game plans. You are left to your own devices.

I am beyond grateful for the fact that others before me took up other causes that needed research, funding, awareness and cures.  People that lost loved ones. People that were hurt, angry, sad, lost and eventually found by their hard work and dedication to a cause that had taken from them someone that could not be replaced.

Can anyone explain to me why we can’t do the same for Alzheimer’s Disease? Why can’t more people speak up? Why can’t more funds be allocated and disbursed? Is it going to take another Rock Hudson, Elizabeth Taylor and marches in the streets?

The problem arises with the simple fact that Alzheimer’s Disease isn’t contagious (though it can be hereditary).  It affects “old people” (tell that to the thousands of Younger Onset patients). No children are affected (except for the children and grandchildren that are scarred for life by witnessing the Long Goodbye).There doesn’t seem to be a lot of outrage at the lack of answers or cures.

Well, there is outrage with a few of us. I am mad. I am mad that there are people that can speak up and don’t. I am mad that people whisper and try to hide what they are going through. I am mad that frivolous things are funded but more research and programs to help families dealing with this horrible plight are not. I am mad that there are so many of us who have no help or hope or support.

Which would you rather be diagnosed with? Cancer, AIDS, Heart Disease or Alzheimer’s Disease? 3 out of those 4 have treatments and survivors. 1 does not.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (10)

Inquiries answered.

Dealing with Alzheimer's and holidays.

Jim and I New Year’s Eve, 2013.

Happy 2014! I want to start off the new year by answering a few questions that have been asked (some repeatedly) since I started this blog last Feb.

I am working on a new post as well and have decided that I will share even more and if possible, provide more insight into the nitty gritty of living with Younger Onset Alzheimer’s Disease. It is hard sometimes to open up about something so personal, but the overwhelming response of love, support and camaraderie is healing and soothing to my soul.

For now, here are some questions and answers for you.

As always, thank you so much for all of your love, support, encouragement and feedback. I have found this journey to be a bit more survivable because of all of your kindness.

How did you first know something was wrong with Jim? What was it like before he was diagnosed?

About 6 or 7 years ago, we started having a lot of problems in our marriage. We went to a marriage counselor and it was very frustrating. I would go in bitching and complaining about Jim, he would agree with everything I said while promising to do better and the next session would repeat itself all over again. I felt very guilty for constantly being upset with him and needing to correct him. I was told I was too hard on him and expected too much. (not by Jim) I couldn’t understand why he was at times saying things that just didn’t make sense; otherwise seeming completely normal and like there was nothing amiss. There are a couple of examples I have used, the easiest one relates a time we were driving down a road under construction and one of the kids asked how they determine the speed limit. Jim shot back quickly “by the number of potholes.” An argument ensued and it was just one of many like this that would happen sporadically over a couple of years. At that time, Jim was not forgetting anything. He wasn’t really losing anything. He was still pretty much himself, but at times not. I was really contemplating leaving him because I was just so unhappy and so was he. We couldn’t afford to separate and soon enough his “episodes” became more noticeable and more common. I knew something was wrong with him after he got confused about a bridge in Georgia. I honestly believe the reason Jim was able to be diagnosed as early as he was has a lot to do with the fact that I am a type A personality, that I knew him very well and that I am so in tune with how he normally would be. It wasn’t in my personality to just let things slide. I also believe that at times it is good that we learned so early, but I also think it will make our living Hell seem that much longer.

I wrote my first post about this very topic. Click here to read that essay.

Where is Jim in the progression of the disease?

This is a tricky one to answer for me. I will tell you that he originally was diagnosed with Mild Cognitive Impairment with the likelihood of developing Younger Onset AD because of the history in his family. After our follow up visits to the NIH this past summer, we received confirmation that Jim is now diagnosed in the Early Stages of Alzheimer’s Disease. His short term memory is very bad. He is forgetting names, conversations, what he just did (or didn’t do) and little nuances like whether or not he should take a shower or shave. He is not able to multi task at all. He is still driving, but only in places he is familiar with (we have had him tested for this and have gotten two different ok’s). He no longer seems to be able to relate to things going on; seeming aloof or indifferent. He never asks about finances or kids schooling or my work. He is able to help with dishes, the laundry, math homework and other easy chores around the house. He gets confused pretty easily and I have noticed his beautiful handwriting is no more. It is slowly turning into shaky, hard to read verbage. He keeps lots and lots of notes to himself to remember what to do and I think at times what not to do. He is losing many things (sets of keys, passport, license) He has kept his sense of humor, his smile and a fantastic attitude. He plays tennis, jogs and walks our new family member, Duke. He tries hard to maintain his core self and to remain a steadfast partner to me and father to Frances and Brad. I think he does an exceptional job. So much stronger and better than I would ever hope to be in the same situation. Many times someone will meet him for the first time and carry on a brief conversation with him and have no idea that he is suffering from such a cruel disease.

How are the kids handling all of this?

This is extremely personal and I feel like it would be their place to share, not mine. Although they are both aware of my blog, Frances reads it on occasion, but it seems to me that this is something for them to answer. I will say I have taken them both to a counselor. I try to remain open about what is happening to our family. I try to include them as much as they want in events and discussing how Jim is doing. I will tell you that it is very, very difficult to watch them get frustrated with their father and then see the regret and the guilt that soon follows (just like I often go through). They are both extremely bright, loving and active kids. Jim and I really just couldn’t be any prouder.

Does Jim read the blog or even know about the blog?

Yes, Jim knows about the blog. We had very long, heart to heart discussions before I even started. He started reading it once or twice and it was very difficult for him. I don’t believe he has read it since then.  He has been 100% supportive 100% of the time. Not once has he asked me to stop or to not share something. He trusts me  and wants our situation to help others. It is very important to him to have a change come about not for him, but for our children.

Will I write a book?

I honestly had never considered this until I had many people ask me. I am pondering and contemplating and deciding. I will keep you posted. I really am not a writer by trade in the least bit.

How do I manage financially?

Well, I work full time. Jim receives a retirement from the Air Force and he receives Social Security Disability. Plus, we have been EXTREMELY blessed with help with dinners, gift cards, monetary donations and help in many ways. Without the help we have received, I am not sure we would have made it this far without losing our home or car or going hungry. Ok, I don’t think my parents or closest friends will let us go hungry. But, you get the idea. It is very tough and I know it is only going to get tougher when we need someone to stay with Jim during the day or full time.   It seems when I am desolate and down to our last few dollars, miracles happen. I able unable to explain it any different.

What is my plan? How do I plan on making a difference?

I will continue to advocate with our policy makers and I will continue to share our story. I have a dream though. I would like to start our own Foundation. I would like to work full time on helping other caregivers. I have a plan, but I just don’t have the time or resources yet. I am working on it. It just isn’t happening as fast as I would like, but I am an impatient person. Right now I struggle with my work demands and hours needed elsewhere. I am acutely aware of how this is changing and how much it is causing me stress, lack of sleep and unhappiness. In reality I need to work. For not only financial reasons, but for my sanity and to make me have a life outside of my own, tiny, self-centered world.

How do I manage?

I am not sure I feel like I do. I often wonder how I am going to survive this journey. I wonder if I will survive the next round of declines and financial decisions and children issues and I am not sure I can. But, I live another day. I focus on today. I focus on what I can do today that I couldn’t do yesterday and I can’t do tomorrow. I can tell you that my parents and my friends have buoyed me above my fray and kept me from falling into an abyss of darkness I wouldn’t be able to return from.  I just do the best I can while I can. I constantly have faith that something better is just around the bend. There are times that I waiver from this belief and it is at these times that I am at my lowest. I struggle to pull myself out of any desolute and despair I feel and try to re-focus on what I can do now. What is in my control? What isn’t in my control? Being a Mom. Being a friend. Being a wife to a man that would be so terrified to know the anguish and stress he has caused his family and will cause his family.

Do I make money off my blog?

No.

Do we attend a support group?

Yes. I have connected and bonded with several other women who struggle with the same frustrations I do. Jim meets at the same time with others afflicted just as he is and they all seem to be about at the same stage of the game. We meet once a month and I am the youngest and the only one with children at home. It is coordinated through the Alzheimer’s Association and utilizes volunteers. I look forward to our gatherings and I feel a kindred spirit between us.

Has Jim tried coconut oil, fish oil or any other remedies?

Yes, yes and yes. If it has been published and has been regarded as a possible help with his symptoms, we have tried it.  But I do thank you for the continued sharing of such articles and information. We even tried the hyperbaric chamber.

I hope I have answered your questions and I thank you again for reading my blog, sharing your stories and sending me so many positive thoughts and well wishes (and advice).

May 2014 bring us all closer to the one thing that will bring us true happiness. A cure for Alzheimer’s Disease. 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (10)

Happy 365 Chances to Make Someone Else Happy

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Happy New Year. We say these words to each other in merriment. We say them to strangers as a greeting. It is something we wish for one another but how often do we help others actually have a happy new year? All year long?  Do we celebrate together and then toss the sentiments aside once the celebration has worn off? Do we discard our desire for others to be happy along with our annual resolutions? Why is it so difficult to stick to lists of things we want to better about ourselves? It is also sometimes just as difficult to remain a steadfast partner, friend and caregiver.

When the clock was striking 2000, everyone was worried about Y2K…remember? Jim and I brought that significant time passage in together on the island of Martinique. It was a blast. We had a spitball fight with the other dinner guests at our resort (a tradition in France, so we were told) and met and danced and rang in a new century with people from all over the world. We had to fly out the next day and there was lots of chatter about whether or not the planes would be able to take off. They did. We were disappointed. We were more than willing to stay another day in paradise. Later that year I would become pregnant with Frances and our family would grow and become enhanced in ways I could have never imagined. I also couldn’t have imagined at the time that in just a few years I would be mourning Jim every day; while he is still fully alive and completely healthy other than his early stages of Younger Onset Alzheimer’s Disease. I suppose it is a blessing to not have a crystal ball. I look back and can see our youth, our love, our happiness. I cannot fathom feeling, looking or living that way again. All I can see now is Jim’s progression and the decisions and work I have laid out before me. How I long to have the ability to be carefree and full of options and life as we were just years ago.

It will be a new year. But will it be a happy one? We are ultimately all in charge of our own happiness, regardless of what life hands us. Keeping this in mind, I believe the only way I will be able to remain happy is to focus on the kids. Focus on helping others. Focus on making it a “happy all year long” for the many caregivers that are going through this journey. I will remain steadfast in my determination to speak out and educate. I have been blessed this past year with new friends that have stepped up to the plate, old friends that have been a beacon of support and love, much needed assistance from perfect strangers and the love and affection of two children, two parents, a brother and a husband that remind me everyday what matters most. I want to pay it forward. With a little money and a lot of time, I plan on doing this. Just finding that money and that time….

It is hard, very hard, to remain strong day in and day out. It is hard to rely on others for help. It is easy to concentrate on helping others at the same time we ourselves are needing help.

It will be interesting to read these words again in 365 days to see how I feel, where we are and what changes have occurred in our world.

I ask that each of you focus on making 2014 a year to find wonders that surround you, find love from within and to help others make this a happy year, all year long. The benefits you will receive will far outweigh those that you give. And it will make our world a better place.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comment (1)

Merry Christmas Story Telling

 

You-Are-Not-Alone-In-This-Motivational-Love-QuotesI want to wish each and every person a very Merry Christmas. When I started this blog back in February, I had no clue of the reach I would have around the world. I have been amazed at the response and I have been humbled by the support and words of encouragement. I am inspired daily to keep going and to do more. Sometimes I am not sure I can. Other times I don’t think there is anything that can stop me. As I sit looking at all I have to do in order to be ready for Christmas morning, I would be remiss if I didn’t write a special post to let all of you know how much your love and kindness have meant to me. I get many notes and messages telling me how grateful many readers are that I share our story. But our story is really the story of  many. In the process, stories are shared with me. I cry. I laugh. I get inspired. I would like to take this special time of the year to share some of the very touching e-mails that have been sent to me. My hope in sharing these heart wrenching tales is to help you not feel alone and to help educate those not familiar with the long goodbye process of Alzheimer’s Disease. I am sorry I am not able to share ALL of the notes I have gotten, but since there are well over 200, I will save some for later and  keep this a reasonable length. I thought Christmas would be a wonderful time to share these stories with EVERYONE. For me, the best Christmas present would be a cure for Alzheimer’s Disease. Since that doesn’t seem likely between now and tomorrow, I will settle for lots of help and support getting a cure to come about in the next year. (I am ambitious) Or at least help spreading the word and contacting those that can make a difference; Your Congressmen and women. Please let them know how important it is to keep funding for Alzheimer’s Disease Research in the budget. Let them know you are watching and passionate about this. There is no other way we are going to see this happen. Please help with my Christmas Wish by contacting them. Please visit this page for links and information on contacting your representative. There are no excuses not to do this.

In the meantime, please read some (I will continue to share over the coming months) enlightening and heartbreaking stories:

You have written about my thoughts, concerns, breakdowns, anger, and hope……lessness. My husband was an airline pilot.  Smart.  Funny. After a year of tests, he was finally diagnosed at 55.  I had two children at home, the youngest was 12.  I know you know my story… you wrote about it. We, too, became involved.  Peter (my husband) was chosen to be a member of the National Alzheimer’s Association Advisory Board.  We gave speeches.  We too, walked on Washington and spoke to our Congressmen.  We were featured in ads for the Alzheimer’s Assoc. and in training videos for caregivers.  For the past 5 years our newspaper has been doing an article on Peter which appears on the front page of the Sunday-after-Thanksgiving edition.  They are following him ‘until the end’.  We were asked to appear on FOX news and with Tom Brokaw, and on and on.  It was exciting and we felt we were helping the cause. 

Yesterday, the day I read a portion of your blog, I put Depends on Peter for the first time.  It was long overdue, but I haven’t wanted to take that step. Two things you wrote on that first post I read, jumped out at me and made me realize that perhaps I am not alone in the thoughts that are constantly doing battle in my head. Shortly before Peter was diagnosed, I found out he had been cheating.  I was in the process of figuring out if i wanted to leave (yes, I did) when he was diagnosed.  “My parents raised me to take the high road, not the easy road.”   I stayed.  Then, when our public appearances waned and his life was not as busy,  I found out his “wandering” had continued.  He asked me for a separation “So I don’t have to lie to them (his girlfriends) anymore. “We could not afford two households, and I knew there was no one else who would care for him when things got bad, so I stayed.  I made his meals and washed his clothes while he went to bars and took trips with his girlfriend of the minute.  Since AD no longer afforded him the ability to cover his tracks, the kids found out and told me I should leave him.  My kids!!  But “my parents raised me to take the high road, not the easy road.” So, I stayed. I didn’t want my kids to end up having to take care of him when all the girlfriends figured out what was going on and left.  Which they did. I once again took off his wet and dirtied clothes and once again scrubbed the floor. Then I went and got the Depends .  “This…this…cardboard” he said as I put them on him.  “It will be ok.  This kind doesn’t get wet” I said.

In September, Peter lost his balance, fell head first into the street and suffered (what I believe) was a concussion.  He was taken to the hospital via ambulance as he had a large gash in his head for which he received stitches.  He has not been the same since.  He was in the hospital for over a week, then rehab as he was no longer able to stand nor walk.  After two weeks of rehab and no improvement, insurance refused to pay any longer and he was to be released.  However, they would not release him to my care as he is considered a “two-person assist”.  I was given three days to find a facility that would accept him.  On Oct. 18, he was admitted into a personal care home.  From the moment of the fall he dramatically changed and has not recovered…at all.   He can no longer stand, walk, see (very little), speak (very little and not intelligible), nor feed himself and is completely incontinent.  He only knows who I am on rare occasions and doesn’t recognize our children at all.  He is not aware of his surroundings. Sometimes, though, as I try and make some conversation which he shows no sign of understanding, he begins to cry.   It has been a very difficult few months.  I wish I could say life has become easier, but it has not.  Under the circumstances, I thought I would have a sense of relief, but I do not.  I just find myself on another path of dealing with this disease, completely as unprepared as I found myself on the past paths. 

          -Thank you J for sharing such a personal and intimate look into your new life.

This time of year is really hard for both Henry and me. I don’t know about you but I feel I am doing more and more and Henry is unable to do less and less.  I can’t believe what a decline I have noticed within the past few weeks.  I don’t know if it is because he feels down at this time of year or that his situation is progressing. I am really scared as even though I know what is happening, I don’t want it to happen.  I try to do all the things we used to do together, having to see if there is some kind of happy response.  We went for our Christmas tree and when he was well this was such a happy time, picking the tree, tying in on the car, getting in the house and then starting to decorate it.  This year it was entirely different.  It was like Henry didn’t care one way or another whether the tree is there or not.  It seems that everything I am trying to reinvent of our past is not working and then I become depressed because I have to stop and say listen what is wrong with you, it is never going to be like that again.  Even though I know this, I always have a glimmer of hope that one day all this will go away and he will be like he was 25 years ago.  I miss those times.

Our tradition was on Christmas Eve we would have all my family get together for a big dinner and celebration with my Mom and Dad in addition to all the children, grandchildren, etc.  and Christmas Day, we would celebrate a traditional Hispanic Christmas with Henry’s entire family.  I am trying to keep my Mom and Dad’s tradition of having the entire family over and I have decided do this the past few years because I feel if one of us don’t try to keep our family together, we will be stranded all over the place and sooner or later everyone will be parted from each other.  This year, I am hosting the Christmas Eve tradition again, but in all honesty Karen, my heart is so heavy that I am just going through the motions.  I am scared how Henry is going to be because one moment he can be fine with people and the next moment, he can either be very withdrawn or to the point of becoming angry and being embarrassing as to what he says.   Even though people know the situation, no one really knows what it is like unless they live it on a daily basis.  The different mood swings, the point of being frightened, the crying as to why or what is happening….Even though people say they understand, they really can’t imagine how difficult it is just to keep a somewhat normal daily life.

Henry spends most of his day watching TV.  He is afraid to go outside without me because he is afraid of getting lost even though I have the Medic Alert for him.  He tells me he is happy being with the dog until I come home from work.  I don’t know if this is such a good idea and have tried even with the Doctor’s help but no accomplishments.

-Thank you Denise for opening up to me and for your very kind words.

My husband was diagnosed in February of this year with Early Onset Alzheimer’s at the age of 56.

He retired as an Alabama State Trooper in July 2010, due to what we were told after a hospital stay was stress and anxiety. He started being treated for stress in 2007. He began misplacing things all of the time. He always thought we were moving his keys, watch, wallet, you name it. He was a bomb technician, firearms instructor, Swat team specialist and also a contract employee for Homeland Defense as an instructor, in EOD and Haz-mat. He was very educated and was a highly respected law enforcement officer for over 33 years. He started having problems with money and numbers in 2010, which increased his stress levels. He was taken to the hospital, for what they thought was a heart attack and after a battery of tests, the doctor said it was stress and he needed to retire. So we did. He worked part time at a friend’s gun shop, only to become agitated on a daily basis. He had problems completing the background paperwork for gun purchases, also with making change, etc. We went to our family doctor several times in 2011 and in 2012 he had a brain scan done and he told us it was stress causing mild cognitive impairment. He scored 23 on the mini mental evaluation in his office. He changed his medication once again and told us to reduce stress as much as possible. There were so many times I just wanted to leave, but I loved him with all my heart and couldn’t do that to our children as well. It scares me the thought ever went through my mind. We have three sons all living at home. Our youngest is 13, our middle son will be 21 in January and just graduated the police academy and our oldest is 22 and is in his 4th year in college.

We went back again in August of 2012, he repeated the mini mental evaluation and he scored 21. Two weeks before our appointment for the neuropsychologist testing, we found out our insurance didn’t cover mental health, so our portion of the bill was $950.00, due at the time of the visit. We didn’t have the money, so I called and asked for a referral to a neurologist and we were able to get an appointment in a little over a week. When they started asking him they day, the month, year, who was governor, what county he was in, the list goes on and he couldn’t answer most of the questions. I was in a state of shock. They did an EEG and it showed slowed brain activity, they started him on Aricept and he referred us to UAB and we were able to see the Director of Neurology. He is the most amazing doctor I’ve ever met. He scored in the low teens in the mental evaluations. He ordered a PET scan, but our insurance wouldn’t cover it, so he had a SPECT scan done instead. The doctor said it was basically an older version of the PET scan. He called me the evening after the scan at home. We had been home about three hours and he told me John had Alzheimer’s. He said he was pretty sure that’s what it was, but wanted to scan to confirm everything. He said he could not drive any longer and told me to apply for social security disability benefits. He is in the moderate stage of Alzheimer’s and he is too far advanced for any of the clinical trials. I cried after speaking with the doctor. How do you tell someone this kind of news? I knew something was very wrong for a long time, but was misdiagnosed for several years. I never in a million years would have dreamed this would happen to us at such a young age. I am 45 and John is 57.  Your blog reminds me of the overwhelming stress, the grieving for what’s been lost and what is ahead in the future. Bringing home the groceries and not getting any help because he doesn’t pay attention that I’m carrying in six bags at once. I don’t have to tell you, because you are living it too.

– Thank you Kimberly. You speak for so many.

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

Our BIG Christmas Gift this year.

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Meeting our newest family member, Duke, for the first time. Dec. 2013.

For the first time in my life I own a dog. A beautiful, smart, sweet, 5 month old bundle of joy. Hard to imagine that at 43 I have never had a dog. There are lots of reasons why ,starting from when I first asked for one around the age of 4.

Through the years I have owned cats (many), fish, parakeets, a turtle or two and hamsters (ok, the hamsters were Frances’). After I got my first apartment, within a couple of months I had a kitten. So, I have loved having a pet, just never a dog.

We have lots of friends with dogs. But I don’t coo and cuddle and show much interest in their dogs. It isn’t that I don’t like dogs, I actually do. But none of those dogs are mine. None of those dogs have a history with me. They aren’t there when I wake up in the morning or go to bed at night. They certainly aren’t sitting next to me making sweet dog sleep sighing noises as I type away on my computer.

The kids have been asking for a dog for years. As most kids do, they want everything: Cats, dogs, birds, fish, flying squirrels, rabbits. You name it, they have asked for it at some point. But the dog thing has been pretty consistent for many years. I could relate. I used to want one too when I was a kid. Something finally clicked this year. They are 9 and 12, so they are old enough to help with the care of the dog. They are full of energy. They don’t sit in front of the TV or computer for hours so they can be active with the dog. They both are good with animals and have demonstrated (somewhat) with the cats that they will help out. This year, a dog was top of the wish list at Christmas for them both. (I have since found out that was a planned act of collusion.)

When I finally made the decision to get a dog, everyone I told had the same reaction,”NO. Don’t do it. Are you crazy? You know how much work they are? You already have too much on your plate. You are too busy a family.”

Well, as I have mentioned before, I am hard headed.

Guess what? We got a dog. A Border Collie from a rescue organization. Getting this dog was more cumbersome than having a kid. Referrals, more referrals, a home visit, follow ups required. If only every parent had to go through this….

Wanna know what changed my mind? Frances.

Several months ago she said something that honed in on my weak spot.

“Mom, you know if we don’t get a dog soon, it will be too late. I am almost 13 and in a few years I won’t want one anymore and I will have spent my whole childhood without a dog.”

Bam. There you have it my friends.

So, I started warming up to the idea and REALLY thinking about the pros and cons. The pros won.

I did research and realized that the dog would not only be great for the kids as we deal with Jim, but the dog will be great for Jim as well.

Whenever you ask Jim what his favorite animal is, his reply is always the same. A dog. He had a dog (Sasha) growing up and I have heard many, many stories ever since we met about Sasha. But when I would mention us getting a dog, he was always very adamant about not getting one. I am not sure why.

Now that we have Duke, he is very happy. Jim plays, pets, talks to and spends all day with our new family member. I asked him why he never wanted one when he is clearly so happy having a dog and his reply was, “because they are a lot of work and I didn’t think we could commit to that.”

Well, we have and it has been great. So far anyway. I don’t want to jinx ourselves. We were very fortunate that the foster mom taught Duke many things before he joined us.

I think I made the right decision. All of us have bonded with him. Brad has been having a hard time with the obvious decline Jim has shown in recent weeks and now that Duke is here, Brad is happy and focused on something else.

Frances sees Duke as someone to take care of and another reason to make some lists and to work on a project.

Jim has a companion and a buddy.

I have a family that is happy and relaxed and able to think about something other than Alzheimer’s. And I have fallen in love with him too. I miss him while I am away at work and worry that Jim is remembering to let him out or to put him in his crate. But it is a different worry than I am used to now. It is a worry that I have some control over. The obvious irony is not lost on me.

Yes, a dog is a lot of work. Yes, we are a busy family. Yes, they are expensive. Yes, it will be more responsibility for me. Yes, I now have to make sure Jim is cognitive and aware of something else during the day. Although we have had a few minor incidents, Jim has stepped up to the plate and I think this has been really good for him. It has been a rough holiday season and Duke is a very bright spot for us all.

The smiles, laughter, excitement, happiness and joy far outweigh any of the negatives that were thrown at me.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (10)

Christmas Cards in the Mail yet?

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Frances and Brad with Saint Nicholas at Endview Plantation. We took them for years. Dec. 2008.

Tis the season for cheer. And lots of friends gathering round. This is the time to sing songs you have been singing all of your life. Now is the occasion to send out cards to everyone you now know and everyone you once knew. Yep, it is time for the Christmas card drudgery.

Ever since I moved out into this great big world on my own, I have sent out cards every year in December. Except for last year. And the year before. And the two years before that. Each year I would promise myself I was going to find the time and the energy and the wherewithal to write the accompanying letter and get a nice family photo copied 100 times and we would sit down and make our cards. Yes, you read that right. Make our cards. I am NOT a crafty person. I have talents but crafts is not one of them. But, when the kids were little we started a family tradition of sitting down together and making our cards. In my mind, that was going to help us bond and we would create a magical card each year, topping the previous years’ masterpiece and eventually we would have a collection to put on display each year.

Well, about the time we really began settling into this tradition, Jim started having some symptoms that something was wrong. Which is a delicate way of stating that we were having trouble with our marriage and I wasn’t feeling jolly, delightful or ready to spread cheer to all of our friends on the mailing list.

Dec. 2009

Dec. 2009

So the first year we missed our cards, I told myself we would make New Year’s cards. We had the paper, the stickers, the markers, and the whole shebang of supplies. And then the second and third year, I fooled myself again into believing we could still do this. We didn’t. I didn’t. There was no way I could wrap my head around doing it. I briefly thought of doing the simple photo card and being done with it, but that would break our tradition, admitting I was a failure as a Mom and as a future Martha Stewart, and I am a little hard headed. So, no cards were done for 4 years.

Now it is that time again. I haven’t made a card, but my very artsy daughter, Frances, has. She has made 3 cards and is determined to make it to 10. I ordered the photos. We have 3 cards addressed, stamped and ready to be mailed. I might even use some of her supplies and make a few when I find a spare moment or two. The letter? Not going to happen. What would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s Disease and have no idea what our life will be like next year at this time. Merry Christmas.

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Dec 2010

I must remind myself many times a day of how we never know what life holds for us. I must remind myself how down I get each year now at this time and how each year we end up having a magical, memory making holiday.

This year, I am struggling, but I do feel stronger and better than I did last year. I fight off my negative thoughts and my bitterness and my anger each moment I am awake. Sometimes I do a great job and other times I should be fired.

I miss Jim so much during Christmas time. I miss our discussions of what to get the kids and our families. One year we hired a babysitter, took all the toy catalogs we had gotten in the mail and sat at a restaurant pouring through them together coming up with ideas. I miss sitting next to our lit tree after the kids are in bed, just looking at the lights and sharing quiet time together. I miss feeling excited, wondering what neat idea he had thought of for me under the tree. I miss his help decorating, doing the cards, singing songs, watching movies and so much more. He still watches the movies and he still throws out a hum (actually lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

We will carry on our traditions for as long as we can. We may start new ones. We may lose a few along the way. I am grateful we have each other. I love my family. I am so very, very grateful we are together as a family. I am grateful we have so much, when so many are in need. I am grateful it has been such a great year. I am grateful for all I have; yet I still feel so sad and so alone.

I miss Jim.

Saint Nicholas, Endview Plantation, Traditions, Alzheimer's Disease

Our final visit. Sad that this tradition has ended. Dec. 2011.

 

posted by Karen in Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)